exploring the relationship between grandparents and their...

Exploring the Relationship between Grandparents and Their Grandchild who has a disability

Sandra Woodbridge

Bachelor of Social Science QUT - 1993 Master of Arts (Research) QUT - 2001

School of Design Faculty of Built Environment & Engineering

Queensland University of Technology Brisbane Australia

A thesis submitted for the degree of Doctor of Philosophy of the Queensland University of Technology

2010

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KEYWORDS

grandparent, children with disability, emotional experiences, families, relationships, roles, identity, sustainability, latent grandparent identity, functional grandparent identity, intergenerational relationships

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ABSTRACT

This thesis reports on the findings of a study which sought to explore the relationship between grandparents and their grandchild who has a disability. In contrast to previous studies, it presents the grandparents‟ perspective on the roles and relationships they maintain within their families and adopts a qualitative approach to identify the meanings, symbols and beliefs grandparents attribute to their experiences.

Grandparents have played and continue to play an important role in the lives of many families, contributing both symbolic and instrumental support to their grandchildren. Changing life expectancy for older people has meant that many more grandparents and grandchildren now have the opportunity to participate in meaningful interactions and to develop strong relationships. In the future, this will be true for great grandparents and in some cases great great grandparents as well. This presents a number of challenges to all concerned as family members negotiate the often complex arena of family life in the 21st Century. Realizing that a grandchild has a disability adds another degree of complexity to the negotiation of roles and responsibilities of grandparents within families. By focussing on grandparents experiences when their grandchild has a disability, this research both explores a knowledge gap in the current literature and more practicably, will inform both grandparents and their families as they negotiate these challenges. This research makes a significant contribution to knowledge in this area by exploring grandparents‟ views on the differences in the relationship they have with their typically developing grandchildren and their grandchild with a disability; the impact having a grandchild with a disability had had on their grandparent identity and whether it impacted on quality of life.

As well as reporting on the aims of the study, the papers presented in this thesis report on the key topics and themes identified in the analysis of the transcribed interviews conducted with 22 grandparents whose grandchild has a disability. Article 1 presents an overview of the literature which informs current knowledge in relation to grandparents, presenting a historical and theoretical perspective. Additionally, it presents previous literature which discusses the roles and styles grandparents adopt thus providing a framework which is later used to examine the roles and styles adopted by the grandparents in the study.

Article 2 addresses the emotional responses grandparents in the study experienced as they grandparented a child with a disability. Comparing these emotions to that of a roller coaster ride, ranging from absolute sadness and grief to pride and delight, these findings highlight their unique experiences and will be reassuring for other grandparents who experience similar emotional responses.

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Article 3 discusses from the grandparents‟ perspective, how having a grandchild with a disability has impacted on their family. Whilst reporting on the day to day challenges of competing family commitments and conflict, a number of grandparents in this study also commented that the experience had made them closer as a family and that there had been significant changes in how some individual family members now viewed people with disability.

Article 4 explores the impact having a grandchild with a disability may have on the grandparents‟ sense of identity and enactment of the grandparent role, utilising Neugarten and Weinstein‟s (1964) classic grandparenting styles and Kornhaber‟s (1996) concepts of latent and functional grandparent identity as a basis for comparison. It provides important insight into grandparenting identity when a child has a disability, suggesting that the grandparenting experience and role enactment may be universal with only the context and delivery varying.

In summary, this thesis confirms the valuable role grandparents play in the lives of grandchildren who have a disability and their families. It identifies a number of implications and makes recommendations for future research and practice.

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DECLARATION

Statement of Original Authorship

I hereby certify that this has not previously been submitted to meet requirements for an award at this or any 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 in the thesis itself. ______________________________________________ Sandra Woodbridge December 2010

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PUBLICATIONS AND CONFERENCE PRESENTATIONS

PUBLICATIONS

Paper 1 Woodbridge, S. (2008). Sustaining Families in the 21st Century: The role of Grandparents. International Journal of Environmental, Cultural, Economic & Social Sustainability, 4 (2), 61-68. Paper 2 Woodbridge, S., Buys, L., & Miller, E. (2009). Grandparenting a child with a disability: An emotional rollercoaster. Australasian Journal on Ageing, 28 (1), 37-40.

Paper 3 Miller, E., Buys, L., & Woodbridge, S. (28/7/10 Accepted with minor revisions: 19/08/10 – resubmitted to Journal of Intellectual Disability Research). Impact of disability on families: A grandparent‟s perspective

Paper 4

Woodbridge, S., Buys, L., & Miller, E. (Accepted with minor revisions: 2/12/10 re-submitted to Journal of Aging Studies) „My Grandchild has a disability‟:

Impact on grandparenting identity, roles and relationships.

CONFERENCE PRESENTATIONS

Australian Association of Gerontology Annual Conference – Melbourne. Australia 2004. So You‟re a Grandparent – Towards an understanding of the role of Grandparents in the 21st Century. 4th International Conference on Environment, Cultural, Economic and Social Sustainability. Kuala Terranganu, Malaysia. 2008. Sustaining Families in the 21st Century: The role of Grandparents. International Association of Gerontology and Geriatrics Congress. Paris. France. 2009. Well you just get on with it – Examining the impact of grandparenting a child with a disability.

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TABLE OF CONTENTS

KEYWORDS I

ABSTRACT III

DECLARATION V

PUBLICATIONS AND CONFERENCE PRESENTATIONS VII

TABLE OF CONTENTS IX

ACKNOWLEDGEMENTS XI

CHAPTER 1: GENERAL INTRODUCTION 1

DESCRIPTION OF THE RESEARCH PROBLEM INVESTIGATED 1 THE EVOLVING ROLE OF GRANDPARENTS 1 CONTEMPORARY GRANDPARENTS, GRANDCHILDREN AND FAMILIES 3 THE EXPERIENCE OF GRANDPARENTING A GRANDCHILD WITH A DISABILITY 5 OVERALL PURPOSE AND SIGNIFICANCE OF THE RESEARCH 7 SPECIFIC AIMS OF THE STUDY 8 METHODOLOGY 8 PARTICIPANTS 9 PROCEDURE 10 DATA MANAGEMENT AND ANALYSIS 11 ACCOUNT OF RESEARCH PROGRESS LINKING RESEARCH PAPERS 12 RESEARCH LOGIC AND THESIS STRUCTURE 12

CHAPTER 2: PAPER 1 15

SUSTAINING FAMILIES IN THE 21ST CENTURY: THE ROLE OF GRANDPARENTS 15


GRANDPARENTING A CHILD WITH A DISABILITY: AN EMOTIONAL ROLLERCOASTER 33


IMPACT OF DISABILITY ON FAMILIES: A GRANDPARENT’S PERSPECTIVE 43


MY GRANDCHILD HAS A DISABILITY: IMPACT ON GRANDPARENT IDENTITY, ROLES AND RELATIONSHIPS 57

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CHAPTER 6: GENERAL DISCUSSION AND RECOMMENDATIONS 75

GENERAL DISCUSSION 75 SIGNIFICANCE OF THE RESEARCH 75 THEORETICAL IMPLICATIONS 79 IMPLICATIONS FOR CONTEMPORARY FAMILIES AND SOCIETY 81 GRANDPARENTS – THE CRITICAL SUPPORT PERSON IN THE FAMILY 82 THE EMOTIONAL ROLLERCOASTER 83 OTHER COPING STRATEGIES 84 REDEFINING THE ‘GRANDPARENT’ IDENTITY 85 GRANDPARENTS AS INDIVIDUALS 88 PRACTICAL IMPLICATIONS 88 PRACTICAL IMPLICATIONS - FOR PARENTS 89 PRACTICAL IMPLICATIONS - FOR HUMAN SERVICE PROFESSIONALS 90 IMPLICATIONS FOR AN AGEING SOCIETY AND GROWING NUMBERS OF GRANDCHILDREN WITH DISABILITIES 91 LIMITATIONS OF THE STUDY 91 RECOMMENDATIONS 92 NEED FOR FUTURE RESEARCH 92 RECOGNITION AND SUPPORT 93

LIST OF APPENDICES 95

APPENDIX A: LETTER TO ORGANISATIONS 97 APPENDIX B: ETHICS INFORMATION PACK 99

REFERENCES 103

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ACKNOWLEDGEMENTS

Firstly, I wish to express my appreciation to the grandparents who participated in this study. I feel privileged to have been able to share your thoughts and feelings around your grand-parenting experiences. I am in awe of your courage, your strength and your love for your families, and for the contribution you are making to the lives of all your grandchildren. As well as the grandparents in the study, I wish to express my gratitude to my principle supervisor Professor Laurie Buys, whose wisdom, compassion and support has been integral to my achieving this milestone. I have been very fortunate to have access to her knowledge, her guidance and her friendship over many years and for that I will always be grateful. Dr Evonne Miller, as Associate Supervisor, has also contributed greatly to my capacity to complete this Doctorate. Her fresh, enthusiastic approach has kept me motivated and on track through some challenging times. Thank you both. I also wish to thank Associate Professor Jayne Clapton and my colleagues in the School of Human Services and Social Work for their support and encouragement. Our casual corridor conversations challenged my thinking and enabled me to focus on the tasks at hand. Thank you, I am most grateful. It would have been impossible to have completed this journey without the love and support of my family and close friends. To my children, Kylie, Aaron and Ashley and their partners, Gary, Nicole and Anne-mieke, thank you for inspiring me, for your love and for your encouragement. To my beautiful grandchildren, Maddison, Samantha, Mia, Rylie and Bella, thank you for being such lovely distractions in what seemed at times to be a somewhat chaotic life. To my brother David and my sisters, Wendy, Tracey and Linda and their families, thank you for your love and support. I would not have made it this far without you all. To my many friends who have been there for me over the years it has taken for me to reach this goal, words cannot express my appreciation of your love, your encouragement and your wisdom. I have appreciated your honesty, your feedback and your understanding, and I look forward to sharing many more years of fun and laughter with you all. Finally, I wish to acknowledge my parents, Stan and Miriam who have been there for me through the many ups and downs of this journey. Although they have had their own challenges during this period, they were always there to offer their unconditional love, and support. Thanks Dad for transcribing all the interviews, and Mum for keeping the sustenance going when the cupboards were a little bare. Your strength has been inspirational and words cannot express my love and gratitude to you both. I am truly blessed.

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CHAPTER 1: GENERAL INTRODUCTION

Description of the research problem investigated

The Evolving Role of Grandparents

Grandparenthood has been a phenomenon of human existence

throughout the ages, from the times of our tribal ancestors to the modern

day. Every time a child is born, there is the potential to create a grandparent

and an attachment, both physical and emotional, between the generations

(Kornhaber, 1996). The mere fact that a biological link is created confers the

formal title of grandparent, but it is the individual grandparent who

constructs his or her own particular version of this role. Becoming a

grandparent means different things to different people, as grandparents are

not an homogenous group of individuals but a diverse group who may or

may not have or desire close relationships with their families, including their

grandchildren (Kornhaber, 1996).

However, many of the current generation of grandparents have had

little first hand experience themselves interacting with a “grandparent”.

Traditionally, it was not unusual for children to have little recollection of their

grandparents, as they often died before they were born or before they were

old enough to form lasting memories of them. Those who did recall their

grandparents often spoke of frail elderly people, unable to have a

meaningful impact on the lives of their grandchildren (Falk & Falk, 2002;

Lumby, 2005). Very rarely do individuals recall their grandparents

interacting on a day to day basis with grandchildren, even if they co-resided

with them. For many children, therefore, their only experience of

grandparents was what they saw portrayed in picture books and children‟s

literature of the time (Falk & Falk, 2002). Unfortunately, this did little to

provide a realistic picture of the possible roles and relationships that could

exist between generations.

Even today, images in the media, children‟s books and magazines often

give the impression that grandparents have little to contribute to their

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grandchildren‟s lives, to the lives of their children or to society as a whole.

The stereotypical picture presented is often one of frailty, of burden,

negativity and sometimes considerable animosity. For example, research by

Kemp (2004) suggests that many parents do not think to include

grandparents in their families‟ activities because they believe that they are

too old and are not interested in their grandchildren‟s lives. This picture

belies the truth: grandparents have played (and continue to play) a

significant role in the lives of families throughout the world, in many different

cultures, and in many different ways (Falk & Falk, 2002).

In addition, the structure of families is also changing with the result

that grandparents are no longer in short supply. For example, at the

beginning of the 20th century, approximately 25% of newborns had both

paternal and maternal grandparents still living. By 2000, approximately 66%

of newborns have two sets of grandparents (Falk & Falk, 2002). In fact,

changing fertility and mortality rates suggest that, in the future, it will be

grandchildren that will actually be at a premium (Cherlin & Furstenberg).

Changing family structures, such as same sex couples, single parent families

and „blended‟ families, will also be more common in 21st century families.

Families will be smaller in size, and the age of first time parents will be much

older than was typical in the 1930‟s to 1960‟s (Weston, Stanton, Qu &

Soriana, 2001). This change to the family structure will influence both the

way older people interact with their families and the way families interact

with them.

Statistically, the number of people 65 years and over in Australia is

projected to increase from 12% currently to more than 25% by the year

2050, and this is true for many developing countries (United Nations, 2002).

These changes pose a number of questions: what will this demographic

change mean for individuals, families and society in general? What policy

responses will be needed? How will families negotiate the complex

relationships that will result from significant changes to the structure of

families that may include three or four or maybe even five generations of

grandparents, great grandparents and perhaps great-great grandparents? It

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is argued that this growth in multi-generational families will result in

individuals (usually women), being called upon to care for both their children

and their parents and perhaps grandparents. This phenomenon is commonly

referred to as creating the „sandwich generation‟ in which it is important that

family members are able to contribute to ensuring the care and support of all

generations (Lymer, Percival & Harding, 2006). In the last two decades,

growing numbers of Australians have become first time grandparents whilst

still in their late forties (McLeish, 2004). At the same time, with average life

expectancy in Australia increasing to 83 years for women and 79 years for

men, many of these individuals will fulfil their grandparent role for between a

third to a half of their lives (AIHW, 2009). Thus, understanding the role

grandparents play in contemporary families is important.

Contemporary Grandparents, Grandchildren and Families

However, just as the stereotypical portrayal of grandparents in the past

failed to present the complete picture, the current portrayal of “baby

boomer” grandparents also fails to encompass the diversity that exists within

this group. Born between the years of 1944-1963, contemporary “baby

boomer” grandparents are often using their good health and financial

security to assist their children and become more involved with their

grandchildren. For example, tourist and holiday resorts that provide facilities

which cater for three generations rather than two, are actively capitalizing on

this growing market (Zullo, 2002). Grandparents increasingly play a

significant role in their grandchildren‟s daily lives, particularly in terms of

everyday activities and facilitating opportunities for learning and exploration.

For example, Jane and Robbins (2007) documented the large number of

grandparents that engage in the care of their grandchildren, often teaching

young children (without even realizing it) about nature, science and

technology through simple, shared everyday activities such as household

chores (e.g. cooking, gardening), visits to the beach and using a computer.

Yet, whilst contemporary grandparents are more likely to be engaged in

their grandchildren‟s lives than ever before, they are a diverse group of

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individuals who balance the roles and responsibilities of grandparenting with

their own dreams and aspirations. Schewe (2002) argues that “baby

boomers” are making plans to use their health and financial wellbeing for

their own needs and are increasingly accommodating their grandparenting

roles from a distance. In the 21st century, technology such as email,

internet, voice over internet phones (such as skype) and digital photography

means that the geographic distance between grandparents and

grandchildren is no longer a deterrent to the development of strong

relationships between the generations. For example, in Malaysia, Jomhari

(2007) documented the positive outcomes of a computer-mediated

communication system that facilitated interactions between grandparents

and grandchildren. However, it should be noted that there is still a great

deal of diversity in the reported roles and relationships grandparents have

with their grandchildren through technology (Barnett, Buys & Adkins, 2000;

Cameron, Marquis & Webster, 2001).

Whether discussing past or present grandparents, it is important to

acknowledge that although most grandparents desire a strong involvement

with their families, grandparents are not an homogenous group of people.

Grandparents are a diverse group of individuals, with their own particular

view of what a grandparent is and what a grandparent does. Grandparents

do not exist in isolation, as being a grandparent is not the only role they

play, they are parents, grandparents, workers, members of extended

families, local communities, neighbourhoods, cities and countries. In fact,

most grandparents must negotiate their roles through a complex system of

relationships, often unsure of where to place themselves or where they fit

(Ochiltree, 2006). In Australia, there are no specific policies which relate to

grandparents although some attention is recently being paid to issues such

as access to family benefits, and legal aid for grandparents who are denied

access to their grandchildren. Changes in government pension policies which

extend the age of eligibility to 70 years will present additional challenges to

grandparents who anticipate using their retirement years as a reward for the

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many years of providing for their families and as a time to be available to

offer physical and emotional support to their grandchildren (Salt, 2007).

Just as grandparents are diverse, however, so are grandchildren. Rapid

societal change in the twenty-first century means that grandchildren grow up

in families that may be constructed differently than in the past. Non-

traditional family arrangements, arising primarily from increases in single

parent households, divorce, „blended‟ families, and same sex couples, are

now more common. However in Australia, the majority of children (81%)

live in a „traditional‟ two-parent household (ABS, 2004a). An increasing

number of grandchildren have their grandparent/s as their primary

caregiver/s, because the death, illness, neglect, incarceration or substance

abuse of their birth parent/s places children at severe risk. In fact, in

Australia 31,000 children aged between 0-17 years reside with their

grandparents on a permanent basis (ABS, 2008a). Many of these children

have been traumatized as a result of their experiences and may be violent,

have eating disorders, learning difficulties and other challenging behaviours

(Copen, 2006). Grandparents who take on this caring role are often

unprepared for the multiple challenges they face, with a number of studies

documenting significantly higher stress levels experienced by these

grandparents compared with non-parenting grandparents (Kelley, Whiley,

Sipe & Yorker, 2000; Musil, 1998). Navigating these non-traditional and

often complex family arrangements can be very challenging for

contemporary grandparents, who must re-examine their prior expectations

of being a grandparent and renegotiate these roles and relationships with

both their grandchildren and other family members.

The Experience of Grandparenting a Grandchild with a Disability

Some grandparents experience the challenge of being a grandparent of

a grandchild with a disability. These children may have a disability as a

consequence of congenital abnormalities which are obvious at birth or as a

result of trauma or accident later in the child‟s development. In Australia,

13% of families have a child aged between 0 and 14 years who has a

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disability (ABS, 2008a). These children typically live at home with their

families, receiving varying degrees of formal and informal support (Seligman

& Darling, 1997).

Grandparents are often a very significant form of informal support for

these families, with 10% of primary carers in Australia reporting that the

child‟s grandparents provide assistance and share in the caring

responsibilities (ABS, 2008a). Unfortunately, to date, very little is known

about grandparents‟ experiences when their grandchild has a disability.

What roles and relationships do grandparents adopt within these families

and with their grandchild? How do their interactions with a grandchild with a

disability differ from their interactions with their non-disabled, typically

developing grandchildren (Innes & Diamond, 1999; Krumins, 2009)? How

does this experience of disability impact on a grandparent‟s identity and how

they function in the role of grandparent within their families?

Research exploring these issues and focussing specifically on the

impact on grandparents when their grandchild has a disability is virtually

non-existent. Whilst a large body of literature has focussed on the role of

grandparents in families with non-disabled children, much less is known

about the nature and experience of grandparenting when a grandchild has a

disability (Mitchell, 2007). Critically, although a handful of studies have

explored the role of grandparents when a grandchild has a specific disability,

such as arthritis (Britton & Moore, 2002) or deafness (Nybo, Scherman &

Freeman, 1998), the majority of research to date has focussed on parents‟

views about grandparents‟ contributions (Mitchell, 2007). Moreover, no

research has explored if and how „grandparenting identity‟ might change as a

result of the experience of disability. It is well established that individual

grandparents construct their own identity as a grandparent based on the

symbols and beliefs of their culture, their own life‟s experiences and their

background (Kornhaber, 1996). Research suggests there are five basic styles

of grandparenting, and grandparents may adopt one or a mixture of these in

their interactions with grandchildren: formal, distant, reservoirs of family

wisdom, surrogate parents and fun-loving (Newgarten & Weinstein, 1964).

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Kornhaber (1996) built on these roles to develop his theories explaining

grandparenting: Grandparent Drive, Latent Grandparent Identity (LGI) and

Functional Grandparent Identity (FGI). Grandparenting Drive is what “drives”

some grandparents to establish and keep relationships with grandchildren,

whilst others remain distant – both emotionally and physically. LGI, which

develops throughout a person‟s life, is an individual‟s „theoretical‟

expectations and beliefs about the grandparenting role, whilst FGI is the

actual styles and behaviours adopted by the grandparent following the birth

of the grandchild. The roles and relationships grandparents adopt within

their particular families typically reflect these identities. However, the birth of

a grandchild with a disability has the potential to disrupt these roles and

relationships, potentially presenting significant challenges to the grandparent

in terms of finding a balance between these competing agendas of

relationships and identity.

Overall Purpose and Significance of the Research

This thesis focusses on the perspective of the grandparent and

investigates the roles and relationships they have with their families and

grandchild when the child has a disability, specifically any changes to LGI

and FGI. A qualitative research methodology was adopted, as understanding

the meanings, symbols and beliefs that grandparents attribute to their

individual experience was essential. In contrast to previous studies, which

examined the relationships grandparents have with their grandchild from the

perspective of the parents, this research focusses on grandparent‟s

perspective. It addresses a significant gap in knowledge regarding the

grandparent‟s experience and navigates the challenges of grandparenting a

grandchild with a disability and the impact that may have on their own lives

and their families. The primary objective is to develop an enhanced

understanding of the relationship a grandparent has with their grandchild

when the child has a disability.

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Specific Aims of the Study

In keeping with the overall purpose of the study, to understand the

nature of the roles and relationships grandparents have with their grandchild

who has a disability and the impact this experience has on the identity of the

grandparent, four specific aims arise. These are:

to explore the experiences of grandparents who have a

grandchild with a disability

to examine any differences or changes in the roles and

relationships the grandparents have with their grandchild who

has a disability, especially in comparison to the relationships

they have with their typically developing grandchildren.

to explore the impact having a grandchild with a disability may

have on a grandparent‟s Latent Grandparent Identity (LGI) and

Functional Grandparent Identity (FGI)

to explore the impact having a grandchild with a disability has

on grandparent‟s personal lives and extended family inter-

relationships

Methodology

To achieve these project aims, this research utilised a qualitative

phenomenological approach. Phenomenological research begins with the

acknowledgement that there is a gap in our understanding of a specific

phenomenon, which has not been overtly described and explained. This

approach is appropriate when the purpose of the exercise is to “understand”

the real life experience of the participants, and in this context, enables the

researcher to better appreciate the phenomena of being a grandparent of a

child with a disability (Baker, 1999; Neumann, 1991). The aim of

interpreting the results is to gain illumination, impressions and in-depth

understanding of the phenomena, not the numbers or causal prediction

offered by quantitative research. As Liamputtong and Ezzy (2005), argue, in

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qualitative research data saturation is much more important than the sample

size:

Many people become concerned about how many cases constitute a

large enough sample for qualitative research. The answer to this

question is simple; when the researcher is satisfied that the data are

rich enough and cover enough of the dimensions they are interested

in, then the sample is large enough. (p. 49)

Participants

This research utilises a qualitative approach to explore the impact and

experience of having a grandchild with a disability, with in-depth interviews

conducted with 22 grandparents (17 women, 5 men) residing in Brisbane,

the capital city of Queensland in Australia. The grandparents of children with

a disability ranged in age from 55 to 75 years old, with over half under 65

years (n=12). The majority were married (2 were widowed) and had one

grandchild with a disability, with four having two grandchildren with a

disability. All grandparents were maternal grandparents and one

grandmother was not the biological grandmother of the child in question.

The majority were now retired (only three still in the workforce) and most

(16) reported significant prior experience of working with children with

disability in their pre-retirement occupations as teachers/teachers aides (10),

registered nurses (4), and aged/disability support workers (2). All self-

identified as being of Anglo-Saxon origin and having either a secondary or

tertiary level education. The financial circumstances of the grandparents

appeared to be quite varied with the majority either self funded retirees (10)

or in receipt of government funded aged pensions (9). All identified that

despite their socioeconomic situation, they experienced significant pressures

in responding to the unexpected costs associated with having a grandchild

with a disability. At the time of interview in 2007, the grandchildren were all

under 17 years of age (ranging from 2 to 14) and the most common

disabling conditions were cerebral palsy (n=2), Down Syndrome (n=3),

autism/aspergers syndrome (n=4). Other conditions – self-reported by

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grandparents - included ADHD, agenesis of the corpus callosum, DeGeorges

syndrome, lissencephaly, Rhetts syndrome, selective mutism, spina bifida,

trychorhina thalanygl and ulcerative colitus. Whilst the severity and cause of

disability differed, the grandparents described the nature and impact of the

disability to be moderate to severe. For the majority, the child with a

disability was male and all were grandparents of at least one other

grandchild without a disability.

Procedure

The study received ethical approval from the Queensland University of

Technology Human Ethics Committee and standard good practice ethical

protocols were followed, with written consent obtained from each

participant. All participants were provided with an Information Sheet which

outlined the details of the study, the benefits and risks associated with

participating, that they could withdraw without penalty at any time and the

measures undertaken to ensure that their anonymity was protected. A non-

probability purposive sampling approach was utilised to recruit grandparents

of a grandchild with a disability for interviews about their experiences, with

advertisements placed in the newsletters of older people‟s organisations.

This approach, whilst criticised for its limited reliability, facilitates an in-depth

understanding of the phenomena that would not be achieved using a

random survey or experiment. Semi-structured discussion format interviews,

best described as a “conversation with purpose” that describes the

experiences of the interviewee in the words of the individual, (Minichiello,

Aroni, Timewell & Alexander, 1990, p. 87) were conducted in participant‟s

homes and lasted approximately 90 minutes. On three occasions, both the

grandfather and the grandmother were interviewed. The following key areas

were covered:

recall of their experiences at the time of diagnosis

relationship and activities with their grandchild (and whether this

differed from other grandchildren)

factors that influenced their own grand-parenting role

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positive and negative experiences of having a grandchild with a

disability

relationships with and impact on all family members

expectations for the future

Data Management and Analysis

All interviews were audio-recorded and later transcribed, with the transcripts

checked against the original audio recordings and with participants to ensure

accuracy. Computer based document management programs were

investigated, with NVivo7 used to assist with the data analysis. NVivo7 is a

qualitative analysis software program that assists in the management of

large text sections into similar or different words and phrases, can enhance

the analysis of large quantities of qualitative data and aid the researcher to

identify themes and categories (Kellie, 2004). However, with Coffey,

Holbrook and Atkinson (1996) cautioning the use of such electronic

programs as they may “alienate the researcher from the data” (p. 312), an

iterative process was utilised so that transcripts were read and reread

multiple times to ensure familiarity with the data.

Analysis of the data at the initial stage was conducted by the researcher,

with a thematic approach utilised to identify and code meaningful categories

and themes and patterns (Liamputtong, 2005). The first step in thematic

analysis is data immersion; interview notes and transcripts were read and re-

read, leading to the identification of an initial list of patterns. Manual coding

was done, supported by Nvivo7, by highlighting, grouping and making notes

while reading the data. Second, after generating initial patterns, data were

classified according to identified themes, which were expanded and

combined into sub-themes. Finally, the themes were reviewed, categorised

and named to create a comprehensive picture of the findings (Liamputtong,

2005). To ensure qualitative credibility and rigour, however, a process of

member checking, (allowing the participants to check that the researcher

has accurately recorded their experiences and transcripts reflect their words

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and meanings) and peer review was incorporated into the design of this

research; the peer-review process included two other qualitative analysis

experts (the supervisory team) also participated in the coding and analysis

process. This approach ensured both participant and peer validation of the

findings (Gribich, 1999; Krefting, 1990).

Account of Research Progress Linking Research Papers

Research Logic and Thesis Structure

As well as meeting the Queensland University of Technology

requirements for a Thesis by Publication, the structure of this thesis captures

the journey undertaken by the participants and the researcher in order to

fully comprehend the reality that is the relationships these grandparents

have both with their grandchildren who have a disability and the family. As a

Thesis by Publication, the structure of the thesis is different to a traditional

thesis and is outlined below; notably, there is no single Results or Method

chapter with Chapters 4-6 reporting the methodology and findings of the

research through separate articles on specific issues (with their own

introduction, method, results and discussion sections). Chapter 6 unites the

articles and brings the thesis in an overall conclusion.

Chapter 2: Literature Review (Paper One)

Chapter 2 outlines a comprehensive literature review on the subject

area. This literature review was published as a journal article – „Sustaining

Families in the 21st Century: The Role of Grandparents‟. It outlines the

development, changes and challenges involved in grandparenting over the

past century, highlighting the frequently crucial role that grandparents play

in maintaining families in the twenty-first century.

Chapter 3: Grandparenting a child with a disability: An emotional

rollercoaster (Paper Two)

As our knowledge is extremely limited about the experiences of

grandparents when their grandchild has a disability, Paper Two documents

the emotional journey of 22 Australian grandparents. Three key themes

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characterised their emotional journey: Adjusting (the transition from anger

to acceptance), The „Double Grief‟ (sadness about what might have been for

both their child and grandchild) and Pride in Family (pride in family‟s ability

to adjust to the challenges of the situation). As the first Australian study to

explore the experiences of grandparents when their grandchild has a

disability, the research provides important new knowledge about

grandparents‟ experiences which will inform current policy debates.

Chapter 4: Impact of disability on families: A grandparent‟s perspective (Paper Three)

Paper Three focusses specifically on grandparents‟ experiences of

caring for a child with a disability and the impact on their family relationships

and quality of life. Four key themes characterised grandparents‟ views about

their role in the family: Holding Own Emotions (decision to be positive), Self-

Sacrifice (decision to put family needs first), Maintaining Family Relationships

(being the go-between) and Quality of Life for Family in the Future (concerns

about the future). The article highlights the centrality of grandparents to

family functioning and quality of life, whilst exploring the significant cost to

their personal wellbeing.

Chapter 5: My grandchild has a disability: Impact on grandparenting identity, roles and responsibilities (Paper Four)

Paper Four explores the roles grandparents adopt within their families

and discusses the development of the grandparent‟s identity, focussing on

Kornhaber‟s (1996) theory of Latent Grandparent Identity (LGI) and

Functional Grandparent Identity (FGI). The data suggest that grandparents

of a grandchild with a disability develop their LGI in the same way that most

grandparents do, however, as a result of the nature of the disability,

differences become apparent in the application of FGI.

Chapter 6: General Discussion and Recommendations

This chapter unites the articles through a discussion on the changing

perceptions of disability once a diagnosis has been made and the impact on

14

the relationships and roles the grandparent adopts. This chapter draws

together the research findings to discuss the overall theoretical and practical

implications for grandparents, for families, for children with disability and for

the community as a whole.

15

CHAPTER 2: PAPER 1

Sustaining Families in the 21st Century: The role of Grandparents

Paper 1 Woodbridge, S. (2008). Sustaining Families in the 21st Century: The role of Grandparents. International Journal of Environmental, Cultural, Economic & Social Sustainability, 4 (2).

17

Sustaining Families in the 21st Century – The role of

Grandparents

The world‟s population of people 65 years and over is expected to increase significantly over the next 30 years. Whilst the majority of

this increase will be in developed countries, the proportion of older people in developing countries will also increase. In the United Kingdom, for example, the proportion of the population 65 years and

over will rise to 26% by 2020 and to 38% 2050 (United Nations, 2002). In South Korea, 7% of the 47 million residents are aged over

65 (United Nations, 2002). In Australia, the proportion of the population 65 years and over is currently around 12%, and is predicted to exceed 25% by 2050 (United Nations, 2002). Whilst some

countries will have less substantial population growth, for example the impact of HIV in Africa, the ageing of the population has stimulated

significant interest in the experiences of older people and how this changing demographic will affect the structure of families. In the early twentieth century, it was unusual for children to have living

grandparents. Children born in the twenty-first century, however, may have and know multiple generations of grandparents. This article

discusses the changing role of grandparents, outlining the historical and societal factors influencing grand-parenting and the contribution grandparents make to sustaining families in the twenty-first century.

Historical Perspective on Grand-Parenting

Whilst Grandparents have been a feature of society since the

beginning of human families, surprisingly little has been written about this experience prior to World War II. In the 17th and 18th Centuries,

older generations held a place in many cultures and society which was respected and revered. However, this was also a time when society was both hierarchical and patriarchal; males, and in particular,

grandfathers held much of the power and control within families and were responsible for the distribution of wealth, predominately in the

form of land and property (Falk and Falk, 2002). Indeed, early writers on the role of grandmothers tended to present a very negative perspective of their contribution to society. Vollmer

(1937) went so far as to vehemently denounce the role as having a negative effect on the relationships within families, particularly the

mother and the child. In fact, any positive comments on the role were always countered by comments that grandparents „needed to know their place‟ (Kornhaber,1996). Erikson (1950) reported that even in

communities where grandparents had a high status and were described in mystical or spiritual terms, the delinquent activities of the

child were often blamed on the grandmothers (even if the

18

grandmother had since died). Notably, these writers all examined the relationship of grandparents to the family from the perspective of the

child, with little research conducted from the perspective of the older person.

Subsequently, social scientists such as Mead (1972) provided

insight into the relationships of grandparents to their family from a cultural perspective. She identified that grandparents were responsible

for providing a multitude of roles, including that of custodians of the history of the family, and that these roles were often delineated according to kinship relationships and the system used to assign

membership of the particular group. The particular system which operates in a community is influenced by the cultural traditions of that

society; for example the patrilineal descent system which operates in China clearly allocates more status to the male relatives on the father‟s side of the family. Mead (1972) argued that despite these particular

systems, the presence of grandparents and grandchildren provides opportunities for understanding the future and the past and for

individuals to become “a full human being” (p.282). Historical knowledge concerning the role of grandparents appears to focus on two distinct periods of time: pre-industrialization and post-

industrialization. Both Mead (1972) and Erikson (1950) agreed that the industrial revolution had a significant impact on the status of

grandparents and was responsible, together with the increasing life span of older people, for the changing role of grandparents.

Pre-Industralisation and Post-Industralised Society

To understand the role of grandparents in pre-industralised society it is important to understand the nature of families during that time.

Families provided the only source of both emotional and economic well being (Fry, 1995). Older people were important contributors to the overall survival of the family and therefore received recognition as

they aged for this contribution from the younger members of the family. Erikson (1950) stated that pre-industrial societies appeared to

value grandparents not for what they could contribute to the family but for what they had contributed in the past in order that the family should survive.

However, it appears that after the industrial revolution, the status of grandparents changed significantly, for the worse. Older

people ceased to have a respected role in society and were no longer valued for their prior contribution to the family; rather, they were seen as a burden on families. Fry (1995) suggests that this change

coincided with the increased wealth of the family. The shift to a reliance on government to provide for the “disadvantaged” from the

taxes it received from employees in the factories and industries also resulted in a diminished role for the elders of families. No longer were extended families who owned and worked the farmlands of the nation,

19

providing food and other materials for the larger cities, seen to be important contributors to the overall well being of society (Falk & Falk,

2002). As the industrial revolution gave way to events such as the Depression of the 1930‟s and World War II, further changes to the role

of grandparents became evident. Although narratives about the experiences of African -Americans

during the depression of the 1930‟s and the period of slavery in America highlight the value of elders or grandparents, little is known about the experiences of grandparents in tribal or indigenous

communities during this time-period (Falk & Falk, 2002). With the outbreak of war across the world the role of women in society changed

as many men were recruited to the armed services. Women were expected to take on roles that had previously been the domain of the males. In industry, in agriculture and in providing services, women

were engaged in activities which took them away from their traditional role of wife and mother. Many men did not return from the war, thus

leaving families without a male figurehead and requiring the women to remain in the workforce in order to provide for their families. Those men who did return from the war often had physical and emotional

injuries which rendered them unable to return to their previous role. Cramped housing and shortages of food as a result of the war meant

that families suffered considerable stress and anxiety, with older people often subjected to significant abuse (Ikels, 1998). Given the limited resources of these families, grandparents were often seen to be

an additional burden that the family had to contend with. Thus, post war, the role of grandparents was relegated to little more than a

ceremonial one. In addition, changing work and housing demands resulted in many families being dislocated from each other for the first

time, relocating to other parts of the country and outside the country with migration from Britain to Australia and from Europe to the United States (Kornhaber, 1996).

Contemporary society

In the latter part of the twentieth century, researchers began to

report on the changing role of grandparents in contemporary society. Grandparents were acknowledged as providing high levels of support, both emotional and financial, to families in times of stress and crisis

(Kornhaber, 1996). Grandparents are increasingly valued in the 21st century for how they contribute to and sustain the family structure and

how they “act out” this role (Kornhaber, 1996). Increasingly, grandparents are called upon to provide both social and instrumental support for their families. This may range from occasional to full time

child care, assisting with school fees, providing housing, being role models for education and careers paths, providing emotional and

financial support when relationships dissolve, and as custodian of the families history and traditions. Thanks to significant and rapid societal

20

change in the twenty-first century, the role, nature and influence of grand-parenting has changed significantly. Contemporary

grandparents often navigate non-traditional and complex family arrangements, with limited experience about how to relate to issues arising from divorce, same sex couples raising children, parental

substance abuse and neglect, or a grandchild with a disability.

Defining Families – theoretical perspectives

A number of theoretical approaches can be used to examine

families, the impact of changing family structures and the role of grandparents. Family Systems theory (Minuchin,1974; Turnbull,

1990) contributes to our understanding of how families operate, suggesting that the relationship between mother and child is not the only important relationship for children and that all relationships within

the system have the opportunity to influence the experiences of the child and each member of the family. Turnbull et al (1986) argue that

the unique nature of each family is influenced by the characteristics of each member of the family and by the culture and ideological style which has developed over time. These beliefs can affect how families

cope; for example, whether they are able to ask for assistance should they need it and, more importantly, whether they allocate blame for an

unexpected outcome, such as the birth of a child with a disability. Alternatively, Bronfenbrenner‟s (1979) social ecological model

suggests that not only are the interactions between members of the

family important but that the capacity of the family to cope with situations, such as, the birth of a child with a disability, is influenced

by where that family sit in terms of the wider societal systems (i.e., external factors such as poverty, social class, resources). In some

cases they can be influenced by decisions made without the consultation or participation of the individual themselves.

Defining Grandparents - Theoretical Perspectives

Grandparents have been a feature of families since primitive time; yet, whilst the birth of a grandchild confers the title it does not

describe the role. Individuals decide the nature of the role and the relationship based on their own experiences, the meanings and symbols ascribed to the role in their particular culture and the

expectations of the family unit as a whole (Szinovacz, 1998). Kornhaber (1996) discusses grandparenthood in the context of

lifespan development, using Eriksons‟ Identify and Lifecycle model to suggest that grandparenthood usually occurs at a time of “generativity”. Essentially, as the grandparent ages they seek to

ensure that there is a meaning for one‟s life, purpose, understanding and self-worth. Becoming a grandparent provides the individual with

the opportunity to share their knowledge gained from years of experience with the new generation, therefore ensuing that some part

21

of them remains once they are gone. Kornhaber (1996) also suggests that this could be better explained by adding a ninth stage to Erikson‟s

eight Identify and Lifecycle stages, with the ninth stage potentially classed as “continuity”, where an older person remains connected to mankind through the relationships and interactions that they have with

the wider society. The relationships and interactions they have with their grandchildren are particularly important, as the grandchildren

become the vessel in which the “wisdom, experiences and personal examples” are stored ready to be passed on to successive generations (p58). Joan Erikson (Erik Erikson‟s wife), discussed the ninth stage as

being a time when questions about identity and self worth are contrasted with increasing fraility. Importantly, the role of

grandparent provides an opportunity for the older adult to identify with the previous stages in a positive way (Erikson, 1997). As with Erikson‟s other stages, all of which have an alternative

position, Kornhaber proposes that the contrary position to “continuity” – which is leaving something behind of oneself for future generations -

would be “disappearance”. Without this legacy which has been passed on through the grandchild, the older person eventually would disappear, known to no one, without any mark of their contribution to

be seen. Kornhaber (1996) builds further on these concepts through the

Grandparent Study, a longitudinal study commenced in 1970 which examines the relationships between grandparents and their grandchildren. From this, Kornhaber develops his theory of Latent

Grandparent Identity (LGI). He argues that although this identity does not come to the fore until the birth of the first grandchild, it has in fact

been forming since early childhood and is informed by the individual‟s own experiences. It is added to along the way in terms of one‟s

personality, feelings of altruism and negative experiences (such as absent grandparents) and affects the individual‟s ultimate perceptions and views on how they will play out the grandparent role (when and if

biological grandparenthood occurs). Interestingly, recent research has illustrated that grandparent identity impacts on an older person‟s well-

being; Reitzes and Mutran (2004) found that positive grand-parenting identity had a positive effect on the well-being of the individual and intergenerational relationships, whereas a negative grandparent

identity was linked to depressive symptoms in the older person.

Grandparenting Drive

Together with the LGI, Kornhaber‟s studies developed the concept of a Grand-parenting Drive. This he explains, provides an understanding of why some grandparents are “driven” to establish and

keep relationships with their grandchildren even when the “going gets really tough” and why for others it is suffice for them to remain at a

distance both emotionally and physically. Yet, as Strom (1997) notes, no matter what the grandparent drive is or what stage the

22

grandparent may be at, the success or otherwise of the grandparent role is dependent on a number of variables, such as the expectations

of the family, the expectations of the grandparent and the expectations of the grandchild. Strom (1997) argues that opportunities for grandparents to fulfill their role require all

participants to be involved and for there to be an openness in communication between all groups so that clarity exists and

expectations are more likely to be met. Indeed, the individual grandparent constructs his or her own particular version of this role, drawing on the symbols and beliefs of

their culture in establishing the relationships they may or may not have with their grandchild (Kornhaber,1996). In particular,

Westheimer and Kaplan (1998) suggested that grandparents played “symbolic” and “instrumental” roles when it came to being a grandparent to their particular grandchildren.

Symbolic and Instrumental Roles

In a symbolic role, the grandparent provides an environment

which is stable, where the child feels safe, unconditionally loved and receives support in ways that are not of a monetary nature. This

grandparent role has been described by a number of writers as having responsibility for the transmission of wisdom and knowledge in relationship to the family history and traditions, and is often described

in terms of a mentor or role model (Gutmann, 1985; Neugarten & Weinstein, 1964; Kivinick, 1982). It has been suggested that this

particular role, which links the generations, is becoming increasingly important in a world where grandchildren‟s lives are far more complex than in the past (Kornhaber, 1996).

In an instrumental role, grandparents play a more utilitarian role in the lives of their grandchildren. They will often contribute to child-

care, school fees, provide housing for the family and, in some cases, are responsible for the day to day care of the grandchildren (assuming more of a parenting than grand-parenting role). A recent report

presented to the Australian Government by Council on the Ageing and National Seniors entitled „Grandparents raising Grandchildren‟ (2003)

indicated that despite Australia experiencing an increasing number of grandparents caring for their grandchildren, there is no specific data indicating the exact numbers. However, Australian Bureau of Statistics

data, released in 2005, suggests that there are 22,500 Australian families where grandparents were the guardians of their grandchildren.

Nearly half (47%) of these grandparent families were lone grandparent (usually grand-mother) families.

Grand-parenting Styles

Several decades ago, in an article entitled “The changing

American Grandparent”, Neugarten and Weinstein (1964) developed a

23

typology of five grand-parenting styles: formal, fun-loving, distant, reservoirs of family wisdom and surrogate parents. These five styles

are frequently used to describe different grand-parenting styles today, although it is important to note that each reflects a predominate style and that, in reality, grandparents may adopt a composite style

(Westheimer & Kaplan, 1998). Historically, it is more likely that grandparents follow a more

formal style, which emphasised grand-parenting at arms length and roles are respected. That is, the grandparents do not interfere with the parenting roles and may offer limited instrumental support such as

baby sitting but would not necessarily be interested in understanding the friendship networks or be involved in the social activities of the

grandchild. Conversely, the fun-loving style of grand-parenting sees the relationship between the grandparent and the grandchild operating in a very social context, with a focus on friendships, mutual

satisfaction and where authoritarian boundaries often initiated by the parents do not exist. This style of grand-parenting appears to be a

phenomena of contemporary grand-parenting, as there is little reference to this style in the historical literature and this style of grand-parenting is not referred to in literature which explores different

cultures (Westheimer & Kaplan, 1998). A „distant‟ grand-parenting style does not necessarily relate to

geographic distance from the grandchild but rather captures involvement with the grandchild. A grandparent whose involvement with their grandchildren is only on ceremonial and special days, such

as Christmas and birthdays, is utilising a distant style. The „reservoir of family wisdom‟ style captures the symbolic role of family historian

discussed by Kornhaber (1996), providing the intergenerational link often needed to provide meaning to the child‟s life. Opportunities for

answers to the “what was it like in your day, grandpa?” discussion provide the context in which this family wisdom and experience is passed on to the younger generation.

The final style of grand-parenting, „surrogate parent‟ style is becoming more common due to changes to family structure (i.e.,

divorce, parental substance abuse or neglect). In this style the grandparent, on most occasions the grandmother, steps in to attend to the needs of the grandchild when the parent/parents are unable to do

so; for example, the grandparent may take the children to child care or school, be available when the child is ill, volunteering at the school

etc. This style of grand-parenting can result in role confusion for the grandchild, especially if the parent/parents are absent for long periods of time and the grandchild becomes quite used to relying on the

grandparent for both symbolic and instrumental activities (Westheimer & Kaplan, 1998).

More recent research suggests grandparents see their roles as ever-changing, depending on the circumstances for themselves and for their grandchildren (Kornhaber, 1996), with Weibel-Orlando (2001)

finding that grandparents generally fulfilled one or a number of

24

symbolic or instrumental roles, Weibel-Orlando‟s roles were “distanced grandparent”; “ceremonial grandparent”; “custodial grandparent”;

“fictive grandparent”; “cultural conservator”, with grandparents adopting these roles based on their own experiences of grandparents and their desire to have some personal control in the development of

the relationships with their own grandchildren. Clearly, grandparents are often seen as vital to the well being of

the family. They often contribute significantly to families through intergenerational transfers in the form of childcare, education fee, mortgages, clothing, transport and cultural activities. In different

cultures, this contribution begins as soon as the child is born. For example, in Native American communities, grandparents provide much

of the infant and toddler care and the relationship developed through these experiences continues well into the child‟s adult life (Kornhaber, 1982). However, given that individuals view their role as grandparents

very differently, the contributions grandparents make to the family may also differ.

Families in the 21st Century

At the beginning of the 20th century, approximately 25% of newborns had both paternal and maternal grandparents still living. In

2000, this has changed to approximately 66% (Falk & Falk, 2002). Such statistics mean that an increasing number of young adults will have at least one grandparent who co-survives into the grandchild‟s

third decade. Uhlenberg (1996) suggests that this demographic change means the grandchild will have a number of relationships to

negotiate, questioning whether the relationship a grandparent has with the grandchild is different to the one they may have with their great-

grandchild. At the same time as changes to fertility and mortality rates have

significantly increased the numbers of grandparents, other societal

changes have occurred which has implications for the role of grandparents in today‟s society. Increasing participation in education

and increased career choices have resulted in many women delaying becoming mothers or in some cases not having children at all. Whilst there is a call for policies such as access to paid maternity and

parental leave, and family friendly workplaces, as a response to these changes to the nature of family life, the role of grandparents in this

environment is also changing. Grandparents are still reportedly the largest providers of care for children under school age in Australia (Weston, Stanton, Qu, Soriano,2001). That care ranges from

occasional care in the case of emergencies through to full time day care on a five to seven day basis.

Other changes to family structures which have impacted on the role of grandparents have been the consequences of the breakdown of the marriage or relationship of their adult children. Divorce rates in

Australia at the beginning of the 20 century and up until the 1960‟s

25

were consistently around the 2 per 1000. The introduction of the Family Law Act in 1975 in Australia, which significantly changed the

criteria necessary to dissolve a marriage, resulted in a dramatic increase in this figure; today, the Australian Bureau of Statistics (2003) suggests that 4 out of 5 marriages will end in divorce. This

change has meant that many more children find that the family networks with which they are familiar, and which provide them with

substantial security and support as they grow, become uncertain and fragmented. This may include access to grandparents (Weston, Stanton, Qu, Soriana, 2001), with a number of researchers noting that

in the case of divorce, young children will have a much stronger relationship with their maternal grandparents than with their paternal

grandparents (Uhlenberg & Kirby, 1998; Cherlin & Furstenberg, 1986; Kornhaber, 1996). This is normally because the majority of the grandchildren remain in the custody of their mothers rather than their

fathers following divorce or relationship breakdown (Weston, Stanton, Qu, and Soriana, 2001).

As well as providing instrumental support for grandchildren, there are growing numbers of grandparents who are primary caregivers for their grandchildren. The grandparents take on this role

when their children are no longer able to care for them. In America, the 2000 census identified that 2.4 million grandparents had sole

responsibility for 4.4 million children. Often called the “skipped generation”, grandparent headed families develop as a result of incarceration, mental and physical illness, drug and alcohol addiction,

HIV aids or an unwillingness to parent. In the case of primary care-giving, constructing the role of grand-parenting takes on a very

different dimension (Administration for Children and Families, 2002).

Grandfathers and Grandmothers

An important feature in considering the role of grandparenthood is the issue of gender. Thomas (1995) argues that the perceived role of grandparent for an individual is influenced in three ways by gender:

the gender of the grandparent, the gender of the grandchild and whether the grandparent is the paternal or maternal grandparent.

Traditionally, it has been thought that grandfathers are more likely to see their role as influencing grandchildren in an instrumental role i.e. financial support and work related advice. However, recent

research (Kivnick, 1982; Gutmann, 1975; Thomas, 1995; Falk & Falk, 2002) reports that many grandfathers indicate that they are able to

participate more with their grandchildren than they did with their own children, where work commitments and social expectations of the time meant mothers were primary care-givers. Fathers were often at arms

length from their children, expected to provide resources for the family at a more instrumental level.

Cunningham-Burley (2001) reported that grandfathers appeared to have some concerns regarding their role. Many were

26

keen to make up for not being there for their own children, but also were concerned that they did not repeat their past mistakes. This

caused many grandfathers to be somewhat hesitant in taking control of the development of the role with their grandchildren. This ambivalence comes at a time when family formations are no longer

what they used to be. For example, fathers today are currently more engaged with their children than in the past and both partners are

likely to contribute to the provision of instrumental support. The male breadwinner-female homemaker model is no longer the predominant model for families in to-days western society (Weston et al, 2001).

However, with changes to the workplace, including downsizing, often resulting in longer working hours, the influence of technology and less

job security, families are still time poor and need to call upon grandparents to assist.

Grandmothers were seen to have more of a role in developing

the social skills of the grandchildren, with many grandchildren reporting greater satisfaction regarding relationships with their

grandmothers than grandfathers. Spitze and Ward (1998) suggest that this is because the relationship between grandmothers and their grandchildren is likely more long standing, with many grandfathers not

as engaged with the grandchildren and dying younger. Facilitating communication and interactions between different family groups (kin-

keeping) is often done by women, thus resulting in stronger relationships across generations (Thomas, 1995). Indeed, grandfathers report that it is often difficult to take over this role,

should the grandmother pre-decease them as this is not seen as a normal or expected role by members of his family. Grandmothers

report that it is possible to have stronger relationships with younger grandchildren than with their adult grandchildren, although this can

change in the case of the marriage breakdown. Many adult grandchildren will continue to count on the support of their grandmothers at this time whereas young children are often unable to

make decisions and will be influenced by the relationship the adult child with custody has with the grandmother (Spitze & Ward, 1996)

Whilst it is possible to identify distinct differences in the grand-parenting experience based on gender, these differences are to be expected given the social construct of male and female roles within

society in general. It is nevertheless important to remember that how the individual grandparent develops their role will be a consequence of

their own experiences and the relationship that they had or did not have with their own grandparents. For example, when Waldrop and colleagues (1999) interviewed grandfathers about teaching values and

life lessons to their grandchildren, the grandfathers described how they either copied their own fathers‟ grand-parenting style or did the

opposite.

27

Grand-parenting – when a grand-child has a disability

Relationships within families are complex and various roles come with certain assumptions and expectations; this becomes even more so when a child has a disability, either from birth or as a result of

trauma (Kornhaber, 1996). As few prospective parents expect to have a child with a disability, grandparents can play a crucial role in terms

of support and helping families negotiate the complex issue of providing care for that individual. Whilst support from professionals is important, parents need to draw on the social support of families and

friends to enable them to cope with the day-to-day caring of their child (Schilmoeller & Baranowski, 1998). Often when a child has a

disability, family resources and support become stretched as the primary caregiver – typically the mother - are required to negotiate the complex demands of personal care, accessing professional care

and the day-to-day requirements of the family as a unit. Financial resources of the family can also become an issue, as funds for

treatment, mobility aids and alternative care need to be considered (Schilmoeller & Baranowski, 1998).

It is well established that grandparents often contribute

significantly to families through intergenerational transfers in the form of childcare, education fees, mortgages, clothing, transport, and

cultural activities, and this is particularly true for families where the child has a disability (AARP, 2003). Hastings (1997) identified that in the case of families where a child has an intellectual disability,

grandparents are an important resource, with maternal grandparents providing significantly more support than paternal grandparents.

As identified earlier in this paper, grandparents draw on role models and prior experiences to construct their own role, and develop

intergenerational relationships. This becomes significantly more challenging for grandparents when their grandchild has a disability as many have little experience of disability. Many grew up in an era

where children were described in terms of normal and sub-normal and where individuals with disability were removed from their families to

spend their days in institutionalized care (Sebeok, 1991). It is therefore not surprising that many grandparents report mixed emotions at the time of the diagnosis and have similar needs for

information in order to be there to support their families (Scherman, Gardner, Brown & Schutter, 1995). Attention to the needs of

grandparents will continue to grow as more and more grandchildren with disability are able to survive into their adult years due to improvement in diagnosis, early intervention and other medical

advances. Whilst there have been limited studies on the role and experiences of grand-parenting a child with a disability, (Hastings,

1997; Trute, B.,2003) relatively few studies have focussed exclusively on the relationships that grandparents have when a grandchild has a disability.

28

Conclusion

This paper has traced the development, changes and challenges involved in grand-parenting over the past one hundred years. It has illustrated how, in the twenty-first century, grandparents often play a

crucial role in sustaining families. On the one hand, some grand-parents are kin-caregivers and raise grandchildren when their parents

are unable due to illness or substance abuse. On the other hand, in light of increasingly non- traditional and complex family arrangements, contemporary grandparents also often provide a significant source of

symbolic and instrumental support. For example, a growing literature illustrates how grandparents can provide a stable and supportive

environment for grandchildren during divorce, custody and separation disputes. Whilst different grandparents play different roles in their grandchildren‟s lives, it is clear that most grandparents offer important

sources of support during crises and unexpected life events. However, more research is needed to explore the experience and nature of

grand-parenting in different cultural contexts, as well as developing a better understanding of grandparents‟ relationship with grandchildren raised by same sex couples or their interactions with a grand-child who

has a disability. Moreover, with increasing life expectancies of grandparents meaning that many will have long-term relationships

with grandchildren and great-grandchildren, there are a myriad of new questions about the role, nature and influence of grand-parenting in complex and diverse twenty-first century families.

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Hastings, R.P., (1997). Grandparents of children with disability: a

review. International Journal of Disability, Development and

Education. 44, p 329-340.

Hastings, R.P., Thomas, H., Delwiche, N., (2002). Grandparent

Support for Families of Children with Down‟s Syndrome. Journal

of Applied Research in Intellectual Disabilities. 15, p 97-104.

Horner, B.J., Downie, J., Hay, D A., Wichmann, H.M. (2007).

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Psychology,3, p 98-105.

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Reitzes, D.C., Mutran E.J., (2004). Grandparent Identity, Intergenerational Family Identity and Well Being. The Journals

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C.T. Greenwood Press. Strom, R., (1997) Building a Theory of grandparent development.

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No 4. p 255-286. Szinovacz, M., (1998) Handbook on Grandparenthood. Westport Conn.

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Thompson, E.H. (Ed). Older Men’s lives. Thousand Oaks. Sage

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CHAPTER 3: PAPER 2

Grandparenting a child with a disability: An emotional rollercoaster

Paper 2: Woodbridge, S., Buys, L., & Miller, E. (2009). Grandparenting a child with a disability: An emotional rollercoaster. Australasian Journal on Ageing, 28 (1), 37-40.

34

CHAPTER 3 JOURNAL ARTICLE 2.

STATEMENT OF JOINT AUTHORSHIP AND AUTHORS CONTRIBUTIONS IN THE

RESEARCH MANUSCRIPT WITH THE TITLE OF: Grandparenting a child with a disability: An emotional rollercoaster

The authors listed below have certified* that:

1. they meet the criteria for authorship in that they have participated in the conception, execution, or interpretation, of a least that part of the publication in their field of

expertise;

2. they take public responsibility for their part of the publication, except for the responsible

author who accepts overall responsibility for the publication;

3. There are no other authors of the publication according to these criteria;

4. potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or publisher of journals or other publications, and (c) the head of the responsible academic

unit and

5. they agree to the use of publication in the student‟s thesis and its publication on the

Australiasian Digital Thesis database consistent with any limitations set by the publisher requirements.

In the case of this chapter:

Woodbridge, S., Buys, l., Miller, E . (2009). Grandparenting a child with a disability: an emotional rollercoaster. Australasian Journal on Ageing (1), 37-40.

Contributor Statement of contribution*

Sandra Woodbridge

(Candidate)

Signature

Date

Chief investigator, significant contribution to the planning of

the study, data collection and analysis, literature review and

writing of the manuscript

Professor Laurie Buys

Significant contribution to the planning of the study (as

principal supervisor) data analysis and assisted with the

preparation and evaluation of the manuscript

Dr Evonne Miller

Significant contribution in the planning of the study (as associate supervisor) data analysis, preparation and evaluation

of the manuscript

Principal Supervisor Confirmation

I have sighted email or other correspondence from all Co-authors confirming their certifying

authorship.

_________________________ ________________________ _______________

Name Signature Date

35

Grandparenting a child with a disability: An emotional rollercoaster

Objectives: As our knowledge about the experiences of grandparents when their grandchild has a disability is extremely limited, the purpose of this research was to explore the emotional journey of Australian grandparents. Method: This qualitative research utilised purposive sampling and semi-structured in-depth interviews to explore the experiences of 22 Australian grandparents, whose grandchild had been diagnosed with a disability. Results: Three key themes characterised grandparent‟s emotional journey: Adjusting (the transition from anger to acceptance), The „Double Grief‟ (sadness about what might have been for both their child and grandchild) and Pride in Family (pride in family‟s ability to adjust to the challenges of the situation). Conclusion: As the first Australian study to explore the experiences of grandparents when their grandchild has a disability, the research provides important new knowledge about the emotional journey for grandparents. Unlike overseas research, Australian grandparents view themselves as being there to support their own children, rather than „holding the family together‟. The findings will inform current policy debates about the role of grandparents and highlight the importance of support services that help facilitate grandparent‟s role within their family Key words: grandparents, children with disability, emotional experiences Key Points

This is the first Australian study to explore the emotional experiences of grandparents when their grandchild has a disability.

The findings illustrate how grandparents adjust emotionally to the diagnosis, describing their journey from anger to acceptance. Critically, grandparents also report feelings of pride about how their family is coping with this unanticipated situation.

This exploratory research suggests that there may be cultural differences in how grandparents support families when a grandchild has a disability, with further qualitative and quantitative research needed.

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The birth of a child is a time of celebration for families, providing opportunities for relationships to develop between the generations of grandchild, parent, grandparents and great-grandparents. Typically, grandparents approach the birth of a grandchild with a variety of emotions, including joy and optimism about the future, excitement about transmitting parenting skills and knowledge to their child and, sometimes, feelings of anxiety and apprehension about the grandparent role [1][2]. When a grandchild is born with a disability, however, their emotional responses may be quite different from those they typically experience on the birth of a non-disabled child. This paper explores the emotional responses of grandparents coming to terms with the diagnosis that their grandchild has a disability and how these emotions influence the roles and relationships they have with the grandchild and their family. The birth of a grandchild with a disability, such as Down's syndrome, cerebral palsy, or cystic fibrosis, requires the grandparent to draw on previous life experiences to make some sense of the event. Critically, the experiences of grandparents are influenced by societal attitudes to disability that have evolved over time and have changed significantly during the lifetime of today‟s grandparents. When these grandparents were growing up, it would have been unusual for children with disabilities to be visible; historically, children with disabilities were withdrawn from their families, spending their childhood years in institutions and rarely seen in public [3]. Thus, it is not surprising that many of today‟s grandparents might find the diagnosis of their grandchild having a disability a significant emotional experience. Moreover, with advances in pre-natal testing and medical technology ensuring the survival of many more children, an increasing number of grandparents will have a grandchild with a disability [4].Yet, whilst there is a significant body of literature about the experiences of parents of children with a disability [5] and parent‟s perceptions of grandparents [6], less is known about grandparent‟s perspectives and experiences. This is despite an increasing awareness of the important symbolic and instrumental roles grandparents play in the lives of grandchildren [7][8], and significant literature investigating various issues such as their experiences with individual grandchildren [9], the impact of parental separation [10], relationship with donor-conceived grand-children [11] and the experience of grandparents who are primary care-takers of their grandchildren [12]. Only a handful of studies have explored the role and experiences of grandparents when their grandchild has a disability, with a recent review describing the limited research to date as predominantly small-scale, North American and focussed on parents‟ perceptions [13]. In the United States, Scherman, Gardner, Brown and Schutter [14] conducted telephone interviews with 32 grandparents of children with special needs, primarily spina bifida. These grandparents described going through an adjustment process, reporting initial feelings of grief and then focussing on providing emotional and financial support to their child and grandchild. They expressed concern about the stress their child was experiencing and wondered whether their grandchild would ever form a close bond with a non-family member or function independently. Baranowski and Schilmoeller [15] explored mothers‟ perceptions about the grand-parents adjustment to the birth of their grandchild with a disability. Focussing on issues of support, Mirfin-Veitch et al. [16] found that grandparental failure to provide support was not determined by the grandchild‟s disability but rather due to pre-existing family relationship dynamics and history. In the United Kingdom, Margetts, Couteur and Croom [17] qualitatively

37

explored the experiences of six grandparents of children with autism spectrum disorder and identified three key themes: „the parental bond‟ (striving to protect child and grandchild), „striving for answers‟ (searching for meaning) and „keeping intact‟ (holding the family together). Within the Australasian region, despite recent research exploring the experience of grandparents raising grandchildren [12], our knowledge about the role of grandparents in families of children with disabilities is non-existent. Thus, this research explores the emotions and interpretations Australian grandparents give to their experience of being a grandparent of a child with a disability. Method This qualitative research utilises a phenomenological approach, which is appropriate when the purpose of the exercise is to “understand” the real life experience of the participants and enables the researcher to better appreciate the phenomena of being a grandparent of a child with a disability [18][19] . A purposive sampling technique was utilised, with participants recruited for in-depth interviews via advertisements in the newsletters of older people‟s organisations. A total of 22 grandparents (5 men, 12 women) of children with a disability were interviewed; 18 were the grandparents of one child with a disability, whilst 4 grandparents had 2 grandchildren with a disability. The grandparents ranged in age from 55 to 75, with approximately half (n=12) aged between 55 and 65. Their grandchildren were under 17 years of age at the time of interview, with a wide variety of disability diagnoses. These are summarised in Table 1, with nearly half of grandchildren diagnosed with Autism, Aspergers Syndrome, Cerebral Palsy or Down Syndrome. Table 1: Grandchildren’s disability diagnoses and characteristics

Disability Cognitive Sensory Physical

DeGeorges Syndrome x x x

Autism (x 2) x

Cerebral Palsy (x 2) x x

Down Syndrome (x 3) x x x

Lissencephaly x x x

Aspergers Syndrome (x 2) x x

Trychorhina Thalanygl x x

Agenesis of the corpus callosum x x x

Ulcerative colitus/mental illness x x

Trigeminal Neuralgia/Discoform keratitis

x x

Rhetts Syndrome x x x

ADHD

Spina Bifida x x x

Selective Mutism x

Placenta Abruption x x x

Procedure Standard ethical protocols were followed, with the semi-structured discussion format interviews lasting between 60 and 90 minutes in participant‟s homes. On three occasions, both the grandfather and the grandmother were interviewed. The following key areas were

38

covered: experiences at the time of diagnosis; their relationship and activities with their grandchild (and whether this differed from other grandchildren), and what factors influenced their own grand-parenting role. Interviews were recorded and later transcribed, with Nvivo 7 utilised to identify categories, themes and patterns [19]. Follow up interviews were also held to seek further clarification and validation of key themes. Results One of the most significant and consistent themes identified by the grandparents was the range of emotions that they confronted since the birth or diagnosis of their grandchild with a disability. Three clear themes emerged: Adjusting (the transition from anger to acceptance), The „Double Grief‟ (sadness about „what have been‟ for child and grandchild), and Pride in Family (pride in family‟s ability to adjust to the challenges of the situation). Key Theme 1: Adjusting All grandparents described the emotional experience of adjusting to the diagnosis, recalling a very painful emotional journey from anger to acceptance and action. Grandparents spoke of initial feelings of „hitting rock bottom‟ after the diagnosis, describing how “well it was sort of like there was a death in the family, really, because you sort of expect to have naturally good children {#2) and “I guess you have the expectations of something with the birth of the baby and then suddenly it is something different” (#14). Whilst there were often initial feelings of shock and anger that this had „happened to them‟, these feelings of bitterness passed and were replaced by a “lets get on with it” attitude. Grandparents clearly saw their role as supporting their own child and the family: “We just want to support them. We don‟t want to interfere or you know we have confidence in their judgement and their desire to keep things going in a positive way” (#19). Notably, the experience had challenged grandparent‟s value systems, who wondered why this had happened to “their family”.

I have to say that I was very bitter um I felt you know. All I had ever prayed for all my life – I had never ever prayed for anything materialistic, all I had really prayed for was for God to watch over my family. Let them be healthy in mind and body and to be always gainfully employed and this was what he came up with and for quite some time I couldn‟t pray and I wouldn‟t pray. .. This isn‟t fair and I went through this for quite some time and then I picked myself up and said come on [name] just get on with it... And I do think that after the initial experience of hitting rock bottom the old saying is there is only one way of going and that is true (#13)

Well at first it was hard to accept, well you know reasonably hard to believe, not accept to believe that it had happened to us, these sorts of things always happen to other people, don‟t they, but once you accept it you‟re there for your daughter, you‟re there for your grandson and I feel great about having him (#3).

Key Theme 2: The Double Grief The grandparents consistently reported that they often felt sad at the situation, particularly as they adjusted their expectations and grieved for „what might have been‟ for both their grandchild and child. Essentially, as one grandmother commented, “I have got that sorrow inside of [me] for them” (#12). These feelings of sadness arose at different times for the grandparents. For some it was there early on, for others it was an underlying sadness for both their grandchild and for their own child. Two grandmothers summed it up in the following way:

There is just a sadness you carry with you all the time. There is a double grief because you grieve for the child but you also grieve for your child (#19)

I was devastated for the parents, as you are because it was unexpected and they were in shock and I

mean he was always loved – he was just their boy, but it was just terrible. I went through a period of grieving. (#6)

39

Whilst the grandparents described these feelings of sadness in a variety of ways, the overall impression appeared to be a feeling of sadness not so much for the child themselves, but more for what the child would not be able to achieve: “Its rather lovely, but it is sad because it is not like the others” (#13) and “I guess its sad, that‟s the only thing. I guess it‟s sad that he‟s not going to be able to live a so-called normal life” (#15). Grandparents grieved for the lost potential, especially when there were other grandchildren with which to compare expected milestones of careers, marriage and children; “I think deep down emotionally you feel so much for them and the fact that they‟re never going to get any better. You do worry about them, what‟s going to happen to them in the end” (#4). Grandparents also described how their relationship with this grandchild was not as they had anticipated, with one commenting that the relationship was not as open as “you can be as loving and caring, but you can‟t share a joke as readily as you can with a hearing child” (#6). Another grandmother described how the role was different than she had dreamed; she had always expected to be a grandmother like her own, who she had adored and had taught her to sew, embroider, knit and crochet. Unfortunately, “now it‟s a bit different, because I know I‟m not going to be able to teach him to do those sorts of things” (#2). Key Theme 3: Pride in Family As well as dealing with these feelings of sadness, however, grandparents reported immense feelings of pride in their family; they were proud of how their child was coping, they were proud when their grandchild achieved the unexpected, and some reported feeling pride in how their spouse overcame traditional societal conditioning about „the place and abilities‟ of people with disabilities to love and interact with the grandchild. Grandparents were often bought to tears when describing situations when the grandchild had achieved the unexpected; “there is a sense of identity in seeing him, well… seeing him trump and seeing him cope and not feel poor me in the situation. I can cope with this. You know, there is a feeling of pride and elation at his achievement” (#19). Grandparents also frequently spoke of the special place this particular grandchild held in their lives and hearts, noting how “you know, in terms of love and affection, it is a very rewarding experience. It‟s often these children who are very special (#11) and “he just loves to go where I go…. where as the other grandchildren are not in the least concerned” (#18).

Grandparents also reported feeling pride in their children. One grandparent said that she had never been so proud of the way her daughter and family were coping, whilst others noted conflicting feelings of sadness and pride: “I can remember feeling this tremendous pride in a daughter who could cope as well as she was coping. But I mean, I am sure there are things we are not seeing” (# 19) and “you know it is just so desperately sad for them. You are watching but you feel so helpless. I mean she is a very capable person. If anyone could handle the situation…no one could do it better than her” (# 8). Several grandparents also commented on how, in their lifetime, there had been a significant societal change in how people with disabilities are viewed. Whilst they were extremely grateful for this change, they still felt that, “you know, I don‟t think that society does deal with them very well (#14). Notably, one grandmother described her pride in how her spouse had put aside these negative expectations, commenting:

Not that he was ever nasty about them or anything but he grew up in a society where children like that tended to be put in cupboards in Europe they were a shameful secret and so he had that background and so one of the consequences has been it‟s been beautiful to see how much he loves them (#1).

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Discussion This exploratory Australian research has highlighted the intense emotional journey that grandparents experience when their grandchild is diagnosed with a disability. Three clear themes characterise this rollercoaster of emotions: Adjustment, Double Grief and Pride in Family. Consistent with the small body of existing research [17] [14], Australian grandparents report being on an emotional rollercoaster of anger, sadness and optimism as they make sense of and accept the diagnosis, frequently describing a „double grief‟ as they mourn for both their child and grandchild. However, contrary to existing research, Australian grandparents frequently spoke of their pride in their child and grandchild. In particular, grandparents took pride in how well their children faced the challenges associated with this unanticipated situation, which they felt reflected positively on both their own parenting and their family‟s unique values [20]. Interestingly, Australian grandparents do not appear to see themselves as holding the family together; rather, they view their child as the family „lynchpin‟. They are keen to let their child be the parent, to not overstep boundaries and to play a supporting role in the family relationship. This is contrary to recent research in the United Kingdom, where grandparents reported feeling responsible for „keeping intact‟ and holding the family together [17]. Whilst our research suggests that Australian grandparents view their role very differently, the relatively small sample sizes in both studies means that further research is needed to explore whether there might be cultural differences in how grandparents support families when a grandchild has a disability. Given the paucity of research to date, our findings provide an important preliminary understanding of grandparent‟s emotional experiences and insight into how to better support their needs. Clearly, as well as supporting parents, consideration needs to be given to assisting grandparents to process these emotions and to develop on-going strategies for coping with their situation. It is important that support services, information providers and resources acknowledge and help facilitate the important role grandparent‟s frequently play within their family. Grandparents of children with disabilities experience unique pathways in developing relationships and support roles within the lives of their family. This research highlights the challenges experienced by these grandparents on a daily basis in supporting the on-going needs of their child and grandchild. References

1. Lumby, J. The Gift. Grandmothers and grandchildren today. Melbourne, Vic. Pluto Press Australia, 2005.

2. Strom, R., Building a theory on grandparent development. International Journal of Aging and Human Development 1997; 45: 255-286.

3. Goffman, E. Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ. Prentice Hall, 1963.

4. Seligman, M., Darling, R.B. Ordinary Families, Special Children: A Systems Approach to Childhood Disability. (2nd Ed.) New York: The Guildford Press, 1997.

5. Hastings, R.P., Taunt, H.M. Positive perceptions in families of children with developmental disabilities. American Journal of Mental Retardation 2002; 107: 116-127.

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6. Hastings, R.P., Thomas, H., Delwiche, N. Grandparent support for families of children with Down Syndrome. Journal of Applied Research in Intellectual Disabilities 2002; 15: 97-104.

7. Westheimer, R.K, Kaplan, S, Grandparenthood. New York: Routledge, 1998. 8. Kornhaber, A., Contemporary Grandparenting. Thousand Oaks, CA. Sage

Publications, 1996. 9. Fingerman, K.L.. The Good, the Bad, and the Worrisome: Emotional Complexities in

Grandparents‟ Experiences with individual grandchildren. Family relations. 1998; 47:403-414.

10. Drew, LA., Smith, P.K., The impact of parental separation/divorce on grandparent-grandchild relationships. International Journal of Aging and Human Development 1999; 48 (3): 191-216.

11. Perlesz, A., Brown, R., Lindsay, J., McNair, R., De Vaus, D., Pitts, M., Family in transition: parents children and grandparents in lesbian families give meaning to “doing family”. Journal of Family Therapy 2006; 28 (2): 175-199.

12. Dunne, E., Kettler, L.J., Grandparents raising grandchildren in Australia: exploring psychological health and grandparents‟ experience of providing kinship care. International Journal of Social Welfare 2007; 16: 000-000 (1-13) 13. Mitchell, W., Research Review: The role of grandparents in intergenerational support for families with disabled children: a review of the literature. Child and Family Social Work 2007; 12: 94-101. 14. Scherman, A., Gardner J. E. Brown, P., Schutter, M. Grandparents‟ adjustment to grandchildren with disabilities. Educational Gerontology 1995; 21 (3): 261-273. 15. Baranowski, M.D., Schilmoeller. Grandparents in the Lives of grandchildren with disabilities: Mothers Perceptions. Education & Treatment of Children 1999; 22: 16. Mirfin-Veitch, B., Bray, A., Watson, M. “We‟re Just that sort of Family” Intergenerational Relationships in Families Including children with disabilities. Family Relations 1997; 46: 305-311. 17. Margetts, J.K. Le Courteur A., Croom, S. Families in a state of flux: the experience of grandparents in austism spectrum disorder. Child: Care, Health & Development 2006; 32 (5): 565-574. 18. Baker, T.L., Doing Social Research. Singapore. McGraw-Hill, 1999. 19. Neuman, W.L. Social Research Methods Qualitative and Quantitative Approaches 1991; Needham Heights, MA. Allyn & Bacon. 20. Liamputtong, P. Ezzy, D., Qualitative Research Methods (2nd Ed.). Melbourne. Oxford University Press, 2005.

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CHAPTER 4: PAPER 3

Impact of disability on families: A grandparent’s perspective

Paper 3 Miller, E., Buys, L., & Woodbridge, S. (29/07/10 Accepted with minor revisions: 19/08/10 resubmitted to Journal of Intellectual Disability Research). Impact of disability on families: A grandparent‟s perspective

44

CHAPTER 4 JOURNAL ARTICLE 3


RESEARCH MANUSCRIPT WITH THE TITLE OF: Impact of disability on families: A

grandparent’s perspective


1. they meet the criteria for authorship in that they have participated in the conception,

execution, or interpretation, of a least that part of the publication in their field of expertise;




4. potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or

publisher of journals or other publications, and (c) the head of the responsible academic unit and

5. they agree to the use of publication in the student‟s thesis and its publication on the Australasian Digital Thesis database consistent with any limitations set by the publisher

requirements.


Miller, E., Buys, L., & Woodbridge, S., (29/07/10 Accepted with minor revisions:

19/08/2010 resubmitted to Journal of Intellectual Disability research) Impact of Disability on families: A grandparent’s perspective.


Sandra Woodbridge

(candidate)

Signature

Date

Chief investigator, significant contribution to the planning of

the study, data collection and analysis, literature review and writing of the manuscript


Significant contribution to the planning of the study (as principal supervisor) data analysis and assisted with the

preparation and evaluation of the manuscript

Dr Evonne Miller

Significant contribution to the planning of the study (as

associate supervisor) data analysis and assisted with the preparation and evaluation of the manuscript



authorship.

_________________________ ____________________________ _______________

Name Signature Date

45

Impact of disability on families: A grandparent’s perspective Abstract Background Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australian study, this article explores grandparents‟ experiences of caring for a child with a disability and the impact on their family relationships and quality of life. Method A qualitative purposive sampling design was utilised; semi-structured interviews were conducted with 22 grandparents (17 women, 5 men) of children with a disability. Grandparents ranged in age from 55 to 75 years old and lived within a 90 minute drive of Brisbane, Australia. Interviews were transcribed and responses analysed using a thematic approach, identifying categories, themes and patterns. Findings Four key themes characterised grandparent‟s views about their role in the family: Holding Own Emotions (decision to be positive), Self-Sacrifice (decision to put family needs first), Maintaining Family Relationships (experience managing family relationships) and Quality of Life for Family in the Future (concerns about the future).

Conclusions Grandparents are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal wellbeing. Implications for policy, practice and research are discussed, particularly grandparents fear that their family could not cope without their support.

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Introduction Families are the primary carers for children with intellectual and developmental disabilities; in Australia, one in eight families have at least one child with a disability living at home, with intellectual (59%) and sensory/speech (53%) disabilities the most common (Australian Bureau of Statistics [ABS], 2008). Whilst parents frequently focus on and make positive meaning from the experience (Bayat, 2007; Reichman et al., 2008), the reality is that caring for a child with a disability can be an emotionally, financially and personally challenging experience. A significant factor influencing overall family functioning and how well parents cope is the encouragement, friendship and advice they receive from their informal support networks, specifically close friends and extended family, such as grandparents (Mayes et al., 2008). Yet, to date, very little is known about how these invaluable support people view their role, specifically their expectations, experiences, ability and willingness to be a resource to parents and families. Research has predominantly focussed on the experience of mothers (who are typically the primary caregivers), with much less known about the role of other key members in the family, such as fathers (e.g., Ricci & Hodapp, 2003), siblings (e.g., Cuskelly & Gunn, 2006) and extended family members, such as aunts, uncles, in-laws and grandparents (e.g., Margetts et al., 2006). In particular, grandparents typically play a central role in family life – supporting their adult children, caring for their grandchildren and maintaining extended family relationships. When a child has a disability, grandparents can be an important resource and support to the family – for example, in Australia, 10% of primary carers report that the child‟s grandparents provide significant assistance and share in the caring responsibilities (ABS, 2008).To date, however, very little is known about grandparent‟s experiences and how playing this critical support role impacts on both their personal lives and family inter-relationships. The role of grandparents Very few research studies focus specifically on grandparent‟s role in the family when a grandchild has a disability, with a recent review describing the limited research to date as primarily small-scale, North American and focussed on parents‟ perceptions (Dunne & Kettler, 2007). For example, Baranowski and Schilmoeller (1999) explored mothers‟ perceptions about the grandparent‟s adjustment to the birth of their grandchild with a disability, whilst Heller et al. (2000) surveyed mothers of a child with intellectual disability about sources of social support and found that maternal depression was predicted by reduced emotional support from grandparents. When grandparents do not provide support, however, research suggests that it not about the disability but about pre-existing family relationships (Mirfin-Veitch et al., 1997). In a longitudinal study of Canadian families whose children have developmental disabilities, Trute (2003) developed a grandparent support index and found that emotional (but not practical) help from grandparents predicted mothers and fathers psychological wellbeing. Only a handful of studies have directly explored grandparent‟s viewpoints – in telephone interviews with 32 American grandparents of children with special needs (primarily spina bifida), Scherman, Gadner, Brown and Schutter (1995) documented an initial emotional grieving and adjustment process, with grandparents then focussing on providing emotional and financial support to their child and grandchild. In the United Kingdom, Margetts, Couteur

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and Croom (2006) interviewed six grandparents of children with autism and identified three key themes that typified the experience including, the parental bond (caring for adult child and grandchild), striving for answers (struggling with diagnosis) and keeping intact (worrying and feeling responsible for wider family). Of particular interest is that grandparents were concerned about successfully managing wider family relationships, raising issues of sibling rivalry, keeping the family united and remaining aware of the needs of their other children and grandchildren. In Australia, we have also explored the relationships between grandparents and their grandchild who has a disability, using a phenomenological approach to understand the everyday lived experiences of 22 grandparents (Woodbridge, Buys & Miller, 2009). In that research, we found that grandparents conceptualised the experience as „an emotional rollercoaster‟ but felt pride in their family‟s ability to adjust to the challenges of the situation. Specifically, we identified three key themes characterising grandparent‟s emotional journey: adjusting (transition from anger to acceptance), „double grief‟ (sadness about what might have been) and pride in family (regarding their ability to cope with this unexpected situation). Whilst this small body of research demonstrates that grandparents are a key resource providing emotional and instrumental support to families, research to date has not fully explored how adopting the role as a critical support person might impact grandparent‟s lives and wider family relationships, particularly relationships between family members. The reality is that contemporary grandparents are diverse individuals, balancing multiple roles and responsibilities that may potentially conflict with their role as key informal support person – they are also parents, spouses, workers and community residents, with their own dreams and aspirations as they age and approach retirement (Tepper & Cassidy, 2004). Thus, this article focusses on another key theme identified in our qualitative study of 22 Australian grandparents, issues associated with family quality of life. This article explores the impact being a critical support person had on the quality of the grandparent‟s own lives, their families and grandparent‟s ability and willingness to provide support now and in the future. Method To better understand the everyday lived experiences of the grandparents, qualitative phenomenological method was chosen (Brantlinger, Jimenz, Klinger, Pugach & Richardson, 2005). Phenomenology emphasises adopting an open approach to understanding the unique „lived experience‟ (activities, meanings, beliefs) of a particular phenomena from the perspective of those who experience it, where the “participant is the knower and it is the researcher‟s ability to engage with the participant‟s reality that enables an honest and trustworthy account of the lived experience” (p178, Paton, Martin, McClunie-Trust & Weir, 2004). Through first-person description, phenomenology provides rich and unique insight into an individual's experience and is very appropriate when exploring grandparent‟s experience of disability. Participants A total of 22 grandparents (17 women, 5 men) of children with a disability were interviewed; 18 were grandparents of one child with a disability and four had two grandchildren with a disability (one grandmother was not the biological grandmother of the child in question). Grandparents ranged in age from 55 to 75 years old (over half, n=12, were under 65) and lived within a 90 minute drive of Brisbane, the capital city of Queensland in Australia (3 in rural areas, 6 in coastal communities and 13 in urban areas). All self identified as being of Anglo-Saxon origin, having a secondary or tertiary education and being married (two were widowed). The majority were retired (10 were self-funded retirees and nine receiving government funded pensions), with many (16) reporting significant prior experience of working with children with

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disability in their pre-retirement occupations as teachers/teachers aides (10), registered nurses (4), and aged/disability support workers (2). At the time of interview in 2007, the grandchildren were all under 17 years of age and had with a wide variety of disability diagnoses – based on grandparent report, these included cerebral palsy (n=2), Down syndrome (n=3), autism/aspergers syndrome (n=4) and a range of other disabilities (ADHD, agenesis of the corpus callosum, DeGeorges syndrome, lissencephaly, placenta abruption, Rhetts syndrome, selective mutism, spina bifida, trychorhina thalanygl, ulcerative colitus; see Woodbridge et al., 2009 for specific details). Procedure The study received ethical approval from the Queensland University of Technology Human Ethics Committee and standard good practice ethical protocols were followed, with written consent obtained from each participant. A non-probability purposive sampling technique was utilised to recruit grandparents of a grandchild with a disability. Baker (1999) describes purposive sampling as useful when a number of key characteristics are used to identify participants who may be otherwise difficult to locate. In this case, participants who were recruited to the study met the following characteristics: (a) grandparents of a grandchild with a disability who was still living, (b) the grandchild was under the age of 17 years of age at time of recruitment and (c) the grandchild‟s disability was diagnosed at birth, within the first 12 months of age or as a result of illness or trauma after 12 months of age. Advertisements placed in the newsletters of older people‟s organisations in Queensland (including Council on the Ageing and National Seniors) to ensure that older people were able to respond in their own right, rather than relying on other family members to pass on details of the study. Unfortunately, a number of grandparents who responded to the advertisements were excluded from participating (n=6), as their grandchild was over the age of 17 or had passed away. The semi-structured discussion format interviews were conducted in participant‟s homes and lasted approximately 90 minutes - on three occasions, both the grandfather and the grandmother were interviewed. After beginning with background information about socio-demographic characteristics and their grandchild‟s disability diagnosis, the interview followed a semi-structured interview schedule and explored the following key areas: their recall of their experiences at the time of diagnosis, positive and negative impact of their grandchild‟s disability on their lives and personal choices, impact on family relationships and interactions, their relationship and activities with their grandchild with a disability (and whether this differed from other grandchildren), perceptions of their role and expectations for the future. Critically, whilst semi-structured interviews provide a guide of key issues to be covered, they give the interviewer the freedom to explore any emergent issues and probe with follow-up questions. All interviews were conducted by the third author, herself a grandparent. Analysis All interviews were digitally recorded and later transcribed verbatim into text for analysis, thus capturing participants‟ views, experiences and feelings in their own words. To ensure anonymity, participants‟ names were replaced with numbers and identifying information changed. Data was managed using NVivo7 computer software, but was coded and analysed manually using a thematic approach to identify categories, themes and patterns (Brantlinger et al., 2005; Liamputtong & Ezzy, 2005. The identification of themes occurs through “careful reading and re-reading of the data” (Rice & Ezzy, 1999, p258), with four key iterative steps involved in thematic data analysis: mechanics (data preparation and transcription), data

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immersion (i.e., reading and re-reading the transcripts and listening to audio-recordings), generating initial codes and emergent patterns (i.e., initial pattern recognition within the data), and searching for key themes and sub-themes (i.e., identification and categorisation of meaningful categories and themes). Emerging themes become the categories for analysis; they are reviewed, refined and then named into main themes and sub-themes (Liamputtong & Ezzy 2005). First and second level member checking occurred with participants, with follow up interviews conducted for further clarification and validation of key themes. To ensure interpretive rigor and credibility, “investigator triangulation” occurred with all three authors reading and applying an initial thematic analysis to the transcripts, discussing the data and agreeing on the final themes, which purposely include multiple excerpts from the raw data using the exact words of participants to allow readers to evaluate our thematic structures (Brantlinger et al., 2005). Previous analyses of this data have focussed on the emotional experience of being a grandparent of a grandchild with a disability (Woodbridge et al., 2009), with this article focussing on the issues associated with family quality of life and participants responses to questions exploring their role in the family, relationships with and impact on family members, and expectations for the future. Results These grandparents viewed their role as „being there‟ to support their children, consistently describing their pride in how well their children manage this unexpected and often challenging situation. However, grandparents were honest about the pressure having a child with a disability placed on their entire family. They described the significant impact on their family quality of life and how family members often delayed life goals: they personally postponed travel and retirement plans, their children had deferred career opportunities and other family members, whilst generally supportive, struggled with the change to family relationships and were sometimes jealous about the attention the family whose child had a disability received from grandparents. Focussing on the family experience, as described by grandparents, four key themes arose from the data: „Holding Their Emotions‟ (decision to be positive), „Self-Sacrifice‟ (decision to put family needs first), „Maintaining Family Relationships‟ (being the “go-between”) and „Quality of Life for Family in the Future‟ (concerns about the future). ‘Holding Their Emotions‟ The grandparents struggled with feelings of anger, disbelief and fear at the time of diagnosis and then with ongoing questions about making the best decisions for the future. Yet, whilst the diagnosis and experience was extremely stressful and emotional for all, grandparents knew that they had to be strong for their children and „hold their own emotions‟. They felt that the best way they could help their family was to be positive for their children – thus, rather than dwell on their own emotions and the question of „why us‟, grandparents purposely chose to deal with the immediacy of what was in front of them, developing an emotional toughness and resilience to work positively to influence family dynamics.

You basically think to yourself, well what can I do to contribute to him? Well you know they can‟t fully recover, but you have to think about how you can approach the situation so that you benefit both the child and the mother by being as positive as you can, particularly for the mother (#5)

I don‟t know about [husband] but I just have to get on, with what has to be done and you just get on with it. I mean my mind does wonder to the future sometimes, but I have to tell myself that it will be OK. I‟ve not to get all emotional about all that. I think it is about holding your emotions where you want them to be a bit (#19)

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‘Self-Sacrifice – putting family needs first’ Grandparents sacrificed much for their families, describing how they put plans and dreams on hold, moved houses to be closer and more able to help, and reduced their work hours so they could better support their child and grandchild with a disability. Several grandparents had intended to travel in their retirement, but were reluctant because of the long distance and duration of trips. For example, one grandfather took early retirement to be able to be there for his family when his grandson was diagnosed with Down syndrome, and many grandparents had regular child-mind days so the mothers could maintain their careers.

I feel that once you accept that you‟ve got a child or a grandchild with a disability, then your whole concept of what lies ahead of you completely changes because you know then that your life isn‟t going to pan out the way you thought it would because there is this so much extra responsibility involved with a child with a disability...because they need you. This is why I feel I can‟t just walk away. I can‟t afford to say, well I‟m sorry you‟ve got all these problems, I‟m going to walk away and retire (#5)

Well, I‟m trying to do more, that‟s one of the reasons I gave up my job. [its created] a bit of constraint about the way we lead our own lives.... our life would go in a different direction now if they didn‟t exist. I don‟t think we would stay here but the fact that we‟re 10 kilometres away and 10 minutes in the car. I think we would head for a little fishing village or something, but it‟s not an option. There‟s been once or twice I was offered a job teaching in Japan but I couldn‟t even contemplate it... I‟m not saying I‟m martyr of the year, at all, but it has been a fact, you know, you sort of think that... well it‟s not an option (#1)

Dealing with the situation also created tensions in their own marriages as some participants were unable to fully discuss the situation with their spouse or disagreed about the extent to which they should put their own dreams and aspirations „on hold‟ to support their family.

I find it hard with my husband, because he doesn‟t speak to me, we never talk about it. I don‟t know what‟s going through his mind (#2)

Actually my husband‟s been talking about moving away and particularly since we‟ve found out about [grandchild with disability] I‟ve just felt that now is not the time, so I‟m not thinking about us as far as moving away. My husband wants to retire....he wants to go away from the coast, I just said to him [daughter‟s] situation is so difficult, she needs the back-up and I‟m not prepared to go just yet. I do see myself as a hands-on grandparent to help her wherever I can (#5)

Grandparents expressed concern about sacrificing their own lives and yet being taken for granted, as one grandmother who was about to retire explained: “I‟m excited to be embarking on a new part of my life... but we do need to think a little bit about that, we don‟t want to be used as a doormat” (#14). Grandparents were often hesitant to raise these issues directly with their children as they were concerned about the repercussions. One set of grandparents moved in with the family, until another daughter intervened and encouraged them to move out because their relationship and quality of life was suffering.

We had no other interest, no other people and we are both quite outgoing and always had a huge circle of acquaintances and people and what have you, and we had no one there and we started to get cross with each other (#10)

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Maintaining family relationships - being the ‘go-between’ Grandparents described how raising a child with a disability creates unique challenges for families and emphasised the importance of “an extended family and to think outside beyond the nucleus of Mum, Dad and the kids” (#19). They explained how children with a disability are born into a family, and impact not only on the parents, but on extended family members – aunts, uncles, cousins and in-laws. Grandparents described how they served as an interface between the child with a disability and other family members, with most believing that the experience of disability was positive and had brought their extended family together.

Well, I think it‟s probably made the family stronger because you have to blend together to give each other support. It‟s really united the family (#2) We have a very close family, we all work in well together, they‟re all very supportive of one another whatever the situation but particularly since finding out that young [child with disability] has got autism, so everyone draws together nicely. I think more than anything it‟s drawn us closer to him for myself and the rest of the family, his other grandma, we all pull closer together and we do spend as much time with him as we possibly can. If we have family get-togethers, he‟s just as much cared for everybody looks out for him that he doesn‟t hurt himself or anything like that. The other kids all accept that he just the way he is and they understand, even though they‟re young themselves, all the other grandchildren, they still look out for him (#5)

A trigger for family conflict

A third of grandparents, however, acknowledged that having a child with a disability in their family created additional challenges, tension and conflict. For some families, this conflict was pre-existing whereas for others it was due primarily to the circumstances. There were two main areas of conflict for grandparents and their role. First, family members often had expectations that equal amounts of attention would be given to all children and grand children, regardless of need, and expressed anger, jealousy and possessiveness about the grandparent‟s energy and time. One grandmother explained that she needed to justify her actions as her daughters were keeping a track of the hours she spent with each: “well, it is very hard to spread my time equally. They‟re almost adding up the hours, my two daughters” (#8).

The second main area of conflict was about parent‟s expectations about appropriate ways the family should interact with their child. Many family members, particularly aunts and uncles, complained to grandparents that they wanted to be helpful but felt that „they could not do anything right‟. Miscommunication and little actions (or inactions) triggered significant family conflict, with one grandparent describing the impact of events at a recent family birthday party. The grandparents felt caught in the middle between their daughters due to their differing expectations regarding interactions and responses with the child with a disability, specifically when the younger cousins forgot the appropriate response protocol. These grandparents believed the experience of disability had really “fractured everything” in their family.

He forgot to reply to what [child with a disability] was saying. He realised that he went out and kicked the ball out there whilst she was evidently still talking to him. And that sparked off another argument that we had. We never ever have arguments.... the problem is they‟re [cousins] not getting their response, so you can‟t expect this boy to sit and talk to her. Of course, she [mother girl with disability] does expect it. We can‟t take a stand against one or the other. You know...we just have to work with them. Otherwise we lose them altogether and we don‟t want to do that (#10)

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Grandparents were saddened by this conflict, feeling as if they were being made to choose between the families. The stress of the situation also sometimes exacerbates minor family disagreements and negative personality traits, with one grandmother describing how she was treated by her son-in-law after an argument and her resolution not to come around anymore unless expressly invited.

I understand that she has to support her husband, but at the same time you don‟t treat me like that. As everyone says, they need me....Obviously with all the stress in this home, the worst parts of our personality comes to the fore and so his [son-in-law] impatience and his rudeness has come up (#8)

The „other‟ grandchildren Grandparents passionately described the importance and challenge of ensuring that the rest of grandchildren were not overlooked. In particular, one grandparent described the desire to spend more time with all their grandchildren, yet the mother of the child with a disability will not let her children do anything without their sister, with a disability, whom she does not want to „miss out‟. The grandparent struggled to understand this reasoning, explaining that she and her husband did not have the ability to care for their grandchild with a disability overnight.

We would love them to spend time with us, we would love them... I‟ve got little games, I‟d love to be able to teach them things and [daughter] will not let them come, even for an overnight stay, unless they all come. And I said [daughter] you know that is impossible. We cannot have [child with a disability] here, as we just can‟t manage her. Well if [child with a disability] can‟t come, then they can‟t come, because we are a family. Other families, a little one goes to stay overnight, it doesn‟t have to be the whole family (#10)

Quality of life for family in the future Grandparents were extremely concerned about the functioning of the family in the future, particularly given their declining health and physical abilities as they age. They understand the significant role they play in maintaining family functioning and cannot envision their children successfully managing the family workload without their on-going assistance. Circumstances mean these grandparents are involved in many every day „hands on‟ support activities, yet there are no resources, information or support to assist them and “no back–up for grandparents in situations like this” (#5). Some grandparents describe how their children did not understand or did not want to accept, their restrictions due to declining health.

I don‟t feel safe going downstairs with him. Upstairs is not so bad, you feel that if you trip... My balance isn‟t as good as it was and I‟ve told [daughter] that and she doesn‟t really want to accept that.. he‟s very difficult, its very awkward. I suppose she thinks I am big and able but you know as you get older, my back isn‟t that wonderful (#8) There must be other people in these situations. How do they deal with it? The trouble is you don‟t get a second chance with these sought of things. You deal with it the best you can... the best you can do and if you make a mistake, it is done (#10).

Grandparents describe how they struggle to do best for their entire family and worried about whether they were making the best decisions. They also expressed fear about dying, not for themselves, but because of the negative impact this would have on their family.

If I have any health scares I just get petrified...I just think I can‟t go. I will, but the thought of [daughter] coping without me is not good either, it‟s terrible. [Husband] and I have talked quite a bit about that contingency and I‟ve helped her to find other avenues but basically we can‟t do much about it (#1)

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Discussion With little known about the role and experience of grandparents in families when a child has a disability, this study has highlighted the challenges and the significant role they play in sustaining quality of life for families. Grandparent‟s views about how the experience of disability has impacted both them and their families was categorised into four key themes: Holding Own Emotions, Self-Sacrifice, Maintaining Family Quality of Life and Quality of Life for Family in the Future. Consistent with the small body of existing research (e.g., Margetts et al, 2006; Scherman et al., 1995; Woodbridge et al., 2009), grandparents were extremely involved in the lives of the family whose child has a disability, providing emotional and instrumental support to their child and grandchild. Critically, this research demonstrates that this contribution to maintaining family functioning and quality of life comes with significant cost to grandparents, both as individuals and within the family as a whole, as they work to mitigate tensions and maintain family ties (e.g., Margetts et al., 2006). Grandparents play a key role in families when a child has a disability; they have a strong sense of fulfilling their „duty‟, which they see as doing anything to keep their family both together and happy. Yet, maintaining their family‟s quality of life presents many challenges, with two key issues impacting on grandparent‟s ability to support their family – ageing and conflict. First, the reality of the ageing process meant that grandparents were anxious about what might happen when, due to either increasing frailty or death, they could no longer provide emotional and instrumental support. Second, grandparents described experiencing significant conflict – personally and within the family. Grandparents experienced personal conflict as they balanced an energy intensive support roles with other responsibilities and personal interests – many had made conscious choices to sacrifice or delay work opportunities and retirement dreams in order to be closer and more able to support their family. Whilst they did not regret these choices, they sometimes felt their children did not fully appreciate this. Within the family, there was also sometimes conflict about their contribution and appropriate family interactions – this saddened grandparents, who felt as if they were being made to choose between families. Of course, regardless of the presence of disability, many of these family functioning issues exist for all families – but these issues are often exacerbated by the presence of disability and requirements for caring which may act as a catalyst for increasing family conflict. Limitations Despite providing important new insight into grandparent‟s experiences, the study limitations need to be acknowledged. First, like much qualitative research, a purposive sampling methodology was utilised; as only „interested grandparents‟ self-nominated, it is possible that our sample over-represents either well-functioning and engaged grandparents and/or those who are experiencing family conflict. Second, we only have the grandparents‟, primarily grandmothers, perspective at one point in time and do not know the extent to which other family members would concur with their interpretation. Third, these children had a wide range of severe disabilities, and their intellectual disability was often combined with significant sensory and physical disabilities. Future research should utilise random recruitment, longitudinal and triangulation approaches to explore the experiences and views of multiple family members, particularly siblings and aunts/uncles, over time.

Implications and recommendations

Grandparents clearly make an important contribution to overall family wellbeing, with this research raising many practical and policy implications. For grandparents, there needs to be

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better information and support mechanisms – many spoke about feeling isolated and questioning their choices, but not wanting to further burden family members with their concerns. As grandparents felt that no one else truly understood what they were going through and how unprepared they had been for this challenging role, developing targeted information and resource development – such as virtual or physical psycho-educational peer support groups – is essential. Grandparents also reported living very much day-to-day, without a longer term plan for the future when they can no longer provide care – thus, there is a need for resources that enable communication within families about planning for the future and the identification/development of alternative support strategies. For families, this research highlights the importance of remaining aware about the expectations, experiences and capabilities of grandparents – often, grandparents are working hard to conceal their own concerns and maintain quality of life for all family members, necessitating a delicate balancing act to meet family needs and minimise conflict. Families need to remember that – like them - grandparents are doing the best they can in a difficult situation and would really value positive feedback and affirmation from time to time. Finally, from a public policy perspective, the important contribution of grandparents must be acknowledged. With an ageing population and changing modern family structures, grandparents are more likely than ever before to play a significant role in families – thus, the nuclear definition of family should be expanded to include grandparents, understand their critical role in the family and identify ways to better support them. This, in turn, would enable grandparents to better support the family. As there has been relatively little specific research or policy attention paid to the role and experience of grandparents, our hope is that this research helps highlight the significant contribution grandparents are making to their families, their wider communities and, ultimately, to society. They are balancing multiple social roles, putting aside personal life goals and managing disagreement and conflict within their own marriages and families to facilitate quality of life for the family whose child has a disability. Yet, although grandparents are currently willing and able to provide quality emotional and instrumental support, the reality of the ageing process means families must prepare for a future without this contribution. References Australian Bureau of Statistics (2008). Australian Social Trends: Families with a young child with a disability. Catalogue No.4102.0. Baker,T.L. (1999). Doing social research. Singapore: McGraw-Hill.

Baranowski, M. D., & Schilmoeller, G.L. (1999). Grandparents in the lives of grandchildren with disabilities: Mothers' perceptions. Education and Treatment of Children 22(4), 427 – 446

Bayat M. 2007. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research 51(9), 702-714 Branlinger, E., Jimenez, R., Klingner, J., Pugach, M., (2005). Qualitative Studies in Special Education. Exceptional Children 71(2), 195-207.

Dunne, E. & Kettler, L.J. (2007). Grandparents raising grandchildren in Australia: exploring psychological health and grandparents‟ experience of providing kinship care. International Journal of Social Welfare 17(4), 333-345.

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Heller, T., Hsieh, K. & Rowitz, L. (2000). Grandparents as supports to mothers of persons with intellectual disability. Journal of Gerontological Social Work 33(4), 23-34. Cuskelly, M. & Gunn, P. (2006). Adjustment of children who have a sibling with Down syndrome: perspectives of mothers, fathers and children. Journal of Intellectual Disability Research 50(12), 917-925. Liamputtong, P. & Ezzy, D. (2005). Qualitative Research Methods (2nd Ed.). Melbourne: Oxford University Press. Margetts, J.K., Le Courteur A., & Croom, S. (2006). Families in a state of flux: the experience of grandparents in austism spectrum disorder. Child: Care, Health & Development 32(5), 565-574. Mayes, R., Llewellyn, G., & McConnell, D. (2008). Active negotiation: mothers with intellectual disabilities creating their social support networks. Journal of Applied Research in Intellectual Disability 21(4), 341-350. Mirfin-Veitch, B., Bray, A., Watson, M. (1997). “We‟re Just that sort of Family”: Intergenerational relationships in families including children with disabilities. Family Relations 46(3), 305-311. Paton, B., Martin, S., McClunie-Trust, P.,Weir, N. (2004). Doing phenomenological research collaboratively. The Journal of Continuing Education in Nursing, 35(4), 176-181. Reichman, N.E., Corman, H. & Noonan, K. (2008). Impact of Child Disability on the Family. Maternal and Child Health Journal 12(6), 679-684. Ricci, L.A. & Hodapp, R. M. (2003). Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of Intellectual Disability Research 47(4), 273-284. Scherman, A., Gardner J. E. Brown, P., Schutter, M. (1995). Grandparents‟ adjustment to grandchildren with disabilities. Educational Gerontology 21(3), 261-273. Tepper, L.M. & Cassidy, T.M. (2004). Multidiscplinary perspectives on aging. New York: Springer Publications. Trute, B. (2003). Grandparents of children with developmental disabilities: Intergenerational support and family wellbeing. Families in Society 84(1), 119-126 Woodbridge, S., Buys, L., & Miller, E. (2009). Grandparenting a child with a disability: An emotional rollercoaster. Australasian Journal on Ageing, 28(1), 37-40.

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CHAPTER 5: PAPER 4

My Grandchild has a disability: Impact on grandparent identity, roles and relationships

Paper 4. Woodbridge, S., Buys, L., & Miller, E. (Accepted with minor revisions: 2/12/10 resubmitted to Journal of Aging Studies) „My Grandchild has a disability‟: Impact on grandparenting identity, roles and relationships.

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CHAPTER 5 JOURNAL ARTICLE 4 .


RESEARCH MANUSCRIPT WITH THE TITLE OF: My grandchild has a disability: Impact on grandparenting identity, roles & responsibilities.


1. they meet the criteria for authorship in that they have participated in the conception, execution, or interpretation, of a least that part of the publication in their field of

expertise;




4. potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or publisher of journals or other publications, and (c) the head of the responsible academic

unit and

5. they agree to the use of publication in the student‟s thesis and its publication on the

Australiasian Digital Thesis database consistent with any limitations set by the publisher requirements.


Woodbridge, S., Buys, L., Miller, E., (under review, submitted 28/07/10 to Journal of Aging Studies) My grandchild has a disability: Impact on grandparent

identity, roles & responsibilities.


Sandra Woodbridge

(candidate)

Signature

Date

Chief investigator, significant contribution to the planning of the study,

data collection and analysis, literature review and writing of the manuscript


Significant contribution to the planning of the study (as principal

supervisor) data analysis and assisted with the preparation and evaluation of the manuscript

Dr Evonne Miller

Significant contribution to the planning of the study (as associate

supervisor) data analysis and assisted with the preparation and evaluation of the manuscript



authorship.

_________________________ ___________________________________ ________ Name Signature Date

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‘My Grandchild has a disability’:

Impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents‟ sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent‟s views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying. Keywords: grandparenthood, intergenerational relationships, disability, grandparent identity, grandparent role

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Throughout history, from our tribal ancestors to the modern day „baby boomers‟, the birth of child has the potential to create a grandparent and form family relationships within and across generations. Becoming a grandparent is an expected and eagerly anticipated „rite of passage‟ for many older adults, who with increased longevity may now be grandparents for approximately a third of their lifespan (Drew et al., 1998). To date, however, our knowledge about grandparent‟s expectations, interactions and the roles they actually play in the lives of their families is extremely limited. Despite a small and growing body of research exploring grandparent‟s experiences raising grandchildren (Downie et al., 2010; Dunne & Kettler, 2008; Rodgers-Farmer, 1999), grandparenting from a geographic distance (Banks, 2009), use of online communication (Harwood, 2004) and maintaining closeness after parental divorce and remarriage (Lussier et al., 2002), very little is known about grandparent identity and the enactment of the grandparenting role – especially when the child has a disability. Thus, this research explores the experience of disability, from a grandparent‟s perspective. The Role of Grandparents Rapid societal changes in the form and function of the family, specifically increased numbers of divorced, single parent and „blended‟ families in westernised cultures, means that contemporary grandparents often play a critical role in maintaining family life and functioning – they frequently provide practical instrumental (e.g., childcare, finances) and emotional support to their children and grandchildren, facilitating intra-family communication and connections (Tomlin, 1998). The grandparent-grandchild relationship is special, with many grandparents valuing the opportunity to rectify past parenting mistakes, teach the next generation, and simply take pride in and enjoy their grandchildren (Harwood & Lin, 2000). At the same time, however, older adults may have feelings of anxiety and apprehension about the grandparent role and how best to be supportive without being „interfering‟ (Drew et al., 1998). Whilst typically enjoying the grandparenting role, older adults also often view this later life stage as an opportunity to achieve personal life and retirement dreams they may have postponed due to family and work commitments (Tepper & Cassidy, 2004). When a child is born with or acquires a disability, however, grandparents are frequently an important source of support to their family through this unexpected, emotionally-charged and stressful situation. In Australia, one in eight families have at least one child with an intellectual or developmental disability living at home, with intellectual (59%) and sensory/speech (53%) disabilities the most common (Australian Bureau of Statistics [ABS], 2008). To date, research has predominantly focussed on the experience of mothers, typically the primary caregivers, with much less known about the role and experience of other key members in the family, such as grandparents (e.g., Margetts et al, 2006). This is despite the fact that 10% of Australian primary carers report that the child‟s grandparents provide significant assistance and share in the caring responsibilities (ABS, 2008). As well as offering practical instrumental support to the family, mother‟s often report that grandparents provide emotional support in terms of being a confidant and giving advice (Heller, Hsieh & Rowitz, 2000). To date, only a handful of studies have directly explored grandparents‟ perspectives on their experience and role when their grandchild has a disability. Over a decade ago, Gardner, Scherman, Mobley, Brown and Schutter (1994) explicitly interviewed 32 American grandparents about their roles and relationships with their grandchild who has spina bifida. They found that grandparents engaged in grandchild oriented roles (e.g., play, social and

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ceremonial activities) about twice as often as parent oriented roles (e.g., baby-sitting, transport to medical appointments, provide financial assistance, perform medical and therapeutic interventions). The majority reported interactive communication, although a third reported experiencing one-way communication with little verbal response from their grandchild. Approximately half believed the experience of disability had not changed their relationship with their grandchild, but described two key changes: having to lower their expectations about „the depth and type of relationship possible with their grandchild‟ and that the reality of disability restricted the nature of the relationship, due to wheelchair inaccessibility and limited grandchild self-care skills. Interestingly, although most said there was no change or impact on their relationship with their other „typically-developing‟ grandchildren, a few felt that the extra needs of their grandchild with a disability conflicted with their desire to treat all their grandchildren equally and had negatively impacted on that relationship. There can be little doubt that grandparents are an important support for parents and play a significant role in their grandchild‟s life. For example, Nybo, Scherman and Freeman (1998) explored grandparents' role in the family when a child is deaf, exploring six family systems in North Dakota from the perspective of each of three generations (grandchild, parent, grandparent). They found that although pre-existing family dynamics and circumstances – such as geographic distance and limited finances - impacted on the nature of relationships, there appeared to be a strong unspoken understanding that grandparents „help out‟ at times of stress. More recently, Margetts, Couteur and Croom (2006) interviewed six British grandparents of children with autism and identified three key themes to explain the experience: the parental bond (caring for adult child and grandchild), striving for answers (struggling with diagnosis) and keeping intact (worrying and feeling responsible for wider family). In Australia, Woodbridge, Buys and Miller (2009) documented how 22 grandparents of children with a wide range of disabilities conceptualised the experience as „an emotional rollercoaster‟, but reported significant pride in how well their family was adjusting to the challenges of the situation. Whilst this small body of research provides invaluable insight into how grandparents support their families through a time of crisis, our knowledge about how the experience of disability might affect grandparent‟s sense of identity and enactment of their grandparent role remains limited. Theoretical Models: Grandparenting styles and identity Unfortunately, few studies have explored the experience, meaning or interactions of grandparents with their „typically-developing‟ grandchildren, let alone their role in the lives of grandchildren with a disability (e.g., Reitzes & Mutran, 2004). However, two prominent theories help explain the experience of grandparenting: styles (Neugarten & Weinstein, 1964) and identity (Kornhaber, 1996). Several decades ago, through interviews with 70 sets of grandparents about their interactions with pre-teen grandchildren, Neugarten and Weinstein (1964) developed their classic typology of five grandparenting styles: formal, fun-loving, distant, reservoirs of family wisdom and surrogate parents: „formal‟ emphasises respecting boundaries and the role of parents, „distant‟ means involvement only on ceremonial and special days (e.g., Christmas, birthdays), „fun-seeker‟ avoids authority and focusses on friendship, „reservoir of family wisdom‟ is being family historian and passing on family wisdom, whilst „surrogate parent‟ means attending to the needs of the grandchild when the parent/s are unable to. Variations and modifications of Neugarten and Weinstein‟s (1964) five styles are frequently used to describe different grand-parenting styles today, with an acknowledgement that grandparents in reality may adopt a composite style (Westheimer & Kaplan, 1998). For

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example, Weibel–Orlando (1990) described how grandparents adopt certain styles in the roles they fulfill within their families, which change depending on the circumstances for themselves and their grandchildren. Labelling the styles differently („distanced‟, „ceremonial‟, „custodial‟, „fictive‟ & „cultural conservator‟), she explained that grandparents adopt these roles based on their own experiences of grandparenting and their desire to have control in the development of inter-generational relationships with their own grandchildren.

More recently, in a three year longitudinal study of 300 grandparents and grandchildren, Kornhaber (1996) built on these roles to develop several theories explaining grandparenting: Grandparent Drive, Latent Grandparent Identity (LGI) and Functional Grandparent Identity (FGI). Grandparenting Drive (GD) is what „drives‟ some grandparents to establish and keep relationships with grandchildren, whilst others remain distant – both emotionally and physically. Kornhaber (1996, p64) described GD in terms of a “primary biologically rooted drive” that explains why grandparents feel so compelled to nurture and attend to the emotional and physical needs of their grandchild. LGI, which develops throughout a person‟s life, is best conceptualised as an individual‟s „theoretical‟ expectations and beliefs about the grandparenting role, whilst FGI is the actual styles and behaviours adopted by the grandparent following the birth of the grandchild. LGI develops throughout a person‟s life and is influenced by their own experiences as a grandchild, both positive and negative, their personality and their perceptions and views of the world. For example, as a child there may be recollections of having fun and enjoyment with a grandparent or perhaps the opposite – memories of a stern, gruff individual that they vow never to be like. FGI can be observed by reviewing the roles and responsibilities performed by grandparents within their families – for example, grandparents enacting a “fun seeking role” will engage in fun activities who their grandchildren (e.g., playing sports, going on picnics, visiting amusement parks), whilst those enacting the reservoir of family wisdom‟ role may ensure family traditions continue, such as the way birthdays and Christmas are celebrated (Falk & Falk, 2002; Kornhaber, 1996: Westheimer & Kaplan, 1998). FGI can look different within and between families due to differences in family relationships, experiences and circumstances; for example, after a divorce, grandparents may by necessity take on a „surrogate parent‟ role whereas prior to the separation they may have been more of a „fun-seeking‟ grandparent (Szinovacz, 1998).

Precisely if and how the birth of a child with a disability might affect grandparent identity or styles of grandparenting is unclear. The reality is that the majority of the current generation of grandparents would have limited experience with disability - when they were growing up children with disabilities were stigmatised and not visible or seen in public, removed from their families to spend their lives in institutions (Turnbull & Turnbull, 1990). Although societal attitudes to disability have evolved over time and changed significantly during the lifetime of today‟s grandparents, many have not considered - and are perhaps very unprepared for - the possibility and experience of caring for a child with a disability (Seligman & Darling, 1997). Thus, this article focusses on enhancing our understanding of their experience being the grandparent of a child with a disability and has two key aims. Firstly, using Neugarten and Weinstein‟s (1964) classic grandparenting styles as an initial basis for comparison, it will explore how grandparents interact with their grandchildren – focussing on their interactions with both „typically developing‟ grandchildren and the grandchild with a disability. Secondly, using Kornhaber (1996) notions of LGI and FGI, it will explore how the experience might influence the development and enactment of grandparent identity.

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Method

Participants

In total, 22 grandparents (5 men, 17 women) whose grandchild had a disability were interviewed - 18 grandparents had one grandchild with a disability and four grandparents had two grandchildren with a disability. Grandparents ranged in age from 55 to 75 years, with approximately half aged between 55 and 65 years (n=12). Most were grandparents of at least one other „typically developing‟ grandchild and one was not the biological grandmother. At the time of interview in 2007, all grandchildren with a disability were under 17 years of age and had a wide variety of disability diagnoses – nearly half of the grandchildren were diagnosed with Autism, Aspergers Syndrome, Cerebral Palsy or Down Syndrome. Table 1, based on grandparent report, summaries grandchildren‟s disability diagnoses and characteristics. Table 1: Grandchildren’s disability diagnoses and characteristics

Disability Cognitive Sensory Physical

DeGeorges Syndrome x x x Autism (x 2) x Cerebral Palsy (x 2) x x Down Syndrome (x 3) x x x Lissencephaly x x x Aspergers Syndrome (x 2) x x Trychorhina Thalanygl x x Agenesis of the corpus callosum x x x Ulcerative colitius/mental illness x x Trigeminal Neuralgia/Discoform keratitis

x x

Rhetts Syndrome x x x ADHD Spina Bifida x x x Selective Mutism x Placenta Abruption x x x

Procedure After receiving ethical approval, participants were recruited via purposive sampling and the placement of articles in the newsletters of older people‟s organisations in Queensland, Australia. Interested participants contacted the researcher, who followed standard good practice ethical and interview protocols. On 3 occasions, the grandfather and the grandmother were interviewed jointly. Semi-structured interviews, lasting 60 to 90 minutes in duration, were conducted in participant‟s homes and covered the following key areas: expectations and experiences of grandparenting role, recall of their experiences at time of diagnosis, and their relationship and activities with all their grandchildren, both with and without disabilities. Interviews were recorded and later transcribed, with this article focussing on grandparent roles and identity.

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Analysis After transcription, responses were managed and analysed with NVivo 7. Data was analysed using thematic analysis, a method for searching, identifying and categorising key categories, themes and patterns within data. An iterative process was utilised to construct a clear picture of the grandparent‟s world, with transcripts read and reread to conceptualise and categorise the data into meaningful categories and themes (Liamputtong & Ezzy, 2005). The data was examined specifically for descriptions of the grandparents‟ expectations, roles and interactions. To ensure qualitative credibility and rigor, there was peer and participant validation - all authors engaged in the analysis process and follow up interviews were conducted to seek further clarification and validation of key themes. Results Grandparents openly discussed their expectations, perceptions and experiences of grandparenting, describing how the experience of disability had affected their grandparenting role and self-identity. Three central themes emerged from the data: formation of grandparenting identity, styles of grandparenting, and role enactment - interactions with typically-developing and disabled grandchildren. Although these themes cover inter-connected issues and frequently overlap, for clarity, they are described separately. Theme 1: Formation of grandparenting identity Subconscious development of latent grandparenting identity Whilst grandparents did not readily identify with the notion that their grandparenting had been influenced by past relationships and experiences, all eventually described an individual or an experience that had in fact stayed with them, often at a subconscious level, providing a clear template for the way they would or would not enact their grandparent role. One grandmother described how her expectations had been influenced by her own experiences as a child with grandparents who were somewhat aloof and distanced, whilst another remembered fondly her „Dad‟s Mum‟ teaching her to crochet, knit and sew and commented how she „absolutely adored her and always envisioned being that sort of grandmother” (#2). Many also held a somewhat idealised view of grandparenting, with one describing her vision “of the idealised grandmother, you know with a soft knee and a lolly jar, those sort of things, I‟ve always probably wanted to be a friend for them and to be there” (#2). Grandparents‟ vision of retirement also often involved travelling or moving to their retirement dream location, and thus adopting a more „distanced‟ role in terms of grand-parenting their grandchildren. Enactment of functional grandparenting identity This latent, idealised version of grandparenting was challenged and altered by the experience of grandparenting a child with a disability. Grandparents had to re-conceptualise their expectations regarding the degree of involvement they would have and their interactions – most felt that their functional grandparenting identity (i.e., what they actually did as a grandparent) was generally consistent with their expectations, but heightened to an extreme degree due to the unusual demands of the situation. After processing their own shock and disbelief about the diagnosis, grandparents described how they saw their main role „to be there‟ to support their child and grandchild – to be positive and to help anyway they could.

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Well, it was sort of like there was a death in the family, really, because you sort of expect to have naturally good children. At first it was hard to accept, you know, to believe that it had happened to us… but once you accept it you‟re there for your daughter, you‟re there for your grandson (#2)

Integrating „disability‟ into self and grandparenting identity Grandparents worked hard to make meaning of the experience and to understand „why‟ this had happened to them and their family. They had a strong sense of responsibility and obligation towards their families, explaining how although they had not planned or expected this, they voluntarily changed their own personal life plans and made significant life decisions so as to be closer and more able to support their children. Although some believed disability had not dramatically altered their grandparenting role, describing how “well me personally, it hasn‟t sort of affected our lives, like as grandparents” (#3), all took significant pride in how well their family was managing the situation and in their own role as a key support person, which had become an integral part of their grandparenting identity.

I can‟t afford to say, well I‟m sorry you‟ve got all these problems, I‟m going to walk away and retire. [But] I know quite a few people that don‟t want to be bothered. They want now to live their own lives without encumbrances with children…I feel that once you accept that you‟ve got a child or a grandchild with a disability, then your whole concept of what lies ahead of you completely changes because you know then that your life isn‟t going to pan out the way you thought it would because there is this so much extra responsibility involved, because they need you (#5)

Notably, approximately three-quarters of these grandparents (16) had had significant prior experience of working with children with disability in their pre-retirement occupations as teachers/teachers aides (10), registered nurses (4), aged and disability support workers (2). This professional identity and knowledge enhanced grandparents‟ ability to cope with the situation and support their families, allowing them to function as a professional, sharing knowledge, skills and information that would not have been normally available to families who had a child with a disability. It gave them the skills to make early disability diagnoses, reassure family members about medical procedures and processes, and more better manage the reality of disability – for example, one grandmother who was a special education teacher described how she was the first to suspect something was wrong and because she understood he did not cope well with change, she always babysat her grandchild with Autism at his home rather than her own. In addition, several grandparents also explained how the experience of disability had changed their own behaviours and attitudes, making them less impatient and more tolerant; for example, as one explained: “I was inclined to be very impatient and I gradually learnt that you can‟t be like that… really I did change my outlook and my point of view an awful lot seeing these two, how they were” (#12). Theme 2: Styles of grandparenting When exploring the styles of grandparenting using Neugarten and Weintstein‟s (1964) typography as an initial conceptual guide, it was clear that these grandparents primarily adopted a mix of three styles in the roles they played in their families and with the child with disability: surrogate parent, fun seeking and reservoirs of family wisdom, with no evidence of grandparents enacting „formal‟ or „distant‟ styles, or any other unique grandparenting styles not captured by Neugarten and Weintstein‟s original framework. Critically, grandparents

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utilised the same style of grandparenting with their grandchild with a disability as they did with their typically developing grandchildren – although the nature, type and degree of interaction did differ depending on disability (see Theme 3). Thus, although not using this terminology in their descriptions, grandparent‟s roles and activities with their grandchild with a disability could be clearly classified into three of Neugarten and Weintstein‟s five styles of grandparenting. The „surrogate parent‟ grandparent style Grandparents frequently undertook surrogate parent roles, fulfilling important instrumental support roles within their families. They supported their family through their actions, which included babysitting, childcare, taking grandchildren on holidays and paying for books, school fees and specialist medical assistance. For example, grandparents described how they would do small errands and take the child or accompany the mother (when husbands could not get time off work) to appointments with doctors and specialists.

I think they were working, so we had to take him to the neurologists and the ear, nose and throat specialists (#13) You don‟t realise how many people have children with these disabilities and the struggles that they go through. I realise how much she has to run him around everywhere for the certain things. She is on the go constantly, which is why we help her with the housework and things like that. I have to take [child with disability] here, I have to take him there, I have to take him to [location] for his other therapy and things like that. It is fairly constant (#5)

To provide this support, however, grandparents were often sacrificing retirement dreams of travel and many were taking on more than they could actually cope with. One grandmother described the difficulties associated with caring for her grandchildren for extended times (she has them for a week a year to give the parents a break), whilst another described the challenges of always following the parent‟s rules.

The workload, yes it is heavy. That‟s how I wonder how they cope fifty-one weeks of the year. We only have them for a week at a time. It‟s not easy. People say „oh you‟re glad to have them?‟ and I say no.. [but] there‟s nobody really that will take them to care for them for too long. They‟ll go to [respite organisation] for a day, for a few hours and there‟s a friend who will take them for a few hours but to have them constantly day and night…it is draining (#4) I think he needs to be up at our level [rather than on the floor] and I find it frustrating that [mother] always leaves him on the floor and I don‟t think that‟s good for the child and that frustrates me, but you know, I‟m learning to hold my tongue… to be a lot more subtle (#2)

Grandparents viewed their „surrogate parent‟ role as essential for maintaining the wellbeing and functioning of the family, describing how their actions allowed the primary carer (usually their daughters or daughter in laws) to have some critical time for themselves: “I think, you know, that it is important for her to still have a life, to not feel trapped by the child‟s situation” (#19).

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The „fun-seeking‟ grandparent style Grandparents embraced the „fun-seeking‟ role, often striving to provide more relaxed and enjoyable intergenerational interactions than they experienced themselves. They frequently described the fun they had with their grandchild with a disability: ”I kneel down or lie down and tumble with them” (#14), “we take them out the back and let them hit ball and try to play games with them” (#9), and “exposing them to more adventures. I take them on the train, I take them on the bus” (#7). However, the experience of having a grandchild with a disability meant that grandparents often had to reconstruct their idealised grand-parenting identity and adjust their expectations about how this role was enacted. For example, the grandmother who had wanted to teach her granddaughter to knit and crochet described how she was not going to be able to teach her to do those sort of things; instead, she volunteered to share her scrap-booking skills with both her grandchild and her classmates at the special school she attended. Unfortunately, enacting this desired fun-seeking style was sometimes extremely difficult due to the nature of their grandchild‟s disability and the reactions of the general public when grandparents tried to do fun activities with their grandchildren.

Particularly now when he is so big, because he is bigger than me and you‟re still giving him care that you would for a younger child and people sort of look at you as much to say…what is going on? I took him to the movies on Monday for a special treat because it is his birthday… people look and going to the toilet by himself, that has always been one of my worries. And you see people moving away from you because of it. (#11)

The „reservoirs of family wisdom‟ grandparenting style Grandparents often saw their role as a conduit to other members of the family, both past and present. They worked to expand the knowledge and experience of the child, which resulted in them feeling much more comfortable in the presence of other family members and in situations that were new to them; grandparents described the importance of maintaining wider family bonds, recalling how they would take their grandchildren to visit family, to the country and to go camping. Unfortunately, maintaining these family bonds was sometimes challenging, as wider family members struggled to cope with and accept the reality of disability.

We have taken them to different areas, you know to widen their feel of the country and the people and their relatives and introduce them to aunts and uncles and cousins…. the cousins‟ parents don‟t always want him, but we take him whether they want him or not (#18)

Theme 3: Role enactment - interactions with grandchildren Whilst grandparents loved and cared for all their grandchildren equally, the quality and nature of the relationship and interactions were clearly affected by the disability. The degree of impact depended on grandparent‟s expectations and the type and extent of the child‟s disability, with all emphasising the importance and challenge of ensuring that typically-developing siblings were not overlooked.

You certainly do feel as if you‟re being pulled in a lot of directions… you certainly do feel as if you want to make sure that nobody misses out just because one of them has

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a disability. You are conscious of wanting to make sure that each one gets that little bit of special attention (#5)

Interactions with their grandchildren with a disability Whilst their relationship with their grandchild with a disability was not as they had anticipated, some grandparents strongly believed that there was no difference in how they interacted with them – they frequently spoke of the special place they held in their lives and hearts, with one grandparent explaining how you “end up learning to understand the individual who happens to have that disability” (#19).

To me, I treat him no different to as if he was normal. I don‟t even think of him at times being Downs Syndrome, you know I just think he‟s another grandchild, my other grandchild. I‟ve sort of managed to teach him to do things, you know, everyday things. I find that you‟ve just got to keep repeating everything (#3)

We see him just as a child who develops at his own rate. If you don‟t have expectations, then you are not disappointed and you just treat him - and I think we do treat him - just as a normal child (#17) Well, obviously we would prefer that there wasn‟t the disability but I suppose in terms of the love and affection it is a very rewarding experience. It‟s often these children who are very special… he comes and gives you a big kiss, the other grandsons are not into kissing (#11)

During the interview many were brought to tears about the situation – sadness as they grieved for what might have been and pride when their grandchild achieved the unexpected or acknowledged the grandparent in some way. For grandchildren with more severe disabilities, the disability clearly limited grandparent-grandchild interactions and activities – at both an emotional and practical level.

It‟s not as open. You can‟t be as open… you can be as loving and caring but you can‟t share a joke as readily as you can with a hearing child. I feel frustrated about it because it‟s sad (#6) It is difficult, because you don‟t get that in-depth relationship that you can with the others. We don‟t have the same type of relationship. It‟s far more on the surface because you can‟t have that interaction that you‟ve got with the other children… while I can talk to him, the conversation doesn‟t get very in-depth because you‟re not going to get anything back, apart from a wave or a smile (#2)

Interactions with „typically-developing‟ grandchildren Grandparents were extremely conscious about the needs of their other grandchildren and did their best to ensure they were not overlooked – unfortunately, they felt it was often difficult to ignore the special attention that the grandchild with a disability required. In particular, they often felt a mixture of both pride and sadness when their „typically-developing‟ grandchildren achieved „normal‟ life milestones impossible for their grandchild with a disability. Grandparents described the challenges associated with meeting the needs of all their grandchildren when one had a disability.

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I find it difficult, because I‟ve always believed in treating everyone [the same] and you can‟t. When the twins were really little, I felt that they missed out a lot, because you had to spend so much time with the little one [one with disability]. It‟s not quite so bad now, as they understand more what‟s going on… [but] it does restrict you (#2) You do have a different relationship because even though you love them all, you know that these little ones have to have special attention and the other kids have accepted that (#5)

In actuality, although grandparents adopted the same general styles of grandparenting with all grandchildren (surrogate parent, fun seeking and reservoirs of family wisdom), often how they enacted that style varied. For example, the surrogate parent activities they performed for „typically developing‟ grandchildren might involve paying for and assisting with music lessons, whilst for the grandchild with a disability, it might mean attending medical appointments, purchasing medical equipment and assisting in developing „everyday‟ skills. Grandparents also frequently described the pain of observing their young grandchildren trying – and failing – to interact with and engage with their sibling with a disability, as well as the difficulty they sometimes had in meeting parental expectations about how they should interact with all their grandchildren. For example, one mother would not let her typically-developing children do anything without their sister (who had a disability); as the grandparents could not physically care for their grandchild with a disability overnight, this meant none of the grandchildren could experience a „sleep-over‟, which was extremely painful for these grandparents to accept.

Yes, it would be so special to take one and then another one or even the two little ones and that would make them feel special. And I can‟t spend time with them. I have little things I would like to make with them and it just really hurts, it just really hurts. I could cry over that. Because they are so precious to us, those little ones, and I just to make them feel they are little people in their own right (#10)

So, my relationship with them [typically developing grandchildren] is they love seeing me. I go over there and they rush down the corridor and it‟s just terrific. I get a big smile when I go over… but the trouble is that when I am giving attention to these other three, I feel that [the parents] are also wanting me, somehow all of us, to give attention to [grandchild with a disability]. But what can you do… you can sort of talk to him, but it is all artificial, you get no response at all. But the other children they try and get a response from him, but there is nothing and they don‟t understand it. It is just constantly sad (#8)

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Discussion This research highlights how the experience and enactment of grandparenting varies, evolving depending upon the characteristics of both the grandparent and the grandchild. Grandparents described an overwhelming drive to play a positive role in their family‟s and grandchild‟s life, obtaining much joy and satisfaction from the grandparent-grandchild relationship, regardless of disability. Yet, although grandparents‟ sense of identity remains consistent, the presence of disability appears to trigger some differences in functional grandparenting identity and the ways in which grandparents enact their grandparenting role. From a theoretical perspective, this study suggests that a grandchild‟s disability does not impede or significantly alter the development of grandparenting identity or styles. Yet, grandparents‟ descriptions of their ideal (LGI) and actual (FGI) roles and interactions with all their grandchildren provide unique insight into the daily experience and impact of disability. Many grandparents had unacknowledged idealised visions and expectations of developing close relationships and doing fun activities with their grandchildren, and at some point, of going travelling and adopting a more distant style of grandparenting. Thus, their LGI was challenged by the impact of the disability. However, in their application of FGI, grandparents strived to maintain the „fun‟ interaction style they desired, they also acknowledged that they were now often providing important instrumental support in a „surrogate parent‟ role and would be unable to fulfil original retirement dreams (e.g., of travel or relocation). Grandparents philosophically accepted this change and actually took significant pride in their role as a key support person, explaining how becoming a grandparent of a child with a disability forced them to re-evaluate their own values and priorities, as well as their grandparenting identity. This study also suggests that Neugarten and Weinstein‟s (1964) classic typography of five grandparenting styles remains relevant for contemporary grandparents, even when the grandchild has a disability. Given these grandparents active involvement in their families lives, the finding that none of their interaction styles could be classified as „formal‟ or „distant‟ is not surprising; critically, however, regardless of disability, grandparent‟s endeavoured to enact the same styles of grandparenting in all their grandparent-grandchild relationship: surrogate parent, fun-loving and reservoirs of family wisdom. What did differ was the context and nature of delivery, with grandparents providing instrumental and emotional support to all their grandchildren in different ways. For example, with typically-developing grandchildren the grandparent role and style might be enacted via paying school fees or assisting with homework, whereas for grandchildren with disability it might be enacted via attending specialist appointments, paying for mobility aids or learning alternative communication skills. Whilst grandparents clearly adapted to the unique circumstances in order to best support their families and grandchildren, it is important to acknowledge that some issues are unique to having a child with a disability and some are universal challenges all grandparents must negotiate. For example, grandparents explained the difficulty of following parents‟ rules and caring for their grandchildren with a disability for extended times, yet, fulfilling these expectations is often difficult for all grandparents, regardless of disability (Tepper & Cassidy, 2004). These findings are consistent with the small body of existing research (e.g., Gardner et al., 2004; Margetts et al., 2006) and highlights how fulfilling the needs of all family members, including parents, grandchildren with a disability and typically developing grandchildren, was a complex and at times tiring balancing act for grandparents. Grandparents worked to develop a significant relationship with all their grandchildren, even when the grandchild‟s disabilities

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were so severe they limited communication and personal connections. They actively monitored the impact on typically developing grandchildren, caring for them when parents were pre-occupied with the needs of the child with the disability and doing their best to ensure they were not „over-looked in the family‟. At a practical level, therefore, grandparents often put aside individual ambitions and plans to play a significant role in maintaining family functioning. Thus, it is essential that any support programs or interventions include grandparents, help them define their role and give them the skills to communicate and interact with their grandchild with a disability. Limitations & Conclusion Despite providing important insight into grandparenting identity when a child has a disability, several limitations constrain generalisability and should be considered when interpreting the results. First, the sample is relatively small and exploratory, limited to the experience of Australian grandparents only. Second, grandchildren had a diverse range of mild to severe intellectual, sensory and physical disabilities. Third, the purposive sampling and self-nomination methodology may have over-represented grandparents either experiencing extreme stress or functioning well. The fact that many of these grandparents reported significant professional experience of disability is interesting, it may have provided them with a foundation to engage with the grandchild on a range of levels and made it easier for them to maintain a consistent grandparenting identity and style. Thus, future research should utilise random recruitment to investigate the experience and role of grandparents who have limited or no experience of disability, as well as documenting the perspectives of other family members (e.g., parents, siblings and grandchildren). In conclusion, this research highlights the importance of the grandparent-grandchild relationship and the critical role of grandparents when a child has a disability. As the first study to explicitly explore how disability might impact on grandparenting identity and styles, it suggests that the grandparenting experience and role enactment may be universal with only the context and delivery varying. Given predictions that older adults may be grandparents for a third of their lifespan, our hope is that future research will explore the role of grandparents in the lives of families, strategies to enhance the lived experience of the intergenerational grandparent-grandchild relationship, both with and without the presence of disability. References Australian Bureau of Statistics (2008). Australian Social Trends: Families with a young child with a disability. Catalogue No.4102.0. http://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/4102.0Chapter4002008 Banks, S.P. (2009). Intergenerational ties across borders: Grandparenting narratives by expatriate retirees in Mexico. Journal of Aging Studies, 23: 178–187. Downie, J.M., Hay, D.A., Horner, B.J., Wichmann, H. & Hislop, A.L. (2010). Children living with their grandparents: resilience and wellbeing. International Journal of Social Welfare,19(1):8-22.

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Dunne, E.G., & Kettler, L.J., (2007). Grandparents raising grandchildren in Australia: exploring psychological health and grandparents‟ experience of providing kinship care. International Journal of Social Welfare,17(4): 333–345. Drew, L.M., Richard, M.H. & Smith, P.K. (1998). Grandparenting and its relationship to parenting. Clinical Child Psychology and Psychiatry, 3, 465-480. Falk, U., & Falk, G. (2002). Grandparents: A New Look at the Supporting Generation. New York, Prometheus Books. Gardner J.E., Scherman, A., Mobley, D., Brown, P., & Schutter, M. (1994). Grandparent‟s beliefs regarding their role and relationship with special needs grandchildren. Education & Treatment of Children 17: 185-196. Harwood, J., (2004). Relational, role and social identity as expressed in grandparents‟ personal websites. Communication Studies 55(2): 300-319. Harwood, J., & Lin, M-C. (2000). Affiliation, pride, exchange and distance in grandparents' accounts of relationships with their college-age grandchildren. Journal of Communication 50(3): 31-47. Heller, T, Hsieh, K & Rowitz, L. (2000). Grandparents as supports to mothers of persons with intellectual disability. Journal of Gerontological Social Work 33(4): 23-34. Kornhaber, A., (1996). Contemporary Grandparenting. Thousand Oaks, CA, Sage Publications. Liamputtong, P & Ezzy, D. (2005). Qualitative Research Methods (2nd Ed.). Melbourne, Oxford University Press. Lussier, G., Deater-Deckard, K., Dunn, J. & Davies, L. (2002). Support across two generations: Children's closeness to grandparents following parental divorce and remarriage. Journal of Family Psychology 16(3): 363-376. Margetts, J, Le Couteur, A, Croom, S. (2006). Families in a state of flux: the experience of

grandparents in autism spectrum disorders. Child: Care, Health and Development 32(5): 565-

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Neugarten, B.L. & Weinstein, K. (1964). The changing American grandparent. Journal of Marriage and Family 26(2): 199-204. Nybo, W.L., Scherman, A. & Freeman, P.L. (1998). Grandparents' role in family systems with a deaf child: An exploratory study. American Annals of the Deaf 143(3): 260-267. Reitzes, D.C. & Mutran, E.J. (2004). Grandparent identity, intergenerational family identity, and well-being. The Journals of Gerontology: Psychological Sciences and Social Sciences, 59(4): S213-S219. Rodgers-Farmer, A.Y. (1999). Parenting stress, depression, and parenting in grandmothers raising their grandchildren. Children and Youth Services Review 21(5): 377-388.

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Seligman, M., & Darling, R.B., (1997). Ordinary Families, Special Children: A Systems Approach to Childhood Disability (2nd Ed.) New York, The Guildford Press. Szinovacz, M.E. (1998). Handbook on Grandparenthood. Westport, CT, Greenwood Press.

Tepper, L.M. & Cassidy, T.M. (2004). Multidiscplinary perspectives on aging. New York, Springer Publications. Tomlin, A. (1998). Grandparents‟ influences on grandchildren. In Szinovacz, M. (Ed) Handbook on Grandparenthood. Westport CT, Greenwood Press. Turnbull, A.P., & Turnbull, H.R. (1990). Families, professionals, and exceptionality (2nd Ed). Columbus, OH Merrill. Weibel-Orlando, J. (1990). Grandparenting styles: Native American Perspectives. In J. Sokolovsky (Ed), The cultural context of aging: worldwide perspectives (pp109-125). New York, Bergin & Garvey. Westheimer, R.K., & Kaplan, S., (1998). Grandparenthood. New York, Routledge. Woodbridge, S., Buys, L., & Miller, E. (2009). Grandparenting a child with a disability: An emotional rollercoaster. Australasian Journal on Ageing, 28(1): 37-40.

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CHAPTER 6: GENERAL DISCUSSION AND RECOMMENDATIONS

General Discussion

Whilst grandparents often play an important role in the lives of

families and communities, to date there is limited knowledge about the roles

and relationships grandparents have with their grandchild when the child has

a disability. Despite a burgeoning literature on grandparenting and

grandparents as carers, there is relatively little literature on this specific

issue. Thus, this qualitative study from the perspective of 22 grandparents,

has provided much needed insight into the impact on family and

relationships when a grandchild has a disability. In particular, as well as

exploring grandparents‟ experiences, this research sought to examine

whether there were differences or changes in the roles and responsibilities

the grandparents have with their grandchildren who have a disability

compared with how they interact with their typically developing

grandchildren. The articles included in the previous chapters incorporated

the key findings from the research, highlighting how grandparents‟ roles and

lives are impacted and changed by the experience of disability. A critical

finding was that the experience of disability, for these grandparents and

families, had disrupted but not devastated the nature of relationships and

interactions. This chapter summarises the key findings of the articles, their

theoretical and practical implications, directions for future research and

limitations. It will discuss in more detail the experiences of these

grandparents and families, providing insight for those who may find

themselves in similar situations and information regarding the support they

may require.

Significance of the research

The present research makes a number of important contributions to

the field, as to date grandparents‟ roles and relationships within families

when a child has a disability have received very little research or policy

attention. First, a comprehensive literature review documented the changing

and critical role of grandparents over the past one hundred years,

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highlighting the often crucial role contemporary grandparents play in

maintaining families, by providing symbolic and instrumental support (Article

1). The changing demographic patterns, with both life expectancy and health

of older people increasing, means that older people may be grandparents for

a much longer time. This article provides a comprehensive overview of the

historical context of the perceptions of and roles played by grandparents in

families across many generations. A number of theoretical perspectives are

discussed in order to develop an understanding of the roles and relationships

grandparents may adopt. Critically, this article identifies that whilst there is

a breadth of knowledge available about the roles and relationships parents

may have with their own parents and their own child or children (Chan &

Elder, 2000; Cherlin & Furstenberg, 1992; Kivett, 1991), this literature

contributes little from the perspective of the grandparents themselves.

Parents often report that grandparents offer important sources of support

during crises and unexpected life events, such as when a grandchild has a

disability (Chan & Elder, 2000; Scherman, Gardner, Brown & Schutter,

1995). As this review highlighted, very little empirical research has explored

the role of grandparents in such situations and whether having a grandchild

with a disability impacts on the development and delivery of the

grandparenting role and relationships.

Second, as the first Australian study to explore the experiences of

grandparents when their grandchild has a disability, the research provides

important new knowledge about the emotional journey for grandparents

(Article 2). Critically, this research suggests that there may be some

sociocultural differences in how Australian grandparents view and enact their

grandparenting role. Consistent with a small number of existing international

studies (Margetts, Le Courteur & Croom, 2006; Scherman et al., 1995),

these Australian grandparents initially report experiencing a „double grief‟ as

they accept the diagnosis and mourn for both their child and grandchild.

However, these Australian grandparents also frequently described feeling

pride in how their children were coping with this unanticipated situation,

which they felt reflected positively on their own parenting skills, their family‟s

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values and their child‟s resilience. Moreover, whereas previous British

research suggests that grandparents in this situation often view themselves

as the family lynchpin „holding the family together‟ (Margetts et al., 2006),

these Australian grandparents view their role differently as they clearly

describe their attempts not to „overstep‟ boundaries and their support for

their child in their role as a parent of a child with a disability. One potential

and unexplored explanation for this may not be sociocultural differences per

se, but could reflect real differences in financial resources and parenting

styles. Clearly, further research with more socioeconomically detailed and

diverse samples is required to better understand how different families in

different sociocultural contexts manage the experience of disability and the

role of grandparents. My hope is that this research in the Australian context

will motivate other researchers to utilise a wider family systems approach

and focus more explicitly on the impact such systems may have on the role,

responsibilities and experiences of grandparents when a child has a

disability.

Third, this research contributes to a better understanding of the

impact having a grandchild with a disability may have on the quality of life of

not only the grandparents but the family as a whole (Article 3). Conflict and

tensions which arise as an outcome of the diagnosis can exacerbate long

standing negative relationships within families (Gardner, Scherman, Mobley,

Brown & Schutter, 1994). However at the same time, many families are able

to call on the positive regard, respect and resilience they developed over

many years to provide an environment which is supportive and nurturing.

Grandparents reported that they were often placed in a situation of

negotiating the conflict surrounding the allocation of their time and energy

between various family members. This conflict resulted in considerable stress

for many of the grandparents and, in some cases, impacted upon their

health and decisions about their future life plans (i.e., early retirement,

deferring travel). Critically, in this research, grandparents were actively

concealing their own concerns from the family and worried very much about

what would happen when they were no longer there to provide support.

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Finally, this research explored if and how having a grandchild with a

disability might impact on the specific roles, styles, identities and drive

adopted by grandparents within their families (Article 4). The focus was on

whether Kornhaber„s (1996) notion of „grandparent identity‟ might differ

between grandparents of children with disabilities and those with typically

developing grandchildren. The findings highlighted that LGI is the same,

although there were differences in the application of FGI due to the nature

of the grandchild‟s disability. That is, there was an acknowledgement that

the disability influenced the style of grandparenting that they had thought

they would adopt. Critically, these findings highlight the theoretical strength

of „grandparent identity‟, in that despite being adapted and influenced by

circumstances, grandparents‟ perception of, satisfaction with, and

implementation of their grandparenting role and identity remains. In

presenting the personal stories of these particular grandparents, this

research makes an important contribution to the field by reporting on the

ways the individual grandparents‟ identity has been influenced, not only by

their own experiences of being grandparented, but also by their experience

of grandparenting a child with a disability. It provides further evidence

confirming that it is possible for the individuals‟ grandparenting identity to

remain intact when one of their grandchildren has a disability. However, the

difference between these two situations appears to be that the identity is

often played out in different contexts than with their typically developing

grandchildren.

Overall, this research suggests that rather than changing the nature

of the relationships the grandparents have with their grandchildren, having a

grandchild with a disability provides the grandparents with the opportunity to

add an extra dimension to their commitment to their family. It further

demonstrates the resilience of older people, in particular grandparents, in

coping with challenging circumstances and developing appropriate strategies

to enhance their desire to have both instrumental and symbolic roles in the

lives of all their grandchildren. Importantly, the research sought to present

the views and perspectives of grandparents themselves; in doing so, it

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provides a unique opportunity for peer-to-peer learning on grandparenting a

child with a disability, as well as contributing further to knowledge on the

phenomena of grandparenting. The discussion integrates these findings,

focussing on their significance in the context of contemporary families,

theoretical and practical implications and recommendations for future

research.

Theoretical Implications

Historically, theories for understanding the lives of older people have

been couched in research conducted in the biological and psychological

sciences. For example Wear and Tear theory, Free Radical Theory and Error

Theory are presented in order to understand the complex changes which

occur in the body of an ageing person. On the other hand, theories which

explore the changes to cognitive functioning, the influence of memory loss

and the effect of an individual‟s personality on an older person‟s experience

of ageing have also provided important insight into the ageing process from

a psychological perspective. Importantly, Erik Erikson‟s Life Cycle approach

to psychological development has also made an important contribution to

understanding the later stages of life (Erikson, Erikson & Kivnick, 1986).

As important as these particular theoretical perspectives are, they

provide little insight into the experiences of older people as social beings,

existing and contributing to the social world around them (Minichiello,

Alexander & Jones, 1992). Sociologically theories such as social role theory,

continuity theory, disengagement theory and activity theory have made an

important contribution to the understanding of the experiences of older

people and in relation to this particular study of grandparents (Minichiello et

al., 1992).

Whilst one of the key research aims posed by this study was to

explore the impact having a grandchild with a disability may have on the

grandparents‟ identity as presented in Kornhaber‟s (1996) theory of Latent

Grandparent Identity and Functional Grandparent Identity, it was clear from

the analysis of the data that the experiences of the research participants was

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also consistent with a number of the more traditional theoretical

perspectives.

In particular, when considering Erikson‟s Life Cycle theory, the

grandparents in this study believed their roles and relationships as

grandparents within their families gave purpose and meaning to their lives

and also contributed to their overall self worth. Erikson called this stage,

generativity: a period when an older person continues to offer care and

nurturing to the next generation in order to stave off any sense of stagnation

or worthlessness (Erikson, et al., 1986). In addition, the grandparents were

able to share their experience and wisdom gained over many years, thus

leaving a living legacy for their families. Erikson described this particular

stage as integrity: a stage which, when faced with impending death, an

older person seeks to ensure that they will be remembered for their positive

contributions, rather than the more negative legacy of being frail and

dependent (Erikson et al., 1986).

From a sociological perspective, the roles and relationships adopted

by this group of grandparents within their families were very much

consistent with Social Role Theory (Rosow, 1967) and Continuity Theory

(Atchley, 1972). Social role theory suggests that the roles individuals adopt

in society play an important role in defining who they are and these roles in

turn contribute to the development of an individual‟s concept of self. As one

ages, one tends to lose more roles than are gained (Rosow, 1967). For

example, the role of worker or boss often becomes redundant at retirement

and even the role of parent undergoes significant change and re-definition as

one ages (Minichiello et al., 1992). The role of grandparent however is

defined, in the main, in a positive way and therefore many grandparents are

keen to embrace this role and to adopt behaviours which present them in a

positive light thus confirming their own positive self-concept. Grandparents,

in this particular study, certainly embraced the role of grandparent. One

grandfather took early retirement to be able to support his family when his

grandson was diagnosed with Down Syndrome, thus, willingly foregoing one

valued role for another valued role.

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Continuity Theory as presented by Atchley (1972), suggests that as

individuals age they adapt behaviours consistent with past behaviours. The

level of life satisfaction achieved is dependent on the positive correlation

between past and present behaviours. In the situation of the grandparents in

this study, it was significant that many of them (16/22) had held previous

roles in the disability or special education areas. This professional identity

and knowledge enhanced grandparents‟ ability to cope with the situation and

support their families, and to some degree, they were continuing in these

roles, using the skills and knowledge gained in their work environments to

now assist their families and their grandchildren. Interestingly, although this

significant professional experience helped in terms of mitigating some fears,

most grandparents still reported struggling with the reality of disability and

its impact on their families.

Implications for contemporary families and society

The average age of first time parents in Australia is 31 years for

males and 30 years for females while the average life expectancy of older

Australians is 79 years for males and 83 years for females. As previously

suggested these statistics suggest that many people are likely to be

grandparents for between a third to a half of their lives (ABS, 2008b). Of

course, it needs to be acknowledged that other societal factors may also

decrease the longevity of a grandparent or the involvement of biological

grandparents in the social role of grandparenthood. As the age of

motherhood continues to increase, so too does the choice by adults to

remain childless. Thus, whilst population ageing increases the possibility of

later grandparenthood, the time at which an individual will become a

grandparent will, on average, start later. In turn, grandparents may stay in

the workforce longer, experience health issues in later life and be

geographically distant from their families. Precisely how grandparents and

families will navigate such changes when a grandchild has a disability

remains to be seen, although this research has shown that at least some

grandparents will make major sacrifices (e.g., early retirement, turning down

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career opportunities, postponing retirement dreams) in order to better

support their families.

With an estimated 13% of all Australian families having a child aged

between 0-14 years with a disability (ABS, 2008a), grandparents and families

alike will benefit from research that enhances both their knowledge and their

skills, facilitating the development of stronger family relationships. The

reality is that as the rates of children with disability increase, due in part to

more advanced medical technology and interventions, many grandparents

may face a similar emotional journey to that of the participants in this study.

Unfortunately, grandparents frequently report having little access to

knowledge which prepares them for this challenging role (Cate, Hastings,

Johnson & Titus, 2007; Seligman & Darling, 1997). Thus, it is clear there

needs to be better information and support mechanisms for grandparents

who spoke about feeling isolated and questioning their choices, but not

wanting to further burden family members with their concerns. Clearly,

developing targeted information and resource development such as virtual or

physical psycho-educational peer support groups, would be one way to

better support grandparents. Importantly, this research contributes towards

filling this knowledge gap by highlighting the experiences of grandparents

whose grandchild has a disability and identifying their important contribution

to the overall wellbeing of the family. Frequently, grandparents provide

unconditional love and emotional support through difficult circumstances, not

only for their grandchild but also for their own son or daughter.

Grandparents – the critical support person in the family

The findings highlight the unique position of a grandparent as a

critical support person for both their child and their grandchild. Grandparents

clearly saw their role as supporting their own child and the family. Whilst this

support was challenging, however, they needed to deal with the possibility

that their grandchild may not be able to experience many of the

opportunities available to their other grandchildren. In addition they were

acutely aware that their own child‟s dreams and aspirations were changed as

a result of the disability. Thus, grandparents experienced „a double grief‟ as

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they grieved for „what might have been‟ for both their grandchild and child.

As one grandmother said, “there is just a sadness you carry with you all the

time. There is a double grief because you grieve for the child but you also

grieve for your child”. The ongoing challenge for all grandparents, therefore,

was to move past this „double grief‟ and accept the challenge of supporting

their child. Interestingly, international research conducted with the parents

of children with disability consistently suggests that one of the major

concerns of parents at the time of diagnosis is how their own parents (the

grandparents) will cope with the changed expectations confronting them

(Mirfin-Veitch & Bray, 1996; Schilmoeller & Baranowski, 1998; Seligman &

Darling, 1997). It appears from this research that these grandparents

successfully negotiated their changed dreams and aspirations, albeit as a

continuing and ongoing challenge.

The Emotional Rollercoaster

Consistent with the small number of existing studies (Baranowski &

Schilmoeller, 1999; Scherman et al., 1995), these Australian grandparents

also reported that having a grandchild with a disability was a very emotional

experience for them on many levels, especially at diagnosis, as they were

quite unprepared, and unsure how their relationship with their grandchild

might be affected. This „emotional rollercoaster‟ was the defining element of

their journey as many grandparents reported experiencing a range of

emotions including anger, sadness and optimism as they made sense of and

accepted the diagnosis.

Notably, however, the data suggest that the majority of these

grandparents coped reasonably well with the emotional journey that they

were unexpectedly taking. Some grandparents reported that at times they

questioned the decisions made by the parents of the child in regard to the

child‟s wellbeing. Whilst this disagreement caused them significant stress and

anxiety, none of the grandparents in the study were considering removing

their support and all were adamant that they would support their own child

in any way possible. A number of the grandparents reported that they were

at times saddened by the responses other members of the family had to

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their involvement with the grandchildren with a disability. These responses

ranged from criticism of the level of support the grandparent provided

through to criticism of the strategies the family used to cope. On these

occasions, the grandparents felt they were being asked to choose between

the families and that dealing with these emotions had been particularly

confronting for them.

Other coping strategies

One of the ways the grandparents appeared to cope with the

challenges presented by having a grandchild with a disability was to

conceptualise the situation as a „blessing‟. One participant described these

feelings in the following way “well at least you know he is surrounded by

love… what if a child, you know was born into a family that didn‟t have this”.

Another grandmother described how she often says that “in the five years he

has been on this earth, he‟s given me more happiness in that five years than

I have ever had”. In many ways, some grandparents seemed to be drawing

on the idea of ‟greater purpose‟ to find meaning. Therefore it would be

important in future research to consider the role faith and religiosity plays in

acceptance. Interestingly, grandparents also reported significant professional

and personal experience with people with disabilities and this appeared to

also play a part in their capacity to accept the challenges having a grandchild

with a disability presented. For example, “having been a special school

teacher‟s aid, I feel the job description there has probably come into play a

bit better too”. Of course, it needs to be emphasised that this was a non-

random sample; that is, interested participants responded to leaflets and

posters. Potentially, therefore, those grandparents who are coping relatively

well may be over-represented. However, the impact of previous knowledge

and skills may have on the roles, relationships and identity adopted by the

grandparent is an area that requires further research.

As well as describing the emotional journey undertaken by the

grandparents in this research, other grandparents who have a child with a

disability will be reassured and even comforted by the fact that, despite the

emotional turmoil that exists from time to time in their families, there are

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many opportunities for grandparents to develop meaningful relationships

with their grandchildren who have a disability. This research confirms that

grandparents make a significant contribution to the lives of their

grandchildren and children. Grandparents appear to re-negotiate their roles

sometimes consciously, sometimes unconsciously, in order to accommodate

their desired relationship needs with the needs of their grandchild and within

the context of the needs and aspirations of the family as a whole.

Potentially, the role and relationship with the grandchild with a disability may

actually be more meaningful, teaching the grandparent to be more accepting

of diversity, and to explore the true meaning of being a grandparent. It is

clear from the results of the research, that although the journey undertaken

by grandparents who have a grandchild with a disability is one of extreme

emotions, the grandparents are nevertheless able to fulfil their grandparent

identity. They make an important contribution to their families, their wider

communities and ultimately to society in general.

Redefining the „Grandparent‟ Identity

This research illustrates the way in which grandparents articulated

their understanding of the impact their experiences had on their particular

identity and the way this identity manifested itself in the roles and

relationships played out in their particular family. A critical finding of this

research is that there is an important role for grandparents in the lives of

their grandchild who has a disability and, with some variation, they are able

to fulfil their grandparental expectations.

Grandparents in this study were actively involved with their grandchild

with a disability and their family in much the same way that they were

involved with their other grandchildren. They performed many of the

traditional roles associated with grandparenting, contributing to their family

in both instrumental and symbolic ways (Cherlin & Furstenberg, 1986;

Neugarten & Weinstein, 1964). Critically, on the whole, their interactions

with their grandchild with a disability differed little from the roles and

relationships that they had with their other grandchildren. For example one

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grandmother described that “all the kids love coming over here and that

speaks for itself”. This finding is consistent with a small body of existing

international research (Cate et al., 2007; Findler, 2000), which suggests that

there was little difference in the level of support which grandparents

provided to their families regardless of the presence of disability.

It should be noted that many of the grandchildren who had a

disability were part of families where their brothers and sisters did not have

a disability; thus, the grandparents accepted that they would make certain

adjustments, treat all the grandchildren the same or develop specific roles

with the grandchild with the disability. For example, one grandparent

regularly took their grandchildren on holidays with them and they continued

this practice with their grandchild who had a disability: “we would take them

on holidays … they loved coming and staying and doing things and he

(grandson with a disability) always loved playing in the sand with them”.

Another participant described how she would take her grandson to concerts

and “to other things that I do because he doesn‟t get to do those things at

home”.

However, grandparents may have to reconstruct their grandparenting

identity and change their expectations. For example, one grandmother

described how she wanted to teach her grandchild to knit and crochet as her

grandmother had taught her. Whilst she had not been able to teach her

granddaughter to knit, she volunteered to share her scrap-booking and

crocheting skills with her grandchild and her classmates at the special school

she attended.

In some cases, the severity of the grandchild‟s disability meant that it

was not possible for the grandparents to be involved with the grandchild in

activities. For example, one grandchild‟s disability was so severe that the

development of visual, communication and mobility skills was significantly

limited. This is an important point: different forms of disability place different

limitations and expectations on grandparents. Unfortunately, the range and

diversity of children‟s disabilities represented in this research meant it was

impossible to fully explore if and how the extent and nature of the disability

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(e.g., visible physical disability compared to less visible disabilities) might

impact on grandparents‟ beliefs and activities, but this is an interesting focus

for future research. Indeed, several researchers (Hastings, 1997; Cate,

Hastings, Johnson & Titus, 2007) have also identified that studies which

differentiate on the basis of whether the grandchild has an intellectual or

physical disability would make an important contribution to knowledge in this

area. In this research, grandparents appeared to feel and interact in the

same manner with their grandchildren, regardless of whether it was an

physical or an intellectual disability – it was only in a handful of cases, where

the nature of the disability was so severe (e.g., lissenchephaly ) and the

child could not respond at all that there was a sense from grandparents of

limited interactions and frustration. As focussing specifically on this issue was

beyond the scope of this study, future research should explore if and how

the nature of the child‟s disability might impact on family, specifically

grandparent adaptation, interactions and physical, psychological and social

functioning. It is important to emphasise that these grandparents saw their

role as very much contributing to the overall wellbeing of the family through

supporting their own child in the decisions made for the child. This support

may be through financially supporting the family, purchasing equipment,

changing retirement plans to be closer to the family and, in one case,

purchasing property that accommodated both families. Those with more

limited financial resources, contributed to the overall wellbeing of the family

by providing parents with opportunities for “time out” and for being “a

sounding board” when times were tough.

These grandparents were conscious that they provide an excellent

role model for their own child and others who may be looking on, thus

exhibiting what Erikson would describe as “generativity” (Erikson et al.,

1986). Further, in playing such vital roles within their families, grandparents

ensure that they will leave important legacies for future generations, more

so than are left as a result of parenting their own child (Kivnick, 1982).

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Grandparents as Individuals

Grandparents, however, are not an homogenous group of people, but

individuals, who engage with their families in roles and relationships that are

quite unique. The uniqueness of this engagement may mean that a

grandparent has different roles and relationships within the same extended

family. Grandparents may report being closer to one child and their family,

describing tension and communication difficulties with others. Becoming a

grandparent of a child with a disability creates even more opportunities for

unique roles and relationships to develop between the grandparent, the

grandchild and the wider family structure. Just as importantly, it may also

present opportunities for relationships to be diminished or irretrievably

broken.

Just as families are required to negotiate increasingly complex

relationships, individuals within the family are also required to examine their

own responses to the challenges presented and will choose to adopt certain

roles and responsibilities as a consequence. When parents become

grandparents, they are perceived differently by their own child, who may be

struggling to comprehend their own changing identity (Kornhaber, 2004;

Ruoppila, 1991). The roles and relationships must be re-negotiated resulting

in grandparents having different roles and different relationships with each

of their children, and as a consequence, each of their grandchildren. This in

itself can add to the complexity of the emotional journey experienced by

grandparents.

Practical Implications

With the projected number of people 65 years and over in Australia

set to increase from the current 12% of total population to more than 25%

by the year 2050 (ABS, 2004), there will be many challenges for families in

this country. Families may be structured in quite different ways, single

parents, same sex couples, blended families, donor conceived children,

include children with disabilities and may include multiple generations of

grandparents, great grandparents and even great -great grandparents

89

(Weston et al., 2001). Individuals will be required to negotiate these complex

relationships in an environment with diminishing access to care and support

services for older people and for people with disabilities (Minichiello &

Coulson, 2005). This research contributes to the knowledge and skills of the

growing number of grandparents and their families, building their overall

resilience in the face of these challenging social times.

Practical Implications - For parents

This research suggests that grandparenting a grandchild who has a

disability can be an emotional roller coaster ride for grandparents.

Nevertheless, these grandparents were committed to continuing their roles

and relationships they had with their grandchild and to support their own

children in the process.

It is important however to acknowledge that this may not be the case

for all grandparents. The inclusion of grandparents who were not actively

involved in the lives of their grandchildren or their family may have produced

different insight into the emotional responses felt by grandparents. It is

therefore reasonable to explore the experiences of these families. A number

of writers (Baranowski & Schilmoeller 1999; King & Elder, 1995; Hagestad,

1985) found that the roles and responsibilities that grandparents have with

their grandchildren are often mitigated by the relationships they have with

their own child. It is more likely that a grandparent will have a close and

meaningful relationship with their grandchild if they report having a close

relationship with their child (Brown, 2003). This was certainly the case with

the participants in this study, all of whom reported close relationships with

their adult children, even if at times the relationship was challenged by

issues which arose around the needs of the grandchild. Given the important

role these grandparents played in supporting their child and grandchild,

resources (e.g., information and counselling services) that enable the

maintenance and development of these intergenerational family relationships

may be an important proactive action that could mitigate the fracturing of

parent-adult child relationships and ensure the development of important

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grandparent-grandchild relationships and opportunities for support. It should

be noted that grandparents with limited contact with their grandchildren

were not explicitly excluded from the study, but all these participants

reported generally positive relationships with their family both prior to and

after the experience of having a grandchild with a disability. In part, this is

potentially due to the purposive sampling technique used in this instance,

which relied on people who belonged to an older people‟s organisation

responding to a research invitation. This recruitment strategy may not have

captured the diverse range of grandparents, particularly those who have

difficult relationships with their children and grandchildren. Thus, an

important avenue for future research is to explore how grandparents with

less positive existing family relationships navigated the experience of

grandparenting a grandchild with a disability.

Practical Implications - For human service professionals

The study of these grandparents contributes to a growing

understanding of the nature of grandparent relationships in the 21st century.

With growing numbers of families experiencing changing family structures

which may be multi-generational and multi-cultural as well, it is imperative

that human service professionals understand the nature of these

relationships when working with families whether in the area of child

protection, domestic violence or healthcare. When working with families

where there are children with disability, it is imperative that human service

professionals considers the instrumental and emotional support which can be

provided to the family by grandparents, if they are available and willing.

Conversely, it is important that human service professionals also

consider the role grandparents may play in their family when working with

older people, who have grief and loss issues and who maybe experiencing

depression. Failing to obtain the full picture of an individuals‟ life, including

any attachment they may have with their grandchildren, may result in lost

opportunities for individual support and counselling.

91

Implications for an ageing society and growing numbers of grandchildren with disabilities

This study provides an important insight into the changing nature of family

relationships in the 21st century and at the same time raises many questions

about the impact projected demographic changes will have on the

relationships grandparents have with their grandchildren and in particular

when the grandchild has a disability. Whilst it is true that many women are

delaying having children, having smaller families and in some cases deciding

to remain childless, increased life expectancy of older people will mean that

opportunities for grandparents to support parents in their role will still exist.

In fact, rather than having fewer grandparents, increases in childless couples

may mean that there are fewer grandchildren (Cherlin & Furstenberg, 1986).

In the year 2000, over half of newborns (66%) had both paternal and

maternal grandparents still living compared to only a quarter (25%) at the

beginning of the 20th century (Falk & Falk, 2002). Moroever, population

projections into the 21st century suggest that increasing numbers of children

will also have great grandparents and even great-great grandparents

(Hooyman & Asuman Kiyak, 2005). Many of these grandparents will

continue working past the previous retirement age of 65 years (Salt, 2007).

Their availability to provide the level of support indicated by the

grandparents in this study to their grandchildren may not be possible, as

they may need to provide care, housing and financial support to their own

elderly parents. These issues have the capacity to impact on the overall care

and support of family members in need, and future research should explore

how families in these situations cope.

Limitations of the study

Whilst this study has done much to enhance what is known regarding

the important area of grandparenting when a grandchild has a disability, a

number of limitations exist. First, qualitative research designs do not have

the capacity to make generalisations across populations, including

grandparents whose grandchild has a disability (Kvale, 1996). The results

92

only reflect the perceptions and experiences of the 22 grandparents

interviewed. Second, purposive sampling techniques were used to recruit

participants. Neumann (1991) stated that the use of this particular strategy,

whilst appropriate in circumstances where the researcher wishes to select

participants from a specialized cohort, may be limited in capturing the

diversity of the cohort. This is likely to be relevant to this study as these

participants reported close relationships with their children and grandchildren

and were linked with formal or informal support services. Thus it is likely

that the experiences of grandparents who do not have close relationships

with their children and who are not connected with support services would

have different perspectives. In addition, Indigenous and culturally and

linguistically diverse grandparents did not volunteer to participate, as they

may not have been aware of the study. The experiences of these

grandparents are likely to be significantly different to the participants in this

study and is an important area for future research.

Third, participants in this study were asked to recall retrospectively

their thoughts, feelings and experiences from the time of birth to the

present, it is possible that due to the lapse of time, the descriptions may not

present a true and accurate representation of their experiences and

emotions. Of course, this distance also gave the participants the ability to

fully reflect on the experience and impact of having a grandchild with a

disability, although as Scott and Alwin (1998) argue “remembering is a

reconstructive process ... open to a range of distortions and re-

interpretations in light of subsequent knowledge and experience” (p. 105).

Recommendations

Need for future research

This study increases the body of knowledge about grandparenting, in

particular, the knowledge gained in respect to grandparenting when a child

has a disability especially from the perspective of the grandparent. However,

despite successfully addressing the aims of the research, a number of gaps

in knowledge still exist. As previously stated it is a limitation of this study

93

that grandparents from Indigenous and culturally diverse backgrounds were

not included. This is a significant gap that could not be addressed in this

study. In addition, the experiences of grandparents who do not have a

strong relationship with their children were not explored and remain a

significant gap in knowledge and a topic for future research.

In addition, this research identified that many grandparents adopt a

range of coping strategies when faced with the diagnosis that their

grandchild may have a disability. A number reported that they felt that their

prior knowledge and skills in the field of disability had assisted them to cope.

On the other hand, a number of the grandparents believed that it was their

capacity to draw on their faith and religious beliefs that had helped them

adopt a positive and supportive attitude in these challenging circumstances.

Future research which identifies the impact of previous disability skills and

knowledge, and the role of faith and religiosity, in the roles and

relationships, particularly when the grandchild has a disability, is

recommended. Clearly, in order to further understand the development of

grandparent roles and relationships, particularly when the grandchild has a

disability, much more research is needed – from the perspective of

grandparents in particular, but also capturing the experience and viewpoints

of all family members, particularly parents, grandchildren and extended

family members (e.g. aunts, uncles, cousins). With relatively little research

on grandparenting when a grandchild has a disability, future research should

utilize random recruitment, longitudinal and triangulation approaches to

more fully explore the grandparenting role and experience.

Recognition and support

It is apparent from this study that grandparents can provide

significant amounts of instrumental and symbolic support to their

grandchildren. Much of this support is not recognized by policy-makers or

government, despite the obvious savings to government through alternative

childcare, financial support, transport, education and the provision of respite.

A recommendation of this research is that recognition be provided to these

94

grandparents by way of subsidies for travel should they be taking their

grandchild to appointments or other services. Financial support provided to

their families which would otherwise be paid by for government or by

community agencies (which in the main are government funded) should be

recognised in calculating eligibility for government pensions or subsidies.

Access to taxi vouchers, and community transport services would also assist.

Recognition of the support grandparents provide to their grandchildren and

the challenges they face should be included in current promotional/

information programs which target grandparents, especially those who are

primary caregivers for their grandchildren. This recognition and the positive

portrayal of the significant contribution grandparents make will go a long

way towards changing the perceptions of society.

These perceptions suggest that all grandparents are frail elderly

dependent people who contribute little to their families or society. This

research has shown that, for these grandparents, this is the exception rather

than the rule.

Grandparents are our continuing tie to the near-past,

to the events and beliefs and experiences that so strongly

affect our lives and the world around us.

President Jimmy Carter – September 9, 1979 – Proclamation of National

Grandparents Day

95

LIST OF APPENDICES

Appendix A: Letter to organisations Appendix B: Ethics Information Pack

97

APPENDIX A: Letter to organisations

Dear

Sometime ago at a meeting at the Hub at Inala I spoke with you

about a research project I am conducting which involves

Grandparents. I am writing to seek your assistance in recruiting participants for the study which is part of the requirements of my

PHD. The topic is “ Exploring the relationship between grandparents and their grandchild when the child has a disability”.

Participants in this study will be grandparents whose grandchild

has a disability either diagnosed within the first 12 months of life or whose diagnosis occurred at some stage later, prior to them

turning 17 years of age.

I have enclosed a short news item and would appreciate it if you could include it in your next newsletter. I believe that this study

maybe of interest to some of the grandparents who make up the membership of your organisation. I can email an electronic version

if that would be more appropriate. Please email me your email

address to [email protected]. I have also included a copy of a flier which could be placed on noticeboards at your

meeting venues if you felt that was appropriate.

Should you have any questions regarding this item or the study please do not hesitate to contact me.

Yours faithfully,

Sandra Woodbridge

Centre for Social change Research QUT Carseldine Qld 4034

Ph 3382 1137 (w) 0413 127 256 (m)

99

APPENDIX B: Ethics Information Pack

Participant Information Sheet

Exploring the relationship between grandparents and their grandchild who has a disability

Chief Investigator: Sandra Woodbridge Centre for Social Change Research

Contact: (07) 3382 1137 (w) 32008439 (h) Supervisor: Assoc Professor Laurie Buys Centre for Social Change Research Contact No: (07) 3864 4761

Description

This project is being undertaken as part of a PhD project for Ms Sandra Woodbridge and seeks to explore the relationship grandparents have with their grandchild when the child has a disability. Grandparenthood is not a new phenomena, every time a child is born there is the potential to create a grandparent and in turn develop a significant relationship between generations. However these relationships do not exist in isolation. The nature of families and indeed society as a whole in this ever changing world can create tensions and expectations of individuals that may or may not be attainable. It is in this context that this research project will be conducted. The project seeks to identify:

The nature of grandparent/grandchild relationships

Does the relationship between grandparents and grandchild change when the child has a disability

Is this relationship different if the child acquires the disability at birth or a later age

What is the consequence of changes to the relationships between grandparents and the grandchild

Participation

Participation in this study will involve an in-depth interview which will take approximately 2 hours. The interview will be conducted at a location suitable to you. The interviews will be audio-taped, transcribed and later analysed.

Upon completion of the study, all participants will receive a summary of the key findings and outcomes of the research.

Expected benefits

Whilst this study may have no immediate benefits for yourself, your participation will contribute to

100

the overall knowledge about grandparents and their grandchildren. This knowledge will be useful in informing the community and government debates around the role of grandparents in society.

Risks

During the interview you will be asked to explore the relationship you have with your grandchild. Although unlikely, the questions may cause some discomfort or distress. If you experience these feelings, free counselling services are available either through QUT Ph 3864 2383 or Lifeline 13114. If you have concerns about any facet of the research please call Assoc Prof Laurie Buys 3864 4761.

Confidentiality

To ensure your confidentiality and anonymity:

No identifying data will be used – names of people and locations will be changed or omitted from interview records

Information collected by the researcher will be kept in a secure place

Excerpts from the interview may be included in the final research report, however under no circumstances will your name or identifying features be included.

Your identifying details will not be given to the person transcribing the data from audiotape to a computer.

Voluntary participation

Your participation in this project is voluntary. If you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty. Your decision to participate will in no way impact upon your current or future relationship with QUT.

Questions / further information

Please contact the researchers if you require further information about the project, or to have any questions answered.

Ms Sandra Woodbridge

Ph (07) 3382 1137 (w) 3200 8439 (h)

Assoc Prof Laurie Buys

Ph (07) 3864 4761 (w)

Concerns / complaints

Please contact the Research Ethics Officer on 3864 2340 or [email protected] if you have any concerns or complaints about the ethical conduct of the project.

Thank you for your assistance with this research project.

Sandra Woodbridge

Chief Investigator

mailto:[email protected]

101

Participant Information Sheet

Exploring the relationship between grandparents and their grandchild who has a disability

Chief Investigator: Sandra Woodbridge Centre for Social Change Research Contact: (07) 3200 8439 Supervisor: Assoc Professor Laurie Buys Centre for Social Change Research Contact No: (07) 3864 4761

Statement of consent By signing below, you are indicating that you:

have read and understood the information sheet about this project;

have had any questions answered to your satisfaction;

understand that if you have any additional questions you can contact the research team;

understand that you are free to withdraw at any time, without comment or penalty;

understand that you can contact the research team if you have any questions about the project, or the Research Ethics Officer on 3864 2340 or [email protected] if you have concerns about the ethical conduct of the project;

agree to participate in the project.

Name

Signature

Date / /

mailto:[email protected]

103

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