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

J. Koolen, W.M.W.J. van Oorsouw*, L. Verharen, P.J.C.M. Embregts

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review


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.
Original languageEnglish
JournalJournal of Intellectual Disability Research
Publication statusE-pub ahead of print - 2020


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