Support for family carers of children and young people with intellectual disabilities and challenging behaviour. How helpful is it perceived to be?

Aim: Family carers of children with challenging behaviour reportreceiving inadequate and unhelpful support to manage their child’sbehaviour. We sought to identify why such support was often perceived as unhelpful.Method: Thirteen mothers, caring for a child with intellectual disability who also displayed challenging behaviour, were interviewed. Parental perceptions of professional support were analysed using Interpretative Phenomenological Analysis.Results: A number of themes related to generic support services, including poor information provision, problems obtaining effective services, partnership and communication, and insufficient provision of respite and speech therapy. Further issues were more specific to challenging behaviour support, including an insufficient amount of support, lack of expertise about intellectual disability and challenging behaviour, ineffective strategies, and exclusion of the child from services due to their behaviour.Conclusions: There is limited and rationed supporton offer to these carers. There is a strong need to improve training in order to increase professionalism and promote more creative working within the limited resources available. The value of more preventative support should be recognized, with more widespread adoption of effective behaviour support practices. More coordinated, collaborative and respectful joint working between professionals, as well as more family-centred support is recommended.