Support needs of parents with intellectual disabilities: Systematic review on the perceptions of parents and professionals

This review aimed to examine the perceptions of parents, professionals and informal network members regarding support needs of parents with intellectual disabilities (ID). In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, five databases were systematically searched and 19 qualitative studies were reviewed using thematic analyses. No data were available on the perceptions of the informal social network. Data on parents and professionals were categorized in four themes (type of support, sources of support, conditions of successful support and characteristics of support members). Data from professionals did not refer to emotional support needs or to the potential support of volunteers, friends and neighbours. Data from parents indicated a preference to be treated as ‘full’ parents, whereas professionals tended to focus on disabilities of parents. Results and implications contribute to insights into support needs of parents with ID from different perspectives and may help identify new entry points to improve future interventions and working alliances.

Working with families

The majority of people with intellectual disabilities live with family members, and those people who live elsewhere usually very much value contact with family members. Therefore, nurses who work with people with intellectual disabilities need to have a clear understanding of families and collaborative working. This chapter explores the definition of families, the impact that having a person with intellectual disabilities as a family member may have, and how this can change the life cycle of a family as families adapt to their changing circumstances. It also explores collaborative working with family members, parents with intellectual disabilities, parents of people with intellectual disabilities and siblings, as well as looking at family quality of life and social, cultural, and spiritual factors that may need to be considered.