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

Pain: the voiceless scream in every haemophilia patient’s life AbstractPain 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. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Haemophilia Practice de Gruyter

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

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Publisher
de Gruyter
Copyright
© 2016 Masoume Rambod, Farkhondeh Sharif, Zahra Molazem, Kate Khair, published by Sciendo
eISSN
2055-3390
DOI
10.17225/jhp00061
Publisher site
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Abstract

AbstractPain 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.

Journal

The Journal of Haemophilia Practice – de Gruyter

Published: Jan 1, 2016

References

  • Joint pain in people with haemophilia depends on joint status
  • Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia
  • Pain therapy in haemophilia in Germany. patient survey (BESTH study)
  • Pain therapy in haemophilia in Germany. patient survey (BESTH study)
  • Modern management of haemophilic arthropathy
  • The social burden and quality of life of patients with haemophilia in Italy
  • The social burden and quality of life of patients with haemophilia in Italy
  • A national study of pain in the bleeding disorders community: a description of haemophilia pain
  • Cost of care and quality of life for patients with haemophilia complicated by inhibitors: the COCIS Study Group