A177 RESILIENCE AND EMPOWERMENT OF INDIGENOUS PERSONS LIVING WITH INFLAMMATORY BOWEL DISEASE: A PHOTOVOICE STUDY FROM CANADA

TL;DR

This study explores the healthcare experiences of Indigenous people in Canada living with inflammatory bowel disease, highlighting barriers and resilience through a photovoice approach.

Contribution

The study provides novel insights into Indigenous perspectives on IBD healthcare access and experiences through participatory photovoice methods.

Findings

Participants experienced delays in diagnosis and symptom-focused care from healthcare providers.

Healthcare system challenges included inadequate provider knowledge and negative interactions.

Advocacy and supportive networks were crucial for navigating healthcare and maintaining dignity.

Abstract

There is limited evidence about inflammatory bowel disease (IBD) among Indigenous peoples (Inuit, Métis, and First Nations [FN]). Healthcare utilization inequities between FN and non-FN individuals with IBD have been documented.

We aimed to explore the perceptions of FN persons living with IBD, including identifying barriers and facilitators to access healthcare and understanding their expectations of healthcare for IBD.

Six FN community members shared their experiences and perspectives about IBD. Four were individuals living with IBD and two were parents of FN persons living with IBD. Participants were asked to make photos in response to: “What is IBD for you?”, “What does it mean to be healthy and unhealthy when living with the diagnosis of IBD?”, “What do you expect when looking for healthcare at a clinic or a hospital?”, and “What are your challenges when accessing care?”. Then, they participated in semi-structured group reflections about their photo selections. Reflexive thematic analysis was utilized to analyze photographs, questionnaires, and reflections.

The analysis revealed five themes: 1. Diagnosing IBD; 2. Living with IBD; 3. The Health-Sickness Dichotomy; 4. Healthcare Enablers and Barriers; and 5. Advocacy. The 1st theme encapsulates participants’ experiences regarding delays in diagnosis, the tendency of healthcare practitioners to focus on symptoms rather than the underlying disease, and the emotional responses to receiving an IBD diagnosis. The 2nd theme traces participants’ experiences as they navigate a changed reality, confront issues of bodily betrayal, dignity, and resilience. The 3rd theme highlights the contrasts between health and illness as experienced through physical symptoms, dietary choices, and social interactions. The 4th theme captures participants’ experiences within the healthcare system, including their expectations, positive encounters, and challenges such as inadequate knowledge among some healthcare providers, negative interactions, finding adequate language and use of metaphors to speak about a stigmatizing illness, and the use of humor as a coping mechanism and a barrier. The 5th theme reflects participants’ experiences advocating for themselves or relying on supportive networks to advocate on their behalf. Participants recognized the value of patients and advocates as experts in navigating their health journeys.

Drawing on participants’ lived experiences, this study highlights the gaps in the healthcare system faced by Indigenous patients living with IBD, while revealing potential solutions to enhance their healthcare experiences and outcomes.

SHRF-SCPOR