Family Members of Adults with Intellectual Disability Living in Residential Settings: Roles and Collaboration with Professionals. A Review of the Literature.

Natalie Zambrino,Ingeborg Hedderich

doi:10.1177/0046958021991301

Abstract

The aim of this article is to review the literature concerning the role of family members of adults with an intellectual disability living in diverse residential settings and their collaboration with residential staff. Whenever the scarce literature on the subject allowed, the focus was laid on family members of persons with additional challenging behavior. Electronic databases, reference screening, and hand search of selected journals was employed to collate literature using key terms such as family members, intellectual disability, and residential setting. By extracting relevant data of the eighteen articles that fulfilled all inclusion criteria, the following 3 main themes with each subthemes were identified inductively: roles of family members after the transition, the effects of the transition on family members, and the collaboration between the family members and professional care staff. This review presents the different roles family members partake and highlights the importance of regular open two-sided communication for collaboration with professional staff to be successful. Practical implementations are discussed and the need for further research in the field is indicated.

Highlights

For persons with intellectual disability leaving the family home is considered a step toward a more independent form of living consistent with societal norms.[1]
3 main themes with respective subthemes were identified arising from the data extraction: Roles of family members after the service user’s transition to the residential setting, effects of the new role on family members, and collaboration between family members and residential staff
Irrespective of the living setting, many family members stay involved in the life and care of service users with intellectual disability and fulfill various role, mainly complementing residential care

Summary

Introduction

For persons with intellectual disability leaving the family home is considered a step toward a more independent form of living consistent with societal norms.[1]. A clear tendency toward more variability, independence, and flexibility in living settings for persons with intellectual disability exists in Switzerland, where this study originates.[3] Still, the fulfillment of the requirements is an ongoing process with increased numbers for places in residential settings as well as in supported community living between 2011 and 2017 to an almost equal distribution.[3] Regardless of the living setting, family members represent an important social resource for people with intellectual disability[4,5] and continue to stay involved after a placement in a residential living setting of any kind, for example, Enosh et al,[6] and Mailick Seltzer et al.[7] The service user seems to benefit from this involvement because it may increase the functional achievements of children with developmental disabilities[8] and can be one factor to secure the proper functioning of care.[1] Due to well-functioning collaboration between family members and professionals, the former gain advantages as reported in studies from the field of collaboration between professionals and family members of children with intellectual disability in special education or health care. Parents who experience effective collaboration with professionals are more satisfied with the professional support provided and rate their children’s quality of life better than without effective collaboration.[9,10,11]

Objectives

Methods

Results

Discussion

Conclusion