Experiences of emotional support among parents of children and adolescents with type 1 diabetes: a qualitative study.

Abstract

Objective: Parents of youth with type 1 diabetes (T1D) experience substantial disease-specific demands and distress, yet their perceptions about the emotional support they receive related to the challenges of caring for a child with diabetes have not been well described. This research aimed to characterize the types of emotional support parents of youth with T1D receive and how they experience emotional support.

Methods: As part of a larger qualitative study on diabetes health-related quality of life, 23 parents (96% mothers) of youth with T1D (M age = 10.9 ± 3.8 years; 35% female) completed semi-structured interviews about various aspects of parenting a child with T1D, including emotional support they received. Interviews were transcribed verbatim, coded, analyzed using thematic analysis, and interpreted according to the social-ecological model to generate major and minor themes.

Results: Three themes were constructed. The "Individual" theme included parent-specific factors, including their openness to and satisfaction with diabetes-specific emotional support they receive. Reflecting sources of emotional support, the "Interpersonal" theme included parents' central supportive networks (e.g., family, professionals), and the "Community" theme included parents' extended supportive networks (e.g., community members, T1D organizations, other families). Parents valued emotional support that was nonjudgmental and demonstrated knowledge of T1D.

Conclusions: Both individual and environmental factors relate to how parents seek and receive emotional support from various sources. Clinicians should normalize the experience of needing emotional support to make parents feel comfortable sharing their experiences openly and, when appropriate, help link families to resources to meet their emotional support needs.