Perceptions of being grandparents of children living with type 1 diabetes in Sweden: a qualitative interview study

This study aimed to describe the perceptions of being grandparents of a grandchild living with type 1 diabetes.

When a child develops a lifelong condition, it affects the whole family, and caring for a child with chronic illness can be stressful. This ongoing stress can impact family relationships. In addition to parents, siblings and grandparents are often among the first to learn about the child's condition and may be the initial source of support.

Individual interviews were conducted with 11 grandparents from northern Sweden who met the inclusion criteria of having a grandchild with type 1 diabetes. The data were analyzed using qualitative content analysis.

The analysis of the interviews uncovered one main theme: being the lighthouse that lights up dark paths but still needing attention to keep shining. Two themes emerged: facing and managing the unknown and balancing expectations and personal needs. Each theme included three subthemes: understanding an emotionally overwhelming situation, taking on new responsibilities and pushing boundaries, and using but not fully trusting self-management technologies. Other aspects included handling a growing pile of concerns, trying to keep the family united, and maintaining personal activities.

Grandparents play an essential role in families with children who have type 1 diabetes. They assume significant responsibilities by learning self-management technologies and providing emotional and practical support, which are vital for family stability and the child's well-being. However, this role presents challenges, such as fears of making mistakes in diabetes management and worries about their child's and grandchild's struggles. Despite these challenges, many grandparents show resilience and are eager to support their families. They remain actively involved, primarily relying on informal support and information from their children, partners, or patient organizations.