Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study

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.

Living with a rare disorder: a systematic review of the qualitative literature

“…Several patients described gratefulness associated with living in a country with available treatment options (Brodin et al. ; Limperg et al. ; von der Lippe et al.…”

“…), struggle and fight against the disorder, and rise after crises (Brodin et al. ; von der Lippe et al. ), try as far as possible to live a normal life (Smith et al.…”

“…), develop better self‐management skills regarding the disease and its treatment (Brodin et al. ; Palareti et al. ), and chose suitable education and work (Brodin et al.…”

“…), and chose suitable education and work (Brodin et al. ). People with medical conditions who experienced positive treatment effects, defined themselves as lucky and grateful, and described how this had helped them put their life outcome in perspective (Diesen ).…”

“…Other coping strategies were that patients compared themselves with other people they perceived had more serious conditions (Petersen ), or involved themselves in influencing political decisions (Brodin et al. ).…”