AIM: 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.
AIM: 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 childparticipants. 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.