Patients’ accounts of living with and managing Inflammatory Bowel Disease in rural Southern New Zealand: a qualitative study

Abstract

Objective To explore how adults living with Inflammatory Bowel Disease (IBD) in rural New Zealand manage their condition and engage with health care providers. Design Qualitative exploratory design with semi-structured interviews analysed thematically. Setting and participants Interviews were conducted with 18 people living with IBD in the Otago region of the South Island. Results Five important constructs were identified. 1. Journey to confirming and accepting diagnosis 2. Importance of the relationship with the health care team 3. Support from others 4. Learning how to manage IBD and 5. Care at a distance, experiences of rurality. Pathways to confirming diagnosis involved two contrasting journeys: a long and slow process where diagnosis remained unclear for a prolonged period, and a more acute process where diagnosis typically came as a shock. Central to the acceptance process was acknowledging the chronicity of the condition, which involved feelings of grief but also the fear of judgement and stigma. Building a strong relationship with the specialist was central to medical management, particularly in the initial stage following diagnosis. Support from others was critical, enabling participants to progress through acceptance of the disease and developing confidence in its everyday management. Participants shared different strategies on how to manage IBD, describing a trial and error process of finding what's right at different stages of the condition. Managing IBD rurally involved challenges of access to specialist care, with perceptions of delayed referrals and concerns about disparities in specialist access compared to urban counterparts. Rural living also had financial implications - cost of time and cost of mobilising resources for long travels to the urban centre for treatments. Conclusions Findings from this study provide a rich understanding of the complex health journeys of people living with IBD and the challenges of managing the condition rurally.