Support for family carers of children and young people with developmental disabilities and challenging behaviour: What stops it being helpful?

Background: Many family carers find the support they receive in respect of their child’s challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.

Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.

Results: Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals, and issues with respite provision. Concerns were also expressed about challenging behaviour specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child’s exclusion from services.

Conclusions: More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.