Learning about Type 1 diabetes and learning to live with it when diagnosed in adulthood: two distinct but inter-related psychological processes of adaptation A qualitative longitudinal study.

AIM: To explore the experiences of adults with newly diagnosed Type 1 diabetes in order to understand the adaptive processes that occur in the early phase of the condition. METHODS: We conducted longitudinal semi-structured interviews with 30 adults newly diagnosed with Type 1 diabetes (age range 20-67 years; 16 men; median diabetes duration 23.5 months), recruited from hospitals in Denmark and the UK. The data were analysed using a narrative approach. RESULTS: The narratives could be grouped into three thematic areas: the diagnosis; learning about diabetes; and learning to live with diabetes. Diabetes was characterized as a major disruptor to the established and future life plans of participants, causing significant emotional distress. The narratives showed how early experiences triggered the development of ongoing psychological problems (fear of complications or hypoglycaemia) and diabetes distress, and that navigating different social scenarios (relationships and employment) could be challenging, leading to suboptimal self-management behaviours. The narratives also showed that health professionals often did not attend effectively to participants' emotional needs after diagnosis, and that the language used frequently triggered negative feelings, such as fear or a sense of failure. CONCLUSIONS: Many of the common psychosocial problems associated with Type 1 diabetes seem to gestate in the early phase of life with the condition. There appear to be opportunities to enhance the support provided in this phase to minimize these problems.

Potential positive impact of group-based diabetes dialogue meetings on diabetes distress and glucose control in people with type 1 diabetes.

OBJECTIVE: To evaluate the effect of group-based diabetes dialogue meetings (DDMs) on diabetes distress, perceived competence and glycaemic control. METHODS: Patients with type 1 diabetes (T1D) were invited to DDMs with peers and healthcare professionals. The impact of participation was evaluated by change in diabetes distress measured by Problem Areas in Diabetes (PAID), diabetes competence measured by Perceived Competence in Diabetes (PCD), change in HbA1c before and one year after the DDMs. RESULTS: 120 patients with T1D participated in at least one DDM: 75% female, mean age 50 years (range 21-76), mean diabetes duration 23 years (range 0-64); 39% of all participants had a baseline PAID score≥33, indicating high levels of distress. After one year, both PAID (from 30.4±16.6 to 27.4±17.1; n=81, p=0.03), and mean HbA1c (61.6±10.2 to 58.8±9.9; n=120, p<0.0001) had improved significantly. PCD showed no change. Meanwhile, the benefit from participating was rated high with a median of four out of five and the major gain being the possibility to share experiences with peers. CONCLUSION: Group-based DDMs were highly appreciated by participants and associated with significant improvements in diabetes distress and HbA1c. PRACTICE IMPLICATIONS: DDMs target a large group of patients using few staff resources.

Flexible guided self-determination intervention for younger adults with poorly controlled Type 1 diabetes, decreased HbA1c and psychosocial distress in women but not in men: a real-life RCT.

AIM: To report results from an 18-month randomized controlled trial (RCT) testing the effectiveness of a flexible guided self-determination (GSD) intervention on glycaemic control and psychosocial distress in younger adults with poorly controlled Type 1 diabetes. METHODS: Between January 2010 and February 2012, we randomly allocated two hundred 18-35-year-olds [mean age 25.7 (5.1) years, 50% men] with Type 1 diabetes for ≥ 1 year [mean duration 13.7 (6.8) years] and HbA1c  ≥ 64 mmol/mol (8.0%) to either an immediate GSD (intervention; n = 134) or 18-months delayed GSD group (control; n = 66). Group-based or individual GSD sessions were offered, drawing on reflection sheets and advanced professional communication. The primary outcome was HbA1c (measured at baseline and every three months thereafter) and among secondary outcomes was psychosocial distress (self-reported at baseline and after nine and 18 months). Intention-to-treat analyses included linear regression and repeated measurement analyses. RESULTS: A borderline significant decrease in HbA1c in the intervention group compared with the control group ( - 4 vs - 1 mmol/mol or - 0.4% vs - 0.1%; P = 0.073) was driven by a significantly greater reduction in the GSD women ( - 5 vs + 1 mmol/mol or - 0.5% vs + 0.1%; P = 0.017); parallel decreases were observed in the GSD and control men ( - 3 mmol/mol or  - 0.3%; P = 0.955). Significantly greater reduction in the GSD group's psychosocial distress was again driven by differences between the GSD and the control women. The men's improvements were not connected with the intervention. CONCLUSIONS: The flexible GSD intervention benefitted younger adult women by significantly improving glycaemic control and decreasing diabetes related distress. No effect was seen among men.

A cross-sectional study of glycaemic control, complications and psychosocial functioning among 18- to 35-year-old adults with type 1 diabetes.

AIMS: To describe the level of glycaemic control, complications and psychosocial functioning and the relationships between these variables in the under-researched group of younger adults with type 1 diabetes. METHODS: Local electronic health records provided data on age, gender, disease duration, HbA1c and complications for 710 younger adults (18-35 years) with type 1 diabetes. A questionnaire with wide-ranging psychometric scales was used to measure various aspects of psychosocial functioning: the burden of diabetes-related problems, well-being, self-esteem, perceived competence in managing diabetes, perceived autonomy support from health professionals and self-management motivations. Furthermore, patients reported weekly self-monitored blood glucose measurements and insulin administration. Associations between HbA1c , complication and psychosocial indicators were tested using linear and logistic regression models, adjusted stepwise for confounders, including age, gender, diabetes duration, continuous subcutaneous insulin infusion, smoking and BMI. RESULTS: In total, 406 (57%) participants responded. The responders had a mean age of 27.1 (5.1) years, a mean diabetes duration of 13.5 (7.9) years and an HbA1c of 66 mmol/mol (8.2%), with similar values for both genders (P = 0.87). Complications were observed among women more commonly than among men (31.6 vs. 18.8%, P < 0.01), and high distress levels were more prevalent among women compared with men (51.2 vs. 31.9%, P < 0.0001). Except for perceived autonomy support, the psychosocial variables were all associated with HbA1c (P < 0.001). CONCLUSIONS: The high prevalence of poor glycaemic control, early complications and psychosocial distress require health-promoting interventions tailored to the interrelated clinical and psychosocial needs of younger adults with type 1 diabetes.

Can sharing experiences in groups reduce the burden of living with diabetes, regardless of glycaemic control?

AIMS: To test whether patients with Type 1 diabetes would join support groups and benefit by improving psychosocial functioning, regardless of their HbA1c levels. METHODS: A pre-post test with follow-up after 6 and 12 months was conducted as a concurrent mixed-method study. The convenience sample included patients with Type 1 diabetes aged ≥21 years, having been diagnosed ≥1 year earlier. Primary outcome was diabetes-related distress (using the Problem Areas in Diabetes scale). Secondary outcomes were psychological distress and depressive symptoms (Symptom Check List -90-R/Global Severity Index and depression subscale), well-being (World Health Organization 5) and HbA1c . RESULTS: Equal numbers of patients with HbA1c above and below 64 mmol/mol (8%) joined the support groups (n = 54). Focus group interviews revealed that major benefits were feeling less alone and being intuitively understood among peers. The patients perceived the support groups as a safe environment for sharing experiences. Problem Areas in Diabetes, Global Severity Index and depression subscale scores were significantly reduced post-intervention and maintained at 1-year follow-up. Well-being increased insignificantly. HbA1c was unchanged. CONCLUSIONS: Support groups are able to reduce diabetes-related and psychological distress 1 year after the intervention for patients with both good and poor glycaemic control displaying high levels of distress. Although patients with severely high levels of diabetes-related distress might need more extensive therapeutic interventions to further reduce their level of distress. Further, interventions that target specific self-management problems are needed for patients with poor glycaemic control to help them accomplish lower levels of HbA1c. Moreover, healthcare providers must be aware that patients with good glycaemic control might have an unacknowledged psychosocial burden of living with the illness.