Adolescents' perceptions of participation in group education using the Guided Self-Determination-Young method: a qualitative study.

OBJECTIVE: Guided Self-Determination (GSD) is a person-centered communication and reflection method. Education in groups may have a greater impact than the content of the education, and constructive communication between parents and adolescents has been shown to be of importance. The purpose of this study was to describe adolescents' perceptions of participation in group education with the Guided Self-Determination-Young (GSD-Y) method, together with parents, in connection with the introduction of continuous subcutaneous insulin infusion. RESEARCH DESIGN AND METHODS: In the present qualitative interview study, 13 adolescents with type 1 diabetes were included after completing a GSD-Y group education program in connection with the introduction of continuous subcutaneous insulin infusion at three hospitals located in central Sweden. The adolescents were interviewed individually, and qualitative content analysis was applied to the interview transcripts. RESULTS: Two categories that emerged from the analysis were the importance of context and growing in power through the group process. An overarching theme that emerged from the interviews was the importance of expert and referent power in growing awareness of the importance of self-management as well as mitigating the loneliness of diabetes. CONCLUSIONS: GSD-Y has, in various ways, mitigated experiences of loneliness and contributed to conscious reflection about self-management in the group (referent power) together with the group leader (expert power). Overall, this highlights the benefits of group education, and the GSD method emphasizes the person-centered approach. TRIAL REGISTRATION NUMBER: ISRCTN22444034; Results.

Parent's perception of their children's health, quality of life and burden of diabetes: testing reliability and validity of 'Check your Health' by proxy.

AIM: To test the validity and reliability of the 'Check your Health by proxy' instrument in parents to children with diabetes aged 8-17 years. METHODS: One hundred and ninety-one caregivers and their children, aged 8-17 years, were included. All completed the 'Check your Health' questionnaire measuring quality of life and burden of diabetes, DISABKIDS self- or proxy version, and 45 completed the same questionnaires 2 weeks later. RESULTS: Test-retest reliability on the 'Check your Health' questionnaire by proxy was moderate to strong (r = 0.48-0.74), p < 0.002). Convergent validity was weak to moderate (r = 0.15-0.49, p < 0.05). The instrument showed acceptable discriminant validity. Parents reported lower scores than the children on emotional health and social relations and higher scores on physical and emotional burden and higher burden on quality of life. Poorer social relationships and quality of life were associated with higher reported disease severity. The diabetes burden domain of the questionnaire correlated to perceived severity of diabetes and to perceived health. Discriminant validity showed that poorer social relationships and quality of life were associated with higher severity of the disease. The diabetes burden domain of 'Check your Health' by proxy showed discriminant validity on perceived severity of diabetes. CONCLUSIONS: The instrument 'Check your Health' by proxy showed acceptable psychometric characteristics in parents to young people (8-17 years of age) with diabetes. We also concluded that parents reported that their children had lower health and higher burden of diabetes than the children did, and it correlated to reported disease severity.

Does treatment with an insulin pump improve glycaemic control in children and adolescents with type 1 diabetes? A retrospective case-control study.

OBJECTIVE: To investigate long-term effects on glycaemic control, ketoacidosis, serious hypoglycaemic events, insulin requirements, and body mass index standard deviation scores (BMI-SDS) in children and adolescents with type 1 diabetes starting on continuous subcutaneous insulin infusion (CSII) compared with children and adolescents treated with multiple daily injections (MDI). METHODS: This retrospective case-control study compares 216 patients starting CSII with a control group on MDI (n = 215), matched for glycated hemoglobin (HbA1c), sex, and age during a 2-yr period. Variables collected were gender, age, HbA1c, insulin requirement, BMI, BMI-SDS, ketoacidosis, and serious hypoglycaemic events. RESULTS: In the CSII group there was an improvement in HbA1c after 6 and 12 months compared with the MDI group. For boys and girls separately the same effect was detected after 6 months, but only for boys after 12 months. The incidence of ketoacidosis was higher in the CSII group compared with the MDI group (2.8 vs. 0.5/100 person-yr). The incidences of severe hypoglycaemic episodes per 100 person-yr were three in the CSII group and six in the MDI group (p < 0.05). After 6, 12, and 24 months, the insulin requirement was higher in the MDI group. CONCLUSIONS: This study shows that treatment with CSII resulted in an improvement in HbA1c levels up to 1 yr and decreased the number of severe hypoglycaemic events, but the frequency of ketoacidosis increased. The major challenge is to identify methods to maintain the HbA1c improvement, especially among older children and teenagers, and reduce the frequency of ketoacidosis.

A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion--a study protocol.

BACKGROUND: Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrollment. METHODS/DESIGN: This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment. DISCUSSION: In this study, we will assess the effect of starting an CSII together with the model of GSD to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family.

Teenagers' perceptions of factors affecting decision-making competence in the management of type 1 diabetes.

AIMS: Decision-making is an important prerequisite for empowerment. The aim of this study was to explore teenagers' perceptions of factors affecting decision-making competence in diabetes management. BACKGROUND: A previous study that assessed an empowerment programme for teenagers with diabetes showed no effects on metabolic control or empowerment outcomes, which is not in accordance with results from studies on adult diabetes patients. The definition of empowerment highlights the patient's own responsibility for decision-making. Earlier studies have shown that many teenagers' may not be mature in decision-making competence until late adolescence. To explore the significance of decision-making competence on the effectiveness of empowerment education we wanted to explore teenagers' own view on factors affecting this competence. DESIGN: An explorative, qualitative interview study was conducted with 31 teenagers with type 1 diabetes, aged 12-17 years. METHODS: The teenagers were interviewed two weeks after completing an empowerment education programme. The interviews were analysed using qualitative content analysis. RESULTS: Five categories stood out as important for decision-making competence: cognitive maturity, personal qualities, experience, social network and parent involvement. Based on the content in the interviews and the five categories, we made an interpretation and formulated an overall theme: 'Teenagers deserve respect and support for their short-comings during the maturity process'. CONCLUSION: Our conclusion is that teenagers deserve respect for their immature decision-making competence. Decision-making competence was described as cognitive abilities, personal qualifications and experience. To compensate for the deficiencies the teenagers deserve constructive support from their social network and the essential support is expected to come from their parents. RELEVANCE TO CLINICAL PRACTICE: These findings can be useful for diabetes team members in supporting teenagers with diabetes and their parents both in individual meetings and when planning and delivering group education.

Teenagers with diabetes: self-management education and training on a big schooner.

The aims of this study are to evaluate whether diabetic teenagers participating in a group educational programme, 'the schooner programme', differ from non-participants in attitudes towards diabetes and self-care, and to evaluate the impact on the attitudes, HbA1c and treatment of the programme. Ninety teenagers aged 14-18 years attended the programme. Attitudes towards diabetes and self-care were measured with a validated questionnaire. Medical data were collected from the medical records. The participants reported more positive attitudes towards diabetes and self-care and more frequent contacts with others with diabetes monitored blood glucose more often and felt less disturbed by diabetes than non-participants. The programme had positive impact on attitudes towards diabetes. There was no change in HbA1c, but the use of insulin pumps was more frequent among participants after the programme. To get teenagers attracted to group education, the diabetes care team needs to influence them towards more positive attitudes.