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The diabetes distress experience from the perspective of adolescents and their parents
Raman Sangha1, Natalie Grieve2, Kyra Braaten2
1Centre for Chronic Disease Prevention and Management, University of British Columbia, Kelowna, BC, Canada.
Objective:
To explore sources of diabetes distress (DD) and resources for mental health support for adolescents with type 1 diabetes (T1D) and their parents/guardians.
Methods:
We recruited adolescents with T1D and parents of adolescents with T1D using an explanatory sequential mixed methods design. Participants completed measures of DD for adolescents (Problem Areas in Diabetes-Teen, PAID-T) or parents (P-PAID-T), followed by separate focus groups that elicited information on common concerns related to living with T1D, types of mental and emotional support accessed, and additional support sources desired. Data were analyzed using an interpretive description approach and collaborative analysis techniques.
Results:
Six adolescents and five parents participated. All adolescents reported high levels of DD (median (IQR) PAID-T score 71 (59-86), cutoff ≥ 44), while most parents reported low levels of DD (P-PAID-T score 46 (35-66), cutoff ≥ 54). Across all focus groups, five themes were identified: DD can cause burnout and indifference; T1D disrupts activities of daily living; More peer support is desired; Society is unaware of how T1D is managed; and Concern about future financial burden. The parent focus groups also identified: Parental concerns around transfer of management of responsibilities to their children.
Conclusion:
An improved understanding of the key sources of DD and how they compare between adolescents and parents will facilitate the design of more effective mental health support interventions for T1D.
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