From January to March 2026, we held six coproduction workshops with 10 individuals with acquired brain injuries and their family members at Brain Injury Matters (hereafter referred to as participants). The aim of the workshop series was to identify and understand the issues they want included in training for health and social care staff related to their experiences of leaving hospital and transitioning home after their injury.
Personal experiences
Over the six sessions, participants spoke in-depth about their experiences. While their experiences were unique, several crosscutting themes emerged. Participants often felt they lacked chances to talk about prognosis and recovery. When these opportunities did arise, individuals with acquired brain injuries said they like to be spoken to directly and treated as people first, not just talked about as patients. They also recognized the benefits of including family members in important conversations around recovery. In addition, participants wanted honest but hopeful communication about recovery. Absolute statements or overly negative predictions by health and social care staff about recovery were seen as harmful. Compassionate, jargon-free communication and strong listening skills from health and social care staff helped participants feel respected and supported.
Participants also described the long-term impact of acquired brain injury as affecting identity, emotional wellbeing, family roles and daily life. Family members often experienced exhaustion, financial strain and a lack of recognition for their contributions. Over the longer-term, participants shared stories highlighting the important but hard work of adapting to a new identity and rebuilding meaningful lives post-injury.
Participant themes
The themes and experiences shared during the workshops will form the basis for training for health and social care staff in Northern Ireland. The planned training is not about what acquired brain injury is or its medical effects. Instead, it will shine a light on the messy and complex emotional journeys that people with acquired brain injuries and their family members experience when they transition from hospital to home post-injury.
The training will take the form of three filmed skits with an accompanying training guide. The skits will be directed by Rogue Encounters, a professional theatre company, and acted by individuals with lived experience of acquired brain injuries and their family members.