Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions.
Trained volunteer counsellors ease grief in adults with ID, but asking carers to lead the same work flops.
01Research in Context
What this study did
Researchers ran a randomized trial with 60 bereaved adults with intellectual disabilities. Half got weekly one-to-one counselling from trained volunteers. The other half joined a carer-led group where staff ran activities and talked about grief.
The team tracked mood, behavior, and quality of life for six months. They also asked carers and counsellors what worked and what did not.
What they found
The volunteer counselling group improved. Adults cried less, slept better, and joined more social activities. Carers said they seemed calmer.
The carer-led group showed no gains. Staff felt unprepared and stopped running sessions early. The study called that arm 'impracticable.'
How this fits with other research
Fahmie et al. (2013) later tested mindfulness talk-therapy for high-functioning adults with autism. Their RCT also found mood gains, showing one-to-one therapy keeps helping across developmental disabilities.
Settanni et al. (2023) showed parent coaching works in community settings, but the coach must be well-trained. Reyer et al. (2006) saw the same pattern: volunteers with solid grief training succeeded, while busy carers without training failed.
Kaur et al. (2025) map 76 small-run studies in ID and autism. Their scoping review places this 2006 trial among the few that used rigorous random assignment, underlining its rarity.
Why it matters
If you serve adults with ID, bring in outside counsellors when grief hits. One hour a week with a trained volunteer beats asking overstretched staff to run grief groups. Check local hospice or bereavement charities; many already train volunteers and will partner with you.
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02At a glance
03Original abstract
BACKGROUND: Bereaved adults with intellectual disabilities are known to experience prolonged and atypical grief which is often unrecognized. The aim of this project was to find an effective way to improve mental health and behavioural outcomes. METHODS: Subjects were randomized to two different therapeutic interventions: traditional counselling by volunteer bereavement counsellors, and an integrated intervention delivered by carers which offered bereavement specific support. Qualitative and quantitative methods were used to determine their effectiveness and efficacy. RESULTS: The counselling intervention resulted in measurable gains both clinically and in terms of quality of life; the second intervention proved impracticable in most settings and no improvement in mental health or behaviour resulted. CONCLUSIONS: Despite small numbers, the quantitative findings were highly significant, were supported by the qualitative data, and were of practical relevance to primary care practitioners and specialist mental health and intellectual disability staff.
Journal of intellectual disability research : JIDR, 2006 · doi:10.1111/j.1365-2788.2005.00759.x