Exploring the experiences of caring for a family member with intellectual disabilities displaying behaviours that challenge and/or mental health difficulties within the United Kingdom: A meta-ethnographic review

Introduction

This review aims to synthesise qualitative literature of experiences of caregiving for family members with intellectual disabilities displaying behaviours that challenge and/or mental health difficulties, within the United Kingdom.

Method

Following Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, five electronic databases (APA PsychInfo, Web of Science, PubMed, MedLine and CINAHL) were systematically searched. Analysis followed a meta-ethnographic approach.

Results

Fourteen studies were included. Three key themes and a line of argument were developed: (i) Carers Wear Many Hats; (ii) Square Services, Round Needs; (iii) A Journey of Many Lows and Some Highs.

Conclusions

Carers highlighted psychosocial strains of the multi-faceted caregiving roles—including advocacy, education and protection. One-size-fits-all approaches meant support services were more burdensome than helpful, leaving carers feeling powerless and marginalised, with limited reports of good practice. The findings can inform care services about supporting these families and individuals with idiosyncratic and intersecting needs.