Shared decision making (SDM) is regarded as an ideal in chronic illness care but is difficult to implement in practice. Communication and reflection play an important role and need further investigation. Using grounded theory, we studied patient-provider interaction in a difficult and advanced area: managing poorly controlled diabetes. A person-centered communication and reflection model was developed, identifying SDM in chronic care to be a question of professionals gaining insight into patients' decisions, rather than the opposite. The model reveals important choices in communication and reflection, which were decisive for whether SDM was achieved or not. SDM involved co-creating person-centered knowledge: concrete evidence which empowered patients and professionals in problem solving. Although further testing is required, the general tenets of the model are expected to be applicable across chronic conditions. Findings indicate that SDM in chronic illness care requires innovation in current approaches to decision making and problem solving.

Although health professionals advocate empowerment in patient care, they often fail to realize it in practice. Through grounded theories we previously explained why barriers to empowerment were seldom overcome in diabetes care. Zoffmann used these theories as a basis for developing a decision-making and problem-solving method called guided self-determination (GSD). To realize empowerment, health professionals need detailed knowledge of the barriers, their own roles in these barriers, ways to overcome them, and recognizable evidence of having succeeded. Through theory-driven, qualitative evaluation, the previously developed grounded theories helped us recognize changes consistent with empowerment in dyads of nurses and patients with poorly controlled type 1 diabetes. By completing GSD reflection, patients remarkably improved their ability to identify, express, and share unique and unexpected difficulties related to living with diabetes. As signs of empowerment, patients and health professionals accomplished shared decision making, resolved life–disease conflicts, and established meaningful and effective relationships.

Providing care for adolescents with type 1 diabetes is complex, demanding, and often unsuccessful. Guided self-determination (GSD) is a life skills approach that has been proven effective in caring for adults with type 1 diabetes. To improve care, GSD was revised for adolescents, their parents, and interdisciplinary healthcare providers (HCP) to create GSD-Youth (GSD-Y). We evaluated the impact of GSD-Y after it was integrated into pediatric outpatient visits versus treatment-as-usual, focusing on glycemic control and the development of life skills in adolescents with type 1 diabetes. Seventy-one adolescents (mean age: 15 years, mean duration of diabetes: 5.7 years, mean HbA1c: 77 mmol/mol (9.1%), upon entering the study) from two pediatric departments were randomized into a GSD-Y group (n = 37, GSD-Y was provided during individual outpatient sessions) versus a treatment-as-usual group (n = 34). The primary outcome was the HbA1c measurement. The secondary outcomes were life skills development (assessed by self-reported psychometric scales), self-monitored blood glucose levels, and hypo- and hyperglycemic episodes. The analysis followed an intention-to-treat basis. Fifty-seven adolescents (80%) completed the trial, and 53 (75%) completed a six-month post-treatment follow-up. No significant effect of GSD-Y on the HbA1c could be detected in a mixed-model analysis after adjusting for the baseline HbA1c levels and the identity of the HCP (P = 0.85). GSD-Y significantly reduced the amotivation for diabetes self-management after adjusting for the baseline value (P = 0.001). Compared with the control group, the trial completion was prolonged in the GSD-Y group (P <0.001), requiring more visits (P = 0.05) with a higher rate of non-attendance (P = 0.01). GSD-Y parents participated in fewer of the adolescents’ visits (P = 0.05) compared with control parents. Compared with treatment-as-usual, GSD-Y did not improve HbA1c levels, but it did decrease adolescents’ amotivation for diabetes self-management. http://www.controlled-trials.com/isrctn/search.html?srch=54243636%26sort=3%26dir=desc%26max=10%26Submit=SUBMIT , registered on 10 January 2010. Life skills for adolescents with type 1 diabetes and their parents.