Emily Haynes1, Marissa Ley2, Pam Talbot3, Margaret Dunbar3, Elizabeth Cummings4. 1. Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada. Electronic address: elizabeth.cummings@dal.ca. 2. Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada. 3. Diabetes Care Program of Nova Scotia, Nova Scotia Health Authority, Halifax, Nova Scotia, Canada. 4. Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada; Department of Pediatrics, Dalhousie University/IWK Health Centre, Halifax, Nova Scotia, Canada.
Abstract
BACKGROUND: The Nova Scotia Insulin Pump Program (NSIPP) subsidizes the cost of insulin pump therapy for young patients (≤25 years) with type 1 diabetes. The first NSIPP evaluation focused on clinical outcomes rather than quality of life. Existing research on insulin pumps and quality of life is mostly survey based, with limited first-voice experiences. In this qualitative study, we examined patient and parent perspectives on how insulin pumps affect quality of life in the context of a government-funded program. METHODS: In this investigation, we used a phenomenological approach, guided by a conceptual model. In-depth semistructured telephone interviews (median, 37 minutes) were completed with NSIPP enrollees and/or their parents. Saturation was reached after 23 interviews. Verbatim transcripts were coded independently by 2 researchers. Coding discrepancies were discussed and resolved using concept mapping to clarify relationships between codes and to identify main themes. RESULTS: There were 2 main themes: 1) NSIPP financial support was necessary for those without private insurance and 2) control over life and diabetes with subthemes of social experiences and worry. Participants expressed this theme differently depending on their stage of life. For example, some children experienced shame and even hid their pump, whereas teens were more self-confident with the discreetness of pumps and young adults wore their pump with pride. CONCLUSIONS: Insulin pump therapy, subsidized through the NSIPP, led to improved quality of life, which was experienced differently depending on stage of life.
BACKGROUND: The Nova Scotia Insulin Pump Program (NSIPP) subsidizes the cost of insulin pump therapy for young patients (≤25 years) with type 1 diabetes. The first NSIPP evaluation focused on clinical outcomes rather than quality of life. Existing research on insulin pumps and quality of life is mostly survey based, with limited first-voice experiences. In this qualitative study, we examined patient and parent perspectives on how insulin pumps affect quality of life in the context of a government-funded program. METHODS: In this investigation, we used a phenomenological approach, guided by a conceptual model. In-depth semistructured telephone interviews (median, 37 minutes) were completed with NSIPP enrollees and/or their parents. Saturation was reached after 23 interviews. Verbatim transcripts were coded independently by 2 researchers. Coding discrepancies were discussed and resolved using concept mapping to clarify relationships between codes and to identify main themes. RESULTS: There were 2 main themes: 1) NSIPP financial support was necessary for those without private insurance and 2) control over life and diabetes with subthemes of social experiences and worry. Participants expressed this theme differently depending on their stage of life. For example, some children experienced shame and even hid their pump, whereas teens were more self-confident with the discreetness of pumps and young adults wore their pump with pride. CONCLUSIONS: Insulin pump therapy, subsidized through the NSIPP, led to improved quality of life, which was experienced differently depending on stage of life.