'Giving a voice to the voiceless' : the lived experience of health-related quality of life in Bangladeshi patients with ankylosing spondylitis

Abstract

Background This study aimed to explore the lived experience of health-related quality of life in ankylosing spondylitis (AS) among Bangladeshi patients who live in a deprived area of London. Ankylosing spondylitis is a complex systemic rheumatologic condition which is often characterised by severe disability and impaired health-related quality of life. Ankylosing spondylitis in Bangladeshi patients is under-researched, compared to the abundance of studies on health-related quality of life in other communities. Methodology In order to understand and interpret the essence of meaning behind the lived experience of twenty (20) Bangladeshi patients with ankylosing spondylitis, an interpretive phenomenological approach was used. More specifically, Max van Manen’s (1990) methodological framework guided and provided a structure to the enquiry into the life world of the Bangladeshi participants. The research was designed to answer the question: what is the lived experience of health-related quality of life in Bangladeshi patients with ankylosing spondylitis? In order to encourage the Bangladeshi patients to share their narratives and uncover meanings attached to their experiences, semi-structured individual face-to-face interviews were used to collect the data. An interpreter was used to aid translation and interpretation in the interviews with the non-English speaking participants. Data were analysed using van Manen’s three method approach of isolating thematic statements. Findings A phenomenological interpretation is offered through five identified global themes and twenty- three sub-themes, which are inextricably linked: the struggle to get a diagnosis, the nature of ankylosing spondylitis, the impact of ankylosing spondylitis, managing with ankylosing spondylitis and finding relief. Interpretation demonstrated the complex and often variable ways in which the Bangladeshi participants have experienced and are living with ankylosing spondylitis. Participants have faced a myriad of struggles in their journey to diagnosis and the ankylosing spondylitis symptoms are unpredictable and uncertain affecting every aspect of their lives. The participants narrated ways they are using to manage the illness and how they have found relief from the symptoms. Conclusion Ankylosing spondylitis affects the Bangladeshi participants in a significant way. Based on their cultural identity, this group hold onto specific health beliefs which they use to construct meaning about their lived experience of ankylosing spondylitis. There is a need to develop culturally appropriate models of service provision for this group, which are based on an understanding of the lived experience.