The clock is ticking: Parental stress around emerging adulthood for adolescents with type 1 diabetes

      Highlights

      • Parents of adolescents with type 1 diabetes reported significant stress.
      • The balance of involvement and allowing autonomy is difficult.
      • Parents continued to support their child in extensive ways.
      • More attention and direction for parents from the provider team could be beneficial.

      Abstract

      Purpose

      Our goal was to explore parental views on the challenges and stressors of transition to young adulthood for adolescents with type 1 diabetes and to describe specific strategies used to reduce parents' own stress during this time.

      Design and methods

      Focus groups with 39 parents of adolescents with type 1 diabetes were conducted in the greater Seattle area. Semi-structured prompts addressed adolescents' self-care tasks, parental assistance with care, challenges and barriers with self-care tasks, and stress/pressure around self-care. Data was analyzed using qualitative methods for emerging themes.

      Results

      Parental stress was heightened when adolescents were approaching common developmental milestones such as driving, moving out, and engaging in risky behaviors that could be exacerbated by poor diabetes management. Thus, most parents reported providing assistance even late into adolescence. Parents shared strategies for guiding adolescents' transition from assisted to independent care with an emphasis on active behaviors parents could continue, thereby lowering their own stress.

      Conclusions

      Parents of adolescents with type 1 diabetes experienced significant stress around their children's transition to independent diabetes self-care management.

      Practice implications

      As part of overall preparation for transition, care providers should be encouraged to communicate with parents about these common stressors and promising avenues for nurturing a teen's independence.

      Keywords

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      References

        • Adler K.
        • Salanterä S.
        • Zumstein-Shaha M.
        Focus group interviews in child, youth, and parent research: An integrative literature review.
        International Journal of Qualitative Methods. 2019; 18: 1-15
        • Agarwal S.
        • Raymond J.K.
        • Schutta M.H.
        • Cardillo S.
        • Miller V.A.
        • Long J.A.
        An adult health care-based pediatric to adult transition program for emerging adults with type 1 diabetes.
        The Diabetes Educator. 2017; 43: 87-96
        • Ahmed S.P.
        • Bittencourt-Hewitt A.
        • Sebastian C.L.
        Neurocognitive bases of emotion regulation development in adolescence.
        Developmental Cognitive Neuroscience. 2015; 15: 11-25
        • Almigbal T.H.
        • Alfaifi A.A.
        • Aleid M.A.
        • Billah B.
        • Alramadan M.J.
        • Sheshah E.
        • Batais M.A.
        Safe driving practices and factors associated with motor-vehicle collisions among people with insulin-treated diabetes mellitus: Results from the Diabetes and Driving (DAD) study.
        Journal of Safety Research. 2018; 65: 83-88
        • Bazeley P.
        Qualitative data analysis: Practical strategies: Sage.
        2013
        • Beresford B.
        • Stuttard L.
        Young adults as users of adult healthcare: Experiences of young adults with complex or life-limiting conditions.
        Clinical Medicine. 2014; 14: 404-408
        • Blevins C.E.
        • Anderson B.J.
        • Caviness C.M.
        • Herman D.S.
        • Stein M.D.
        Emerging adults’ discussion of substance use and sexual behavior with providers.
        Journal of Health Communication. 2019; 24: 121-128
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qualitative Research in Psychology. 2006; 3: 77-101
        • Calkins S.D.
        Psychobiological models of adolescent risk: Implications for prevention and intervention.
        Developmental Psychobiology. 2010; 52: 213-215
        • Cameron F.J.
        • Skinner T.C.
        • de Beaufort C.E.
        • Hoey H.
        • Swift P.G.
        • Aanstoot H.
        • et al.
        Are family factors universally related to metabolic outcomes in adolescents with type 1 diabetes?.
        Diabetic Medicine. 2008; 25: 463-468
        • Campbell M.S.
        • Wang J.
        • Cheng Y.
        • Cogen F.R.
        • Streisand R.
        • Monaghan M.
        Diabetes-specific family conflict and responsibility among emerging adults with type 1 diabetes.
        Journal of Family Psychology. 2019; 33: 788-796
        • Corathers S.D.
        • Yi-Frazier J.P.
        • Kichler J.C.
        • Gilliam L.K.
        • Watts G.
        • Houchen A.
        • Beal S.
        Development and implementation of the readiness assessment of emerging adults with type 1 diabetes diagnosed in youth (READDY) tool.
        Diabetes Spectrum, 2019 (May)
        • Cousino M.K.
        • Hazen R.A.
        Parenting stress among caregivers of children with chronic illness: A systematic review.
        Journal of Pediatric Psychology. 2013; 38: 809-828
        • Diabetes Control and Complications Trial Research Group
        Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: Diabetes control and complications trial.
        The Journal of Pediatrics. 1994; 125: 177-188
        • Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications Research Group
        Retinopathy and nephropathy in patients with type 1 diabetes four years after a trial of intensive therapy.
        New England Journal of Medicine. 2000; 342: 381-389
        • Ellis B.J.
        • Del Giudice M.
        • Dishion T.J.
        • Figueredo A.J.
        • Gray P.
        • Griskevicius V.
        • Wilson D.S.
        The evolutionary basis of risky adolescent behavior: Implications for science, policy, and practice.
        Developmental Psychology. 2012; 48: 598-623
        • Ersig A.L.
        • Tsalikian E.
        • Coffey J.
        • Williams J.K.
        Stressors in teens with type 1 diabetes and their parents: Immediate and Long-term implications for transition to self-management.
        Journal of Pediatric Nursing. 2016; 31: 390-396
        • Farrell K.
        • Fernandez R.
        • Salamonson Y.
        • Griffiths R.
        • Holmes-Walker D.J.
        Health outcomes for youth with type 1 diabetes at 18 months and 30 months post transition from pediatric to adult care.
        Diabetes Research and Clinical Practice. 2018; 139: 163-169
        • Finset A.
        Qualitative methods in communication and patient education research [editorial].
        Patient Education and Counseling. 2008; 73: 1-2
        • Foster N.C.
        • Beck R.W.
        • Miller K.M.
        • et al.
        State of type 1 diabetes management and outcomes from the T1D exchange in 2016-2018.
        Diabetes Technology & Therapeutics. 2019; 21: 66-72
        • Garvey K.C.
        • Foster N.C.
        • Agarwal S.
        • DiMeglio L.A.
        • Anderson B.J.
        • Corathers S.D.
        • et al.
        Health care transition preparation and experiences in a U.S. National Sample of Young adults with type 1 diabetes.
        Diabetes Care. 2017; 40: 317-324
        • Goethals E.R.
        • Jaser S.S.
        • Verhaak C.
        • Prikken S.
        • Casteels K.
        • Luyckx K.
        • Delamater A.M.
        Communication matters: The role of autonomy-supportive communication by health care providers and parents in adolescents with type 1 diabetes.
        Diabetes Research and Clinical Practice. 2020; 163 (Epub 2020 Apr 20. PMID: 32325107)108153https://doi.org/10.1016/j.diabres.2020.108153
        • Got Transition's Six Core Elements of Health Care Transition
        (Available at)
        • Haugstvedt A.
        • Wentzel-Larsen T.
        • Rokne B.
        • Graue M.
        Perceived family burden and emotional distress: Similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study.
        Pediatric Diabetes. 2011; 12: 107-114
        • Hennink M.
        • Hutter I.
        • Bailey A.
        Qualitative research methods: Sage.
        2010
        • Hennink M.M.
        • Kaiser B.N.
        • Marconi V.C.
        Code saturation versus meaning saturation: How many interviews are enough?.
        Qualitative Health Research. 2017; 27: 591-608
        • Hilliard M.E.
        • Perlus J.G.
        • Clark L.M.
        • Haynie D.L.
        • Plotnick L.P.
        • Guttmann-Bauman I.
        • et al.
        Perspectives from before and after the pediatric to adult care transition: A mixed-methods study in type 1 diabetes.
        Diabetes Care. 2014; 37: 346-354
        • Ingerski L.M.
        • Anderson B.J.
        • Dolan L.M.
        • Hood K.K.
        Blood glucose monitoring and glycemic control in adolescence: Contribution of diabetes-specific responsibility and family conflict.
        The Journal of Adolescent Health. 2010; 47: 191-197
        • Iyengar J.
        • Thomas I.H.
        • Soleimanpour S.A.
        Transition from pediatric to adult care in emerging adults with type 1 diabetes: A blueprint for effective receivership.
        Clin Diabetes Endocrinol. 2019; 5 (PMID: 30891310; PMCID: PMC6404300)3https://doi.org/10.1186/s40842-019-0078-7
        • Jaser S.S.
        Psychological problems in adolescents with diabetes.
        Adolescent Medicine: State of the Art Reviews. 2010; 21: 138-151
        • King P.S.
        • Berg C.A.
        • Butner J.
        • Butler J.M.
        • Wiebe D.J.
        Longitudinal trajectories of parental involvement in type 1 diabetes and adolescents’ adherence.
        Health Psychology. 2014; 33: 424-432
        • Lyons S.K.
        • Libman I.M.
        • Sperling M.A.
        Clinical review: Diabetes in the adolescent: Transitional issues.
        The Journal of Clinical Endocrinology and Metabolism. 2013; 98: 4639-4645
        • Majumder E.
        • Cogen F.R.
        • Monaghan M.
        Self-management strategies in emerging adults with Type 1 Diabetes.
        Journal of Pediatric Health Care. 2017; 31: 29-36
        • May D.K.K.
        • Ellis D.A.
        • Cano A.
        • Dekelbab B.
        Improving diabetes-related parent-adolescent communication with individualized feedback.
        Journal of Pediatric Psychology. 2017; 42: 1114-1122
        • McCarthy M.M.
        • Grey M.
        Type 1 diabetes self-management from emerging adulthood through older adulthood.
        Diabetes Care. 2018; 41: 1608-1614
        • Miller K.M.
        • Foster N.C.
        • Beck R.W.
        • Bergenstal R.M.
        • DuBose S.N.
        • DiMeglio L.A.
        • T1D Exchange Clinic Network
        Current state of type 1 diabetes treatment in the US: Updated data from the T1D exchange clinic registry.
        Diabetes Care. 2015; 38: 971-978
        • Monaghan M.
        • Baumann K.
        Type 1 diabetes: Addressing the transition from pediatric to adult-oriented health care.
        Research and Reports in Endocrine Disorders. 2016; 6: 31-40
        • Nansel T.R.
        • Anderson B.J.
        • Laffel L.M.
        • Simons-Morton B.G.
        • Weissberg-Benchell J.W.
        • Wysocki T.
        • Lochrie A.S.
        A multisite trial of clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: Feasibility and design.
        Pediatric Diabetes. 2009; 10: 105-115
        • O’Brien B.C.
        • Harris I.B.
        • Beckman T.J.
        • Reed D.A.
        • Cook D.A.
        Standards for reporting qualitative research: A synthesis of recommendations.
        Academic Medicine. 2014; 89: 1245-1251
        • Park M.J.
        • Scott J.T.
        • Adams S.H.
        Adolescent and young adult health in the United States in the past decade: Little improvement and young adults remain worse off than adolescents.
        The Journal of Adolescent Health. 2014; 55: 3-16
        • Patel N.J.
        • Datye K.A.
        • Jaser S.S.
        Importance of patient-provider communication to adherence in adolescents with type 1 diabetes.
        Healthcare. 2018; 28 (Article ID: E30)
        • Peters A.
        • Laffel L.
        • American Diabetes Association Transitions Working Group
        Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society).
        Diabetes Care. 2011; 34: 2477-2485
        • Pierce J.S.
        • Aroian K.
        • Schifano E.
        • Milkes A.
        • Schwindt T.
        • Gannon A.
        • Wysocki T.
        Health care transition for Young adults with type 1 diabetes: Stakeholder engagement for defining optimal outcomes.
        Journal of Pediatric Psychology. 2017; 42: 970-982
        • Pope C.
        • Ziebland S.
        • Mays N.
        Qualitative research in health care: Analysing qualitative data.
        BMJ [British Medical Journal]. 2000; 320: 114
        • Pyatak E.A.
        • Sequeira P.A.
        • Vigen C.L.
        • Weigensberg M.J.
        • Wood J.R.
        • Montoya L.
        • Peters A.L.
        Clinical and psychosocial outcomes of a structured transition program among young adults with type 1 diabetes.
        The Journal of Adolescent Health. 2017; 60: 212-218
        • Roberts A.J.
        • Moss A.
        • Malik F.S.
        • Taplin C.
        • Pihoker C.
        • Hirsch I.B.
        • Yi-Frazier J.P.
        Driving safety in adolescents and young adults with type 1 diabetes.
        Diabetes Spectrum: A Publication of the American Diabetes Association. 2020; 33: 352-357
        • Rumburg T.M.
        • Lord J.H.
        • Savin K.L.
        • Jaser S.S.
        Maternal diabetes distress is linked to maternal depressive symptoms and adolescents’ glycemic control.
        Pediatric Diabetes. 2017; 18: 67-70
        • Sawyer S.M.
        • Drew S.
        • Yeo M.S.
        • Britto M.T.
        Adolescents with a chronic condition: Challenges living, challenges treating.
        Lancet. 2007; 369: 1481-1489
        • Sheehan A.M.
        • While A.E.
        • Coyne I.
        The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: A systematic review.
        Diabetic Medicine. 2015; 32: 440-458
        • Shulman R.
        • Shah B.R.
        • Fu L.
        • Chafe R.
        • Guttmann A.
        Diabetes transition care and adverse events: A population-based cohort study in Ontario, Canada.
        Diabetic Medicine. 2018; 35: 1515-1522
        • Street R.L.
        • Makoul G.
        • Arora N.K.
        • Epstein R.M.
        How does communication heal? Pathways linking clinician-patient communication to health outcomes.
        Patient Education and Counseling. 2009; 74: 295-301
        • Stroud C.
        • Walker L.R.
        • Davis M.
        • Irwin C.E.
        Investing in the health and well-being of young adults.
        J Adolesc Health. 2015; 56: 127-129
        • Sussman S.
        • Arnett J.J.
        Emerging adulthood: Developmental period facilitative of the addictions.
        Evaluation and Health Professionals. 2014; 37: 147-155
        • Van Gampelaere C.
        • Vervoort T.
        • Luyckx K.
        • De Paepe A.
        • Van Aken S.
        • Goubert L.
        Maternal distress in the context of their child’s type 1 diabetes: Exploring the role of adaptive maternal emotion regulation on child outcomes.
        Psychology, Health & Medicine. 2018; 23: 337-346
        • White P.H.
        • Cooley W.C.
        • Transitions Clinical Report Authoring Group, American Academy Of Pediatrics, American Academy Of Family Physicians, & Physicians, A. C. O
        Supporting the health care transition from adolescence to adulthood in the medical home.
        Pediatrics. 2018; 142 (Article ID: e20182587)
        • Whittemore R.
        • Kanner S.
        • Grey M.
        The influence of family on physiological and psychosocial health in youth with type 1 diabetes: A systematic review.
        in: Melnyk B. Fineat-Overholt E. Evidence-Based Practice in Nursing and Healthcare: A Guide to Best Practice (pp. CD22–73-CD22–87). Philadelphia: Lippincott Williams & Wilkins, 2004
        • Williams L.B.
        • Laffel L.M.
        • Hood K.K.
        Diabetes-specific family conflict and psychological distress in paediatric type 1 diabetes.
        Diabetic Medicine. 2009; 26: 908-914
        • Wysocki T.
        • Nansel T.R.
        • Holmbeck G.N.
        • Chen R.
        • Laffel L.
        • Anderson B.J.
        • Steering Committee of the Family Management of Childhood Diabetes Study
        Collaborative involvement of primary and secondary caregivers: Associations with youths’ diabetes outcomes.
        Journal of Pediatric Psychology. 2009; 34: 869-881
        • Yi-Frazier J.P.
        • Fladeboe K.
        • Klein V.
        • Eaton L.
        • Wharton C.
        • McCauley E.
        • Rosenberg A.R.
        Promoting resilience in stress Management for Parents (PRISM-P): An intervention for caregivers of youth with serious illness.
        Families, Systems & Health. 2017; 35: 341-351
        • Young M.T.
        • Lord J.H.
        • Patel N.J.
        • Gruhn M.A.
        • Jaser S.S.
        Good cop, bad cop: Quality of parental involvement in type 1 diabetes management in youth.
        Current Diabetes Reports. 2014; 14: 546