General practice experiences for parents of children with intellectual disability: a systematic review

Abstract

BackgroundParents of children diagnosed with intellectual disability are at increased risk of mentaland physical health difficulties compared to other parents. They are likely to regularly seek medical treatment for their health concerns from general practice as well as on behalf of their child with intellectual disability, yet there is limited evaluation of the role general practice plays for this patient group.AimTo explore parents’ experiences of general practice support when caring for a child with intellectual disability.Design and settingSystematic review of studies reporting experiences of general practice as described by parents who care for children with intellectual disabilityMethodsDatabases were searched using a pre-defined search strategy. Studies were included based on detailed inclusion criteria, title, abstract and full-text screening. Quality assessment was conducted using the Mixed Methods Appraisal Tool (MMAT). A narrative synthesis was conducted.ResultsA total of nine studies were identified. There was a clear absence of data on parents own health experience and consultation in general practice. Findings relate to navigating general practice on behalf of their child’s health including accessibility of general practice and positive and negative experiences of general practitioners (GP).ConclusionFindings from this review highlight priority areas for research and the importance of continuity of care for this patient group. This review also considers implications for clinical services.