Partnership in transition: Experiences of adolescents with Type 1 diabetes
DOI:
https://doi.org/10.1080/20573316.2017.1382182Keywords:
Type 1 diabetes, Adolescents, Transition, Partnership, Patient experience, Qualitative methodsAbstract
AimsDebut of Type 1 diabetes (T1DM) is most common in childhood and adolescence. In late adolescence, transfer from pediatric to adult diabetes care is often associated with poor metabolic control. Knowledge is scarce on transition and on the experiences of adolescents concerning partnership in transition. The aim is to explore how adolescents with T1DM experience partnership in the transition.
MethodsTen adolescents with T1DM receiving adult diabetes care at the Department of Endocrinology and Internal Medicine at Aarhus University Hospital participated in semi-structured interviews.
ResultsThree major themes emerged from the analysis: (1) Transition unawareness. (2) A crucial change in relationship. (3) Partnership without shared decision-making.
ConclusionsFindings highlight the importance of a specific relationship with the health care providers and a planned and prepared transition. Unawareness concerning the transition process leads to a non-reflective transition and does not support the development of health literacy and partnership.
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References
Garvey KC, Markowitz JT, Laffel LM. Transition to adult care for youth with type 1 diabetes. Curr Diab Rep. 2012;12:533–41. doi: 10.1007/s11892-012-0311-6
Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53. doi: 10.1136/adc.2010.202473
Ritholz MD, Wolpert H, Beste M, Atakov-Castillo A. Patient-provider relationships across the transition from pediatric to adult diabetes care: a qualitative study. Diabetes Educ. 2014;40:40–7. doi: 10.1177/0145721713513177
Price CS, Corbett S, Lewis-Barned N, Morgan J, Oliver LE, Dovey-Pearce G. Implementing a transition pathway in diabetes: a qualitative study of the experiences and suggestions of young people with diabetes. Child Care Hlth Dev. 2011;37:852–60. doi: 10.1111/j.1365-2214.2011.01241.x
Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. J Adoles Health. 1993;14:570–6. doi: 10.1016/1054-139X(93)90143-D
Garvey KC, Beste M, Luff D, Atakov-Castillo A, Wolpert H, Ritholz M. Experiences of health care transition voiced by young adults with type 1 diabetes: a qualitative study. Adoles Health Med Ther. 2014;5:191–8. doi: 10.2147/AHMT.S67943
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. Diabetes Care. 2011;34:2477–85. doi: 10.2337/dc11-1723
Boisen KA, Teilmann G. Transition – more than a transfer. Ugeskr Laeger. 2011;173:725.
Kipps S, Bahu T, Ong K, Ackland FM, Brown RS, Fox CT, et al. Current methods of transfer of young people with Type 1 diabetes to adult services. Diabet Med. 2002;19:649–54. doi: 10.1046/j.1464-5491.2002.00757.x
Christie D, Viner R. Adolescent development. BMJ. 2005;330:301–4. doi: 10.1136/bmj.330.7486.301
van Dam HA, van der Horst F, van den Borne B, Ryckman R, Crebolder H. Provider–patient interaction in diabetes care: effects on patient self-care and outcomes. Patient Educ Couns. 2003;51:17–28. doi: 10.1016/S0738-3991(02)00122-2
Hilliard ME, Perlus JG, Clark LM, Haynie DL, Plotnick LP, 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;37:346–54. doi: 10.2337/dc13-1346
Roisman GI, Masten AS, Coatsworth JD, Tellegen A. Salient and emerging developmental tasks in the transition to adulthood. Child Dev. 2004;75:123–33. doi: 10.1111/j.1467-8624.2004.00658.x
Riiskjær E. Patienten som partner: en nødvendig idé med ringe plads. Odense: Syddansk Universitetsforlag; 2014.
Pomey MP, Ghadiri DP, Karazivan P, Fernandez N, Clavel N, Bayer A. Patients as partners: a qualitative study of patients’ engagement in their health care. PLoS One. 2015;10:e0122499. doi: 10.1371/journal.pone.0122499
Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. Br Med J. 2007;335:24–7. doi: 10.1136/bmj.39246.581169.80
Deci EL, Ryan RM. Handbook of self-determination research. Rochester(NY): University of Rochester Press; 2002.
Dovey-Pearce G, Hurrell R, May C, Walker C, Doherty Y. Young adults’ (16–25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Community. 2005;13:409–19. doi: 10.1111/j.1365-2524.2005.00577.x
Valenzuela JM, Smith LB, Stafford JM, D'Agostino Jr RB, Lawrence JM, Yi-Fraiser JP, et al. Shared decision-making among caregivers and health care providers of youth with type 1 diabetes. J Clin Psychol Med Settings. 2014;21(3):234–43.
Shortus T, Kemp L, McKenzie S, Harris M. Managing patient involvement: provider perspectives on diabetes decision making. Health Expect. 2013;16:189–98. doi: 10.1111/j.1369-7625.2011.00700.x
Kvale S. Interviews: an introduction to qualitative research interviewing. Thousand Oaks(CA): Sage, 1996.
Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. 2012;40:795–805. doi: 10.1177/1403494812465030
Maxwell JA. Qualitative research design: an interactive approach. Thousand Oaks(CA): Sage; 2013.
World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–4; 2011.
Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM, Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33:309–11. doi: 10.1016/S1054-139X(03)00208-8
Mårtenson EK, Fägerskiöld AM. A review of children's decision-making competence in health care. J Clin Nurs. 2008;17:3131–41. doi: 10.1111/j.1365-2702.2006.01920.x
Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27:1361–7. doi: 10.1007/s11606-012-2077-6
Husted GR, Esbensen BA, Hommel E, Thorsteinsson B, Zoffmann V. Adolescents developing life skills for managing type 1 diabetes: a qualitative, realistic evaluation of a guided self-determination-youth intervention. J Adv Nurs. 2014;70:2634–50. doi: 10.1111/jan.12413
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