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.

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.