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

Open access


Pain is a major problem in haemophilia patients’ lives. The perspective of pain in such patients is unique and may be different from other chronic illnesses. This qualitative hermeneutic phenomenological study aims to describe and interpret pain experience of haemophilia patients. Participants were selected from a haemophilia clinic affiliated with Shiraz University of Medical Sciences, Shiraz, Iran. Taking the main theme, “pain: the voiceless scream in every moment of haemophilia life”, with two subthemes, “a life full of pain” and “describing complex pain quality”, data was collected using semi-structured in-depth interviews and field notes, and thematic analysis conducted using van Manen’s methodological framework for reflective hermeneutic interpretation. The findings indicated that pain always accompanied the lives of haemophilia patients. Participants experienced acute intense pains, accompanied by bleeding, which were described as “terrible”, “severe”, “intolerable” and “unbelievable”. As joints became damaged over time, participants experienced persistent pain that was “continuous” and “constant”. Participants also coped with ever-present pain in immobile joints, described as “intense”, “annoying” and “intolerable”. This qualitative study shows that pain is present throughout haemophilia patients’ lives and that they experience different kinds of pain, demonstrated through various descriptions. By understanding the experience of pain from the perspective of haemophilia patients, nurses and healthcare workers can provide high-quality care focused on their unique needs.

If the inline PDF is not rendering correctly, you can download the PDF file here.

  • 1. Young G Tachdjian R Baumann K Panopoulos G. Comprehensive management of chronic pain in haemophilia. Haemophilia 2014; 20: 113-20.

  • 2. Humphries TJ Kessler CM. The challenge of pain evaluation in haemophilia: can pain evaluation and quantification be improved by using pain instruments from other clinical situations? Haemophilia 2013; 19: 181-7.

  • 3. Pipe SW Valentino LA. Optimizing outcomes for patients with severe haemophilia A. Haemophilia 2007; 13 Suppl 4: 1-16.

  • 4. Witkop M Lambing A Divine G Kachalsky E Rushlow D Dinnen J. A national study of pain in the bleeding disorders community: a description of haemophilia pain. Haemophilia 2012; 18: e115-9.

  • 5. Holstein K Klamroth R Richards M et al. Pain management in patients with haemophilia: a European survey. Haemophilia 2012; 18: 743-52.

  • 6. Riley RR Witkop M Hellman E Akins S. Assessment and management of pain in haemophilia patients. Haemophilia 2011; 17: 839-45.

  • 7. Gringeri A Mantovani LG Scalone L Mannucci PM Group CS. Cost of care and quality of life for patients with haemophilia complicated by inhibitors: the COCIS Study Group. Blood 2003; 102: 2358-63.

  • 8. Kalnins W Schelle G Jost K Eberl W Tiede A. Pain therapy in haemophilia in Germany. patient survey (BESTH study). Hamostaseologie 2015; 35: 167-73.

  • 9. Raffini L Manno C. Modern management of haemophilic arthropathy. Br J Haematol 2007; 136: 777-87.

  • 10. Witkop M Lambing A Kachalsky E Divine G Rushlow D Dinnen J. Assessment of acute and persistent pain management in patients with 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 of practice: meaning-giving methods in phenomenological research and writing. 2014. Walnut Creek California: Left Coast Press.

  • 15. Lincoln Y Guba E. Naturalistic inquiry. 1985. Beverly Hills: Ca: Sage.

  • 16. Kodra Y Cavazza M Schieppati A et al. The social burden and quality of life of patients with haemophilia in Italy. Blood Transfusion= Trasfusione del Sangue 2014; 12 Suppl 3: s567-75.

  • 17. Forsyth AL Gregory M Nugent D et al. Haemophilia Experiences Results and Opportunities (HERO) Study: survey methodology and population demographics. Haemophilia 2014; 20: 44-51.

  • 18. McLaughlin JM Witkop ML Lambing A Anderson TL Munn J Tortella B. Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia. Haemophilia 2014; 20: 506-12.

  • 19. Garrido C Ramirez S Forsyth A Iorio A. Quality of life (QOL) and well-being of haemophilia patients and parents managing haemophilia: HERO study analysis. Haemophilia 2012; 18: 177.

  • 20. Rambod M Forsyth K Sharif F Khair K. Assessment and management of pain in children and adolescents with bleeding disorders: a crosssectional study from three haemophilia centres. Haemophilia 2015; accepted article.

  • 21. Elander J. A review of evidence about behavioural and psychological aspects of chronic joint pain among people with haemophilia. Haemophilia 2014; 20: 168-75.

  • 22. Beeton K Neal D Lee C. An exploration of health-related quality of life in adults with haemophilia--a qualitative perspective. Haemophilia 2005; 11: 123-32.

Journal information
Cited By
All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 278 139 6
PDF Downloads 183 86 5