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Boys and parents’ perceptions of living with haemophilia and an inhibitor


This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study. Commentary, J Haem Pract 2014;1(1):23.

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Living with mild haemophilia and care after a bleed – a qualitative study

. Haemophilia 2010; 16(4): 592-6. doi: 10.1111/j.1365-2516.2009.02189.x. 9. Beeton K, Neal D, Lee C. An exploration of health-related quality of life in adults with haemophilia: a qualitative perspective. Haemophilia 2005; 11(2): 123-32. 10. Walsh M, Macgregor D, Stuckless S, et al. Health-related quality of life in a cohort of adult patients with mild hemophilia A. J Thromb Haemost 2008; 6(5): 755-61. doi: 10.1111/j.1538-7836.2008.02929.x. 11. Husserl E. The crisis of European sciences and transcendental phenomenology: An

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Pain: the voiceless scream in every haemophilia patient’s life

haemophilia. Haemophilia 2011; 17: 612-9. 11. van Genderen FR, Fischer K, Heijnen L, et al. Pain and functional limitations in patients with severe haemophilia. Haemophilia 2006; 12: 147-53. 12. Hilberg T, Czepa D, Freialdenhoven D, Boettger MK. Joint pain in people with haemophilia depends on joint status. Pain 2011; 152: 2029-35. 13. van Manen M. Researching lived experience: Human science for an action sensitive pedagogy. 1990. New York, NY: State University of New York Press. 14. van Manen M. Phenomenology

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Pain self-management experiences in haemophilia patients: a qualitative study

analysis. BMC Fam Pract 2012; 13: 122. 20. Polit DF, Beck CT. Nursing research: Generating and assessing evidence for nursing practice. Tenth ed. New York, Baltimore, Philadelphia: Lippincott William & Wilkins; 2017. 21. van Manen M. Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Walnut Creek, California: Left Coast Press, Inc; 2014. 22. van Manen. Researching lived experience. Albany, NY: State University of New York Press; 1997. 23. Heijnen L. The role of

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