An exploration of health‐related quality of life in adults with haemophilia – a qualitative perspective

Abstract

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.

Perceptions of Men With Moderate to Severe Hemophilia Regarding the Management of Their Chronic Disorder and Utilization of Community-Based Support

“…They confirmed several of the prior research findings outlined in the introduction-specifically, coping with high levels of stress and uncertainty, managing interpersonal relationships, and being confronted with limited employment opportunities (Bailey et al, 2009;Barlow et al, 2007;Beeton et al, 2005;Canclini et al, 2003;Chapman & Williams, 2011;Hemophilia Experiences, Results, and Opportunities, 2012). The men who participated in this study provided a more nuanced understanding of their thought processes and behaviors.…”

Psychosocial aspects of haemophilia: a systematic review of methodologies and findings

“…Further searching of reference lists gave a total of 195 potentially relevant publications. Based on further analysis of these results, 26 publications from 24 studies were identified for inclusion in this review [12–37].…”

Cognitive functioning, personality variables and academic achievement of hemophilic and normal children: A comparative study

“…Indeed there have been some studies that indicate that the persons with Hemophilia have the capacity to turn back and look at their condition in a positive approach and definitely increase their quality-of-life (Beeton et al, 2005). To achieve this end, this preliminary data needs to be increased not only in number, but also in geographical location, community and rural and semi urban sectors.…”