Service Delivery

Informal Support Needs of Family Caregivers of Adults With Intellectual and Developmental Disabilities in India.

Murthy et al. (2025) · Intellectual and developmental disabilities 2025
★ The Verdict

Indian carers of adults with IDD want peer-run support clubs—especially the unemployed—and the idea aligns with U.S. evidence that caregiver-to-caregiver networks work.

✓ Read this if BCBAs helping adults with IDD in India or other low-resource regions.
✗ Skip if Clinicians who only serve young children with 1:1 funding already locked in.

01Research in Context

01

What this study did

Murthy et al. (2025) asked Indian family caregivers of adults with intellectual or developmental disabilities what informal help they still need.

They used surveys and small group talks.

Unemployed carers and families without a cerebral palsy diagnosis spoke loudest about missing support.

02

What they found

Carers said they want more peer-to-peer backup, not more paperwork.

They asked for local caregiver clubs where families can swap advice and respite.

03

How this fits with other research

Bao et al. (2017) and Pitchford et al. (2019) in the U.S. already showed that most unpaid help comes from parents and siblings, but the amount is modest.

Sumithra et al. echo the shortfall and add a new voice: unemployed Indian carers feel the gap most.

Samuel et al. (2024) proved that peer-mediated family support lifts quality of life for older carers; the India paper recommends the same fix—caregiver associations—giving the idea fresh cross-cultural backing.

D'Agostino et al. (2025) scoping review calls for more low-country data on family-staff teamwork; this Indian study answers that call by mapping pure family-to-family needs.

04

Why it matters

If you serve adults with IDD, expect their families to need more than you can bill for.

Link carers to existing parent groups or start a monthly caregiver circle.

One hour of shared stories can cut isolation faster than another brochure.

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Invite your client’s family to a local WhatsApp parent group or set up a monthly coffee meet; start with two families and grow.

02At a glance

Intervention
not applicable
Design
other
Sample size
100
Population
intellectual disability, developmental delay
Finding
not reported

03Original abstract

Informal supports reduce stress and improve well-being for family caregivers of adults with intellectual and developmental (IDD) disabilities. A strengths-based mixed methods needs assessment was conducted with a convenience sample of 100 family caregivers in India to explore their informal needs and strategies for obtaining informal supports. Results showed that fewer caregivers received informal supports, and unemployed caregivers reported higher support needs for social interaction. Caregivers of adults who also had cerebral palsy were less likely to need opportunities to meet and talk with other caregivers. Caregivers believed that having more caregiver associations would result in better care provision for themselves and their family members with IDD. Seeking supports outside government/other formal systems seems like a promising family support strategy for caregivers in India.

Intellectual and developmental disabilities, 2025 · doi:10.1352/1934-9556-63.3.200