title: Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study.
abstract: OBJECTIVE
  Haemophilia 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.
  
  
  METHODS
  The 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.
  
  
  CONCLUSIONS
  This 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.
authors.affiliation: Institute of Neuroscience and Physiology- Rehabilitation Medicine, Section for Clinical Neuroscience and Rehabilitation, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Brodin
authors.affiliation: Institute of Neuroscience and Physiology- Rehabilitation Medicine, Section for Clinical Neuroscience and Rehabilitation, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Sunnaas Hospital, Oslo University, Oslo, Norway.
authors.forename: Katharina S
authors.initials: KS
authors.lastname: Sunnerhagen
authors.affiliation: Department of Medicine/Hematology and Coagulation, Coagulation Centre, Sahlgrenska University Hospital, Gothenburg, Sweden.
authors.forename: Fariba
authors.initials: F
authors.lastname: Baghaei
authors.affiliation: Institute of Neuroscience and Physiology- Rehabilitation Medicine, Section for Clinical Neuroscience and Rehabilitation, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Social Work, University of Gothenburg, Gothenburg, Sweden.
authors.forename: Marie
authors.initials: M
authors.lastname: Törnbom
mesh_terms: D000223:Adaptation, Psychological / Q000502:physiology; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005169:Factor VIII / Q000378:metabolism; D006467:Hemophilia A / Q000378:metabolism / Q000473:pathology* / Q000628:therapy*; D006801:Humans; D019369:Life; D008297:Male; D008875:Middle Aged; D010549:Personal Satisfaction; D013548:Sweden; D055815:Young Adult
chemical_list: D005169:Factor VIII