Community Implementation of a Clinician and Caregiver Co-Led Programme to Promote the Wellbeing of Family Caregivers of Individuals With Intellectual and Developmental Disabilities.
Avra Selick, Soumya Mishra, Louisa Lok Yee Man and 9 others
PMID 42050766WHAT IT FOUND
Eleven of 12 Canadian organisations ran the CC-ACT programme for family caregivers of people with intellectual and developmental disabilities, delivering 91.8% of planned content as designed.
Over 90% of the 83 caregivers surveyed found it helpful; attendance dropped 27% by the last session.
Key findings
01The programme proved feasible to deliver in community settings: 11 of the 12 interested organisations delivered it at least once, and across the 18 programmes run the average total fidelity score was 91.8%.
02Caregivers who completed the programme rated it highly: more than 90% agreed the content was helpful, that they gained new information and usable skills, that they felt supported and valued, and that having other family caregivers as co-facilitators was a benefit.
03Teams warned they were reaching a narrow group of caregivers, mainly White, higher-income, English-speaking women already connected to services, while caregivers on low incomes, those without childcare, non-English speakers and those not already engaged in services were less likely to take part.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
No clinical outcomes are reported here. Whether the programme changes caregiver stress, anxiety or depression is not answered by this paper. The positive ratings come only from the 83 caregivers who finished the programme and returned the post-programme survey, which was 43% of participants; attendance had already fallen by 27% by the last session, so the caregivers who dropped out are not represented. All 11 organisations were in Canada and most were in Ontario, so what worked in this funding and care system may not transfer elsewhere. The organisations were not randomly selected. They had already shown interest in CC-ACT and committed to funding the initial training, so implementation may be harder where that interest and leadership support do not exist. The design could not calculate what proportion of the caregivers who might have benefited actually took part, so the reach of the programme is unknown. Some parts of the study ran during the COVID-19 pandemic, which the authors say may have affected implementation. Delivery depended on grant funding, stipends, central coaching and shared materials; several teams said they could not sustain the programme once those supports were withdrawn.
Declared interests
The authors declare no conflicts of interest. The work was funded by Kids Brain Health Network, Brain Canada, the Azrieli Foundation and the Public Health Agency of Canada. Participating organisations received a stipend of $2000 or $3750 depending on the grant funding source, and the paper notes that facilitator training is currently paid for through a fee-for-service model while other central supports come from grants, philanthropy and volunteerism.
The easy way to misread this
Do not read this as evidence that the CC-ACT programme improves caregiver stress, depression or anxiety. This paper reports whether the programme could be run in community organisations and how participants rated it; the clinical outcomes are reported separately. The positive ratings come from the 83 caregivers who finished and filled in the survey, and by the last session attendance had already dropped by 27%.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →