Lived experiences of self-care among adults with inflammatory bowel disease in Northeastern Ontario

Abstract

Adults with inflammatory bowel disease (IBD) experience debilitating symptoms that impede their ability to engage in daily activities. In Northeastern Ontario, there is limited access to formal specialized resources inhibiting the development of self-care strategies for living cohesively with IBD. An interpretive phenomenological analysis was used to gain an understanding of the lived experience of self-care among adults with IBD in Northeastern Ontario. Semi-structured interviews were conducted with six individuals diagnosed with IBD. Analysis resulted in the identification of two main themes: living with uncertainty and seeking control. The four subthemes included: disease uncertainty, formal care uncertainty, self-directed resourcefulness, and self-developed observational skills. The lived experience of self-care found to be the actions undertaken to live with uncertainty and seek control in the context of inflammatory bowel disease. The findings align with the Theory of Self-care of Chronic Illness, and provide new insights into potential improvements in patient-centered care, the importance of informal resource utilization, and describe how adults living with IBD in Northern communities navigate their illness through self-care.