I have never been invited-A cross-sectional explorative study of family members' experiences of encounters with healthcare professionals in diabetes care.

AIM: To explore the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals and feelings of alienation in encounters with professional diabetes care. METHODS: A cross-sectional explorative quantitative and qualitative design. The Family Involvement and Alienation Questionnaire-Revised (FIAQ-R), including an open-ended question, was answered by 37 family members of adult persons with type 1 diabetes. Analyses included descriptive statistics and qualitative analysis. The study has received ethical approval. RESULTS: Family members rated the approach of the healthcare professionals as being somewhat positive and considered that the approach towards them is important. They only felt partially alienated from the professional care. Qualitative data revealed that the family members often lacked direct access to the professional care and that their involvement was dependent on their relationship with the person with diabetes. Findings highlighted that the family members' wish to be involved in the care was sometimes unanswered. CONCLUSION: Based on the findings, it is reasonable to stress the importance of considering family members' perspectives and involving them in diabetes care to improve overall patient support.

Impact of an Acceptance and Commitment Therapy programme on HbA1c, self-management and psychosocial factors in adults with type 1 diabetes and elevated HbA1c levels: a randomised controlled trial.

OBJECTIVE: To evaluate the impact of an Acceptance and Commitment Therapy (ACT) programme, tailored for people living with type 1 diabetes, on glycated haemoglobin (HbA1c), self-management and psychosocial factors among individuals with HbA1c>60 mmol/mol compared with treatment as usual (TAU). SETTING: An endocrinologic clinic in Sweden. PARTICIPANTS: In this randomised controlled trial, 81 individuals with type 1 diabetes, aged 18-70 years with HbA1c>60 mmol/mol, were randomly assigned to either an ACT group intervention or TAU. Exclusion criteria were: unable to speak Swedish, untreated or severe psychiatric disease, cortisone treatment, untreated thyroid disease and newly started insulin pump therapy. At the 2-year follow-up, HbA1c was measured in 26 individuals. INTERVENTION: The ACT programme comprised seven 2-hour sessions held over 14 weeks and focused on acceptance of stressful thoughts and emotions, and to promote value-based committed action. OUTCOMES: The primary outcome was HbA1c, and the secondary outcomes were measures of depression, anxiety, general stress, fear of hypoglycaemia, diabetes distress, self-care activities, psychological flexibility (general and related to diabetes) and quality of life. The primary endpoint was HbA1c 2 years after the intervention programme. Linear mixed models were used to test for an interaction effect between measurement time and group. RESULTS: Likelihood ratio test of nested models demonstrated no statistically significant interaction effect (χ2=0.49, p=0.485) between measurement time and group regarding HbA1c. However, a statistically significant interaction effect (likelihood ratio test χ2=12.63, p<0.001) was observed with improved scores on The Acceptance and Action Questionnaire in the intervention group after 1 and 2 years. CONCLUSIONS: No statistically significant difference was found between the groups regarding the primary outcome measure, HbA1c. However, the ACT programme showed a persistent beneficial impact on psychological flexibility in the intervention group. The dropout rate was higher than expected, which may indicate a challenge in this type of study. TRIAL REGISTRATION NUMBER: NCT02914496.

Psychometric Evaluation of the Swedish Acceptance and Action Diabetes Questionnaire: A Rasch Analysis.

Background and purpose: The Acceptance and Action Diabetes Questionnaire (AADQ) is a tool for assessing the acceptance of thoughts and emotions related to diabetes in people living with the disease. This study aimed to examine the psychometric properties of the Swedish version of AADQ (Swe-AADQ) in a sample of adults with type 1 diabetes. Methods: To examine the psychometric properties of the Swe-AADQ, the Rasch model was used. Data for 120 individuals were included. Results: The Swe-AADQ showed an acceptable fit to the Rasch model. A sufficiently high value of the separation index indicated a capacity to distinguish between different levels of acceptance in the sample. The seven-point Likert scale was reduced to three categories suggesting an improvement in the ordering of the item thresholds. Conclusions: The Swe-AADQ possesses reasonable quality in terms of reliability and validity. However, there are some deficiencies regarding the categorization of the response rating that should be addressed.

Living with Type 1 Diabetes as Experienced by Adults with Prolonged Elevated HbA1c: A Qualitative Study.

INTRODUCTION: High HbA1c levels in type 1 diabetes (T1D) are associated with increased risk of micro- and macrovascular complications and severe diabetes distress. A more comprehensive understanding of the adult perspective of living with T1D can improve the quality of care. We aimed to describe experiences of living with T1D as an adult with prolonged elevated HbA1c. METHODS: Thirteen adults with T1D and HbA1c > 60 mmol/mol (7.6%) for at least 1 year were individually interviewed via a digital platform. The interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: The analysis identified an overarching theme, "a lifelong follower", and generated two main categories describing study participants' experience: constraining and manageable. Constraining experiences were explained in obligated control, loss of control, environmental impact, and consequences of diabetes. Manageable experiences were described in everyday life, approach to diabetes, and support in life. Diabetes knowledge in health care and in the general public, and individualized care were important factors in feeling understood, safe, and supported. CONCLUSIONS: The findings revealed the diverse experiences of adults with prolonged elevated HbA1c. Living with T1D, a lifelong non-chosen follower, could be perceived as constraining but manageable in different degrees. A person-centered care approach addressing both dimensions may be beneficial. Experiences of living with and managing diabetes are multifaceted and intertwined with life context and medical prerequisites.

Acceptance and commitment therapy (ACT) for adult type 1 diabetes management: study protocol for a randomised controlled trial.

INTRODUCTION: Integrating diabetes self-management into daily life involves a range of complex challenges for affected individuals. Environmental, social, behavioural and emotional psychological factors influence the lives of those with diabetes. The aim of this study is to evaluate the impact of a stress management group intervention based on acceptance and commitment therapy (ACT) among adults living with poorly controlled type 1 diabetes. METHODS AND ANALYSIS: This study will use a randomised controlled trial design evaluating treatment as usual (TAU) and ACT versus TAU. The stress management group intervention will be based on ACT and comprises a programme divided into seven 2-hour sessions conducted over 14 weeks. A total of 70 patients who meet inclusion criteria will be recruited over a 2-year period with follow-up after 1, 2 and 5 years.The primary outcome measure will be HbA1c. The secondary outcome measures will be the Depression Anxiety Stress Scales, the Swedish version of the Hypoglycemia Fear Survey, the Swedish version of the Problem Areas in Diabetes Scale, The Summary of Self-Care Activities, Acceptance Action Diabetes Questionnaire, Swedish Acceptance and Action Questionnaire and the Manchester Short Assessment of Quality of Life. The questionnaires will be administered via the internet at baseline, after sessions 4 (study week 7) and 7 (study week 14), and 6, 12 and 24 months later, then finally after 5 years. HbA1c will be measured at the same time points.Assessment of intervention effect will be performed through the analysis of covariance. An intention-to-treat approach will be used. Mixed-model repeated measures will be applied to explore effect of intervention across all time points. ETHICS AND DISSEMINATION: The study has received ethical approval (Dnr: 2016/14-31/1). The study findings will be disseminated through peer-reviewed publications, conferences and reports to key stakeholders. TRIAL REGISTRATION NUMBER: NCT02914496; Pre-results.

A longitudinal study of fear of hypoglycaemia in adults with type 1 diabetes.

AIMS: To investigate fear of hypoglycaemia (FoH) longitudinally in a cross-sectional study of adult patients with type 1 diabetes. Specifically, we investigated two subgroups of patients who over 4 years either showed a substantial increase or decrease in level of FoH to identify factors associated with changes in FoH. METHODS: The Swedish version of the Hypoglycaemia Fear Survey (HFS) along with a questionnaire to assess hypoglycaemia history was sent by mail to 764 patients in 2010. The responders in 2010 (n = 469) received another set of the same two questionnaires in 2014. HbA1c, insulin regimen, weight and creatinine from 2010 and 2014 were obtained from medical records. Those with an absolute difference in HFS scores ≥ 75th percentile were included in the subgroup analyses. Statistical analyses included one-sample t tests, chi-square and McNemar's test. RESULTS: The absolute difference in the HFS total score (n = 347) between 2010 and 2014 was m = ±7.6, SD ± 6. In the increased FoH group, more patients reported a high level of moderate hypoglycaemic episodes as well as impaired awareness of hypoglycaemia in 2014 compared with the decreased FoH group. There were more subjects in the increased FoH group with insulin pumps in 2014 and in 2010. In the decreased FoH group, more patients had a high frequency of daily self-monitoring of blood glucose (SMBG) in 2010 and in 2014. CONCLUSIONS: Fear of hypoglycaemia is stable across time for most patients. Changes in fear level are associated with changes in hypoglycaemia frequency. Thus, asking patients about changes in hypoglycaemia experiences is of great importance.

A cognitive behavior therapy-based intervention among poorly controlled adult type 1 diabetes patients--a randomized controlled trial.

OBJECTIVE: To examine the impact of a Cognitive Behavior Therapy (CBT)-based intervention on HbA(1c), self-care behaviors and psychosocial factors among poorly controlled adult type 1 diabetes patients. METHODS: Ninety-four type 1 diabetes patients were randomly assigned to either an intervention group or a control group. The intervention was based on CBT and was mainly delivered in group format, but individual sessions were also included. All subjects were provided with a continuous glucose monitoring system (CGMS) during two 3-day periods. HbA(1c), self-care behaviors and psychosocial factors were measured up to 48 weeks. RESULTS: Significant differences were observed with respect to HbA(1c) (P<0.05), well-being (P<0.05), diabetes-related distress (P<0.01), frequency of blood glucose testing (P<0.05), avoidance of hypoglycemia (P<0.01), perceived stress (P<0.05), anxiety (P<0.05) and depression (P<0.05), all of which showed greater improvement in the intervention group compared with the control group. A significant difference (P<0.05) was registered with respect to non-severe hypoglycemia, which yielded a higher score in the intervention group. CONCLUSION: This CBT-based intervention appears to be a promising approach to diabetes self-management. PRACTICE IMPLICATIONS: Diabetes care may benefit from applying tools commonly used in CBT. For further scientific evaluation in clinical practice, there is a need for specially educated diabetes care teams, trained in the current approach, as well as cooperation between diabetes care teams and psychologists trained in CBT.

Experience from a behavioural medicine intervention among poorly controlled adult type 1 diabetes patients.

AIM: To describe experience from a behavioural medicine intervention among poorly controlled adult type 1 diabetes patients, in terms of feasibility, predictors and associations of improved glycaemic control. METHODS: Data were collected on 94 poorly controlled adult type 1 diabetes patients who were randomised to a study evaluating the effects of a behavioural medicine intervention. Statistics covered descriptive and comparison analysis. Backward stepwise regression models were used for predictive and agreement analyses involving socio-demographic and medical factors, as well as measures of diabetes self-efficacy (DES), diabetes locus of control (DLOC), self-care activities (SDSCA), diabetes-related distress (Swe-PAID-20), fear of hypoglycaemia (HFS), well-being (WBQ), depression (HAD) and perceived stress (PSS). RESULTS: The participation rate in the study was 41% and attrition was 24%. Of those patients actually participating in the behavioural medicine intervention, 13% withdrew. From the regression models no predictors or associations of improvement in HbA(1c) were found. CONCLUSIONS: The programme proved to be feasible in terms of design and methods. However, no clear pattern was found regarding predictors or associations of improved metabolic control as the response to the intervention. Further research in this area is called for.

Psychometric evaluation of the Swedish version of the Hypoglycaemia Fear Survey.

OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the Swedish version of the Hypoglycaemia Fear Survey (Swe-HFS) for use among Swedish-speaking patients with type 1 diabetes. METHODS: The HFS was translated using the forward-backward translation method and was thereafter answered by 325 type 1 patients. The psychometric properties were investigated using exploratory factor analysis, Cronbach's alpha, content and convergent validity. RESULTS: The factor analysis showed that a three-factor solution was reasonable with the subscales Behaviour/Avoidance (10 items), Worry (6 items) and Aloneness (4 items). Cronbach's alpha coefficient for the total score was 0.85. The result also supports the instrument's content validity and convergent validity. CONCLUSION: The Swedish version of the HFS appears to be a reliable and valid instrument for measuring fear of hypoglycaemia (FoH) in type 1 patients. PRACTICE IMPLICATIONS: The results from this study suggest that the Swe-HFS, an instrument that is brief and easy to administer, may be valuable in clinically assessing FoH among patients with type 1 diabetes.

The psychometric properties of the Swedish version of the Problem Areas in Diabetes Scale (Swe-PAID-20): scale development.

BACKGROUND: Considering the importance of psychological aspects in the management of diabetes, there is a need of validated measurements in this area. Such tools make it possible to screen patients for specific conditions as well as they serve as reliable measures when evaluating medical, psychological and educational interventions. OBJECTIVES: The current study was conducted to adapt the Problem Areas in Diabetes Scale for use among Swedish-speaking patients with type 1 diabetes and to evaluate the psychometric properties. DESIGN: Methodological research design was used in this study. SETTING AND PARTICIPANTS: A convenience sample of 325 type 1 diabetes patients was systematically selected from the local diabetes registry of a university hospital in Stockholm, Sweden. METHODS: Following the linguistic adaptation using the forward-backward translation method, the 20-item PAID was answered by the selected patients. Statistics covered exploratory factor analysis, Cronbach's alpha, convergent validity and content validity. RESULTS: In the factor analysis a three-factor solution was found to be reasonable with the sub-dimensions diabetes-related emotional problems (15 items), treatment-related problems (2 items) and support-related problems (3 items). Cronbach's alpha coefficient for the total score was 0.94 and varied between 0.61 and 0.94 in the three subscales. The findings also gave support for the convergent and content validity. CONCLUSIONS: The Swedish version of the Problem Areas in Diabetes Scale (Swe-PAID-20) seems to be a reliable and valid outcome for measuring diabetes-related emotional distress in type 1 diabetes patients.