19 ‘nobody prepared me for this!’ parents’ experiences of seeking help and support with post-brain injury symptoms and changes in children and adolescents with acquired brain injury

Abstract

Objectives/aims This research aims to: Understand the journeys and processes that parents follow in seeking help and support for post-brain injury symptoms and changes in their children. Identify the barriers and challenges that parents face in obtaining help and support for their children and family following paediatric Acquired Brain Injury (ABI). Propose ways in which services can be more responsive to the evolving needs of children and adolescents with ABI and their families. Method Five mothers were interviewed using semi-structured interviews about their experiences of seeking help and support for post-brain injury symptoms and changes in their children. The participants’ children were 60% male, 10–16 years old and were 2–6 years post injury. Four had suffered strokes and one had a Traumatic Brain Injury. The age at injury was 4–14 years old. The interviews were audio-recorded and transcribed into 2698 units of data. The data was analysed using a Glaserian grounded theory constant comparative approach. Results After a child suffers an ABI parents feel that it is down to them to ensure that their child gets the help and support that they need. Identifying and accessing support requires a high level of research and persistence that parents experience as a ‘battle’. Obtaining support for mental-health problems is especially challenging. Common barriers include communication issues, time and funding delays, a lack of consistent professionals, not meeting the criteria for services, and a lack of local or age-appropriate services. The challenges of trying to seek help and support impact upon the whole family in terms of time, finances, socially and emotionally. However, through this process parents do become expert parents/carers. They gain new knowledge and language and they look to share this to support other parents going through similar experiences. Conclusions Providing parents with accessible psychoeducation around post-brain injury symptoms and changes in the acute period following a paediatric ABI could be a helpful intervention to make parents feel more prepared and supported in the medium to long term. More specialist paediatric ABI services that can provide integrated, holistic and developmental care are needed. Current services may need a more flexible and longer-term approach to be responsive to the needs of young people with ABI.