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Abstract
Objective To explore how adults living with inflammatory bowel disease (IBD) in rural New Zealand manage their condition and engage with healthcare 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 healthcare 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 is 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 with 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.
- inflammatory bowel disease
- organisation of health services
- qualitative research
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Footnotes
Twitter @StokesTim63
Contributors TSt conceived and designed the study with input from LR, SD, TSu, AMcC, CH, FD-N and MS. GN conducted the interviews. Data analysis was undertaken by LR and GN, with input from TSt and the wider research team. LR and TSt led the writing of the manuscript with input from GN. All authors reviewed and critiqued the manuscript and approved the final manuscript.
Funding This study was funded by the Healthcare Otago Charitable Trust.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical approval was obtained from the University of Otago Human Ethics Committee (D18/145). Written informed consent was obtained from all participants.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Full de-identified interview transcripts will not be shared. Informed consent, in line with the approving ethics committee, only allows for the use of de-identified extracts within research reporting and writing, in order to maintain the privacy of participants based in a defined regional area and population, thus making their identification with full transcripts more likely.
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