Experiences and perspectives of the parents of emerging adults living with type 1 diabetes. Issue 1 (1st October 2020)

• Record Type: Journal Article
• Authors: Pritlove, Cheryl; Markowitz, Benjamin; Mukerji, Geetha; Advani, Andrew; Parsons, Janet A
• Is Part Of: BMJ open diabetes research and care. Volume 8:Issue 1(2020)
• Publication Date: 2020-10-01
• Subjects: type 1 diabetes -- parenting -- young adult -- gender; Diabetes -- Periodicals; 616.462005
• DOI: 10.1136/bmjdrc-2019-001125
• Languages: English
• ISSNs: 2052-4897

Abstract

Abstract : Introduction: Whereas 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 methods: Semi-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. Results: Analysis 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. Conclusions: Adult 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.