BHPR oral abstractsO19. Let's talk about Inflammatory Back Pain: A qualitative study regarding experiences of disclosure in people with Ankylosing Spondylitis/Axial Spondyloarthritis

Abstract

Background: Ankylosing spondylitis/axial spondyloarthritis (AS/Axial SpA) is a chronic inflammatory condition that typically affects younger people and often has a detrimental impact on their ability to work. There is little awareness of the condition among family, friends and employers which makes it difficult for those with AS/Axial SpA to have fulfilled working lives. We aimed to conduct in-depth semi-structured interviews with participants to identify the experiences regarding the disclosure of AS/Axial SpA to employers, colleagues, family and healthcare professionals which also included factors perceived as barriers or facilitators associated with this issue. Method(s): Within this qualitative study, using an interpretive phenomenological paradigm, semi-structured interviews were conducted with ten participants with AS/Axial SpA. The interviews were recorded, transcribed and analysed thematically using a Framework analysis. Ethical approval and informed consent were obtained. Result(s): Analysis led to the following five themes being identified: Coping until diagnosis identifies symptoms that participants struggled to deal with and their personal journeys until being diagnosed that was usually delayed. Opening up about diagnosis describes the different experiences and challenges for participants in disclosing to the different groups. Looking for support provides insights into the different groups of people that participants turn to for support when disclosing their diagnosis and for managing symptoms. Sensing the stigma focuses on the different forms of stigma and the resulting psychosocial impact in their overall lives. Making others aware describes the perceived lack of general awareness about the condition and suggestions from participants on how to address this issue. Conclusion(s): Participants discussed their diagnosis and symptoms to varying levels with employers, family members, friends and healthcare professionals. They decided on the level of disclosure after assessing the risks and potential benefits. They were able to find support from work colleagues and family but this was sometimes riddled with challenges. In addition, the specialist physiotherapy team were able to offer much needed physical and psychological support. Despite disclosing their diagnosis, participants remained fearful of stigmatisation especially at work, resulting in psychological distress, which was amplified by the lack of awareness about the condition. Employers, healthcare professionals and family members should not underestimate the challenges faced by individuals when deciding whether to disclose this hidden disability. Offering support and encouragement to empower individuals with AS/Axial SpA to successfully disclose their diagnosis should they choose to should be taken into account as a routine element of clinical care.