Mixed-Method Study of the Experiences and Routines of Caregivers of Children with Type 1 Diabetes

Abstract

Background: Type 1 diabetes is one of the most prevalent chronic childhood conditions that affects family roles, routines, and the ability to participate in meaningful occupations after a child's diagnosis. Because of the complex health management routines required to ensure the safety and well-being of a child with type 1 diabetes, caregivers may experience decreased overall health and well-being. Method: This sequential mixed-method study used a cross-sectional survey (n = 37) and phenomenological interviews (n = 6) to explore burden (the Burden Scale for Family Caregivers), quality of life (the WHO Quality of Life-BREF), and role engagement (a questionnaire) for caregivers of children living with type 1 diabetes. Results: The findings suggest that as caregiver burden increased, quality of life decreased (r = -.73, p < 0.05). The caregivers described how caring for their children affected relationship maintenance with spouses, family, and friends; impacted their productive occupations involving work, home responsibilities, self-care, and finances; and revealed a pressing need for education and advocacy. Conclusions: The findings highlight the importance of supporting caregivers in their roles in providing diabetes management care to children with type 1 diabetes. Future research is needed to develop and test novel occupational therapy interventions aimed to simultaneously improve family-centered participation goals that support the medical management of diabetes care and the caregiver's psychosocial well-being.