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  • 1.
    Brorsson, Anna Lena
    et al.
    Karolinska Inst, Sodersjukhuset, Dept Clin Sci & Educ, Stockholm, Sweden;Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden.
    Leksell, Janeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden.
    Franko, Mikael Andersson
    Karolinska Inst, Sodersjukhuset, Dept Clin Sci & Educ, Stockholm, Sweden.
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Karolinska Inst, Sodersjukhuset, Dept Clin Sci & Educ, Stockholm, Sweden.
    A person-centered education for adolescents with type 1 diabetes: A randomized controlled trial2019In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 20, no 7, p. 986-996Article in journal (Refereed)
    Abstract [en]

    Introduction: Young people with type 1 diabetes and their parents need to receive person-centered education to be able to manage their diabetes. Guided Self-Determination-Young (GSD-Y) is a person-centered communication and reflection education model that can be used in educational program for young people with type 1 diabetes.

    Objective: To evaluate whether GSD-Y leads to improved glycaemic control, increased self-perceived health and health-related quality of life, fewer diabetes-related family conflicts, and improved self-efficacy in a group-based intervention for adolescents starting continuous subcutaneous insulin infusion (CSII) and their parents.

    Methods: This randomized controlled trial included 71 adolescents starting CSII. Participants were followed for 12 months. The intervention group (n = 37) attended seven group training sessions over a period of 5 months, using the GSD-Y model, the control group received standard care. Variables evaluated were HbA1c, self-perceived health, health-related quality of life, family conflicts, self-efficacy, and usage of continuous glucose monitoring.

    Results: When adjusted for sex and family conflicts, there was a difference in glycaemic control between the groups at 12 months, favoring the intervention group (62 vs 70 mmol/mol, P = .009). When analyses were performed on boys and girls separately and adjusted for family conflicts, the only difference detected was for boys after 12 months (P = .019). The intervention showed no effect on self-perceived health, health-related related quality of life, family conflicts, or self-efficacy.

    Conclusions: An intervention with GSD-Y may have an effect on glycaemic control. The content of the GSD-Y groups may serve as a model for person-centered care in adolescents with type 1 diabetes.

  • 2. Brorsson, Anna Lena
    et al.
    Leksell, Janeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Viklund, Gunnel
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion: a study protocol2013In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 13, p. 212-Article in journal (Refereed)
    Abstract [en]

    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 enrolment.

    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.

  • 3.
    Brorsson, Anna Lena
    et al.
    Karolinska Inst & Hosp, Dept Womens & Childrens Hlth, S-17177 Stockholm, Sweden.
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Karolinska Inst, Dept Clin Sci & Educ, Stockholm, Sweden.
    Wikblad, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Viklund, Gunnel
    Karolinska Inst & Hosp, Dept Womens & Childrens Hlth, S-17177 Stockholm, Sweden.
    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.2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 3, p. 497-504Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Brorsson, Anna Lena
    et al.
    Karolinska Institutet.
    Viklund, Gunnel
    Karolinska Institutet.
    Örtqvist, Eva
    Karolinska Institutet.
    Lindholm Olinder, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Does treatment with an insulin pump improve glycaemic control in children and adolescents with type 1 diabetes?: A retrospective case-control study2014In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 16, no 7, p. 546-553Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Forsner, Maria
    et al.
    Dalarna University.
    Berggren,, Jenny
    Masaba, Jennipher
    Ekbladh, Annelie
    Lindholm Olinder, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Parents' experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion2014In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 11, no 1, p. 7-12Article in journal (Refereed)
    Abstract [en]

    Diabetes during infancy is uncommon and continuous subcutaneous insulin infusion (CSII) is the recommended treatment with such young children. However, this form of treatment has not been investigated previously from the perspective of the parents.

    The aim of this study was to determine parents' experiences of caring for a child less than two years old who had diabetes mellitus and was being treated with CSII therapy.

    Three pairs of parents were interviewed twice to elucidate their views on the initial period and on daily living. Data were submitted to qualitative content analysis and resulted in seven categories and one theme, the latter being: ‘The diabetes disease was threatening our baby's life, but then the insulin pump came as a rescuing, though challenging, angel’. Parents initially felt life had been turned upside down, but later they felt in control nearly all the time.

    It was concluded that parents of infants with diabetes are in great need of support in order to manage the disease and CSII technology. The fear of losing control and the lack of relief lead to social isolation. Educating someone close to the family could be a valuable intervention.

  • 6.
    Granström, Therese
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden.
    Forsman, Henrietta
    Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden..
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Söder Sjukhuset, Sachs Children & Youth Hosp, Stockholm, Sweden.;Söder Sjukhuset, Karolinska Inst, Dept Clin Res & Educ, Stockholm, Sweden..
    Gkretsis, Dimitrios
    Dalarna Cty Hosp, Dept Ophthalmol, Falun, Sweden..
    Eriksson, Jan W.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Granstam, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Vastmanland Cty Hosp, Dept Ophthalmol, Vasteras, Sweden..
    Leksell, Janeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Patient-reported outcomes and visual acuity after 12 months of anti-VEGF-treatment for sight-threatening diabetic macular edema in a real world setting2016In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 121, p. 157-165Article in journal (Refereed)
    Abstract [en]

    Aims: To examine objective visual acuity measured with ETDRS, retinal thickness (OCT), patient reported outcome and describe levels of glycated hemoglobin and its association with the effects on visual acuity in patients treated with anti-VEGF for visual impairment due to diabetic macular edema (DME) during 12 months in a real world setting.

    Methods: In this cross-sectional study, 58 patients (29 females and 29 males; mean age, 68 years) with type 1 and type 2 diabetes diagnosed with DME were included. Medical data and two questionnaires were collected; an eye-specific (NEI VFQ-25) and a generic health-related quality of life questionnaire (SF-36) were used.

    Results: The total patient group had significantly improved visual acuity and reduced retinal thickness at 4 months and remains at 12 months follow up. Thirty patients had significantly improved visual acuity, and 27 patients had no improved visual acuity at 12 months. The patients with improved visual acuity had significantly improved scores for NEI VFQ-25 subscales including general health, general vision, near activities, distance activities, and composite score, but no significant changes in scores were found in the group without improvements in visual acuity.

    Conclusions: Our study revealed that anti-VEGF treatment improved visual acuity and central retinal thickness as well as patient-reported outcome in real world 12 months after treatment start.

  • 7.
    Haas, Josephine
    et al.
    Karolinska Institutet Institutionen för klinisk forskning och utbildning Södersjukhuset.
    Persson, Martina
    stitutionen för klinisk forskning och utbildning Södersjukhuset.
    Brorsson, Anna Lena
    stitutionen för klinisk forskning och utbildning Södersjukhuset.
    Toft, Eva Hagström
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Department of Clinical Science and Education, Karolinska Institute; Sachs’ Children and Youth Hospital, Södersjukhuset, Stockholm.
    Guided self-determination-young versus standard care in the treatment of young females with type 1 diabetes: study protocol for a multicentre randomized controlled trial2017In: Trials, ISSN 1745-6215, E-ISSN 1745-6215, Vol. 18, article id 562Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Jammer, Ib
    et al.
    Haukeland University Bergen.
    Andersson, Christina Allansdotter
    Olinder, Anna Lindholm
    Department of Clinical Science and Education, Karolinska Institute, Södersjukhuset, 118 83 Stockholm, Sweden.
    Selander, Bo
    Wallinder, Anna Elmerfeldt
    Hansson, Stefan Rocco
    Medical services of a multicultural summer camp event: experiences from the 22nd World Scout Jamboree, Sweden 20112013In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 13, p. 187-Article in journal (Refereed)
    Abstract [en]

    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.

  • 9.
    Lindholm Olinder, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Self-management of diabetes in adolescents using insulin pumps2010Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Insulin pump treatment (CSII) is considered the most physiological way to imitate the healthy body’s insulin profile in adolescents with diabetes. However, despite the use of CSII, achieving the recommended disease control is difficult for adolescents.

    The aim of this thesis was to explore aspects of self-management of diabetes in adolescents using insulin pumps in order to describe conditions contributing to the recommended disease control.

    Three methods of bolusing (normal, dual-wave and square-wave) in connection with pasta meals were tested in a crossover study among 15 adolescents with diabetes to assess whether one method was superior in managing glucose levels. A cross-sectional study among 90 adolescents being treated with CSII was conducted to investigate the management of CSII, including the administration of bolus doses. Two qualitative interview studies, based on the grounded theory method, were performed to gain insight into the processes involved in taking bolus doses and to investigate reasons for missed bolus doses and strategies for avoiding missing them. Twelve adolescents, four parents and one diabetes specialist nurse were interviewed.

    No method of bolusing was found to be superior in managing the glucose levels after these meals. The post-prandial glucose peaks were <10 mmol/L, in 48% of the cases, regardless of bolus methods. This indicates that adolescents can be encouraged to individually test which bolus method gives them the most normal post-prandial glucose levels.

    The cross-sectional study showed that adolescents were satisfied with CSII, but that 38% had missed more than 15% of the bolus doses the day under study. The frequency of bolus doses correlated with the disease control.

    Findings from the interview study revealed the need to clarify the responsibility for diabetes self-management in continuous negotiation between adolescents and parents to avoid insulin omission. The main reason for missed boluses was lost focus, and the strategies for remembering them were agreements involving reminders.

    The thesis describes that individual dose testing, clarification of responsibility and agreements involving reminders are conditions contributing to the recommended disease control. The thesis also describes that lost focus and a lack of responsibility can lead to insulin omission and be a hindrance to achieving disease control.

    List of papers
    1. Post-prandial glucose levels following three methods of insulin bolusing: A study in adolescent girls and in comparison with girls without diabetes
    Open this publication in new window or tab >>Post-prandial glucose levels following three methods of insulin bolusing: A study in adolescent girls and in comparison with girls without diabetes
    2009 (English)In: Practical diabetes international, ISSN 1357-8170, Vol. 26, no 3, p. 110-115Article in journal (Refereed) Published
    Abstract [en]

    The aims of this study were to assess whether one method of insulin bolusing wassuperior to two others in managing two pasta meals, and to compare the glucose levelswith those of females without diabetes.Fifteen continuous subcutaneous insulin infusion (CSII)-treated adolescent femalesand 10 adolescent females without diabetes consumed two pasta meals with different fatcontents. The plasma glucose (p-glucose) values were followed using capillarymeasurement and continuous glucose monitoring (CGMS) until three hours after themeal. The CSII-treated females received the same insulin dose at every occasion as:(1) normal bolus; (2) dual-wave bolus – 60% of the dose as normal bolus and 40% overone hour; and (3) square-wave bolus – a prolonged dose over one hour.No differences were found in p-glucose peak or AUC between the bolus methodsafter either of the meals. There was a difference in p-glucose increase at one time pointafter the less fat meal; after 60 minutes the increase was greater with a square-wavebolus (Friedman’s test p<0.02). Forty-eight percent of the measurements among thediabetes adolescents showed post-prandial p-glucose levels ≤10mmol/L. Femaleswithout diabetes had earlier and lower p-glucose peak and smaller AUC.It was concluded that there were no overall differences in p-glucose excursionsbetween different methods of bolusing for these adolescent females after these meals. Asquare-wave bolus may be less favourable with a less fatty pasta meal, giving a higherp-glucose increase. It was possible to achieve normoglycaemic post-prandial p-glucoselevels among adolescents with diabetes.

    Keywords
    type 1 diabetes mellitus, adolescents, insulin infusion systems, post-prandial glucose, bolus insulin
    National Category
    Nursing Endocrinology and Diabetes
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-122723 (URN)10.1002/pdi.1350 (DOI)
    Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2010-05-27Bibliographically approved
    2. Missed bolus doses: devastating for metabolic control in CSII-treated adolescents with type 1 diabetes
    Open this publication in new window or tab >>Missed bolus doses: devastating for metabolic control in CSII-treated adolescents with type 1 diabetes
    2009 (English)In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 10, no 2, p. 142-148Article in journal (Refereed) Published
    Abstract [en]

    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.

    Keywords
    adolescents, diabetes mellitus type 1, insulin infusion systems, SMBG
    National Category
    Endocrinology and Diabetes Pediatrics
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-122722 (URN)10.1111/j.1399-5448.2008.00462.x (DOI)000263704100009 ()19175898 (PubMedID)
    Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2017-12-12Bibliographically approved
    3. Clarifying responsibility for self-management in adolescents with diabetes using insulin pumps: a qualitative study
    Open this publication in new window or tab >>Clarifying responsibility for self-management in adolescents with diabetes using insulin pumps: a qualitative study
    2011 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 67, no 7, p. 1547-1557Article in journal (Refereed) Published
    Abstract [en]

    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 to 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 (5 males and 7 females, 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.

    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 clarifying of responsibility. The distribution of responsibility was clear among those who took most of their doses; they had high personal responsibility or shared it with their parents. The optimal transfer of responsibility is when it gradually moves from the parents to the adolescent. The findings revealed a need to clarify the responsibility for diabetes self-management in continuous negotiations between adolescents and parents to avoid missed bolus doses.

    Conclusion: Negotiations to clarify the responsibility for diabetes self-management must be a continuous process between adolescents and parents. Diabetes care teams may facilitate and encourage these negotiations.

    Keywords
    adolescent parenting, adolescents, diabetes mellitus type 1, grounded theory, insulin pump, interviews, nursing
    National Category
    Medical and Health Sciences
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-122727 (URN)10.1111/j.1365-2648.2010.05588.x (DOI)000292779400013 ()
    Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2017-12-12Bibliographically approved
    4. Reasons for missed meal-time insulin boluses, from the perspective of adolescents using insulin pumps – “lost focus”
    Open this publication in new window or tab >>Reasons for missed meal-time insulin boluses, from the perspective of adolescents using insulin pumps – “lost focus”
    2011 (English)In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 12, no 4, p. 402-409Article in journal (Refereed) Published
    Abstract [en]

    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.

    Keywords
    Diabetes mellitus type 1, Adolescents, Insulin infusion systems, Insulin omission, Qualitative research
    National Category
    Endocrinology and Diabetes Pediatrics
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-122726 (URN)10.1111/j.1399-5448.2010.00688.x (DOI)000290964000006 ()21129137 (PubMedID)
    Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2017-12-12Bibliographically approved
  • 10.
    Lindholm Olinder, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Fischier, Johan
    Department of Endocrinology, Metabolism and Diabetes, Uppsala University Hospital, Uppsala, Sweden.
    Fries, Jenny
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Elvingson, Veronika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Eriksson, Jan W
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Leksell, Janeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    A randomised wait-list controlled clinical trial of the effects of acceptance and commitment therapy in patients with type 1 diabetes: a study protocol2015In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 14, article id 61Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    In order to manage the acute and long-term effects of living with a chronic disease such as diabetes, both medical treatment and good psychosocial support are needed. In this study, we wish to examine whether a psychological group intervention targeting people with poorly controlled type 1 diabetes can be helpful in augmenting quality of life while also lowering participants' HbA1c level. The group intervention will consist of a brief treatment developed from a branch of cognitive behavioural therapy called acceptance and commitment therapy, which is part of the so-called third wave of cognitive behavioural therapy. Common for these third-wave therapies, the focus is less on the content and restructuring of thoughts and more on the function of behaviour. Here, we describe the protocol and plans for study enrolment.

    METHODS/DESIGN

    This on-going study is designed as a randomised wait-list controlled trial. Eighty patients aged 26-55 years and with an HbA1c level >70 mmol/mol at the time of enrolment will be included.

    DISCUSSION

    In this study, we will assess the effect of starting acceptance and commitment therapy group treatment for patients with type 1 diabetes and its effect on glycaemic control and well-being.

    TRIAL REGISTRATION

    Current controlled trials: ISRCTN17006837, registered 12(th) January 2015.

  • 11.
    Lindholm Olinder, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Kernell, Anna
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Continuous subcutaneous insulin infusion in young girls: a two-year follow-up study2007In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 4, no 1, p. 34-39Article in journal (Refereed)
    Abstract [en]

    Aims:

    To investigate why young girls decided to start continuous subcutaneousinsulin infusion (CSII) therapy, and to examine their opinions and concerns withregard to using an insulin pump. In addition, the girls were evaluated for HbA1cvalues, insulin requirements and body mass index standard deviation score (BMISDS) over a period of two years after starting CSII compared with a group of girlsusing multiple daily injections (MDI).

    Methods:

    Twelve girls (mean age 10.8 years) starting CSII were followed over a period of two years. Why the girls started CSII and whether they preferred CSII orMDI were investigated. Their statements about CSII were analysed and categorisedby two paediatric diabetes nurses. On four occasions HbA1c values, insulin require-ment and BMI SDS were collected and compared with those of a control group of 12 girls using MDI for the same period of time.

    Results:

    The girls started CSII due to a desire to test pump therapy, and their experiences of unstable blood glucose. They preferred CSII to MDI. The main positive statements were categorised as ‘quality-of-life benefits’. The main negativecategory was ‘the pump gets in the way’. In the CSII group, HbA1c decreased from8.5 (7.4–9.5) to 7.5 (6.9–8.1) (p<0.05) over two years, and the insulin requirementdecreased by 30%. In the control group these values were unchanged. There wereno changes in the BMI SDS mean values for either group.

    Conclusion:

    CSII was well accepted by the young girls, facilitated a decrease inHbA1c values, and did not result in weight gain.

  • 12.
    Lindholm Olinder, Anna
    et al.
    Sachs’ Children Hospital, Södersjukhuset, Stockholm, Sweden.
    Kernell, Anna
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Treatment with CSII in two infants with neonatal diabetes mellitus2006In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 7, no 5, p. 284-288Article in journal (Refereed)
    Abstract [en]

    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® 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.

  • 13.
    Lindholm Olinder, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Runefors, Jennie
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Kernell, Anna
    Karolinska Institutet.
    Post-prandial glucose levels following three methods of insulin bolusing: A study in adolescent girls and in comparison with girls without diabetes2009In: Practical diabetes international, ISSN 1357-8170, Vol. 26, no 3, p. 110-115Article in journal (Refereed)
    Abstract [en]

    The aims of this study were to assess whether one method of insulin bolusing wassuperior to two others in managing two pasta meals, and to compare the glucose levelswith those of females without diabetes.Fifteen continuous subcutaneous insulin infusion (CSII)-treated adolescent femalesand 10 adolescent females without diabetes consumed two pasta meals with different fatcontents. The plasma glucose (p-glucose) values were followed using capillarymeasurement and continuous glucose monitoring (CGMS) until three hours after themeal. The CSII-treated females received the same insulin dose at every occasion as:(1) normal bolus; (2) dual-wave bolus – 60% of the dose as normal bolus and 40% overone hour; and (3) square-wave bolus – a prolonged dose over one hour.No differences were found in p-glucose peak or AUC between the bolus methodsafter either of the meals. There was a difference in p-glucose increase at one time pointafter the less fat meal; after 60 minutes the increase was greater with a square-wavebolus (Friedman’s test p<0.02). Forty-eight percent of the measurements among thediabetes adolescents showed post-prandial p-glucose levels ≤10mmol/L. Femaleswithout diabetes had earlier and lower p-glucose peak and smaller AUC.It was concluded that there were no overall differences in p-glucose excursionsbetween different methods of bolusing for these adolescent females after these meals. Asquare-wave bolus may be less favourable with a less fatty pasta meal, giving a higherp-glucose increase. It was possible to achieve normoglycaemic post-prandial p-glucoselevels among adolescents with diabetes.

  • 14.
    Lindholm Olinder, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Ternulf Nyhlin, Kerstin
    University of Skövde, School of Life Sciences.
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Clarifying responsibility for self-management in adolescents with diabetes using insulin pumps: a qualitative study2011In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 67, no 7, p. 1547-1557Article in journal (Refereed)
    Abstract [en]

    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 to 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 (5 males and 7 females, 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.

    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 clarifying of responsibility. The distribution of responsibility was clear among those who took most of their doses; they had high personal responsibility or shared it with their parents. The optimal transfer of responsibility is when it gradually moves from the parents to the adolescent. The findings revealed a need to clarify the responsibility for diabetes self-management in continuous negotiations between adolescents and parents to avoid missed bolus doses.

    Conclusion: Negotiations to clarify the responsibility for diabetes self-management must be a continuous process between adolescents and parents. Diabetes care teams may facilitate and encourage these negotiations.

  • 15.
    Lindholm Olinder, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Ternulf Nyhlin, Kerstin
    University of Skövde, School of Life Sciences.
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Reasons for missed meal-time insulin boluses, from the perspective of adolescents using insulin pumps – “lost focus”2011In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 12, no 4, p. 402-409Article in journal (Refereed)
    Abstract [en]

    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.

  • 16.
    Olinder, Anna Lindholm
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Kernell, Anna
    Karolinska Institutet.
    Smide, Bibbi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Missed bolus doses: devastating for metabolic control in CSII-treated adolescents with type 1 diabetes2009In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 10, no 2, p. 142-148Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Rooth, Esther
    et al.
    Umeå Universitet.
    Olinder, Anna Lindholm
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism.
    Nurses’ experiences of giving care to children with autism spectrum disorder within somatic emergency care2016In: Scientific Times Journal of Paediatrics, Vol. 1, no 1, p. 1-11Article in journal (Refereed)
    Abstract [en]

    Aims: To describe nurses’ experiences of giving care to children with autism spectrum disorder in a paediatric emergency care unit and to explore how the nurses had obtained their knowledge of the subject.

    Background: Within somatic paediatric care, nurses frequently encounter children with autism spectrum disorder. Many parents of these children report a lack of knowledge about the diagnosis and difficulties in encounters with somatic care. According to Patricia Benner’s theory of learning, a skill is developed through education, tutoring and experience.

    Design: A qualitative interview study. 

    Method: Semi-structured interviews were held with ten nurses during the spring of 2015. Data was analysed by content analysis to find categories and codes corresponding to the study’s aims.

    Findings: The findings present information regarding: 1) knowledge and experience; 2) the context in which the child finds itself, as well as an unsafe working environment for the nurses; 3) how the treatment and care of the child, among other things, is affected by information given by the parents about the diagnosis, and how the nurses feel in difficult situations; 4) interaction with the children, the parents and colleagues. The findings in this study mainly show the complexity in encounters with children with autism spectrum disorder and their parents and that nurses require further education. The nurses also give a number of suggestions for improvements that well concur with the literature.

    Conclusion: To be able to care well for children with autism spectrum disorder, a combination of knowledge and experience is necessary.

  • 18. Saarinen, Tuula
    et al.
    Fernström, Lillemor
    Brorsson, Anna-Lena
    Karolinska Institutet.
    Lindholm Olinder, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Insulin pump therapy is perceived as liberating, but to many it can imply a sense of the diabetes made visible2014In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 11, no 2, p. 38-42Article in journal (Refereed)
    Abstract [en]

    This study describes how adults with type 1 diabetes experience the transition from multiple daily injections (MDI) to continuous subcutaneous insulin infusion (CSII or ‘insulin pump’). The study is based on interviews in focus groups, with 11 persons with type 1 diabetes who had had CSII for at least one year, which were analysed using qualitative content analysis. The analysis resulted in three categories: life and health; involvement of others; and technology dependence. Participants' experiences are summarised in the theme ‘CSII is perceived as liberating, but also implies a sense of the diabetes made visible’. The transition resulted in changed life and health with greater freedom and flexibility, particularly in meal situations. The participants felt that their blood glucose was easier to control. Those around them reacted with curiosity, but some participants felt compelled to tell others that they had diabetes since the pump could be seen or heard. The participants found that coping with CSII in daily life was easier and more comfortable than they had expected. However, having to constantly be prepared for technical failure was experienced as cumbersome. All participants indicated that they were satisfied with their treatment and recommended it to others. Transition to CSII may be experienced as liberating, but might also imply a sense of the diabetes made visible. The results can be used in clinical practice, when advising about CSII. Being aware of both positive and negative experiences with CSII can contribute to better care for those already being treated with CSII.

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