Service Delivery

Support needs of siblings of people with developmental disabilities.

Arnold et al. (2012) · Intellectual and developmental disabilities 2012
★ The Verdict

Adult siblings of people with developmental disabilities need their own info, caregiving coaching, and a seat at the service table.

✓ Read this if BCBAs who write family training or long-term care plans.
✗ Skip if Clinicians working only with short-term, clinic-based clients.

01Research in Context

01

What this study did

K et al. asked 139 adult brothers and sisters about the help they need.

All had a sibling with a developmental disability.

They filled out open-ended surveys so themes could pop up naturally.

02

What they found

Three big needs rose to the top.

Siblings wanted clear facts about the disability.

They also wanted hands-on help and emotional backup for future caregiving.

Last, they wanted formal services redesigned with them in mind, not only parents.

03

How this fits with other research

Capio et al. (2013) extends this view by asking adults with DD themselves.

That study shows the same group wants more social and physical fun, echoing the call for better community services.

Jasmin et al. (2018) found kids with DCD and their parents often disagree on needed help.

K et al. now show adult siblings can voice a third, unique set of needs, so ignoring them skips a key informant.

Hagiwara et al. (2021) warn that adding the adult with ID as a rater lowers SIS-A scores.

Together the papers say: gather views from many family angles, then blend them, because each lens sees different gaps.

04

Why it matters

You probably focus on the client, but siblings often become lifelong caregivers.

Offer them plain-language disability fact sheets, run sibling support groups, and invite them to ISP meetings.

Small moves now build a bigger care team for the future.

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Add a one-page sibling FAQ to your next family packet and ask brothers or sisters what help they want.

02At a glance

Intervention
not applicable
Design
qualitative
Sample size
139
Population
developmental delay
Finding
not reported

03Original abstract

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Intellectual and developmental disabilities, 2012 · doi:10.1352/1934-9556-50.5.373