“He’s hard work, but he’s worth it.” The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: A meta-synthesis of qualitative research.

Background
The purpose of this review is to synthesize the qualitative literature on the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour, with a focus on their experiences of support services.

Materials and Methods
A thorough literature search resulted in 17 studies being selected for inclusion in the meta-synthesis.

Results
Five primary themes were identified: (i) love, (ii) altered identity, (iii) crisis management, (iv) support is not just ‘challenging behaviour’ services, and (v) the future: low expectations, high hopes.

Conclusions
Carers spoke of the deep love for their family member and of the chronic strain the demands of caregiving placed upon them. Support services often caused additional problems and high levels of stress for caregivers, although there were also reports of good practice. The findings may inform clinicians and service providers about how best to support families of individuals with challenging behaviour.