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.

Toward a better understanding of transition from paediatric to adult care in type 1 diabetes: A qualitative study of adolescents

“…27 Other studies highlighted the discomfort of parents in 'stepping back' and the lack of support they themselves felt from the medical system as their children aged. 5,28 Although our adolescent participants emphasized the desire to gradually take over diabetes management from their parents as they grew older, they also identified that the ideal relationship with their parents was one of support and teamwork rather than complete separation, as is consistent with other research. 3 Our findings highlight the complexity of the changing adolescent-parent relationship and the importance of providing guidance not just to adolescents but also to their parents, on how to adopt mutually supportive roles during the transition process.…”

“…One study showed parents' reluctance for their adolescents to have clinic visits alone with their paediatric endocrinologists, fearing loss of information and ability to provide support 27 . Other studies highlighted the discomfort of parents in ‘stepping back’ and the lack of support they themselves felt from the medical system as their children aged 5,28 . Although our adolescent participants emphasized the desire to gradually take over diabetes management from their parents as they grew older, they also identified that the ideal relationship with their parents was one of support and teamwork rather than complete separation, as is consistent with other research 3 .…”

Sustained Improvement in Glycemic Control in Emerging Adults with Type 1 Diabetes 2 Years After the Start of the COVID-19 Pandemic

“…The strengths of the study include the prolonged duration of follow-up, the focus on the provision of care to emerging adults with type 1 diabetes during the pandemic, and the previous characterization of this clinic population [ 19 , 20 , 22 ]. Limitations include its retrospective, single-centre nature.…”

Cutting the cord? Parenting emerging adults with chronic pain

“…The impact of parents on emerging adults with health conditions (eg, eating disorders, 42 cancer, 43 drug use, 44 and diabetes 45 ) has been well‐described, especially in the context of nursing research 21 . Most recent research on emerging adulthood has highlighted the impact of parents on health behaviors in Korean university students during the COVID‐19 global pandemic (eg, following lockdown regulations, social distancing, etc) 46 .…”