Life is a rollercoaster: an exploration of a support group for parents and carers of those with children and young people with mental health difficulties

Abstract

Abstract NHS Digital reported that one in eight children aged 5 to 19-year-old in England were identified with a mental illness, the most prevalent being emotional disorders. A diagnosis of a mental illness has a clear impact on children or young people and can also impact the health and wellbeing of family members, in particular parents and carers. We will share and discuss findings from a co-produced evaluation of a nationally recognized support group, Rollercoaster, a well-established and popular parent support group in the UK, for carers of children and young people with mental health difficulties. We will illustrate “what works” in setting up and running a support group for parents in the UK and more widely. The audience will learn what matters to the parents and carers regarding support and in terms of offering support, and how to effectively run a successful support group. Specifically, the evaluation focused on what principles could be drawn from Rollercoaster, given the wide gap in local services offering targeted support for carers. We therefore created a framework to aid in the development of other, unique support groups designed to meet the needs of their local populations. We carried out a parent/carer survey; interviews with parents/carers, support group workers and wider stakeholders; and observations of support group activities. Applying a “lesson drawing” method, we grouped what participants said around the following areas: 1) specific activities offered by Rollercoaster; 2) people who set up and run a parent/carer support group; 3) how to make a parent/carer support group successful. Engaging a wide range of parents/carers and stakeholders at every stage in the design of activities was seen as paramount. A range of skills are required by different people at various points in setting up and running the group. Success rests on constantly adapting to internal and external developments and having a bedrock of being parent led and professionally supported.