Musculoskeletal dysfunction is a common feature of haemophilia and along with other manifestations of this condition, there is a general perception that health-related quality of life (QoL) will be affected. Previous research using standardized questionnaires has demonstrated that QoL is lower in haemophilia groups compared with normal populations. However, disability studies and interviews with disabled people suggest that many disabled people experience positive life changes as a result of their illness and an affirmative model of disability has been proposed. A qualitative study involving focus groups and interviews was undertaken to explore these issues in a group of 19 severely affected adults with haemophilia. The focus groups and interviews were tape recorded and fully transcribed and the results subjected to thematic analysis. This paper focuses specifically on key issues that impacted on perceptions of QoL. The findings suggest that the participants' perceptions of their QoL were very positive. Possible reasons for this are proposed including the benefits of factor replacement, participants' recollections of their lifestyle before factor replacement, that having haemophilia was integral to the 'self' and finding a niche where they could be successful. A more positive affirmation of haemophilia may need to be considered when developing QoL measures.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.