Document Type: Original article
Community Based Psychiatric Care Research Centre, Department of Medical Surgical Nursing, School of Nursing and Midwifery, Shiraz University of Medical Sciences, Shiraz, Iran; and Student Research Committee, Shiraz University of Medical Sciences, Shiraz, Iran
Shiraz Geriatric Research Center, Department of Mental Health and Psychiatric Nursing, School of Nursing and Midwifery, Shiraz University of Medical Sciences, Shiraz, Iran
Community Based Psychiatric Care Research Centre, Department of Medical Surgical Nursing, School of Nursing and Midwifery, Shiraz University of Medical Sciences, Shiraz, Iran
Haemophilia Centre, Great Ormond Street Hospital for Children NHS Trust, London; And Professor of Health and Social Care, London South Bank University, London UK
Background: Pain, as a crucial subsequence of joint hemorrhages in hemophilia patients, is chronic, debilitating, and distracting. This study aimed to describe and interpret pain experiences of hemophilia patients in their lives.Methods: This qualitative study with hermeneutic phenomenological approach was conducted on fourteen hemophilia patients who had been referred to a hemophilia center affiliated to Shiraz University of Medical Sciences, Shiraz, Iran. The study question was “what is the meaning of pain in hemophilia patients’ lives? The data were collected through semi-structured interviews and field notes through purposeful sampling. Then, thematic analysis with van Manen’s six-step methodological framework was used. MAX.QDA qualitative software package, 2010, was used to analyze the data.Results: The three main themes that emerged in this study were “alteration in physical health”, “engagement in psychological problems”, and “impairment in social relationships”. Alteration in physical health consisted of three subthemes, namely “impairment of physical function”, “change in body physics”, and “disturbance in sleep quality”. In addition, two subthemes including “nostalgia of pain in adults with hemophilia” and “psychological distress” emerged from engagement in psychological problems. Finally, “loss of social activity” and “change in relationships” were related to impairment in social relationships.Conclusion: The present study highlighted alteration in physical health, engagement in psychological problems, and impairment in social relationship as a result of pain in hemophilia patients. Thus, healthcare providers and family members have to pay special attention to these problems. Besides, providing complementary therapy interventions is suggested for reducing these issues.