RESEARCH UNDERWAY

Updated May 2006

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
Assoc 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.

Given the high level of expectation by older parents and adult siblings of the latter’s future care-taking role and parents’ 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 is 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 are 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 is 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 allow participants to talk about their everyday lives by way of a narrative, which offers the opportunity to explore the life of the participant and to develop a detailed picture of the complexities and interactions between biography and life events.

Sample and recruitment

Inclusion criteria: English-speaking adult siblings of a brother or sister with developmental disability with parent-carers aged 60 plus. Adult siblings will be recruited utilizing disability and carer organizations contact lists, adults with developmental disabilities and older parent-carers who were participants in previous research studies and personal networks.

Procedure

The sibling participants will be interviewed in the setting of their own choice and at a mutually convenient time. The interviews will be conversational in nature and will explore the current and anticipated relationship between the sibling and their brother or sister with a disability.

Analysis

Analysis of the interviews will aim to:

1. Provide accounts of how adult siblings of a brother or sister with developmental disability understand their care-taking role
2. Identify patterns in caring biographies and the influence of these on adult siblings’ expectations of, and engagement with care-taking
3. Identify patterns in how adult siblings perceive their care-taking role and their prospective views on future care-taking

The analysis of the interviews will directly inform understanding of the ways in which the care relationships between adult siblings are influenced by personal biographies and adapt or are stressed by life events which is the subject of the final research objective.

Related publications

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