COMPLETED RESEARCH

Siblings

Pathways to sibling care-taking in families with an adult son or daughter with developmental disability and ageing parent-carers

Project team

Prof Gwynnyth Llewellyn
Prof Sue Balandin
Angela Dew

Background

In Australia, by far the majority of adults with developmental disabilities live in the family home accounting for around 240,000 people in Australia alone. Of these more than 11,000 currently live with their ageing parents. The parental generation is getting older and parental caregiving time becomes increasingly limited with advancing age. At the same time advances in technology, medical care and community support mean that adults with developmental disabilities have approximately the same life expectancy as their non-disabled peers. Very few adults with developmental disability are married and even fewer have children. Their friendship networks are typically limited to their parents' friends or to others in a similar situation to themselves. Without the usual sources of spousal, offspring or peer support, adults with developmental disabilities are particularly vulnerable as older parent-carers age, become incapacitated or die.

Siblings are the logical ones to step forward to fill the gap left when their parents are no longer able to care for their adult son or daughter with developmental disability. There is considerable empirical evidence from North America and growing evidence from Australasia that this is what the majority of parents’ expect when asked how they view the future care of their son or daughter with a disability. Rarely however do ageing parent-carers talk about this expectation with their adult children or make concrete plans for this substitution of care to be realised. The few studies that have explored adult siblings' perspectives on future care of their disabled brother or sister demonstrate that, at least in early adulthood, just less than half intend to play a primary care-taking role at some time in the future.

reported high levels of concern about what will happen to their son or daughter with developmental disabilities when they can no longer care for them, it is surprising that almost no attention has been given to understanding the sibling’s perspective. This project aims to fill this gap.

Aim

The overall aim of this project was to explore and understand the care-taking relationships of adult siblings in families with ageing parent-carers and an adult son or daughter with developmental disability. Specific objectives within this aim were to:

  1. Describe variations in care relationships between adult siblings in families with an adult son or daughter with developmental disability and ageing parent-carers
  2. Investigate patterns of continuity and discontinuity over time in adult siblings' relationships with their brother or sister with developmental disability
  3. Identify ways in which the care relationships between these adult siblings are influenced by: personal biographies, family expectations, birth order, gender, other siblings, existing care responsibilities, intensity of disabled sibling’s need for care, major life events, and personal support networks and health status.

Research design

The central research strategy was narrative life history. This is a qualitative technique, which is particularly well suited to understanding the lives of those whose experience departs from normative expectations. In-depth interviews employing this method allowed participants to talk about their everyday lives by way of a narrative, which offered the opportunity to explore the life of the participant and to develop a detailed picture of the complexities and interactions between biography and life.

Findings and implications

Eleven adult siblings of people with developmental disabilities participated in this study. Seven were sisters and four were brothers. Despite differences in the historical time through which participants lived, including the childhood living environments of their disabled brothers and sisters, all participants indicated a willingness to provide support to their sibling when their parents were no longer able to.

Changes in disability policy and practice in Australia from the 1970s onwards accounted for differences between a younger cohort (aged 26-34 years) and an older cohort (aged 35-66 years). Younger cohort siblings were advantaged by participating in sibling support groups, being aware of disability rights and advocacy movements and experiencing greater community acceptance of people with disability. This contrasted with the older cohort whose experiences included living with the social stigma of having a brother or sister with a disability and a greater likelihood of them being institutionalised as a child.

Participants who were the only other sibling of their disabled brother or sister reported feeling pressure to be ‘the perfect child’ along with an inherent obligation to support both their parents and their sibling. Those from larger families spoke about themselves as one member of a team of siblings who could be drawn upon for support. That said, there was usually one sibling (often the eldest sister) who was identified as the primary sibling with overall responsibility for coordinating other sibling support.

Ageing parents created concern for all participants but particularly for those in the older cohort whose parents were elderly and experiencing difficulties fulfilling their support role to their disabled son or daughter. These participants felt a sense of urgency to settle future support arrangements for their sibling.

Regardless of cohort, family size and gender, all participants reported a strong link between themselves and their disabled sibling and a commitment to provide them with support.

The implications of this study are a need to better understand the nature of adult sibling relationships where one has a developmental disability and how this translates into a support role. Future study is required to examine how siblings’ roles change as they get older and how support is negotiated within families to ensure ongoing support to the disabled family member.

Related publications

Dew, A., Llewellyn, G., & Balandin, S. (2004). Post-parental care: a new generation of sibling-carers. Journal of Intellectual and Developmental Disability, 29(2), 176-179.

Dew, A., Balandin, S., Llewellyn, G. (submitted). Exploring a life course perspective on adult sibling relationships: having a brother or sister with a lifelong disability.

Related links

Siblings Australia
Siblings Australia is a not-for-profit organisation recognizing and providing services for siblings of children with special needs.
www.siblingsaustralia.org.au

Related resources

Strohm, K. (2002) Siblings: Brothers and sisters of children with special needs. Kent Town SA: Wakefield Press

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