Abstract
Introduction/AimHaemophilia is caused by deficiency in coagulation factor VIII or IX. Treatment with the missing coagulation factors has been available in most developed countries for several decades. The aim was to explore the experiences of adults living with severe or moderate haemophilia and their coping strategies at a single centre in Sweden.MethodThe interview study had a qualitative empirical approach and was analyzed on the basis of the method empirical phenomenological psychology. The sample included 14 participants, mean age 42 (19–80 y), who met the inclusion criteria and to saturation of information. Results: General characteristics were; All were satisfied with and grateful for access to medication. An acceptance of the disorder and willingness to live a normal life was identified among all participants. They were all content with the care provided by Haemophilia Treatment Centre (HTC) and felt supported by its multidisciplinary team. Four typologies were identified; Protective adults and assertive children during up-bringing, finding a role in social context, symptoms and treatments, fear of limited resources in the future. Task-, emotional- and avoidance coping strategies were seen in the interviews. The most prominent coping strategy was task oriented.ConclusionThis interview study with Swedish PWH shows that they strive for normality and adaptation in social activities throughout life finding their own niche. The PWH expressed the importance of knowledge and support from the comprehensive medical team at HTC and therefore it seems important to continue comprehensive medical care at HTC in order to follow-up the haemophilia persons regularly.
Highlights
The most prominent coping strategy was task oriented. This interview study with Swedish Persons with Haemophilia (PWH) shows that they strive for normality and adaptation in social activities throughout life finding their own niche
Haemophilia is an X linked congenital disorder which is caused by deficiency in the coagulation factor VIII or coagulation factor IX[1]
Previous interview studies reported improved quality of life for adults with haemophilia due to the benefits of factor replacement therapy as compared to the time before factor replacement was readily available[7], that the bleeding disorder had an impact on education, work, social activities and family life of affected individuals [8], and that the disorder was always present in their life and the home treatment influenced everyday life [9]
Summary
Haemophilia is an X linked congenital disorder which is caused by deficiency in the coagulation factor VIII (haemophilia A) or coagulation factor IX (haemophilia B)[1]. Previous interview studies reported improved quality of life for adults with haemophilia due to the benefits of factor replacement therapy as compared to the time before factor replacement was readily available[7], that the bleeding disorder had an impact on education, work, social activities and family life of affected individuals [8], and that the disorder was always present in their life and the home treatment influenced everyday life [9]. These results were confirmed by a study of the patients perspective for understanding the impact of haemophilia symptoms and treatments on their Health Related Quality of Life [10]. To get a more profound understanding of how Persons with Haemophilia (PWH) experience their life situation and how they cope with their disability seems to be important knowledge for health professionals and others involved
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