Better understanding of caregiving intentions of siblings will enable better support to be provided


Older families, where people with learning disabilities live with parents, brothers or sisters over 65, may need more support as they get older.  As life expectancy for people with learning disabilities is it may be that increasingly, siblings will assume responsibility for care.

The researchers in this study were interested to look at what factors contributed to future caregiving expectations. They used a survey methodology asking 757 siblings to complete a 163-item survey.

They found from the responses to the survey that siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if:

  • they were female,
  • had closer relationships with and lived closer to their brother or sister,
  • were the lone sibling without a disability.

Where they found siblings who expected to assume higher levels of caregiving, they found that this was the case when the parents were currently more able to care for their brother or sister with disabilities.

The authors conclude that more research into the intentions of siblings in future caregiving roles will enable service providers to consider the nature of support that might be provided.

Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities, Burke M et al in American Journal on Intellectual and Developmental Disabilities, 117, 1, 33-47.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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