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.

Demographic reporting in the included studies was poor, so the review cannot say much about who these carers were. Ethnic information, additional diagnoses and living circumstances were mostly missing. Carers were overwhelmingly women: among the 150 parents where this was reported, 136 were mothers and 14 were fathers. Male carers' views are likely under-represented. Only one included study looked specifically at sibling carers, who remain under-represented. Quality assessment found that most studies did not describe the relationship between the researcher and the participant, so it is hard to judge how the researchers' own views shaped the findings. Several studies relied on people who chose to take part, often through services or voluntary organisations. Carers who are coping reasonably well, or who have no contact with services, are probably under-represented, and the review itself suggests this may be why positive aspects of caring were discussed so little. Two studies were large online surveys that added many participants but contributed little usable interview material. No included study covered people with severe and enduring mental health difficulties such as psychosis or eating disorders. Most studies did not report when their data were collected, and one collected data between 2009 and 2013, before current service models were in place.

The authors report no funding for this work and declare no conflicts of interest. They describe themselves as clinical psychologists, researchers and an assistant psychologist, some with personal experience of caring for a family member with additional needs, and say they kept reflexive journals and discussed how their own experiences might shape the analysis.

Do not read this as evidence that a whole service model, such as Intensive Support Teams or hospital admission, has failed. It is a synthesis of what 281 family carers said about their experiences across 14 small, mostly self-selecting studies, and it measured no outcomes. The finding to act on is what carers said they needed, not a verdict on any single service.