Living with haemophilia and von Willebrand's: a descriptive qualitative study

Abstract

Objective: The aim of this qualitative descriptive study was to describe the experience of living with bleeding disorders and to identify the associated salient issues from the perspectives of people living with haemophilia or von Willebrand's Disease (vWD).

Methods: Nine members of The Haemophilia Society took part in a semi-structured interview. The interviews were tape recorded and transcribed and the results subjected to thematic content analysis.

Results: Participants described the physical aspects of their condition, such as bleeding into joints, the implications of bleeds and development of co-morbid conditions (e.g. arthritis). Many felt that their bleeding disorder had impacted on their education, work, social activities and family life. Anxiety and depression were associated with daily management of symptoms, the unpredictable nature of bleeding disorders and concerns about the future. All participants had encountered a degree of stigmatisation related to their condition and felt that there was a public misconception about bleeding disorders. Many had experienced discrimination in educational and work settings. Some participants expressed a preference for seeking treatment from specialist services.

Conclusion: Living with haemophilia and vWD poses a number of daily and longer-term challenges not only for individuals, but also for their families. Further investigation of ways to support such individuals is warranted.

Practice implications: Greater awareness and understanding of the issues faced by people living with haemophilia and vWD is needed for the general public, employers, and healthcare staff, particularly those working in Accident and Emergency Departments.