Little is known about the experience of living with mild haemophilia. Clinically, many patients do not present promptly for health care following a bleed. Our aim in this study was to gain an understanding of the experiences of people living with mild haemophilia, and what influences their decision to access or not access healthcare following a bleed. A qualitative phenomenological study using semistructured, digitally recorded interviews, analysed using Colaizzi’s interpretive phenomenological analysis. Eight patients with mild haemophilia, median age 52 (range 26- 83) were interviewed. Two themes emerged: Accessing healthcare: Participants managed small bleeds or injuries at home and employed the RICE (rest, ice, compression, elevate) principle. The majority employed a “wait and see” strategy to judge whether the bleed was significant. Pain helped them determine whether they needed to access healthcare services. There was strong resistance to attending an Accident and Emergency (A&E) department because of long waiting times, perceived lack of A&E staff knowledge about managing haemophilia, and fear of not receiving medication promptly. Living with mild haemophilia: The time at which participants first knew they had mild haemophilia ranged from early childhood to adulthood. When sharing their haemophilia status with friends, schools and employers some felt supported, while others were more reticent, finding that restrictions were placed on them once it was disclosed. The impact of living with mild haemophilia varied from very little to a great deal. For most, it did not prevent active involvement in sports. Most were not concerned about having children, but some feared haemophilia being passed on to future generations. Work is required to encourage people with mild haemophilia to access health care more promptly following a bleed. Guidelines regarding the care and management of haemophilia need to be readily available to A&E staff. Recognition is needed that “mild” may not appear mild to the patient.
2. White GC 2nd, Rosendaal F, Aledort LM, et al. Factor VIII and Factor IX Subcommittee. Definitions in hemophilia. Recommendation of the scientific subcommittee on factor VIII and factor IX of the scientific and standardization committee of the International Society on Thrombosis and Haemostasis. J Thromb Haemost 2001; 85(3): 560.
3. World Federation of Hemophilia. Mild hemophilia. Revised edition. Treatment of haemophilia, no. 41. WFH; 2012. Available at http://www1.wfh.org/publication/files/pdf-1192.pdf (accessed 27 April 2014).
4. Den Uijl IE, Fischer K, Van Der Bom JG, et al. Clinical outcome of moderate haemophilia compared with severe and mild haemophilia. Haemophilia 2009; 15(1): 83-90. doi:
4. Den Uijl IE, Fischer K, Van Der Bom JG, et al. Clinical outcome of moderate haemophilia compared with severe and mild haemophilia. Haemophilia 2009; 15(1): 83-90. doi: 10.1111/j.1365-2516.2008.01837.x.)| false
6. Tagliaferri A, Di Perna C, Riccardi F, et al. The natural history of mild haemophilia: a 30-year single centre experience. Haemophilia 2012; 18(2): 166-74. doi: 10.1111/j.1365-2516.2011.02617.x.)| false
7. Nilson J, Schachter C, Mulder K, et al. A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia. Haemophilia 2012; 18(3): e120-5. doi: 10.1111/j.1365-2516.2011.02714.x.)| false
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.)| false
17. Witkop M, Lambing A, Divine G, et al. A national study of pain in the bleeding disorders community: a description of haemophilia pain. Haemophilia 2012; 18(3): e115-9. doi: 10.1111/j.1365-2516.2011.02709.x.)| false
21. Department of Health. The NHS Constitution: The NHS belongs to us all. London: DOH, 2013. Available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/170656/NHS_Constitution.pdf (accessed 1 June 2014).
22. NHS England. High quality care now and in the future. NHS England, 2013. Available at: http://www.england.nhs.uk/2013/05/09/sup-plan/ (accessed 1 June 2014).
23. Armon K, Stephenson T, Gabriel V, et al. Determining the common medical presenting problems to an accident and emergency department. Arch Dis Child 2001; 84(5): 390-2.
24. McConnell-Henry T, Chapman Y, Francis K. Member checking and Heideggerian phenomenology: a redundant component. Nurse Res 2011; 18(2): 28-37.
25. American College of Sports Medicine. Information on sprains, strains and tears. ACSM, 2011. Available at: http://www.acsm.org/docs/brochures/sprains-strains-and-tears.pdf (accessed 20 April 2014).
26. Bleakley CM, Glasgow P, MacAuley DC. PRICE needs updating, should we call the POLICE? Br J Sports Med 2012; 46(4): 220-1. doi:
27. Department of Health. Liberating the NHS: No decision without me. DOH; 2012. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberating-the-NHSNo-decision-about-me-without-me-Government-response.pdf (accessed 1 April 2014).