Protocol for a longitudinal qualitative study: survivors of childhood critical illness exploring long-term psychosocial well-being and needs—The SCETCH Project

INTRODUCTION: Life-threatening critical illness affects over a quarter of a million children and adolescents (0–18 years old) annually in the USA and the UK. Death from critical illness is rare; however, survivors and their families can be exposed to a complex array of negative physical, psychological and social problems. Currently, within the literature, there is a distinct paucity of child and adolescent survivor self-reports, thus limiting our understanding of how survivors perceive this adversity and subsequently cope and grow in the long-term following their critical illness. This study aims to explore and understand psychosocial well-being and needs of critical illness survivors, 6–20 months post paediatric intensive care admission. METHODS AND ANALYSIS: A longitudinal, qualitative approach will provide a platform for a holistic and contextualised exploration of outcomes and mechanisms at an individual level. Up to 80 participants, including 20 childhood critical illness survivors and 60 associated family members or health professionals/teachers, will be recruited. Three interviews, 7–9 weeks apart, will be conducted with critical illness survivors, allowing for the exploration of psychosocial well-being over time. A single interview will be conducted with the other participants enabling the exploration of contextual information and how psychosocial well-being may inter-relate between critical illness survivors and themselves. A ‘tool box’ of qualitative methods (semi-structured interviews, draw and tell, photo-elicitation, graphic-elicitation) will be used to collect data. Narrative analysis and pattern matching will be used to identify emergent themes across participants. ETHICS AND DISSEMINATION: This study will provide an insight and understanding of participants’ experiences and perspectives of surviving critical illness in the long term with specific relation to their psychosocial well-being. Multiple methods will be used to ensure that the findings are effectively disseminated to service users, clinicians, policy and academic audiences. The study has full ethical approval from the East Midlands Research Ethics Committee and has received National Health Service (NHS) governance clearance.