HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life

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Abstract

Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.

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