Support Programmes for Parents of Children with Intellectual Disabilities: A Scoping Review
DOI:
https://doi.org/10.25159/2663-6549/19609Keywords:
parent support programmes, intellectual disability, neurodevelopmental disorders, children, Sustainable Development Goal 3Abstract
Intellectual disabilities (ID) are neurodevelopmental conditions characterised by deficits in adaptive and intellectual functioning. Parents of children with ID face many challenges, including chronic stress, depression, and affiliate stigma, especially in low- and middle-income countries where formal support structures are limited. The study aimed to synthesise, map, and describe available literature on support programmes for parents of children with ID. This scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews, following the Participants, Concept, Context (PCC) mnemonic, and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews checklist (PRISMA-ScR). The literature search was conducted across five databases (Academic Search Complete, PubMed (Medline), Medline (EbscoHost), CINHAL, and Web of Science), yielding 6 166 articles. Of these, 53 full-text articles were assessed for eligibility against the inclusion and exclusion criteria, and 40 were included. The data was extracted using a modified JBI data extraction sheet and synthesised using narrative synthesis. The included studies were carried out in over 14 countries, with the 71% carried out in high-income settings. Randomised Controlled Trials (RCTs) were the most common type of study design (38%). Interventions focused largely on skills development (88%) and educational support (88%) in diverse formats and contents, with clinician-led programmes being predominant (68%). Various theoretical underpinnings were incorporated, with social learning theory (18%) and mindfulness-based (13%) approaches being the most cited. This review demonstrates the potential of parent support programmes to contribute to multiple Sustainable Development Goals (SGDs), while simultaneously revealing significant gaps, particularly in low- and middle-income countries’ LMICs. Future research should focus on standardising outcome measures, exploring peer-led interventions, and conducting larger studies in diverse global contexts to promote more inclusive and equitable societies for families affected by ID.
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