Continued Involvement: A Scoping Review on Family Members' Needs and Experiences Collaborating With Support Staff for Relatives With Intellectual Disabilities Living Outside the Family Home.
Families of adults with ID in residential care want true partnership with staff and vigilance around quality of life—programs should build formal collaboration protocols that honor these needs.
01Research in Context
What this study did
D'Agostino et al. (2025) read ten papers about families who still help relatives with intellectual disability living in group homes or supported apartments.
They pulled out four big themes instead of running a new experiment.
The goal was to map what families need when staff take over daily care.
What they found
Families want real teamwork, not just quick phone calls.
They worry most about quality of life and need clear ways to share concerns with staff.
The review says we still know little about how setting size, culture, or staff views change the partnership.
How this fits with other research
Samuel et al. (2024) tested a peer support program for older caregivers and saw stress drop and life quality rise. Their data give one clear model the review calls for.
Murthy et al. (2025) asked Indian caregivers what help they lack; unemployed relatives begged for peer ties. Both papers echo the review’s cry for formal buddy systems.
Cruz-Montecinos et al. (2024) looked at what makes adults with ID join lifestyle programs. Fun, choice, and co-design popped up there too, matching the family plea for respect and shared control.
Why it matters
You can act today. Add a peer-family mentor list to your intake packet. Schedule joint meetings each quarter where families, the resident, and direct staff write one shared goal. These two small moves answer the four needs the review found: true partnership, quality watch, clear voice, and ongoing link.
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02At a glance
03Original abstract
BACKGROUND: Family members' involvement in the care for their relative often continues after their relative has moved out of the family home. However, little is known about the needs of family members when collaborating specifically with support staff caring for their relative. This scoping review provides an overview of existing literature to inform future research. METHOD: The review was conducted in accordance with the PRISMA for Scoping Review statement. Seven databases were systematically searched in April 2022 (with a final update in May 2025). Studies that were published in English in peer-reviewed journals and examined the needs and experiences of family members collaborating with support staff in residential care settings were considered for inclusion. The Mixed Methods Appraisal Tool was used to assess risk of bias and a thematic synthesis was conducted to analyse the data. RESULTS: Ten articles met the inclusion criteria. Four studies focused on family members' experiences following a relative's transition from institutional or hospital settings, one study on sibling-staff collaboration, one on the roles of adult siblings, one exploring family experiences during the COVID-19 pandemic, one on parental perceptions of communication, one on family experiences postabuse inquiry and one focused on collaboration within hospital settings. The studies involved relatives with severe (n = 1), mild, severe and profound (n = 1), severe to profound (n = 1) or profound intellectual disabilities (n = 3). Four did not mention the level of intellectual disability. The synthesis yielded four analytical themes: (1) complexities in building personal relationships amidst changing contexts (n = 8), (2) navigating how to address unmet needs and the vulnerability it exposes (n = 3), (3) a desire for partnership and recognition (n = 10) and (4) a desire for staff to uphold their relative's quality of life (n = 10). DISCUSSION: This review highlights key areas for future research, including how family characteristics, disability severity and living arrangement can influence needs and experiences when collaborating with support staff. Additionally, further insight is needed on what impacts the dynamic nature of family-staff relationships. Lastly, understanding the views and experiences of support staff regarding family involvement is important, as it can aid the development of collaboration that is sensitive to their specific needs.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.70074