Family member involvement when multiple family members have type 1 diabetes

TL;DR

This study explores how families cope when multiple members have type 1 diabetes, highlighting both benefits and challenges.

Contribution

The study provides new insights into family dynamics when multiple members have T1D, an area largely overlooked in prior research.

Findings

Having multiple family members with T1D can enhance cohesion and mutual support during diagnosis and management.

Mothers often bear the primary responsibility for managing T1D, which can negatively impact their well-being.

Siblings without T1D may experience frustration and feel neglected when their needs are deprioritized.

Abstract

Family involvement is beneficial for type 1 diabetes (T1D) self‐management; however, few studies have examined family involvement when multiple family members (MFM) have T1D. This qualitative study examined the perceptions and experiences of family members (parents with and without diabetes, children with T1D, siblings without diabetes) where at least 2 members of the immediate family had T1D.

Semi‐structured interviews were conducted with members from five families (N = 21).

Qualitative themes emerged noting the benefits of having MFM with T1D for initial diagnosis and the enhanced cohesion that comes from the support MFM with T1D provide each other. Across families, even when a father had T1D and the mother did not, the mother was described as the key source of support for MFM with T1D. This increased mental load and responsibilities of mothers come with risks to mothers' physical and emotional well‐being. Additionally, there were added family stressors, including enhanced financial burden, glucose levels interfering with family activities, and respecting differences among family members in management strategies. Finally, siblings without T1D noted frustrations and well‐being concerns due to children with T1D being prioritized over them.

The findings add a rich view of family involvement in families where MFM experience T1D, an important contribution to a literature focused nearly exclusively on families where only one person has T1D. Family members with and without T1D are providing substantial support that is largely quite effective. The findings have clear clinical implications, especially regarding the needed support for mothers, for financial support and for siblings without diabetes.