roopa koshy mccall b.sc. psychology, women’s christian … · 2020-05-14 · understanding family...

UNDERSTANDING FAMILY CAREGIVING

FOR INDIVIDUALS WITH TRAUMATIC

BRAIN INJURY AFTER A ROAD TRAFFIC

CRASH IN OMAN

Roopa Koshy McCall

B.Sc. Psychology, Women’s Christian College, India

M.Sc. Human Resource Development Psychology,

University of Madras, India

Submitted in fulfilment of the requirements for the degree of

Master of Philosophy

School of Psychology and Counselling

Faculty of Health

Queensland University of Technology

2020

Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash

In Oman i

Keywords

Burden, Caregivers, Mixed Methods, Oman, Road Traffic Crash, Traumatic Brain

Injury

ii Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash

In Oman

Abstract

Globally, family caregivers play a tremendous role in the welfare of individuals with

Traumatic Brain Injury (TBI) after they have been in a Road Traffic Crash (RTC).

However, while significant caregiver research has been conducted among western

populations, there is a dearth of research in the Arab countries, and Oman is no

exception. This study aims to fill that gap in the literature by examining, evaluating

and understanding the lived experiences and burden of family caregivers in Oman,

who have been thrust into the responsibility of caring for an individual with TBI after

an RTC. While there has been a decline in the rate of RTCs in Oman, the long-term

pervasive effects of the injuries resulting from them have a profound impact on the

family and the community. This study has used mixed methods to understand the

experiences of caregivers within the cultural context. The findings of this study have

revealed that much like the other regions, caregivers in Oman experience burden and

adopt various coping methods to manage their stress. Various cultural elements

emerged from the data such as the gender roles in caring and the impact on marriage.

Owing to the limited availability of rehabilitative resources in Oman, and the

unavailability of support groups, families in Oman find themselves dependent on the

members within their community and family and their own personal religious faith

and beliefs to manage the strain of caregiving. The findings of this study can be

translated to other Arab regions and can be used to assist clinicians with providing a

family focused health care plan. The role of allied health services can assist in

providing a family focused medical care and allow for the discharge and transition

from hospital to the home as part of the rehabilitation continuum.


In Oman iii

Table of Contents

Keywords .................................................................................................................................. i

Abstract .................................................................................................................................... ii

Table of Contents .................................................................................................................... iii

List of Figures ...........................................................................................................................v

List of Tables .......................................................................................................................... vi

List of Abbreviations ............................................................................................................. vii

Statement of Original Authorship ......................................................................................... viii

Acknowledgements ................................................................................................................. ix

Chapter 1: Introduction ...................................................................................... 1

1.1 Background .....................................................................................................................1

1.2 Setting .............................................................................................................................8

1.3 Role Of Family During Chronic Illness In Oman .........................................................14

1.4 Significance Of The Study ............................................................................................16

1.5 Thesis Outline ...............................................................................................................16

Chapter 2: Literature Review ........................................................................... 19

2.1 Introduction ..................................................................................................................19

2.2 Definition Of Caregiver ................................................................................................19

2.3 Traumatic Brain Injury (TBI) .......................................................................................21

2.4 Impact Of Deficits From Post TBI On Family Caregivers ...........................................26

2.5 Challenges Of The Family Caregiver ...........................................................................34

2.6 Coping As A Caregiver Of An Individual With TBI After Road Traffic Crash ..........40

2.7 Theories Of Caregiver Burden ......................................................................................42

2.8 Gaps In The Literature ..................................................................................................47

2.9 Goal Of The Study ........................................................................................................48

2.10 Research Questions .......................................................................................................48

2.11 Justification Of Methodology .......................................................................................49

2.12 Outline Of Research Design .........................................................................................50

2.13 Hypotheses Of The Study .............................................................................................52

Chapter 3: Study 1- Examining The Burden Of Family Caregivers In Oman

Of Individuals With Brain Injury Post Road Traffic Crash ............................... 53

3.1 Introduction ..................................................................................................................53

3.2 Part 1: Quantitative Study .............................................................................................57

3.3 Part 2: Case Studies ......................................................................................................75

3.4 Discussion .....................................................................................................................90

iv Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash

In Oman

3.5 Implication ....................................................................................................................99

3.6 Limitations ..................................................................................................................100

3.7 Conclusion ..................................................................................................................100

Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study On The

Experiences Of Caregivers Of Individuals With TBI In Oman ........................ 103

4.1 Introduction ................................................................................................................103

4.2 Aim .............................................................................................................................106

4.3 Method ........................................................................................................................106

4.4 Findings ......................................................................................................................109

4.5 Discussion ...................................................................................................................124

4.6 Implication Of The Study ...........................................................................................129

4.7 Limitations And Future Direction ..............................................................................130

4.8 Conclusion ..................................................................................................................131

Chapter 5: General Discussion ....................................................................... 133

5.1 Introduction ................................................................................................................133

5.2 General Discussion .....................................................................................................133

5.3 Implications Of The Study ..........................................................................................138

5.4 Limitations ..................................................................................................................138

5.5 Future Directions ........................................................................................................139

5.6 Conclusion ..................................................................................................................140

Bibliography ........................................................................................................... 141

Appendices .............................................................................................................. 196

Appendix A Letter Granting Access To Archived Data .......................................................196

Appendix B Telephone Script…………………………………………………………….. 198

Appendix C Information Sheets for Participants (English)………………………………...200

Appendix D Information Sheets for Participants (Arabic Translation) ……………….......208

Appendix E Montreal Cognitive Assessment- Arabic……………………………………. 215

Appendix F Hospital Anxiety & Depression Scale- Arabic……………………………….216

Appendix G Functional Independence Measurement Scale……………………………… 218

Appendix H Zarit Burden Scale- Arabic…………………………………………………..219

Appendix I Screening & Demographic Forms for Interview……………………………...221

Appendix J Interview Schedule & Probes…………………………………………………222

Appendix K Narrative Qualitative Data (Examples)………………………………………225


In Oman v

List of Figures

Figure 2.1. Pearlin Stress Process Model .................................................................. 44

Figure 2.2. Yates Stress Model .................................................................................. 45

Figure 2.3. Study Design ........................................................................................... 51

Figure 3.1. Level of Burden Experienced by Family Caregivers .............................. 67

Figure 3.2. Characteristics in Omani Society that Impact Family Caregiver

Burden .......................................................................................................... 93

Figure 4.1. Themes of Family Caregiving in Oman ................................................ 111

vi Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash

In Oman

List of Tables

Table 3.1 Characteristics of Family Caregivers and Individuals with Traumatic

Brain Injury .................................................................................................. 58

Table 3.2 Score Values and Interpretation on Zarit Burden Scale (Original and

Revised) ........................................................................................................ 66

Table 3.3 Results of Participants in Group 1 and Group 2 on the Instruments ........ 67

Table 3.4 Correlation Matrix between Age of all Participants, Sequalae of TBI

and Caregiver Burden.................................................................................. 69

Table 3.5 Socio-Demographic Features of Caregivers and the Level of Burden ...... 71

Table 3.6 Socio-Demographic Features of individual with TBI and Burden of

Care.............................................................................................................. 73

Table 3.7 Socio-Demographic and Zarit Burden Scale Scores of Case Study

Participants .................................................................................................. 77


In Oman vii

List of Abbreviations

TBI Traumatic Brain Injury

RTC Road Traffic Crash

ICU Intensive Care Unit

OPD Outpatient Department

viii Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic

Crash In Oman

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet

requirements for an award at this or any other higher education institution. To the best

of my knowledge and belief, the thesis contains no material previously published or

written by another person except where due reference is made.

Signature: _________________________

Date: ___26-February-2020_______

QUT Verified Signature


In Oman ix

Acknowledgements

I would like to express my sincere gratitude to my incredible supervisory team.

To Associate Professor Nigar Khawaja, I am grateful for your insight, your

knowledge, your immense patience, for being readily available to speak with me and

always challenging me. To Dr. Brooke Andrew, thank you for all your support,

patience and your continuous belief in the work I was pursuing. Your feedback on

this study was invaluable. To Associate Professor Kerry Ann Armstrong, who is my

supervisor and my friend. Thank you for always reassuring and supporting me

through the entire process and through all the hurdles. To Professor Samir Hamed Al

Adawi: I have learnt so much from you. I will always hold you in the highest of

regard and respect. Thank you for supporting me as my external supervisor and all

your advice.

My parents, thank you for being so happy to look after Aurora when I needed

help. To Nathan, my husband, an immense amount of gratitude for captaining our

ship. Thank you for never allowing me to give up and being my best friend through

this entire experience. To Aurora, you give me so much joy and I am looking

forward to spending more time with both you and Dada.

Ms. Jokha Al Barashdi, Mr. Sachin Jose and Mrs. Marwa Al Hassani: through

our journey together we became friends and I am truly grateful for all your help with

translation, data collection and analysis. I would like to also extend my genuine

gratitude to the doctors, surgeons and the nursing staff in the Khoula Hospital Oman

for all their support. I am forever indebted to you.

To all the participants who took the time to be in this study, I am grateful for

your willingness and your patience. This could not have happened without you.

Thank you for trusting me and sharing your stories with me. I hope this work gives

you a voice.

Thank you

Roopa Koshy McCall

Chapter 1: Introduction

1


1.1 BACKGROUND

When an individual is diagnosed with a traumatic brain injury (TBI) as a

result of a road traffic crash (RTC), family members experience a whirlwind of

emotions and find that their lives change dramatically without warning or prior

preparation. The role as a “family caregiver” begins almost instantly and the

members of the family are expected to cope and adjust to the profound sense of loss

and shock.

1.2 TRAUMATIC BRAIN INJURY: DEFINITION AND TYPES

Delving into the nature of caregiving for an individual with TBI requires an

understanding of TBI and its epidemiology, consequences and its impact on society,

economy, medicine and family ties. Traumatic brain injury (TBI) has been defined as

“nondegenerative, noncongenital insult to the brain from an external mechanical force,

possibly leading to permanent or temporary impairment of cognitive, physical, and

psychosocial functions, with an associated diminished or altered state of

consciousness.”(Dawodu & Campagnolo, 2015). Brain injuries are of two major types:

Focal injuries, commonly seen among moderate to severe injuries, and diffuse brain

injuries, which is seen in mild TBI. Focal injuries are clearly apparent on

Computerized axial tomography (CT) scans or magnetic resonance imaging (MRI) and

are further localised to specific regions of the brain, i.e., internal brain injury, surface

injuries or in the cortical grey matter. Focal injuries are rarely identified in cases of

mild brain injury (Meaney, Morrison, & Dale Bass, 2014). Diffuse injuries are not

localized to one specific region of the brain but is a damage that is scattered throughout

2 Chapter 1: Introduction

the central nervous system and symptoms can appear over a period post the injury.

Diffuse Axonal Injury (DAI) is a common mild TBI that is extensively studied as the

damage is only apparent at a microscopial level on the brain, but is accompanied with

very visible physical, cognitive and emotional deficits (Gennarelli et al., 1982;

Karthikeyan, Purohit, & Sinha, 2017).

There are no support systems currently in place in Oman to prepare and aid the

family caregivers through the gruelling task of caring for a relative who has undergone

TBI, particularly as the health sector focuses more on physical rehabilitation rather

than cognitive or emotional rehabilitation. It has been suggested that the severity and

the number of post TBI symptoms affects the dependence and the subsequent burden

of the caregiver. Studies have shown that while caregivers often cope with physical

impairments as a result of TBI, the unpredictable nature of cognitive and behavioural

problems cause more strain on the quality of caring (Cavallo, M. M., & Kay, T. 2011).

It is unclear how TBI would affect the members of integrated families in societies such

as Oman, where not only is research in this field limited, but the experience of grief or

trauma is subsisted through cultural phenomenon such as Jinn, Hassad (jealousy), Ain

(evil eye), or Sihr (sorcery). Hence the experiences of the family members of an

individual with TBI in Oman must be examined and understood, in order to promote

the welfare of all the individuals that are afflicted, directly or indirectly, as a result of

TBI after an RTC.

1.2.1 Incidence of TBI from Road Traffic CrashStudies on injuries from Road

Traffic Crashes (RTC) have found that resultant injuries are ranked among the top

ten for ‘Global Disability-adjusted Life Years’ and is the leading contributor to a

high mortality rate among the younger population aged 15-30 years old,

predominantly in the lower and middle income countries (WHO, 2015a). In the high


3

income countries such as Saudi Arabia, Oman and the United Arab Emirates, the

highest number of causalities and injuries arise from RTC (Murray et al., 2015) and

intoxication while driving is the leading cause of TBI. But on the contrary in lower-

and middle-income countries, users of the motorways such as pedestrians, cyclists

and motorcyclists succumb to TBI rather than the drivers or passengers in motor

vehicles. The World Health Organization (WHO) has predicted that by 2030, RTCs

will be the leading contributor to high rate of fatality globally. Investigation into the

global impact of TBI is marginal and review of the literature from the west indicated

that the results from studies were divergent from one another or were not adequately

representative of the population. This might be a result of the variation in the

inclusion criteria of the studies and/or in the diversity of diagnosis and criteria for

admission in the medical system (Peeters et al., 2015). The prevalence of disability

as a result of TBI is only an estimate as there are no existing measures or systems

which closely monitors or follows the progression of the symptoms of individuals

living with TBI (Finkelstein, Corso, & Miller, 2006; Hale, Bohnert, Grekin, &

Sripada, 2019). Globally, all the estimates of prevalence and incidence are based on

hospital and medical records and do not necessarily consider individuals that are

receiving care outside of the formal medical system, such as complimentary services

or traditional healers (Dash & Chavali, 2018). It has thus been suggested that the

interpretation of the incidence of TBI should be done judicially and that a more

efficient system be employed to be able to adequately report the incidence of TBI

(Hale et al., 2019). While in the European countries, falls are quickly replacing

RTC’s as the main cause for TBI, the trend of RTC caused TBI continues in the Arab

countries, particularly younger male population (El-Menyar, Mekkodathil, Al-Thani,

Consunji, & Latifi, 2017). A compromise to the well-being of this particular


population poses as a social and economic crisis in these regions as these are the

younger employable and often, sole providers for the families. However no

prevalence studies are done in these regions to capture the extent of this damage.

According to the World Health Organization, 1.35 million people are fatally

injured each year as a result of RTCs and for some, their quality of life is

catastrophically impacted by the emotional, physical and cognitive consequences of

their injuries, both for themselves as well as their families (WHO, 2018b). While

countries like France have been successful in reducing the number of RTCs as a

result of the enforcement of stricter traffic laws (Lieutaud, Gadegbeku, Ndiaye,

Chiron, & Viallon, 2016), globally the rate of RTC has remained largely constant

(WHO, 2018b). The impacts of injuries from an RTC, particularly TBI, are usually

long-term consequences, marked by cognitive decline, functional impairment,

increased psychological and behavioral disturbances and an overall change in

personality (Senathi-Raja, Ponsford, & Schönberger, 2010; Stocchetti & Zanier,

2016). Regardless of the severity of the TBI, individuals are often subject to

psychiatric or neurocognitive deficits such as cognitive dysfunction, amnesia or

dementia, personality changes and mood disorders throughout the first year post

injury, or even longer (Fann et al., 2004; Lauterbach, Notarangelo, Nichols, Lane, &

Koliatsos, 2015; J. Ponsford & SchÖNberger, 2010).

1.2.2 Consequences of TBI on the Family Caregivers

Across the world, medical systems depend on family caregivers to conduct

long-term care that accompanies the diagnosis of TBI. Family caregivers are

considered allies in the medical care system, as they are depended on to continue the

provision of services after the discharge of the individual from hospital (Schulz,

Eden, National Academies of Sciences, & Medicine, 2016a). Clinicians depend on


5

them to aid in providing medical history, accompany the individual with the

impairment on hospital visits, provide medication and treatment in the home, and

create a suitable environment for the welfare of the individual with TBI (Schulz et

al., 2016a; Schulz, Eden, National Academies of Sciences, & Medicine, 2016b).

Unfortunately, family members, who are often unprepared for the extent of the

changes and the intensity with which they appear in their individual with TBI, find

themselves in grief and shock over the loss of a family member they knew prior to

the injury. They are forced to adjust to what in some cases can essentially be a

‘stranger’ among them (Bodley-Scott & Riley, 2015; Norup & Mortensen, 2015;

Toglia & Golisz, 2017; Wongvatunyu & Porter, 2008). Subsequently, the pressures

associated with having the responsibility of caregiving for a family member with TBI

can impact the quality of life for the caregiver (Chang, Chiou, & Chen, 2010; Schulz

& Sherwood, 2008). The inability to have active or productive social lives, social

withdrawal and isolation, negative thoughts and anxiety for the future, financial

strain and guilt are all potential consequences of undertaking the role of a family

caregiver (Braine, 2011; Chang, Chiou, & Chen, 2010; Dahm & Ponsford, 2015;

Jumisko, Lexell, & Söderberg, 2007; J. L. Ponsford & Spitz, 2015; Schulz &

Sherwood, 2008). Marriage, as a result of the time allocated to caregiving, is known

to be severely impacted (Knox, Douglas, & Bigby, 2015; Jeffrey S Kreutzer, Mills,

& Marwitz, 2016; Tam, McKay, Sloan, & Ponsford, 2015). The breakdown of the

marriage is a frequent occurrence as result of the inability to spend quality or

intimate time with the partner (Carlozzi et al., 2015; J. Ponsford, Olver, Ponsford, &

Nelms, 2003; Wedcliffe & Ross, 2001).

Thus, caregiving has been identified as a source of stress and affects

vulnerable members of the population, such as elderly parents who must care for


their adult children after a TBI or even young adults in their prime who are

responsible for the welfare of their siblings, parents or spouses with a TBI.

Furthermore, research has indicated that family caregivers of individuals with TBI

tended to associate the strain that they experienced predominantly with the cognitive

and physical demands of the individual living with TBI (Harding et al., 2015). They

find that coping with the cognitive, emotional and behavioural changes post TBI

rated as more strenuous than the physical disabilities (Tam et al., 2015). Caregivers

rarely seek help or medical assistance for their own struggles and as a result, research

has referred to the family caregivers as the “Hidden Patients” in healthcare (Hoerger

& Cullen, 2017; Hudson et al., 2012; Kristjanson & Aoun, 2004). But their welfare

impacts not just their own selves, but also the quality of care provided to the

individual with TBI and the overall recuperation of the individual back into society

(Colantonio et al., 2016; Durber et al., 2017; Gagnon, Lin, & Stergiou-Kita, 2016;

Rasmussen, Andelic, Nordenmark, Arango-Lasprilla, & Soberg, 2019; Schulz et al.,

2016b). The availability of social support systems in their community has been

known to be successful in aiding family caregivers with their burden (Gan, Gargaro,

Brandys, Gerber, & Boschen, 2010; Jumisko et al., 2007; Phelan et al., 2011; Schutz,

Coats, Engelberg, Curtis, & Creutzfeldt, 2017). However, the availability of these

facilities can be limited (Claire Jourdan et al., 2013).

It is important to note that most of these findings have originated from studies

from Euro-American populations, and it is only recently that the role of culture and

ethnicity on the experience of caregiving has been discussed. The perception and

experience of caregiving is impacted by contextual features in the environment of the

caregiver, such as their ethnicity, gender, culture, belief systems and social

expectations (Knight et al., 2002; Knight & Sayegh, 2010). Studies from various


7

ethnic groups have identified differences in the way caregiving is experienced and

perceived by family caregivers (Knight & Sayegh, 2010; Lai, 2010; Perrin et al.,

2013; Pharr, Dodge Francis, Terry, & Clark, 2014). The role of religion,

collectivism, familial piety or obligation and gender create significant variation in

how caregiving is extended and understood among different populations (Corallo et

al., 2019; Friedemann & Buckwalter, 2014; Lai, 2010; Lee & Tang, 2015; Pan,

Jones, & Winslow, 2017; Pharr et al., 2014; Revenson et al., 2016). Yet there is a

dearth in caregiver literature arising from the Arab countries.

The Sultanate of Oman is one such Arab Islamic country and it possesses a

rich heritage and culture. Over the last decade, all sectors of the country have

focused attention on achieving better road safety behaviors and reducing the rate of

road crash fatalities by 25% by 2020 (WHO, 2018a). Research on sequelae arising

from TBI and other injuries post RTC from this country have been extensive.

However, there are no studies to date exploring the family caregiver experience after

a sudden event like an RTC which causes TBI in a family member. Thus, this study

explores and examines the experiences of the family caregivers of individuals who

suffered TBI after being in an RTC in the Sultanate of Oman.


1.3 SETTING

1.3.1 The Sultanate of Oman

The Sultanate of Oman is an Arab country situated in the southern tip of the

Arabian Peninsula, flanked by the Arabian Sea along the eastern shore, with the

United Arab Emirates in the North, Saudi Arabia on the West and Yemen in the

South. Oman is the second largest country in the Gulf Countries Corporation (GCC)

and has large oil reserves (5.5 billion barrels) that are

exported to Asia and China. Arabic is the common

dialect, although Farsi and Swahili are also

commonly spoken languages. His Majesty (HM), the

Sultan Qaboos Bin Said, is the 14th Sultan and has

descended from the long ruling dynasty of the Al-

Busaidy family, that have stayed in power since

1754. The reign of HM Sultan Qaboos has been

titled “The Great Renaissance” as under his leadership, Oman opened its doors to

modernisation, foreign trade and investment with overall a higher quality of life. The

United Nations Development Program has declared Oman as a country that has

experienced significant improvement through urbanisation (United Nations

Development Programme, 2011) and the country is ranked at 70th for regional peace

without violence and militarisation (Global Peace Index, 2017). According to the

World Bank’s classification, Oman is a high income country (WHO, 2015b). It is

largely an Abadi Islamic state, with minority groups of Shia and Sunni Muslims.

Religious beliefs and culture are very closely entwined, and the collectivistic society

harbours and nurtures strong family bonds. The population, as of 2019, was

estimated to be 5 million, with a yearly growth rate of 3.56% (Worldometers, 2019).

The Omani population is dispersed across the country and for many seeking


9

healthcare in the main cities, this can be a challenge owing to the complex terrain.

Indeed, integrated community health services are not yet fully available in many

locations in Oman (Hodges, 2015).

1.3.2 Prevalence of Road Traffic Crash Fatalities in Oman

The World Health Organisation (WHO) has predicted that by 2030, RTCs

will be the leading contributor to fatality globally, and this will further increase the

substantial risk already prevalent in Oman (WHO, 2018b). Oman witnesses an

average of 798 fatalities every month owing to RTCs alone (Asim et al., 2014). A

previous study in Oman showed that 34% of injuries and 16% of deaths every year

are a consequence of RTC (M. M. Islam & Al Hadhrami, 2012), and 52% of RTC

related injuries include head, face and neck injuries (Chitme et al., 2017). The steady

and high rate of urbanisation, an increase in population, construction of new roads

and highways, mobile phone usage and an increase in the rate of vehicle ownership

contribute to the prevalence of RTC in Oman (Al-Aamri, Padmadas, Zhang, & Al-

Maniri, 2017; Al-Reesi et al., 2013). Approximately 3.3 million Omani riyals (11.3

million AUD or 8.5 million USD) are spent each year in Oman solely for individuals

to receive acute in-patient care after being rendered with a TBI following a RTC.

Data shows that RTCs and subsequent brain injury occur more prominently among

the most economically and physically productive group in society, namely those

below 45 years of age (Al-Naamani & Al-Adawi, 2007). Dangerous driving patterns,

such as speeding, unsafe tailgating, mobile phone usage and driver inattention

(Bates, Davey, Watson, King, & Armstrong, 2014) are seen in both the male and

female drivers in the country (Al-Adawi & Burke, 2001). However RTC fatalities are

most common among males aged 24 to 29 years (Al-Naamani & Al-Adawi, 2007).


Recently, with a vision to curb the rate of RTCs in Oman, the government has

enforced disciplinary measures, such as fines and imprisonment for violation and

disregard of traffic rules. However, it has been suggested that any governmental

measure to curb the rate at which RTC occurs in Oman will be met with challenges.

The laws have to be consistently updated, changed or altered with the fast-paced

nature of changes in Omani society, and as a result of this, enforcement of these rules

may be perceived as ‘lenient’ (Al-Aamri et al., 2017).

1.3.3 Medical and Emergency Services in Oman

Since the 1970s the healthcare system in Oman has witnessed considerable

development and this has led to a marked reduction in the infant and maternal

mortality rate in the country (Al-Lawati, Mabry, & Mohammed, 2008). Health care

services are provided in a tiered manner at the national, regional and local levels (i.e.,

primary health care is available in the communities and villages, while secondary

care hospitals are in the larger townships and the referral and tertiary hospitals are in

the capital city of Muscat). Healthcare in the government sector is free to all

nationals who reside in Oman and medical insurance is provided by employers for

healthcare services in private sector as well. However, advanced and effective trauma

and emergency services are still uneven, and this poses a challenge to the country,

where the largest number of in-patient demands are for injuries caused by falls,

RTCs and other external forces (Ministry of Health, 2016). In addition, referral and

tertiary hospitals are clustered in the northern regions of the country and this poses as

an inconvenience to families and patients who seek specialised medical care from

the southern or other interior regions and have to travel long distances to access

treatment (Mehmood et al., 2017). The impact of this limitation on the experiences

of the family caregivers and how they cope in Oman, is yet to be clearly understood.


11

There are two main neurological centres in Oman, located in Muscat and

Nizwa, which are well equipped with surgeons, intensivists and an Intensive Care

Unit (ICU). The Nizwa Hospital, located in the Al-Dakalyia region of Oman, is

equipped for the treatment of around 300,000 patients per year, with a modern 8-bed

ICU. However, due to the lack of neurosurgical facilities in the hospital, patients are

transferred to the Khoula Hospital, Ministry of Health, the National Trauma Centre

located in the capital city of Muscat. Khoula hospital is endowed with a highly

equipped ICU, and specialised anaesthetists, neurosurgeons, nurses, physiotherapists,

psychologists, social workers and occupational therapists. In addition to this, in 2017

the hospital opened a new facility with specialised outpatient clinics (neurosurgery,

plastic surgery, hand surgery, general surgery and foot & diabetic foot) and a

department of physiotherapy and rehabilitation. Chronic patients remain in the care

of the in-patient facilities for an average of 10 days and after discharge, families are

expected to continue the process of caregiving for the individual. To date there are no

studies evaluating the experiences of family caregivers of individuals with TBI who

are accessing medical facilities and services in Oman.

1.3.4 Rehabilitation Facilities in Oman

The National Institutes of Health has described that rehabilitation of an individual

who has incurred TBI should include cognitive and behavioural assessment and

intervention (Bayley et al., 2014; Khan, Amatya, & Hoffman, 2012). But many

rehabilitative facilities in Oman equate physical well-being with a general sense of

betterment post injury and focus on physiotherapy or occupational therapy in order to

accelerate the process of physical health, while paying little attention to the

cognitive, emotional or behavioural deficits often present post TBI (Al-Kashmiri, Al-

Shaqsi, Al-Kharusi, & Al-Tamimi, 2015). If treatment is required for cognitive and


emotional disorders, patients from all over the region are referred to the government

hospital, Sultan Qaboos University Hospital, in the capital city of Muscat. However,

owing to the stigma and cultural constraints attached to the expression of post-

concussion syndrome and other neurocognitive deficits in the country (Al-Adawi et

al., 2002; Al Alawi, Al Sinawi, Al Maqbali, & Al Hatmi, 2016), only a few attend or

follow up with the clinic. Therefore, families often resort to travelling outside the

country to acquire post TBI rehabilitation or resort to complementary and alternative

sources of treatment (Al-adawi, 2017; Samir Al-Adawi, Zakiya Al-Busaidi, Sara Al-

Adawi, & David T Burke, 2012b; Al-Hashar & Al-Zakwani, 2018). Studies on the

experiences of these family caregivers of individuals with TBI would allow for

greater insight as to the rate of improvement or decline of the individual with TBI,

and provide a further insight into the medical, economic, and psychological needs of

their families.

1.3.5 Socio-cultural Factors in Oman

The population of Oman comprises numerous tribes, each with a common

ancestry, and they live cohesively with members of other tribes. Essentially, the

typical Omani family is an extended family, with three or four generations living

together in an inter-dependent patriarchal household, that has an average of seven or

eight children. Polygamy, though on the decline, is practised based on the tenants of

Islam, and with the rapid uprising of modernisation, female employment, and

education, the smaller sized nuclear family has emerged. The teachings in Shariah

Law and from Islamic scholars contribute to the way behaviours and responsibilities

are conducted within the family, as well as in the economy and politics of the Arab

regions (Al-Barwani & Albeely, 2007). These teachings offer clarity on the social

roles individuals within an interdependent group are expected to play (Almutairi &


13

McCarthy, 2012). While the laws are consistent with Islam, they do not directly

reflect the Holy Quran; being based on the teachings of the scholars, these teachings

can vary from one region to another (J. Ryan, Al Sheedi, White, & Watkins, 2015).

Much like in many other collectivistic cultures, care for dependents, such as the

unwell, aging or minors is considered one’s duty, and this is further substantiated by

the teachings in the Holy Quran and the teachings of the Prophet Mohammed. This

‘duty’ is deemed to be the shared responsibility among the various members of the

immediate and extended family. In the Islamic society of Oman, belief systems and

religious teachings are often sourced, in order to understand and rationalise any given

crisis and to cope with the undesirable experiences such as grief, shock and death

(Samir Al-Adawi, Zakiya Al-Busaidi, Sara Al-Adawi, & David T. Burke, 2012a; Al-

Adawi et al., 2012b). Understanding of physical and mental health in Oman is

influenced strongly by the socio-cultural factors and belief systems prevalent in the

region (Al-adawi, 2017; Al-Adawi et al., 2002; Al-Alawi, Al-Sinawi, Al-Adawi,

Jeyaseelan, & Murthi, 2017; Al-Barwani & Albeely, 2007; Al-Sinawi & Al-Adawi,

2006).

Abnormal behaviour is often described as any behaviour that goes against the

social norm (Sue, Sue, Sue, & Sue, 2015). Behaviours that do not interfere with the

well-being of others within the society are preferred and considered desirable in

these regions. As such, it is possible that the presentation of certain psychological

impairments is often overlooked by the family as they can be misinterpreted within

the norms of the culture in the country. Unobtrusive and less aggressive behaviours

are encouraged and are not a source of concern for families. More commonly,

psychiatric distress in Oman is somatised rather than vocalised, as it is possible that

voicing discontent may not be considered appropriate (Al-adawi, 2017; Hodges,


2015). There exists a tendency to attribute the presentation of symptoms of TBI

through religious beliefs in the supernatural or culturally sanctioned spirits rather

than a contribution of physiological factors (Mbakile-Mahlanza, Manderson, &

Ponsford, 2017). These include the belief in supernatural powers (Jinn),

contemptuous envy (Hassad), the evil eye (Ain) and sorcery (Sihr) (Al-Adawi et al.,

2012a; Al-Adawi et al., 2012b; Al Riyami, Al Adawi, Al Kharusi, Morsi, & Jaju,

2009). It has been suggested that this be regarded an ‘idiom of distress’ and likely to

be a consequence of the lack of facilities currently available in the region catering to

the needs of these families (Al-Adawi et al., 2012a; Al-Adawi et al., 2012b). But

these beliefs in the supernatural are impacted by the rural-urban divide (Al-Alawi et

al., 2017) and are challenged by the rise in education amongst youth (Musharrafi, Al-

Ruzaiqi, & Al-Adawi, 2017) and having family members with mental illness (Al-

Alawi et al., 2017). Thus, an awareness of the cultural implications in the expression

of distress is crucial in understanding the way behaviours of people living with

physical or psychological impairment is interpreted in the Sultanate of Oman.

Moreover, these factors possibly closely influence the way caregiving is provided

and sought after in Oman.

1.4 ROLE OF FAMILY DURING CHRONIC ILLNESS IN OMAN

The institution of family is significant in a collectivistic society such as

Oman. All the members of the extended and immediate family have a say in the

welfare of the individuals within the family unit. Similar to the Hispanic community

in the west and many collectivistic regions of the East, Omani culture endorses care

for the young, elderly or an ailing family member as one’s ‘duty’ (Doyle et al., 2013;

Nonterah et al., 2013; Sung et al., 2013). This responsibility tends to extend as social

duties to members of both the nuclear family (parents, spouses, siblings and


15

children), as well as the extended family comprising aunts, uncles, cousins, nieces

and nephews. With the decline of the average time a patient receives in-patient care

within hospital settings (Al-Kashmiri et al., 2015), the responsibility of care for the

unwell individual falls almost entirely on their family members. Families in Oman

value their significance in being involved in the treatment plan of their ailing family

member and an illness is regarded as a crisis not just for the individual, but for his or

her family and community at large (Al-Saadoon & Al-Adawi, 2019; Al‐Bahri, Al‐

Moundhri, Al‐Mandhari, & Al‐Azri, 2018; A. A. Al Balushi, 2019; Bian, 2015).

In Oman, professional health care providers depend on family caregiving as

the family members can drive an individual’s recovery and rehabilitation into society

through goal setting. Further, patients often prefer family care and opinions over

professional health care, owing to the amount of trust that one places in family

members (Al-Mandhari, Al-Adawi, Al-Zakwani, Al-Shafaee, & Eloul, 2009). The

Omani community practices the traditional collectivistic ideology of the ‘self’, and

the family takes the prime responsibility of caring for an individual who is sick or

afflicted, and the idea of a sick member of society being responsible for their own

self is incomprehensible (Al-Mandhari et al., 2009; Al-Saadoon & Al-Adawi, 2019).

In this region, while families prefer to care for the individual who is unwell, medical

professionals are considered as ‘all-knowing’ or ‘wise’ or ‘Hakim’(Chamsi-Pasha &

Albar, 2016), and families prefer to have a paternalistic interaction with clinicians

(Norrish, 2015). In addition to this, males take a more proactive role in medical

decision making in the formal healthcare system, while women are primarily

responsible for the care provided in the home (A. A. Al Balushi, 2019). Although

this trend has changed significantly, and women in Oman today hold esteemed

positions within the country, their responsibilities in their homes towards their


dependents extend despite their employment or social status (Goveas, 2011).

Therefore, while modernisation has impacted the social structure from large joint

families to nuclear lifestyles, interdependence on family members and community

continues to be encouraged, and even expected. The impact of these features on the

family caregivers of individuals with TBI are not yet clearly understood. Clarity in

this domain might assist clinicians in providing holistic and family focused care.

1.5 SIGNIFICANCE OF THE STUDY

This study aims to shed light on the lived experiences of the family caregivers

of individuals with RTC-related TBI in Oman. It is the first of its kind in this country,

aiming to establish a platform for further research and contribute to the potential

development of support groups and counselling facilities for families. It is

anticipated that the results of this study can be applied to other Middle Eastern

regions with similar cultural and historical backgrounds and can be a point of

reference to enhance family-focused medical care in the region as a whole.

1.6 THESIS OUTLINE

The first chapter of this thesis has introduced the important social and cultural

context of the research and described the need for family caregiver studies within the

Sultanate of Oman. Chapter 2 presents a review of existing literature on the

experiences of caregivers of individuals with TBI from the Euro-American

perspective as well as other ethnic entities. It identifies a gap in the literature and

concludes with a brief overview of the methodological approach used in this

research. Chapter 3 provides the details about the first study which utilised a mixed

methodology, Part 1: quantitative study and Part 2: case study. It presents the

methodology, results and a brief discussion of the first study that was conducted in

the Khoula Hospital, Muscat from January 2019 to May 2019. Chapter 4 presents the


17

introduction, methodology, findings and discussion of the second study, which was a

larger qualitative study on the family caregivers in Muscat. Chapter 5 presents the

discussion, based on the findings and the current literature with theoretical

framework, an overall discussion and conclusion for the thesis. It also canvasses the

limitations of the study as well as the implications of the study findings.

Chapter 2: Literature Review

19


2.1 INTRODUCTION

The task of caring for a relative who has suffered a TBI can be a challenging

ordeal, particularly if the injury occurred without any warning, such as in the event

of an RTC. Family caregivers have been referred to in the past as “hidden patients”,

with minimal research attempting to understand their experiences, particularly in the

Arab countries. Chapter 1 introduced important social and cultural contexts in the

Sultanate of Oman and highlighted how little is known about the impact of TBI on

caregiving members of integrated Arab families. Hence, the experiences of the

family members of an individual with TBI in Oman must be examined and

understood, in order to promote the welfare of all the individuals that are afflicted,

directly or indirectly, as a result of TBI after an RTC. This chapter presents

definitions of caregiving and a review of the literature with a focus on the cultural

implications of the challenges and experiences of this phenomenon. Finally, the aims

and hypotheses of the present study are specified.

2.2 DEFINITION OF CAREGIVER

The term ‘caregiver’ is a broad category describing any individual or a group

of individuals who provide physical or mental assistance for an ailing member of

society (Talley, Chwalisz, & Buckwalter, 2011). ‘Formal caregivers’ or professional

caregivers are paid care providers such as nurses, doctors, psychologists, social

workers, home aides and so on. On the other hand, a ‘family caregiver’ or an

‘informal caregiver’ refers to a person or a group of persons who tend to the needs

20 Chapter 2: Literature Review

of relatives or family members who may be frail, elderly or experiencing a

mental or physical disability (Australian Institute of Health & Welfare, 2004;

Talley et al., 2011). This involves unpaid emotional, financial, nursing or

domestic care to another individual on a regular or daily basis (Elmore, 2014;

Horowitz, 1984; S. H. Zarit & Talley, 2012). Depending on the needs of the

care recipient, the responsibilities can be aiding with activities of daily living

such as eating, bathing or movement (Barrio, Hernandez, & Gaona, 2016)

and/ or instrumental activities of daily living, like maintaining financial

responsibilities, seeking and holding employment or preparation of meals for

the family (Brault, 2012). The requirements and expectations to fulfil these

responsibilities leave family caregivers at risk of emotional or physical

turmoil. Thus, more research has emerged recently examining and exploring

the caregiver experience or caregiver burden.

The term “caregiver burden” has been criticised for its ambiguity

(Awad & Voruganti, 2008; Bastawrous, 2013). According to George and

Gwyther (1986) and Awad and Vorungati (2008), the term “caregiver

burden” in this context entails the emotional, physical, social and financial

challenges experienced by a family member who is caring for an individual

with a disability and is marked with psychological distress (Awad &

Voruganti, 2008; George & Gwyther, 1986). The burden experienced is

categorised into objective burden and subjective burden. “Objective burden”

is experienced by the family caregiver as a result of the physical care that is

provided to an individual whose health has been compromised, while

“subjective burden” is experienced as a result of the objective care that is


21

provided (Montgomery, Gonyea, & Hooyman, 1985; Montgomery, Stull, &

Borgatta, 1985). The term “Caregiver experiences” in this study is utilised in

order to understand the circumstances and the context in Oman, such as the role of

the clinicians, culture, family and social support and its impact on the process of

caregiving (Hunt, 2003). “Family caregivers” in this study refers to family members

who offer informal care to an individual within their family unit diagnosed with TBI

after an RTC.

2.3 TRAUMATIC BRAIN INJURY

The experiences of family caregivers of individuals with TBI cannot be

completely comprehended without an understanding of the nature of TBI. The

survival rate following TBI has improved owing to the implementation of better

trauma services; however, long term disabilities as a result of TBI have a far reaching

impact (Scholten, 2016). Chapter 1 outlined the scope of the problem of RTC-

related TBI in Oman, and to extend on this, the following section will highlight the

impact of this on society, on health and on the family caregivers.

2.3.1 The Impact of TBI on Society: Socioeconomic and Healthcare

Implications

The social and economic price of TBI has been very high on the individuals

with the injury, their families and society. As of 2010, Europe spent over USD 50

billion in medical costs for TBI (Gustavsson et al., 2011) and in the USA,

approximately USD 85 billion in 2017 (Finkelstein et al., 2006). The average lifetime

cost per person in the USA is about USD 396,000 (Faul, Wald, Rutland-Brown,

Sullivent, & Sattin, 2007). However, these numbers may not necessarily indicate


costs for individuals with mild TBI, whose symptoms are not transparent and

are often misdiagnosed (Maas et al., 2017). The Brain Injury Outcomes New

Zealand in the Community (BIONIC) study (Feigin et al., 2013) identified

that costs for the lifetime care for mild TBI is comparatively less than that

spent for moderate to severe TBI (Te Ao, 2014). While this may seemingly

appear optimistic, mild TBI is diagnosed nearly 3 times more than moderate

to severe TBI (Te Ao, 2014). The BIONIC study has found that globally the

costs for TBI would range between USD 362 billion to USD 445 billion

annually (Te Ao, 2014).

The treatment and management of TBI usually mandates the care of

specialised and multidisciplinary emergency services, including consultation

with physicians, admission into ICU or the hospital and/or rehabilitation

services. Guidelines are in place to provide optimal and evidence based care,

which have improved the quality of treatment provided to individuals with

TBI (English et al., 2013) . It has been found that when medical care for

individuals with TBI is provided in specialised hospital settings, this plays a

significant role on the functional outcome and is also economical (Harrison

et al., 2013; Patel et al., 2005; Tepas III, Pracht, Orban, & Flint, 2013).

However, high quality medical care is not always available, and the system

and quality of medical practice varies between countries, between hospitals

and between each patient (Maas et al., 2017).

More commonly after discharge from the ICU, hospitals are largely

dependent on family members owing to the lack of staff to attend to each


23

patient, and rehabilitation services are often deficient (Maas et al., 2017). In fact,

large numbers of patients have reported not having received any rehabilitation after

the injury (Chesnut et al., 2012). Therefore, while high quality care is usually

provided while the individual with TBI is in ICU, post-ICU care does not maintain

such high standards, and this ultimately impacts the rate and quality of long-term

consequences of the injury (Maas et al., 2017). In fact, clinical management of TBI is

largely dependent on surgical, pharmacological intervention and physiotherapy and

none of these methods has proven to be efficient. This is owing to poor evidence of

improvement, transfer of patient to surgical facilities, experience of the surgeon; and

the implementation of these practices varies across locations (Maas et al., 2017).

Further, the beneficial effects of surgical intervention vary from patient to patient and

are largely debated. What families view as a suitable outcome of treatment differs

significantly from a medical viewpoint.

Apart being able to preserve life and some neurological functioning (Seelig et

al., 1981), surgeries can also have undesirable results such as severe cognitive

sequalae and/or persistent vegetative state (Li et al., 2012; Nijboer, van der Naalt, &

ten Duis, 2010). Further complexity is added by the lack of rehabilitation facilities

for survivors of TBI, with rehabilitation of individuals largely based on the severity

and care of the injury, functioning of the individual prior to the injury, educational

status and social functioning. Rehabilitation varies based on the level of the injury

and primarily focuses on restitution (reinforcing previously learnt behaviour),

compensation (management of daily living with impairment, physical therapy) and

re-adaptation to one’s environment (psychosocial adjustment) (Maas et al., 2017). It

has been strongly recommended that rehabilitation encompasses the physical,


behavioural, cognitive, emotional, familial and environmental factors of an

individual with TBI. However, while theoretically such is the argument, most

rehabilitation facilities globally continue to focus only on physical therapy.

2.3.2 The Impact of Surviving a TBI

The consequences of surviving a TBI are difficult to predict and vary

with each experience and level of injury. However, a recognisable pattern of

surviving a TBI involves four phases, the first being the coma or loss of

consciousness, followed by behavioural or cognitive dysfunction, which is

then met in the 6th to 12th month post injury with a rapid recovery which then

stagnates over a period of time. After this period, the final phase of TBI is the

presence of permanent cognitive sequelae or sometimes, a full recovery (J.

Ponsford, Sloan, & Snow, 2012). As well as resulting in ‘focal’ deficits

attributed to the injuries of specific sensory and motor pathways, brain injury

is often associated with pervasive disturbances in behavioural, emotional, and

cognitive functioning (Shah, Carayannopoulos, Burke, & Al-Adawi, 2007).

Among the many neuropsychological complaints that are prevalent after TBI,

depression and anxiety are the most common symptoms (Singh, Mason,

Lecky, & Dawson, 2018).

The emergence of depression is compounded by physical pain, sense

of loss, demoralisation and discouragement, and individuals that are at high

risk of developing mood or anxiety disorder post injury usually have a family

history of mental health crisis or premorbid dysfunctions and a decline in

psychosocial activities after the injury (Gould, Ponsford, Johnston, &


25

Schönberger, 2011). While psychosis is comparatively lower among the TBI

survivors, the injury itself increases the risk of psychotic illness, and often is

manifested as delusions (Arciniegas, Harris, & Brousseau, 2003; Vaishnavi, Rao, &

Fann, 2009). Personality changes are generally observed in individuals with TBI,

marked with lability, disinhibition, poor impulse control, apathy and paranoia and

more often than not, these symptoms are impervious to alteration or

pharmacotherapy (Al-Adawi et al., 2016; Norup & Mortensen, 2015).

Neurological diseases can also develop later in life as a consequence of TBI.

Researchers found that after the age of 55, 44% individuals with TBI were at risk of

developing Parkinson’s disease or dementia (Fleminger, 2003; Gardner et al., 2015;

Wilson et al., 2017)). Further, 2% to 16.7% individuals with mild to severe TBI

experience post traumatic epilepsy (Christensen, 2012); studies have found that TBI

doubles the possibility of stroke, and subsequent mortality (Liao et al., 2014).

Individuals post TBI have been found to have poorer social integration skills than

their healthy counterparts, and experience difficulty understanding or recognising

emotions and thus are unable to provide skilled responses in social circumstances

(May et al., 2017).

Regardless of the severity of the TBI, individuals are subject to psychiatric or

neurocognitive deficits throughout the first year, or even longer, post injury (Fann et

al., 2004). One study indicated that 15 years into the injury, more than half of the

individuals diagnosed with TBI reported cognitive dysfunction, amnesia or

dementia, personality changes and mood disorders (Lauterbach et al., 2015). The

renowned PariS-TBI study presented the consequences of TBI on the individual and


their caregivers in a large cohort of individuals with TBI over the age of 15.

The study aimed to highlight the social, personal and cognitive consequences

of the injury on the individual with TBI as well as the impact of caregiving

for them on their family members. In its findings, individuals with TBI

suffered from cognitive and somatic deficits long term, with very minor

improvements in their motor functioning (Jourdan et al., 2016; Ruet, Bayen,

Jourdan, Diehl, & Azouvi, 2018). These long term consequences of TBI

produced high caregiver burden, and also established the use of more coping

techniques (Caplan, Bogner, Brenner, Arciniegas, et al., 2016). Clearly, RTC

related injuries, particularly TBI, transcends time, resulting in numerous

demands from families of the survivors. It is therefore of utmost importance

to understand the experiences of family caregivers in Oman, who are caring

for individuals with TBI within the specific sociocultural context.

2.4 IMPACT OF DEFICITS FROM POST TRAUMATIC BRAIN INJURY

ON FAMILY CAREGIVERS

The family is the basic social institution comprising relationships

through consanguinity or affinity between individuals that determine social

behaviour within a community (Steinmetz & Sussman, 2013). However,

family equilibrium can be interrupted with unforeseen events that disrupt the

well-being of any one of the members within that family unit, such as a road

crash, resulting in brain injury (J. Ponsford & SchÖNberger, 2010). A review

of the literature indicates the toll incurred due to the type and extent of injury.

Moreover, the symptoms not only affect the individual diagnosed with TBI,

but also affect the family of the individual in question (Allen, Linn, Gutierrez,


27

& Willer, 1994; Evans, 2012; Jeffrey S. Kreutzer, Marwitz, Sima, & Godwin, 2015;

N. V. Marsh, D. A. Kersel, J. A. Havill, & J. W. Sleigh, 2002; J. Ponsford &

SchÖNberger, 2010; Silver, 2011; Zgaljardic et al., 2015).

The impact of TBI affects the family system in three stages (Cavallo & Kay,

2005). The first stage is in the hospital, which is referred to as the “Acute Phase”

where the family focuses on the stabilisation of the individual with TBI and is

completely at the disposal of the needs of the individual. The second stage is the

“Rehabilitation Phase” during which the caregiver role is adopted, and the family

members focus on the recovery of the individual. This stage is usually marked with

the transition from the hospital to the home. The last stage is “Reintegration”, where

the family members try to regain again re-establish their role in the family and

society. This might be through returning to employment or continuing to carry out

functions within the family. The effort a family makes to restore its stability can be

stressful and burdensome. Post TBI, family dynamics are altered in order to suit the

needs of essentially a ‘stranger’, and the role of ‘caregiver’ is taken up very often

without preparation (Al-Naamani & Al-Adawi, 2007). Commonly, the behavioural

changes and cognitive deficits post TBI are unexpected by the family members who

were initially relieved at the prospect of bringing their individual with TBI home

(Benjamin Turner et al., 2007; Ben Turner et al., 2010). Families find themselves

unprepared for the extent of changes they experience. With post TBI behavioural

changes, families often find themselves having to grieve over the ‘demise’ of a

family member they knew prior to the RTC, and trying to forge new relationships

with a different and very often, difficult personality (Degeneffe, 2019; Niemeier &

Burnett, 2001). The family dynamics are altered in order to suit the needs of


essentially a ‘stranger’. It has been observed that the repatriation of an

individual post TBI back into society can be influenced by the perception and

reactions of family members (Evans, 2012). The reaction and response of the

family is linked to the extent of damage on the brain, and also the

psychosocial factors of the individual with TBI. For instance, the level of

insight and awareness of the individual with TBI of their behavioural and

emotional disturbances can influence the family response to these changes,

and subsequently impact the quality of care provided at home (Evans, 2012).

2.4.1 The Impact of Socio-demographic Features on Family Caregivers

Previous studies have found that socio-demographic variables of

individuals with an ailment as well as those of the caregivers impact the

welfare of the family caregiver (Dauphinot et al., 2016). Factors such as the

gender, age, kinship, level of education, occupational status and marital status

have all been found to have an influence on the caregiver experience or the

burden as a result of caregiving (C Jourdan et al., 2013; Tramonti,

Bongioanni, Leotta, Puppi, & Rossi, 2015). In general, the ‘healthy’ female

family member is assigned the role of caregiving. But female relatives often

neglect their own health and are at risk of developing anxiety or depression or

an overall state of poor physical health, as a result of the burden of caregiving

(Iwata & Horiguchi, 2016; Schrank et al., 2016). Additionally, the kinship

shared between the caregiver and the care recipient affects the experience of

caregiving. There have been notable differences in the perception of caring

among groups of adult siblings (Namkung, Greenberg, & Mailick, 2016),

parents, spouses and adult children (Juntunen et al., 2018; Kaizik et al.,


29

2017). While all the different kin experience burden or stress, the sources of stress,

the perception of caring and the general caregiving experience between them varies.

For instance, caring for a sick spouse tends to strain the relationship between the

partners, or even the amount of time allocated to caregiving for any other ailing

member of the family itself can strain the marriage of the family caregivers (Kratz,

Sander, Brickell, Lange, & Carlozzi, 2017). Other factors such as the level of

education and occupational status have been determined to be predictors of the

cognitive deficits after a TBI, which can impact the caregiver burden (Rassovsky et

al., 2015). In addition to coping with these cognitive deficits, family caregivers are

also expected to perform multiple roles, such as parent, employee, caregiver etc.

They have to care for other dependents, secure a financial income and maintain their

employment, in addition to their responsibilities to the individual with TBI

(Anderson, Daher, & Simpson, 2019). This is particularly because post TBI, most

individuals are unable to resume their tasks and responsibilities prior to the injury

(Silverberg, Panenka, & Iverson, 2018), leaving them dependent on their

caregiver(s).

2.4.2 The Impact of Culture on Family Caregiving

The term ‘culture’ is defined as a set of common values, beliefs, traditions,

symbols, languages, goals and social organisation shared by members of a group and

the commonality among the members of the group, and the differences from other

groups sets them apart (Aranda & Knight, 1997; Sewell, 2004). In 1997, Aranda and

Knight (Aranda & Knight, 1997; Sewell, 2004) proposed that culture and ethnicity

plays a vital role in the experiences of individuals as caregivers and thus affects the

outcome of the process of caregiving such as the burden experienced or the style of


coping adopted. The influence of culture and ethnicity on the act of

caregiving itself and the expression of burden is significant, as various

reasons may contribute to the stress associated with caring, as well as the

adopted methods of coping among these various cultures (Kim & Knight,

2008; Kim, Knight, & Longmire, 2007).

2.4.3 The Concept of ‘Self’ and Familism in Caregiving

Research has indicated that the impact of culture on the perception

and delivery of caregiving is substantial. In understanding the experiences

and perception of caregivers in various ethnic groups, it is necessary to

understand the role of the ‘self’ in the different cultural contexts. According

to Landrine (Landrine, 1992), the ‘self’ in western cultures is described as an

“autonomous entity”, wherein choice of lifestyle is focused on self-

gratification and controlling the environment to align with his or her own

needs and goals. Thus, the act of caregiving in these populations, with its

demands and unpredictable nature, can be perceived as a threat to one’s self-

preservation and can subsequently cause personal turbulence and burden.

Landrine went on to describe the ‘self’ in non-western populations as

“indexical”, where the self does not exist by itself. The concept of the ‘self’,

and individual goals and privacy are expected to be in alignment with the

needs of the family or community; failure to conform is a violation to the

concept of ‘self’(Landrine, 1992).

In communities such as African-American (Kim et al., 2007) or

Chinese (Bian, 2015), the concept of “familism” plays a role in the shaping of


31

identity. Familism is defined as the strong sense of identity, loyalty, dedication and

attachment one has towards members of the immediate and extended family.

Previous research hypothesised that cultures with a strong familial identity would

experience less depression and burden in contrast to non-familial cultures (Kim et al.,

2007; Knight et al., 2002). However this could not be confirmed as studies showed

varying results on the effect of familism in the context of caregiving (Kim et al.,

2007; Knight et al., 2002). Surprisingly, the studies found that family caregivers in

different ethnicities which encouraged feelings of familism experienced higher

caregiver distress (Knight et al., 2002; Knight & Sayegh, 2010; Losada et al., 2010).

It has been theorised that the distress in these cultures might be linked with the

discrepancy between the traditional idea of caregiving and the contemporary form of

caregiving in the current environment of societal change, with the emergence of

nuclear families, westernisation and fast-paced urbanisation (Knight et al., 2002).

2.4.4 Caregiver Literature from the West

There is substantial research on caregiving in Euro-American populations.

Subsequently, various trends of caregiving, the resulting burden, challenges and

coping methods adopted have emerged (Mittelman, 2008; Montgomery & Borgatta,

1989; Montgomery, Gonyea, et al., 1985; Montgomery, Rowe, & Kosloski, 2007; S.

H. Zarit, Bangerter, Liu, & Rovine, 2017). ‘Primary caregivers’ in Euro-American

studies bear the sole responsibility with the support of the clinicians or formal

caregivers in carrying out activities of daily living for the ailing family member

(Dilworth-Anderson, Williams, & Cooper, 1999). Studies have found that these

primary caregivers struggle with feelings of social withdrawal and isolation and are

at risk of developing depression or anxiety or are prone to experiencing crisis in their


interpersonal relations and marriages (Carlozzi et al., 2015; J. Ponsford et al.,

2003; Wedcliffe & Ross, 2001).

Caregivers find their lives altered dramatically and very limited

services are available that cater to their needs (Boschen, Gargaro, Gan,

Gerber, & Brandys, 2007). However, there is an emergence of intervention

techniques catering for the parents, children, spouses and siblings of

individuals with impaired physical or psychological health using telephone or

online social media support systems (Caplan, Bogner, Brenner, Powell, et al.,

2016; Rivera, Elliott, Berry, & Grant, 2008; Wade, Raj, Moscato, & Narad,

2019). As a result, it has been found that these interventions tend to alleviate

the strain and pressure of family caregivers by enhancing their adjustment to

their role (Jeffrey S Kreutzer, Stejskal, Godwin, Powell, & Arango-Lasprilla,

2010; Rivera et al., 2008). The utilisation and success of such interventions

and their effects are yet to be seen among non-western family caregivers.

2.4.5 Caregiving Literature from Non-Western Region

On the other hand, very limited studies have been conducted on the

features of non-western family caregivers. In fact, findings from studies

outside of the Euro-American context showed that family caregivers were

more distressed about factors in the environment that were not conducive to

caring behaviors than having the role of family caregiver itself (Mazlan,

Ghani, Tan, & Subramanian, 2016). In China, a study found that the initial

response to the injury is much like one’s response to the grief or bereavement

process involved in the death of a relative of member of the family; however,


33

there appears to be a prevalent feeling of self-worth among the family caregivers of

individuals with TBI (Man, 2002). Caregivers feel empowered as they are the vials

of knowledge in the history of the individuals with TBI and are the ones that usually

interact with the health care provider. The study found that family caregivers in

China were more motivated as a result of personally held belief systems and self-

appraisal, rather than social factors. As a result, they appeared to have efficiently

coped with the role of caring for an individual with TBI (Man, 2002). In most Asian

countries, the role of family caregiver is shared by the members of the larger family

and the community and is part of the filial duty of the members of the family and an

expression of filial piety (Pan et al., 2017).

In the Kingdom of Saudi Arabia, caring for an ailing family member is

viewed by healthier family members as a source of pleasure and personal enrichment

and family caregivers persist in taking care of the sick individual in spite of having

limited or no access to resources or information (Abdelmoneium & Alharahsheh,

2016; Sibai, Rizk, & Kronfol, 2014). Women in Asian cultures are often forced to

bear the responsibility of providing the majority of care to the individual with TBI,

and this increases the risk of gender based caregiver burden (Adelman, Tmanova,

Delgado, Dion, & Lachs, 2014). However, there have been contradictory findings in

the literature regarding the association between gender and burden. In Jordan,

although women are socially sanctioned to be the caregivers to an ill family member,

they experienced a better quality of life than males and may be capable of responding

to caregiving in a more adaptable manner (Dalky, Qandil, Natour, & Janet, 2017).


Additionally, it has been found that family caregivers in non-western

countries like Malaysia are generally not distressed by the ‘burden’ of caregiving, but

rather by the factors in their life that were not supportive to their individual with TBI

or their families, such as financial instability or unemployment (Mazlan et al.,

2016). Interestingly, all the family caregivers, regardless of ethnicity, often

cope better with physical impairments as a result of TBI, but experience more

strain in trying to manage the unpredictable nature of cognitive and

behavioural problems post TBI (Cavallo & Kay, 2005; Liang et al., 2016).

Thus, it is evident that the extraordinary influence of cultural values

and personally held belief systems cannot be ignored in the study of

experiences of family caregivers. What can be described as a ‘burden’ in

some cultural contexts, might not be reported in another culture. The impact

of this feature is yet to be determined among the Omani family caregivers.

2.5 CHALLENGES OF THE FAMILY CAREGIVER

Owing to the large expense incurred in medical costs resulting from

RTC related injuries and the costs or lack of adequate rehabilitation, the

medical care system depends on family members to care for their ailing

relative after the TBI. This dependence is at varying degrees during the stage

of hospitalisation, to discharge and then subsequent home care and follow up.

Medical practitioners continue to depend on family caregivers to accompany

patients on hospital visits and provide a medical history such as past

diagnosis, medication and treatment, which is vital information for the on-

going formal care required for the individual (Schulz et al., 2016b). Thus, the


35

availability of family caregivers is an asset to medical care as it reduces the length of

stay of patients in the hospital and is cost beneficial to the community (Lavelle,

Mancuso, Huber, & Felver, 2011). Studies on the experiences of the family

caregivers have found that their burden begins on transfer from hospital care to the

home setting, when they start to attend to the patient alone: they may or may not be

adequately equipped with information on how to deal with physical or cognitive

changes after TBI (Benjamin Turner et al., 2007).

2.5.1 Inadequate Preparation for Caregiving Role

Once the maximum level of physical health has been acquired, through

physiotherapy and rehabilitation, caregivers succumb to the strain involved in having

to manage the unexpected nature of emotional dysfunction commonly prevalent after

TBI, such as depression, cognitive impairment, memory loss, psychosis, anxiety and

so on. Since medical care focuses more on the physical well-being of an individual

post TBI, this results in inconsistencies in the expectation of the family caregivers for

a full recovery versus the reality of living with an individual who has incurred TBI

and will therefore likely experience subtle to very prominent cognitive impairments

and behavioural changes. Another qualitative study has found that family members

caring for an individual with TBI often feel poorly prepared for the changes that are

associated with brain injury, and thus move from ‘crisis-to-crisis’ with inadequate

information, resulting in higher burden and stress, so caregivers tend to provide an

ineffective level of care (Rotondi, Sinkule, Balzer, Harris, & Moldovan, 2007). As

time progresses, many family caregivers find that they feel better equipped to cope

with the physical disabilities post the RTC, but the unpredictable nature of cognitive

impairments as a result of the brain injury pose a greater stressor to the individuals in


the family unit (Baker, Barker, Sampson, & Martin, 2017). Caregivers cope

better with physical impairment of the individual post TBI, due to its

predictable and manageable nature, in comparison to emotional, behavioural

and personality disturbances, and this is further compounded by the

heightened level of insight a patient may have into his injury, which is often

lacking in cognitive impairment (Uzzell & Stonnington, 2014). The level of

burden experienced can also impact the quality of care given, which

subsequently affects the level of functioning and the rate of rehabilitation of

individuals with TBI (Lehan, Arango-Lasprilla, de los Reyes, & Quijanod,

2012).

2.5.2 Strained Interpersonal Relationships

Relationships with the family are often strained after the role of

family caregiver is adopted, because the responsibilities of caring for an

individual with TBI can interfere with the expectations of other social roles

that need to be fulfilled, as caregiving can be a gruelling and time consuming

task (Butera-Prinzi & Perlesz, 2004). For instance, a 2017 study found that

children may have to come to terms with the realisation that the healthy

parent may be preoccupied tending to the needs of their spouse or partner

post TBI, thus losing both parents in this process. This resulted in the children

experiencing a range of emotions such as anger, love, sadness, guilt and

anxiety (Rohleder, Lambie, & Hale, 2017). In turn, the life satisfaction and

perceived social support offered to the family caregiver is a strong indicator

and predictor of the functional and psychological well-being of the individual

with TBI who is receiving the care (Vangel Jr, Rapport, & Hanks, 2011).


37

Nevertheless, caregiving may come at the price of marital conflict, social withdrawal

and isolation or neglecting other dependants.

It has been found that caregiving results in different psychological adjustment

outcomes between a parent and a spouse, and it has been suggested that parents cope

better with the adjustments to be made post TBI as they feel supported by their

spouse, while spouses find themselves isolated, unprepared and tending to the needs

of their partner (Serio, Kreutzer, & Gervasio, 1995). Children caring for a parent

with TBI experience more anger, while parents are more prone to depression (Uzzell

& Stonnington, 2014) . The reversal of roles is an interesting phenomenon that takes

place in caring, i.e. the parent with TBI becomes the child, and the care giving adult

child becomes the parent. Individuals with TBI and their respective family caregivers

have endorsed a need for patience while coping with the persistent personality

changes after the injury, including memory loss, fatigue and anger (Adams &

Dahdah, 2016). It is apparent that regardless of one’s relationship with a survivor of

TBI, or the differences that occur within the caring process, there is an elevated risk

of anxiety and depression among all caregivers (Ennis, Rosenbloom, Canzian, &

Topolovec-Vranic, 2013; J. Ponsford et al., 2003; J. Ponsford & SchÖNberger,

2010).

2.5.3 Caregiver Depression and Anxiety

A French study among couples caring for an individual after TBI showed

that 56% of the caregivers experienced significant burden, while the onset of clinical

depression was evident in 44% of them one year after the injury had been incurred

(Bayen et al., 2013). The lack of preparedness for the behavioural and neurological


changes that follow TBI renders family caregivers vulnerable to

psychological burden, thus impairing their quality of life, which in turn

negatively impacts the quality of care giving (Lehan et al., 2012). Women are

more often the primary caregiver, and are more prone to stress than male

caregivers (Navaie-Waliser, Spriggs, & Feldman, 2002). It has been further

reported that after one year of care giving, depression and anxiety were also

accompanied by poor social adjustment among the care giving family

members (N. V. Marsh et al., 2002). Unfortunately, caregivers are often

termed the ‘hidden patients’ as they tend to overlook their own physical and

emotional health in order to be able to fulfil their role as the family caregiver

(Buckley, Tran, & Prandoni, 2004; Burden & Quite, 2000; Kipp, Tindyebwa,

Rubaale, Karamagi, & Bajenja, 2007; Van Ryn et al., 2011). A few studies

have found that family caregivers resort to the “Command Performance

Syndrome”, which is a semblance used to conceal their inability to cope with

the situation in front of the patient and physicians, and therefore not requiring

psychological intervention or social support (Sbordone, Kral, Gerard, & Katz,

1984).

2.5.4 Social Withdrawal and Impaired Quality of Life

Family caregivers find themselves preoccupied with caring for the

individual with TBI at all times as they feel that the sick family member

needs them more than the rest of the family, and the desire to be away from

them results in guilt (Jumisko et al., 2007). This results in the family

caregiver avoiding social behaviours and intimacy with other members of

their family, and they sacrifice their own leisure in order to be available for


39

the individual with TBI (Braine, 2011; Jumisko et al., 2007; Hélène Lefebvre &

Levert, 2012). Consequently this leads to an impaired quality of life and less time for

the caregiver to pay attention to his or her own needs (N. V. Marsh, D. A. Kersel, J.

H. Havill, & J. W. Sleigh, 2002).

2.5.5 Inadequate Rehabilitation and Medical Services

Once families no longer need to focus on the 'life and death ' crisis in the

ICU, their attention turns to the needs of the individual in their care with TBI and

specialised rehabilitation. Accessing and acquiring appointments or being able to

afford the post ICU care is a challenge many families face. TBI at this stage of

transition to complete home care, has not only compromised the life of the individual

with TBI, but has affected the well-being of family members, and other members in

society who are associated with the individual in question (Butera-Prinzi & Perlesz,

2004; Hammond, Davis, Whiteside, Philbrick, & Hirsch, 2011; Man, 2002).

Therefore, it is recommended that the transition phase from the hospital to the family

home where the care is provided be part of the rehabilitation process for patients and

their family members; the overall treatment plan should be ‘family-focused’ (Ben

Turner et al., 2010).

2.5.6 Long-term Care and Financial Strain

Often, the care required for TBI extends over a long period with varied

demands over time. Such extended care has been found to be a clear indicator of

distress among the family members caring for the individual with TBI (Hart et al.,

2012; N. P. Ryan et al., 2016; Schönberger, Ponsford, Olver, & Ponsford, 2010;


Theadom et al., 2016). Lezak described five common features that individuals

with TBI express, which can be unrelenting on the family. These features are

namely, 1. heightened self-centeredness, marked with no empathy, 2.

decreased self-regulation and poor impulse control, 3. a decline in executive

functioning, such as planning and memory, 4. significant personality changes

such as irritability, depression, outbursts of anger and aggression, and 5.

perseverative behaviours with a minimal tendency to be flexible (Muriel

Deutsch Lezak, 1978; Muriel D Lezak, 1986, 1988). Additionally, families

find themselves in the clutch of financial strain because of expensive medical

treatment, insufficient salary or inability to find employment (Nigel V Marsh

et al., 2002; Mazlan et al., 2016; Alexis Ruet et al., 2018; Sabella,

Andrzejewski, & Wallgren, 2018). Many individuals after TBI are unable to

find suitable employment or return to their occupations, and this leads to the

family caregivers taking on added responsibility to provide for their care

recipient, other dependants and to make ends meet (Dahm & Ponsford, 2015;

J. L. Ponsford & Spitz, 2015).

2.6 COPING AS A CAREGIVER OF AN INDIVIDUAL WITH TBI AFTER

ROAD TRAFFIC CRASH

RTCs have a traumatising effect on the individual and their families,

particularly if they claim lives or cause life-altering injuries (Breen &

O'Connor, 2011; Syed Hassan, Jamaludin, Abd Raman, Mohd Riji, & Wan

Fei, 2013; WHO, 2007). Family caregivers have to manage their grief and

strain with limited support as they ordinarily cannot prepare for the

responsibilities that accompany living with TBI (Breen & O'Connor, 2011;


41

WHO, 2007). Studies on family caregivers have identified that certain social and

personal characteristics of the family caregiver have a revitalising effect on their

experiences. The availability of family and social networks and family focused

medical resources or interventions have proved to be vital in relieving the family

caregivers from experiencing the negative effect of their role (Caplan, Bogner,

Brenner, Powell, et al., 2016; Rivera et al., 2008; Wade et al., 2019). A clear channel

of communication between the family caregivers and the relevant people in their

environment such as their extended family, friends and clinicians improves the status

of the family caregiver and alleviates the feeling of isolation (Gan et al., 2010;

Jumisko et al., 2007; Phelan et al., 2011; Schutz et al., 2017). Social support can be

extended by the community in the form of support groups or religious groups, and

from psycho-educational interventional programs (Caplan, Bogner, Brenner, Powell,

et al., 2016; Rivera et al., 2008; Wade et al., 2019).

Family caregivers have found that being aware of the implications and

treatment of TBI empowers them and helps them feel prepared for the unknown.

Personal characteristics such self-resilience and belief systems or religious teachings

of the family caregiver adds to their ability to cope and reinterpret what can be

regarded as a difficult situation (Al-Adawi et al., 2012a; Al-Adawi et al., 2012b;

Corallo et al., 2019; Downing & Ponsford, 2016; Simpson & Jones, 2013). It has

been found that caregivers willingly undertake the responsibility of caring for an

individual with TBI for whom they expressed positive feelings, regardless of the

difficulty (Hélène Lefebvre & Levert, 2012), and filial obligation can be of value,

particularly among adult children who are caring for their parents with TBI (Pan et

al., 2017). However, the availability of these resources and facilities are scarce and


the role of caregiver in the instance of RTC is a sudden change, leaving very

little room for preparation. To our knowledge there are very few studies on

the coping mechanisms of family caregivers of individuals that have survived

an RTC and particularly, family caregivers of individuals with TBI after an

RTC.

2.7 THEORIES OF CAREGIVER BURDEN

Many theories can help understand the expression of the burden of

family caregivers. In this study, the author will draw on the principles of

Family Systems Theory, Role Theory and two Stress Process Models.

2.7.1 Family Systems Theory

According to Bowen (2018), the emotional well-being of a family is

directly related to the physical, emotional and spiritual well-being of each

individual within that family unit. He has been credited with the ‘Family

Systems Theory’ which describes a family as an emotional and social unit, in

which the individuals cannot be understood in isolation. According to him, a

cause-and-effect of behaviors exists within a family. For example, the

compromised health of a husband might result in his partner having to bear

his responsibilities in addition to his/her own, thus elevating the risk of

succumbing to emotional saturation or burden, subsequently affecting other

members of the family. Thus, TBI has the potential for negative repercussions

in having to care for a disabled family member.


43

2.7.2 Role Theory

According to Biddle (1986), human behaviour is determined and can be

predicted by expectations of others and of self, and it can vary from one situation to

another. Biddle likened human behaviour to “roles” adopted by actors in a play,

where each actor plays a part, and adopts the character of the part.

“Thus, role theory…is said to concern itself with a triad of concepts:

patterned and characterised social behaviour, parts or identities assumed by

social participants and scripts or expectations for behaviour that are understood

by all and adhered to by all the performers” (Biddle, 1986, p.69).

People are likely to adapt to the role and behave predictably if the expectation

between their own beliefs and the expectations of others are synchronised. However,

sometimes individuals struggle to adhere to the expectations of their peers in society,

which results in what is termed as “role conflict”. These conflicts give rise to stress

and are due to a range of circumstances, such as Ambiguity, Malintegration,

Discontinuity and / or Role overload” (Biddle, 1986). Ambiguity occurs where the

expected behaviour is unclear to the individual or to those around them.

Malintegration takes place where the roles played by an individual and the

expectation within each role vary widely between each other. Discontinuity is

experienced where the malintergrated roles occur in a sequence. Finally, Role

overload is experienced where too many roles and expectations are adopted and the

individual is unable to fulfil these expectations (Biddle, 1986). These concepts are

very important, particularly in caregiver studies, where culture, gender, age and time

play a significant role in the caregiving experiences. Many cultures have defined


gender roles in caregiving, where women play the nurturing role of companionship,

comforting or listening and speaking to the care recipient, while men perform more

instrumental functions like earning an income or transportation (Penning & Wu,

2015; Stein, 2009; (Elmahdi et al., 2011). Additionally, certain cultures expect

women to be submissive and take on the role of caregiving, and expression of their

burden might be considered dishonourable. Consequently, it has been found that in

these cultures, the stress experienced as a result of caring is higher (Friedemann &

Buckwalter, 2014; Penning & Wu, 2015), as a result of these expectations of the

community on the behaviour of the family caregiver.

2.7.3 Pearlin’s Stress Process Model

Figure 2.1. Pearlin Stress Process Model

Research into caregiver burden is also influenced by Pearlin’s theory of stress

(1990). The Pearlin Stress Process Model (refer to Figure 2.1) divides experiences of

stress into primary and secondary stressors. Primary stressors are the main cause for

the stress, or the point that initiates a stressful reaction, while secondary stressors

occur as a result of primary stress. Pearlin also talks about the impact of ‘mediators’

in the stress experience, which is a coping mechanism in the form of social support


45

or familial support, factors that can also impact burden. These three factors interact

with one another and affect the well-being of an individual. Pearlin et al. (1990)

identified the process of caregiving as a primary stressor, while the anxiety or

depression arising from the experience is regarded as a secondary stressor (Pearlin,

Mullan, Semple, & Skaff, 1990).

2.7.4 Yates Stress Model

Figure 2.2. Yates Stress Model

Aligning with Pearlin’s theory, Yates (1999) formulated a framework of

stress to shed light on the caregiver experience and a rationale behind the burden or

strain that they faced (Figure 2.2). In her model, primary stressors and secondary

stressors along with the contextual background of the family caregiver can impact

the perception and understanding of the process of providing care (Yates, Tennstedt,

& Chang, 1999). Contextual factors included the type of care and the time involved

in caring, depending on needs at the time of onset and the diagnosis of the recipient

of care. For instance, certain illnesses such as cancer compromise the physical health

of an individual and are also progressive, thus allowing family caregivers time to


prepare themselves for the duration and changes in caregiving style based on

needs in the different stages of the illness.

However, in cases such as the present study, TBI caused by RTC is a

sudden event and an individual is thrust into the role of caring without

preparation. Additionally, the consequences of TBI are usually cognitive

impairment, and thus the needs of the individual with TBI would be different

from an individual with cancer (Bastawrous, 2013). Yates further described

that “overload” is subjective or secondary burden and is caused by how the

family caregiver perceives the process and demands of caregiving. Overall,

the caregiver stress model is based on the principles of Pearlin’s stress theory.

Various factors interact with one another and impact the level of stress

experienced by an individual, and this experience varies from one person to

another based on one’s context and environment (Yates et al., 1999).

The people of Oman abide by traditional customs of collectivism.

Thus, the welfare of one individual can impact the functioning of the family

unit that he or she is a part of. Various social roles are played by one

individual, and individuals in this collectivistic unit cohabitate based on the

expectations and performance on these varied social roles. This would imply

that a family caregiver might also be parent, sibling, child and employee, and

with each role, individuals within each social unit have particular

expectations and obligations which they are required to fulfil. With the added

role of family caregiver within contextual features like culture, gender,

religion, marital status and so on, it is important to gauge the impact that the


47

responsibilities and expectations of this role have on the experiences of caregivers in

Oman. Additionally, in this region, an illness of one individual within the community

is a burden shared by the extended family as well as the community one is a part of.

These unique features can be explored further in order to understand how

caregiving works within the Omani family unit. The theories outlined above can be

used to interpret and analyse the styles of coping and adjusting to caring for

individuals with TBI in Oman. The roles adopted, and the stress experienced by the

process of caregiving for an individual with TBI after an RTC is understudied,

particularly in countries like Oman. This study aims to shed light on the lived

experiences and burden of Omani family caregivers, without negating the importance

of the cultural context and belief systems in the region.

2.8 GAPS IN THE LITERATURE

To our knowledge, there are no studies from the Arab countries evaluating

the experiences of family caregivers after a relative has been diagnosed with TBI

post RTC. Very limited research on this topic has also been conducted in no-Euro-

American countries, and general caregiver literature is predominantly from such

cultures. Thus, this study is a preliminary attempt to understand the experiences of

family caregiver in integrated communities like Oman, following the trauma of TBI

from an RTC.


2.9 GOAL OF THE STUDY

Taking into account the impact of TBI symptoms and contextual features such as

culture, gender roles, belief systems, social and support system on the perception and

experiences of burden, this study aims to highlight the burden and the lived

experiences of family caregivers of individuals living with TBI after RTC in the

Sultanate of Oman. Through this study, the author hopes to highlight the need for

further caregiver research and implement family focused medical care.

2.10 RESEARCH QUESTIONS

Based on the available literature and the context within which caregiving is being

researched in this study, the research questions are as follows:

1. What is the impact of the cognitive, behavioural and emotional status of

individuals with TBI after RTC on family caregiver burden in Oman?

2. What is the impact of the demographic features of family caregivers on their

burden?

3. What are the experiences and challenges that family caregivers in Oman

face?

4. What coping mechanisms do family caregivers of individuals with TBI

employ in order to cope with the responsibility of caring?


49

2.11 JUSTIFICATION OF METHODOLOGY

It is important to note that Morse (Morse, 2016) emphasized, “When a

researcher asks a question that cannot be answered using a single method, the

research outcome may be improved by using more than that one method.” (p.13) The

methodology employed for a research study depends upon the characteristics of its

aims. Quantitative research methods are ideal for researchers who wish to acquire

precision in the form of percentages, numbers or ratios in their findings and answer

the ‘how many or how much’ question with regard to the phenomenon of research

interest (McCusker & Gunaydin, 2015). A qualitative technique is used by

researchers aiming to understand a phenomenon of social behavior and acquire

findings through the generation and analysis of words by answering the ‘why, what

and how’ questions of an experience or behavior or attitude (McCusker & Gunaydin,

2015). The raw data collected from the sample for a quantitative study are expected

to be robust, while the process of interpreting the data is of value in a qualitative

study. In mixed methods, often used by behavioral scientists to understand a social

phenomenon, the qualitative method can be used to further explore results from a

quantitative survey (McCusker & Gunaydin, 2015).

Quantitative studies on caregiver burden have been criticized for stripping

away the context and environmental experiences that influence the burden

experienced by an individual (Calderon & Tennstedt, 1998). Numerous studies have

found that the experience of caregiving varies across ethnicities, races and cultural

factors. These are often overlooked in a quantitative study, particularly in African,

Chinese and Korean cultures where expressing burden of care is frowned upon and

gender roles in caring are established and expected as a duty that must be fulfilled


(Calderon & Tennstedt, 1998). In order to overcome these obstacles, mixed

methodologies are recommended in order to understand burden of care within the

context of the experience of caregivers themselves (Bastawrous, 2013). The

mixed methodology is utilised more often in social sciences and continues to

evolve (Creswell, 2013). It takes advantage of the strongest features of

quantitative and the qualitative approaches in order to gain robust data to

answer a complex research question (Greene & Caracelli, 1997; Miles,

Huberman, Huberman, & Huberman, 1994). Methods used to answer the

research question can influence of the outcome of the study, limiting the

sufficiency and objectivity of a mono-method of research (Mayring, 2007) .

Since caregiving in Oman is likely to be a multifarious phenomenon, the

multi-method or mixed method of data collection and analysis was employed

for this study.

2.12 OUTLINE OF RESEARCH DESIGN

As discussed above, caregiver burden among the TBI population has

not been studied in Oman. Although modernisation has fuelled the

emergence of the nuclear family, the family unit in Oman typically consists

of the extended family. Therefore, it is likely that the role of ‘primary

caregiver’ is a more complex phenomenon and is shared among the members

of the family, with each holding a particular responsibility (Al-Saadoon &

Al-Adawi, 2019; Hodges, 2015). Additionally, the presentation of symptoms

and the level of severity of the injury can influence the burden, if any,

experienced by family members in Oman. In order to answer the research

questions, the sequential, mixed and explanatory model, using both


51

quantitative and qualitative methods was employed (Creswell, 2013). This approach

aims at enhancing the findings from the quantitative data, followed by a larger

qualitative study to explore the general lived experiences of family caregivers in

Oman.

The study was divided into Study 1 and Study 2. Study 1 used mixed

methodology where the trends identified through multiple case study interviews were

used to explain or interpret the data collected quantitatively through the

psychological instruments. The responses on the assessments were analysed with

correlation, trends and descriptive information of the participants. The findings of the

quantitative study was complemented with the case study method to further explore

the burden of care. Study 2 was a larger qualitative study which explored the lived

experiences of the family caregivers of individuals with TBI in Oman.

Thus, the overall structure is presented in Figure 2.3:

Figure 2.3. Study Design


2.13 HYPOTHESES OF THE STUDY

Using this research structure, the following hypotheses were generated for the

present research:

1. The level of cognitive, emotional and physical functionality post TBI would

have an impact on the burden experienced by the family caregiver.

2. Socio-demographic elements such as age, gender, culture, level of education,

occupational status, marital status and the extent of social support impact the

burden of the family caregiver.

3. The caregiver experience in Oman is impacted by its cultural features.

Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post

Road Traffic Crash

53

Chapter 3: Study 1- Examining the Burden

of Family Caregivers in Oman of

Individuals with Brain Injury

post Road Traffic Crash

As revealed in the previous chapter, caregiving for an individual with TBI

can be a challenging ordeal, as it tends to impact the entire life of the people

involved. However, the health and well-being of family caregivers are often

overlooked and under-studied, despite the impact they have on the welfare of the

individual with the injury (Vangel Jr et al., 2011). It is thus important to understand

the burden experienced by family caregivers in order to be able to provide suitable

family-focused health services. This study is based on family caregivers of

individuals living with TBI after an RTC in the Arab country of Oman, where there

is a significant dearth in literature in this field.

3.1 INTRODUCTION

Road traffic crashes usually occur within a matter of seconds and then can

have life-changing effects on the individuals involved, their family members and the

community they are a part of, for a long period of time (Franzén, Björnstig, &

Jansson, 2006). Various injuries are associated with RTC, and TBI is one of the most

common (Roozenbeek, Maas, & Menon, 2013). Most survivors of TBI tend to

sustain lasting physical as well as emotional damage (Andelic et al., 2018; Konrad et

al., 2011) and very often do not have the access to long-term medical facilities for

rehabilitation and care (Gan et al., 2010). Therefore, after discharge from the

hospital, clinicians depend on family caregivers to continue to provide care in their

54 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post

Road Traffic Crash

home and accompany the individual for their routine hospital visits (Schulz et al.,

2016a). As a result of the availability of family caregivers, society stands to benefit

economically and socially as the amount of time and resources allocated to in-patient

care in the hospital are reduced (Lavelle et al., 2011).

Physical impairments are highly associated with TBI, leaving individuals

with the injury dependent on their family caregivers for their daily living activities

such as bathing, eating or movement (Barrio et al., 2016). With time, while most

family caregivers find that they are able to adjust to the compromises associated with

impaired physical functionality after the RTC, they struggle with understanding and

coping with the unpredictable nature of the behavioral and neurocognitive

disturbances that arise as a result of brain injury (Lehan et al., 2012; Nigel V Marsh

et al., 2002). Taking into account the post TBI changes, the family grieves over the

‘loss’ of the normal life their relative led before the accident. They have to re-adjust

to living with the same relative, who has significantly changed and may show

marked symptomatic behaviors, aggression, fluctuating moods, poor impulse control,

cognitive and behavioral impairments and overall change in their personality and

ability to self-regulate (Braine, 2011; Degeneffe, 2019; Helene Lefebvre, Cloutier, &

Josée Levert, 2008; McAllister, 2008). According to previous research, these

personality and physical changes after TBI result in a high dependence on the family

caregiver and subsequently research has shown a high incidence of subjective burden

on the family caregivers that can last 15 years or longer post TBI (Andelic et al.,

2018).

Due to the amount of time allocated to caring for an ailing family member,

family caregivers are prone to self-neglect, social isolation, depression, anxiety, grief

and guilt (Degeneffe, 2019; Jumisko et al., 2007; Kratz et al., 2017; Jeffrey S


Road Traffic Crash

55

Kreutzer, Serio, & Bergquist, 1994; Nigel V Marsh et al., 2002). In fact, the duration

and extent of care provided eventually limits the social life of the caregivers, and

they find themselves isolated and devoid of social support (N. V. Marsh et al., 2002;

Phelan et al., 2011; Wade et al., 2002). The caregiving family often undergoes

restructuring with new roles for various individuals within the family in order to

effectively impart care (Bowen, 2018; Carnes & Quinn, 2005; Livingston et al.,

2010) and this may result in numerous interpersonal conflicts (Braine, 2011; Hélène

Lefebvre & Levert, 2012). Moreover, family caregivers also have to bear sole

responsibility for instrumental activities of daily living such as earning an income or

maintaining employment (Brault, 2012). Many TBI survivors do not return or are

unable to find suitable employment or maintain their occupational status (Dahm &

Ponsford, 2015; J. L. Ponsford & Spitz, 2015). This leaves the family caregiver in

complete charge over their financial affairs, care for other dependents and added

work responsibilities (Ketzeback, 2012; Jeffrey S Kreutzer et al., 2009). However, in

order to feel like they are ‘present’ for the individual with TBI, many family

caregivers do not seek medical attention and they unknowingly or knowingly neglect

themselves (Merluzzi, Philip, Vachon, & Heitzmann, 2011).

It has been suggested that cultural and ethnic characteristics of the family can

impact the way the process of caregiving is provided and perceived (Aranda &

Knight, 1997; Barrio et al., 2016; Sewell, 2004; Willis, 2012). Collectivistic and

inter-dependent cultures find that the members of the community come together to

‘care for their own’ (Willis, 2012). In these communities where family well-being is

a priority, family caregivers tend to compromise on their own self-care in an effort to

provide the individual with TBI a nurturing and loving environment in which they

are readily available (Barrio et al., 2016). Some cultures expect females exclusively


Road Traffic Crash

to run the duties of caregiving in the home, and this leaves them at risk of a

compromised mental and physical well-being (Sharma, Chakrabarti, & Grover,

2016). It may also be frowned upon to express the discomfort associated with the

task of caring for an ailing or needy member of the society, particularly within the

family circles (Friedemann & Buckwalter, 2014; Penning & Wu, 2015).

As pointed out in Chapter 2, most of these findings are based in Western

literature and although similar findings can be anticipated from an Islamic,

collectivistic culture such as Oman, this is yet to be confirmed. TBI resulting from

RTC has been a crisis in Oman (Al-Kashmiri et al., 2015) and while much literature

has emerged about the neuropsychiatric sequelae of TBI from this region, to our

knowledge there are no studies evaluating the impact of TBI sequalae on the burden

experienced by family caregivers in Oman. The culture and heritage of Oman is rich,

marked with principles of collectivism and interdependence and religious beliefs.

These features might impact the burden experienced by family caregivers and this

needs to be studied, in particular because the behavior and attitude of family

caregivers towards the individual with TBI have a profound effect on their

rehabilitation into society and their overall well-being (Kurowski et al., 2011; Lehan

et al., 2012; Rasmussen et al., 2019). In light of these cultural and religious factors,

this study will evaluate the burden experiences of family caregivers in Oman.

The present study utilised mixed methodology to examine and explore the

burden of family caregivers in Oman of individuals living with TBI caused by an

RTC. Part 1 comprised quantitative assessments to assess the level of burden of the

caregivers, and the emotional, cognitive and functional abilities of the individual

with TBI. In Part 2, the author selected six family caregivers with the highest and

lowest burden to participate in a case study.


Road Traffic Crash

57

3.2 PART 1: QUANTITATIVE STUDY

3.2.1 Aim

The inter-related aims of this study in Oman are to examine the burden

experienced by family caregivers of individuals with TBI after an RTC as a result of

the cognitive and behavioral sequalae of TBI. Additionally, it is important to

examine the impact of the socio-demographic profile (marital status, relationship

with care recipient, age, gender, level of education, number of dependents of the

caregivers and occupation status) of the family caregivers and the care recipient on

the burden experienced by the family caregiver.

This study examined this under-explored phenomenon in Oman and acts as a

preliminary attempt to fill the identified gap in the research literature. The following

two hypotheses were explored:

1. The cognitive, emotional and physical functionality post TBI of the

individual who has had an RTC impact on the burden experienced by the

family caregiver.

2. The socio-demographic factors of the individual with TBI after the RTC and

their family caregiver impact the caregiver burden experience.

3.2.2 Method

3.2.2.1 Participants

The participants were divided into Group 1 and Group 2. Group 1 were the

36 family caregivers and comprised of a majority of males. Most of the family

caregivers were members of the immediate family, such as parents, spouses or

children. Almost half of the family caregivers were employed and almost all of them

had other dependants under their care as well. The 36 individuals with TBI after


Road Traffic Crash

having been in an RTC were categorised as Group 2, and in alignment with the

existing literature, most of them were young and were of the male gender. Most of

the participants in Group 2 were students and were unmarried. More details on the

two groups can be found in Table 3.1.

Table 3.1

Characteristics of Family Caregivers and Individuals with Traumatic Brain Injury

GROUP 1: FAMILY CAREGIVERS

Variable n (%)

Gender

Male 21 (58.3)

Female 15 (41.7)

Age, mean±SD 38.64±13.25

Relationship with individual with TBI

Immediate family 22 (61.1)

Extended family 14 (38.9)

Occupational status

Employed 17 (47.2)

Student 4 (11.1)

Unemployed 15 (41.7)

Education

Primary school 25 (69.4)

Completed 12 years of school 9 (25.0)

University education 1 (2.8)

Informal education 1 (2.8)

Number of other Dependents

Upto 5 8 (22.2)

5-10 17 (47.2)

>10 4 (11.1)

None 7 (19.4)

Primary caregiver

Participant 18 (50.0)

Spouse 6 (16.7)

Shared roles in the family and/or community 12 (33.3)

GROUP 2: INDIVIDUALS WITH TBI

Gender

Male 28 (77.8)

Female 8 (22.2)

Age, mean±SD 25.89±9.97

Marital status

Single 24 (66.7)

Married 8 (22.2)

Engaged 2 (5.6)

Divorced 2 (5.6)

Education

Primary school 5 (13.9)

Completed 12 years of school 21 (58.3)

University education 5 (13.9)

Informal education 5 913.9)

Occupational status

Employed 10 (27.8)

Student 14 (38.9)

Unemployed 12 (33.3)


Road Traffic Crash

59

3.2.2.2 Measures

Below is the description of the measures used in Part 1 of the Study I.

Zarit Burden Scale (ZBS) The caregiver burden was measured using the ZBS

(S. Zarit, Orr, & Zarit, 1985). This measure and its variations have been administered

on a variety of caregivers tending to the needs of individuals with various diagnoses,

including TBI (Harding et al., 2015; Siegert, Jackson, Tennant, & Turner-Stokes,

2010). This commonly used assessment of burden consists of 22 items, originating

from a 29-item preliminary assessment (S. H. Zarit, Reever, & Bach-Peterson, 1980).

The responses are based on the extent to which a caregiver has experienced the

feeling described in each item on the ZBS. They indicate this on a 4-point scale

between 0= Never, 1=Rarely, 2= Sometimes, 3= Quite Frequently and 4= Nearly

Always. The cut-off scores are then interpreted as “No burden”, “Mild to Moderate

burden”, “Moderate to Severe burden” and “Severe burden” using the Likert scale

shown in Table 3.2 (Hébert, Bravo, & Préville, 2000). The Arabic translation of the

ZBS was tested and re-tested for its reliability which was 0.71 and the Cronbach’s

alpha co-efficient was calculated as 0.66 (Hussein, Elsayed, & Elsaied, 2015).

However, to our knowledge, this instrument has not yet been standardised to the

Omani population, but has been used in previous research (Al-Balushi et al., 2019;

N. Al Balushi, Al Shukaili, & Adawi, 2017; Al Maqbali & A-Sinawi, 2016).

Montreal Cognitive Assessment- Arabic (MoCA) The MoCA developed by

Nasreddine and colleagues (Nasreddine et al., 2005) is used extensively on the

geriatric population in order to detect the level of cognitive decline in degenerative

diseases of the central nervous system . It is a 30-item questionnaire administered to

assess the level of cognitive functioning of an individual (de Guise et al., 2014;


Road Traffic Crash

Zhang et al., 2016). The items on the sub-tests of the MoCA measure executive

functioning, memory, attention, language and orientation (Julayanont & Nasreddine,

2017). It has been made available freely on the internet in 35 languages, including

Arabic. The test-retest reliability on the Arabic MoCA was 0.92 (p< 0.001), with a

good internal consistency of 0.83 on the Cronbach’s alpha (Rahman & El Gaafary,

2009). 30 is interpreted as 'Cognitively Impaired' on the MoCA (Nasreddine et al.,

2005).

Hospital Anxiety and Depression Scale (HADS) The HADS (Zigmond &

Snaith, 1983) is a commonly used checklist to assess the mood state of an individual.

It comprises a total of 14 items. The scale is divided into two scales of Anxiety and

Depression, with 7 items in each. The responses on the HADS were marked on a 3-

point scale depending on the severity of the problem in each question. The HADS

was back-translated by experienced clinical staff in Oman (Al-Adawi et al., 2007)

and is utilised extensively in research in Oman (Al-Adawi et al., 2016; Abdullah Al-

Asmi et al., 2015; A Al-Asmi et al., 2013; Daradkeh, 2016). The specificity and

sensitivity of the HADS as a screening tool for depression and anxiety among the

Omani population with epilepsy has yielded promising results. Under the ROC

curve, the reliability and validity of the HADS were 0.951 and 0.989 respectively,

which indicate high accuracy (Abdullah Al-Asmi et al., 2012). The cut-off scores on

the sub-scales of the HADS will be based on the original scale as follows: 0-

7=‘Normal’, 8-10= ‘Mild’, 11-14= ‘Moderate’ and 15-21= ‘Severe’ (Abdullah Al-

Asmi et al., 2012; Zigmond & Snaith, 1983).

Functional Independent Measurement Scale (FIMS) The FIMS (Keith,

Granger, Hamilton, & Sherwin, 1987) was designed by the American Congress of

Rehabilitation Medicine and the American Academy of Physical Medicine and


Road Traffic Crash

61

Rehabilitation (Hamilton, 1987). The FIMS comprises of 18 behavioural functions

focusing on the motor and cognitive abilities of a patient. The motor items are

scored on the level of an individual’s functional independence when dealing with

self-care, sphincter control, transfers and locomotion. The cognitive items are scored

based on the level of assistance required communication and social cognition. The

items are rated on a 7-point scale, with the following implication, 1= total assist

(patient performs less than 25% of the activities of daily living), 2= maximal assist

(patient can independently perform at least 25 % of the activities of daily living),

3=moderate assist (50 %), 4=minimal assist (75 %+), 5=supervision (100 %+), 6=

modified independence (use of device) and 7= complete independence (timely,

safely). The maximum score obtainable on this assessment is 126, which is

interpreted as “Functionally Independent”, whereas a minimum score of 18 is

interpreted as “Complete Functional Dependence”. According to Stienman’s original

criteria, overall scores above 70 imply that the individual is functionally independent

and does not require complete assistance from another, while a score below 50

implies that the individual will likely be dependent on another person for the

activities of daily living (Stineman, Maislin, Fiedler, & Granger, 1997). While this

tool is used extensively in in-patient settings, it can be utilised in the out-patient

clinical setting, and data can be collected from observations by the clinician, from the

caregiver, or from the patient themselves (Mackintosh, 2009). A high internal

consistency has been recorded on the FIMS Cronbach’s alpha (0.93-0.95) (Ravaud,

Delcey, & Yelnik, 1999) and the correlation in the inter-rater and test-retest

reliability was computed as 0.95 (Ottenbacher, Hsu, Granger, & Fiedler, 1996).


Road Traffic Crash

3.2.2.3 Procedures

Ethical Considerations

Ethical clearance for this study was granted by the Ethics Committee of the

Ministry of Health and Medical Research Ethics Committee (MREC), College of

Medicine & Health Sciences, Sultan Qaboos University (REF. NO. SQU-EC/5/17

MREC#1508), and the Queensland University of Technology (QUT) Human

Research Ethics Committee (UHREC Clearance Number 1700001048).

Archived Data

Collecting data from individuals with TBI and their family caregivers for

research is challenging, as often the patients and their families are inaccessible for

various reasons relevant to Oman. For example, the long travel for the individuals

from their homes in interior regions to the hospital in the capital city of Muscat, or

practical difficulties of travelling with individuals with debilitating physical or

cognitive impairments, often limit the number of participants in clinical studies.

Therefore, the author of the present study sought permission from the Ageing and

Dementia Research Group (ADRG) SQU to access archived data collected between

2012 and 2016 of individuals with TBI and their family caregivers. The ADRG is a

transdisciplinary research group that acquired funding from the Research Council of

Oman (RC/AGR/FOOD/11/01) to study the effects of Omani-grown fruits on

cognitive status of patients with dementia or TBI. Professor Samir Hamed Al Adawi,

who is the external supervisor in Oman on this research, was the co-Principal

Investigator on the ADRG research study and granted access to the data collected

from 19 pairs of family caregivers and their respective individual with TBI for the

present study (Appendix A).


Road Traffic Crash

63

To increase the sample size, the author of this study collected data from 17

more pairs of consenting individuals with TBI and their caregiver in 2019. The data

were collected in the outpatient unit of the Neurosurgery Department in the Ministry

of Health. The Department of Information Technology (IT) in the hospital gave the

author a copy of the list of 73 patients with a diagnosis of TBI after an RTC who

have been following up with their neurologist between 2015 to 2018. These patients

were also scheduled with follow up appointments throughout 2019 in the

neurosurgery OPD, where the data would be collected. The contact information

provided on the list comprised family members who were present at the time of the

RTC. The author thus recruited 17 eligible and consenting pairs of family caregivers

and their respective individuals with TBI from the provided list. This totaled the

sample size to 36 pairs of family caregivers and their individuals with TBI. For the

sake of the present study, the identical methodology employed by the Ageing and

Dementia Research Group (ADRG) for their study was executed in order to ensure

consistency of the research method and subsequent findings.

The author of this research is not a native speaker of Arabic, which is the

national language of Oman, and hence had to recruit a Research Assistant with a

background in Psychology. The author trained the Research Assistant in the process

of data collection, which involved the administration of assessments and qualitative

interview skills. After the completion of the training, the Research Assistant was

provided with a mobile phone to contact potential participants on the list provided by

IT, with the assistance of a script approved by the QUT Human Ethics Committee

(Appendix B). The Research Assistant described the nature of the research and its

aims and invited the family member and their individual with TBI to participate in

the study. Of the list of 73 patients, 17 consented to participate. The individuals who


Road Traffic Crash

provided their verbal consent on the telephone were given a date and time of

appointment with the research team in the Outpatient Department (OPD) of

Neurosurgery.

The day prior to the scheduled appointment, the Research Assistant contacted

the individual and/or his or her family member and re-confirmed the appointment.

On the date of the scheduled appointment, the individual with TBI arrived in the

OPD with his or her family member and was received by the research team. In the

private room allocated for the collection of data and interview, the Research

Assistant again provided verbal information regarding the study and provide the

participants with information sheets (Appendix C). The author collected data, with

the assistance of the Research Assistant. The individuals with TBI were asked to

respond to the tasks on the MoCA. If their score on the MoCA was below 26 out of a

possible 30, indicative of cognitive impairment, they were included in the study and

the HADS and FIMS instruments were administered. Family Caregivers were

simultaneously assessed on the ZBS. The results were evaluated using descriptive

analysis for the mean and standard deviation, and then the burden was further

analysed against the socio-demographic features of all the participants and

performance on the instruments using chi-squares and Spearman’s non-parametric

method.

3.2.2.4 Result of Study 1

Management of the Data and Statistical Analysis

Data were summarised using descriptive statistics, with Means and Standard

Deviations reported for continuous variables and Frequency and Percentages

reported for categorical variables. Since the sample size was less than 50 and

variables significantly deviated from normal (based on the Shapiro-Wilks test), the


Road Traffic Crash

65

non-parametric Spearman’s rank correlation coefficient was used to assess the

correlation between continuous outcome variables. Association between two

categorical variables were tested using Chi-square tests (Fisher's exact test was used

for a two by two cross-tabulation and Pearson chi-square or Likelihood ratio tests for

a non-two by two cross tabulation). A p-value of less than 0.05 was considered

statistically significant. All the analysis was performed using IBM SPSS (IBM Corp.

Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM

Corp.).

The original Likert scale for interpretation of scores on the ZBS is presented

in the Table 3.2 (Hébert et al., 2000). As the sample for the present study was less

than 50, the author of the study collapsed the scores into a revised scale with 2

categories, based on the original cut off scores (see Table 3.2). This technique of

collapsing categories has been used previously in other cultural studies, in order to

ensure an accurate presentation of the sample (Bachner & O’rourke, 2007;

Lukhmana, Bhasin, Chhabra, & Bhatia, 2015).


Road Traffic Crash

Table 3.2

Score Values and Interpretation on Zarit Burden Scale (Original and

Revised)

Original Scale* Revised Scale

Score Interpretation Score Interpretation

0-21 Mild or No Burden 0-40 Mild to Moderate

21-40 Mild to Moderate

41-60 Moderate to Severe >41 Severe

61-88 Severe

*(Hébert et al., 2000)

Descriptive Analysis

Table 3.3 shows the Means and Standard Deviations of participants in Group

1 and Group 2 on the measures. The average burden score of the family caregivers in

Group 1 experienced a mild to moderate level of burden as a result of caring for the

individual with TBI. The mean scores on the HADS indicated that on average, the

individuals with TBI in Group 2 were at risk of developing depression and anxiety. It

appeared that on average, the individuals with TBI were more physically and

cognitively independent, without requiring much assistance from the family

caregiver. Based on the descriptive analysis of the results interpreted with the revised

scale of the ZBS, 25% family caregivers experienced significant burden, while a

majority of 27 reported mild burden in caring for an individual with TBI (See Figure

3.1).


Road Traffic Crash

67

Table 3.3

Results of Participants in Group 1 and Group 2 on the Instruments

Variable Mean±SD

Group 1: Family Caregivers

Zarit Burden Scale score 30.58±15.08

Group 2: Individuals with TBI post RTC

Montreal Cognitive Assessment score 17.92±5.02

Hospital Anxiety and Depression Scale: Anxiety subscale 11.00±3.84

Hospital Anxiety and Depression Scale: Depression subscale 10.14±2.84

Functional Independent Measurement Scale: Motor scale 78.78±21.61

Functional Independent Measurement Scale: Cognitive scale 26.94±6.59

Functional Independent Measurement Scale: Total score 105.72±24.28

Figure 3.1. Level of Burden Experienced by Family Caregivers

Correlations


Road Traffic Crash

The correlation matrix depicts the strength of the relationship between the

cognitive impairment, depression, anxiety, level of physical and cognitive

functionality of the individuals with TBI and the burden of the family caregiver

(Please see Table 3.4). A p-value of less than 0.05 was considered statistically

significant. It was noted that these results may be limited by the size of the sample

and the use of assessments that have not been standardized to the present population.

It is likely that if this limitation is overcome, the findings may be varied from the

present results.

Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post Road Traffic Crash 69

Table 3.4

Correlation Matrix between Age of all Participants, Sequalae of TBI and Caregiver Burden

Group 1

Age

Group 2

Age ZBS MoCA HADS A HADS D FIMS

Group 1 Age - -.175 .280 -.227 .057 -.010 .090

Group 2 Age -.175 - -.056 .164 -.101 .091 .091

ZBS .280 -.056 - -.214 -.093 .135 .030

MoCA -.227 .164 -.214 - .066 .310 .191

HADS A .057 -.101 -.093 .066 - .015 .144

HADS D -.010 .091 .135 .310 .015 - -.019

FIMS .090 -.316 .030 .191 .144 -.019 -

Note: Group 1=Family Caregiver, Group 2= Individuals with TBI, ZBS= Zarit Burden Scale, HADS A= Hospital Anxiety and Depression-

Subscale Anxiety, HADS D= Hospital Anxiety and Depression-Subscale Depression, FIMS= Functional Independence Measurement Scale.

Correlations were two tailed (p>0.05)


Road Traffic Crash

71

In order to test second hypothesis of the study, i.e., the influence of socio-

demographic variables of the family caregiver on their own burden, the author ran

the data through Chi-square tests for categorical variables and non-parametric

measures for continuous variables, as shown in Table 3.5. According to the mean

age, the older caregivers experienced more burden because of care than their younger

counterparts. Additionally, most of the male and female family caregivers, who were

employed or unemployed experienced mild to moderate burden of care. Regardless

of who was identified as the ‘primary caregiver’, most of the family caregivers in this

study indicated mild to moderate burden. It generally appeared that the burden was

not influenced by any of the demographic features of the family caregivers.

Table 3.5

Socio-Demographic Features of Caregivers and the Level of Burden

Variable

Burden (Zarit Burden Scale)

0-40 (mild to

moderate) ≥41 (Severe)

n (%) n (%)

p

value

Age of caregiver,

mean±SD 37.67±12.78 41.56±14.97

0.454

Gender of caregiver

Male 17 (81.0) 4 (19.0)

0.443

Female 10 (66.7) 5 (33.3)

Relationship with

patient

0.432

Immediate family 15 (68.2) 7 (31.8)

Extended family 12 (85.7) 2 (14.3)

Occupational status

of caregiver

0.241


Road Traffic Crash

Variable Burden (Zarit Burden Scale)

p value 0-40 (mild to

moderate)

≥41 (Severe)

n (%) n (%)

Employed 13 (76.5) 4 (23.5)

Student 4 (100) 0 (0)

Unemployed 10 (66.7) 5 (33.3)

Education of

caregiver

0.688

Primary school 19 (76.0) 6 (24.0)

Completed 12 years

of school 6 (66.7) 3 (33.3)

University education 1 (100) 0 (0)

Informal education 1 (100) 0 (0)

Number of other

depends under the

caregiver's care

0.428

None 6 (85.7) 1 (14.3)

Upto 5 5 (62.5) 3 (37.5)

5-10 14 (82.4) 3 (17.6)

>10 2 (50.0) 2 (50.0)

Primary caregiver

0.867

Participant 14 (77.8) 4 (22.2)

Spouse 4 (66.7) 2 (33.3)

Shared roles in the

family and/or

community 9 (75.0) 3 (25.0)

Test: Likelihood Ratio, Fisher's exact test and Student's t-test


Road Traffic Crash

73

Using chi-square analysis, fisher’s exact test and t-tests the author compared

the socio-demographic features of the individuals with TBI and the burden

experienced by their caregivers, as seen in Table 3.6. Once again, these features did

not appear to have a significant effect on the level of burden experienced by the

family caregivers. Most of the caregivers of the individuals with TBI experienced

mild to moderate burden as a result of caring, with very few reporting a severe

burden of care based on the age, gender, education, occupational and marital status

of the individuals with TBI.

Table 3.6

Socio-Demographic Features of individual with TBI and Burden of Care

Variable

Burden (Zarit Burden Scale)

0-40 (mild

to

moderate)

≥41

(Severe)

n (%) n (%) p value

Gender of patient

Male 20 (71.4) 8 (28.6)

0.648

Female 7 (87.5) 1 (12.5)

Age of patient, mean±SD 26.22±11.34 24.89±3.92 0.734

Marital status of patient

Single 18 (75.0) 6 (25.0)

0.406

Married 5 (62.5) 3 (37.5)

Engaged 2 (100) 0 (0)

Divorced 2 (100) 0 (0)

Education of patient

Primary school 2 (40.0) 3 (60.0) 0.348


Road Traffic Crash

Variable Burden (Zarit Burden

Scale)

0-40 (mild

to

moderate)

≥41

(Severe)

p value

n (%) n (%)

Completed 12 years of school 17 (81.0) 4 (19.0)

University education 4 (80.0) 1 (20.0)

Informal education 4 (80.0) 1 (20.0)

Occupational status of patient

Employed 6 (60.0) 4 (40.0)

Student 12 (85.7) 2 (14.3) 0.359

Unemployed 9 (75.0) 3 (25.0)

Test: Likelihood Ratio, Fisher's exact test and Student's t-test

In the present sample, there appears some weak correlations between certain

variables and the burden of care experienced by the family caregivers. y. The

caregivers included in this study all had responsibilities towards an individual with

TBI and cognitive impairment, which was gauged by the MOCA. It was found that

family caregivers experience a higher burden owing to the lower cognitive

impairment and executive functioning of the individuals with TBI. Similar results

were interpreted from the performance on the HADS anxiety scale and the age of the

individual with TBI and the burden of the caregiver. With regard to the FIMS, it is

important to recall that a higher score implies less dependence on another individual

for activities of daily life. Thus, the negative correlation with the age of the

individual TBI is likely, as individuals with TBI of a more advanced age may have

more pressing demands physically and cognitively as well. However, it is important


Road Traffic Crash

75

to note that these trends need to be approached with caution as the none of the

correlations that were assessed in this part of the study appeared to be of statistical

significance.

Overall, none of the hypothesized variables explored appeared to have any

significant effects on the burden of the family caregiver in the quantitative analysis.

However, it is possible that these findings might be limited by the small sample size

and the utilization of measures that are not standardized to the Omani population.

Despite the limitation of the ZBS scale, Group 1 endorsed items to indicate their

burden. Burden of 25 % family caregivers was very high and it is of interest to

understand the experiences of these caregivers. Furthermore, it was not possible to

gauge cultural features that may impact the pattern of responses on sensitive

measures like the ZBS. Therefore, it was deemed necessary to explore the burden

through qualitative case studies interviews. The part 2 of the study 1 explored the

findings on the quantitative study using the case study approach.

3.3 PART 2: CASE STUDIES

3.3.1 Aim

Although the quantitative study did not yield any factors that could be

associated with the family caregiver burden, 25% of the family caregivers

experienced severe burden and 75% experienced mild burden as a result of caring for

an induvial with TBI post RTC. A case study approach was used to compare and

contrast the experiences of those who reported high or mild burden on ZBS. This

approach allowed the author to understand the challenges and coping methods of

family caregivers with the high and low scores on the ZBS. It was of interest to

explore factor associated with high and low burden.


Road Traffic Crash

3.3.2 Methods

3.3.2.1 Participants

Three family caregivers with low burden and three with severe burden were

invited to participate in a case-study interview. The details of these participants are

listed in Table 3.7.

Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post Road Traffic Crash 77

Table 3.7

Socio-Demographic and Zarit Burden Scale Scores of Case Study Participants

Family Caregivers with Mild/Moderate score on Zarit Burden Scale

Case

Number

Names of

Caregivers*

Relationship

with iTBI**

Age Number of

Dependents

Employment

Status

Financial

Status

Primary

caregiver

Score on

ZBS***

1 Abdullah Adult Son 24 0 Employed Comfortable Shared 13

2 Mohamed Sibling 33 5-10 Employed Comfortable Mohamed

and Mother

21

3 Ammar Sibling 37 >10 Employed Low Ammar 22

Family caregivers with Severe Score on Zarit Burden Scale

4 Ahmed Father 52 >10 Employed Low Wife 52

5 Mariam Wife 26 5-10 Unemployed Low Mariam 62

6 Samira Mother 36 Up to 5 Unemployed Low Samira 65

*Names have been changed **Individual with TBI *** Zarit Burden Scale


Road Traffic Crash

3.3.2.2 Materials

The semi-structured interview focused on understanding the caregiver

experiences of burden. It was of interest to understand their challenges and how they

coped with their difficulties. The probes used were:

1. Please tell us about your experiences while you were in the hospital after your

relative met with an RTC?

2. Please tell us about your experiences after having left the hospital?

3. Please tell us about your challenges and how do you try to cope?

3.3.2.3 Procedure

After the analysis of the quantitative measures used in Part 1 of the study, 3

family caregivers that experienced high burden and 3 that experienced low burden

were invited to participate in an interview. As the author is not a native speaker, a

local Research Assistant trained in Psychology was recruited to translate the

language and interact with the participants in the study. The interviews were audio

recorded and were then translated and back-translated and transcribed with the help

of the research assistant and a volunteer trained translator.

3.3.3 FINDINGS

The following case studies are caregivers whose scores on the Zarit Burden

Scale (ZBS) indicated low burden associated with caregiving.

3.3.3.1 Case-Study of Caregivers with Low Burden

Case 1. Abdullah

Abdullah’s father was diagnosed with a TBI in 2018. He is the youngest of 5

sons and lives at home with his parents. On hearing the news of the TBI diagnosis,


Road Traffic Crash

79

Abdullah recalls being shocked. The doctors in Oman described a poor prognosis and

informed him that if his father survives, he would likely remain in a vegetative state.

However, in spite of his initial shock, Abdullah did not upset himself over this

information. He had decided that he would seek treatment option for his father

abroad, “… I had already decided that we will take him abroad for treatment…I was

just waiting for him to be a bit more stable, and for the doctors to say he is fit for

travel, and then I was going to go…I had already made up my mind…”. Abdullah

expressed more trust in foreign medical treatment and was not satisfied with the

communication with the clinicians in Oman.

His father was subsequently discharged from the hospital abroad and prior to

his return, the doctors gave the family information about TBI and how to deal with

caregiving at home. As a result, the family was satisfied with minor improvements.

Abdullah was unable to identify a “primary caregiver” as tending to the needs of his

father was regarded as a communal activity. All the family members supported in

aiding with tasks of daily living for his father. In order to be available for his father,

Abdullah took respite from his college education. “I wanted to take care of my dad…

My brothers did a lot, and maybe they may not have needed my help, but …I wanted

to be there…”. The transition into the role of family caregiver was a challenging task

for the family members, however they adjusted to the process after a certain duration

of time. He said “In the beginning, there were few difficulties. But not a lot…it

wasn’t something we complained about…it was mainly about learning what to

do…but now we know, so it is easier.”

Abdullah described his faith in God and his love for his father to be the prime

motivators in his task of caregiving. “As Muslims, in the Holy Quran, there is a verse


Road Traffic Crash

in the Scripture which says that we should not humiliate or put a patient to shame. As

someone of sound mind and body, it is our duty to help and accept someone who

cannot help themselves because of their disability.” As the family had expected their

father to perish as a result of his injuries, they are relieved that he is still alive,

despite his disability post RTC. Abdullah said, “When I see my father still alive

among us, we thank Allah. Because earlier he was so close to death, and now he is

back with us.” Additionally, Abdullah described the emotional support provided by

their extended family and friends, who would visit their home to provide

companionship and comfort. He believed it was a son’s duty to care for his elderly or

sick parent, “If you are a good son or daughter, you will be able to look after your

family... I don’t require gratitude for taking care of my father. Its little compared to

what my father did for me. In the Quran it is written “be grateful to your parents.

Take care of them.”

Case 2: Mohammed

Mohamed described himself and his mother to be the primary caregivers to

his 17-year-old brother who was diagnosed with TBI in 2016. One of Mohamed’s

siblings passed away as a result of his injuries in the RTC, while the other survived

and now lives at home with his parents.

Mohamed recalled the time in the hospital with despair and grief, describing

himself as “Depressed”. The clinicians were sympathetic to the family who were in

grief over the demise of a family member. Therefore, Mohamed recalled that they

received timely updates and information from the hospital about the TBI, treatment

and recovery of their brother.


Road Traffic Crash

81

The transition to home from the hospital was challenging as the Mohamed

was not informed about the long-term effect of TBI. The sibling with TBI

experienced symptoms that Mohamed likened to “laziness or lethargy”. Mohamed

expected his brother with TBI to take more initiative in fulfilling his role to the

family, “I explained to my brother he was the man of the house and he should do his

bit now to help our father.” As a result of the grief of losing a member of the family

and the TBI of his brother, Mohamed lives in close proximity to his family and visits

the parents’ home often to help his father on the farm, in addition to his own

employment. He described his new role saying “I never want my parents to feel the

emptiness left by my deceased brother in the house, and I don’t want them to ponder

and worry about (individual with TBI) ... my (deceased) brother is the one who used

to accompany my father and help with transportation. Once he died, I have had to fill

in his shoes…I have had to do more help…I need to be free and available for my

family’s needs…” He admitted that as a result of caring for his brother and parents, is

unable to balance time for his wife and children. In a bid to support him, his father

and brothers share the responsibility to enable him to spend time with his children.

However, Mohamed finds himself always preoccupied with thoughts about his

parents and brother, “Even if I go out with my family, I will constantly be thinking of

my parents…I will be worried about them all the time…. I am always thinking about

them no matter what I do.”

Mohamed described his religious beliefs to be his primary source of strength

and describes his concern for his family as his duty. He also believes that as a result

of his actions today, his children will look after him in his old age, “If I look after my

parents today, my children will watch me and learn… they see that I help their


Road Traffic Crash

grandparents… They can look after me in my old age …because they see the duty of

children.”

Case 3: Ammar

Ammar and his family were expecting the arrival of their brothers from

Muscat on the morning of 30 August 2008. However, as the hours passed and the

brothers did not arrive, the family contacted the Royal Oman Police (ROP), who

subsequently informed them of a RTC that had taken place. One of the occupants of

the vehicles was taken to the hospital. On enquiring details of the vehicle, it became

apparent that the car was driven by Ammar’s brothers. After a whole day of

searching for his 30-year-old brother, the family came to learn of an unidentified

man who was operated on in the tertiary hospital in Oman. After multiple attempts to

identify the man, Ammar recognised him as his brother. He remained in coma in the

ICU for 5 months, and his family was not allowed to interact with him directly in

order to avoid infections. On waking up, the individual with TBI was unable to recall

memories or his family and the doctors informed the distressed members of the

family of the nature of the TBI and what to expect in terms of recovery and further

treatment and care. However, Ammar did not concern himself by communicating

with the doctors and nurses at all. He preferred to stay with his brother to provide

practical support, till the time came for his discharge. In order to prepare himself for

the care to be provided at home, Ammar would learn from the nurses who would

tend to his brother, by volunteering to help.

Therefore, on returning home from the hospital, Ammar volunteered to act as

the primary caregiver to his brother, ‘All my siblings are busy or they live far away

from home…I am the one that works close to home…Also, it is not easy for a woman

to take care of a man. So, I could not expect mother to do it…my father couldn’t do


Road Traffic Crash

83

it. Practically, I was the only one who was able to take up this role.’ The family had

modified the larger living room called the “majlis” into a larger room for Ammar and

the individual with TBI to stay and focus on recovery without disturbance. Ammar

remembered, ‘The first two weeks were the hardest, both physically and

psychologically… because I could not do anything away from him… I couldn’t see

my friends, and he constantly needed my help… But after 2 weeks I began to learn

and settled in…my friends decided that if I could not go to them, they would come to

me, so I was not alone…”. However, the members in the family would visit the

brothers every day and Ammar modified his social life to include his brother, ‘My

friends decided to come over to us, if I could not go to them. This was helpful as I

was able to look after my brother, and we were not alone.’

He feels sympathetic towards his brother for his injury and his behavior after

the TBI. But does not exhibit any frustration or anger towards his brother “Now if he

shouts or anything, I know so many painful things have happened to him, and I know

his injury did this to him. I know he does not really want to be the way he is… he has

never been like this his whole life… I don’t think one bad thing about him in my

mind.” He attributes his strength for caring for his brother from Allah and believes

that his purpose in life was to care for people in need, ‘From an early age, I cared

more for other people. Now I am older, and I take on the responsibility of

everyone…I look after everybody in the family…they all know that they can rely on

me… Looking after Dawood has given me strength, I never knew I could have.”

3.3.3.2 Case-Study of Caregivers with High Burden

The following participants in the study were selected based on their

performance on the Zarit Burden Scale, as they scored some of the highest scores.


Road Traffic Crash

These scores were indicative of very high burden associated with caregiving for a

family member with TBI after being involved in a RTC. Their burden was further

explored and elucidated below.

Case 4: Ahmed

Ahmed’s son met with an RTC and was diagnosed with TBI in 2016. Ahmed

was the sole provider for his family of 10, including his wife and children. He said

that their lives changed after the day their son was involved in the crash in Oman.

Ahmed recalled the clinical care for his son as traumatic as all the

intervention led to further deterioration. He perceived that the doctors and staff in the

regional hospital were not caring for his son, “I am 100 per cent certain that (The

doctors) wanted him to die. They did not want this story of misconduct to become a

legal crisis, which I would have definitely won. It would have been a big issue for the

hospital and the doctors.” As Ahmed felt that the quality of communication between

the clinicians and the family was insufficient. Eventually, he and his wife resigned to

accept that their son might perish as a result of the injuries from the RTC. Ahmed

recalled attempting to bring the matter up to higher authorities in Oman, but was met

with resistance, and claims that the hospital records for his son are not saved

accurately. This ultimately posed as an issue when he decided to transfer his son to

India for further treatment. He recalled, “The hospital sent a letter to the surgeons

abroad without putting in any accurate information about his history, and only

recommending physiotherapy. When I started making preparation to travel, one of

the doctors tried to convince me to not go to India and to continue care in Muscat.

They knew they made a mistake, so they did not know what to do now and they did

not want me to leave either. For three months, no one cared, no one checked.”

Ahmed felt unsupported by the staff in Oman and was relieved with the treatment


Road Traffic Crash

85

abroad, where his son subsequently improved. At the time of discharge Ahmed was

provided with resources and information about TBI and the family were

accompanied by a nurse from the hospital to assist them at home, who stayed with

them for one month.

Once the nurse had returned to the hospital, Ahmed and his wife took the

responsibility helping their son with his activities of daily living. Eventually, they

were confined to their home in order to be with him “If we are invited for any family

gathering, we cannot go. Transport is difficult. My son is not a baby. So, carrying

him and moving around is not easy. Our entire family has to change their life for

him…”. Ahmed also struggles to find time for his own personal needs, ‘I have no

time for myself. Something always comes up, taking him to the toilet, or I need to

clean something, or change his clothes….and then the day ends like that.’ The family

also experienced financial strain resulting from expensive treatment options. The

decline in the number of charities to assist families with a relative with disabilities

has also exaggerated this crisis in Ahmed’s family. In order to be able to pay for his

son’s treatment abroad, Ahmed had had to sell his business, which was their main

source of income. Their financial struggle has limited their access to other forms of

treatment that they would like to attempt such as stem cell treatment and herbal

remedies. Of the future of the individual with TBI Ahmed says “if something

happens to me, who will take care of him…I don’t know. I am the only one who does

all this…later, I don’t know…maybe the family will throw him to the hospital and

leave him as their responsibility.”

However, Ahmed finds relief from his relationship with members in the

community who often visit their home. “Our house is always busy. They all bring


Road Traffic Crash

their coffee and snacks and we all sit together and talk. We never feel alone. They

make sure that we are always happy and laughing.”

Case 5: Mariam

In 2016, Mariam’s 33 years old husband of 6 years met with an RTC on his

way back to the city of Muscat where he works as a police officer. Mariam was

pregnant at the time and had 2 children. She is currently actively seeking

employment and is the primary caregiver to her husband since the diagnosis of TBI.

Although the clinicians caring for her husband advised her to return home,

she insisted to remain with her husband in the hospital. Her husband’s family

expected her to make the sole medical decisions pertaining to her husband, ‘(His)

family decided I should do everything…even while I was pregnant….so I had to run

around with the doctors…(His family) told me you, as the wife, you should do

everything…the family put all the responsibilities on me…no one fed him, or cared

him…from 6.00 AM to 9.00 PM, every day I was in the hospital with him….” As she

was the primary caregiver and sole bystander to the patient, Mariam interacted

regularly with the doctors, who provided her with information about TBI and

feedback regarding his diagnosis and treatment.

After his discharge from the hospital, her husband was sent back to his family

home. Although she observed changes in his behavior, she was prepared for them as

the doctors had told her that he would be like her “fourth baby”. However, her

husband’s family who had not received any information struggled with his new

behavior. “His family would lock him and I together in his room and sometimes they

would tie him up… they were worried that people would start talking…. they were

scared that people would say that it was Hasad (Evil Eye or Jealousy) …” She


Road Traffic Crash

87

eventually decided to leave for her parents’ home with her children and her husband,

which is where he spent the remainder of his time recovering. “It was like nothing

happened to him. He was laughing and talking and told stories, he started driving

and would go out alone. He started to get better… I never treated him like a child the

way his family did”. However, with time, their marriage strained as result of his

impulsive behaviors. He indulged in extra-marital relationships and reckless

behaviors, “His behavior with women has gotten worse. he doesn’t care that I saw

his messages to other women on his phone… he drives too fast…he gets caught on

speed cameras… he does whatever he wants…”. Additionally, Mariam has had to

take up responsibilities that generally are stereotypically male roles in Oman, such as

organizing the finances for the household and trying to find a job to support the

family. She said “I have to remind him about bills, groceries, go to the bank …I

suggested we take a loan for a new car…and the car is in my name…because he is

irresponsible with money…now the household finance is all my responsibility …his

responsibility towards me and his family is nothing.”

As a result of the stress arising in caring for him and her children and the

pressure of their household obligations, Mariam was diagnosed with gastro-intestinal

dysfunctions and the doctors have recommended that she take respite. But as she has

all these responsibilities, she is unable to heed their advice and care for her physical

health. This has further aggravated her feelings towards their marriage, “I do not

consider him like a husband…I do not like to sit with him… right now, the only thing

keeping me with him, are my children.” Her faith in Allah and their children are the

motivation for her to remain with her husband and to continue caring for him. She

does not wish for her family to speak ill of her, as they expect her to conduct the

traditional wifely duties in the Omani community. Failure to adhere to these social


Road Traffic Crash

female-sanctioned expectations is frowned upon and Mariam does not wish to go

against the cultural expectations as it casts negatively over her children and her

family.

Case 6: Samira

Two of Samira’s sons were involved in an RTC and were diagnosed with TBI

in 2015. The older son was diagnosed with mild TBI and rehabilitated to his

functions in his family and society. But the younger son who is 21-years-old, had a

severe TBI, which left him physically impaired and cognitively disturbed.

The paramedics in the ambulance informed Samira that since one of her son’s

was very critical, it was likely that he might die before they reached the hospital in

Rustaq. On reaching the hospital, she recalled ‘They gave me no hope…they did not

even open a file for him in (the regional hospital), as it seemed pointless as they were

positive, he would die.’ Eventually, Samira recalled she made the decision to seek

treatment abroad, ‘One of the nurses told me, “...if you are considering taking your

son abroad, please do it now, otherwise he will surely get worse, and (the doctors)

will keep him for ‘Do Not Resuscitate’.” Samira who had previously insisted on her

trust in the medical system in Oman, experienced a great deal of guilt and depression

as she felt responsible for his son’s predicament. The family gathered their money

with the support of the extended family and took their son abroad for further

treatment. She said that ‘…after 2 weeks, he opened his eyes, and started to eat and

drink…he could not talk…but he moved his lips.’ The doctors in India explained to

Samira and her husband the nature of his injury and how to care for him prior to their

return to Oman. Samira informed that the surgeons continue to stay in touch with the

family.


Road Traffic Crash

89

The family prepared themselves for the return home and commence home-

based caregiving after having purchased various items from abroad for their son.

“After all that time, my son and I were still suffering... He was struggling because of

his condition, I was struggling because I was still learning how to do things him…lot

of trial, but no room for error...” On their return to Oman, the family frequently had

to consult with doctors in the country in order to evaluate the condition of their son.

However, the mixed opinions of the doctors in Oman led to despair, and thus, they

repeatedly flew to India for further treatment. They were eventually referred to a

doctor in Oman who was recommended by her son’s treating physician in India and

this has reduced the amount of travel for medical treatment.

Samira wept during the interview as she said, ‘My life has changed

completely….my whole life is about my son…everything in my life changed and it is

more difficult. I cannot go anywhere, I cannot leave him alone…My family house is

not far, so every two months, I go for one hour to visit my mother and sisters and I

come back.” As the primary caregiver, Samira is responsible to tend to the other

children and for the individual with TBI as well. Thus, she finds that she neglects her

own needs and owing to the nature of care her son requires, his father and siblings

are unable to help her as well.

She termed the night as her “second shift”, as she cannot sleep because “..in

India the doctor explained to me, if he sleeps in a particular position, his tongue can

clog him, and he can suffocate…so I need to be alert at all times...” In the daytime,

she is expected to carry out all her responsibilities as she has no assistance. She feels

frustrated with the Medical system in Oman owing to her previous experiences. She

hopes that this will change. She believes that “only a mother can look after her baby


Road Traffic Crash

the way I am doing for my son…He is my baby.”. She feels encouraged by the

support of her family and her faith in Allah, and in the belief that this situation was

planned or pre-destined for her. “This is the will of Allah…He has prepared me my

whole life for this…”

3.4 DISCUSSION

This study aimed to examine the burden associated with caregiving for

individuals with TBI after an RTC in Oman. Using the mixed methodology of

surveys (Part 1) and case study interviews (Part 2), the author has been able to

identify features that impact the burden of the family caregivers in this region. The

study found that on this sample, the quantitative method appeared to limit the extent

of the findings. No significant relationship emerged between variables of the family

caregivers or their individuals with TBI after an RTC in Part 1 of the study.

However, 25% of the family caregivers had severe burden on the ZBS and the

remaining experienced moderate to low burden, based on the revised interpretative

scale of the ZBS (Refer to Table 3.2). Thus, it had become of interest to contrast and

compare the experiences of the family caregivers in this study and what was

contributing to their burden in the region. The outcome indicated that all the

caregivers had experienced significant challenges and were taking care of severely

impaired individuals with TBI. The differences emerged in their coping style and in

the level of their psychosocial and cultural support. These differences were

ultimately responsible for the level of burden associated with caring for their

individual with TBI.

The results of the quantitative part of the study offered very little insight into

the burden experience of the family caregiver in Oman. Certain variables such as the

age of the individual with TBI in this study appeared to have some influence on the


Road Traffic Crash

91

burden of the caregiver. This might be owing to the previously researched

possibility that younger individuals diagnosed with TBI have the potential to have a

normal life expectancy, but with varying needs and demands on their caregiver at

various stages of life (Harding et al., 2015; Strauss, Shavelle, & Anderson, 1998;

Wongvatunyu & Porter, 2005). In the present quantitative study, the results did not

reveal any significant links between the characteristics of the sequelae of TBI and the

burden of the caregivers. However, this result needs to be absorbed with caution. It is

likely that the limited size of the sample may have impacted the findings of this

study. Additionally, it is socially disapproved in this region to complain about the

strain of caring for an ailing member in society, particularly a family member in

need. Therefore, it is possible that the responses on the ZBS may been subjected to

social desirability.

The instruments used in this study were not designed for an Arab population

and may have been culture bound, without being standardized. For example, while

the HADS was found to be a reliable tool to screen the level of mood disturbances

among patients with epilepsy in Oman (Abdullah Al-Asmi et al., 2012), it was found

to be unreliable in screening for anxiety or depression among clinical patients with

TBI (Al-Adawi et al., 2007). This may have been owing to the discouragement of

self-expression in a collectivistic society or owing to misunderstandings in the

translation (Al-Adawi et al., 2007). Additionally, this may be attributed to the denial

of these symptoms owing to the stigma attached to behavioral disturbances after a

brain injury in this region (Abdullah Al-Asmi et al., 2012). Thus it is understandable

that the use of quantitative methods alone for studies on caregiver burden and

experiences have been frowned upon as it negates the contextual, cultural and

environmental factors that cannot be gauged through surveys (Hayre & Muller,


Road Traffic Crash

2019). Therefore, based on the performance on the ZBS, family caregivers with the

highest and lowest scores on burden were selected for the case-study method.

Through a qualitative approach using the case study interview method, it was

apparent that these family caregivers experienced various stressors in their

environment that contributed to their perception of the phenomenon of caregiving.

All the family caregivers appeared to be caring for an individual in their family who

was rendered with a severe impairment after a TBI. But the family caregivers with

lower burden appeared to have in place more efficient coping techniques despite the

challenges that they faced. Family caregivers with higher burden had to deal with

multiple challenges but were unable to source coping techniques that suited their

experience or the context in which caregiving was taking place. It was apparent that

all the care recipients with TBI had varied levels of need post RTC. Therefore, the

family caregivers also experienced varied levels of responsibilities towards the

individual’s activities of daily living (feeding, bathing, moving from one place to

another) and/or instrumental activities of daily living (employment, maintaining

finances, care for other dependents).

While all the family caregivers in this study had to adjust to the role of

“caregiver” to the individual with TBI, the families with higher burden appeared to

experience various challenges without implementing any suitable coping methods.

Interestingly enough, the family caregivers grieved over the impairments after the

TBI, but the source of the burden was not as a result of the TBI sequalae. Through

the interviews it was evident that the challenges faced by the family caregivers were

heavily influenced by their social context, personal characteristics and the culture in

Oman (See Figure 3.2). Social features included the access and quality of

communication with clinicians, financial means and availability of social support.


Road Traffic Crash

93

Personal characteristics included age, self-care, time management, belief systems,

feelings of unconditional love and the attitude towards undertaking additional

responsibilities after the diagnosis of TBI. Cultural influences on the experience of

burden are religious ideologies, gender roles and filial obligation and duty. It is

important to point out the significance of the rich culture in Oman, as it impacts the

personal characteristics and the social context as well. The following sections will

compare and contrast the challenges and the employed coping methods of the family

caregivers that contributed to their burden.

Figure 3.2. Characteristics in Omani Society that Impact Family Caregiver Burden

3.4.1 Social Context that Impacts Caregiver Burden

All the caregivers in the case studies, regardless of their level of burden, were

able to recall their initial experiences in the hospital as distressful and traumatic

(Warren et al., 2016). They experienced shock and were worried over the welfare of

their individual with TBI and were preoccupied with fears of impending death as a

result of the injuries from the RTC. This anxiety experienced by family caregivers in

Oman is consistent with findings from previous research on families whose relative

was in critical condition in hospital (Bell, Araki, & Neumann, 2001; Chou,

LaMontagne, & Hepworth, 1999; Pearlin et al., 1990). During this time, the family


Road Traffic Crash

caregivers relied heavily on their interaction with the clinical staff in order to gain an

understanding of the situation.

In the present case studies, it was evident that the family caregivers that had

reasonable expectations from the healthcare services in Oman and were satisfied with

the quality of the clinical communication experienced less caregiver burden (Cases

2,3). If they experienced any dissatisfaction with the medial system, they would

formulate other solutions (e.g., travelling abroad for treatment [Case 1]). This

empowered them to feel prepared to adopt the role of the family caregiver and

medical decision maker. In contrast, the family caregivers who perceived the medical

treatment in Oman as inadequate and recalled the experience at the hospital as

traumatic subsequently experienced severe burden as a result of caregiving. They

described strained relationships with the staff in the hospital, marked with a

perceived lack of frequent communication, neglectful treatment, insensitivity to the

family and the individual with TBI and a despairing prognosis with no further

treatment options. This skewed view of the clinical care coincides with findings from

previous studies that has indicated that at a time of crisis, one of the challenges faced

by the family caregivers is the dissatisfaction with the quality of medical care and the

attention (Fleming et al., 2006). In this study, it was found that if the family

caregivers had the financial means to overcome these challenges, they experienced

less burden while their individual with TBI was hospitalized.

While the family caregivers with low burden (Cases 1, 2) were financially

more secure and were thus able to consider and afford multiple treatment options,

family caregivers with high burden (Cases 4, 5 and 6) faced financial hardships. This

is not unlike previous studies on family caregivers with high indices of burden. As a

result of the TBI of their family members, these families struggled to secure money


Road Traffic Crash

95

for further treatment options and were forced to seek employment or take loans or

sell their source of livelihood. In some cases, the members of the extended family

and community would attempt to relieve the family caregivers of this burden by

providing donations.

Family caregivers (Cases 1, 2, 3) who received support for caring for the

individual with TBI from their extended family and members in the community were

found to have less burden. Social support in the form of intervention or support

groups in the society are a source of relief for family caregivers (Hudson et al., 2012;

Jeffrey S. Kreutzer et al., 2015). While such formal support facilities are not yet

established for these families in Oman, it appeared that the support provided by the

extended family and members in the community were a suitable compromise for the

individuals with TBI and their family caregivers with low burden. However, in

contrast the inadequate rehabilitation facilities in Oman posed as a serious challenge

to the caregivers with high burden as they were often the sole caregiver to the

individual with TBI.

3.4.2 Personal Features that Impact Caregiver Burden

All the caregivers found that the initial adjustment to the responsibility of

caregiving was a stressful ordeal. They had to adjust to the changes in the individual

and cope with the extent that the individual relied on them for their personal needs.

With time, it was found that the family caregivers were able to adjust themselves to

the new role of caregiving. But there emerged differences in the level of adjustment

among the caregivers with high burden and low burden. Cases 4, 5 and 6 (high

burden) continued to experience strain from the lack of personal time and sleep,

additional work load with limited support, decline in personal health, marital crisis,

financial strain, and overall changes in behavior and the functionality of the


Road Traffic Crash

individual with TBI. This was further compounded with a general mistrust in

facilities in the Omani society, as a result of their previous experiences in the

hospital. They expressed anxiety regarding the future of the individual with TBI and

felt solely responsible for their welfare. These findings are similar to previous studies

on family caregivers who experience burden from the responsibilities and demands

of the process of caring (Caplan, Bogner, Brenner, Arciniegas, et al., 2016; Caplan et

al., 2015; Degeneffe, 2019). On the other hand, it was found that in order to adjust

with the responsibilities of being the “family caregiver”, cases 1, 2 and 3 (low

burden) held strong belief systems about caring for unwell family members.

(Bordonada, Feather, Ohrt, & Waddington, 2018). These were closely linked to their

religious beliefs in that caregiving was pre-destined and was a duty ordained by God.

Almost all the family caregivers expressed “unconditional love” as a source of

motivation to continue imparting care, in spite of their difficulties (Elbaum, 2019).

Previous studies on Muslim caregivers have found a similar trend wherein caregiving

for an ailing or elderly family member is a noble act (Ahaddour, Van den Branden, &

Broeckaert, 2018; Osuna, 2017; Rolland, 2019).

As mentioned earlier, the age of the individual with the injury can impact the

burden of caregiving. Similarly, the age of the family caregiver too can affect the

perception of the process of caregiving (Pharr et al., 2014; Shifren, 2001; Shifren &

Kachorek, 2003). The quantitative study in part 1 indicated a tentative possible link

between age and the experience of burden. This seems to be supported by the present

study as the younger family caregivers reported experiencing less burden in contrast

to their older counterparts with high burden. This might be owing to the possibility

that younger family caregivers face challenges that are markedly distinct from older


Road Traffic Crash

97

family caregivers and are thus at less risk of developing secondary depression (Pharr

et al., 2014; Shifren, 2001; Shifren & Kachorek, 2003).

3.4.3 Cultural Features that Impact Caregiver Burden

The cultural elements of collectivism and the teachings of the Holy Quran

seemed to dominate over all the elements in the lifestyle of the family caregivers in

Oman. The role of culture in Oman seemed to provide the most comprehensive

source of coping and motivation for the families. However there seemed to be

culturally sanctioned gender roles that may act as a double-edged sword in the

expectation of who performs the role of caregiving and the expected sacrifices they

would have to make.

Traditionally caregiving is cast as the role of the female (Revenson et al.,

2016). But literature has observed variations based on cultural and hospital

regulations, in which males also succumb to the burden associated with caregiving

for an individual with a chronic illness (Kanmani, Thimmappur, Birudu, Reddy, &

Raj, 2019). In the present case studies, while the males (cases 1, 2 and 3) largely

experienced less burden, they also shared in the role of caregiving, adopting in some

cases, the role of the ‘primary caregiver’. However, the 2 female case studies (high

burden) found that there was an expectation forced on them by their family and

community to be the sole caregiver, while the males optionally took up this role.

Thus these female caregivers appeared to be prone to anxiety, depression, physical

health concerns and insomnia as a result of caring (Revenson et al., 2016).

Additionally, all the family caregivers in the study observed that their social

behaviors had to be adapted to the needs of the individual with TBI, but the female

caregivers particularly suffered from a poor quality of social life. Comfort and


Road Traffic Crash

companionship were sought through their faith in the teachings of Islam in an

attempt to adapt to this sudden and possibly permanent change in lifestyle.

Teachings in the Holy Quran which were applicable to the care of ailing and

the elderly were sourced as motivation and appeared to be a coping mechanism

(Ahaddour et al., 2018). Coupled with their religious faith, all the caregivers had a

sense of filial obligation and duty which contributed to the quality and extent of care

that was provided to the individual with TBI (Downing & Ponsford, 2016). Their

filial motivation to care was considered as an expression of unconditional love

accompanied by patience and understanding (Adams & Dahdah, 2016; Mbakile-

Mahlanza, Manderson, & Ponsford, 2015; Pan et al., 2017). In fact, the belief that the

RTC was pre-destined and that caregiving was part of their destiny and thus their

duty, enabled the family caregiving with accepting the incident and adapting to the

responsibility of caregiver (Koenig, Nelson, Shaw, Saxena, & Cohen, 2016). These

teachings also extended to the members of the larger family and the community who

would come together to offer support.

Literature has indicated that caregivers that receive emotional support from

their family and community tend to experience less burden than their counterparts

with no support (Ergh, Hanks, Rapport, & Coleman, 2003; Ergh, Rapport, Coleman,

& Hanks, 2002; Sabella & Suchan, 2019; Shiba, Kondo, & Kondo, 2016). In Oman.

there is a mindset that an illness is a shared burden for all the members in the sick

individual’s community (Rolland, 2019). In the inter-dependent and collectivistic

culture of Oman, the community bears witness to the sufferings of a sick individual

and visits homes and offers emotional, social and financial support (Al-Saadoon &

Al-Adawi, 2019; A. A. Al Balushi, 2019). Thus, all the family caregivers in this case

study found that the role of the integrated community system alleviated their family


Road Traffic Crash

99

burden and thus did not experience feelings of isolation, which is a significant

contrast to other studies on family caregivers.

All these findings have brought to light various aspects in the Omani society

that seem to have an influence on the experience of burden in caregiving. There are

numerous challenges faced by these families in Oman. However, it appears that

caregivers that do not perceive the burden as ‘severe’ are more resilient, financially

secure, receive social support, adopt positive religious and cultural beliefs.. The case

studies offered an insight into the challenges that contribute to the burden and the

suitable coping mechanisms that can be employed in order to alleviate the strain. It is

clear, therefore, that the qualitative approach offers a deeper insight into caregiving

in the country of Oman, rather than the sole use of the quantitative method.

3.5 IMPLICATION

This study has managed to gather information about family caregiving burden

among the under-studied population of Oman. It is evident that the quantitative

methodology alone does not offer justice to the experiences of the family caregivers

in this region. This allowed for the employment of the qualitative method which

permits the research to have a preliminary insight into the burden of these family

caregivers and bears the foundation for larger qualitative research. The findings in

this study have highlighted several challenges that have to be coped with by the

members of families with an individual with TBI in Oman. By developing more

resources through social media or telephone helplines in the community these

families would be able to better manage the care of their family member with TBI.

Additionally, the role of allied health services such as social workers or

100 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury

post Road Traffic Crash

psychologists can be amplified, particularly in the stage of transition from the

hospital to the home.

3.6 LIMITATIONS

Despite its merits, the study is not without its limitations. However, the

resolution of these limitations paves the way for future studies. Although it appears

that the quantitative method might not be adequate for this sample, it is likely that

had the sample been of a larger size, the findings might have varied substantially.

Additionally, the instruments used in the study need to be standardized for this

population, and that might subsequently impact the results. While the case-study

method offers a snapshot into the burden and experiences of the family caregivers,

the findings cannot be scientifically generalized (Zainal, 2007). There are interesting

trends that seem to emerge, such as the role of gender, religion and culture that

indicated that a larger qualitative study further exploring and delving into the

caregiver experience in Oman is necessary.

3.7 CONCLUSION

The present study was conducted as the first study of its kind on this

population in Oman. It has shed light on the burden faced by the family caregivers of

individuals with TBI in Oman after an RTC and is a preliminary foundation for

future research. It has paved the way for further qualitative studies. This would

clearly identify and understand the characteristics that impact caregiver burden in the

Sultanate of Oman. Furthermore, the results have demonstrated a need for the input

of more allied health services, such as psychologists and social workers in the

community particularly at the time of discharge from the hospital. It is of interest to

evaluate and explore the family caregiver experience from its onset, in order to

derive a clear image of the challenges and coping methods used in this region,


Road Traffic Crash

101

particularly with an understanding of their cultural belief systems and accepted role

behaviors. Therefore, a larger qualitative study was conducted on the caregivers in

Oman and is documented in Study II.

Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of

Individuals with TBI in Oman

103

Chapter 4: Study 2- Understanding

Caregiving: A Qualitative Study

on the Experiences of Caregivers

of Individuals with TBI in Oman

In the Study 1 of this research, the author explored and examined the nature of the

burden experienced by family caregivers of individuals with TBI in the Arab country

of Oman. Although the quantitative methodology was limited, it showed that 25%

were highly burdened and the remaining 75% experienced mild to moderate burden

of care. Further, exploration of the 6 cases that had high or low burden indicated the

common experiences as well as the challenges and coping styles. Those who reported

mild burden reported having social support and culturally sanctioned beliefs on

caring for an ailing family member. On the contrary, the family caregivers with

severe burden felt unsupported and under tremendous social and cultural pressure.

Everyone relied heavily on their Islamic principles and religion to cope. Study 1

highlighted the need to study this phenomenon in more depth using qualitative

methodology to unpack the experiences, changes and coping strategies of the family

caregivers in Oman.

4.1 INTRODUCTION

The World Health Organization (WHO) has predicted that RTC are going to

be the leading cause for a high death toll and rate of injury among the youth by the

year 2030 (Chelly et al., 2011). Brain injuries are one of the leading consequences of

RTC globally and is particularly notorious for lasting physical and cognitive

disability, socio-economic strain, hospitalization and a high mortality rate. The

104 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of


challenging behaviors after a brain injury can include sexual promiscuity, lack of

motivation, poor impulse control, aggressive behaviors and mood changes (Tam et

al., 2015). As often there is a scarcity of suitable rehabilitation facilities, the family

members are often relied upon for caring and providing support to these

disadvantaged members of society after discharge from the in-patient care in the

hospital (Claire Jourdan et al., 2013; Plank, Mazzoni, & Cavada, 2012).

Studies in the past have found that the discharge from the hospital equates

with the onset of the role of family caregiver in the home, which also marks the

beginning of the decline of their psycho-social well-being (B. J. Turner, Fleming,

Ownsworth, & Cornwell, 2008). The availability of support from rehabilitation and

support groups in the community affects the amount of time that the family

caregivers require to adjust to the process of caregiving (J. Ponsford et al., 2003;

Tam et al., 2015). It has been suggested that family caregivers feel better equipped to

cope and adjust with the changes and responsibilities associated with TBI, if at the

time of discharge from the hospital, they are kept informed about the plan of further

treatment, provided with information about basic safety methods and if all their other

concerns regarding the diagnosis and care are addressed (Hanson et al., 2019; Powell

et al., 2017). However often this is not the case, and families have to bear with the

changes in their individual with TBI as caring progresses. Studies have indicated that

behaviour within the phenomenon of caring varies based on contextual and cultural

features.

The comprehension and perception of damage after a TBI can be impacted by

social and the cultural features that the family caregivers identify with. This

understanding of their experience impacts the adopted coping methods that might

significantly vary across individuals within various cultures and ethnicities (Knight



105

& Sayegh, 2010). Among Arab families for instance, religious interpretation and

familial advice and opinions are generally the source from which individuals within

the community seek rational explanation for the presentation of symptoms and the

overall treatment plan (Padela, Gunter, & Killawi, 2011). Psychiatric symptoms are

often misunderstood or linked with supernatural explanations (F. Islam & Campbell,

2014; Mbakile-Mahlanza et al., 2017) and are marked with stigma (Hamid &

Furnham, 2013) . This impairs many families from seeking assistance for the

psychological or emotional disturbances that occur after a TBI. A qualitative study in

2012 from the Sultanate of Oman suggested that owing to the collectivistic culture

prevalent in the region, family and members of the community bear witness and

share the responsibility towards the individual with TBI, and their welfare tends to

impact the larger group that they are a part of. Additionally, owing to the significant

role of the family in the Arab Islamic community, their opinion regarding healthcare

and their influence on the way care is given or received is substantial. In fact, many

individuals that require medical attention choose to value the opinion of their

families over the opinion of the clinicians. Family caregivers in turn regard their role

to the ailing relative as a duty and caregiving is a communal affair. It has thus been

suggested that resources and education for caregiving need to be custom-made for

the Arab population, where religion and cultural values play a predominant role

(Kamel, 2016; Petkari, 2015) . However, caregiver studies are available are more

predominantly from Western populations or non-Arab ethnic groups. There is a

significant dearth in literature arising from the Arab regions with regard to caregivers

of TBI after an RTC, and Oman is not an exception.

Study 1, which utilized a quantitative method yielded results that did not

imply the presence of any significant relationship between the burden experienced by



the family caregivers in Oman and their contextual features. But it was able to

identify that more than 20% of the family caregivers experienced sever burden from

caring for an individual with TBI, while the remaining experienced lower or

moderate burden. Thus the case-studies selected for analysis based on their high or

low to moderate burden revealed themes in the burden of care. Family caregivers in

Oman seemed to experience a considerable number of challenges and sourced their

own personal and cultural belief systems in order to be able to cope. Additionally,

the role of the social support and religious beliefs were of high significance in the

maintenance of their burden of caring. Thus, the qualitative method is to be

employed in this Study 2 in order to gain an in-depth understanding of the

phenomenon of living with the responsibility of caregiving for an individual with

TBI post RTC in Oman.

4.2 AIM

This study aims to understand the lived experience of family caregiving in

Oman for those who are caring for individuals with TBI after having survived an

RTC.

4.3 METHOD

4.3.1 Participants

Fourteen caregivers participated in the face-to-face semi-structured interview. The

participants comprised of eight parents, two spouses, two siblings, an adult child and

a cousin or relative and comprised of nine males (66.7%), and six (33.3%) females.

In terms of education, seven (46.7%) of the family caregivers completed 12 years of

formal education, five (33%) completed primary school education, one (8.3%)



107

completed secondary school and one (8.3%) completed the informal education

offered in the Islamic schools. With regard to the occupational status, seven

caregivers were employed (46.7%), four were unemployed or retired (26.7%), three

were homemakers (20%) and one was a student (6.7%). All the participants were

married, and one of them reported that her husbands practiced polygyny which is

legal in Oman and aligns with the Arabic custom. A majority of the caregivers

reported having 5-10 additional dependents apart from the individual with TBI

(53.3%), two (13.3%) participants had over 10 dependents, and four (26.7%) had up

to five dependents. Only a single family caregiver had no other dependents (6.7%).

Of the participants, nine identified themselves as the primary caregiver, three

reported that their female spouses were the primary caregiver and three informed that

the role of caring for the individual with TBI was a task shared by various

individuals in the family and/or community and everyone had a set of duties

4.3.2 Measures

Demographic form: A demographic form was given to the family caregivers. The

form comprised of details of their age, level of education, occupational status, health

status and marital status.

Interview: A semi-structured interview, that explored the caregiver’s experiences

of care. The probes covered the caregiver initial reactions and experiences at the

hospital, their post hospital care, their challenges and coping. Examples of some

probes are as follows-

1. Your family member was involved in a road accident and was admitted to the

hospital. Tell me about your experience (or what was it like) when your loved

one was in the hospital after the road crash.



2. I understand that at some point the doctor (or nurse / other) told you that your

family member would be returning home. Please tell me about that. How was

that experience for you?

3. How are you managing with X today? What is life like for you?

See Appendix I and Appendix J for the Interview schedule and Demographic form.

4.3.3 Procedure

Ethics

The ethical clearance for this study was granted by the Ethics Committee of the

Ministry of Health, Sultanate of Oman, Medical Research Ethics Committee

(MREC), College of Medicine & Health Sciences, Sultan Qaboos University (REF.

NO. SQU-EC/5/17 MREC#1508) and the Queensland University of Technology

(QUT) Human Research Ethics Committee (UHREC Clearance Number

1700001048).

Method

Data were collected in the Outpatient Department (OPD) of the Neurosurgery

Ward in the Khoula Hospital, Oman. After the ethical clearance, the author was

provided details of 73 patients who were schedueld for their follow up visists. The

research Assisstant was a local Psychologist who was given an approved script to

invite the patients to participate in the study with their family member via telephone.

Those that voluteered were given a date and time for an appointment with the author

the research assistant. As such, 17 family caregivers agreed to participate in the study

(Please refer to Chapter 3, section 3.3.3 for the detailed procedure). Out of the 17

participants, 2 dropped out of the audio-recorded interview owing to time constraints.



109

On the date of the scheduled appointment, the Research Assistant would once

again provide verbal information regarding the study and provide the participants

with information sheets. The participants were assured complete anonymity and were

given the right to withdraw from the study at any point in time. They were informed

that they may edit or withdraw their statements for up to two weeks after the

interview. After this, the data was translated and transcribed for analysis. After

clarifying any queries and collection of verbal and signed informed consent from

both the caregiver and the individual with TBI, the researcher would commence the

collection of data, with the assistance of the Research Assistant. The caregiver was

then invited to participate in a qualitative interview that would be audio recorded. On

acquiring their consent, the individual with TBI was escorted to the assigned waiting

area and the author and the Research Assistant would commence the interview with

the family caregiver. The interviews lasted for approximately an hour and

participants were offered refreshments or breaks. Intermittently through the course of

the interview, the Research Assistant would translate the responses to the author of

this study, who guided the interview. At the end of the interview, the author would

remind the caregiver that he or she can withdraw from the study and add or remove

statements, using the telephone number provided on the information sheet, up to two

weeks after the interview. After this time period, the interview would be reviewed,

translated, transcribed and analyzed for the purpose of this study.

4.4 FINDINGS

4.4.1 Data analysis

All the interviews were audio-recorded. The data obtained from family

caregivers, who did not wish to retract their participation or edit their statements

from the study, were translated. Translations were carried out with the assistance of



the Research Assistant, who played back the interview and would translate them to

English. This was then verified with the help of a volunteer translator. Back

translation was then conducted with the assistance of the Research Assistant. The

author of the study then proof-read and analyzed the data in the transcripts using the

thematic approach developed by Braun and Clarke using the 6-phase guide of

research (Braun, Clarke, Hayfield, & Terry, 2018). The transcripts were read

multiple times in order to enhance familiarity with the data, and subsequently

identify the codes. These codes were categorized into themes using NVIVO 12 (See

Examples in Appendix K). In order to assess the level of accuracy of the themes,

inter-rater reliability was tested with the help of the supervisor 3, who was requested

to review 3 transcripts and cast themes into categories. The themes were reviewed

and eventually defined and reported by the author in this study.

4.4.2 Reflexivity

The author of this study has lived in Oman for over 10 years and has a clear

understanding of the local culture. She has worked in the local hospitals in Oman and

has had a significant exposure to families and individuals with TBI from RTC.

Supervisor 1 is a Muslim who understood the principles of Islamic teachings and has

worked extensively with various cultures around the world. Supervisor 2 is

Caucasian with an expertise in neuropsychology, and supervisor 3 is also Caucasian

and has done extensive studies on RTC related injuries and behaviors in Oman.

Supervisor 4 is a renowned Omani expert in behavioral medicine, with extensive

publications in TBI and mental health in Oman.

4.4.3 Findings

The findings from this study unearthed the experiences of family caregivers

at two distinct stages since the RTC and also identified a number of ‘challenges’ and



111

‘coping mechanisms. The first theme involves the hospital experiences that the

family caregivers underwent while the individual who survived the RTC was in

Intensive Care Unit (ICU) and was diagnosed subsequently with TBI. This stage

encompasses all the feelings, interactions with family and clinicians, and the process

of discharge. The second theme was the stage of transition from the hospital to the

home and the changes to lifestyle experienced by the members of the family. The

other themes that emerged were the challenges faced by the family caregivers as a

result of caring for the individual with TBI, both long term or short term. These

challenges would result in various coping methods that are continually employed for

the family caregiver to carry on with their lives while undertaking the added role.

These challenges and the coping methods were found to impact the perception of the

experiences of caring in Oman for an individual with TBI. Please see Figure 4.1.

The findings are elucidated below:

Figure 4.1. Themes of Family Caregiving in Oman



Theme 1: Experiences in The Hospital, Admission and Discharge

Apart from 2 of the participating family caregivers, none of the others were

involved in the RTC and came to know of the RTC that their individual with TBI

was involved in through social media messaging platforms or through phone calls

from family members or the hospital staff in Oman.

Initial Shock and Grief

All the family caregivers in this study expressed worry, shock and a sense of

foreboding on coming to learn that their relative had been injured in an RTC. In

order to describe their feelings, they used words that were translated as “helpless”,

‘depressed’, ‘worried’ and being ‘scared’ or ‘terrified’. Many family caregivers

experienced a sense of foreboding that their individual may have already or would

eventually perish as a result of the injuries from the RTC. A 54-year-old father said

“I thought Allah took away my child… We started to prepare for the worst. We

thought we will never see our daughter again…”

Quality of Communication with Clinicians

Although the family caregivers in this study generally felt satisfied with the

quality of care their individual with TBI received in the ICU, they felt incognizant of

the ongoing situation with the individual with TBI. This was mainly because the

caregivers felt that they were not receiving updates regarding their individual with

TBI as frequently as they would have liked. They were unaware of the implication of

a TBI or the available or executed treatment plan. A 63-year-old father that

participated in the study recalled, “For an entire week after my son arrived at the

hospital, I had no idea why he was going through so many treatments and surgeries.



113

No one explained how he was or what happened …if I asked the nurses, they would

tell me to ask the doctors. They were not allowed to talk to me about the patient!’

Perception of Facilities in the Hospital

Despite not being allowed to wait outside the ICU in the Khoula Hospital,

family caregivers would not heed the requests of the nurses on duty. Leaving the ICU

while their individual with TBI was still there made family caregivers feel like they

were abandoning their relative. A 28-year-old cousin of an individual with TBI who

participated in the study said, ‘While our brother is in there, we cannot leave him

alone! They cannot ask that of us!’ Caregivers expressed shock at the inadequacy of

facilities, such as chairs, outside the ICU, and as a result were very uncomfortable as

they waited for updates regarding their individual with TBI in the ICU. The 63-year-

old father said ‘I asked (the nurses) to give me a sheet to cover myself under the cold

air conditioners, but they never helped me. When I was tired, I wanted to lie down

but the hospital floor was disgusting. My animals in the farm have better living

situations!”

Feeling of Abandonment

Once the individual with TBI was transferred to the ward from the ICU, most

of the family caregivers were expected to care for the individual with TBI, with

support from the nursing staff and visits from the doctors and surgeons on the

medical rounds. However, several caregivers indicated that they felt ignored by the

clinicians and were not satisfied with the quality of the care rendered to their

individual with TBI and felt neglected. A 36-year-old mother who had two sons in

ICU after the RTC recalled that the medical staff expected one of her sons to die as a

result of his injuries. She said, “I think he stayed for 15 days without a file.…. they



told me no treatment, nothing will save him…that’s why they left him without any

treatment…they ignored a wound on his leg, and that got infected eventually.”

Perceived Insensitivity of Clinicians

Family caregivers reported feeling “left in the dark” or “ignored” and

“uncared for” by the doctors who were treating their individual with TBI. Some

caregivers expressed anger and shock at doctors insensitively anticipating the demise

of their patient, and thus expecting the relatives and caregivers to leave the hospital

premises until their individual succumbed to his or her injuries. A 52-year-old father

whose son was in a very critical condition after the RTC remembered, “When I asked

them to help my son when he was shaking so violently, they threatened to send me

back to the (regional hospital). I begged (the doctor) to come see him, and he

ignored me.”

On the other hand, some of the family caregivers recalled ‘comforting’

conversations with the clinicians. They perceived the hospital staff as very sensitive

and had open and frank conversations with them. A 40-year-old mother disregarded

any negative memory by saying, ‘I am fully satisfied with the care that was provided

to my daughter…the most important person was (the Patient) …the way they treated

us was not as important.’

Seeking Medical Care Abroad

It was largely due to the general perceived compromised quality of care

received in the hospital in Muscat, that most of the family caregivers considered or

sought treatment outside of Oman, as they expected better healthcare with the desired

outcome, at more economic costs. These decisions were also made in consultation

with other family members, sometimes disregarding the advice of the clinician. But

in certain cases, the nursing staff or doctors would advise the family caregiver to take



115

the individual abroad for further care. The previously mentioned 36-year-old mother

of two individuals with TBI recalled, ‘A nurse advised me to take my son abroad.

She told me if I did not take my son abroad for treatment, he would die here.’ One of

the fathers, a 41-year-old said, “We went to (another country) with my son when he

was not speaking and not walking, where they offered so many types of treatment. He

came back walking and speaking…That was the outcome of our medical trip

(Abroad).”

Reaction and Preparedness for discharge from hospital:

All the family caregivers reported that they felt relieved and overjoyed at the

prospect of being able to bring their individual with TBI back home. A 52-year-old

father said that although he was exhausted after spending so many months in the

hospital, he was happy to return home and he believed that ‘Only family can do

certain things, that even the doctors cannot do.’ This claim was later supported by

the other participating caregivers as well, who believed that the role played by the

family in healthcare could be considered more effective than that of the clinical team

in the healthcare. They believed that the family would be able to focus completely on

the needs of the individual with TBI, but doctors and other clinical staff must focus

on the needs of many. The individual with TBI was welcomed back to the home or to

his village with celebration with relatives and community members, as it was marked

as a joyous occasion. The participating cousin of the individual with TBI said, ‘The

house had light in it, because my brother returned.”

While there was an overwhelming sense of joy on the return home, most of

the family caregivers reported feeling unprepared and nervous as they were not

provided with enough information regarding the care for the individual with TBI or



general information about the TBI itself. The 66-year-old father said, ‘The doctors

did not tell us anything. Sometimes I think, maybe the doctors did not tell me

anything because they are very busy. But I cannot help wishing that they did

something to support me.”.

Theme 2: Experience of Caregiving at Home

Transition to Home from the Hospital

Family caregivers believed the medical system would not follow up with

cases as their individual with TBI once they were discharged from the hospital, and

this posed as a risk, as the family caregiver felt inadequately informed and prepared,

and felt little to no support from the medical system. The 41-year-old father said

“Some of the early issues we faced when we returned home could have been easier if

the hospital called to check on us, or if I could have called them to clarify my doubts.

But there were no such facilities available for us.”

Initial Adjustment to Role of Caregiving

As a result of the lack of communication between the hospital and the family

post discharge, family caregivers found themselves dealing with unexpected

symptoms or behaviours. A 33-year-old husband with 4 children with his spouse

with TBI said “I wish they gave us more information about how aggressive the

changes would be. When we returned home, it felt like everything will be okay. But

then she would get angry for everything…. her sister would call me and tell me that

she was crying and was not eating, not sleeping. She also started getting very angry

with our 3-year-old son.” A 44-year-old mother who has been a family caregiver for

over 17 years said, “When we left the hospital, we were by ourselves…one time the



117

dosage (of his medication) was too strong, and he was in coma at home for 2 days

and I did not know that he was in coma...”.

Family Involvement in Decision-Making

A majority of the family caregivers preferred to make medical decisions in

consultation with their relatives and trusted family members, rather than the medical

professionals themselves. These medical decisions involve details regarding follow

up appointments with the physiotherapy, treating surgeon or physician, timely

provision of medication and seeking opinions from other doctors. The 44-year-old

mother said, “Sometimes the doctors know that my son does not need the

medicine…but they don’t tell me! So I rely on my family to advise me, or I think

about it for a while and then I decide what to do.”

Self- Learning

Owing to the mistrust the participants had in the medical system in Oman,

most of them reported having to learn about TBI and make decisions on medical

treatment via social media applications and the internet. A 54-year-old father said

“Sometimes in the night I would wake up and see my wife on YouTube, looking at

videos for treatment…then the next day she would tell me, oh we should try this herb,

or we should do yoga. She would tell me stories about patients and families with TBI

from America or Europe, and what they did.”

Re-identification of Self

A few of the family caregivers experienced a conflict between their previous

independent identity and the new role that they had to play. The 44-year-old long

term caregiving mother said that her family refers to her as “the mother of (the



individual with TBI)”, rather than her own name. Another mother (36-year-old)

shared a similar experience saying “I no longer feel like myself. I have not slept or

gone to the salon or looked after myself since all this began.”

Theme 3: Challenges

Roles defined by Gender

It was observed that there existed an expectation of care based on the gender

of the individual with TBI and the family caregiver. Based on the gender of the

individual with TBI, the roles of the males varied. But predominantly, males played

instrumental tasks such as bringing home the income or transportation. Females on

the other hand, were expected to care for the individual with TBI in the home and

provide meals, support with exercises and education and generally meet all their

needs. But if the individual with TBI was a male, the males would help with

activities of personal hygiene (moving to the toilet, showers and dressing) and with

the physiotherapy.

The females in the study such as the 26-year-old wife described the social

pressure saying, “My family decided that I am the one who would be completely

responsible for him. I did it all on my own, without any help at all.” Male caregivers

shifted the responsibility of care to the females and home and thus felt less pressure.

Such is the case for the 63-year old father who said “At home, his mother takes care

of him. She supported him when he needed to go to the bathroom. She fed him. She

did everything…and I just felt like a bird that flew out of its cage. She looked after

him more than anyone else.”

Time Management



119

Participants observed that in the early stages of adopting the role as the

family caregiver right after the discharge from the hospital, they spent almost all of

their time tending to the needs of their individual with TBI, and not being able to

make time to spend on their own personal needs. An adult sibling of the individual

with TBI had to balance his time between his consanguineous family and his family

by affinity since his brother’s injury, ‘I try to balance with both my families…. but I

am really trying. It is really hard balancing both houses.”

Changes in Social Life

All the participants said that after the individual with TBI was discharged and

left to the care of the family caregiver, there was a clear decline in their ability to

indulge in social life. They avoided or were unable to attend social gatherings such as

weddings or Eid parties (Islamic Festival) in order to care for the individual with

TBI. For instance, a 52-year-old father said “If we are invited for any family

gathering, we cannot go. Transport is difficult. My son is a fully-grown man. So,

carrying him and moving around is not easy. Our entire family has to change their

life for him.” However, depending on the rate of the recovery, it was observed that

the caregivers were able to resume these social affairs with adjustments.

Rehabilitation and Medical Management

The family caregivers reported that the medical system in Oman does not follow up

with the individual with TBI once he or she is discharged from acute care, which

resulted in anxiety and poor adjustment. Appointments for physiotherapy or follow

up with the neurologist or neurosurgeons are scheduled in the outpatient department.

A 44-year-old mother recalled, “When we left the hospital, we were by ourselves. No



one checked on us, no one asked about us. They took care of us well while were in

the hospital. Once we left, we were on our own.”

Financial Strain

Although the family caregivers were able to harness financial resources from

the support of the government or their family and community, most of the

participants reported the burden of financing the treatment required for the individual

with TBI, during and after discharge. The 54-year-old father said, “I am retired now

and treatment is very expensive…but our family has helped a lot…they always said

money should not be the reason for our son not getting some type of treatment…so

money has been okay for us, but not easy at all.”

Impact of Caregiving on Interpersonal Relationships

Siblings: While siblings conducted themselves in what they considered as

“their duty to the family”, there did emerge conflicts and disagreements. Parents

reported that while they were able to be patient with the changes in behavior and

temperament post TBI, the siblings experienced frustrations, such as 33-year-old

brother who participated in the study said “My brother has duties and responsibilities

and he should fulfil it. He cannot be this lazy!” They also felt that they had to aid in

alleviating the pressure experienced by their parents in caring for the individual with

TBI. One of the adult siblings that participated in the study explained his role to his

family, ‘My parents are too old to care for an adult man like my brother. So, I

decided to do it. I can help them like that.’

Spouses: While most of the caregivers did not discuss aspects of their

marriage, those that did shared a strained relationship with their spouse as a result of

being burdened with the responsibility of care and not being able to spend quality



121

time with the spouse. Participants reported that their marriage were failing as their

spouses were drifted away from them. In other cases, the married person with TBI

encountered terminations of their marriages as their spouses abandoned them and

developed ties with someone else. The 40-year-old mother described both her own

marital distresses well as the divorce of her daughter with TBI, a single mother to a

2-year-old son. “Her husband did not want to take her out or to her appointments…

he said that he does not want to be responsible for her.” Of her own marriage she

said, “My husband has a second wife…so he has another life...in the beginning, he

used to ask about her, now nothing… I tell my daughter all the time…your family

will always be there for you…but not your spouse…your family will be your

strength…”. Another 44-year-old mother said that since her daughter was diagnosed

with a brain injury, she has been anxious that her husband might take on a second

wife, “I no longer can take care of my skin or my face, or my body. I am scared he

will marry another and leave me alone.” A 33-year-old husband who participated in

the study felt that “The TBI destroyed our life … I know I can marry another if I

want to.”

Other dependents: Family caregivers described their commitment to other

dependents in their care, such as elderly parents, wives and children. The family

caregivers felt that they were able to balance the needs of their dependents, however

they would feel the pressure of the responsibilities. The 41-year-old father described

his responsibilities to be challenging. “I need to look after him as well as his

brothers and sisters. He is not the only one who needs me. Sometimes I feel the

pressure and strain and the tension. I fight a lot. I get angry quickly. It is all too

much for me sometimes.

Anxiety and Concern about the Future



Participants in the study observed that since the RTC and the subsequent

diagnosis of TBI, they are more anxious and worried about the welfare of the other

relatives as well as the future of the individual with TBI. The 63-year-old father fears

for his son, “Who will take care of him after I am gone? No one else can manage

him. He will surely die or be abandoned.”

Social Stigma

Although this did not appear common among the family caregivers in this

study, some of them recalled that their concern that their individual with TBI might

unknowingly offend members in their or their extended family or be a harm to

themselves. The 63-year-old father recalled his neighbor’s reaction to his son’s

behaviors, “He takes people’s cars and wrecks them. He gets into fights. Our

neighbors have reported him to the police many times. They don’t understand that he

is sick.”

Lack of Trust in Current Medical System in Oman

Family caregivers that perceived the medical care provided in the hospital in

Oman to be inadequate, subsequently reported feeling failed, let down or not trusting

the current system that is in place in the country. A 54-year-old father said “How can

I trust them after how they treated my son and I? They need to improve their services

and be kind to the families!”

Theme 4: Coping Techniques

Cultural, religious and personal values

It was largely noted that the family caregivers sought comfort and

rationalized negative experiences through their religious beliefs and the teachings of



123

Islam, including the belief in pre-destination (قدر) , described by the Oxford

dictionary as “the determination of an outcome or a course events in advance by

divine will or fate.” (Oxford Dictionary) Some of the caregivers on hearing the news

of the RTC and the diagnosis of TBI remembered their faith and sought comfort

saying, “Allah has written the day of death for everyone, and for everyone it will

come to pass”. The participants also shared their personal belief systems that helped

them cope with the pressure of caregiving. The 28-year-old cousin believed it was

his duty to care for family members in need “In our culture, it is written that we are

one hand, a fist. When something happens to anyone in our community, whether

family or not, we should help one another.” Marriage is a significant milestone in

the Arab families, and a few of the family caregivers would seek out suitable

alliances for their individual with TBI. This was particularly seen among families

whose individual with TBI were diagnosed with mild TBI. The families were

unaware or dismissed subtle behavioral changes in their individual with TBI. The 64-

year-old father regretted his decision to have his son married as he said “I thought it

might be a good idea for him to get married. As time has passed, I can see that it

does not help anyone involved.”

Family and Community Support

All the family caregivers acknowledged the role of the members of their

extended family and their community while adjusting to adopting the new role as

caregiver to the individual with TBI. Support from the extended family and

community extended from providing practical support to monetary support. One of

the mothers shared “My family has been present throughout this journey. My mother

and sisters advise me so much. They give me hope. They teach me how to manage



everything…I owe everything to them…when I could not do something, they would

step in for me…they helped me with my baby, with food, with my house…they did

everything that I was unable to do.” Another caregiver said that their family played a

significant role in the financial care for her son, “My husband would get money in his

bank from anonymous family members or friends because they wanted to help…. or

some would give money to my husband’s hand and say, ‘this is for (the individual

with TBI)’. His uncles and aunts opened a bank account just for his tuition.”

4.5 DISCUSSION

The present study applied the qualitative method to explore the lived

experiences of family caregivers of individuals with RTC incurred TBI in the

Sultanate of Oman. This study, to our knowledge, is the first of its kind conducted in

Oman and in the Arab region. The results from this study indicates cultural factors

such as collectivism, religion and gender played a significant role in their perception

and experiences in caring for the individual with TBI. The themes that emerged

identified challenges and coping mechanisms adopted by family caregivers

throughout the stages of hospitalization and transition to the home in order to

continue with their lives.

Much like the previous literature, family caregivers experienced shock and

grief on hearing that their relative was in emergency care after having been involved

in an RTC and were preoccupied with thoughts of impending death of the individual

(Benjamin Turner et al., 2007). However, unlike previous studies where family

caregivers were in denial about the predicament of their family member (Saban,

Hogan, Hogan, & Pape, 2015), the caregivers in Oman accepted the situation as the

will of God. In order to acquire relief from their grief, they sought comfort through

communication with clinicians (Schutz et al., 2017). Throughout their time in the



125

hospital, the family caregivers in this study sought for “hope” for when the

individual diagnosed with TBI was in critical care (Schutz et al., 2017). Clinicians

that extended hope at the time of the crisis were regarded positively, while clinicians

that were unable to extend hopeful prognosis of recovery for the families were cast

into a negative light (Wenrich et al., 2003). In previous literatures, family caregivers

find that the onset of the decline of their psycho-social health begins at the time of

discharge (B. J. Turner et al., 2008). In contrast in this study, the role of the family

caregiver commences when the individual with TBI is discharged from the ICU and

is in the in-patient ward. The family caregivers are expected to care for the individual

with support from the nursing staff and routine clinical visits from the surgeons and

doctors.

Not unlike previous studies, the social support in the form of extended family

and from their own personal beliefs systems and faith were vital when they were

unsatisfied with the medical treatment offered to their individual with TBI (Padela et

al., 2011). Most of the family caregivers that received medical care in Oman felt

abandoned as they were unaware of the serious complication linked with TBI and did

not have access to support systems in the community (Benjamin Turner et al., 2007).

In fact many family caregivers preferred to make medical decisions for the individual

with TBI after consultation with their family members and close associates in the

community who provided instrumental, emotional and financial support (Hodges,

2015; Petkari, 2015) (Knox, Douglas, & Bigby, 2016).

A previous review paper indicated that over 80% of patients in Oman prefer

to seek treatment abroad owing to factors such as economical care, better quality of

health care and services and seeking a second opinion for diagnosis (Al-Hashar &

Al-Zakwani, 2018). That trend is visible in the present study, where family members



and the caregivers preferred to seek the treatment in critical care for their family

member abroad. It was further understood that a smoother transition from the

hospital to the home led to better outcomes of adjustment for the individual with TBI

as well as the family caregiver (Nalder et al., 2012). At the time of discharge,

families were met with feelings of excitement and relief coupled with anxiety at the

prospect of returning home (Wenrich et al., 2003). All the family caregivers in this

study found that the incident of the RTC and the subsequent diagnosis of TBI led to

changes in their activities of daily living, including declined social interactions, a

sense of grief and loss, and overall changes in the family structure as well (Knox et

al., 2016; Tam et al., 2015). While the experiences of family caregivers in Oman

during the stage of hospitalization and discharge to transition to the home, there

seems similarities with already existing literature. However, there are significant

contrasts to the challenges and the coping styles adopted by the family members in

Oman to cope. Behavioral and personality changes resulting from TBI tend to impact

the family caregiver, regardless of the type of relationship. Parents felt a sense of

guilt and responsibility towards their adult child with TBI, coupled with an anxiety

about their future and their welfare, while spouses found that the TBI affected the

quality of their relationship and experienced resentment towards their partner (Kratz

et al., 2017). A unique feature to this region is the legal practice of polygamy and its

impact on the family caregivers. Within the Omani Islamic context, married

caregivers in the present study found that their relationship strained owing to the

possibility of their spouse entering a polygamous relationship. Additionally,

individuals with TBI that were in marriages prior to the RTC were divorced

subsequently as their spouses did not wish to take the responsibility of caregiving

and this pattern of marital instability has been indicated in previous literature as well



127

(J. Kreutzer, Godwin, & Marwitz, 2010; Jeffrey S Kreutzer, Gan, & Marwitz, 2017).

In this study it was made evident that there was a strain in the marital relationship

with the individual with TBI, as they struggled with post concussive symptoms such

as poor impulse control, insomnia, depression, apathy and trouble with concentration

and memory impairment (Wood & Yurdakul, 1997). Family members of the

individual with TBI held the belief that a marital alliance might resolve the mental

status of the individual (Bay, Blow, & Yan, 2012). In fact, if any cognitive or

behavioral symptom post TBI was unnoticed or could be concealed, the families

would plan for marriage and for the individual to return to the tasks undertaken prior

to the RTC, such as the completion of education or resuming occupation.

Siblings of the individual with TBI on the other hand felt a filial obligation to

the entire family, in particular to their parents (Stein et al., 1998). This was unlike

findings in the West, where siblings of individuals with TBI were apprehensive of

future care that they might have to provide and the expectation that their relative

would deteriorate (Degeneffe & Olney, 2008, 2010; Horwitz & Reinhard, 1995). In

the present sample, siblings took up the role of shared primary caregiver and felt that

it was their filial duty to their family to be concerned for the welfare of the individual

with TBI and their parents. Not very much unlike the previous findings, the

caregivers in the present study also found that since the TBI, they have a reduced

social life, without the ability to attend social gatherings such as weddings, or the

festival of Eid. They also experience financial strains owing to the nature of

treatment, as most of the caregivers found the facilities available to them in Oman to

be inadequate. (Caplan et al., 2015; Kitter & Sharman, 2015; Nigel V Marsh et al.,

2002)

All through the experiences that the family caregivers in this study went



through, their religious beliefs and communal support were the pivotal reasons for

comfort and strength. Unlike previous literature where family caregivers experience

denial regarding the predicament of their individual in critical care (Saban, Hogan,

Hogan, & Pape, 2015), the participants in this study indicated that their faith in God

and a belief in a predestined plan allowed them to accept the incident and the

traumatic experiences that followed. Their faith allowed them to reinterpret what

might be perceived as a stressful event. According to Corallo et al (2019), religious

beliefs endorse avoidance behaviors in order to cope with the strain of caregiving

(Corallo et al., 2019). In contrast, in the case of the present study, the family

caregivers in Oman were recruited in conventional medical settings and appeared to

accept the injury and the situation of the individual after the TBI. Their religious

beliefs encouraged them to provide unconditional love and enabled them to believe

that they were predestined for the caregiver role. In addition to this, as seen in

various collectivistic ethnic groups, the support experienced from the community in

form of monetary or practical support was a source of relief to the family caregivers

(Sabella & Suchan, 2019; Tramonti, Bonfiglio, et al., 2015).

Less obtrusive behavioral or cognitive impairments, such as memory

impairments or apathy or depression often went unnoticed or were regarded as

behaviors that were not harmful to others. All the individuals in the family were

expected to be tolerant and to cooperated with these changes in behavior. However,

unlike previous studies where caregivers were coping better with physical ailment

than behavioral or cognitive (Baker et al., 2017), families in Oman seemed well

adjusted with the behavioral impairment as a result of TBI and believed that

encouraging the individual to resume their activities of daily living, they could be

rehabilitated. It is possible that the reason why physical impairments were more



129

distressing to the families in Oman, is because most of the individuals with TBI were

young males in the prime of their youth and were unable to return to work or provide

financially to the family. It was also noted that the role of caregiving would be

switched over to the female, in addition to other domestic duties such as cooking and

tending to the other children and this was a general expectation from the Omani

family as well (Sharma et al., 2016). Males were more involved in the instrumental

tasks such as hospital care, accompanying the individual with TBI for travel and

maintaining financial income (Lee & Tang, 2015).

Contradictory to previous studies, family caregivers in Oman did not find

themselves isolated (Gan et al., 2010; Mavundla, Toth, & Mphelane, 2009; Phelan et

al., 2011) after adopting the role of caregiving, as there was a large communal

support, and relatives and families in the region would visit an ailing family member

in their home. Some of the family caregivers tended to isolate themselves as well as

the individual with TBI in order to prevent the feeling of shame or embarrassment, or

as a means of protection. As the caregiver fit into the new role, this pattern

subsequently changed, provided that the individual did not exhibit ailments that

distressed others in the extended family or community. Overall, while there are

trends in the experience of caregiving in Oman that are similar to previous literature,

there also are differences based on the culture, the type of clinical services and the

social features prevalent in this region. This study has offered a glimpse into the

experiences of family caregivers from its onset and has further emphasized the

importance of family-focused health care services in this region.

4.6 IMPLICATION OF THE STUDY

The findings in this study are the preliminary work to fill the scientific gap in

this field. In the Omani context, culture and health often entwines, and the results in



this study are reflective of the same. To the author’s knowledge, this study is the first

to examine and explore the experiences of family caregivers of individuals with TBI

after an RTC in Oman. It was evident from the findings of the study that family

caregivers in Oman experience multiple challenges in the course of their caregiving

role. Many findings align with previous literature, such as the trauma in the hospital,

strain in interpersonal relationships, challenges of transitioning to full-time home

care and the overall period of adjustment. However, there were also unique features

to the caregiving experience. These would include the role of the social support in

negating any experience of isolation and the religious teachings that was a motivator

to the families. It is unknown as to whether a similar trend may appear with a larger

sample or with samples from various countries around Oman in the Middle East.

Allied health services in Oman can proliferate their role in medical health through

counselling services and enhancing their services particularly after the discharge

from the hospital. The medical system in Oman must utilize the families of patients

as a resource and discharge should be regarded as a continuum in the rehabilitation

of the individuals with TBI back into society. The use of social media, establishing

interventional support groups or a telephone hotline can be considered in order to aid

the families transitioning into the role of family caregiver. This would not only prove

useful to the families with individuals with TBI but would create employment

opportunities and overall enhance the social welfare.

4.7 LIMITATIONS AND FUTURE DIRECTION

Owing to the small sample size, the findings in this study must be taken with

caution. It is possible that conducting studies on family caregivers in this region is

best suited in their place of residence, as they are often following up with other

appointments in the hospital or are unable to travel the distance to the hospital owing



131

to the demands of caregiving. Collecting data from the hospital in Oman may not

adequately represent families who seek alternative and complimentary medical

treatment. Hindsight bias may have risen in the recall of traumatic experiences,

which may have affected the way the experiences were reported or perceived and this

study offers a snapshot perspective of the experience of caregiving. Therefore, it may

be suggested that a longitudinal study be conducted to carefully examine and

understand the experiences of caregivers in Oman. Words are data in qualitative

studies and the language barrier between the principal researcher and the participants

posed as a disadvantage in this study. The non-verbal communication or subtle cues

may have been evaded, and the translation may not have been able to gauge the exact

expressions. Knowing the local language is an advantage in collection of qualitative

data, particularly for studies such as this where the topic is of a complex and

sensitive nature.

4.8 CONCLUSION

This study has added to the gap that existed in the literature by conducting the

qualitative study on family caregivers on individuals with TBI in the Sultanate of

Oman. The findings in this study can provide medical practitioners with the

perceived understanding and experiences of the families of individuals with TBI, and

tailor-make treatment and management plans in a family-focused manner.

Chapter 5: General Discussion

133


5.1 INTRODUCTION

This study was undertaken in order to shed light on the burden and

experiences of family caregivers in Oman who were responsible for the welfare of

individuals with TBI after an RTC. The first study explored family caregiver burden

by adopting the mixed methodology. The quantitative part of the study employed the

use of various measures to examine the impact of TBI sequalae and socio-

demography on the burden experience. However, the results did not offer a clear

insight into these trends but indicated that over 20% of the participants (family

caregivers) experienced severe burden. It was therefore of interest to find features of

family caregiving in Oman using the qualitative case study method, as there were

contextual and cultural factors that may not be gauged through surveys. Using this

method, the family caregivers offered an insight into their challenges and the

different coping techniques that contributed to the extent of burden that they

experienced. On understanding the burden of the family caregivers using the case

study approach, it was decided to employ a larger case study to explore the entirety

of the caregiving process and the lived experiences of the family caregivers. The

second study was a larger qualitative study and it explored the entirety of the family

caregiver experience, from the onset of the TBI and hospital care, to the transition to

their homes and the subsequent adaptation to the new role.

5.2 GENERAL DISCUSSION

It was quite visible that families in Oman, much like previous studies from

the rest of the world, do experience various stressors in their social and personal

134 Chapter 5: General Discussion

environment that impact their perception and general experience in the process of

caring. It has been recommended in the past that research on family caregivers also

take into consideration the contextual factors that affect a person’s behavioral traits,

and this is usually done by the utilization of the qualitative approach (Knight &

Sayegh, 2010). The mixed methodology is used in research when the either approach

complements the other and can clearly address the research problem (Creswell, 2013;

Creswell, Plano Clark, Gutmann, & Hanson, 2003). The present study employed a

mixed methodology and was able to highlight features in the Omani context that

affect the nature of family caregiving.

It is quite apparent in this study that as a result of the RTC, family members

were suddenly expected to adopt the role of the family caregiver, without any

warning, in addition to their already existing social roles, such as parent or spouse or

sibling or relative. The stage of hospitalization for the families was particularly

stressful. It has been evidenced in previous findings that it is quite common for

family caregivers to feel neglected or abandoned by the clinicians or perceive them

negatively (Coco, Tossavainen, Jääskeläinen, & Turunen, 2011; Hanson et al., 2019;

Jumisko et al., 2007). This negative perception of the healthcare system was evident

in the findings of this study. It subsequently impacted their ability to adjust with the

role of caring and the responsibilities. However families that received adequate

information from the physicians and testing doctors, with an open channel of

communication were found to better adjusted to the scenario of caring, even long

term (Man, 2002; Schutz et al., 2017).

Very early on, gender defined roles became apparent. While females were

expected to be the primary caregivers and were nurturing or companions, the males

in this context were responsible for various instrumental tasks, such as transportation


135

and organizing travel arrangements (Revenson et al., 2016; Schrank et al., 2016).

However, if the individual with TBI was a male, the male caregiver would play a

predominant role, and was responsible for helping with activities of daily living, such

as personal hygiene, locomotion and movement and assisting with physiotherapy.

This feature remained continuous in the family life and was marked with

apprehension and stress. Family caregivers found that with difficulty they had to

learn to balance the various roles that were expected of them. Women were expected

to care for the entirety of the home and other dependents, in addition to the

individual with TBI. As a result of the amount of time allocated to caregiving, social

life and interpersonal relationships suffered, and particularly marriage (Lee & Tang,

2015). This can be understood in alignment with Biddle’s Role Theory (Biddle,

1986). According to Biddle, human behavior is predictable and alters based on the

social role that is being played. Role theory and Role conflict occurs as result of

limited time, resources and perceived irrational expectations of one’s behavior in a

particular context. Caregiving in a collectivistic unit such as Oman implies that an

individual is not responsible for the sick member but has to also continue what is

regarded as their ‘duty’ to the remaining members of the family and community.

According to Pearlin et al. (1990), ‘conditions, experiences and activities’ in

which the process of caregiving is taking place forms the ‘heart’ of the experience of

stress in caregiving. Primary stressors and secondary stressors needed to be identified

in order to clearly examine the nature of caregiving. The features of the individual

with the TBI in this case would be classified as primary stressors, as their level of

impairment and the amount of time that was allocated for caring them determined the

burden of their family caregivers and the quality of their interpersonal relationships.

Secondary stressors arise as a result of the long-term care demanded from the


individual with TBI. Family caregivers found that the family would undergo a

complete restructuring and often felt like they neglected other dependents.

Furthermore, the tendency to favor the individual with TBI by spending more time

with them would lead to conflicts among the members of the family, and often went

unresolved. Economic strain and a tendency to be constantly preoccupied with

concern for the individual with TBI, and experiencing guilt were also evident in the

caregivers. Owing to the time spent on caring for the individual with TBI, they

would neglect their own personal needs and subsequently would find themselves in a

highly emotional state marked by grief, guilt, depression and anxiety for the future.

Yates (Yates et al., 1999) identified the role of what she called ‘Mediators’ in

the stress model associated with caregiving. Mediators comprised of factors in the

environment that aided in alleviating the strain caused by the process of care. Family

caregivers in Oman may not have access to a very adequate formal support system,

however, caregiving in Oman is considered as a communal act. Members in the

community and the family provide care assistance to the family that have an unwell

individual amongst them. Social support to family caregivers tends to reduce the risk

of the outcomes of the caregiver burden, namely depression or anxiety. Family

caregivers with access to these support systems are able to better manage the stress

of caregiving in contrast to the caregivers that do not receive adequate support (Gan

et al., 2010; Jumisko et al., 2007). In fact, unique to this population was the fact that

the caregivers never felt isolated (Gan et al., 2010; Phelan et al., 2011) as the

members in the community and extended families were willing to modify their social

activities (visiting the homes of the caregiver family) to suit the needs of the family

of the individual with TBI.


137

While these external mediators impact the experience of burden, internal

factors such as religious beliefs and personally held belief systems played a huge role

in the understanding of the role of caregiver and the TBI itself. In fact, previous

literature has highlighted that religious belief aid families as an immediate coping

strategy for a stressful event and can lead to more desirable outcomes (Corallo et al.,

2018; Pearce, Medoff, Lawrence, & Dixon, 2016; Rabinowitz, Mausbach, Atkinson,

& Gallagher-Thompson, 2009). However, it has been suggested that while religious

beliefs impact the burden of the caregivers, it also is accompanied by avoidance

strategies when faced with stressors (Corallo et al., 2019). Rather that avoiding the

traumatic experience in the present case, it appeared that their religious beliefs

enabled the family caregivers to accept the situation and the predicament of their

family member. Among the caregivers there existed a sense of filial duty and

obligation and that was considered to be more valuable than any formal or clinical

care (Albert, 1990; Lai, 2010; Tsutsui, Muramatsu, & Higashino, 2013). This is not

unlike other cultural groups where individuals have a sense of duty in which they are

expected to care for a needy person in the family (Lai, 2010).

However all of these contextual features and cultural features would not have

come to light had this study only employed quantitative methods. It has been

suggested that changes exist in the caregiver experiences among different ethnic

groups, and this is best identified through the use of qualitative methods

(Bastawrous, 2013; Calderon & Tennstedt, 1998; Son, Wykle, & Zausniewski,

2003). It is evidenced in this study that the qualitative method tends to tap cultural,

societal and personal elements that can impact the burden experience. Particularly

considering that this sample is difficult to access for the purposes of large


quantitative research, it is advisable to carry out larger qualitative or mixed studies to

generate more findings. This study is a preliminary work towards that direction.

5.3 IMPLICATIONS OF THE STUDY

Having been the first study of its kind in this region, the study draws light on

the family caregivers of individuals with TBI after RTC in Oman. While

commendably, the rate of RTC in this region has declined, the long-term effects of

TBI from an RTC continue to affect a vulnerable population of this region. TBI in

Oman has not only affected the individual but the family and community at large. In

Oman, the family caregivers truly are the ‘Hidden Patients’. Cultural factors appear

to be a double-edged sword in this case and play a role in the way distress is

expressed in this country. While it enhances various coping techniques, it also acts as

a limiter in the form of gender roles. These contextual factors highlight that while the

burden of caring in itself might be mild, family caregivers do experience an impaired

quality of life marked with grief, stress and anxiety. It is therefore advisable that

discharge from hospitals for this families be considered as a part of the rehabilitation

continuum and to enhance the roles played by social workers and psychologists in

the transition from the hospital to the home. Family focused care, with

psychoeducation and counselling services, in this region would lead to patient

empowerment and would enhance the quality of living and the quality of the service

family caregiving for individuals with TBI. Additionally, using social media services

and the implementation of support groups in the community in order for family

caregivers to interact with one another or clinicians could be of value to the families

of the individual with TBI as a coping mechanism and source of valid information.

5.4 LIMITATIONS

While the study is of significance and has important implications, it does not go


139

without its limitations. It is likely that had the sample been of a larger size, results

may be varied from the present findings. However, collecting data from the family

caregivers in Oman is a tedious task owing to the vast landscape and the lengthy

distance of travel to the venue of the research. It is thus possible that this research

may more suitably be conducted in the residences of the participants. Having had

access to archived data limited the methodology of the quantitative study, and in

future a different research design with the utilization of other assessments may yield

results that vary from that of the present study. Indeed, many of the measures

available for analysis were developed in Western populations and it is possible that

they may not have been able to gauge into the Arab experiences as effectively.

In a qualitative study, it is advantageous to be able to communicate with

participants in the language of their choosing. The inability of the author to

communicate directly with the participants is another limitation to this study. As the

author is not a native speaker, the services of a trained local psychologist were

employed, but this may have resulted in loss of data in translation. However, in this

research, the author was not a native speaker of Arabic and hence utilized the

services of a trained psychologist who was an Omani national. Hindsight bias may

have influenced the responses of the family caregivers on this research, and thus

experiences relayed may have been subjected to a skewed judgement of events. This

can be tackled with the utilization of a longitudinal method with periodic data

collection for future research.

5.5 FUTURE DIRECTIONS

The resolution of the limitations of this study would result in a significant

amount of research in the future. The scales used in caregiver assessments needs to

be validated to the population and be administered on a larger sample size. Larger


and longitudinal qualitative studies may also help in further unpacking features that

cannot be evaluated quantitatively, such as the cultural and religious factors.

Practically, this study has shed light on the importance of psychoeducational services

and support services for patients with TBI and their families, thus creating

employment opportunity and enhancing the overall medical services.

5.6 CONCLUSION

The basis for this study was to examine and evaluate the burden and lived

experiences of family caregivers of individuals with TBI in Oman. The findings in

this study support previous literature where caregivers do experience a variety of

challenges and stressors and employ various coping strategies.

This study has attempted to address the gap in the literature and adds to the

research on the burden and experiences of family caregivers in Oman who are coping

with the needs of an individual with TBI and is a preliminary foundation to further

research in this field. The methodology has highlighted the role of cultural influences

on lifestyle and coping in Oman. The current dissertation has placed a preliminary

caregiver research in Oman on the scientific map and can assist clinicians with

providing medical care with a special focus on the family.

Bibliography 141

Bibliography

Abdelmoneium, A. O., & Alharahsheh, S. T. (2016). Family home caregivers for old

persons in the Arab region: perceived challenges and policy implications. Open

Journal of Social Sciences, 4(01), 151-164.

http://dx.doi.org/10.4236/jss.2016.41019

Adams, D., & Dahdah, M. (2016). Coping and adaptive strategies of traumatic brain

injury survivors and primary caregivers. NeuroRehabilitation, 39(2), 223-237.

http://dx.doi.org/10.3233/NRE-161353.

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014).

Caregiver burden: a clinical review. Jama, 311(10), 1052-1060.

http://dx.doi.org/10.1001/jama.2014.304

Ahaddour, C., Van den Branden, S., & Broeckaert, B. (2018). “What Goes Around

Comes Around”: Attitudes and Practices Regarding Ageing and Care for the

Elderly Among Moroccan Muslim Women Living in Antwerp (Belgium).

Journal of Religion and Health, 57(4), 1-27. http://dx.doi.org/10.1007/s10943-

018-0562-x

Al-Aamri, A. K., Padmadas, S. S., Zhang, L.-C., & Al-Maniri, A. A. (2017).

Disentangling age–gender interactions associated with risks of fatal and non-

fatal road traffic injuries in the Sultanate of Oman. BMJ Global Health, 2(3),

Article e000394. http://dx.doi.org/10.1136/bmjgh-2017-000394.

Al-Adawi, S. (2017). Mental Health Services in Oman: The Need for more cultural

relevance. Oman Medical Journal, 32(2), 83-85.

http://dx.doi.org/10.5001/omj.2017.17

http://dx.doi.org/10.1136/bmjgh-2017-000394

https://dx.doi.org/10.5001%2Fomj.2017.17

142 Bibliography

Al-Adawi, S., Al-Busaidi, Z., Al-Adawi, S., & Burke, D. T. (2012a). Families

Coping With Disability Due to Brain Injury in Oman. Sage Open, 2(3), 1-8.

http://dx.doi.org/10.1177/2158244012457400

Al-Adawi, S., Al-Busaidi, Z., Al-Adawi, S., & Burke, D. T. (2012b). Families coping

with disability due to brain injury in Oman: Attribution to belief in spirit

infestation and ensorcellment. Sage Open, 2(3), 1-8.

http://dx.doi.org/10.1177/2158244012457400

Al-Adawi, S., Al-Naamani, A., Al-Farsi, Y., Essa, M. M., Burke, D. T., El-Bouri,

M., . . . MacFarland, A. S. (2016). Elucidating the neuropsychological profile of

apathetic syndrome and disinhibition syndrome in a brain-injured population in

Oman. International Journal of Nutrition, Pharmacology, Neurological

Diseases, 6(1), 35-45. http://dx.doi.org/10.4103/2231-0738.173787

Al-Adawi, S., & Burke, D. T. (2001). Revamping neurorehabilitation in Oman.

Sultan Qaboos University Medical Journal, 3, 61-64.

Al-Adawi, S., Dorvlo, A. S., Al-Naamani, A., Glenn, M. B., Karamouz, N., Chae, H.,

Zaidan, A.J., Ziad & Burke, D. T. (2007). The ineffectiveness of the Hospital

Anxiety and Depression Scale for diagnosis in an Omani traumatic brain injured

population. Brain Injury, 21(4), 385-393.

http://dx.doi.org/10.1080/0269905070131105

Al-Adawi, Samir; Dorvlo, Atsu SS; Al-Ismaily, Suad S; Al-Ghafry, Dalal A; Al-

Noobi, Balquis Z; Al-Salmi, Ahmed; Burke, David T; Shah, Mrugeshkumar K;

Ghassany, Harith; Chand, Suma P (2002). Perception of and Attitude towards

Mental Illness in Oman. International Journal of Social Psychiatry, 48(4), 305-

317. http://dx.doi.org/10.1177/002076402128783334

Bibliography 143

Al-Alawi, M., Al-Sinawi, H., Al-Adawi, S., Jeyaseelan, L., & Murthi, S. (2017).

Public perception of mental illness in Oman: A cross sectional study.

International Journal of Culture and Mental Health, 10(4), 389-399.

http://dx.doi.org/10.1080/17542863.2017.1325916

Al-Asmi, A., Al-Rawahi, S., Al-Moqbali, Z. S., Al-Farsi, Y., Essa, M. M., El-Bouri,

M., Koshy, R., Gujjar, A.R., Al-Hodar, A. & Al-Adawi, S. (2015). Magnitude

and concurrence of anxiety and depression among attendees with multiple

sclerosis at a tertiary care Hospital in Oman. BMC Neurology, 15(1), 131-139.

https://dx.doi.org/10.1186/s12883-015-0370-9.

Al-Asmi, A., Al-Rawahi, S., Al-Muqbali, Z., Nandhagopal, R., Jacob, P., Gujjar, A.,

& Al-Adawi, S. (2013). Magnitude and concurrence of anxiety and depression

among attendees at tertiary care neurology unit in Oman with multiple sclerosis

(MS). Journal of the Neurological Sciences, 333, Article e378.

https://dx.doi.org/10.1016/j.jns.2013.07.1376.

Al-Asmi, A., Dorvlo, A. S., Burke, D. T., Al-Adawi, S., Al-Zaabi, A., Al-Zadjali, H.,

Z.,Al-Sharbati & Al-Adawi, S. (2012). The detection of mood and anxiety in

people with epilepsy using two-phase designs: experiences from a tertiary care

centre in Oman. Epilepsy Research, 98(2-3), 174-181. https://doi.org/

10.1016/j.eplepsyres.2011.09.012.

Al-Balushi, N., Al-Alawi, M., Al Shekaili, M., Al-Balushi, M., Mirza, H., Al-

Huseini, S., Panchatatcharam, S.M., Al-Sibani, N., Cucchi, A. & Al-Adawi, S.

(2019). Predictors of Burden of Care Among Caregivers of Drug-Naive

Children and Adolescents with ADHD: A Cross-Sectional Correlative Study

144 Bibliography

From Muscat, Oman. Journal of Attention Disorders, 23(5), 517-526.

https://doi.org/10.1177/1087054718808381

Al-Barwani, T. A., & Albeely, T. S. (2007). The Omani Family. Marriage & Family

Review, 41(1-2), 119-142. https://doi.org/10.1300/J002v41n01_07

Al-Hashar, A., & Al-Zakwani, I. (2018). Omanis traveling abroad for healthcare: A

time for reflection. Oman Medical Journal, 33(4), 271-272.

https://doi.org/10.5001/omj.2018.5

Al-Kashmiri, A. M., Al-Shaqsi, S. Z., Al-Kharusi, A. S., & Al-Tamimi, L. A. (2015).

Save the patient a trip. Outcome difference between conservatively treated

patients with traumatic brain injury in a nonspecialized intensive care unit vs a

specialized neurosurgical intensive care unit in the Sultanate of Oman. Journal

of Critical Care, 30(3), 465-468. https;//doi.org/10.1016/j.jcrc.2015.02.010

Al-Lawati, J. A., Mabry, R., & Mohammed, A. J. (2008). Peer reviewed: addressing

the threat of chronic diseases in Oman. Preventing Chronic Disease, 5(3),

Article A99.

Al-Mandhari, A., Al-Adawi, S., Al-Zakwani, I., Al-Shafaee, M., & Eloul, L. (2009).

Relatives’ advice and health care-seeking behaviour in Oman. Sultan Qaboos

University Medical Journal, 9(3), 264-271.

Al-Naamani, A., & Al-Adawi, S. (2007). 'Flying coffins’ and neglected

neuropsychiatric syndromes in Oman. Sultan Qaboos University Medical

Journal, 7(2), 75-81.

Al-Reesi, H., Ganguly, S. S., Al-Adawi, S., Laflamme, L., Hasselberg, M., & Al-

Maniri, A. (2013). Economic growth, motorization, and road traffic injuries in

Bibliography 145

the Sultanate of Oman, 1985–2009. Traffic injury prevention, 14(3), 322-328.

http://doi.org/ 10.1080/15389588.2012.694088

Al-Saadoon, M., & Al-Adawi, S. (2019). Informed Consent in Societies with

Different Ethos of ‘Selfhood’. Sultan Qaboos University Medical Journal,

19(1), Article e1. https://doi.org/ 10.18295/squmj.2019.19.01.001

Al-Sinawi, H., & Al-Adawi, S. (2006). Psychiatry in the Sultanate of Oman.

International Psychiatry, 3(4), 14-16.

https://doi.org/10.1192/S1749367600004963

Al‐Bahri, A., Al‐Moundhri, M., Al‐Mandhari, Z., & Al‐Azri, M. (2018). The role of

patients’ families in treatment decision‐making among adult cancer patients in

the Sultanate of Oman. European Journal of Cancer Care, 27(3), Article

e12845. https://doi.org/ 10.1111/ecc.12845

Al Alawi, M., Al Sinawi, H., Al Maqbali, M., & Al Hatmi, H. (2016). Perception of

Stigma among Attendees of Tertiary Care Psychiatric Clinic in Oman.

International Journal of Public Health and Safety, 1(108).

http://dx.doi.org/10.4172/ijphs.1000108

Al Balushi, A. A. (2019). Female patients and informed consent: Oman’s cultural

background. Sultan Qaboos University Medical Journal, 19(1), Article e11.

http://dx.doi.org/10.18295/squmj.2019.19.01.003

Al Balushi, N., Al Shukaili, M., & Adawi, S. A. (2017). Burden for caregivers of

children with attention-deficit/hyperactivity disorder in Oman. European

Psychiatry, 41, S120-S121. https://doi.org/ 10.1016/j.eurpsy.2017.01.1914.

146 Bibliography

Al Maqbali, M., & A-Sinawi, H. (2016). Burden of care among relatives of people

with dementia attending tertiary care in Oman. European Psychiatry, 33, Article

S184. https://doi.org/10.1016/j.eurpsy.2016.01.403

Al Riyami, A. A., Al Adawi, S. H., Al Kharusi, H. A., Morsi, M. M., & Jaju, S. S.

(2009). Health services utilization by school going Omani adolescents and

youths with DSM IV mental disorders and barriers to service use. International

Journal of Mental Health Systems, 3(1), Article 22.

https://doi.org/10.1186/1752-4458-3-22

Albert, S. M. (1990). Caregiving as a cultural system: Conceptions of filial

obligation and parental dependency in urban America. American

Anthropologist, 92(2), 319-331. https://doi.org/10.1525/aa.1990.92.2.02a00040

Allen, K., Linn, R. T., Gutierrez, H., & Willer, B. S. (1994). Family burden

following traumatic brain injury. Rehabilitation Psychology, 39(1), 29-48.

https://doi.org/10.1037/h0080313

Almutairi, A. F., & McCarthy, A. (2012). A multicultural nursing workforce and

cultural perspectives in Saudi Arabia: an overview. The Health, 3(3), 71–74.

Andelic, N., Howe, E. I., Hellstrøm, T., Sanchez, M. F., Lu, J., Løvstad, M., & Røe,

C. (2018). Disability and quality of life 20 years after traumatic brain injury.

Brain and Behavior, 8(7), Article e01018. https://doi.org/10.1002/brb3.1018

Anderson, M. I., Daher, M., & Simpson, G. K. (2019). A predictive model of

resilience among family caregivers supporting relatives with traumatic brain

injury (TBI): A structural equation modelling approach. Neuropsychological

Rehabilitation, 6(1), 1-22. https://doi.org/10.1080/09602011.2019.1620787

Bibliography 147

Aranda, M. P., & Knight, B. G. (1997). The influence of ethnicity and culture on the

caregiver stress and coping process: A sociocultural review and analysis. The

Gerontologist, 37(3), 342-354. https://doi.org/10.1093/geront/37.3.342.

Arciniegas, D. B., Harris, S. N., & Brousseau, K. M. (2003). Psychosis following

traumatic brain injury. International Review of Psychiatry, 15(4), 328-340.

https://doi.org/10.1080/09540260310001606719

Asim, M., El-Menyar, A., Al-Thani, H., Abdelrahman, H., Zarour, A., & Latifi, R.

(2014). Blunt traumatic injury in the Arab Middle Eastern populations. Journal

of Emergencies, Trauma, and Shock, 7(2), 88-96. https://doi.org/10.4103/0974-

2700.130878

Australian Institute of Health & Welfare. (2004). Carers in Australia: assisting frail

older people and people with a disability (Cat No. AGE 41). Canberra:

Australian Institute of Health & Welfare.

https://www.aihw.gov.au/getmedia/7a8154f8-000b-4cea-a8d7-

ad4aafcdcf90/cia.pdf.aspx?inline=true

Awad, A. G., & Voruganti, L. N. (2008). The burden of schizophrenia on caregivers.

Pharmacoeconomics, 26(2), 149-162. https://doi.org/10.2165/00019053-

200826020-00005

Bachner, Y., & O’Rourke, N. (2007). Reliability generalization of responses by care

providers to the Zarit Burden Interview. Aging & Mental Health, 11(6), 678-

685. https://doi.org/10.1080/1360786070152996/

Baker, A., Barker, S., Sampson, A., & Martin, C. (2017). Caregiver outcomes and

interventions: a systematic scoping review of the traumatic brain injury and

https://dx.doi.org/10.4103%2F0974-2700.130878

https://dx.doi.org/10.4103%2F0974-2700.130878

https://www.aihw.gov.au/getmedia/7a8154f8-000b-4cea-a8d7-ad4aafcdcf90/cia.pdf.aspx?inline=true

https://www.aihw.gov.au/getmedia/7a8154f8-000b-4cea-a8d7-ad4aafcdcf90/cia.pdf.aspx?inline=true

148 Bibliography

spinal cord injury literature. Clinical Rehabilitation, 31(1), 45-60.

https://doi.org/10.1177/026921551663935

Barrio, C., Hernandez, M., & Gaona, L. (2016). The family caregiving context

among adults with disabilities: A review of the research on developmental

disabilities, serious mental illness, and traumatic brain injury. Journal of Family

Social Work, 19(4), 328-347. https://doi.org/10.1080/10522158.2016.1233923

Bastawrous, M. (2013). Caregiver burden—A critical discussion. International

Journal of Nursing Studies, 50(3), 431-441.

https://doi.org/10.1016/j.ijnurstu.2012.10.005

Bates, L. J., Davey, J., Watson, B., King, M. J., & Armstrong, K. (2014). Factors

contributing to crashes among young drivers. Sultan Qaboos University Medical

Journal, 14(3), 297-305.

Bay, E. H., Blow, A. J., & Yan, X. (2012). Interpersonal relatedness and

psychological functioning following traumatic brain injury: Implications for

marital and family therapists. Journal of marital and family therapy, 38(3), 556-

567. http://dx.doi.org/ 10.1111/j.1752-0606.2011.00231.x

Bayen, E., Pradat-Diehl, P., Jourdan, C., Ghout, I., Bosserelle, V., Azerad, S., Weiss,

J., Joel, M.E., Aegerter, P. & Azouvi, P. (2013). Predictors of Informal Care

Burden 1 Year After a Severe Traumatic Brain Injury: Results From the PariS-

TBI study. The Journal of Head Trauma Rehabilitation, 28(6), 408-418.

http://dx.doi.org/10.1097/HTR.0b013e31825413cf

Bayley, M. T., Tate, R., Douglas, J. M., Turkstra, L. S., Ponsford, J., Stergiou-Kita,

Bragge, P. (2014). INCOG guidelines for cognitive rehabilitation following

Bibliography 149

traumatic brain injury: methods and overview. The Journal of Head Trauma

Rehabilitation, 29(4), 290-306.

http://dx.doi.org/10.1097/HTR.0000000000000070

Bell, C. M., Araki, S. S., & Neumann, P. J. (2001). The association between

caregiver burden and caregiver health-related quality of life in Alzheimer

disease. Alzheimer Disease & Associated Disorders, 15(3), 129-136.

Bian, L. (2015). Medical individualism or medical familism? A critical analysis of

China’s new guidelines for informed consent: the basic norms of the

documentation of the medical record. Journal of Medicine and Philosophy,

40(4), 371-386. http://dx.doi.org/10.1093/jmp/jhv016

Biddle, B. J. (1986). Recent developments in role theory. Annual Review of

Sociology, 12(1), 67-92. http://dx.doi.org/10.1146/annurev.so.12.080186.000435

Bodley-Scott, S. E. M., & Riley, G. (2015). How Partners Experience Personality

Change After Traumatic Brain Injury - Its Impact on Their Emotions and their

Relationship. Brain Impairment, 16(3), 205-220.

http://dx.doi.org/10.1017/BrImp.2015.22

Bordonada, T. M., Feather, K. A., Ohrt, J. H., & Waddington, A. F. (2018).

Experiences of adults who identify as primary caregivers. Adultspan Journal,

17(1), 14-26. http://dx.doi.org/10.1002/adsp.12050

Boschen, K., Gargaro, J., Gan, C., Gerber, G., & Brandys, C. (2007). Family

interventions after acquired brain injury and other chronic conditions: a critical

appraisal of the quality of the evidence. NeuroRehabilitation, 22(1), 19-41.

150 Bibliography

Bowen, M. (2018). Family reaction to death. In P. Titelman & S.K.Reed. (Ed.),

Death and Chronic Illness in the Family (pp. 33-50). Routledge.

Braine, M. E. (2011). The experience of living with a family member with

challenging behavior post acquired brain injury. Journal of Neuroscience

Nursing, 43(3), 156-164. http://dx.doi.org/10.1097/JNN.0b013e3182135bb2

Brault, M. W. (2012). Americans with disabilities: 2010. (P70-131). United States

Department of Commerce, Economics and Statistics Administration.

http://www.includevt.org/wp-

content/uploads/2016/07/2010_Census_Disability_Data.pdf

Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2018). Thematic analysis. In

P.Liamputtong (Ed.), Handbook of Research Methods in Health Social Sciences,

1-18, Springer.

Breen, L. J., & O'Connor, M. (2011). Family and social networks after bereavement:

Experiences of support, change and isolation. Journal of Family Therapy, 33(1),

98-120. http://dx.doi.org/10.1111/j.1467-6427.2010.00495.x

Buckley, K. M., Tran, B. Q., & Prandoni, C. M. (2004). Receptiveness, use and

acceptance of telehealth by caregivers of stroke patients in the home. The Online

Journal of Issues in Nursing, 9(3).

http://ojin.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPerio

dicals/OJIN/TableofContents/Volume92004/No3Sept04/ArticlePreviousTopic/T

elehealthforStrokePatients.html

Burden, C., & Quite, N. (2000). A practical guide to caring for caregivers. American

Family Physician, 62(12), 2613-2620.

http://www.includevt.org/wp-content/uploads/2016/07/2010_Census_Disability_Data.pdf

http://www.includevt.org/wp-content/uploads/2016/07/2010_Census_Disability_Data.pdf

Bibliography 151

Butera-Prinzi, F., & Perlesz, A. (2004). Through children's eyes: children's

experience of living with a parent with an acquired brain injury. Brain Injury,

18(1), 83-101. http://dx.doi.org/ 10.1080/0269905031000118500

Calderon, V., & Tennstedt, S. L. (1998). Ethnic differences in the expression of

caregiver burden: Results of a qualitative study. Journal of Gerontological

Social Work, 30(1-2), 159-178. http://dx.doi.org/10.1300/J083v30n01_10

Caplan, B., Bogner, J., Brenner, L., Arciniegas, D., Bayen, E., Jourdan, C. & Vallat-

Azouvi, C. (2016). Objective and subjective burden of informal caregivers 4

years after a severe traumatic brain injury: results from the PariS-TBI study.

Journal of Head Trauma Rehabilitation, 31(5), E59-E67.


Caplan, B., Bogner, J., Brenner, L., Manskow, U. S., Sigurdardottir, S., Røe, C. &

Elmståhl, S. (2015). Factors affecting caregiver burden 1 year after severe

traumatic brain injury: A prospective nationwide multicenter study. Journal of

Head Trauma Rehabilitation, 30(6), 411-423.


Caplan, B., Bogner, J., Brenner, L., Powell, J. M., Fraser, R., Brockway, J. A. &

Bell, K. R. (2016). A telehealth approach to caregiver self-management

following traumatic brain injury: a randomized controlled trial. Journal of Head

Trauma Rehabilitation, 31(3), 180-190.


Carlozzi, N. E., Kratz, A. L., Sander, A. M., Chiaravalloti, N. D., Brickell, T. A.,

Lange, R. T. & Tulsky, D. S. (2015). Health-related quality of life in caregivers

of individuals with traumatic brain injury: development of a conceptual model.

152 Bibliography

Archives of physical medicine and rehabilitation, 96(1), 105-113.

http://dx.doi.org/10.1016/j.apmr.2018.05.020

Carnes, S. L., & Quinn, W. H. (2005). Family Adaptation to Brain Injury: Coping

and Psychological Distress. Families, Systems, & Health, 23(2), 186-203.

http://dx.doi.org/10.1037/1091-7527.23.2.186

Cavallo, M. M., & Kay, T. (2005). The family system. In J. M. Silver, T. W.

McAllister, & S. C. Yudofsky (Eds.), Textbook of traumatic brain injury (pp

533-558). American Psychiatric Publishing, Inc.

Chamsi-Pasha, H., & Albar, M. A. (2016). Doctor-patient relationship: Islamic

perspective. Saudi Medical Journal, 37(2), 121-126.

http://dx.doi.org/10.15537/smj.2016.2.13602

Chang, H.-Y., Chiou, C.-J., & Chen, N.-S. (2010). Impact of mental health and

caregiver burden on family caregivers’ physical health. Archives of Gerontology

and Geriatrics, 50(3), 267-271. http://dx.doi.org/10.1016/j.archger.2009.04.006

Chelly, H., Chaari, A., Daoud, E., Dammak, H., Medhioub, F., Mnif, J., Hamida,

C.B, Bahloul, M. & Bouaziz, M. (2011). Diffuse axonal injury in patients with

head injuries: an epidemiologic and prognosis study of 124 cases. Journal of

Trauma and Acute Care Surgery, 71(4), 838-846.

http://dx.doi.org/10.1097/TA.0b013e3182127baa

Chesnut, R. M., Temkin, N., Carney, N., Dikmen, S., Rondina, C., Videtta, W.,

Petroni, G., Lujan, S., Pridgeon, J., Machamer, J., Chaddock, K., Celix, J.M.,

Cherner, M., Hendrix, T. & Barber, J. (2012). A trial of intracranial-pressure

Bibliography 153

monitoring in traumatic brain injury. New England Journal of Medicine,

367(26), 2471-2481. http://dx.doi.org/10.1056/NEJMoa1207363

Chitme, H. R., Al Kashmiri, A., Al Amri, F. M., Haidar, A. K., Al Ajmi, A. M., Al

Saiari, Y. A., & Al Mahri, L. S. (2017). Assessment of Type and Severity of

Road Traffic Accident Injuries among Omani Young Adults, Saudi Journal of

Medical and Pharmaceutical Sciences, 3(10), 60-68.

http://dx.doi.org/10.21276/sjmps.2017.3.10

Chou, K.-R., LaMontagne, L. L., & Hepworth, J. T. (1999). Burden experienced by

caregivers of relatives with dementia in Taiwan. Nursing Research, 48(4), 206-

214.

Christensen, J. (2012). Traumatic brain injury: risks of epilepsy and implications for

medicolegal assessment. Epilepsia, 53, 43-47. http://dx.doi.org/10.1111/j.1528-

1167.2012.03612.x

Coco, K., Tossavainen, K., Jääskeläinen, J. E., & Turunen, H. (2011). Support for

traumatic brain injury patients’ family members in neurosurgical nursing: A

systematic review. Journal of Neuroscience Nursing, 43(6), 337-348.

http://dx.doi.org/10.1097/JNN.0b013e318234ea0b

Colantonio, A., Salehi, S., Kristman, V., Cassidy, J. D., Carter, A., Vartanian, O.,

Bayley, M., Kirsh, B., Hebert, D., Kubrak,O., Mantis, S., Vernich, L. &

Haarbauer-Krupa, Juliet & Lewko, J. (2016). Return to work after work-related

traumatic brain injury. NeuroRehabilitation, 39(3), 389-399.

http://dx.doi.org/10.3233/NRE-161370

154 Bibliography

Corallo, F., Bonanno, L., Buono, V. L., De Salvo, S., Rifici, C., Bramanti, A., &

Marino, S. (2018). Coping strategies in caregivers of disorders of consciousness

patients. Neurological Sciences, 39(8), 1375-1381.

http://dx.doi.org/10.1007/s10072-018-3431-1

Corallo, F., Bonanno, L., Formica, C., Corallo, F., De Salvo, S., Buono, V. L., Di

Cara, M., Alagna, A., Rifici, C., Bramanti, P. & Marino, S. (2019). Religious

coping in caregiver of patients with acquired brain injuries. Journal of Religion

and Health, 58 (4), 1444-1452. http://dx.doi.org/10.1007/s10943-019-00840-8

Creswell, J. W. (2013). Research Design: Qualitative, Quantitative, and Mixed

Methods Approaches. Sage Publications.

Creswell, J. W., Plano Clark, V. L., Gutmann, M. L., & Hanson, W. E. (2003).

Advanced mixed methods research designs. In A.Tashakkori & C.Teddlie

(Eds.), Handbook of Mixed Methods in Social and Behavioral Research, 209-

240. Thousand Oaks, CA Sage.

Dahm, J., & Ponsford, J. (2015). Long-term employment outcomes following

traumatic brain injury and orthopaedic trauma: a ten-year prospective study.

Journal of Rehabilitation Medicine, 47(10), 932-940.

http://dx.doi.org/10.2340/16501977-2016

Dalky, H. F., Qandil, A. M., Natour, A. S., & Janet, M. C. (2017). Quality of life,

stigma and burden perception among family caregivers and patients with

psychiatric illnesses in Jordan. Community Mental Health Journal, 53(3), 266-

274. http://dx.doi.org/10.1007/s10597-016-0028-0

Bibliography 155

Daradkeh, G. A. (2016). Screening The Status Of Nutritional, Biochemical And

Behavioural Profile In Traumatic Brain Injury Patients Of Oman. (Doctoral

dissertation, Sultan Qaboos University, Oman). Retrieved from

https://www.researchgate.net/profile/ghazi_daradkeh/publication/323167672_sc

reening_the_status_of_nutritional_biochemical_and_behavioural_profile_in_tra

umatic_brain_injury_pstients_of_oman/links/5a8412ec0f7e9bda86a505a0/scree

ning-the-status-of-nutritional-biochemical-and-behavioural-profile-in-traumatic-

brain-injury-pstients-of-oman.pdf

Dauphinot, V., Ravier, A., Novais, T., Delphin-Combe, F., Moutet, C., Xie, J.,

Mouchoux, C. & Krolak-Salmon, P. (2016). Relationship between comorbidities

in patients with cognitive complaint and caregiver burden: a cross-sectional

study. Journal of the American Medical Directors Association, 17(3), 232-237.

http://dx.doi.org/10.1016/j.jamda.2015.10.011

Dawodu, S., & Campagnolo, D. (2015). Traumatic Brain Injury (TBI)—Definition.

Epidemiology, Pathophysiology. Medscape.Retrieved on November 18, 2018

from http://emedicine. medscape. com/article/326510-overview.

de Guise, E., Alturki, A. Y., LeBlanc, J., Champoux, M.-C., Couturier, C.,

Lamoureux, J., Desjardins, M., Marcoux, J., Maleki, M. & Feyz, M. (2014). The

Montreal Cognitive Assessment in Persons with Traumatic Brain Injury.

Applied Neuropsychology: Adult, 21(2), 128-135.

http://dx.doi.org/10.1080/09084282.2013.778260

Degeneffe, C. E. (2019). The Phenomenological Experience of Family Caregiving

following Traumatic Brain Injury. In C.M. Hayre & D.J. Muller (Eds.),

https://www.researchgate.net/profile/Ghazi_Daradkeh/publication/323167672_SCREENING_THE_STATUS_OF_NUTRITIONAL_BIOCHEMICAL_AND_BEHAVIOURAL_PROFILE_IN_TRAUMATIC_BRAIN_INJURY_PSTIENTS_OF_OMAN/links/5a8412ec0f7e9bda86a505a0/SCREENING-THE-STATUS-OF-NUTRITIONAL-BIOCHEMICAL-AND-BEHAVIOURAL-PROFILE-IN-TRAUMATIC-BRAIN-INJURY-PSTIENTS-OF-OMAN.pdf





156 Bibliography

Enhancing Healthcare and Rehabilitation: The Impact of Qualitative Research,

65-78. Taylor & Francis Group

Degeneffe, C. E., & Olney, M. F. (2008). Future concerns of adult siblings of

persons with traumatic brain injury. Rehabilitation Counseling Bulletin, 51(4),

240-250. http://dx.doi.org/10.1177/0034355207311319.

Degeneffe, C. E., & Olney, M. F. (2010). ‘We are the forgotten victims’:

Perspectives of adult siblings of persons with traumatic brain injury. Brain

Injury, 24(12), 1416-1427. http://dx.doi.org/10.3109/02699052.2010.514317

Dilworth-Anderson, P., Williams, S. W., & Cooper, T. (1999). Family caregiving to

elderly African Americans: Caregiver types and structures. The Journals of

Gerontology Series B: Psychological Sciences and Social Sciences, 54(4), S237-

S241. http://dx.doi.org/10.1093/geronb/54B.4.S237

Downing, M., & Ponsford, J. (2016). Family caregiving of individuals with traumatic

brain injury in Botswana.

Doyle, S. T., Perrin, P. B., Díaz Sosa, D. M., Espinosa Jove, I. G., Lee, G. K., &

Arango-Lasprilla, J. C. (2013). Connecting family needs and TBI caregiver

mental health in Mexico City, Mexico. Brain Injury, 27(12), 1441-1449.

http://dx.doi.org/10.3109/02699052.2013.826505

Durber, C. M., Yeates, K. O., Taylor, H. G., Walz, N. C., Stancin, T., & Wade, S. L.

(2017). The family environment predicts long-term academic achievement and

classroom behavior following traumatic brain injury in early childhood.

Neuropsychology, 31(5), 499-507. http://dx.doi.org/10.1037/neu0000351

Bibliography 157

Elbaum, J. (2019). Acquired brain injury and the family: Challenges and

interventions. In J. Elabaum (Ed.), Acquired Brain Injury. (pp. 335-347).

Springer. https://doi-org.ezp01.library.qut.edu.au/10.1007/978-3-030-16613-7_13

El-Menyar, A., Mekkodathil, A., Al-Thani, H., Consunji, R., & Latifi, R. (2017).

Incidence, Demographics, and Outcome of Traumatic Brain Injury in The

Middle East: A Systematic Review. World neurosurgery, 107, 6-21.

Elmahdi, M., Kamel, F., Esmael, A., Lotfi, M., Kamel, A., & Elhosini, A. (2011).

Burden of care on female caregivers and its relation to psychiatric morbidity.

Middle East Current Psychiatry, 18(2), 65-71.

http://dx.doi.org/10.1097/01.XME.0000395557.32827.b4

Elmore, D. L. (2014). The Impact of Caregiving on Physical and Mental Health:

Implications for Research, Practice, Education, and Policy. In R. C. Talley, G.

L. Fricchione, & B. G. Druss (Eds.), The Challenges of Mental Health

Caregiving: Research, Practice, Policy (pp. 15-31). Springer.

https://doi.org/10.1007/978-1-4614-8791-3_2

English, S. W., Turgeon, A. F., Owen, E., Doucette, S., Pagliarello, G., & McIntyre,

L. (2013). Protocol management of severe traumatic brain injury in intensive

care units: a systematic review. Neurocritical Care, 18(1), 131-142.

https://doi.org/10.1007/s12028-012-9748-3

Ennis, N., Rosenbloom, B. N., Canzian, S., & Topolovec-Vranic, J. (2013).

Depression and anxiety in parent versus spouse caregivers of adult patients with

traumatic brain injury: a systematic review. Neuropsychological Rehabilitation,

23(1), 1-18. https://doi.org/10 .1080/09602011.2012.712871

158 Bibliography

Ergh, T. C., Hanks, R. A., Rapport, L. J., & Coleman, R. D. (2003). Social Support

Moderates Caregiver Life Satisfaction Following Traumatic Brain Injury.

Journal of Clinical And Experimental Neuropsychology. 25(8), 1090-1101.

https://doi.org/10.1076/jcen.25.8.1090.16735

Ergh, T. C., Rapport, L. J., Coleman, R. D., & Hanks, R. A. (2002). Predictors of

caregiver and family functioning following traumatic brain injury: Social

support moderates caregiver distress. The Journal of Head Trauma


Evans, L. D. (2012). Caregiver burden in brain injury populations: An exploratory

study. (Doctoral dissertation, Spalding University, Kentucky) Retrieved from

https://search.proquest.com/openview/64ddb0730822f74cf76168124d103d99/1?

pq-origsite=gscholar&cbl=18750&diss=y

Fann, J. R., Burington, B., Leonetti, A., Jaffe, K., Katon, W. J., & Thompson, R. S.

(2004). Psychiatric Illness Following Traumatic Brain Injury In An Adult Health

Maintenance Organization Population. Archives of General Psychiatry, 61(1),

53-61. https://doi.org/10.1001/archpsyc.61.1.53

Faul, M., Wald, M. M., Rutland-Brown, W., Sullivent, E. E., & Sattin, R. W. (2007).

Using a cost-benefit analysis to estimate outcomes of a clinical treatment

guideline: testing the Brain Trauma Foundation guidelines for the treatment of

severe traumatic brain injury. Journal of Trauma and Acute Care Surgery,

63(6), 1271-1278. https://doi.org/10.1097/TA.0b013e3181493080

Feigin, V. L., Theadom, A., Barker-Collo, S., Starkey, N. J., McPherson, K., Kahan,

M., Dowell, A., Brown, P., Parag, V., Kydd, R., Jones, K., Jones, A. &

Ameratunga, S. (2013). Incidence of traumatic brain injury in New Zealand: a

https://search.proquest.com/openview/64ddb0730822f74cf76168124d103d99/1?pq-origsite=gscholar&cbl=18750&diss=y

https://search.proquest.com/openview/64ddb0730822f74cf76168124d103d99/1?pq-origsite=gscholar&cbl=18750&diss=y

Bibliography 159

population-based study. The Lancet Neurology, 12(1), 53-64.

https://doi.org/10.1016/S1474-4422(12)70262-4

Finkelstein, E., Corso, P. S., & Miller, T. R. (2006). The Incidence and Economic

Burden of Injuries in the United States. Oxford University Press.

Fleming, D. A., Sheppard, V. B., Mangan, P. A., Taylor, K. L., Tallarico, M.,

Adams, I., & Ingham, J. (2006). Caregiving at the end of life: Perceptions of

health care quality and quality of life among patients and caregivers. Journal of

Pain and Symptom Management, 31(5), 407-420.

https://doi.org/10.1016/j.jpainsymman.2005.09.002

Fleminger, S. (2003). Head injury as a risk factor for Alzheimer's disease.(BNPA

Abstracts: Recovering From Head Injury). Journal of Neurology, Neurosurgery

and Psychiatry, 74(6), 832-833.

Franzén, C., Björnstig, U., & Jansson, L. (2006). Injured in traffic: experiences of

care and rehabilitation. Accident and Emergency Nursing, 14(2), 104-110.

https://doi.org/10.1016/j.aaen.2006.01.003

Friedemann, M.-L., & Buckwalter, K. C. (2014). Family caregiver role and burden

related to gender and family relationships. Journal of Family Nursing, 20(3),

313-336. https://doi.org/10.1177/1074840714532715

Gagnon, A., Lin, J., & Stergiou-Kita, M. (2016). Family members facilitating

community re-integration and return to productivity following traumatic brain

injury–motivations, roles and challenges. Disability and Rehabilitation, 38(5),

433-441. https://doi.org/10.3109/09638288.2015.104403

160 Bibliography

Gan, C., Gargaro, J., Brandys, C., Gerber, G., & Boschen, K. (2010). Family

caregivers' support needs after brain injury: A synthesis of perspectives from

caregivers, programs, and researchers. NeuroRehabilitation, 27(1), 5-18.

https://doi.org/10.3233/NRE-2010-0577

Gardner, R. C., Burke, J. F., Nettiksimmons, J., Goldman, S., Tanner, C. M., &

Yaffe, K. (2015). Traumatic brain injury in later life increases risk for Parkinson

disease. Annals of Neurology, 77(6), 987-995. https://doi.org/10.1002/ana.24396

Gennarelli, T. A., Thibault, L. E., Adams, J. H., Graham, D. I., Thompson, C. J., &

Marcincin, R. P. (1982). Diffuse axonal injury and traumatic coma in the

primate. Annals of Neurology: Official Journal of the American Neurological

Association and the Child Neurology Society, 12(6), 564-574.

George, L. K., & Gwyther, L. P. (1986). Caregiver weil-being: a multidimensional

examination of family caregivers of demented adults. The Gerontologist, 26(3),

253-259. https://doi.org/10.1093/geront/26.3.253

Global Peace Index. (2017). Global Peace Index and Institute for Economics and

Peace. URL: http://visionofhumanity.org/app/uploads/2017/06/GPI-2017-

Report-1.pdf

Gould, K., Ponsford, J., Johnston, L., & Schönberger, M. (2011). The nature,

frequency and course of psychiatric disorders in the first year after traumatic

brain injury: a prospective study. Psychological Medicine, 41(10), 2099-2109.

https://doi.org/10.1017/S003329171100033X

http://visionofhumanity.org/app/uploads/2017/06/GPI-2017-Report-1.pdf

http://visionofhumanity.org/app/uploads/2017/06/GPI-2017-Report-1.pdf

Bibliography 161

Goveas, S., & Aslam, N., (2011). A Role and Contributions of Women in the

Sultanate of Oman. International Journal of Business and Management,, 6(3),

232-239.

Greene, J. C., & Caracelli, V. J. (1997). Advances in mixed-method evaluation: The

challenges and benefits of integrating diverse paradigms. Jossey-Bass

Publishers.

Gustavsson, A., Svensson, M., Jacobi, F., Allgulander, C., Alonso, J., Beghi, E.,

Dodel, R., Ekman, M., Faravelli, C., Fratiglioni, L., Gannon, B., Jones, David

H., Jennum, P., Jordanova, A., Jönsson, L., Karampampa, K., Knapp, M.,

Kobelt, G., Kurth, T. & Lieb, R.(2011). Cost of disorders of the brain in Europe

2010. European Neuropsychopharmacology, 21(10), 718-779.

https://doi.org/10.1016/j.euroneuro.2011.08.008

Hale, A. C., Bohnert, K. M., Grekin, R., & Sripada, R. K. (2019). Traumatic brain

injury in the general population: incidence, mental health comorbidity, and

functional impact. The Journal of nervous and mental disease, 207(1), 38-42.

Hamid, A., & Furnham, A. (2013). Factors affecting attitude towards seeking

professional help for mental illness: A UK Arab perspective. Mental Health,

Religion & Culture, 16(7), 741-758.

https://doi.org/10.1080/13674676.2012.718753

Hamilton, B. B. (1987). A uniform national data system for medical rehabilitation.

Rehabilitation Outcomes: Analysis and Measurement, 137-147.

Hammond, F. M., Davis, C. S., Whiteside, O. Y., Philbrick, P., & Hirsch, M. A.

(2011). Marital adjustment and stability following traumatic brain injury: a pilot

162 Bibliography

qualitative analysis of spouse perspectives. The Journal of Head Trauma

Rehabilitation, 26(1), 69-78. https://doi.org/10.1097/HTR.0b013e318205174d

Hanson, K. T., Carlson, K., Friedemann-Sanchez, G., Meis, L., Van Houtven,

Courtney H., Jensen, C., Phelan, M., Griffin, J.M. & Shilling, V.(2019). Family

caregiver satisfaction with inpatient rehabilitation care. PLoS one, 14(3), Article

e0213767. https://doi.org/10.1371/journal.pone.0213767

Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J., & Higginson, I. J. (2015).

Comparative analysis of informal caregiver burden in advanced cancer,

dementia, and acquired brain injury. Journal of Pain and Symptom

Management, 50(4), 445-452.

https://doi.org/10.1016/j.jpainsymman.2015.04.005

Harrison, DA, Prabhu, G, Grieve, R., Harvey, S.E., Sadique, MZ, Gomes, M.,

Griggs, K.A. Walmsley, E., Smith, M., Yeoman, P., Lecky, F.E., Hutchinson,

P.J.A., Menon, D & Rowan, K.M. (2013). Risk Adjustment In Neurocritical

care (RAIN)-prospective validation of risk prediction models for adult patients

with acute traumatic brain injury to use to evaluate the optimum location and

comparative costs of neurocritical care: a cohort study. Health Technology

Assessment, 17(23), Article 1. https://doi.org/10.3310/hta17230

Hart, T., Hoffman, J. M., Pretz, C., Kennedy, R., Clark, A. N., & Brenner, L. A.

(2012). A longitudinal study of major and minor depression following traumatic

brain injury. Archives of Physical Medicine and Rehabilitation, 93(8), 1343-

1349. https://doi.org/10.1016/j.apmr.2012.03.036

Hayre, C. M., & Muller, D. J. (2019). Enhancing Healthcare and Rehabilitation: The

Impact of Qualitative Research. CRC Press.

Bibliography 163

Hébert, R., Bravo, G., & Préville, M. (2000). Reliability, validity and reference

values of the Zarit Burden Interview for assessing informal caregivers of

community-dwelling older persons with dementia. Canadian Journal on

Aging/La Revue canadienne du vieillissement, 19(4), 494-507.

https://doi.org/10.1017/S0714980800012484

Hodges, R. (2015). Negotiating Culture and Care: Challenges and Opportunities in

Mental Health and Reproductive Health Care in the Sultanate of Oman.

(Master's dissertation, University of Oregon, Oregon) Retrieved from

https://scholarsbank.uoregon.edu/xmlui/bitstream/handle/1794/19329/Hodges_o

regon_0171N_11354.pdf?sequence=1

Hoerger, M., & Cullen, B. D. (2017). Early integrated palliative care and reduced

emotional distress in cancer caregivers: reaching the “hidden patients”. The

Oncologist, 22(12), 1419-1420. https://doi.org/10.1634/theoncologist.2017-0432

Horowitz, A. (1984). Family caregiving to the frail elderly. Annual Review of

Gerontology & Geriatrics, 5, 194-246. https://doi.org/10.1891/0198-

8794.5.1.194

Horwitz, A. V., & Reinhard, S. C. (1995). Ethnic Differences in Caregiving Duties

and Burdens Among Parents and Siblings of Persons with Severe Mental

Illnesses. Journal of Health and Social Behavior, 36(2), 138-150.

https://doi.org/10.2307/2137221

Hudson, P. L., Lobb, E. A., Thomas, K., Zordan, R. D., Trauer, T., Quinn, K.,

Williams, A. & Summers, M. (2012). Psycho-educational group intervention for

family caregivers of hospitalized palliative care patients: pilot study. Journal of

Palliative Medicine, 15(3), 277-281. https://doi.org/10.1089/jpm.2011.0347

https://scholarsbank.uoregon.edu/xmlui/bitstream/handle/1794/19329/Hodges_oregon_0171N_11354.pdf?sequence=1

https://scholarsbank.uoregon.edu/xmlui/bitstream/handle/1794/19329/Hodges_oregon_0171N_11354.pdf?sequence=1

164 Bibliography

Hunt, C. K. (2003). Concepts in caregiver research. Journal of Nursing Scholarship,

35(1), 27-32. https://doi.org/10.1111/j.1547-5069.2003.00027.x

Hussein, R. A., Elsayed, H., & Elsaied, H. F. (2015). Challenging Behavior and

Psychiatric Symptoms among Adults with Intellectual Disability:

Epidemiological Aspects and Family Burden.= التحدیات السلوكية و األعراض النفسية

The Arab .لدى الكبار الذین یعانون من اإلعاقة الذهنية: جوانب دیموغرافية و العبء العائلي

Journal of Psychiatry, 44(2151), 145-154. https://doi.org/10.12816/0014481

Islam, F., & Campbell, R. A. (2014). “Satan has afflicted me!” Jinn-possession and

mental illness in the Qur’an. Journal of Religion and Health, 53(1), 229-243.

https://doi.org/10.1007/s10943-012-9626-5

Islam, M. M., & Al Hadhrami, A. Y. (2012). Increased motorization and road traffic

accidents in Oman. Journal of Emerging Trends in Economics and Management

Sciences, 3(6), 907-914.

Iwata, N., & Horiguchi, K. (2016). Differences In Caregivers' Psychological Distress

And Associated Factors By Care Recipients' Gender And Kinship. Aging &

Mental Health, 20(12), 1277-1285.

https://doi.org/10.1080/13607863.2015.1074161

Jourdan, C., Bayen, E., Bosserelle, V., Azerad, S., Genet, F., Fermanian, C.,

Aegerter, P., Pradat-Diehl, P., Weiss, J-J. & Azouvi, P. (2013). Referral to

rehabilitation after severe traumatic brain injury: results from the PariS-TBI

Study. Neurorehabilitation and Neural Repair, 27(1), 35-44.

https://doi.org/10.1177/1545968312440744

Bibliography 165

Jourdan, C., Bayen, E., Pradat-Diehl, P., Ghout, I., Darnoux, E., Azerad, S., Vallat-

Azouvi, C., Charanton, J., Aegerter, P., Ruet, A. & Azouvi, P. (2016). A

comprehensive picture of 4-year outcome of severe brain injuries. Results from

the PariS-TBI study. Annals of Physical and Rehabilitation Medicine, 59(2),

100-106. https://doi.org/10.1016/j.rehab.2015.10.009

Jourdan, C., Bosserelle, V., Azerad, S., Ghout, I., Bayen, E., Aegerter, P., Weiss, J.J.,

Mateo, J., Lescot, T., Tazarourte, K, Azouvi, P. & Vigue, B. (2013). Predictive

factors for 1-year outcome of a cohort of patients with severe traumatic brain

injury (TBI): results from the PariS-TBI study. Brain Injury, 27(9), 1000-1007.

https://doi.org/10.3109/02699052.2013.794971

Julayanont, P., & Nasreddine, Z. S. (2017). Montreal Cognitive Assessment

(MoCA): concept and clinical review, in A.J. Larner (Ed.), Cognitive screening

instruments. (pp. 111-152). Springer.

Jumisko, E., Lexell, J., & Söderberg, S. (2007). Living with moderate or severe

traumatic brain injury: the meaning of family members' experiences. Journal of

Family Nursing, 13(3), 353-369. https://doi.org/10.1177/1074840707303842

Juntunen, K., Salminen, A. L., Törmäkangas, T., Tillman, P., Leinonen, K., &

Nikander, R. (2018). Perceived burden among spouse, adult child, and parent

caregivers. Journal of Advanced Nursing, 74(10), 2340-2350.

https://doi.org/10.1111/jan.13733

Kaizik, C., Caga, J., Camino, J., O’Connor, C. M., McKinnon, C., Oyebode, J. R., . .

. Mioshi, E. (2017). Factors underpinning caregiver burden in frontotemporal

dementia differ in spouses and their children. Journal of Alzheimer's Disease,

56(3), 1109-1117. https://doi.org/10.3233/JAD-160852

166 Bibliography

Kamel, A. A. (2016). ‘There is a dependent patient in our home’: designing and

disseminating a family caregiving program through YouTube. The Journal Of

The Egyptian Public Health Association, 91(2), 95-99.

https://doi.org/10.1097/01.EPX.0000482111.88197.5a

Kanmani, T. R., Thimmappur, R. M., Birudu, R., Reddy, K., & Raj, P. (2019).

Burden and psychological distress of intensive care unit caregivers of traumatic

brain injury patients. Indian journal of critical care medicine: peer-reviewed,

official publication of Indian Society of Critical Care Medicine, 23(5), 220-223.

https://doi.org/10.5005/jp-journals-10071-23164

Karthikeyan, Y., Purohit, D., & Sinha, V. D. (2017). Role of Magnetic Resonance

Imaging in Unconscious Patients due to Diffuse Axonal Injury and Its

Prognostic Value. Indian Journal of Neurotrauma, 14(01), 015-020.

Keith, R., Granger, C., Hamilton, B., & Sherwin, F. (1987). The functional

independence measure. Advances in Clinical Rehabilitation, 1, 6-18.

Ketzeback, T. J. (2012). Stress and loss experiences of families of survivors of

traumatic brain injury. (Clinical Research Paper, St. Catherine University,

California) Retrieved from

https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1117&context=msw_paper

s

Khan, F., Amatya, B., & Hoffman, K. (2012). Systematic review of multidisciplinary

rehabilitation in patients with multiple trauma. British Journal of Surgery,

99(S1), 88-96. https://doi.org/10.1002/bjs.7776

https://dx.doi.org/10.5005%2Fjp-journals-10071-23164

https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1117&context=msw_papers

https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1117&context=msw_papers

Bibliography 167

Kim, J.-H., & Knight, B. G. (2008). Effects of caregiver status, coping styles, and

social support on the physical health of Korean American caregivers. The

Gerontologist, 48(3), 287-299. https://doi.org/10.1093/geront/48.3.287

Kim, J.-H., Knight, B. G., & Longmire, C. V. F. (2007). The role of familism in

stress and coping processes among African American and White dementia

caregivers: Effects on mental and physical health. Health Psychology, 26(5),

564-576. https://doi.org/10.1037/0278-6133.26.5.564

Kipp, W., Tindyebwa, D., Rubaale, T., Karamagi, E., & Bajenja, E. (2007). Family

caregivers in rural Uganda: the hidden reality. Health Care for Women

International, 28(10), 856-871. https://doi.org/10.1080/07399330701615275

Kitter, B., & Sharman, R. (2015). Caregivers’ support needs and factors promoting

resiliency after brain injury. Brain Injury, 29(9), 1082-1093.

https://doi.org/10.3109/02699052.2015.1018323

Knight, B. G., Robinson, G. S., Longmire, C. V. F., Chun, M., Nakao, K., & Kim, J.

H. (2002). Cross cultural issues in caregiving for persons with dementia: Do

familism values reduce burden and distress? Ageing International, 27(3), 70-94.

https://doi.org/10.1007/s12126-003-1003-y

Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated

sociocultural stress and coping model. The Journals of Gerontology: Series B,

65(1), 5-13. https://doi.org/10.1093/geronb/gbp096

Knox, L., Douglas, J. M., & Bigby, C. (2015). ‘The biggest thing is trying to live for

two people’: Spousal experiences of supporting decision-making participation

168 Bibliography

for partners with TBI. Brain Injury, 29(6), 745-757.

https://doi.org/10.3109/02699052.2015.1004753

Knox, L., Douglas, J. M., & Bigby, C. (2016). “I won't be around forever”:

Understanding the decision-making experiences of adults with severe TBI and

their parents. Neuropsychological Rehabilitation, 26(2), 236-260.

https://doi.org/10.1080/09602011.2015.1019519

Koenig, H. G., Nelson, B., Shaw, S. F., Saxena, S., & Cohen, H. J. (2016). Religious

involvement and telomere length in women family caregivers. The Journal of

Nervous and Mental Disease, 204(1), 36-42.

https://doi.org/10.1097/NMD.0000000000000443

Konrad, C., Geburek, A. J., Rist, F., Blumenroth, H., Fischer, B., Husstedt, I., . . .

Lohmann, H. (2011). Long-term cognitive and emotional consequences of mild

traumatic brain injury. Psychological Medicine, 41(6), 1197-1211.

https://doi.org/10.1017/S0033291710001728

Kratz, A. L., Sander, A. M., Brickell, T. A., Lange, R. T., & Carlozzi, N. E. (2017).

Traumatic brain injury caregivers: a qualitative analysis of spouse and parent

perspectives on quality of life. Neuropsychological Rehabilitation, 27(1), 16-37.

https://doi.org/10.1080/09602011.2015.1051056

Kreutzer, J., Godwin, E., & Marwitz, J. (2010). The truth about divorce after brain

injury. Challenge, A1-A4.

Kreutzer, J. S., Gan, C., & Marwitz, J. H. (2017). Neurobehavioural Disorders and

the Family. In McMillian, T.M & Wood, R.L. (Eds.), Neurobehavioural

Bibliography 169

Disability and Social Handicap Following Traumatic Brain Injury (pp. 69-83).

Psychology Press.

Kreutzer, J. S., Livingston, L. A., Everley, R. S., Gary, K. W., Arango-Lasprilla, J.

C., Powell, V. D., & Marwitz, J. H. (2009). Caregivers' concerns about

judgment and safety of patients with brain injury: a preliminary investigation.

Physical Medicine & Rehabilitation, 1(8), 723-728.

https://doi.org/10.1016/j.pmrj.2009.07.005

Kreutzer, J. S., Marwitz, J. H., Sima, A. P., & Godwin, E. E. (2015). Efficacy of the

brain injury family intervention: Impact on family members. The Journal of

Head Trauma Rehabilitation, 30(4), 249-260.

https://doi.org/10.1097/HTR.0000000000000144

Kreutzer, J. S., Mills, A., & Marwitz, J. H. (2016). Ambiguous loss and emotional

recovery after traumatic brain injury. Journal of Family Theory & Review, 8(3),

386-397. https://doi.org/

Kreutzer, J. S., Serio, C. D., & Bergquist, S. (1994). Family needs after brain injury:

A quantitative analysis. The Journal of Head Trauma Rehabilitation, 8(3), 386-

397. https://doi.org/10.1111/jftr.12150

Kreutzer, J. S., Stejskal, T. M., Godwin, E. E., Powell, V. D., & Arango-Lasprilla, J.

C. (2010). A mixed methods evaluation of the Brain Injury Family Intervention.

NeuroRehabilitation, 27(1), 19-29. https://doi.org/10.3233/NRE-2010-0578

Kristjanson, L. J., & Aoun, S. (2004). Palliative care for families: remembering the

hidden patients. The Canadian Journal of Psychiatry, 49(6), 359-365.

https://doi.org/ 10.1177/070674370404900604

170 Bibliography

Kurowski, B. G., Taylor, H. G., Yeates, K. O., Walz, N. C., Stancin, T., & Wade, S.

L. (2011). Caregiver ratings of long-term executive dysfunction and attention

problems after early childhood traumatic brain injury: family functioning is

important. Physical Medicine & Rehabilitation, 3(9), 836-845.


Lai, D. W. (2010). Filial piety, caregiving appraisal, and caregiving burden.

Research on Aging, 32(2), 200-223. https://doi.org/10.1177/0164027509351475

Landrine, H. (1992). Clinical implications of cultural differences: The referential

versus the indexical self. Clinical Psychology Review, 12(4), 401-415.

https://doi.org/10.1016/0272-7358(92)90124-Q

Lauterbach, M. D., Notarangelo, P. L., Nichols, S. J., Lane, K. S., & Koliatsos, V. E.

(2015). Diagnostic and treatment challenges in traumatic brain injury patients

with severe neuropsychiatric symptoms: insights into psychiatric practice.

Neuropsychiatric Disease and Treatment, 11, 1601-1607.

https://doi.org/10.2147/NDT.S80457

Lavelle, B., Mancuso, D., Huber, A., & Felver, B. E. (2011). Expanding eligibility

for the family caregiver support program in SFY 2012: Updated findings.

Department of Social and Health Services, Research and Data Analysis

Division. http://leg.wa.gov/JointCommittees/ADJLEC/Documents/2014-05-

19/Expanding_Eligibility_FCS_Report.pdf

Lee, Y., & Tang, F. (2015). More caregiving, less working: Caregiving roles and

gender difference. Journal of Applied Gerontology, 34(4), 465-483.

https://doi.org/Lefebvre, H., Cloutier, G., & Josée Levert, M. (2008).

Perspectives of survivors of traumatic brain injury and their caregivers on long-

http://leg.wa.gov/JointCommittees/ADJLEC/Documents/2014-05-19/Expanding_Eligibility_FCS_Report.pdf

http://leg.wa.gov/JointCommittees/ADJLEC/Documents/2014-05-19/Expanding_Eligibility_FCS_Report.pdf

Bibliography 171

term social integration. Brain Injury, 22(7-8), 535-543.

https://doi.org/10.1177/0733464813508649

Lefebvre, H., & Levert, M.-J. (2012). The close relatives of people who have had a

traumatic brain injury and their special needs. Brain Injury, 26(9), 1084-1097.

https://doi.org/10.3109/02699052.2012.666364

Lehan, T., Arango-Lasprilla, J. C., de los Reyes, C. J., & Quijanod, M. C. (2012).

The ties that bind: The relationship between caregiver burden and the

neuropsychological functioning of TBI survivors. NeuroRehabilitation, 30(1),

87-95. https://doi.org/10.3233/NRE-2011-0730

Lezak, M. D. (1978). Living with the characterologically altered brain injured

patient. The Journal of clinical psychiatry, 39(7), 592-598.

Lezak, M. D. (1986). Psychological implications of traumatic brain damage for the

patient's family. Rehabilitation Psychology, 31(4), 241-250.

https://doi.org/10.1037/h0091551

Lezak, M. D. (1988). Brain damage is a family affair. Journal of Clinical and

Experimental Neuropsychology, 10(1), 111-123.

https://doi.org/10.1080/01688638808405098

Li, L. M., Kolias, A. G., Guilfoyle, M. R., Timofeev, I., Corteen, E. A., Pickard, J.

D., Menon, D.K, Kirkpatrick, P.J. & Hutchinson, P. J. (2012). Outcome

following evacuation of acute subdural haematomas: a comparison of

craniotomy with decompressive craniectomy. Acta neurochirurgica, 154(9),

1555-1561. https://doi.org/10.1007/s00701-012-1428-8

172 Bibliography

Liang, X., Guo, Q., Luo, J., Li, F., Ding, D., Zhao, Q., & Hong, Z. (2016). Anxiety

and depression symptoms among caregivers of care-recipients with subjective

cognitive decline and cognitive impairment. BMC neurology, 16(1), Article 191.

https://doi.org/10.1186/s12883-016-0712-2

Liao, C.-C., Chou, Y.-C., Yeh, C.-C., Hu, C.-J., Chiu, W.-T., & Chen, T.-L. (2014).

Stroke risk and outcomes in patients with traumatic brain injury: Two

nationwide studies. Mayo Foundation for Medical Education and Research,

89(2), 163-172. https://doi.org/10.1016/j.mayocp.2013.09.019

Lieutaud, T., Gadegbeku, B., Ndiaye, A., Chiron, M., & Viallon, V. (2016). The

decrease in traumatic brain injury epidemics deriving from road traffic collision

following strengthened legislative measures in France. PLoS one, 11(11),

Article e0167082. https://doi.org/10.1371/journal.pone.0167082

Livingston, L. A., Kennedy, R. E., Marwitz, J. H., Arango-Lasprilla, J. C., Rapport,

L. J., Bushnik, T., & Gary, K. W. (2010). Predictors of family caregivers' life

satisfaction after traumatic brain injury at one and two years post-injury: A

longitudinal multi-center investigation. NeuroRehabilitation, 27(1), 73-81.

https://doi.org/10.3233/NRE-2010-0582

Losada, A., Márquez-González, M., Knight, B. G., Yanguas, J., Sayegh, P., &

Romero-Moreno, R. (2010). Psychosocial factors and caregivers’ distress:

Effects of familism and dysfunctional thoughts. Aging & Mental Health, 14(2),

193-202. https://doi.org/10.1080/13607860903167838

Lukhmana, S., Bhasin, S., Chhabra, P., & Bhatia, M. (2015). Family caregivers'

burden: A hospital based study in 2010 among cancer patients from Delhi.

https://doi.org/10.1186/s12883-016-0712-2

Bibliography 173

Indian Journal of Cancer, 52(1), 146-151. https://doi.org/10.4103/0019-

509X.175584

Maas, A.R, Menon, D.K., Adelson, P.D., Andelic, N., Bell, M.J., Belli, A., Bragge,

P., Brazinova, A., Büki, A., Chesnut, R., Citerio, G., Coburn, M., Cooper, D.J.,

Crowder, A T., Czeiter, E., Czosnyka, M., Diaz-Arrastia, R., Dreier, J.P.,

Duhaime, A-C., Ercole, A. & van Essen, T. (2017). Traumatic brain injury:

integrated approaches to improve prevention, clinical care, and research. The

Lancet Neurology, 16(12), 987-1048. https://doi.org/10.1016/S1474-

4422(17)30371-X

Mackintosh, S. (2009). Functional independence measure. Australian Journal of

Physiotherapy, 55(1), Article 65. https://doi.org/10.1016/S0004-9514(09)70066-

2

Man, D. (2002). Family caregivers' reactions and coping for persons with brain

injury. Brain Injury, 16(12), 1025-1037.

https://doi.org/10.1080/0269905021000010087

Marsh, N. V., Kersel, D. A., Havill, J. A., & Sleigh, J. W. (2002). Caregiver burden

during the year following severe traumatic brain injury. Journal of clinical and

experimental neuropsychology, 24(4), 434-447.


Marsh, N. V., Kersel, D. A., Havill, J. H., & Sleigh, J. W. (2002). Caregiver burden

during the year following severe traumatic brain injury. Journal of clinical and

experimental neuropsychology, 24(4), 434-447.


https://doi.org/10.1016/S0004-9514(09)70066-2

https://doi.org/10.1016/S0004-9514(09)70066-2

174 Bibliography

Mavundla, T. R., Toth, F., & Mphelane, M. L. (2009). Caregiver experience in

mental illness: a perspective from a rural community in South Africa.

International Journal of Mental Health Nursing, 18(5), 357-367.

https://doi.org/10.1111/j.1447-0349.2009.00624.x

May, M., Milders, M., Downey, B., Whyte, M., Higgins, V., Wojcik, Z., Amin, S. &

O’Rourke, S. (2017). Social behavior and impairments in social cognition

following traumatic brain injury. Journal of the International

Neuropsychological Society, 23(5), 400-411.

https://doi.org/10.1017/S1355617717000182

Mayring, P. (2007). Mixed Methodology in Psychological Research. Sense

Publishers. https://doi.org/

Mazlan, M., Ghani, S. Z. S. A., Tan, K.-F., & Subramanian, P. (2016). Life

satisfaction and strain among informal caregivers of patients with traumatic

brain injury in Malaysia. Disability and Rehabilitation, 38(22), 2198-2205.

https://doi.org/10.3109/09638288.2015.1123307

Mbakile-Mahlanza, L., Manderson, L., & Ponsford, J. (2015). The experience of

traumatic brain injury in Botswana. Neuropsychological Rehabilitation,

25(6), 936-958.

Mbakile-Mahlanza, L., Manderson, L., & Ponsford, J. (2017). Cultural beliefs about

TBI in Botswana. Neuropsychological Rehabilitation, 27(1), 38-59.

Bibliography 175

McAllister, T. W. (2008). Neurobehavioral sequelae of traumatic brain injury:

evaluation and management. World Psychiatry, 7(1), 3-10.

https://doi.org/10.1002/j.2051-5545.2008.tb00139.x

McCusker, K., & Gunaydin, S. (2015). Research using qualitative, quantitative or

mixed methods and choice based on the research. Perfusion, 30(7), 537-542.

https://doi.org/ 10.1177/0267659114559116

Meaney, D. F., Morrison, B., & Dale Bass, C. (2014). The Mechanics of Traumatic

Brain Injury: A Review of What We Know and What We Need to Know for

Reducing Its Societal Burden. Journal of Biomechanical Engineering, 136(2),

021008-021008-021014. doi:10.1115/1.4026364

Mehmood, A., Allen, K. A., Al-Maniri, A., Al-Kashmiri, A., Al-Yazidi, M., &

Hyder, A. A. (2017). Trauma care in Oman: A call for action. Surgery, 162(6),

S107-S116. https://doi.org/10.1016/j.surg.2017.01.028

Merluzzi, T. V., Philip, E. J., Vachon, D. O., & Heitzmann, C. A. (2011).

Assessment of self-efficacy for caregiving: The critical role of self-care in

caregiver stress and burden. Palliative & Supportive Care, 9(1), 15-24.

https://doi.org/10.1017/S1478951510000507

Miles, M. B., Huberman, A. M., Huberman, M. A., & Huberman, M. (1994).

Qualitative Data Analysis: An Expanded Sourcebook. Sage.

Ministry of Health (2016). Annual Health Report. Muscat, Sultanate of Oman.

Mittelman, M. (2008). Psychosocial intervention research: challenges, strategies

and measurement issues.Taylor & Francis.

176 Bibliography

Montgomery, R. J., & Borgatta, E. F. (1989). The effects of alternative support

strategies on family caregiving. The Gerontologist, 29(4), 457-464.

https://doi.org/10.1093/geront/29.4.457

Montgomery, R. J., Gonyea, J. G., & Hooyman, N. R. (1985). Caregiving and the

experience of subjective and objective burden. Family Relations, 34(1), 19-26.

https://doi.org/ 10.2307/583753

Montgomery, R. J., Rowe, J. M., & Kosloski, K. (2007). Family caregiving. In

Blackburn, J.A. & Dulmas, C.N. (Eds.), Handbook of Gerontology: Evidence-

based Approaches to Theory, Practice, and Policy, 426-454. John Wiley &

Sons, Inc.

Montgomery, R. J., Stull, D. E., & Borgatta, E. F. (1985). Measurement and the

analysis of burden. Research on Aging, 7(1), 137-152.

https://doi.org/10.1177/0164027585007001007

Morse, J. M. (2016). Mixed method design: Principles and procedures. Routledge.

Musharrafi, S., Al-Ruzaiqi, W., & Al-Adawi, S. (2017). Mental health stigma among

Oman Medical Speciality Board (OMSB) residents. European Psychiatry, 41,

Article S516. https://doi.org/ 0.1016/j.eurpsy.2017.01.675

Nalder, E., Fleming, J., Foster, M., Cornwell, P., Shields, C., & Khan, A. (2012).

Identifying factors associated with perceived success in the transition from

hospital to home after brain injury. The Journal of Head Trauma Rehabilitation,

27(2), 143-153. https://doi.org/10.1097/HTR.0b013e3182168fb1

Bibliography 177

Namkung, E. H., Greenberg, J. S., & Mailick, M. R. (2016). Well-being of sibling

caregivers: Effects of kinship relationship and race. The Gerontologist, 57(4),

626-636. https://doi.org/10.1093/geront/gnw008

Nasreddine, Z. S., Phillips, N. A., Bédirian, V., Charbonneau, S., Whitehead, V.,

Collin, I., . . . Chertkow, H. (2005). The Montreal Cognitive Assessment,

MoCA: a brief screening tool for mild cognitive impairment. Journal of the

American Geriatrics Society, 53(4), 695-699. https://doi.org/10.1111/j.1532-

5415.2005.53221.

Navaie-Waliser, M., Spriggs, A., & Feldman, P. H. (2002). Informal Caregiving:

Differential Experiences by Gender. Medical Care, 40(12), 1249-1259.

https://doi.org/10.1097/01.MLR.0000036408.76220.1F

Niemeier, J. P., & Burnett, D. M. (2001). No such thing as 'uncomplicated

bereavement' for patients in rehabilitation. Disability and Rehabilitation, 23(15),

645-653. https://doi.org/10.1080/09638280110049324

Nijboer, J. M., van der Naalt, J., & ten Duis, H.-J. (2010). Patients beyond

salvation?: Various categories of trauma patients with a minimal Glasgow Coma

Score. Injury, 41(1), 52-57. https://doi.org/10.1016/j.injury.2009.05.030

Nonterah, C. W., Jensen, B. J., Perrin, P. B., Stevens, L. F., Cabrera, T. V., Jiménez-

Maldonado, M., & Arango-Lasprilla, J. C. (2013). The influence of TBI

impairments on family caregiver mental health in Mexico. Brain Injury, 27(11),

1287-1293. https://doi.org/10.3109/02699052.2013.812243

178 Bibliography

Norrish, M. I. (2015). Disclosure of medical errors in Oman: Public preferences and

perceptions of current practice. Sultan Qaboos University Medical Journal,

15(2), e283-e287.

Norup, A., & Mortensen, E. L. (2015). Prevalence and predictors of personality

change after severe brain injury. Archives of Physical Medicine and

Rehabilitation, 96(1), 56-62. https://doi.org/10.1016/j.apmr.2014.08.009

Osuna, O. V. (2017). “Being a caregiver is the most sincere love you can have”:

Experienced Caregivers Discuss Dirty Work and Good Care. (Master's

dissertation, Sarah Lawrence College, New York) Retrieved from

https://digitalcommons.slc.edu/cgi/viewcontent.cgi?article=1029&context=wom

enshistory_etd

Ottenbacher, K. J., Hsu, Y., Granger, C. V., & Fiedler, R. C. (1996). The reliability

of the functional independence measure: a quantitative review. Archives of

Physical Medicine and Rehabilitation, 77(12), 1226-1232.

https://doi.org/10.1016/S0003-9993(96)90184-7

Oxford Dictionary. predistination (n.d.). Retrieved 11 February 2020

https://www.oxfordlearnersdictionaries.com/definition/english/predestination

Padela, A., Gunter, K., & Killawi, A. (2011). Meeting the Healthcare Needs of

American Muslims: Challenges and Strategies for Healthcare Settings. Institute

for Social Policy and Understanding. https://www.ispu.org/wp-

content/uploads/2016/09/620_ISPU_Report_Aasim-Padela_final.pdf

Pan, Y., Jones, P. S., & Winslow, B. W. (2017). The relationship between mutuality,

filial piety, and depression in family caregivers in China. Journal of

https://digitalcommons.slc.edu/cgi/viewcontent.cgi?article=1029&context=womenshistory_etd

https://digitalcommons.slc.edu/cgi/viewcontent.cgi?article=1029&context=womenshistory_etd

https://www.oxfordlearnersdictionaries.com/definition/english/predestination

https://www.ispu.org/wp-content/uploads/2016/09/620_ISPU_Report_Aasim-Padela_final.pdf

https://www.ispu.org/wp-content/uploads/2016/09/620_ISPU_Report_Aasim-Padela_final.pdf

Bibliography 179

Transcultural Nursing, 28(5), 455-463.

https://doi.org/10.1177/1043659616657877

Patel, H., Bouamra, O., Woodford, M., King, A., Yates, D., & Lecky, F. (2005).

Trends in head injury outcome from 1989 to 2003 and the effect of

neurosurgical care: an observational study. The Lancet, 366(9496), 1538-1544.

https://doi.org/10.1016/S0140-6736(05)67626-X

Pearce, M. J., Medoff, D., Lawrence, R. E., & Dixon, L. (2016). Religious coping

among adults caring for family members with serious mental illness. Community

Mental Health Journal, 52(2), 194-202. https://doi.org/10.1007/s10597-015-

9875-3

Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the

stress process: An overview of concepts and their measures. The Gerontologist,

30(5), 583-594. https://doi.org/10.1093/geront/30.5.583

Peeters, W., van den Brande, R., Polinder, S., Brazinova, A., Steyerberg, E. W.,

Lingsma, H. F., & Maas, A. I. (2015). Epidemiology of traumatic brain injury

in Europe. Acta neurochirurgica, 157(10), 1683-1696.

Penning, M. J., & Wu, Z. (2015). Caregiver stress and mental health: Impact of

caregiving relationship and gender. The Gerontologist, 56(6), 1102-1113.

https://doi.org/10.1093/geront/gnv038

Perrin, P. B., Stevens, L. F., Sutter, M., Hubbard, R., Sosa, D. M. D., Jove, I. G. E.,

& Arango-Lasprilla, J. C. (2013). Exploring the connections between traumatic

brain injury caregiver mental health and family dynamics in Mexico City,

Mexico. Physical Medicine & Rehabilitation, 5(10), 839-849.


180 Bibliography

Petkari, E. (2015). Explanatory models of mental illness: a qualitative study with

Emirati future mental health practitioners. Mental Health, Religion & Culture,

18(9), 738-752. https://doi.org/10.1080/13674676.2015.1091447

Pharr, J. R., Dodge Francis, C., Terry, C., & Clark, M. C. (2014). Culture,

caregiving, and health: exploring the influence of culture on family caregiver

experiences. ISRN Public Health, 2014, Article 689826.

http://dx.doi.org/10.1155/2014/689826

Phelan, S. M., Griffin, J. M., Hellerstedt, W. L., Sayer, N. A., Jensen, A. C., Burgess,

D. J., & Van Ryn, M. (2011). Perceived stigma, strain, and mental health among

caregivers of veterans with traumatic brain injury. Disability and Health

Journal, 4(3), 177-184. http://dx.doi.org/10.1016/j.dhjo.2011.03.003

Plank, A., Mazzoni, V., & Cavada, L. (2012). Becoming a caregiver: new family

carers’ experience during the transition from hospital to home. Journal of

Clinical Nursing, 21(13-14), 2072-2082. http://dx.doi.org/10.1111/j.1365-

2702.2011.04025.x

Ponsford, J., Olver, J., Ponsford, M., & Nelms, R. (2003). Long-term adjustment of

families following traumatic brain injury where comprehensive rehabilitation

has been provided. Brain Injury, 17(6), 453-468.

http://dx.doi.org/10.1080/026990503100007014

Ponsford, J., & SchÖNberger, M. (2010). Family functioning and emotional state

two and five years after traumatic brain injury. Journal of the International

Neuropsychological Society, 16(2), 306-317.

http://dx.doi.org/10.1017/S1355617709991342

http://dx.doi.org/10.1155/2014/689826

Bibliography 181

Ponsford, J., Sloan, S., & Snow, P. (2012). Traumatic Brain Injury: Rehabilitation

for Everyday Adaptive Living. Psychology Press.

Ponsford, J. L., & Spitz, G. (2015). Stability of employment over the first 3 years

following traumatic brain injury. The Journal of Head Trauma Rehabilitation,

30(3), E1-E11. http://dx.doi.org/10.1097/HTR.0000000000000033

Powell, J. M., Wise, E. K., Brockway, J. A., Fraser, R., Temkin, N., & Bell, K. R.

(2017). Characteristics and concerns of caregivers of adults with traumatic brain

injury. Journal of Head Trauma Rehabilitation, 32(1), E33-E41.


Rabinowitz, Y. G., Mausbach, B. T., Atkinson, P. J., & Gallagher-Thompson, D.

(2009). The relationship between religiosity and health behaviors in female

caregivers of older adults with dementia. Aging and Mental Health, 13(6), 788-

798. http://dx.doi.org/10.1080/13607860903046446

Rahman, T. T. A., & El Gaafary, M. M. (2009). Montreal Cognitive Assessment

Arabic version: reliability and validity prevalence of mild cognitive impairment

among elderly attending geriatric clubs in Cairo. Geriatrics & Gerontology

International, 9(1), 54-61. http://dx.doi.org/10.1111/j.1447-0594.2008.00509.x

Rasmussen, M. S., Andelic, N., Nordenmark, T. H., Arango-Lasprilla, J. C., &

Soberg, H. L. (2019). The family as a resource for improving patient and family

functioning after traumatic brain injury: A descriptive nonrandomized feasibility

study of a family centered intervention. Cogent Medicine, 6(1), Article 1607433.

http://dx.doi.org/10.1080/2331205X.2019.1607433

182 Bibliography

Rassovsky, Y., Levi, Y., Agranov, E., Sela-Kaufman, M., Sverdlik, A., & Vakil, E.

(2015). Predicting long-term outcome following traumatic brain injury (TBI).

Journal Of Clinical And Experimental Neuropsychology, 37(4), 354-366.

http://dx.doi.org/10.1080/13803395.2015.1015498

Ravaud, J.-F., Delcey, M., & Yelnik, A. (1999). Construct validity of the functional

independence measure (FIM): Questioning the unidimensionality of the scale

and the "value" of FIM scores. Scandinavian Journal of Rehabilitation

Medicine, 31(1), 31-42.

Revenson, T. A., Griva, K., Luszczynska, A., Morrison, V., Panagopoulou, E.,

Vilchinsky, N., & Hagedoorn, M. (2016). Gender and caregiving: The costs of

caregiving for women. Caregiving in the Illness Context (pp. 48-63). Springer.

http://dx.doi.org/10.1057/9781137558985.0008

Rivera, P. A., Elliott, T. R., Berry, J. W., & Grant, J. S. (2008). Problem-solving

training for family caregivers of persons with traumatic brain injuries: A

randomized controlled trial. Archives of Physical Medicine and Rehabilitation,

89(5), 931-941. http://dx.doi.org/10.1016/j.apmr.2007.12.032

Rohleder, P., Lambie, J., & Hale, E. (2017). A qualitative study of the emotional

coping and support needs of children living with a parent with a brain injury.

Brain Injury, 31(2), 199-207. http://dx.doi.org/10.1080/02699052.2016.1225985

Rolland, J. S. (2019). Families, health, and illness. In Gehlert, S. & Browne, T.

(Eds.), Handbook of Health Social Work, 331-357.

https://doi.org/10.1002/9781119420743.ch15

https://doi.org/10.1002/9781119420743.ch15

Bibliography 183

Roozenbeek, B., Maas, A. I., & Menon, D. K. (2013). Changing patterns in the

epidemiology of traumatic brain injury. Nature Reviews Neurology, 9(4), 231.

http://dx.doi.org/10.1038/nrneurol.2013.22

Rotondi, A. J., Sinkule, J., Balzer, K., Harris, J., & Moldovan, R. (2007). A

qualitative needs assessment of persons who have experienced traumatic brain

injury and their primary family caregivers. The Journal of Head Trauma


Ruet, A., Bayen, E., Jourdan, C., Diehl, P. P., & Azouvi, P. (2018). 8-year outcome

after severe traumatic brain injury: Results from the Paris-TBI Study. Annals of

Physical and Rehabilitation Medicine, 61, Article e38.

http://dx.doi.org/10.1016/j.rehab.2018.05.084/

Ruet, A., Jourdan, C., Bayen, E., Darnoux, E., Sahridj, D., Ghout, I., Azerad, S.,

Pradat Diehl, P., Aegerter, P., Charanton, J., Vallat Azouvi, C. & Azouvi, P.

(2018). Employment outcome four years after a severe traumatic brain injury:

results of the Paris severe traumatic brain injury study. Disability and


http://dx.doi.org/10.1080/09638288.2017.1327992

Ryan, J., Al Sheedi, Y. M., White, G., & Watkins, D. (2015). Respecting the culture:

undertaking focus groups in Oman. Qualitative Research, 15(3), 373-388.

http://dx.doi.org/10.1177/1468794114524220

Ryan, N. P., van Bijnen, L., Catroppa, C., Beauchamp, M. H., Crossley, L., Hearps,

S., & Anderson, V. (2016). Longitudinal outcome and recovery of social

problems after pediatric traumatic brain injury (TBI): Contribution of brain

184 Bibliography

insult and family environment. International Journal of Developmental

Neuroscience, 49, 23-30. http://dx.doi.org/10.1016/j.ijdevneu.2015.12.004

Saban, K. L., Hogan, N. S., Hogan, T. P., & Pape, T. L. B. (2015). He looks normal

but… challenges of family caregivers of veterans diagnosed with a traumatic

brain injury. Rehabilitation Nursing, 40(5), 277-285.

http://dx.doi.org/10.1002/rnj.182

Sabella, S. A., Andrzejewski, J. H., & Wallgren, A. (2018). Financial hardship after

traumatic brain injury: a brief scale for family caregivers. Brain Injury, 32(7),

926-932. http://dx.doi.org/10.1080/02699052.2018.1469168

Sabella, S. A., & Suchan, C. S. (2019). The contribution of social support,

professional support, and financial hardship to family caregiver life satisfaction

after traumatic brain injury. The Journal of Head Trauma Rehabilitation, 34(4),

233-240. http://dx.doi.org/10.1097/HTR.0000000000000471

Sbordone, R. J., Kral, M., Gerard, M., & Katz, J. (1984). Evidence of a "command

performance syndrome" in the significant others of the victims of severe

traumatic head injury. International Journal of Clinical Neuropsychology, 6,

183-185.

Scholten, A. (2016). Outcome after Traumatic Brain Injury: Epidemiology, Impact

and Assessment. (Doctoral dissertation, Erasmus University Rotterdam,

Netherlands). Retrieved from

https://pdfs.semanticscholar.org/5d2d/503044842ab68d4c9fe5f805e8786218b85

c.pdf.

https://pdfs.semanticscholar.org/5d2d/503044842ab68d4c9fe5f805e8786218b85c.pdf

https://pdfs.semanticscholar.org/5d2d/503044842ab68d4c9fe5f805e8786218b85c.pdf

Bibliography 185

Schönberger, M., Ponsford, J., Olver, J., & Ponsford, M. (2010). A longitudinal

study of family functioning after TBI and relatives' emotional status.

Neuropsychological Rehabilitation, 20(6), 813-829.

http://dx.doi.org/10.1080/09602011003620077

Schrank, B., Ebert‐Vogel, A., Amering, M., Masel, E. K., Neubauer, M., Watzke, H.,

. . . Schur, S. (2016). Gender differences in caregiver burden and its

determinants in family members of terminally ill cancer patients. Psycho‐

oncology, 25(7), 808-814. http://dx.doi.org/10.1002/pon.4005

Schulz, R., Eden, J. (2016a). Family Caregivers' Interactions with Health Care and

Long-Term Services and Supports. In Schulz, R. & Eden, J.(Eds.), National

Academies of Sciences, Engineering & Medicine.

http://dx.doi.org/10.17226/23606

Schulz, R., Eden, J. National Academies of Sciences, E., & Medicine. (2016b).

Family Caregiving Roles and Impacts. In Schulz, R. & Eden, J.(Eds.), National

Academies of Sciences, Engineering & Medicine.

http://dx.doi.org/10.17226/23606

Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family

caregiving. Journal of Social Work Education, 44(sup3), 105-113.

http://dx.doi.org/10.5175/JSWE.2008.773247702

Schutz, R. E., Coats, H. L., Engelberg, R. A., Curtis, J. R., & Creutzfeldt, C. J.

(2017). Is there hope? Is she there? How families and clinicians experience

186 Bibliography

severe acute brain injury. Journal of Palliative Medicine, 20(2), 170-176.

http://dx.doi.org/10.1089/jpm.2016.0286

Seelig, J. M., Becker, D. P., Miller, J. D., Greenberg, R. P., Ward, J. D., & Choi, S.

C. (1981). Traumatic acute subdural hematoma: major mortality reduction in

comatose patients treated within four hours. New England Journal of Medicine,

304(25), 1511-1518. http://dx.doi.org/10.1089/jpm.2016.0286

Senathi-Raja, D., Ponsford, J., & Schönberger, M. (2010). Impact of age on long-

term cognitive function after traumatic brain injury. Neuropsychology, 24(3),

336-344. http://dx.doi.org/10.1037/a0018239

Serio, C. D., Kreutzer, J. S., & Gervasio, A. H. (1995). Predicting family needs after

brain injury: Implications for intervention. The Journal of Head Trauma

Rehabilitation, 10(2), 32-45. http://dx.doi.org/10.1097/00001199-199504000-

00005

Sewell, W. H. (2004). The concept (s) of culture. In Spiegel, G.M. (Ed.), Practicing

History, (35-61). Routledge. https://doi.org/10.4324/9780203335697

Shah, M. K., Carayannopoulos, A. G., Burke, D. T., & Al-Adawi, S. (2007). A

comparison of functional outcomes in hypoxia and traumatic brain injury: a pilot

study. Journal Of The Neurological Sciences, 260(1-2), 95-99.

http://dx.doi.org/10.1016/j.jns.2007.04.012

Sharma, N., Chakrabarti, S., & Grover, S. (2016). Gender differences in caregiving

among family-caregivers of people with mental illnesses. World Journal of

Psychiatry, 6(1), 7-17. http://dx.doi.org/10.5498/wjp.v6.i1.7

https://doi.org/10.4324/9780203335697

https://dx.doi.org/10.5498%2Fwjp.v6.i1.7

Bibliography 187

Shiba, K., Kondo, N., & Kondo, K. (2016). Informal and formal social support and

caregiver burden: The AGES caregiver survey. Journal of Epidemiology,

26(12), 622-628. http://dx.doi.org/10.2188/jea.JE20150263

Shifren, K. (2001). Early caregiving and adult depression: Good news for young

caregivers. The Gerontologist, 41(2), 188-190.

http://dx.doi.org/10.1093/geront/41.2.188

Shifren, K., & Kachorek, L. (2003). Does early caregiving matter? The effects on

young caregivers' adult mental health. International Journal of Behavioral

Development, 27(4), 338-346. http://dx.doi.org/10.1080/01650250244000371

Sibai, A., Rizk, A., & Kronfol, N. (2014). Ageing in the Arab region: Trends,

implications and policy options. Center for Studies on Aging (CSA), ESCWA

and UNFPA. Retrieved from http://csa. org. lb/cms/assets/csa%

20publications/unfpa, 20.

Siegert, R. J., Jackson, D. M., Tennant, A., & Turner-Stokes, L. (2010). Factor

analysis and Rasch analysis of the Zarit Burden Interview for acquired brain

injury carer research. Journal of Rehabilitation Medicine, 42(4), 302-309.

http://dx.doi.org/10.2340/16501977-0511

Silver, J. M. (2011). Textbook of Traumatic Brain Injury Vol. 2. American

Psychiatric Publishing.

Silverberg, N. D., Panenka, W. J., & Iverson, G. L. (2018). Work productivity loss

after mild traumatic brain injury. Archives of Physical Medicine and

Rehabilitation, 99(2), 250-256. http://dx.doi.org/10.1016/j.apmr.2017.07.006

http://csa/

188 Bibliography

Simpson, G., & Jones, K. (2013). How important is resilience among family

members supporting relatives with traumatic brain injury or spinal cord injury?

Clinical Rehabilitation, 27(4), 367-377.

http://dx.doi.org/10.1177/0269215512457961

Singh, R., Mason, S., Lecky, F., & Dawson, J. (2018). Prevalence of depression after

TBI in a prospective cohort: The SHEFBIT study. Brain Injury, 32(1), 84-90.

http://dx.doi.org/10.1080/02699052.2017.1376756

Son, G. R., Wykle, M. L., & Zausniewski, J. A. (2003). Korean adult child

caregivers of older adults with dementia: predictors of burden and satisfaction.

Journal of Gerontological Nursing, 29(1), 19-28.

http://dx.doi.org/10.3928/0098-9134-20030101-09

Stein, C. H., Wemmerus, V. A., Ward, M., Gaines, M. E., Freeberg, A. L., & Jewell,

T. C. (1998). " Because they're my parents": An intergenerational study of felt

obligation and parental caregiving. Journal of Marriage and the Family, 611-

622.

Steinmetz, S. K., & Sussman, M. B. (2013). Handbook of Marriage and the Family.

Springer Science & Business Media.

Stineman, M. G., Maislin, G., Fiedler, R. C., & Granger, C. V. (1997). A prediction

model for functional recovery in stroke. Stroke, 28(3), 550-556.

http://dx.doi.org/10.1161/01.STR.28.3.550

Stocchetti, N., & Zanier, E. R. (2016). Chronic impact of traumatic brain injury on

outcome and quality of life: a narrative review. Critical Care, 20(1), Article

148. http://dx.doi.org/10.1186/s13054-016-1318-1

Bibliography 189

Strauss, D. J., Shavelle, R. M., & Anderson, T. W. (1998). Long-term survival of

children and adolescents after traumatic brain injury. Archives of Physical

Medicine and Rehabilitation, 79(9), 1095-1100.

http://dx.doi.org/10.1016/S0003-9993(98)90177-0

Sue, D., Sue, D. W., Sue, S., & Sue, D. M. (2015). Understanding Abnormal

Behavior. Houghton Mifflin Company.

Sung, C., Perrin, P. B., Mickens, M., Cabrera, T. V., Jimenez-Maldonado, M.,

Martinez-Cortes, M. L., & Arango-Lasprilla, J. C. (2013). Influence of TBI

impairments and related caregiver stress on family needs in Guadalajara,

Mexico. Australian Journal of Rehabilitation Counselling, 19(2), 100-118.

http://dx.doi.org/10.1017/jrc.2013.14

Syed Hassan, S. T., Jamaludin, H., Abd Raman, R., Mohd Riji, H., & Wan Fei, K.

(2013). Mental Trauma Experienced by Caregivers of patients with Diffuse

Axonal Injury or Severe Traumatic Brain Injury. Trauma monthly, 18(2), 56-61.

http://dx.doi.org/10.5812/traumamon.11522

Talley, R. C., Chwalisz, K., & Buckwalter, K. C. (2011). Rural Caregiving in the

United States: Research, Practice, Policy: Springer Science & Business Media.

Tam, S., McKay, A., Sloan, S., & Ponsford, J. (2015). The experience of challenging

behaviours following severe TBI: a family perspective. Brain Injury, 29(7-8),

813-821. http://dx.doi.org/10.3109/02699052.2015.1005134

Te Ao, B. J. (2014). Measuring the economic cost of traumatic brain injury (TBI) in

New Zealand: a cost-of-illness study. (Doctoral dissertation, Auckland

University of Technology, Auckland). Retrieved from

https://dx.doi.org/10.5812%2Ftraumamon.11522

190 Bibliography

https://openrepository.aut.ac.nz/bitstream/handle/10292/8921/TeAoB.pdf?seque

nce=1&isAllowed=y

Tepas III, J. J., Pracht, E. E., Orban, B. L., & Flint, L. M. (2013). High-volume

trauma centers have better outcomes treating traumatic brain injury. Journal of

Trauma and Acute Care Surgery, 74(1), 143-148.

http://dx.doi.org/10.1097/TA.0b013e3182788b5a

Theadom, A., Parag, V., Dowell, T., McPherson, K., Starkey, N., Barker-Collo, S.,

Jones, K., Ameratunga, S. & Feign, V.L. (2016). Persistent problems 1 year

after mild traumatic brain injury: a longitudinal population study in New

Zealand. Br J Gen Pract,spell out 66(642), e16-e23.

http://dx.doi.org/10.3399/bjgp16X683161

Toglia, J., & Golisz, K. (2017). Traumatic Brain Injury (TBI) and the Impact on

Daily Life. In N. D. Chiaravalloti & Y. Goverover (Eds.), Changes in the Brain:

Impact on Daily Life (pp. 117-143). Springer New York.

Tramonti, F., Bonfiglio, L., Di Bernardo, C., Ulivi, C., Virgillito, A., Rossi, B., &

Carboncini, M. C. (2015). Family functioning in severe brain injuries:

correlations with caregivers’ burden, perceived social support and quality of life.

Psychology, Health & Medicine, 20(8), 933-939.

http://dx.doi.org/10.1080/13548506.2015.1009380

Tramonti, F., Bongioanni, P., Leotta, R., Puppi, I., & Rossi, B. (2015). Age, gender,

kinship and caregiver burden in amyotrophic lateral sclerosis. Psychology,

Health & Medicine, 20(1), 41-46.

http://dx.doi.org/10.1080/13548506.2014.892627

https://openrepository.aut.ac.nz/bitstream/handle/10292/8921/TeAoB.pdf?sequence=1&isAllowed=y

https://openrepository.aut.ac.nz/bitstream/handle/10292/8921/TeAoB.pdf?sequence=1&isAllowed=y

Bibliography 191

Tsutsui, T., Muramatsu, N., & Higashino, S. (2013). Changes in perceived filial

obligation norms among coresident family caregivers in Japan. The

Gerontologist, 54(5), 797-807. http://dx.doi.org/10.1093/geront/gnt093

Turner, B., Fleming, J., Cornwell, P., Worrall, L., Ownsworth, T., Haines, T.,

Kendall, M. & Chenoweth, L. (2007). A qualitative study of the transition from

hospital to home for individuals with acquired brain injury and their family

caregivers. Brain Injury, 21(11), 1119-1130.

http://dx.doi.org/10.1080/02699050701651678

Turner, B., Fleming, J., Parry, J., Vromans, M., Cornwell, P., Gordon, C., &

Ownsworth, T. (2010). Caregivers of adults with traumatic brain injury: The

emotional impact of transition from hospital to home. Brain Impairment, 11(3),

281-292. http://dx.doi.org/10.1375/brim.11.3.281

Turner, B. J., Fleming, J. M., Ownsworth, T. L., & Cornwell, P. L. (2008). The

transition from hospital to home for individuals with acquired brain injury: a

literature review and research recommendations. Disability and Rehabilitation,

30(16), 1153-1176. http://dx.doi.org/10.1080/09638280701532854

United Nations Development Programme. (2011). Five Arab States Among Top

Leaders in Long-Term Development Gains. UNDP Human Development

Report.

https://www.undp.org/content/dam/somalia/docs/press/HDR%202010%20RBA

S%20Press%20Release.pdf

Uzzell, B. P., & Stonnington, H. H. (2014). Recovery after Traumatic Brain Injury.

Psychology Press.

192 Bibliography

Vaishnavi, S., Rao, V., & Fann, J. R. (2009). Neuropsychiatric problems after

traumatic brain injury: unraveling the silent epidemic. Psychosomatics, 50(3),

198-205. http://dx.doi.org/10.1176/appi.psy.50.3.198

Van Ryn, M., Sanders, S., Kahn, K., Van Houtven, C., Griffin, J. M., Martin, M.,

Atienza, A.A., Phelan, S., Finstand, D. & Rowland, J. (2011). Objective burden,

resources, and other stressors among informal cancer caregivers: a hidden

quality issue? Psycho‐oncology, 20(1), 44-52.

http://dx.doi.org/10.1002/pon.1703

Vangel Jr, S. J., Rapport, L. J., & Hanks, R. A. (2011). Effects of family and

caregiver psychosocial functioning on outcomes in persons with traumatic brain

injury. The Journal of Head Trauma Rehabilitation, 26(1), 20-29.

http://dx.doi.org/10.1097/HTR.0b013e318204a70d

Wade, S. L., Raj, S. P., Moscato, E. L., & Narad, M. E. (2019). Clinician

perspectives delivering telehealth interventions to children/families impacted by

pediatric traumatic brain injury. Rehabilitation Psychology, 64(3), 298-306.

http://dx.doi.org/10.1037/rep0000268

Wade, S. L., Taylor, H. G., Drotar, D., Stancin, T., Yeates, K. O., & Minich, N. M.

(2002). A prospective study of long-term caregiver and family adaptation

following brain injury in children. The Journal of Head Trauma Rehabilitation,

17(2), 96-111.

Warren, A. M., Rainey, E. E., Weddle, R. J., Bennett, M., Roden-Foreman, K., &

Foreman, M. L. (2016). The intensive care unit experience: Psychological

impact on family members of patients with and without traumatic brain injury.

Bibliography 193

Rehabilitation Psychology, 61(2), 179-185. all pages

http://dx.doi.org/10.1037/rep0000080

Wedcliffe, T., & Ross, E. (2001). The psychological effects of traumatic brain injury

on the quality of life of a group of spouses/partners. The South African Journal

of Communication Disorders, 48, 77-99.

Wenrich, M. D., Curtis, J. R., Ambrozy, D. A., Carline, J. D., Shannon, S. E., &

Ramsey, P. G. (2003). Dying patients' need for emotional support and

personalized care from physicians: perspectives of patients with terminal illness,

families, and health care providers. Journal of pain and symptom management,

25(3), 236-246. http://dx.doi.org/10.1016/S0885-3924(02)00694-2

WHO (2007). Faces behind the figures: voices of road traffic crash victims and their

families, World Health Organization.

https://apps.who.int/iris/bitstream/handle/10665/43548/9241594640_eng.pdf;jse

ssionid=12DB591179F92D9E2341676293FEB0A3?sequence=1

WHO (2015). Oman: WHO Statistical Profile. World Health Organization.

https://www.who.int/countries/omn/en/

WHO (2018a). Road Traffic Injuries. World Health Organization.

https://www.who.int/violence_injury_prevention/road_traffic/en/

WHO (2018b). Global Status Report on Road Safety. World Health Organization.

file:///C:/Users/HP/Downloads/9789241565684-eng%20(1).pdf

Willis, R. (2012). Individualism, collectivism and ethnic identity: cultural

assumptions in accounting for caregiving behaviour in Britain. Journal of Cross-

https://apps.who.int/iris/bitstream/handle/10665/43548/9241594640_eng.pdf;jsessionid=12DB591179F92D9E2341676293FEB0A3?sequence=1

https://apps.who.int/iris/bitstream/handle/10665/43548/9241594640_eng.pdf;jsessionid=12DB591179F92D9E2341676293FEB0A3?sequence=1

https://www.who.int/countries/omn/en/

https://www.who.int/violence_injury_prevention/road_traffic/en/

194 Bibliography

cultural Gerontology, 27(3), 201-216. http://dx.doi.org/10.1007/s10823-012-

9175-0

Wilson, L., Stewart, W., Dams-O'Connor, K., Diaz-Arrastia, R., Horton, L., Menon,

D. K., & Polinder, S. (2017). The chronic and evolving neurological

consequences of traumatic brain injury. The Lancet Neurology, 16(10), 813-825.

http://dx.doi.org/10.1016/S1474-4422(17)30279-X

Wongvatunyu, S., & Porter, E. J. (2005). Mothers' experience of helping young

adults with traumatic brain injury. Journal of Nursing Scholarship, 37(1), 48-56.

http://dx.doi.org/10.1111/j.1547-5069.2005.00015.x

Wongvatunyu, S., & Porter, E. J. (2008). Changes in Family Life Perceived by

Mothers of Young Adult TBI Survivors. Journal of Family Nursing, 14(3), 314-

332. http://dx.doi.org/10.1177/1074840708321473

Wood, R. L., & Yurdakul, L. K. (1997). Change in relationship status following

traumatic brain injury. Brain Injury, 11(7), 491-501.

http://dx.doi.org/10.1080/bij.11.7.491.501

Worldometers. (2019). Oman Population. https://www.worldometers.info/world-

population/oman-population/.

Yates, M. E., Tennstedt, S., & Chang, B.-H. (1999). Contributors to and mediators of

psychological well-being for informal caregivers. The Journals of Gerontology

Series B: Psychological Sciences and Social Sciences, 54(1), P12-P22.

http://dx.doi.org/10.1093/geronb/54B.1.P12

Zainal, Z. (2007). Case study as a research method. Journal Kemanusiaan, 5(1).

Bibliography 195

Zarit, S., Orr, N. K., & Zarit, J. M. (1985). The hidden victims of Alzheimer's

disease: Families under stress. NYU Press.

Zarit, S. H., Bangerter, L. R., Liu, Y., & Rovine, M. J. (2017). Exploring the benefits

of respite services to family caregivers: methodological issues and current

findings. Aging & Mental Health, 21(3), 224-231.

http://dx.doi.org/10.1080/13607863.2015.1128881

Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired

elderly: correlates of feelings of burden. The Gerontologist, 20(6), 649-655.

http://dx.doi.org/10.1093/geront/20.6.649

Zarit, S. H., & Talley, R. C. (2012). Caregiving for Alzheimer's disease and related

disorders. Springer.

Zgaljardic, D. J., Seale, G. S., Schaefer, L. A., Temple, R. O., Foreman, J., & Elliott,

T. R. (2015). Psychiatric disease and post-acute traumatic brain injury. Journal

of Neurotrauma, 32(23), 1911-1925. http://dx.doi.org/10.1089/neu.2014.3569

Zhang, H., Zhang, X.-N., Zhang, H.-L., Huang, L., Chi, Q.-Q., Zhang, X., & Yun,

X.-P. (2016). Differences in cognitive profiles between traumatic brain injury

and stroke: A comparison of the Montreal Cognitive Assessment and Mini-

Mental State Examination. Chinese Journal of Traumatology, 19(5), 271-274.

http://dx.doi.org/10.1016/j.cjtee.2015.03.007

Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale.

Acta Psychiatrica Scandinavica, 67(6), 361-370.

http://dx.doi.org/10.1111/j.1600-0447.1983.tb09716.x

https://doi.org/10.1111/j.1600-0447.1983.tb09716.x

196 Appendices

Appendices

Appendix A

Letter Granting Access to Archived Data

Appendices 197

Appendix B

Telephone Script

The following information will be provided to the family member or patient via

telephone:

“Hello.

My name is (Insert name) and I am speaking to you on behalf of Mrs. Roopa

Koshy McCall, who is currently doing a research in the Khoula Hospital where

you are following up with your health care provider. May I speak with you some

more about the study and why I am speaking with you?

(If response is “no’, Thank you for your time. Have a good day.)

Thank you.

Please feel free to stop the conversation if at any point in the next few minutes if

you feel distressed because of the content of my conversation with you. Would

please tell me if you understand?

Thank you.

I am assisting Roopa McCall in undertaking a research to seek out the welfare of

survivors of Road Traffic Crash (RTC) related brain injury and their family

member in Oman. This study is the first of its kind, and we would like to invite

you to participate in the study with your family member who is a survivor of

RTC in the OPD of Neurology in Khoula Hospital on or before the date of your

follow-up appointment, as per your choice. Your participation might not benefit

you directly at present, however through your participation and our subsequent

findings, we want to encourage a wholistic health care system that would probe

into the needs and welfare of families such as yours in Oman.

We will run some paper-pencil tests testing current psychological and physical

function of your family member who is a survivor of RTC and a similar test to

assess the psychological status of the caregiver. These tests will take about 30

minutes to complete. Additionally, we would like to interview the family

member, who is the carer for about 1 hour after the assessments. This interview

will look into the well-being of the carer and the general experience of caring for

an individual with TBI after a RTC. None of the tests will be invasive. We will

provide you and your family member with refreshments. Should you feel any

discomfort as a result of your participation in our study, we will refer you to the

Social welfare and Psychology team in Khoula Hospital. Please feel free to

refuse to participate or to contact us for more information. Additionally, on the

day of your arrival, we will provide you with a written document with complete

information and we will once again verbally discuss with you what your

participation would entail in the study. Would you and your loved one (with the

injury OR your family member) like to participate in the study?

Thank you for your interest.

198 Appendices

Continue if verbal consent is given:

Would you let me know whether you like to meet us on the day of your

appointment in the Neurosurgery OPD or before that date?

Shall we confirm your appointment with our research team on (Date)?

If you wish at the time, or before your arrival to the hospital to withdraw from

the study, you will be allowed to do so.

Great! How are you feeling?

(If response is “Sad” or “bad”) Yes it is a difficult topic to talk about. I am

sorry for your pain. We are very concerned about your welfare and this is why

we are conducting this study in Oman. Please feel free to speak with us if your

negative feelings do not change over the next few hours, and we will refer you to

the Social workers in Khoula Hospital.

Thank you very much for your time. We look forward to seeing you.

Appendices 199

Appendix C

Information Sheets (English)

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT

–Assessment–

Psychological Status of Caregiving Family Members and Individuals with

Traumatic Brain Injury

QUT Ethics Approval Number 1700001048

RESEARCH TEAM

Principal Researcher: Miss Roopa Koshy McCall M.Phil. Student

Associate Researchers: A/Prof Nigar Khawaja Principal Supervisor

Brooke Andrew Associate Supervisor

A/Prof Kerry Armstrong Associate Supervisor

Faculty of Health, Queensland University of Technology (QUT)

A/Prof Samir Al Adawi Associate External Supervisor

Department of Behavioral Medicine, Sultan Qaboos University

DESCRIPTION

This research project is being undertaken as part of a M.Phil. study for Roopa Koshy

McCall.

The purpose of this project is to study the emotional well-being of family caregivers

of survivors of brain injury, resulting from road traffic crashes in Oman, and aims to

establish a platform for further research, and build support groups and counselling

facilities for families.

You are invited to participate in this research project because you are an individual

who has survived a traumatic brain injury following a road crash, and currently reside

with family members who provide medical and personal care in varying degrees. Your

accompanying family member will also be invited to participate in the study, as we

wish to gain a further insight into the impact of the injuries on your loved ones.

EXCLUSION

Please inform the researcher if you or your loved one are:

1. Not an Omani national.

2. Younger than 16 years of age.

3. Suffered from any neurological or psychiatric distress prior to the road traffic

crash.

4. Unable to give consent owing to current medical condition.

If you fall into any or all of the above-mentioned categories, you will not be required

to participate in the present study. We thank you for your interest, and we wish you

the very best.

200 Appendices

PARTICIPATION

Your participation will involve answering assessments gauging your current

emotional, behavioural and psychological functioning at the Khoula Hospital, Ministry

of Health or other agreed location that will take approximately 1 hour of your time.

In order to be included in the study, you will be tested on a commonly clinically used

cognitive test called the Montreal Cognitive Assessment in Arabic. If you acquire a

score of less than 26 on this test, you and your caregiver will be invited to respond to

tests that would gauge emotional and behavioural status. This score is indicative of the

presence of cognitive disturbances after the brain injury, and the current research is

interested in understanding the nature and affect the injury would have on yourself as

well as your loved ones.

The researcher will guide you through the process of providing responses on all the

assessments. The nature of the questions in the assessments involve your current

emotional status, requires solving puzzles, and describing the extent of your

dependence on your loved one, i.e., parent, spouse, child, sibling, relatives and friends.

Once the questionnaires are completed and returned to the researchers, the results will

be evaluated, and the researchers will provide you with feedback regarding your

performance. Please note that you will be not be permitted to change your

responses on the questionnaire, once scores have been evaluated and feedback is

communicated.

Your family caregiver will also be invited to participate in the study and respond to a

questionnaire, and/or an interview involving questions regarding the care and well-

being of their emotional state.

WITHDRAWAL

Your participation in this research project is entirely voluntary. If you do agree to

participate you can withdraw from the research project without comment or penalty.

You can withdraw anytime during the assessment process or up to a maximum of a

week post the assessment.

At the time of withdrawal or up to a maximum of one week after the assessment, on

request any identifiable information already obtained from you will be destroyed.

Post this time period, the information provided will be transcribed and will be used

solely for the purposes of the present study.

Your decision to participate or not participate will in no way impact upon your

current or future relationship with QUT or your health care plan in Oman.

EXPECTED BENEFITS

It is expected that this research project will not benefit you directly. However, it may

benefit a large group of caregiving families living in the Omani society, as the study

aims to build a base to encourage the emergence of support groups and counselling

Appendices 201


RISKS

There is significant risk associated with your participation in this research project,

including psychological distress owing to the sensitive nature of the questions.

In order to curb or reduce the possibility of this arising, should you face any distress,

you will be referred to the concerned department within the Ministry of Health, and

will be given the option of counselling services, free of cost in Department of Social

Services and Psychology, Khoula Hospital and Department of Behavioural Medicine,

Sultan Qaboos University.

Moreover, breaks will be provided 30 minutes into the assessment process with

refreshments and snacks.

PRIVACY AND CONFIDENTIALITY

All comments and responses will be treated confidentially unless required by law.

The names of individual persons are not required in any of the responses.

In order to facilitate a smooth communication between yourself and the researcher,

we would request your full name and mobile number. This information will not be

revealed on any documents or publication pertaining to the study and will be used

solely for the purposes of communication between the researcher and yourself. This

record will be destroyed once data has been collected and analysed for the sake of the

present study.

Any data collected as part of this research project will be stored securely as per QUT’s

Management of research data policy.

CONSENT TO PARTICIPATE

We would like to ask you to sign a written consent form (enclosed) to confirm your

agreement to participate.

QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH

PROJECT

If you have any questions or require further information please contact one of the

listed researchers:

Roopa Koshy McCall [email protected] +968-9730 0444

Samir Al Adawi [email protected] +968-2414 1150

mailto:[email protected]


202 Appendices

Nigar Khawaja [email protected] +617-3138 4540

Brooke Andrew [email protected] +617-3138 4558

Kerry Ann Armstrong [email protected] +617-3138 8418

CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE

RESEARCH PROJECT

QUT is committed to research integrity and the ethical conduct of research projects.

However, if you do have any concerns or complaints about the ethical conduct of the

research project you may contact the QUT Research Ethics Advisory Team on +61 7

3138 5123 or email [email protected]. The QUT Research Ethics Advisory

Team is not connected with the research project and can facilitate a resolution to

your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT.

PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.


tel:3138%204540


tel:3138%208418


Appendices 203

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT

–Assessment and Interview for Caregiver–

Psychological Status of Caregiving Family Members and Individuals with Traumatic

Brain Injury


RESEARCH TEAM

Principal Researcher: Miss Roopa Koshy McCall M.Phil. Student

Associate Researchers: A/Prof Nigar Khawaja Principal Supervisor

Dr. Brooke Andrew Associate Supervisor

A/Prof Kerry Armstrong Associate Supervisor

Faculty of Health, Queensland University of Technology (QUT)

A/Prof Samir Al Adawi Associate External Supervisor

Department of Behavioural Medicine, Sultan Qaboos University

DESCRIPTION

This research project is being undertaken as part of a M.Phil study for Roopa Koshy

McCall.

The purpose of this project is to study the emotional well-being and overall

experiences of caregivers of survivors of brain injury, resulting from road traffic

crashes in Oman, and aims to establish a platform for further research, and build

support groups and counselling facilities for families.

You are invited to participate in this research project because you are closely related

to an individual who has survived a traumatic brain injury following a road crash.

Your loved one will also be requested to participate in the study, as we would like to

understand the extent of the change experienced by you and your family owing to the

brain injury incurred by the road crash.

EXCLUSION

Please inform the researcher if you or your loved one are:

1. Not an Omani national.

2. Younger than 16 years of age.

3. Suffered from any neurological or psychiatric distress prior to the road traffic

crash.

4. Unable to give consent owing to current medical condition.

If you fall into any or all of the above mentioned categories, you will not be required

to participate in the present study. We thank you for your interest, and we wish you

the very best.

PARTICIPATION

204 Appendices

Prior to any assessment being conducted, we will request that your loved one who has

suffered a brain injury in a road traffic crash to respond to a commonly used clinical

tool of cognitive assessment called the ‘Montreal Cognitive Assessment’ in Arabic.

The researcher will guide your loved one through the process of responding to the

questions. Should your loved one score a total of less than 26 out of a possible 30 on

this test, we will invite both you and your loved one to continue to respond to further

tests that would take a maximum of 30 minutes. These tests aim to gauge your

emotional and behavioural status post the road crash and the trauma survived by your

loved one.

Questionnaire

Your participation as the caregiver will involve a brief questionnaire on the strain that

you may potentially face as a caregiver. Once the score on this questionnaire has been

tabulated, you will be unable to modify your responses. Feedback on this questionnaire

will be provided by the researchers once the form is completed and returned, and the

results are evaluated.

Interview

After the assessments, we would like to invite you a participate in an audio recorded

interview at the Khoula Hospital, Ministry of Health that will take approximately 1

hour of your time. Your responses on this interview will be kept confidential and once

transcribed for the purpose of the study, your anonymity will be of highest regard.

Questions on the interview will include:

1. What were your expectation and the experiences when your family member was

moved from hospital care to home?

2. Describe the on-going experience of caregiving for your loved one.

Withdrawal

Your participation in this research project is entirely voluntary. If you do agree to

participate you can withdraw from the research project without comment or penalty.

Up to a maximum of 1 week after the interview, you will be permitted to contact the

researchers to change/modify or delete any comments made during the interview.

Post this period of time, the data will be transcribed and analysed for research

purposes.

Withdrawal from the study is permitted anytime during the process of the interview/

assessment or up to a period of 1-week post interview/ assessment. At the time of

withdrawal from the study and up to a maximum of one week after the interview/

assessment, on request, any identifiable information already obtained from you will

be destroyed. Post this time period, the information provided will be transcribed and

it will not be possible to modify/delete your comments.

Your decision to participate or not participate will in no way impact upon your

current or future relationship with QUT or your health care plan in Oman.

Appendices 205

EXPECTED BENEFITS

It is expected that this research project will not benefit you directly. However, it may

benefit a large group of caregiving families living in the Omani society, as the study

aims to build a base to encourage the emergence of support groups and counselling


In order to provide you with an understanding of your performance on the test and its

implication, feedback will be provided to you once the questionnaires are returned to

the researchers and the results have been scored and evaluated.

RISKS

There is significant risk associated with your participation in this research project,

particularly psychological distress owing to the sensitive nature of the questions or as

a result of interceding on your loved one’s behalf. In order to curb or reduce the

possibility of this arising, should you face any distress, you will be referred to the

concerned department within the Ministry of Health, and will be given the option of

counselling services, free of cost in Department of Social Services and Psychology,

Khoula Hospital and Department of Behavioral Medicine, Sultan Qaboos University.

Moreover, breaks will be provided every 15-30 minutes into the interview.

PRIVACY AND CONFIDENTIALITY

All comments and responses will be treated confidentially unless required by law.

The names of individual persons are not required in any of the responses.

As the research project involves an audio recording:

• You will have the opportunity to verify your comments and responses prior to

final inclusion.

• The audio recording will be destroyed 5 years after the last publication.

• The audio recording will not be used for any other purpose.

• Only the named researchers will have access to the audio recording.

• It is not possible to participate in the research project without being audio

recorded.

In order to ensure a smooth communication, we would request you to provide us with

your full name and mobile number. This information will be used solely for the

purposes of communication between the researcher and yourself, and your identity

will not be revealed or recorded in any documents or publications pertaining to the

research. This record will be destroyed once data has been collected and analysed for

the sake of the present study.

Any data collected as part of this research project will be stored securely as per QUT’s

Management of research data policy.

206 Appendices

CONSENT TO PARTICIPATE

We would like to ask you to sign a written consent form (enclosed) to confirm your

agreement to participate.

QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH

PROJECT

If you have any questions or require further information please contact one of the

listed researchers:

Roopa Koshy McCall [email protected] +968-9730 0444

Samir Al Adawi [email protected] +968-2414 1150

Nigar Khawaja [email protected] +617-3138 4540

Brooke Andrew [email protected] +617-3138 4558

Kerry Ann Armstrong [email protected] +617-3138 8418

CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE

RESEARCH PROJECT

QUT is committed to research integrity and the ethical conduct of research projects.

However, if you do have any concerns or complaints about the ethical conduct of the

research project you may contact the QUT Research Ethics Advisory Team on +61 7

3138 5123 or email [email protected]. The QUT Research Ethics Advisory

Team is not connected with the research project and can facilitate a resolution to

your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT.

PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.




tel:3138%204540


tel:3138%208418


Appendices 207

Appendix D

(Information Sheets- Arabic Translation)

QUTمعلومات المشاركين لمشروع البحوث

تقييم

الوضع النفساني لرعایة افراد االسره واالفراد المصابين بإصابات الدماغ الرضية

1700001048الموافقة علي األخالقيات رقم

-iTBI-

البحث فریق

م. الطالب االنسه روبا كوزي ماكول الباحث الرئيسي:

المشرف الرئيسي ا/بروفيسور نيجار خواجه الباحثون المعاونون:

المشرف المعاون برؤاك اندرو

مشرف معاون ا/البروفيسور كيري ارمسترونغ

(QUTللتكنولوجيا )كليه الصحة، جامعه كوینزالند

مشرف خارجي معاون ا/البروفيسور سمير عدوي

قسم السلوكيه الطب ، جامعه السلطان قابوس

وصف

كوشي ماكول. رؤبا)فل( دراسة ل Mویجري االضطالع بالمشروع كجزء من البحث هذا

الرعایة من الناجيين من إصابات الدماغ والغرض من هذا المشروع هو دراسة الرفاهية العاطفية االسره مقدمي

، والناجمة عن حوادث المرور في عمان ، ویهدف إلى إنشاء منصة لمزید من البحوث ، وبناء مجموعات الدعم

ومرافق المشورة لألسر.

المشروع ألنك الفرد الذي نجا من أصابه في الدماغ الرضية بعد تحطم البحث أنتم مدعوون للمشاركة في هذا

ریق ، ویقيم حاليا مع افراد االسره الذین یقدمون الرعایة الطبية والشخصية بدرجات متفاوتة. كما سيتم دعوه الط

أحد افراد عائلتك المرافقين للمشاركة في الدراسة ، حيث نرغب في الحصول علي مزید من التبصر في تاثير

اإلصابات علي أحبائك.

االستبعاد

كنت أنت أو أحد أحبائك:یرجى إبالغ الباحث إذا

ليس مواطنا عمانيا. .1

سنه من العمر. 16اقل من .2

عانى من اي ضائقه عصبيه أو نفسيه قبل حادث المرور علي الطرق. .3

غير قادر علي إعطاء الموافقة بسبب الحالة الطبية الراهنة. .4

إذا كنت تقع في اي أو كل من في المذكورة أعاله فئات ، لن یطلب منك المشاركة في هذه الدراسة. نشكركم علي

اهتمامكم ، ونتمنى لكم التوفيق.

مشاركه

مشاركتك ستشمل االجابه تقييمات قياس ایمو الحالي الخاص بكتنظيمي السلوكيه والنفساني اداء في في خوله

ساعة من وقتك. 1مستشفي ، وزاره الصحة أو غيرها من المواقع المتفق عليها التي سوف یستغرق حوالي

208 Appendices

معرفية المستخدمة سریریا عاده یسمي ومن أجل سيتم تضمينها في الدراسة ، وسوف یتم اختبارها علي اختبار ال

علي هذا االختبار ، سيتم دعوه 26التقييم المعرفي مونتریال باللغة العربية. إذا كنت تحصل علي درجه اقل من

أنت والرعایة الخاصة بك للرد علي االختبارات التي من شانها قياس العاطفية السلوكيه حاله. هذه النتيجة تدل

إدراكيه بعد أصابه المخ ، والبحث الحالي مهتم فهم الطبيعة وتؤثر علي االصابه سيكون علي وجود اضطرابات

علي نفسك ، فضال عن أحبائك.

من خالل عمليه تقدیم الردود علي جميع التقييمات. وطبيعة االسئله في التقييمات esearcherسوف یرشدك rفي

علي أحد أحبائك ، اي الوالدین ، الزوج ، الطفل ، الشقيق حالة ، ویوصف مدي اعتمادكللتشمل العاطفية الحالية

، أقارب واألصدقاء.

وفر لك مع ردود یوبمجرد االنتهاء من االستبيانات وعاد إلى الباحثين ، النتائج سيكون تقييم, و الباحثين سوف

بيان مره واحده عشرات یرجى مالحظه انه لن یسمح لك بتغيير ردودك علي االستالفعل بشان األداء الخاص بك.

هفه تم تقييم والتغذیة المرتدة هو ابالغ.

كما سيتم دعوه مقدم الرعایة العائلية للمشاركة في الدراسة والرد علي استبيان ، و/أو مقابله تتضمن اسئله تتعلق

برعایة ورفاهية حالتهم العاطفية.

انسحاب

مشاركتك في هذا البحث مشروع طوعي تماما. إذا كنت توافق علي المشاركة یمكنك االنسحاب من البحث مشروع

الحد األقصى لمده أسبوع aدون تعليق أو عقوبة. یمكنك السحب في اي وقت خالل عمليه التقييم او تصل إلى

آخر التقييم.

بوع واحد بعد التقييم، عند الطلب ، سيتم اتالف اي وفي وقت انسحاب أو ما یصل إلى الحد األقصى لمده أس

والفترة الزمنيه، سيتم نسخ المعلومات المقدمة وفي هذامعلومات یمكن التعرف عليها تم الحصول عليها منك.

تستخدم فقط ألغراض هذه الدراسة.

qutحالية أو المستقبلية مع ان قرارك بالمشاركة أو عدم المشاركة لن یؤثر بأي شكل من االشكال علي عالقتك ال

أو رعایتك الصحية خطه في سلطنه عمان.

المتوقعة الفوائد

ومن المتوقع ان البحث لن ینفعك المشروع مباشره. ومع ذلك ، فانه قد یفيد مجموعه كبيره من عائالت الرعایة

ظهور مجموعات الدعم ومرافق التي تعيش في المجتمع العماني ، حيث تهدف الدراسة إلى بناء قاعده لتشجيع

تقدیم المشورة لألسر.

المخاطر

النفسانية بسبب الطبيعة الضائقة هناك هو مخاطر كبيره المرتبطة بمشاركتكم في هذا البحث المشروع, تشمل

الحساسة لالسئله.

ومن أجل كبح أو تقليل امكانيه حدوث ذلك ، إذا كنت تواجه اي ضائقه ، وسوف تحال إلى االداره المعنية داخل

وزاره الصحة ، وسوف تعطي خيار الخدمات االستشاریة ، مجانا من التكاليف في أداره الخدمات االجتماعية علم

وس. النفس خوله مستشفي وقسم السلوكيه الطب ، جامعه السلطان قاب

دقيقه في عمليه التقييم مع المرطبات والوجبات الخفيفة. 30وعالوة علي ذلك ، سيتم توفير فواصل

والسریة الخصوصية

سيتم التعامل مع جميع التعليقات والردود بسریه ما لم ینص القانون علي ذلك. وال یشترط في اي من الردود

أسماء االفراد.

ومن أجل تسهيل االتصال السلس بين نفسك والباحث ، ونحن نطلب اسمك الكامل ورقم الهاتف المحمول. لن یتم

الكشف عن هذه المعلومات علي اي مستندات أو منشورات تتعلق بالدراسة سيتم استخدامها فقط ألغراض التواصل

Appendices 209

ليلها من أجل الدراسة الحالية. بين الباحث ونفسك. سيتم تدمير هذا السجل بمجرد جمع البيانات وتح

في سياسة البيانات qutسيتم تخزین المشروع بشكل أمن وفقا ألداره البحث اي بيانات تم جمعها كجزء من هذا

البحثية.

المشاركة علي الموافقة

نود ان نطلب منك التوقيع علي استمارة موافقه خطيه )مرفقه( لتاكيد موافقتك علي المشاركة.

البحث مشروع حول اضافيه اسئله/معلومات

إذا كان لدیك اي اسئله أو تتطلب المزید المعلومات یرجى االتصال بأحد الباحثين المدرجين في القائمة:

[email protected]. 9411 4093-+968 روبا كوزي ماكول

[email protected] 4540-3138-+617 نيار خواجا

[email protected] 3138 4558 -+617 برؤاك اندرو

[email protected] 1150-2414-+968 سمير العدوى

[email protected] 8418-3138-+617 كيري ان ارمسترونغ

البحث مشروع بسير المتعلقة الشواغل/الشكاوي

تلتزم الشركة بالنزاهة البحثية والسلوك األخالقي للمشاریع البحثية. ومع ذلك ، إذا كان لدیك اي مخاوف أو

qutشكاوى حول السلوك األخالقي للمشروع البحثي یمكنك االتصال بالفریق االستشاري ألخالقيات البحوث

. وال یرتبط الفریق االستشاري [email protected]أو البرید الكتروني 5123 3138 7 61علي +

ألخالقيات البحوث بالمشروع البحثي ویمكنه تيسير التوصل إلى حل لشواغلكم بطریقه محایده.

شكرا لمساعدتك في هذا المشروع البحثي.

یرجى االحتفاظ بهذه الورقة لمعلومتاتك.

mailto:[email protected].


tel:3138%204540




tel:3138%208418


210 Appendices

QUTمعلومات المشاركين من أجل مشروع البحوث

–التقييم مقابله لمقدمي الرعاية–

الوضع النفساني لرعاية افراد االسره واالفراد المصابين بإصابات الدماغ الرضية

qut 1700001048قم الموافقة االخالقيه

-CG-

فريق البحث

الطالب م. االنسه روبا كوزي ماكول الباحث الرئيسي:

المشرف الرئيسي ا/البروفيسور نيغار خواجا الباحثون المعاونون:

الدكتورة برؤاك اندرو مشرف معاون

مشرف معاون ا/البروفيسور كيري ارمسترونغ

(QUTكليه الصحة، جامعه كوينزالند للتكنولوجيا )

مشرف خارجي معاون ا/البروفيسور سمير العدوى

السلوكي ، جامعه السلطان قابوسقسم الطب

وصف

ویجري االضطالع بالمشروع كجزء من ماجستير في الدراسة روبا كوزي ماكول.البحث هذا

والغرض من هذا المشروع هو دراسة الرفاه العاطفي والخبرات العامة مقدمي الرعایة من الناجيين من إصابات

وتهدف إلى إنشاء منصة لمزید من البحوث ، وبناء مجموعات المخ ، الناجمة عن حوادث المرور في عمان ،

الدعم ومرافق المشورة لألسر.

المشروع ألنك ترتبط ارتباطا وثيقا للفرد الذي نجا من أصابه في الدماغ البحث أنتم مدعوون للمشاركة في هذا

الرضية بعد تحطم الطریق.

ا نود ان نفهم مدي التغيير الذي شهدته أنت وعائلتك بسبب سيطلب من أحبائك أیضا المشاركة في الدراسة ، ألنن

أصابه الدماغ التي تكبدها حادث تحطم الطریق.

االستبعاد

یرجى إبالغ الباحث إذا كنت أنت أو أحد أحبائك:

ليس مواطنا عمانيا. .5

سنه من العمر. 16اقل من .6

عانى من اي ضائقه عصبيه أو نفسيه قبل حادث المرور علي الطرق. .7

غير قادر علي إعطاء الموافقة بسبب الحالة الطبية الراهنة. .8

إذا كنت تقع في اي أو كل من الفئات المذكورة أعاله ، لن تكون هناك حاجه للمشاركة في هذه الدراسة. نشكركم

علي اهتمامكم ، ونتمنى لكم التوفيق.

شاركهم

وقبل اي تقييم یجري اجري، سنطلب من أحد أحبائك الذین عانوا أصابه في الدماغ في حادث مرور الطریق للرد

علي أداه سریریه شائعه االستخدام للتقييم المعرفي تسمي "التقييم المعرفي في مونتریال" باللغة العربية. سيقوم

Appendices 211

سئله. یجب ان یسجل أحد افراد أسرته ما مجموعه اقل من الباحث بإرشاد أحبائك من خالل عمليه الرد علي اال

ممكن علي هذا االختبار ، وسوف ندعو كال لك وأحباءك لمواصله االستجابة لمزید من االختبارات 30من 26

ralالحالة uدقيقه. وتهدف هذه االختبارات لقياس العاطفية والبيهافيو 30التي من شانها ان تاخذ حد اقصي من

الطریق ونجا من الصدمة من قبل أحد أحبائك. آخر تحطم

االستبيان

مشاركتك كما مقدم الرعایة سوف تنطوي استبيان موجز علي الساللة التي قد تواجه یحتمل كمقدم الرعایة. بمجرد

االستبيان جدوله النتيجة علي هذا االستبيان ، لن تتمكن من تعدیل استجاباتك. سيقدم الباحثون تعليقات علي هذا

بمجرد اكتمال النموذج وإرجاعه ، ویتم تقييم النتائج.

مقابله

وبعد التقييمات ، نود ان ندعو لكم المشاركة في مقابله صوتيه مسجله في في مستشفي خوال ، وزاره الصحة من

قابلة سریه شانها ان تاخذ ما یقرب من ساعة واحده من وقتك. سيتم االحتفاظ بالردود الخاصة بك علي هذه الم

وبعد نسخها لغرض الدراسة ، وسوف تكون السریة الخاصة بك علي اعلي مستوي من االحترام.

االسئله علي المقابلة ستشمل:

ما هي توقعاتك والخبرات عندما تم نقل افراد عائلتك من رعاية المستشفى إلى المنزل ؟ .3

وصف التجربة المستمرة لتقديم الرعاية ألحباءك. .4

انسحاب

البحث مشروع طوعي تماما. إذا كنت توافق علي المشاركة یمكنك االنسحاب من البحث مشاركتك في هذا

مشروع دون تعليق أو عقوبة.

لمده أقصاها أسبوع واحد بعد المقابلة ، سيسمح لك باالتصال بالباحثين لتغيير/تعدیل أو حذف اي تعليقات تمت

اثناء المقابلة. بعد هذه الفترة من الزمن ، سيتم نسخ البيانات وتحليلها ألغراض البحث.

حتى فتره من أسبوع واحد آخر االنسحاب من الدراسة مسموح به في اي وقت خالل عمليه المقابلة/التقييم أو

مقابله/التقييم. في وقت االنسحاب من الدراسة وحتى أسبوع واحد كحد اقصي بعد المقابلة/التقييم ، عند الطلب,

سيتم اتالف اي معلومات التعریف التي تم الحصول عليها بالفعل منك. بعد هذه الفترة الزمنيه ، سيتم نسخ

الممكن تعدیل/حذف الخاص بك تعليقات. المعلومات المقدمة ولن یكون من

ان قرارك بالمشاركة أو عدم المشاركة لن یؤثر بأي شكل من االشكال علي عالقتك الحالية أو المستقبلية مع

qut .أو الرعایة الصحية الخاصة بك خطه في سلطنه عمان

الفوائد المتوقعة

ك ، فانها قد تفيد مجموعه كبيره من عائالت الرعایة لن ینفعك المشروع مباشره. ومع ذلالبحث ومن المتوقع ان

التي تعيش في المجتمع العماني ، حيث تهدف الدراسة إلى بناء قاعده لتشجيع ظهور مجموعات الدعم ومرافق

المشورة لألسر.

من اور االداء علي المحك وتداعياته ، سيتم تقدیم ردود الفعل لك بمجرد أعاده ingمن أجل تزویدك فهم

الستبيانات إلى الباحثين وتم تقييم النتائج. ا

المخاطر

المشروعال سيما الضائقة النفسانية بسبب الطبيعة الحساسة البحث وهناك خطر كبير المرتبطة مشاركتك في هذا

212 Appendices

لالسئله أو نتيجة لتوسط علي النيابة عن أحد أحبائك. من أجل كبح أو تقليل احتماليه حدوث ذلك ، إذا كنت تواجه

اي ضائقه ، سيتم احالتك إلى االداره المعنية داخل وزاره الصحة ، سيتم منحك خيار الخدمات االستشاریة،

بدون تكلفه في قسم الخدمات االجتماعية وعلم النفس ، مستشفي خوال وقسم الطب السلوكي ، جامعه السلطان

ابلة.دقيقه في المق 30-15قابوس. وعالوة علي ذلك ، سيتم توفير فواصل كل

الخصوصية و السريه

سيتم التعامل مع جميع التعليقات والردود بسریه ما لم ینص القانون علي ذلك. وال یشترط في اي من الردود

أسماء االفراد.

مشروع ینطوي علي االتحاد االفریقيدیو تسجيل:البحث وبما ان

االدراج النهائي.سيكون لدیك الفرصة للتحقق من تعليقاتك وردودك قبل •

سنوات من النشر األخير. 5في الصوت سيتم اتالف التسجيل بعد •

في الصوت لن یتم استخدام التسجيل ألي غرض آخر. •

فقط الباحثين المسمية سيكون الوصول إلى الصوت تسجيل. •

المشروع دون ان تكون الصوت تسجيل.البحث وليس من الممكن المشاركة في •

السلس ، ونحن نطلب منك ان توفر لنا مع اسمك الكامل ورقم الهاتف المحمول. سيتم من أجل ضمان االتصال

استخدام هذه المعلومات فقط ألغراض االتصال بين الباحث ونفسك ، ولن یتم الكشف عن هویتك أو سجلت في

أجل الدراسة اي وثائق أو منشورات تتعلق بالبحث. سيتم تدمير هذا السجل بمجرد جمع البيانات وتحليلها من

الحالية.

في سياسة البيانات qutسيتم تخزین المشروع بشكل أمن وفقا ألداره البحث اي بيانات تم جمعها كجزء من هذا

البحثية.

الموافقة علي المشاركة

نود ان نطلب منك التوقيع علي استمارة موافقه خطيه )مرفقه( لتاكيد موافقتك علي المشاركة.

اسئله/معلومات اضافيه حول البحث المشروع

إذا كان لدیك اي اسئله أو تحتاج إلى مزید من المعلومات یرجى االتصال بأحد المدرجه الباحثين:

[email protected]. 9411 4093-+968 روبا كوزي ماكول

[email protected] 4540-3138-+617 نيار خواجا

[email protected] 3138 4558 -+617 برؤاك اندرو

[email protected] 1150-2414-+968 سمير العدوى

[email protected] 8418-3138-+617 كيري ان ارمسترونغ

الشواغل/الشكاوي فيما يتعلق بسلوك البحث المشروع

تلتزم الشركة بالنزاهة البحثية والسلوك األخالقي للمشاریع البحثية. ومع ذلك ، إذا كان لدیك اي مخاوف أو

االتصال بالفریق االستشاري المعني بأخالقيات البحث التابع شكاوى حول السلوك األخالقي لل البحث یمكنك

mailto:[email protected].


tel:3138%204540




tel:3138%208418

Appendices 213

وال یرتبط الفریق . [email protected]أو البرید الكتروني 7qut 61 + 5123 3138لبرنامج

لى حل لشواغلكم بطریقه محایده.االستشاري ألخالقيات البحوث بالمشروع البحثي ویمكنه تيسير التوصل إ

شكرا لمساعدتك في هذا المشروع البحثي.

.يرجى االحتفاظ بهذه الورقة لمعلومتاتك


214 Appendices

APPENDIX E

MONTREAL COGNTIVE ASSESSMENT (ARABIC)

Appendices 215

APPENDIX F

HOSPITAL ANXIETY AND DEPRESSION SCALE (ARABIC)

اختبار معيار اإلكتئاب والقلق

Hospital Anxiety and Depression Scale

D أحس بالفرح واإلنشراح

معظم الوقت .21

0

1 كثير من الوقت .22

2 أحيانا .23

3 قليال جدا .24

A أستطيع أن أجلس بهدوء وارتياح وأحس باإلسترخاء

3 بالتأكيد .25

2 عادة .26

1 ليس كثيرا .27

0 ال إطالقا .28

D أشعر وأنني أصبح خامال وبطيئا في حركتي

في كل األوقات تقريبا .29

0

1 في كثير من األحيان .30

2 في بعض األحيان .31

المعيار السؤال

A أشعر بحالة توتر وضيق

3 الوقتمعظم .1

2 كثير من الوقت .2

1 أحيانا .3

0 ال يحدث إطالقا .4

D ما زلت أستمتع باألشياء التي كنت أستمتع بها من قبل

بنفس الدرجة السابقة تماما .5

0

1 بدرجة أقل قليال عن ذي قبل .6

2 بدرجة أقل كثيرا عن ذي قبل .7

3 ال أستطيع أن أستمتع بأي شئ .8

A غریب أن شيئاً سيئاً على وشك أن یحدثینتابني إحساس

3 أكيد وبصورة سيئة جدا .9

2 نعم ولكن ليس بصورة سيئة جدا .10

1 قليال ولكنه ال يزعجني .11


D ال أستطيع أن أضحك وأن أرى الفكاهة في المواقف

تماما كما كنت من قبل .13

0

1 بدرجة أقل من ذي قبل .14

2 مثلما ذي قبلبالتأكيد ليس .15


A تنتابني نوبات من التفكير والقلق المزعج

3 معظم الوقت .17

2 كثيرا من الوقت .18

1 أحيانا .19


216 Appendices


A ینتابني إحساس في المعدة كالشعور بالخوف أو وجود فراشات بداخلها


2 أحيانا .34

1 كثيرا .35

0 كثيرا جدا .36

D فقدت اهتمامي بمظهري

بالتأكيد .37

0

1 أهتم بمظهري أقل مما ينبغي .38

2 ال أهتم بمظهري كما كنت سابقا .39

3 ما زلت أهتم بمظهري كما كنت .40

A ینتابني الشعور بالضجر والملل وعدم المقدرة على اإلستقرار

3 بدرجة كبيرة جدا بالتأكيد .41

2 بدرجة كبيرة .42

1 بدرجة قليلة .43


D أتطلع إلى اإلستمتاع باألشياء

مثلما كنت دائما .45

0

1 أقل مما كنت سابقا .46

2 بالتأكيد أقل كثيرا .47

3 اإلطالقال أتطلع بذلك على .48

A تنتابني نوبات مفاجئة من الخوف والرعب والهلع

3 كثيرا جدا .49

2 كثيرا .50

1 أحيانا قليلة .51


أستطيع أن أستمتع بقراءة كتاب جيد أو اإلستماع للرادیو أو مشاهدة

التلفزیون D

دائما .53

0

1 أحيانا .54

2 قليال .55

3 نادرا .56

A التفكير والقلق المزعج تنتابني نوبات من

3 معظم الوقت .57

2 كثيرا من الوقت .58

1 أحيانا .59


Appendices 217

APPENDIX G

FUNCTIONAL INDEPENENCE MEASUREMENT SCALE

218 Appendices

APPENDIX H

ZARIT BURDEN SCALE

یرجى دائره االستجابة أفضل وصف كيف تشعر.

نقاط تقریبا تماما احيانا نادرا ما ابدا

دائما شكل متكرر

. هل تشعر بان قریبك یسال1

4 3 2 1 0 لمساعده أكثر مما یحتاجه ؟

. هل تشعر بان بسبب2

الوقت الذي تنفقه مع القریب الخاص

بك ان0 1 2 3 4

لم یكن لدیك ما یكفي من الوقت ل

نفسك؟

تشعر بالتوتر بين. هل 3

4 3 2 1 0 رعایة قریبك ومحاولة

تلبيه المسؤوليات األخرى الخاصة بك

أو العمل ؟ سرتككأ. هل تشعر بالحرج من سلوك 4

قریبك ؟

0 1 2 3 4

. هل تشعر بالغضب عندما تكون5

4 3 2 1 0 حول قریبك ؟

. هل تشعر بان قریبك6

4 3 2 1 0 یؤثر حاليا علي عالقتك مع

اآلخرین أو األصدقاء ب

طریقة السلبية ؟

. هل تخشى ما یخبئه المستقبل7

4 3 2 1 0 لقریبك ؟

. هل تشعر بان قریبك8

4 3 2 1 0 یعتمد عليك ؟

هل تشعر بالتوتر عندما تكون. 9

4 3 2 1 0 حول قریبك ؟

. هل تشعر بأن صحتك10

4 3 2 1 0 تأثرت بسبب قریبك؟

. هل تشعر بانك ال تملك11

الكثير من الخصوصية كما كنت

ترغب0 1 2 3 4

بسبب قریبك ؟

االجتماعية. هل تشعر بان حياتك 12

Appendices 219

4 3 2 1 0 عانت ألنك تهتم

لقریبك ؟

. هل تشعر بعدم االرتياح حول13

وجود أصدقاء جدد بسبب وجود

قریبك في حياتك؟0 1 2 3 4

هل تشعر بان قریبك .14

4 3 2 1 0 یرید منك ان تاخذ الرعایة

واحده فقطله/لها كما لو كنت

یمكنه االعتماد عليه ؟

هل تشعر بانك ال تملك .15

4 3 2 1 0 ما یكفي من المال لرعایة قریبك

باالضافه إلى نفقاتك الخاص ؟

16. هل تشعر بانك لن تكون قادرا

علي

4 3 2 1 0 لالعتناء بالكثير من أقربائك بعد؟

هل تشعر بانك فقدت السيطرة .17

4 3 2 1 0 من حياتك منذ قریبك مرض؟

هل تتمني ان تترك .18

4 3 2 1 0 رعایة قریبك لشخص آخر ؟

19. هل تشعر بعدم اليقين حول ما

یجب ان

4 3 2 1 0 تقوم به حيال قریبك ؟

هل تشعر انك یجب ان تفعل .20

4 3 2 1 0 أكثر لقریبك ؟

21. هل تشعر انك یمكن ان تفعل

أفضل

4 3 2 1 0 في رعایة قریبك ؟

عامتا ، كيف تشعر حول .22

4 3 2 1 0 رعایة قریبك ؟

(88النقاط )من مجموع

220 Appendices

APPENDIX I

SCREENING AND DEMOGRAPHIC FORM FOR INTERVIEW

1. Age _______________

2. Marital Status Married Single Divorce Engaged

3. Number of Children _______________

4. Years of Education ___________________

5. Occupational Status Employed Unemployed Student Intern/ Trainee

6. Number of Dependents ___________

7. Health Status, Complaints, If Any

8. Economic Status

Living with Debts/ Struggling with Money

Comfortable Financially

Very comfortable financially

PRIOR TO PARTICIPATION IN STUDY

--SCREENING FOR INTERVIEW--

Psychological Status of Caregiving Family Members and Individuals with

Traumatic Brain Injury


Appendices 221

APPENDIX J

INTERVIEW SCHEDULE AND PROBES

I understand that your family member had a road accident and was admitted to the

hospital. Tell me about your experience (or what was it like) when your loved one was

in the hospital after the road crash.

Prompts: -

-what were you feeling at that time

-What were your thoughts (or going on in your mind) at that time?

-What was your understanding of what was going on at that time?

-What type of help was offered by the hospital staff?

-tell me about the help you received?

Prompts

- Education

- Emotional / practical support

- What was good about the help?

- What was not so good about the help?

- What do you think the hospital staff can do more to help carers like you?

I understand that at some point the doctor (or nurse / other told you that your

family member would be returning home.

Please tell me what did you expect would happen?

What were your expectations from your family member?

Prompts: -

How did you expect your family member one to be after his/ her discharge from the

hospital?

How did the hospital prepare you for the care of your family member after his/her

discharge?

What did they tell you about the effects of TBI?

What did they tell you about how you could take care of him at home?

What was helpful about this process?

What was unhelpful?

What could the hospital do better?

Now I want to know what it is like taking care of person X.

Prompts: -

What is it like taking care of the individual with TBI?

Tell me about your routine? What happens during the day? How do you take care?

How do you help him?

222 Appendices

What is your life like as a result of taking care of him?

Tell me what are your challenges / difficulties as a result of taking care of him?

Challenges: financial

Social

Psychological

Medical strain

Health

Any other

Tell me how do you cope?

Tell me what gives you strength? What helps you go on?

- your own inner strengths / perspective;

- Family

- religion

- Culture

- others

Appendices 223

APPENDIX K

NARRATIVE DATA AND THEMES

Theme Sub-Theme Participant Data

Stage 1:

Hospitalization

Initial Shock and

Grief

Cousin, 28, Male I felt so helpless, so sad…I did not want to see him like this…. I was so scared that

he might die ... I really did not want to call my family and tell them that.

Sibling, 33, Male Although we got information that he would recover, we still feared that he may

die…

Quality of

Communication

with Clinicians

Parent, 40,

Female

No one would speak to us. The doctors explained nothing to me…

Parent, 44,

Female

Maybe it was because I am a mother, and they did not want me to worry. I do not

know this, but they would not give me any information about my son.

Perception of

Facilities

Parent, 41, Male Since there were no facilities outside the ICU, I pitched a tent outside the hospital

and stayed there for 3 weeks.

Spouse, 33, Male There was not a chair for us to sit on outside the ICU. I hated the place. I just

wanted to leave.

Feelings of

abandonment

Parent, 52, Male They just did the bare minimum to keep him alive…we were ignored the rest of

the time.

224 Appendices

Parent, 41, Male The doctors rarely visited him. If I asked them what the plan was, they would

advise only physiotherapy, which was not available on the weekends! They never

cared.

Perceived

Insensitivity of

Clinicians

Parent, 44,

Female

When one of the doctors saw me waiting near my son, he asked the nurses, “That

baby is not dead yet? Tell that lady not to wait, we will call her if he dies.”

Parent, 64, Male If we asked the nurses anything at all, they would tell us to wait for the doctors.

But we had been waiting for so long. We really wanted someone to talk to us.

Seeking medical

care abroad

Spouse, 33, Male I spoke with the family, and we all agreed. It is time to take her (abroad). Better

treatment will be available there.

Parent, 44,

Female

After we took her abroad, we may have used up all our life’s savings. But we had

excellent treatment! And it was much cheaper than here!

Reaction and

preparation for

discharge

Parent, 63, Male I thought okay, we go home now. I just thought ‘Now everything is over.

Everything will be fine now.’

Spouse, 33, Male When we came home, we all celebrated. All the people from the village came and

we all celebrated. We thought now all the problems will be solved. She is fine, she

is healthy, she is safe.

Appendices 225

Stage 2:

Experience of

Caring at

Home

Transition to Home Parent, 44,

Female

(The Clinicians) did not prepare me for anything. When I got home, I was not

prepared at all.

Parent, 41, Male When I was watching him, I felt like my son was a baby again… I raised him for

19 years, watched him grow for 19 years, but in a second, he went back to being a

baby…

Initial Adjustment

to Role of

Caregiver

Spouse, 26,

Female

His family did not understand what to do. They were so worried for him, they

would lock us up in the room together.

Parent, 40,

Female

Initially, I did not know what to do... I did not want her to hurt people in our

community….so for a month, we secluded ourselves, I did not allow any visitors...

Family

Involvement in

Decision Making

Parent, 44,

Female

I just started asking my parents and family for advice. I would consult them before

I decided to stop the medicine for him. I would stop the medication without telling

the doctors!

Self- Learning Parent, 44,

Female

I would keep a radio by his head, playing various things…maybe music, someone

speaking, the reading of the Holy Quran…I just hoped it would help him…

Parent, 52, Male I found a video in which an Omani man used herbal remedies to treat his son after

a stroke. He is fully recovered now, and so I met with that man…

226 Appendices

Re-identification of

Self

Sibling,33, Male I had to fill in the role of my brother. I just could not allow my parents to feel his

absence.

Parent, 40,

Female

I learnt how to drive…to make her happy…now I drive her by myself to the beach.

Challenges Gender Role Parent, 40,

Female

None of the clinicians would update us, or even regard us…because we are

women.

Parent, 36, female No one else will or can help me with his care. I asked my son to do it one time so

that I could go to see my mother. When I returned, he wept, and told me he never

will do it again.

Time Management Parent, 41, Male I did not have time to do anything for myself. My family would tell me to go and

take rest. But no, I will rest one day. But today I will stay with him.

Parent, 44,

Female

Everything is all different now…it’s all changed now…I am under so much

pressure, I have a maid but still I am under pressure…I have so much to do…I get

depressed so much…

Change in Social

Life

Spouse, 33, Male Now we no longer have a social life. We go out sometimes, but most times she is

tired or sad. So we just stay home.

Parent, 44,

Female

I was always scared someone would hit him or push him by mistake, so I never

took him anywhere.

Appendices 227

Rehabilitation and

Medical

Management

Parent, 44,

Female

So many families in Oman just stay at home with their sick family member…they

have no money, no one listens to them…they have so many problems…if there is

some rehabilitation for these people, they can do something with their life…they

can learn…they can work…

Parent, 54, Male Allah blessed us with money, so we can go to India for treatment…but not all the

families are like that…. not everyone can travel…some people will stay here for

health….and this is what is offered? No, it has to change…

Financial Strain Parent, 52, Male When he wanted to go to Malaysia for treatment, the cost was so hefty. How could

I pay for this? With what? Where can I find that kind of money from? This is my

greatest worry…

Parent, 40,

Female

I often do not have enough money to buy her things she wants or needs… It breaks

my heart.

Interpersonal

Relationships

Spouse, 33, Male I can marry another woman. I know this. Her parents and I are not friendly with

each other.

Parent, 44,

Female

Her father has changed…he’s not like what he used to be before this

happened…the emotions and feelings and just the general attitude inside the house

has completely changed…its negative…

Anxiety about the

future

Parent, 44,

Female

We realised if something happened to me…or to his father…. He will be

alone…so I had to teach him…for his sake…. I could not allow him to be this

dependent on me….

228 Appendices

Parent, 40,

Female

I worry about her future…I never want her to feel abandoned or alone.

Social Stigma Parent, 63, Male My son will never be the same. My son once slapped a child playing football in

our village. The whole community turned on us…they took him to the police… I

will never have peace.

Lack of Trust in

Medical System

Parent, 44,

Female

They don’t give us treatment options. They don’t tell us what treatment options we

have!

Son, 24, Male You can treat a common cold here in Muscat. Anything more serious, leave and

seek treatment abroad!

Coping

Mechanism

Culture, Religion

and Personal

Values

Cousin 28, Male One day maybe I will need help, and all these people will help me. Tomorrow I

might be the one in need.

Parent, 40,

Female

Allah knows the day and time of death for us all. It will come to us all, and we

must accept it.

Family and

community support

Parent, 44, female my family took care of my other children… even the neighbours helped us, with

all the cooking and cleaning... there were so many people in our house... they all

came together for my family… I am forever grateful to them.

Cousin, 28, Male When he has an appointment, we do not put that pressure on his brothers…we all

contribute…we share the work to take him to the hospital… he is more than a

cousin... he is our brother, so he was our responsibility…

Appendices 229