Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities.
Adults with IDD get only modest unpaid help, mostly for fun—use this fact to justify stronger formal-informal care plans.
01Research in Context
What this study did
Pitchford et al. (2019) asked adult brothers and sisters how much unpaid help they give to a sibling with intellectual or developmental disabilities.
The team used a written survey. They looked at help in five life areas: housing, money, health, chores, and fun.
What they found
Siblings said they give the most help with fun things like sports or movies. They give the least help with housing.
Living together and having more formal services predicted more unpaid help from brothers and sisters.
How this fits with other research
Bao et al. (2017) asked the same question to all family members, not just siblings. That study also found fun activities get the most informal help.
Syriopoulou-Delli et al. (2012) flipped the lens. They asked siblings what support they need, not what they give. Together the papers show siblings carry load and also need backup.
Samuel et al. (2024) tested a peer support program for older caregivers. Their positive results suggest one way to give siblings the backup Syriopoulou-Delli et al. (2012) said they want.
Why it matters
You can show funders these numbers to prove informal help is real but thin. Build plans that braid formal services with family strengths. Ask siblings what help they need so they can keep giving help without burning out.
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02At a glance
03Original abstract
BACKGROUND: Given decreased formal supports for adults with intellectual and developmental disabilities (IDDs) in many industrialised countries, we need to know more about informal, or natural, supports. METHOD: Adult siblings (N = 632) responded to a web-based survey about the informal supports received by their brothers/sisters with IDDs. RESULTS: Informal support was organised by the life domains of recreation, employment and housing. Adults with IDDs received the most extensive informal support in recreation and the least extensive in housing; low levels characterised all domains. Individuals with greater numbers of supporters in a domain experienced higher levels of support, as did those residing with family and who received more state-supported, formal benefits. CONCLUSIONS: Unpaid, informal supports supplement the support needs of adults with IDDs. Connections between formal and informal supports for adults with IDDs need to be examined further.
Journal of intellectual disability research : JIDR, 2019 · doi:10.1111/jir.12622