Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.

ObjectiveThis qualitative study aimed to explore the experience of transition from pediatric to adult diabetes care reported by posttransition emerging adults with type 1 diabetes (T1D), with a focus on preparation for the actual transfer in care.MethodsTwenty-six T1D emerging adults (mean age 26.2±2.5 years) receiving adult diabetes care at a single center participated in five focus groups stratified by two levels of current glycemic control. A multidisciplinary team coded transcripts and conducted thematic analysis.ResultsFour key themes on the process of transfer to adult care emerged from a thematic analysis: 1) nonpurposeful transition (patients reported a lack of transition preparation by pediatric providers for the transfer to adult diabetes care); 2) vulnerability in the college years (patients conveyed periods of loss to follow-up during college and described health risks and diabetes management challenges specific to the college years that were inadequately addressed by pediatric or adult providers); 3) unexpected differences between pediatric and adult health care systems (patients were surprised by the different feel of adult diabetes care, especially with regards to an increased focus on diabetes complications); and 4) patients’ wish list for improving the transition process (patients recommended enhanced pediatric transition counseling, implementation of adult clinic orientation programs, and peer support for transitioning patients).ConclusionOur findings identify modifiable deficiencies in the T1D transition process and underscore the importance of a planned transition with enhanced preparation by pediatric clinics as well as developmentally tailored patient orientation in the adult clinic setting.

Aims To identify psychosocial factors associated with the use of continuous glucose monitoring by adults with Type 1 diabetes.Methods Twenty adult patients (aged 45 AE 15 years, diabetes duration 25 AE 19 years, 50% female) followed at our site in the multi-centre Juvenile Diabetes Research Foundation continuous glucose monitoring trial were divided into three groups: Glycated haemoglobin (HbA 1c ) Responders who demonstrated an improvement in glycaemic control with continuous glucose monitoring (baseline HbA 1c ‡ 7.0%, HbA 1c reduction greater than or equal to 0.5%), Hypoglycaemia Responders (baseline HbA 1c < 7.0%) who demonstrated decreased time < 3.9 mmol ⁄ l while remaining within target HbA 1c , and HbA 1c NonResponders (baseline HbA 1c ‡ 7.0%, HbA 1c reduction less than 0.5%). Subjects participated in semi-structured interviews focusing on their psychosocial experiences with continuous glucose monitoring.Results Three major themes were identified that differentiated Responders (including both the HbA 1c and Hypoglycaemia groups) from Non-Responders: (i) coping with frustrations-Responders used self-controlled rather than emotions-based coping when faced with continuous glucose monitoring frustrations; (ii) use of information-Responders used retrospective pattern analysis, not just minute-by-minute data analysis, in glycaemic management; (iii) 'significant other' ⁄ spousal involvement-Responders endorsed interest, encouragement and participation by their loved ones. Both Responders and Non-Responders expressed body image concerns when wearing continuous glucose monitoring devices.Conclusions This qualitative study points to the importance of coping skills, retrospective review of data, and 'significant other' involvement in the effective use of continuous glucose monitoring. These findings will inform clinical initiatives to improve patient selection and training in the use of this new technology and have served as the basis for development of quantitative surveys to be used in clinical practice.

OBJECTIVE -The purpose of this study was to identify psychosocial issues related to diabetes, approaches to self-care, self-perceptions, and social interactions among insulin pump users with type 1 diabetes.RESEARCH DESIGN AND METHODS -Adult insulin pump users participated in focus groups loosely formed on the basis of A1C level. Transcripts of focus group meetings were coded into themes by five reviewers using NVivo2 qualitative software.RESULTS -Thirty adults with long-term diabetes participated in five focus groups: two with low mean ϮSD A1C (6.8 Ϯ 0.4%), one with mid A1C (7.80 Ϯ 0.3%), and two with high A1C (9.1 Ϯ 0.5%). Three major themes were identified: impact on diabetes self-care, emotional reactions to the insulin pump, body image, and social acceptance. Participants who described the pump as a tool to meet glycemic goals also described a more active approach to diabetes and had better glycemic control; those who discussed the pump as a panacea described more passive self-care and had poorer glycemic control. Low A1C groups reported that starting the insulin pump reminded them of feelings they experienced at their initial diabetes diagnosis, whereas the high A1C groups did not report these feelings. Women were more concerned than men about body image and social acceptance with pump use. CONCLUSIONS -Active participation in self-care, realistic expectations of pump use, and emotional recall of diabetes diagnosis were associated with better glycemic control. Interventions to improve diabetes management with pump use should include evaluation and discussion of active versus passive approaches to self-care, recall of diabetes diagnosis, expectations of the pump, and pump-related self-consciousness and body image concerns. The roles of these factors in optimal diabetes management warrant further investigation. Diabetes Care 30:549 -554, 2007