Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

Abstract

IntroductionWhereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child’s diabetes ‘self’-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes.Research design and methodsSemi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach.ResultsAnalysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent–child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child’s diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a ‘new normal’ for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child’s readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings.ConclusionsAdult healthcare providers should recognize both the ongoing involvement of parents in the ‘self’-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.