Children's and adolescent's narratives about pain and negative experiences in diabetes treatment.

Pain and fear associated with needle procedures have been found to be more common among children and adolescents treated for type 1 diabetes (T1D) than among others in their age group. Furthermore, high glycated haemoglobin (HbA1c) values are associated with needle-related fear. AIM: To describe negative experiences of needle procedures in childhood diabetes treatment from children's and adolescents' own perspectives. METHODS: Short written narratives (n = 83) and drawings (n = 2) from children and adolescents treated for T1D, aged 7-18 years, were subjected to inductive qualitative content analysis. RESULTS: Negative experiences with needle procedures had many facets, such as pain and fear, changing over time and affecting everyday life. All kinds of needle procedures caused difficulties, but venipunctures were described as the worst. CONCLUSION: All needle procedures involved in diabetes treatment are potentially experienced as creating pain and fear, but the negative experiences are multifaceted and vary between individuals. These experiences create suffering for children and adolescents, and influence their daily lives. Besides finding techniques to decrease the number of needle procedures in the treatment, research should focus on implementing methods to decrease pain, fear, and other negative experiences as well as to promote self-coping. This is urgent, since needle-related fear has an impact on glycaemic control and therefore increases the risk of long-term complications. CLINICAL IMPLICATIONS: When caring for children and adolescents with diabetes, their previous experiences with needle procedures need to be considered.

Needle-Related Pain, Affective Reactions, Fear, and Emotional Coping in Children and Adolescents With Type 1 Diabetes: A Cross-Sectional Study.

BACKGROUND: The self-care of type 1 diabetes (T1D) includes undergoing procedures with needles several times daily, which may cause pain and fear. AIMS: The aim was to identify the degree of perceived pain, affective reactions, fear, and emotional coping among children and adolescents with T1D. DESIGN: A cross-sectional survey was performed. METHODS: Children and adolescents 7-18 years of age (n = 197) and their parents (n = 123) completed the Coloured Analogue Scale (CAS), the Facial Affective Scale (FAS), the Diabetes Fear of Injection Questionnaire (D-FISQ), and the Faces Emotional Coping Scale (FECS) in relation to needle procedures. RESULTS: The higher the values of the CAS, FAS and D-FISQ scores, the lower values for coping were reported by children and adolescents regarding treatment with insulin pen or pump, blood glucose test, and venipuncture (p < .001). Patients reported strong negative affect regarding insulin injections (35%) and blood glucose tests (32%), as well as negative affect (48%, 69%) and substantial pain (27%, 50%) for inserting a pump needle and venipuncture, respectively. Parents reported significantly higher values than children on all scales and procedures except D-FISQ (blood glucose tests) and FECS (venipuncture). CONCLUSIONS: Children and adolescents who perceive greater pain during needle-related procedures have poorer coping ability. Pediatric diabetes teams need to identify those in need of extra support to develop pain coping strategies.

The Faces Emotional Coping Scale as a self-reporting instrument for coping with needle-related procedures: An initial validation study with children treated for type 1 diabetes.

The aim of this study was to determine the concurrent and content validity, sensitivity and inter-rater reliability of the Faces Emotional Coping Scale (FECS) to evaluate the children's anticipation of the level of emotional coping in conjunction with a venepuncture. A total of 153 children with type 1 diabetes and 86 of their parents participated in the study. The age of the children, 76 of whom were boys, ranged from 7 to 18 years. The child and his or her parent reported the child's coping ability, and the child reported the pain intensity and unpleasantness of a venepuncture. The child also wrote a short narrative about his or her experience of the needle procedure. The FECS correlated negatively with the Coloured Analogue Scale and the Facial Affective Scale and positively with the FECS by proxy. The narratives of 90 children correlated negatively with the FECS. Younger children reported significantly lower scores than older children did regarding their ability to cope with a venepuncture. The children's scores on the FECS showed good agreement with the parents' scores. In this study, the FECS was deemed valid for measuring children's ability to cope with their emotions when undergoing needle-related procedures like venepuncture.

Guided self-determination-young versus standard care in the treatment of young females with type 1 diabetes: study protocol for a multicentre randomized controlled trial.

BACKGROUND: Female adolescents with type 1 diabetes mellitus (T1DM) have the most unsatisfactory glycaemic control of all age groups and report higher disease burden, poorer perceived health, and lower quality of life than their male counterparts. Females with T1DM face an excess risk of all-cause mortality compared with men with T1DM. New methods are needed to help and support young females with T1DM to manage their disease. A prerequisite for successful diabetes management is to offer individualized, person-centred care and support the patient's own motivation. Guided self-determination (GSD) is a person-centred reflection and problem-solving method intended to support the patient's own motivation in the daily care of her diabetes and help develop skills to manage difficulties in diabetes self-management. GSD has been shown to improve glycaemic control and decrease psychosocial stress in young women with T1DM. The method has been adapted for adolescents and their parents, termed GSD-young (GSD-Y). The aim of this study was to evaluate whether an intervention with GSD-Y in female adolescents with T1DM leads to improved glycaemic control, self-management, treatment satisfaction, perceived health and quality of life, fewer diabetes-related family conflicts, and improved psychosocial self-efficacy. METHODS/DESIGN: This is a parallel-group randomized controlled superiority trial with an allocation ratio of 1:1. One hundred female adolescents with T1DM, 15-20 years of age, and their parents (if < 18 years of age), will be included. The intervention group will receive seven individual GSD-Y education visits over 3 to 6 months. The control group will receive standard care including regular visits to the diabetes clinic. The primary outcome is level of glycaemic control, measured as glycosylated haemoglobin (HbA1c). Secondary outcomes include diabetes self-management, treatment satisfaction, perceived health and quality of life, diabetes-related family conflicts, and psychosocial self-efficacy. Data will be collected before randomization and at 6 and 12 months. DISCUSSION: Poor glycaemic control is common in female adolescents and young adults with T1DM. Long-standing hyperglycaemia increases the risks for severe complications and may also have an adverse impact on the outcome of future pregnancies. In this study, we want to evaluate if the GSD-Y method can be a useful tool in the treatment of female adolescents with T1DM. TRIAL REGISTRATION: Current controlled trials, ISRCTN57528404 . Registered on 18 February 2015.

Medical services of a multicultural summer camp event: experiences from the 22nd World Scout Jamboree, Sweden 2011.

BACKGROUND: Prevention and treatment of medical issues are the main task of a health service at a youth camp. However, only few reports about organisation and implementation of camp health care are available. This makes it difficult for future camp directors to plan and estimate the health care needed for a certain camp size. We summarize the experience in planning and running health care for the 22nd World Scout Jamboree (WSJ) 2011 in Sweden. METHODS: During the WSJ, 40,061 participants from 146 nations were gathered in southern Sweden to a 12 day summer camp. Another 31,645 people were visitors. Members for the medical service were 153 volunteering medical professionals with different language and cultural backgrounds from 18 different countries. RESULTS: Of 40,061 participants 2,893 (7.3%) needed medical assistance. We found an equal distribution of cases to approximately one third surgical, one third medical and one third unspecified cases. Much energy was spent on health prevention, hygiene measures and organizing of psychological support. CONCLUSIONS: A youth camp with a multicultural population and a size of a small city demands flexible staff with high communication skills. Special attention should be paid in prevention of contagious diseases and taking care of psychological issues.

Clarifying responsibility for self-management of diabetes in adolescents using insulin pumps--a qualitative study.

AIM: To gain insight into and generate theoretical knowledge about the processes involved when insulin pump-treated adolescents take or miss taking their bolus doses. BACKGROUND: Insulin pump treatment is considered the most physiological way to imitate the healthy body's insulin profile in adolescents with diabetes. Despite insulin pump treatment, it is hard to maintain near-normal glucose control in adolescents; one reason for this is missed bolus doses with meals. METHOD: In this qualitative interview study, the grounded theory method was chosen as a model for the collection and analysis of data. Twelve adolescents (five boys and seven girls, mean age: 14·4 years, range: 12-19 years) from different Swedish paediatric diabetes clinics, four parents and one paediatric diabetes nurse were interviewed during 2008 and 2009. Two adolescents and two parents were re-interviewed after approximately 10 months. Data from clinical visits and diabetes camps were used to verify emerging categories. FINDINGS: Responsibility in the context of taking or missing bolus doses emerged as the core category. It is elaborated and explained through three subcategories: distribution of responsibility, transfer of responsibility and clarification of responsibility. The findings describe the need to clarify the responsibility for diabetes self-management in continuous negotiations between adolescents and parents to avoid missed doses. CONCLUSION: Negotiations to clarify the responsibility for diabetes self-management must be a continuous process between adolescents and parents. Diabetes care teams can facilitate and encourage these negotiations.

Reasons for missed meal-time insulin boluses from the perspective of adolescents using insulin pumps: 'lost focus'.

OBJECTIVE: To investigate the reasons for missed bolus doses and strategies for avoiding this among adolescents using insulin pumps. METHODS: The grounded theory method was chosen as a model for the collection and analysis of data. Data were collected through interviews with 12 adolescents treated with an insulin pump (5 males and 7 females, mean age 14.4 yr) from different Swedish pediatric diabetes clinics. All interviews were tape-recorded and immediately transcribed. RESULTS: The core category 'lost focus' emerged as representing the main reason for missed bolus doses. Identified subcategories were delayed lost focus, directly lost focus, and totally lost focus. There was a risk of delayed lost focus when the adolescent used postprandial bolusing. Focus could also be lost directly in connection with the start of the meal. Totally lost focus could occur when the adolescent perceived the impact of diabetes as too high or tried to neglect that he or she had it. The category 'agreements about reminders' appeared to be the main strategy for avoiding missed bolus doses; subcategories were personal reminders and technical reminders. The adolescent needed to be involved in these agreements; otherwise, the reminding could be seen as nagging and did not work. CONCLUSION: The results may help diabetes care teams understand the circumstances in which adolescents miss their bolus doses. This understanding may make it easier to discuss missed doses and strategies for avoiding this with adolescents and support negotiations over agreements about reminders between them and their parents.

Missed bolus doses: devastating for metabolic control in CSII-treated adolescents with type 1 diabetes.

OBJECTIVE: To investigate the management of continuous subcutaneous insulin infusion (CSII) in adolescents with type 1 diabetes including their administration of bolus doses and to study relationships between insulin omission and metabolic control, body mass index, daily frequency of self-monitoring of blood glucose (SMBG) and bolus doses, health-related quality of life (HRQOL), the burden of diabetes and treatment satisfaction. METHODS: Ninety CSII-treated (> or =6 months) adolescents aged 12-18 yr, from four diabetes clinics in Sweden, participated in the study. The adolescents recorded their meal intake the previous day, which was compared with downloaded pump data, and the frequency of missed boluses was stated. Haemoglobin A1c (HbA1c) and diabetes-related data were recorded. HRQOL and treatment satisfaction were measured with questionnaires. RESULTS: Thirty-eight per cent of the adolescents had missed >15% of the doses the previous day, those had higher HbA1c (7.8 +/- 1.0 vs. 7.0 +/- 1.2%, p = 0.001), took fewer daily boluses (3.8 +/- 1.7 vs. 5.3 +/- 1.7, p < 0.001) and SMBG (2.4 +/- 1.8 vs. 3.6 +/- 1.8, p = 0.003), were less satisfied with their treatment (4.8 vs. 5.3, scale 0-6, p = 0.029) and perceived the medical treatment more negatively (72.1 vs. 79.7, scale 0-100, p = 0.029). Multiple linear regression analysis showed that the variations in HbA1c could be explained by the frequency of bolus doses (p = 0.013) and SMBG per day (p < 0.0001) adjusted for duration and age (r(2) = 0.339, p < 0.0001). CONCLUSION: Insulin omission was common. Those who missed doses were less satisfied and perceived more impact with the treatment. The frequencies of daily boluses and SMBG were associated with metabolic control. Diabetes teams need strategies to guide adolescents on how to avoid insulin omission.

Treatment with CSII in two infants with neonatal diabetes mellitus.

This article reports the case studies of two children with neonatal onset of diabetes who were treated with continuous subcutaneous insulin infusion (CSII) from within 4 d to 3 wk of the diagnosis. The aim was to describe diabetes-related and insulin-pump-specific data in relation to growth and various feeding patterns when using CSII in infants with diabetes during their first year of life. The two children's medical records were scrutinized. The results showed that both children had good metabolic control [median hemoglobin A1c (HbA1c) 5.3 and 5.7%, high performance liquid chromatography (HPLC) method, reference: 3.4-5.0%. Compared with the Diabetes Control and Complications Trial (DCCT) HbA1c units, Swedish units give approximately 1% point lower results]. No episodes of severe hypoglycemia or diabetic ketoacidosis have been demonstrated. The children had normal growth patterns, as they followed a normal feeding regime for their age. The meal doses of insulin were given over 12 min to 3 h. The children had diluted Humalog((R)) insulin 10 U/mL (Eli Lilly & Co, Indianapolis, IN, USA) in their pumps. Different types of insulin pumps were used, namely, the Minimed 507C and 508 (Medtronic, Minneapolis, MN, USA), and a Disetronic H-tron V100 (Roche Diagnostics, Basel, Switzerland). The children used different types of infusion sets. Neither family reported any technical problems with their pump system. CSII was an effective and safe treatment for the two children suffering from neonatal diabetes. This offers an alternative for other infants with a similar diagnosis.