A typology of coping with Type 1 diabetes in emerging adulthood: associations with demographic, psychological, and clinical parameters

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.

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Parental Involvement and Executive Function in Emerging Adults with Type 1 Diabetes

Journal of Pediatric Psychology ◽

10.1093/jpepsy/jsz025 ◽

2019 ◽

Vol 44 (8) ◽

pp. 970-979 ◽

Cited By ~ 5

Author(s):

Cynthia A Berg ◽

Deborah J Wiebe ◽

Eunjin Lee Tracy ◽

Caitlin S Kelly ◽

Daniel Mello ◽

...

Keyword(s):

Type 1 Diabetes ◽

Executive Function ◽

Parental Involvement ◽

Emerging Adulthood ◽

Emerging Adults ◽

Multilevel Models ◽

Diabetes Management ◽

Mothers And Fathers ◽

Growth Curve Models

Abstract Objective To examine (a) changes in parental involvement across early emerging adulthood, (b) whether yearly fluctuations in parental involvement were associated with adherence and glycated hemoglobin (HbA1c) over time, and (c) whether higher involvement was more beneficial for those with poorer executive function (EF). Methods A total of 228 high school seniors (M age = 17.76) with type 1 diabetes reported on mothers’ and fathers’ acceptance, knowledge of diabetes activities, disclosure to mothers and fathers regarding diabetes, and adherence at four yearly time points. At baseline, participants completed performance-based measures of EF. HbA1c was collected from assay kits. Results Growth curve models revealed significant declines in disclosure to fathers and mothers’ and fathers’ knowledge of diabetes activities; no changes were found in mothers’ or fathers’ acceptance nor disclosure to mothers. Multilevel models indicated significant between-person effects for nearly all aspects of parental involvement with more acceptance, knowledge, and disclosure associated with better HbA1c and adherence. Within-person effects for disclosure to fathers, and mothers’ and fathers’ knowledge indicated that in years when emerging adults perceived higher amounts of these types of involvement (compared with their own average), HbA1c was lower. Within-person effects were found for acceptance to mothers, disclosure to mothers and fathers, and mothers’ diabetes knowledge for adherence. Disclosure to fathers and mothers’ knowledge of diabetes activities were especially beneficial for HbA1c for those with poorer EF performance. Conclusions Parental involvement in diabetes management remains important during the high-risk time of emerging adulthood, especially for those with poorer EF.

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Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood

Journal of Patient Experience ◽

10.1177/2374373519842963 ◽

2019 ◽

Vol 7 (3) ◽

pp. 365-371

Author(s):

Alisa Tomette ◽

J. Neil Henderson ◽

Amanda Hass ◽

Linda D. Carson ◽

Kama King

Keyword(s):

Type 1 Diabetes ◽

Emerging Adulthood ◽

Emerging Adults ◽

Parental Stress ◽

Self Care ◽

Parental Distress ◽

Caregiver Distress ◽

Face To Face ◽

Semistructured Interviews

This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.

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