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Beyond AIC: An Interpretive Descriptive Qualitative Study of Youth Experiences and Perceptions of Living With Type 2 Diabetes

ABSTRACT

Objective

To generate an in-depth understanding of the perceptions and experiences of individuals with youth-onset type 2 diabetes (T2D) to inform knowledge translation initiatives and clinical care.

Design

Interpretive descriptive qualitative study.

Methods

Individuals were eligible to participate if they received a T2D diagnosis on or before 18 years of age, resided in Manitoba, and were between 10 and 25 years of age at the time of data collection. Twenty-two individuals (13 females, 7 males, 2 prefer not to indicate gender; mean age = 19.3 years) participated in 22 semi-structured interviews (mean length: 29:01 min) remotely using Zoom video conferencing software or by telephone. Data were analysed using inductive thematic analysis.

Results

Four themes were generated: (1) Low public knowledge, misconceptions, and stigma impact youth experiences including those of diagnosis, disclosure, treatment, and supports; (2) shared familial experiences impacts perception of the future; (3) mental and emotional wellness is critically important but requires more attention; and (4) T2D carries unanticipated positive and negative impacts for youth.

Conclusions

Findings illustrate the complex interrelationships between public and personal conceptions of T2D, stigma, and T2D navigation, emphasising the centrality of emotional and mental well-being to participants' T2D experiences and management. This representation of experiences and perceptions of youth onset T2D offers direction for holistic and youth-centred research and care and highlights areas where further mental health and educational resources would be beneficial.

Patient and Public Contribution

The knowledge translation resource being developed from this study involves input from patient and public partners.

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