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Masoume Rambod, Farkhondeh Sharif, Zahra Molazem and Kate Khair

Abstract

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.

Open access

Masoume Rambod, Farkondeh Sharif, Zahra Molazem and Kate Khair

Abstract

Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.