roopa koshy mccall b.sc. psychology, women’s christian … · 2020-05-14 · understanding family...
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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
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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
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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.
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Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash
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
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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
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Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash
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
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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
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Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash
In Oman vii
List of Abbreviations
TBI Traumatic Brain Injury
RTC Road Traffic Crash
ICU Intensive Care Unit
OPD Outpatient Department
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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
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Understanding Family Caregiving for Individuals with Traumatic Brain Injury after a Road Traffic Crash
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
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Chapter 1: Introduction
1
Chapter 1: Introduction
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
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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
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Chapter 1: Introduction
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
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4 Chapter 1: Introduction
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
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Chapter 1: Introduction
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
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6 Chapter 1: Introduction
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
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Chapter 1: Introduction
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.
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8 Chapter 1: Introduction
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
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Chapter 1: Introduction
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).
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10 Chapter 1: Introduction
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.
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Chapter 1: Introduction
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
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12 Chapter 1: Introduction
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 &
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Chapter 1: Introduction
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,
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14 Chapter 1: Introduction
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
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Chapter 1: Introduction
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
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16 Chapter 1: Introduction
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
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Chapter 1: Introduction
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.
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Chapter 2: Literature Review
19
Chapter 2: Literature Review
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
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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
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Chapter 2: Literature Review
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
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22 Chapter 2: Literature Review
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
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Chapter 2: Literature Review
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,
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24 Chapter 2: Literature Review
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, &
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Chapter 2: Literature Review
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
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26 Chapter 2: Literature Review
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,
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Chapter 2: Literature Review
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
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28 Chapter 2: Literature Review
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.,
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Chapter 2: Literature Review
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
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30 Chapter 2: Literature Review
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
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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
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32 Chapter 2: Literature Review
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,
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Chapter 2: Literature Review
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).
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34 Chapter 2: Literature Review
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
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Chapter 2: Literature Review
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
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36 Chapter 2: Literature Review
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).
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Chapter 2: Literature Review
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
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38 Chapter 2: Literature Review
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
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Chapter 2: Literature Review
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;
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40 Chapter 2: Literature Review
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;
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Chapter 2: Literature Review
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
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42 Chapter 2: Literature Review
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.
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Chapter 2: Literature Review
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
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44 Chapter 2: Literature Review
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
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Chapter 2: Literature Review
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
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46 Chapter 2: Literature Review
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
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Chapter 2: Literature Review
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.
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48 Chapter 2: Literature Review
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?
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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
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50 Chapter 2: Literature Review
(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
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Chapter 2: Literature Review
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
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52 Chapter 2: Literature Review
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.
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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
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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
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Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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56 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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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
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58 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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)
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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;
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60 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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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).
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62 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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).
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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
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64 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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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).
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66 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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).
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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
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68 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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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)
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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
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72 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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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
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74 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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76 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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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
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78 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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,
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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
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80 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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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
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82 Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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
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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.
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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
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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
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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
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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
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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.
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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
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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
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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,
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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.
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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
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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
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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
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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
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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
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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
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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
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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,
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Chapter 3: Study 1- Examining the Burden of Family Caregivers in Oman of Individuals with Brain Injury post
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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.
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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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
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104 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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
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106 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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%)
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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.
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108 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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.
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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
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110 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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‘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
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112 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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.
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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
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114 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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(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
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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
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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
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130 Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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
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Chapter 4: Study 2- Understanding Caregiving: A Qualitative Study on the Experiences of Caregivers of
Individuals with TBI in Oman
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.
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Chapter 5: General Discussion
133
Chapter 5: General Discussion
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
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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
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Chapter 5: General Discussion
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
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136 Chapter 5: General Discussion
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.
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Chapter 5: General Discussion
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
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138 Chapter 5: General Discussion
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
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Chapter 5: General Discussion
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
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140 Chapter 5: General Discussion
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.
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196 Appendices
Appendices
Appendix A
Letter Granting Access to Archived Data
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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.
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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.
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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.
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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
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Appendices 201
facilities for families.
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
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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.
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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
QUT Ethics Approval Number 1700001048
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
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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.
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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
facilities for families.
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.
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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.
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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
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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
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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.
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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
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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
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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
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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
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214 Appendices
APPENDIX E
MONTREAL COGNTIVE ASSESSMENT (ARABIC)
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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
0 ال إطالقا .12
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
3 ال إطالقا .16
A تنتابني نوبات من التفكير والقلق المزعج
3 معظم الوقت .17
2 كثيرا من الوقت .18
1 أحيانا .19
0 قليال جدا .20
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216 Appendices
3 ال إطالقا .32
A ینتابني إحساس في المعدة كالشعور بالخوف أو وجود فراشات بداخلها
3 ال إطالقا .33
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
0 ال إطالقا .44
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
0 ال إطالقا .52
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
0 قليال جدا .60
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Appendices 217
APPENDIX G
FUNCTIONAL INDEPENENCE MEASUREMENT SCALE
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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
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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
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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
QUT Ethics Approval Number 1700001048
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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?
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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
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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.
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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.
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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…
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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.
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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….
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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…
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Appendices 229