Handing the power to family carers through Positive Behavioural Support (PBS) resources
I am a researcher, so I am going to start this blog with some research findings. In 2014, Gemma Griffith (Bangor University) and I published a study where we summarised research studies from around the world in which family carers of children and adults with learning disabilities whose behaviour challenges were interviewed about their lives. Throughout the Western world, family carers talked clearly about the struggle of supporting a child or adult whose behaviour challenges. Perhaps the strongest message from the 391 family carers was that the biggest stress and area of frustration for them was the problem of accessing services for their relative that were personalised and where paid staff and professionals understood their family member.
Also from research, we know that behaviours that challenge often (although not always) emerge early in the lives of children with learning disabilities. Whenever behaviours that challenge first emerge, they typically persist for a long time – often for decades.
These research findings tell us two things very clearly. First, appropriate support is needed early in the lives of children with learning disabilities or at any time in their life when there are early signs of behaviours that challenge. Doing something early is crucial. Second, family carers need some tools to help them negotiate services and ask professionals for what their relative with behaviours that challenge needs to ensure a better quality of life for them and for the family.
One framework for individualised supports for children and adults with learning disabilities whose behaviour challenges is Positive Behavioural Support (PBS). Working with the Challenging Behaviour Foundation, as a part of the Early Intervention Project, the PBS Academy in the UK brought together a working group of family carers and PBS experts. This group talked about what family carers need to get better access to high quality PBS for their relative, and considered what we know from the research evidence I talked about earlier. The group then co-produced (family carer experts, and PBS experts working jointly) some practical PBS resources for family carers. These resources include information about what PBS is, but also how to know if a service is offering good quality PBS and what questions family carers should ask of care providers.
You can download the family carer PBS resources for free, use them yourself and pass them on to other people, here: