Understanding the lived experience of people with ostomies and their health care experiences to inform dietetic practice

Blundell, Lisa (2023) Understanding the lived experience of people with ostomies and their health care experiences to inform dietetic practice. Doctoral (PhD) thesis, Memorial University of Newfoundland.

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Abstract

Individuals undergo an adjustment process after ostomy surgery which includes changes in physical abilities, relationships, body image, diet, and social activities. While researchers encourage health care providers (HCPs) to assist people as they learn to cope with changes, there are few guidelines and no standardized training to help dietitians address the psychosocial concerns of people with ostomies. The purpose of this thesis was to better understand how to offer relevant and effective dietetic counselling for people with ostomies. We designed three studies to explore the lifestyle, nutrition, and food-related concerns of people living with ostomies, the current practices of dietitians who counsel people with ostomies, and dietitians’ interactions within an interdisciplinary health care team. I extracted data from Reddit’s r/ostomy (an online community of people with ostomies) using keyword searches related to food and nutrition, and I conducted 10 semi-structured interviews with people living with ostomies in Newfoundland and Labrador (NL). I also conducted 21 semi-structured interviews with dietitians, nurses, physicians, and ostomy support group leaders who care for and support people with intestinal ostomies in NL. We qualitatively analyzed all data and coded themes using two initial coders and Nvivo software. We found that people with ostomies were concerned about physical, psychosocial, and behavioural changes such as ostomy leakage, and changes in mental health, diet, and the ability to sleep. In addition, people with ostomies learned to manage their appliances and output over time by forming new routines, and many commented on the positive role that peer support played throughout their adaptation. Overall, most HCPs focused on physical health and providing in-hospital care to people with ostomies. Our findings suggest there is a lack of psychosocial support and resources available to people with an ostomy, and variable practices of interdisciplinary care and long-term follow-up. Future research should include a longitudinal study to observe how people with new ostomies receive dietetic counselling and cope with changes over time. Additionally, quality assurance studies should be conducted to better understand potential gaps in health services. Lastly, standardized training should be designed and offered to dietitians to support person-centred dietetic counselling for people with ostomies.

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