Adherence decision making in the everyday lives of emerging adults with type 1 diabetes

Purpose The purpose of this study was to explore motivations underlying nonadherent treatment decisions made by young adults with type 1 diabetes. Methods Eight emerging adults each completed a series of semi-structured interviews concerning their approaches to diabetes care, relationships with clinicians, and everyday activities and routines. A narrative thematic analysis was used to develop initial themes and refine them through continued data collection and review of the research literature. Results Five themes were identified as motivating nonadherence: (1) efforts to mislead health care providers, (2) adherence to alternative standards, (3) treatment fatigue and burnout, (4) social support problems, and (5) emotional and self-efficacy problems. Conclusion Instances of nonadherence generally involved a combination of the five identified themes. Participants reporting nonadherence also described difficulties communicating with care providers regarding their treatment. Nonjudgmental communication between providers and emerging adults may be particularly important in promoting positive health outcomes in this population.

[1]  B. Anderson,et al.  A developmental perspective on the challenges of diabetes education and care during the young adult period. , 2004, Patient education and counseling.

[2]  L Nyström,et al.  Increased mortality in diabetes during the first 10 years of the disease. A population-based study (DISS) in Swedish adults 15-34 years old at diagnosis. , 2001, Journal of internal medicine.

[3]  E. Vermeire,et al.  Patient adherence to treatment: three decades of research. A comprehensive review , 2001, Journal of clinical pharmacy and therapeutics.

[4]  Jennifer Y. Liu,et al.  Alcohol consumption is inversely associated with adherence to diabetes self‐care behaviours , 2006, Diabetic medicine : a journal of the British Diabetic Association.

[5]  Robert M. Anderson,et al.  Compliance and Adherence are Dysfunctional Concepts in Diabetes Care , 2000, The Diabetes educator.

[6]  B. Yeap,et al.  Prevalence and associations of psychological distress in young adults with Type 1 diabetes , 2008, Diabetic medicine : a journal of the British Diabetic Association.

[7]  Urmimala Sarkar,et al.  Is self-efficacy associated with diabetes self-management across race/ethnicity and health literacy? , 2006, Diabetes care.

[8]  D. Dunger,et al.  Poor prognosis of young adults with type 1 diabetes: a longitudinal study. , 2003, Diabetes care.

[9]  M. Fisher,et al.  Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications (DCCT/EDIC) , 2007 .

[10]  Brian T. Austin,et al.  Organizing care for patients with chronic illness. , 1996, The Milbank quarterly.

[11]  B. Zinman,et al.  Modern-day clinical course of type 1 diabetes mellitus after 30 years' duration: the diabetes control and complications trial/epidemiology of diabetes interventions and complications and Pittsburgh epidemiology of diabetes complications experience (1983-2005). , 2009, Archives of internal medicine.

[12]  N. Arar,et al.  An analytical framework for contrasting patient and provider views of the process of chronic disease management. , 2001, Medical anthropology quarterly.

[13]  S. Genuth,et al.  The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. , 1993, The New England journal of medicine.

[14]  V. Basevi,et al.  Standards of Medical Care in Diabetes—2012 , 2011, Diabetes Care.

[15]  J. Dale,et al.  Obstacles to adherence in living with type-2 diabetes: an international qualitative study using meta-ethnography (EUROBSTACLE). , 2007, Primary care diabetes.

[16]  Joshua Borus,et al.  Adherence challenges in the management of type 1 diabetes in adolescents: prevention and intervention , 2010, Current opinion in pediatrics.

[17]  G. Rowles,et al.  Patient-provider communication: understanding diabetes management among adult females. , 2009, Patient education and counseling.

[18]  Helena J Kondryn,et al.  Treatment non-adherence in teenage and young adult patients with cancer. , 2011, The Lancet. Oncology.

[19]  Korey K Hood,et al.  Association Between Adherence and Glycemic Control in Pediatric Type 1 Diabetes: A Meta-analysis , 2009, Pediatrics.

[20]  Y. Jang,et al.  Standards of Medical Care in Diabetes-2010 by the American Diabetes Association: Prevention and Management of Cardiovascular Disease , 2010 .

[21]  J. Arnett Emerging adulthood. A theory of development from the late teens through the twenties. , 2000, The American psychologist.

[22]  Norman Fleischer,et al.  The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. The Diabetes Control and Complications Trial Research Group. , 1993 .

[23]  D. Drotar,et al.  Executive Functioning, Treatment Adherence, and Glycemic Control in Children With Type 1 Diabetes , 2010, Diabetes Care.

[24]  W. Katon,et al.  Diabetes and Poor Disease Control: Is Comorbid Depression Associated With Poor Medication Adherence or Lack of Treatment Intensification? , 2009, Psychosomatic medicine.

[25]  M Peyrot,et al.  The Impact of Barriers and Self-Efficacy on Self-Care Behaviors in Type 2 Diabetes , 2001, The Diabetes educator.

[26]  C. Asche,et al.  A review of diabetes treatment adherence and the association with clinical and economic outcomes. , 2011, Clinical therapeutics.

[27]  Robert M. Anderson,et al.  Contrasting Patient and Practitioner Perspectives in Type 2 Diabetes Management , 1998, Western journal of nursing research.

[28]  M. Grey,et al.  Stressors and self-care challenges faced by adolescents living with type 1 diabetes. , 2004, Applied nursing research : ANR.

[29]  M. S. Kirkman,et al.  Comment on: American Diabetes Association. Standards of Medical Care in Diabetes—2011. Diabetes Care 2011;34(Suppl. 1):S11–S61 , 2011 .

[30]  M. Graça Pereira,et al.  Impact of family environment and support on adherence, metabolic control, and quality of life in adolescents with diabetes , 2008, International journal of behavioral medicine.

[31]  S. Greene,et al.  Adherence to insulin treatment, glycaemic control, and ketoacidosis in insulin-dependent diabetes mellitus , 1997, The Lancet.

[32]  M. Dimatteo Variations in Patients’ Adherence to Medical Recommendations: A Quantitative Review of 50 Years of Research , 2004, Medical care.

[33]  A. Peters,et al.  Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems , 2011, Diabetes Care.

[34]  A. La Greca,et al.  Adherence and glycemic control among Hispanic youth with type 1 diabetes: role of family involvement and acculturation. , 2010, Journal of pediatric psychology.

[35]  L. Patterson Narrative Methods for the Human Sciences , 2008 .

[36]  D. Rao,et al.  Stigma and social barriers to medication adherence with urban youth living with HIV , 2007, AIDS care.

[37]  K. Berlin,et al.  Attributions of adolescents with type 1 diabetes in social situations: relationship with expected adherence, diabetes stress, and metabolic control. , 2006, Diabetes care.

[38]  E. Vermeire,et al.  GPs' perspectives of type 2 diabetes patients' adherence to treatment: A qualitative analysis of barriers and solutions , 2005, BMC family practice.

[39]  L. Manderson,et al.  Control and adherence: living with diabetes in Bangkok, Thailand. , 2006, Social science & medicine.

[40]  H. Bilo,et al.  Perspectives of patients with type 1 or insulin-treated type 2 diabetes on self-monitoring of blood glucose: a qualitative study , 2012, BMC Public Health.

[41]  B. Frier,et al.  Hypoglycemia Unawareness Is Associated With Reduced Adherence to Therapeutic Decisions in Patients With Type 1 Diabetes: Evidence from a Clinical Audit , 2010, Diabetes Care.

[42]  Robert M. Anderson,et al.  Patient empowerment: myths and misconceptions. , 2010, Patient education and counseling.

[43]  S. Ferzacca "Actually, I don't feel that bad": managing diabetes and the clinical encounter. , 2000, Medical anthropology quarterly.

[44]  Tim Wysocki,et al.  Social support and diabetes management in childhood and adolescence: Influence of parents and friends , 2006, Current diabetes reports.

[45]  E. Vermeire,et al.  The adherence of type 2 diabetes patients to their therapeutic regimens: a qualitative study from the patient's perspective , 2003 .

[46]  D. Dunger,et al.  Clinical and psychological course of diabetes from adolescence to young adulthood: a longitudinal cohort study. , 2001, Diabetes care.