Abstract
BACKGROUND: There is an increasing prevalence of children/young people with long-term conditions (LTC) in the UK due to improvements in health-care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care. OBJECTIVE: This study aimed to understand self-management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood. DESIGN: A qualitative study using grounded theory to evaluate life-experiences of children and young people with haemophilia. SETTING AND PARTICIPANTS: Thirty boys aged 4-16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group. INTERVENTION/VARIABLES: Multimethod qualitative research including age-appropriate research tools (draw and write, photo-elicitation and interviews) to facilitate data collection from children. RESULTS: Boys develop self-management skills over time. They learn from health-care professionals, their parents and other family members with haemophilia. DISCUSSION: Self-management skills (bleed recognition, self-infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes. CONCLUSION: The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self-management at a relatively young age and are experts in their own haemophilia care.