To describe the use of an innovative, multimethodological approach to exploring the day-to-day experiences of boys across a wide age range to better understand the effects of modern haemophilia treatment on their lives.Background
Children and young people with severe haemophilia can now be treated with prophylaxis and potentially have a lifestyle close to that of those without haemophilia. However, boys frequently describe living with haemophilia as burdensome.Data sources
The study, based on a grounded theory approach, was conducted with boys aged four to 16 years old, using research methods that included photo-elicitation, ‘draw and write’ techniques, focus groups run by participant co-researchers and individual interviews.Review methods
Grounded theory was used to enable rich data capture, through reshaping of research questions as theory developed.Discussion
The effectiveness of the methods used is discussed, along with consideration of the issues raised.Conclusion
These methods are effective for use with children. They can result in robust data and are also fun for child participants.Implications for research/practice
Understanding life with chronic disease from a child's perspective can improve clinical care through a better understanding of health behaviour and lifestyle implications.