© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Pediatric Diabetes 2014: 15: 550–556 doi: 10.1111/pedi.12133 All rights reserved
Pediatric Diabetes
Original Article
Diabetes management in Swedish schools: a national survey of attitudes of parents, children, and diabetes teams ˚ Forsander G. Diabetes ¨ S¨arnblad S, Berg L, Detlofsson I, Jonsson A, management in Swedish schools: a national survey of attitudes of parents, children, and diabetes teams. Pediatric Diabetes 2014: 15: 550–556.
¨ S Sarnblad MD, PhDa,b , c L Berg RN , I Detlofsson ˚ Jonsson ¨ RDa , A RNd and G Forsander MD, PhDe
Background: Parents of children with type 1 diabetes often raise complaints about self-care support during school time. The aim of this study was to investigate attitudes to diabetes care in school reported by children with type 1 diabetes, their parents, and their diabetes teams. Methods: Children who had completed preschool class or at least one grade in the 9-yr compulsory school system were invited to participate. Data were collected using separate questionnaires for the children and their parents. In addition, the members of the diabetes team answered a separate questionnaire. All pediatric diabetes centers in Sweden were invited to participate in the study. Results: All Swedish children and adolescents with diabetes are treated at pediatric diabetes centers. Out of 44 eligible centers, 41 were able to participate. The questionnaires were completed by 317 children and adolescents and 323 parents. The mean age was 11.4 ± 2.7 yr and hemoglobin A1c (HbA1c) was 61.8 ± 12.4 mmol/mol (7.8 ± 1.1%). For 57% of the children, there was no member of staff at the school with principal responsibility to support diabetes self-care. A written action plan for hypoglycemia existed for 60% of the children. Twenty-one percent of the parents regularly gave less insulin than they calculated would be needed at breakfast because of fear of hypoglycemia during school time. Conclusions: Although Sweden has legislation underlining the specific need for diabetes care in school, this nationwide study demonstrates deficiencies in the support of self-care management.
¨ of Pediatrics, Orebro ¨ University Hospital, Orebro, Sweden; b School of Medicine Sciences, Orebro ¨ ¨ University, Orebro, Sweden; c ¨ Department of Medicine, Sodra ¨ ˚ Sweden; Alvsborg Hospital, Boras, d Swedish Diabetes Association, Stockholm, Sweden; and e Department of Pediatrics, The Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden a Department
Key words: attitudes – children – legislation – school – type 1 diabetes Corresponding author: Stefan ¨ Sarnblad, MD, PhD, Department of Pediatrics, ¨ Orebro University Hospital, ¨ Orebro 701 85, Sweden. Tel: (46) 19 602 10 00, (46) 70 954 32 42; fax: +(46) 19 18 79 15; e-mail: [email protected] Submitted 6 September 2013. Accepted for publication 22 January 2014
Type 1 diabetes is one of the most common chronic diseases in children in developed countries. The incidence of diabetes is increasing (1) and has doubled during the last 20 yr, from 21.6 of 100 000 children in 1978–1980 to 43.9 of 100 000 in 2005–2007 (2). Today, there is at least one child with type 1 diabetes in almost every school in Sweden. Optimal glycemic control is essential to prevent later diabetes-related complications (3, 4). As children
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in Sweden spend approximately 30 h/wk in school settings, including time at after-school centers, it is of utmost importance that diabetes care functions well during school time. Sweden has been proposed as a good example of diabetes management in school (5) because of its regulation of support for chronic disease selfmanagement in school. However, pediatric diabetes teams often receive information from patients and
Diabetes management in Swedish schools their parents about insufficient support in Swedish schools. Previous reports about diabetes care in school in Sweden are limited in number and based on small samples (6). The aim of this study was to investigate attitudes among children and adolescents with diabetes, their parents and their diabetes team concerning diabetes care in school.
and 10 mmol/mol is approximately 0.9% (8). The reference level for a healthy person is 27–42 mmol/mol (9). In addition the specialist multidisciplinary diabetes care team staffs at each clinic were invited to answer a short questionnaire about their overall opinions on the support of self-care management in schools in their catchment area.
Methods Study population All pediatric diabetes centers in Sweden were invited to participate in the study. Children who were attending compulsory school during 2007–2008 were asked to participate in this study. To secure equal contribution from all clinics, each diabetes center was asked to consecutively include a given number of patients in the appropriate age group. If one patient refused to participate, the next patient was asked, until the required number of participants was achieved. The number of patients that each center should recruit was calculated as 5% of the total population of children with type 1 diabetes (0–18 yr old) at that center. This gave a total eligible population in Sweden of 374 children. The child and the parent were given verbal and written information about the study at the regular outpatient visit, and the parent gave written informed consent. The study was approved by the Regional Ethics Committee of Uppsala, Sweden.
Data collection Those families who agreed to participate completed two questionnaires after the visit. The child and parent completed separate questionnaires without communicating their opinions to each other. If the child needed help during the procedure, a diabetes nurse read and explained the questions. The data collection was performed during August and September 2008, at the beginning of the fall semester. To ensure anonymity for the families, all questionnaires were coded. The parents reported in the questionnaire the value of hemoglobin A1c (HbA1c) at the preceding outpatient clinical visit. The data on HbA1c were derived from capillary blood samples measured with the Bayer/Siemens DCA-2000 analyzer (Erlangen, Germany) or using local laboratory methods (high-performance liquid chromatography) (7). All laboratory methods used in Sweden are standardized through External Quality Assurance in Laboratory Medicine in Sweden (EQUALIS). HbA1c values will be presented here in IFCC units (mmol/mol), followed by NGSP units (%) within parentheses; 58 mmol/mol (IFCC) corresponds to 7.5% (NGSP), Pediatric Diabetes 2014: 15: 550–556
Description of the questionnaire Two pediatric diabetologists, a pediatric diabetes nurse, a pediatric dietician, and a representative from the Swedish Diabetes Association designed the questionnaires. The questionnaires were evaluated in a smaller pilot study at the Department of Pediatrics, ¨ Orebro University Hospital, Sweden. In addition to demographic information about the child, the parent, and the family, the parental questionnaire and that for the children assessed six major topics: self-care management, support in the case of hypoglycemic events, school restaurant resources, school staff competence, school staff resources, and communication between the school and the parents. The parental questionnaire consisted of 52 questions and the questionnaire for children and adolescents contained 22 questions. Some questions were dichotomous (yes/no answers) but most used ordinal-scale responses. The diabetes care team questionnaire consisted of 10 ordinal-scale questions assessing communication between the clinics and schools in the catchment area and perceptions of the diabetes-related support provided in school for children and adolescents with type 1 diabetes. The diabetes care teams were asked to answer the questionnaire collectively.
Statistics Mean and standard deviation for continuous variables and percentage for ordinal variables were used to describe clinical characteristics. Groups were compared using the chi-squared test for ordinal data and t-tests for continuous data. When the chi-squared test was used, the answers to the questions were aggregated into a 2 × 2 table. How the aggregation was performed is described separately for each analysis. spss for Windows (version 20.0.0; SPSS Inc., Chicago, IL, USA) was used for all analyses.
Results Clinical characteristics In 2008, Sweden had a total population of 4100 patients aged 6–15 yr with type 1 diabetes, with
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S¨arnblad et al. a mean HbA1c of 62.8 ± 12.3 mmol/mol (personal communication: SWEDIABKIDS, U Samuelsson). Of 44 eligible centers, 41 were able to participate. The participating centers were responsible for the care of 97% (7490 patients) of the total pediatric diabetic population in Sweden. Of these, 317 children and adolescents and 323 parents answered the questionnaire, out of 374 eligible subjects. In three cases, the questionnaire was completed only by the child and in nine cases only by a parent. In 314 cases, both the child and one of the parents answered. In 65% of the cases, it was the mother who answered the parental questionnaire. In total, answers from 326 families with a child or adolescent with diabetes were received. The mean age of the children in the participating families was 11.4 ± 2.7 yr, with a mean HbA1c of 61.8 ± 12.4 mmol/mol (7.8 ± 1.1%). Twelve percent of the children had a parent or sibling with type 1 diabetes. A majority of the children were attending municipal school (91%), and 58% of the children answered that there was more than one pupil with diabetes in their school. Half of the children (51%) were attending schools with more than 300 pupils, whereas only 8% attended smaller schools (under 100 pupils). Clinical characteristics of the included children are described in Tables 1.
Self-care management Continuous subcutaneous insulin infusion was used by 39% of the participating children. Nearly all of the participating children were able to administer the insulin by themselves (reported by 94% of the children and 87% of the parents) and to check plasma glucose values (reported by 93% of children and 86% of parents). The insulin was taken in the classroom or in the school canteen by 89% of the children. Among the parents, 41% answered that they were involved daily by telephone in the interpretation of plasma glucose values and decisions about the appropriate insulin dose. Seven percent of the parents answered that the insulin regimen had been changed because of insufficient support to the child concerning insulin injections. Because of fear of hypoglycemia during school time, 18% of the children and 21% of the parents answered that they took less insulin than they had estimated to be necessary at least once weekly (Table 2). There was no significant difference in HbA1c between those children whose parents reported under-treatment and those who did not. The specialist multidisciplinary diabetes care teams stated that the support varied between different schools. In general, the support was regarded as best during grades 1–3, where the support was satisfactory
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or good, but declined for older children. In grades 7–9, 18% of the teams answered that the support of self-care management was unsatisfactory.
Support in the case of hypoglycemic episodes Most of the children had never experienced a severe hypoglycemia during school time (reported by 91% of children and 93% of parents). A written action plan for hypoglycemia existed only for 60% of the children, more often for those in grades 1–3 in comparison to grades 7–9 (81 vs. 38%, p < 0.01; Table 2). HbA1c was significantly lower, 60.7 ± 12.1 mmol/ mol (7.7 ± 1.1%) vs. 65.6 ± 13.1 mmol/mol (8.1 ± 1.2%) (p < 0.01), among children reporting non-severe hypoglycemic events one to four times a week during the school day compared with those who never experienced hypoglycemia during school time.
School restaurant resources All children and adolescents in Sweden are served a free cooked lunch in school. Overall, the parents reported the dietary resources to be satisfactory. Two thirds of the children could have an alternative dish if needed. A snack was provided in the afternoon in 83% of the cases. However, there was a discrepancy between the answers by the children and the parents concerning food provided during excursions: whereas 35% of the parents reported that they were worried about the food during these occasions, only 11% of the children reported the same worries (p < 0.01).
Perceptions of school staff competence Forty-seven percent of the parents stated that they were worried during school time that their children did not get support in their self-care management. The age of the child was no different among parents reporting significant worries compared with parents without worries (11.35 vs. 11.37 yr, respectively; Table 2). Seventeen percent of the parents reported that they had, as a consequence, occasionally kept their child at home; again, age was not a factor for the children kept at home. Fifty-six percent of the parents reported that they were satisfied with the diabetes self-care support in school. The school nurse had an unclear responsibility indicated by the fact that 60% of the parents were unsure of the role for the school nurse. Only 1.5% of the parents had experienced discriminatory behavior from school staff.
School staff resources The provision of extra school personnel in addition to the child’s teacher was highest during grades 1–3 (42%). Pediatric Diabetes 2014: 15: 550–556
Diabetes management in Swedish schools Table 1. Clinical characteristics of children and adolescents participating in the study
Number Age (mean ± SD) Gender (% female) HbA1c (mean ± SD) IFCC (mmol/mol) NGSP (%) Duration of diabetes (yr) (mean ± SD) Coeliac disease (%) CSII (%) Other chronic disease Municipal school
Grades 1–3
Grades 4–6
Grades 7–9
Total
89 8.0 ± 1.1 43%
113 11.0 ± 1.1 59%
124 14.1 ± 1.0 52%
326 11.4 ± 2.7 52%
57.8 ± 8.9 7.4 ± 0.8 3.5 ± 2.1 8% 28% 7% 94%
62.5 ± 12.9 7.8 ± 1.2 4.3 ± 2.8 7% 42% 4% 93%
64.0 ± 13.4 8.0 ± 1.2 6.4 ± 3.6 14% 44% 7% 86%
61.8 ± 12.4 7.8 ± 1.1 4.9 ± 3.2 10.0% 39% 6% 91%
CSII, continuous subcutaneous insulin infusion; HbA1c, hemoglobin A1c; SD, standard deviation. Data are divided into three groups according to school settings in Sweden. Other chronic disease indicates that the child has impaired functioning in school because of a chronic disease other than diabetes. Table 2. Some selected questions and answers stratified by age group Grades 1–3
Grades 4–6
Grades 7–9
Total
Does your child have access to one or more members of staff with principal responsibility to support diabetes self-care during school time? (N = 305) 1. Yes, one 40 (47%) 33 (32%) 19 (16%) 92 (30%) 2. Yes, more than one 22 (26%) 7 (7%) 10 (9%) 39 (13%) 3. No 23 (27%)**, †, 63 (61%)*‡ 88 (75%) 174 (57%) Does the school have a written action plan for treatment of hypoglycemia? (N = 312) 74 (67%)**, ‡ 45 (38%) 1. Yes 67 (81%)*, † 2. No 16 (19%) 36 (33%) 74 (62%)
186 (60%) 126 (40%)
Are there any additional staff resources in school because of your child’s diabetes? (N = 296) 1. Yes 35 (41%)*, † 13 (13%)**, ‡ 1 (1%) 2. No 50 (59%) 89 (87%) 108 (99%)
49 (17%) 247 (83%)
How often do you reduce your child’s dosage of insulin because of fear of hypoglycemia in school? (N = 323) 1. Every day 3 9 2 14 21% 31%†(NS) 11% 25%**, ‡ 2. At least once a week 24 19 12 55 3. At least once a month 13 (15%) 26 (23%) 31 (25%) 70 (22%) 4. Never 47 (54%) 59 (52%) 78 (63%) 184 (57%) Are you worried during school time that your child doesn’t get good self-care support? (N = 320) 1. Yes, every school day 10 (12%) 19 (17%) 15 (12%) 2. Yes, some time every week 26 (30%) 42 (37%) 37 (30%) 3. No 50 (58%)†(NS) 52 (46%)‡(NS) 69 (58%)
44 (14%) 105 (33%) 171 (53%)
How often during school time do you have telephone contact with school staff or your child concerning diabetes treatment? (N = 315) 1. Several times a day 9 10 3 N = 41 N = 36 N = 12 2. Once daily 4 8 4 **, 48%†(NS) 10% 33% ‡ 3. A couple of times per week 28 18 5 4. A few times a month 33 (38%) 37 (34%) 32 (26%) 5. Never 12 (14%) 35 (33%) 77 (64%)
22 N = 89 16 28% 51 102 (32%) 124 (39%)
NS, non-significant. *p < 0.05, ** p < 0.01. †Grade 1–2 vs. grade 4–6. ‡Grade 4–6 vs. grade 7–9.
Six of the children who received extra resources had additional functional impairments besides diabetes. There was no difference between small and large schools in the availability of extra resources. Fifty-seven percent of the children did not have any school personnel with the principal responsibility to support their diabetes self-care during school time. There was a significant difference according to age Pediatric Diabetes 2014: 15: 550–556
of the child. In grades 1–3, 27% of the children were without this support, compared with 75% of the adolescents in grade 7–9 (p < 0.01; Table 2).
Communication between school and parents Telephone contact with their child or school staff about the diabetes treatment at least once weekly was
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S¨arnblad et al. reported by 28% of the parents, and 20% of the children reported telephone contact with their parents at least once weekly. The communication between school and the parents took several forms, including contact by telephone, visits to the school by parents, contact with staff at the start or end of the day, or by keeping a logbook. However, 18% of the parents reported no regular contact with school staff.
Associations to self-care management in school Metabolic control. On a group level, there was no difference in metabolic control for those who had a member of staff with principal responsibility to support diabetes self-care, extra personnel resources, or a written action plan for hypoglycemia compared with those who lacked this support. Parental perceptions of care in school. Parents were significantly more satisfied with self-care management in school if there was an adult with principal responsibility to support diabetes self-care (p < 0.001) or extra personnel resources besides the child’s teacher (p < 0.01). This effect was observed in all age groups. There was a tendency toward lower levels of worries among parents whose child had an adult with principal responsibility to support diabetes self-care in school (p = 0.075). Subgroup analysis showed that there was a significant association only in grades 1–3 (p < 0.001) A written action plan for treatment of hypoglycemia was associated with higher levels of satisfaction with school support among parents (p < 0.001). Discussion This national survey evaluated the situation at school of children and adolescents with type 1 diabetes in Sweden, taking into account the perceptions of parents, schoolchildren, and the professional diabetes teams. We found significant deficiencies in the support of selfcare management, demonstrated by the fact that half of all children and adolescents lacked a member of staff with principal responsibility to support diabetes selfcare during school time and 40% lacked a written action plan for the treatment of hypoglycemia. Furthermore, 21% of the parents regularly gave less insulin than they estimated to be needed at breakfast because of fear of hypoglycemia during school time. Sweden has been proposed as a good example of diabetes management in school (5) because of the regulation to ensure support in self-management of chronic disease in Swedish schools. The regulation has been made even more rigorous since this study was conducted (10, 11). Legislation by the Swedish National Agency for Education states that the responsibility for supervision is transferred from the
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parent to the municipality at school or in schoolage childcare (11). Accordingly, the responsibility for support in self-care of children with diabetes is transferred to the school staff. The need for support has to be documented and updated in an individual action plan, in a collaboration between the child, parents, diabetes care team, and the school (10). In contrast to many other countries, school nurses in Swedish schools have responsibility for preventive health care but are not involved in the supervision of self-care in children with diabetes. Instead, the child’s teacher, or another school staff member, has the responsibility to support the child in place of the parents. The school principal has the responsibility to arrange appropriate support. The specialist multidisciplinary diabetes care team provides appropriate training for the school personnel when a child is diagnosed. When a child is discharged from the pediatric department a meeting is arranged between the family, the school personnel, and the diabetes team, where the need for support is discussed. The regulation and the established procedures for collaboration between diabetes care team, parents, and school provide a solid foundation for adequate self-care for children with type 1 diabetes. Diabetes care in schools varies greatly between different countries in terms of legislation, staff supply, and distribution of responsibility between parents and schools (5). This makes comparison between studies within different school systems difficult. Forty-four percent of the parents in our study reported dissatisfaction with the care of their child at school. This can be compared with data from two US studies, in which 75% (12) and 57% (13) of the parents were dissatisfied with the diabetes care provided in school. The Danish Diabetes Association reported in 2008, from an unpublished study of 512 families with a child aged 6–15 yr, that 83% of the children had no member of staff with principal responsibility to support diabetes self-care in school, and 37% of the parents adjusted insulin dosages to avoid hypoglycemia during school time (14). From this perspective, it seems that the support in Swedish schools is of better quality, possibly because of the legislation concerning support in self-care. In our study, 28% of the parents reported telephone contact with their child or school staff about the diabetes treatment at least once weekly. In comparison, 50% of the parents in Denmark had daily contact by telephone with their child, and 20% of the parents in Italy were fully responsible for their child’s insulin administration at school (15). The fact that many parents can never transfer the responsibility to school staff is important, as burn-out symptoms are common among parents of children with type 1 diabetes and are often associated with the feeling that the disease affects their everyday life (16). Pediatric Diabetes 2014: 15: 550–556
Diabetes management in Swedish schools Previous studies have shown a relationship between parents’ fear of hypoglycemia and their beliefs about the child’s ability to handle hypoglycemia events (17). As 44% of the parents in this study were dissatisfied with the support in school and as only 60% of the schools had a written action plan for hypoglycemia, the parents’ strategies to avoid hypoglycemias during school time are understandable. We found that one fifth of the parents gave suboptimal insulin dosages at least once weekly to avoid hypoglycemia in school. Target-setting has been shown to influence glycemic control (18). Even if we did not find any correlation with metabolic control on a group level, this strategy could be of importance in the longer perspective. It is furthermore possible that periods of hyperglycemia following suboptimal insulin treatment affect the child’s learning capacity (19). This may be one explanation behind the lower degree of school achievements shown in young people with type 1 diabetes (20, 21). The need for support in self-care is dependent on the age and developmental level of the child. Most adolescents have adequate knowledge about diabetes self-care to take independent responsibility to their self-care. However, school personal needs to be engaged in the self-care during school time to support in structural issues for example during physical education and lunch-meal. In this study we found that young children receive adequate support for selfcare management in schools, but the support is highly variable between different schools. We found that the support from school was highest during grades 1–3 and thereafter decreased significantly. In grades 7–9 very few adolescents had a member of school staff responsible for supporting them in self-care. This is comparable with the US studies reporting that only 9% of high school students had an extra support (22). In contrast to this, we found that parental worries about insufficient support in diabetes self-care were independent of age. Quality of life of the child is reported to decrease when children with type 1 diabetes enters adolescence simultaneously as parental burden of disease is decreased. (23). Adolescents’ increasing independence from their parents is sometimes at the cost of decreasing quality of life. With this in mind, it is important that schools continue to provide self-care support, as many adolescents are not ready for the increased responsibility and independence, especially if neurocognitive disorders coexist. One shortcoming of this study is that we have no data on the families that did not answer the questionnaire. However, we believe that the results from the survey are highly representative for the national cohort, as 41 of 44 diabetes clinics in Sweden participated in this study, and the HbA1c and clinical characteristics were similar to national data. Furthermore, according Pediatric Diabetes 2014: 15: 550–556
to 2007–2008 statistics from The Swedish National Agency for Education, 52% of the students attended a school with over 300 students and 87% of the schools in Sweden were municipal (4185 of 4826 schools). These data are highly comparable with our results. Wagner et al. (24) found that training of school staff in diabetes management improved glycemic control of the schoolchildren with diabetes. Thus, one possible improvement of self-care management in the school setting would be to make a diabetes nurse available as a resource. This specialized nurse should provide education and support to school staff, and work to improve communication between the parents and the school (25). However, research is needed to determine which support structure that would give the best results for children and adolescents with diabetes and their parents. In conclusion, this nationwide survey shows that even if Sweden by law has secured the child’s right to support in diabetes self-care in school, diabetes management in Swedish schools still needs to be improved. The effect of national regulations needs to be closely monitored in order to secure equal support for all children with type 1 diabetes.
Acknowledgements This study was supported by grants from the Diabetes ¨ Association in Orebro County, Sweden, and an unrestricted grant from a consortium of pharmaceutical companies (Sanofi-Aventis, Medtronic, GlaxoSmithKline, Novo Nordisk, AstraZeneca, Novartis, MSD, Lilly, Roche). We would like to thank the pediatric diabetes teams that contributed to this study, as well as the children and their parents who participated in it.
References 1. Patterson CC, Dahlquist GG, Gyurus E, Green A, Soltesz G. Incidence trends for childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005–20: a multicentre prospective registration study. Lancet 2009: 373: 2027–2033. 2. Berhan Y, Waernbaum I, Lind T, Mollsten A, Dahlquist G. Thirty years of prospective nationwide incidence of childhood type 1 diabetes: the accelerating increase by time tends to level off in Sweden. Diabetes 2011: 60: 577–581. 3. Nordwall M, Arnqvist HJ, Bojestig M, Ludvigsson J. Good glycemic control remains crucial in prevention of late diabetic complications–the Linkoping Diabetes Complications Study. Pediatr Diabetes 2009: 10: 168–176. 4. Diabetes Control and Complications Trial Research Group. Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: Diabetes Control and Complications Trial. J Pediatr 1994: 125: 177–188.
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S¨arnblad et al. 5. Lange K, Jackson C, Deeb L. Diabetes care in schools–the disturbing facts. Pediatr Diabetes 2009: 10 (Suppl. 13): 28–36. 6. Thernlund G, Fredin K, Hagglof B et al. Responsibility of schools for children with type 1 diabetes. Lakartidningen 1999: 96: 5248–5250. 7. Jeppsson JO, Jerntorp P, Sundkvist G, Englund H, Nylund V. Measurement of hemoglobin A1c by a new liquid-chromatographic assay: methodology, clinical utility, and relation to glucose tolerance evaluated. Clin Chem 1986: 32: 1867–1872. 8. Hoelzel W, Weykamp C, Jeppsson JO et al. IFCC reference system for measurement of hemoglobin A1c in human blood and the national standardization schemes in the United States, Japan, and Sweden: a methodcomparison study. Clin Chem 2004: 50: 166–174. 9. Back SE, Nilsson JE, Fex G et al. Towards common reference intervals in clinical chemistry. An attempt at harmonization between three hospital laboratories in Skane, Sweden. Clin Chem Lab Med 1999: 37: 573–592. ¨ ¨ 10. Socialstyrelsens foreskrifter om bedomningen av om en ¨ h¨also- och sjukv˚ards˚atg¨ard kan utforas som egenv˚ard. (SOSFS 2009:6). Stockholm: National board of Health and Welfare. 11. Skollagen. (SFS 2010:800). Stockholm: The Swedish National Agency for Education. 12. Lewis DW, Powers PA, Goodenough MF, Poth MA. Inadequacy of in-school support for diabetic children. Diabetes Technol Ther 2003: 5: 45–56. 13. Jacquez F, Stout S, Alvarez-Salvat R et al. Parent perspectives of diabetes management in schools. Diabetes Educ 2008: 34: 996–1003. 14. Skoleliv. Diabetes. Danish Diabetes Association 2008 (available from http://www.diabetes.dk). 15. Pinelli L, Zaffani S, Cappa M et al. The ALBA project: an evaluation of needs, management, fears of Italian young patients with type 1 diabetes in a school setting and an evaluation of parents’ and teachers’ perceptions. Pediatr Diabetes 2011: 12: 485–493.
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16. Lindstrom C, Aman J, Norberg AL. Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with type 1 diabetes mellitus. Acta Paediatr 2011: 100: 1011–1017. 17. Gonder-Frederick LA, Fisher CD, Ritterband LM et al. Predictors of fear of hypoglycemia in adolescents with type 1 diabetes and their parents. Pediatr Diabetes 2006: 7: 215–222. 18. Swift PG, Skinner TC, de Beaufort CE et al. Target setting in intensive insulin management is associated with metabolic control: the Hvidoere childhood diabetes study group centre differences study 2005. Pediatr Diabetes 2010: 11: 271–278. 19. Perantie DC, Lim A, Wu J et al. Effects of prior hypoglycemia and hyperglycemia on cognition in children with type 1 diabetes mellitus. Pediatr Diabetes 2008: 9: 87–95. 20. Parent KB, Wodrich DL, Hasan KS. Type 1 diabetes mellitus and school: a comparison of patients and healthy siblings. Pediatr Diabetes 2009: 10: 554–562. 21. Persson S, Dahlquist G, Gerdtham UG, Steen Carlsson K. Impact of childhood-onset type 1 diabetes on schooling: a population-based register study. Diabetologia 2013: 56: 1254–1262. 22. Hellems MA, Clarke WL. Safe at school: a Virginia experience. Diabetes Care 2007: 30: 1396–1398. 23. Mortensen HB. Findings from the Hvidore Study Group on Childhood Diabetes: metabolic control and quality of life. Horm Res 2002: 57: 117–120. 24. Wagner J, Heapy A, James A, Abbott G. Brief report: glycemic control, quality of life, and school experiences among students with diabetes. J Pediatr Psychol 2006: 31: 764–769. 25. Bobo N, Kaup T, McCarty P, Carlson JP. Diabetes management at school: application of the healthy learner model. J Sch Nurs 2011: 27: 171–184.
Pediatric Diabetes 2014: 15: 550–556
Pediatric Diabetes 2014: 15: 550–556 doi: 10.1111/pedi.12133 All rights reserved
Pediatric Diabetes
Original Article
Diabetes management in Swedish schools: a national survey of attitudes of parents, children, and diabetes teams ˚ Forsander G. Diabetes ¨ S¨arnblad S, Berg L, Detlofsson I, Jonsson A, management in Swedish schools: a national survey of attitudes of parents, children, and diabetes teams. Pediatric Diabetes 2014: 15: 550–556.
¨ S Sarnblad MD, PhDa,b , c L Berg RN , I Detlofsson ˚ Jonsson ¨ RDa , A RNd and G Forsander MD, PhDe
Background: Parents of children with type 1 diabetes often raise complaints about self-care support during school time. The aim of this study was to investigate attitudes to diabetes care in school reported by children with type 1 diabetes, their parents, and their diabetes teams. Methods: Children who had completed preschool class or at least one grade in the 9-yr compulsory school system were invited to participate. Data were collected using separate questionnaires for the children and their parents. In addition, the members of the diabetes team answered a separate questionnaire. All pediatric diabetes centers in Sweden were invited to participate in the study. Results: All Swedish children and adolescents with diabetes are treated at pediatric diabetes centers. Out of 44 eligible centers, 41 were able to participate. The questionnaires were completed by 317 children and adolescents and 323 parents. The mean age was 11.4 ± 2.7 yr and hemoglobin A1c (HbA1c) was 61.8 ± 12.4 mmol/mol (7.8 ± 1.1%). For 57% of the children, there was no member of staff at the school with principal responsibility to support diabetes self-care. A written action plan for hypoglycemia existed for 60% of the children. Twenty-one percent of the parents regularly gave less insulin than they calculated would be needed at breakfast because of fear of hypoglycemia during school time. Conclusions: Although Sweden has legislation underlining the specific need for diabetes care in school, this nationwide study demonstrates deficiencies in the support of self-care management.
¨ of Pediatrics, Orebro ¨ University Hospital, Orebro, Sweden; b School of Medicine Sciences, Orebro ¨ ¨ University, Orebro, Sweden; c ¨ Department of Medicine, Sodra ¨ ˚ Sweden; Alvsborg Hospital, Boras, d Swedish Diabetes Association, Stockholm, Sweden; and e Department of Pediatrics, The Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden a Department
Key words: attitudes – children – legislation – school – type 1 diabetes Corresponding author: Stefan ¨ Sarnblad, MD, PhD, Department of Pediatrics, ¨ Orebro University Hospital, ¨ Orebro 701 85, Sweden. Tel: (46) 19 602 10 00, (46) 70 954 32 42; fax: +(46) 19 18 79 15; e-mail: [email protected] Submitted 6 September 2013. Accepted for publication 22 January 2014
Type 1 diabetes is one of the most common chronic diseases in children in developed countries. The incidence of diabetes is increasing (1) and has doubled during the last 20 yr, from 21.6 of 100 000 children in 1978–1980 to 43.9 of 100 000 in 2005–2007 (2). Today, there is at least one child with type 1 diabetes in almost every school in Sweden. Optimal glycemic control is essential to prevent later diabetes-related complications (3, 4). As children
550
in Sweden spend approximately 30 h/wk in school settings, including time at after-school centers, it is of utmost importance that diabetes care functions well during school time. Sweden has been proposed as a good example of diabetes management in school (5) because of its regulation of support for chronic disease selfmanagement in school. However, pediatric diabetes teams often receive information from patients and
Diabetes management in Swedish schools their parents about insufficient support in Swedish schools. Previous reports about diabetes care in school in Sweden are limited in number and based on small samples (6). The aim of this study was to investigate attitudes among children and adolescents with diabetes, their parents and their diabetes team concerning diabetes care in school.
and 10 mmol/mol is approximately 0.9% (8). The reference level for a healthy person is 27–42 mmol/mol (9). In addition the specialist multidisciplinary diabetes care team staffs at each clinic were invited to answer a short questionnaire about their overall opinions on the support of self-care management in schools in their catchment area.
Methods Study population All pediatric diabetes centers in Sweden were invited to participate in the study. Children who were attending compulsory school during 2007–2008 were asked to participate in this study. To secure equal contribution from all clinics, each diabetes center was asked to consecutively include a given number of patients in the appropriate age group. If one patient refused to participate, the next patient was asked, until the required number of participants was achieved. The number of patients that each center should recruit was calculated as 5% of the total population of children with type 1 diabetes (0–18 yr old) at that center. This gave a total eligible population in Sweden of 374 children. The child and the parent were given verbal and written information about the study at the regular outpatient visit, and the parent gave written informed consent. The study was approved by the Regional Ethics Committee of Uppsala, Sweden.
Data collection Those families who agreed to participate completed two questionnaires after the visit. The child and parent completed separate questionnaires without communicating their opinions to each other. If the child needed help during the procedure, a diabetes nurse read and explained the questions. The data collection was performed during August and September 2008, at the beginning of the fall semester. To ensure anonymity for the families, all questionnaires were coded. The parents reported in the questionnaire the value of hemoglobin A1c (HbA1c) at the preceding outpatient clinical visit. The data on HbA1c were derived from capillary blood samples measured with the Bayer/Siemens DCA-2000 analyzer (Erlangen, Germany) or using local laboratory methods (high-performance liquid chromatography) (7). All laboratory methods used in Sweden are standardized through External Quality Assurance in Laboratory Medicine in Sweden (EQUALIS). HbA1c values will be presented here in IFCC units (mmol/mol), followed by NGSP units (%) within parentheses; 58 mmol/mol (IFCC) corresponds to 7.5% (NGSP), Pediatric Diabetes 2014: 15: 550–556
Description of the questionnaire Two pediatric diabetologists, a pediatric diabetes nurse, a pediatric dietician, and a representative from the Swedish Diabetes Association designed the questionnaires. The questionnaires were evaluated in a smaller pilot study at the Department of Pediatrics, ¨ Orebro University Hospital, Sweden. In addition to demographic information about the child, the parent, and the family, the parental questionnaire and that for the children assessed six major topics: self-care management, support in the case of hypoglycemic events, school restaurant resources, school staff competence, school staff resources, and communication between the school and the parents. The parental questionnaire consisted of 52 questions and the questionnaire for children and adolescents contained 22 questions. Some questions were dichotomous (yes/no answers) but most used ordinal-scale responses. The diabetes care team questionnaire consisted of 10 ordinal-scale questions assessing communication between the clinics and schools in the catchment area and perceptions of the diabetes-related support provided in school for children and adolescents with type 1 diabetes. The diabetes care teams were asked to answer the questionnaire collectively.
Statistics Mean and standard deviation for continuous variables and percentage for ordinal variables were used to describe clinical characteristics. Groups were compared using the chi-squared test for ordinal data and t-tests for continuous data. When the chi-squared test was used, the answers to the questions were aggregated into a 2 × 2 table. How the aggregation was performed is described separately for each analysis. spss for Windows (version 20.0.0; SPSS Inc., Chicago, IL, USA) was used for all analyses.
Results Clinical characteristics In 2008, Sweden had a total population of 4100 patients aged 6–15 yr with type 1 diabetes, with
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S¨arnblad et al. a mean HbA1c of 62.8 ± 12.3 mmol/mol (personal communication: SWEDIABKIDS, U Samuelsson). Of 44 eligible centers, 41 were able to participate. The participating centers were responsible for the care of 97% (7490 patients) of the total pediatric diabetic population in Sweden. Of these, 317 children and adolescents and 323 parents answered the questionnaire, out of 374 eligible subjects. In three cases, the questionnaire was completed only by the child and in nine cases only by a parent. In 314 cases, both the child and one of the parents answered. In 65% of the cases, it was the mother who answered the parental questionnaire. In total, answers from 326 families with a child or adolescent with diabetes were received. The mean age of the children in the participating families was 11.4 ± 2.7 yr, with a mean HbA1c of 61.8 ± 12.4 mmol/mol (7.8 ± 1.1%). Twelve percent of the children had a parent or sibling with type 1 diabetes. A majority of the children were attending municipal school (91%), and 58% of the children answered that there was more than one pupil with diabetes in their school. Half of the children (51%) were attending schools with more than 300 pupils, whereas only 8% attended smaller schools (under 100 pupils). Clinical characteristics of the included children are described in Tables 1.
Self-care management Continuous subcutaneous insulin infusion was used by 39% of the participating children. Nearly all of the participating children were able to administer the insulin by themselves (reported by 94% of the children and 87% of the parents) and to check plasma glucose values (reported by 93% of children and 86% of parents). The insulin was taken in the classroom or in the school canteen by 89% of the children. Among the parents, 41% answered that they were involved daily by telephone in the interpretation of plasma glucose values and decisions about the appropriate insulin dose. Seven percent of the parents answered that the insulin regimen had been changed because of insufficient support to the child concerning insulin injections. Because of fear of hypoglycemia during school time, 18% of the children and 21% of the parents answered that they took less insulin than they had estimated to be necessary at least once weekly (Table 2). There was no significant difference in HbA1c between those children whose parents reported under-treatment and those who did not. The specialist multidisciplinary diabetes care teams stated that the support varied between different schools. In general, the support was regarded as best during grades 1–3, where the support was satisfactory
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or good, but declined for older children. In grades 7–9, 18% of the teams answered that the support of self-care management was unsatisfactory.
Support in the case of hypoglycemic episodes Most of the children had never experienced a severe hypoglycemia during school time (reported by 91% of children and 93% of parents). A written action plan for hypoglycemia existed only for 60% of the children, more often for those in grades 1–3 in comparison to grades 7–9 (81 vs. 38%, p < 0.01; Table 2). HbA1c was significantly lower, 60.7 ± 12.1 mmol/ mol (7.7 ± 1.1%) vs. 65.6 ± 13.1 mmol/mol (8.1 ± 1.2%) (p < 0.01), among children reporting non-severe hypoglycemic events one to four times a week during the school day compared with those who never experienced hypoglycemia during school time.
School restaurant resources All children and adolescents in Sweden are served a free cooked lunch in school. Overall, the parents reported the dietary resources to be satisfactory. Two thirds of the children could have an alternative dish if needed. A snack was provided in the afternoon in 83% of the cases. However, there was a discrepancy between the answers by the children and the parents concerning food provided during excursions: whereas 35% of the parents reported that they were worried about the food during these occasions, only 11% of the children reported the same worries (p < 0.01).
Perceptions of school staff competence Forty-seven percent of the parents stated that they were worried during school time that their children did not get support in their self-care management. The age of the child was no different among parents reporting significant worries compared with parents without worries (11.35 vs. 11.37 yr, respectively; Table 2). Seventeen percent of the parents reported that they had, as a consequence, occasionally kept their child at home; again, age was not a factor for the children kept at home. Fifty-six percent of the parents reported that they were satisfied with the diabetes self-care support in school. The school nurse had an unclear responsibility indicated by the fact that 60% of the parents were unsure of the role for the school nurse. Only 1.5% of the parents had experienced discriminatory behavior from school staff.
School staff resources The provision of extra school personnel in addition to the child’s teacher was highest during grades 1–3 (42%). Pediatric Diabetes 2014: 15: 550–556
Diabetes management in Swedish schools Table 1. Clinical characteristics of children and adolescents participating in the study
Number Age (mean ± SD) Gender (% female) HbA1c (mean ± SD) IFCC (mmol/mol) NGSP (%) Duration of diabetes (yr) (mean ± SD) Coeliac disease (%) CSII (%) Other chronic disease Municipal school
Grades 1–3
Grades 4–6
Grades 7–9
Total
89 8.0 ± 1.1 43%
113 11.0 ± 1.1 59%
124 14.1 ± 1.0 52%
326 11.4 ± 2.7 52%
57.8 ± 8.9 7.4 ± 0.8 3.5 ± 2.1 8% 28% 7% 94%
62.5 ± 12.9 7.8 ± 1.2 4.3 ± 2.8 7% 42% 4% 93%
64.0 ± 13.4 8.0 ± 1.2 6.4 ± 3.6 14% 44% 7% 86%
61.8 ± 12.4 7.8 ± 1.1 4.9 ± 3.2 10.0% 39% 6% 91%
CSII, continuous subcutaneous insulin infusion; HbA1c, hemoglobin A1c; SD, standard deviation. Data are divided into three groups according to school settings in Sweden. Other chronic disease indicates that the child has impaired functioning in school because of a chronic disease other than diabetes. Table 2. Some selected questions and answers stratified by age group Grades 1–3
Grades 4–6
Grades 7–9
Total
Does your child have access to one or more members of staff with principal responsibility to support diabetes self-care during school time? (N = 305) 1. Yes, one 40 (47%) 33 (32%) 19 (16%) 92 (30%) 2. Yes, more than one 22 (26%) 7 (7%) 10 (9%) 39 (13%) 3. No 23 (27%)**, †, 63 (61%)*‡ 88 (75%) 174 (57%) Does the school have a written action plan for treatment of hypoglycemia? (N = 312) 74 (67%)**, ‡ 45 (38%) 1. Yes 67 (81%)*, † 2. No 16 (19%) 36 (33%) 74 (62%)
186 (60%) 126 (40%)
Are there any additional staff resources in school because of your child’s diabetes? (N = 296) 1. Yes 35 (41%)*, † 13 (13%)**, ‡ 1 (1%) 2. No 50 (59%) 89 (87%) 108 (99%)
49 (17%) 247 (83%)
How often do you reduce your child’s dosage of insulin because of fear of hypoglycemia in school? (N = 323) 1. Every day 3 9 2 14 21% 31%†(NS) 11% 25%**, ‡ 2. At least once a week 24 19 12 55 3. At least once a month 13 (15%) 26 (23%) 31 (25%) 70 (22%) 4. Never 47 (54%) 59 (52%) 78 (63%) 184 (57%) Are you worried during school time that your child doesn’t get good self-care support? (N = 320) 1. Yes, every school day 10 (12%) 19 (17%) 15 (12%) 2. Yes, some time every week 26 (30%) 42 (37%) 37 (30%) 3. No 50 (58%)†(NS) 52 (46%)‡(NS) 69 (58%)
44 (14%) 105 (33%) 171 (53%)
How often during school time do you have telephone contact with school staff or your child concerning diabetes treatment? (N = 315) 1. Several times a day 9 10 3 N = 41 N = 36 N = 12 2. Once daily 4 8 4 **, 48%†(NS) 10% 33% ‡ 3. A couple of times per week 28 18 5 4. A few times a month 33 (38%) 37 (34%) 32 (26%) 5. Never 12 (14%) 35 (33%) 77 (64%)
22 N = 89 16 28% 51 102 (32%) 124 (39%)
NS, non-significant. *p < 0.05, ** p < 0.01. †Grade 1–2 vs. grade 4–6. ‡Grade 4–6 vs. grade 7–9.
Six of the children who received extra resources had additional functional impairments besides diabetes. There was no difference between small and large schools in the availability of extra resources. Fifty-seven percent of the children did not have any school personnel with the principal responsibility to support their diabetes self-care during school time. There was a significant difference according to age Pediatric Diabetes 2014: 15: 550–556
of the child. In grades 1–3, 27% of the children were without this support, compared with 75% of the adolescents in grade 7–9 (p < 0.01; Table 2).
Communication between school and parents Telephone contact with their child or school staff about the diabetes treatment at least once weekly was
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S¨arnblad et al. reported by 28% of the parents, and 20% of the children reported telephone contact with their parents at least once weekly. The communication between school and the parents took several forms, including contact by telephone, visits to the school by parents, contact with staff at the start or end of the day, or by keeping a logbook. However, 18% of the parents reported no regular contact with school staff.
Associations to self-care management in school Metabolic control. On a group level, there was no difference in metabolic control for those who had a member of staff with principal responsibility to support diabetes self-care, extra personnel resources, or a written action plan for hypoglycemia compared with those who lacked this support. Parental perceptions of care in school. Parents were significantly more satisfied with self-care management in school if there was an adult with principal responsibility to support diabetes self-care (p < 0.001) or extra personnel resources besides the child’s teacher (p < 0.01). This effect was observed in all age groups. There was a tendency toward lower levels of worries among parents whose child had an adult with principal responsibility to support diabetes self-care in school (p = 0.075). Subgroup analysis showed that there was a significant association only in grades 1–3 (p < 0.001) A written action plan for treatment of hypoglycemia was associated with higher levels of satisfaction with school support among parents (p < 0.001). Discussion This national survey evaluated the situation at school of children and adolescents with type 1 diabetes in Sweden, taking into account the perceptions of parents, schoolchildren, and the professional diabetes teams. We found significant deficiencies in the support of selfcare management, demonstrated by the fact that half of all children and adolescents lacked a member of staff with principal responsibility to support diabetes selfcare during school time and 40% lacked a written action plan for the treatment of hypoglycemia. Furthermore, 21% of the parents regularly gave less insulin than they estimated to be needed at breakfast because of fear of hypoglycemia during school time. Sweden has been proposed as a good example of diabetes management in school (5) because of the regulation to ensure support in self-management of chronic disease in Swedish schools. The regulation has been made even more rigorous since this study was conducted (10, 11). Legislation by the Swedish National Agency for Education states that the responsibility for supervision is transferred from the
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parent to the municipality at school or in schoolage childcare (11). Accordingly, the responsibility for support in self-care of children with diabetes is transferred to the school staff. The need for support has to be documented and updated in an individual action plan, in a collaboration between the child, parents, diabetes care team, and the school (10). In contrast to many other countries, school nurses in Swedish schools have responsibility for preventive health care but are not involved in the supervision of self-care in children with diabetes. Instead, the child’s teacher, or another school staff member, has the responsibility to support the child in place of the parents. The school principal has the responsibility to arrange appropriate support. The specialist multidisciplinary diabetes care team provides appropriate training for the school personnel when a child is diagnosed. When a child is discharged from the pediatric department a meeting is arranged between the family, the school personnel, and the diabetes team, where the need for support is discussed. The regulation and the established procedures for collaboration between diabetes care team, parents, and school provide a solid foundation for adequate self-care for children with type 1 diabetes. Diabetes care in schools varies greatly between different countries in terms of legislation, staff supply, and distribution of responsibility between parents and schools (5). This makes comparison between studies within different school systems difficult. Forty-four percent of the parents in our study reported dissatisfaction with the care of their child at school. This can be compared with data from two US studies, in which 75% (12) and 57% (13) of the parents were dissatisfied with the diabetes care provided in school. The Danish Diabetes Association reported in 2008, from an unpublished study of 512 families with a child aged 6–15 yr, that 83% of the children had no member of staff with principal responsibility to support diabetes self-care in school, and 37% of the parents adjusted insulin dosages to avoid hypoglycemia during school time (14). From this perspective, it seems that the support in Swedish schools is of better quality, possibly because of the legislation concerning support in self-care. In our study, 28% of the parents reported telephone contact with their child or school staff about the diabetes treatment at least once weekly. In comparison, 50% of the parents in Denmark had daily contact by telephone with their child, and 20% of the parents in Italy were fully responsible for their child’s insulin administration at school (15). The fact that many parents can never transfer the responsibility to school staff is important, as burn-out symptoms are common among parents of children with type 1 diabetes and are often associated with the feeling that the disease affects their everyday life (16). Pediatric Diabetes 2014: 15: 550–556
Diabetes management in Swedish schools Previous studies have shown a relationship between parents’ fear of hypoglycemia and their beliefs about the child’s ability to handle hypoglycemia events (17). As 44% of the parents in this study were dissatisfied with the support in school and as only 60% of the schools had a written action plan for hypoglycemia, the parents’ strategies to avoid hypoglycemias during school time are understandable. We found that one fifth of the parents gave suboptimal insulin dosages at least once weekly to avoid hypoglycemia in school. Target-setting has been shown to influence glycemic control (18). Even if we did not find any correlation with metabolic control on a group level, this strategy could be of importance in the longer perspective. It is furthermore possible that periods of hyperglycemia following suboptimal insulin treatment affect the child’s learning capacity (19). This may be one explanation behind the lower degree of school achievements shown in young people with type 1 diabetes (20, 21). The need for support in self-care is dependent on the age and developmental level of the child. Most adolescents have adequate knowledge about diabetes self-care to take independent responsibility to their self-care. However, school personal needs to be engaged in the self-care during school time to support in structural issues for example during physical education and lunch-meal. In this study we found that young children receive adequate support for selfcare management in schools, but the support is highly variable between different schools. We found that the support from school was highest during grades 1–3 and thereafter decreased significantly. In grades 7–9 very few adolescents had a member of school staff responsible for supporting them in self-care. This is comparable with the US studies reporting that only 9% of high school students had an extra support (22). In contrast to this, we found that parental worries about insufficient support in diabetes self-care were independent of age. Quality of life of the child is reported to decrease when children with type 1 diabetes enters adolescence simultaneously as parental burden of disease is decreased. (23). Adolescents’ increasing independence from their parents is sometimes at the cost of decreasing quality of life. With this in mind, it is important that schools continue to provide self-care support, as many adolescents are not ready for the increased responsibility and independence, especially if neurocognitive disorders coexist. One shortcoming of this study is that we have no data on the families that did not answer the questionnaire. However, we believe that the results from the survey are highly representative for the national cohort, as 41 of 44 diabetes clinics in Sweden participated in this study, and the HbA1c and clinical characteristics were similar to national data. Furthermore, according Pediatric Diabetes 2014: 15: 550–556
to 2007–2008 statistics from The Swedish National Agency for Education, 52% of the students attended a school with over 300 students and 87% of the schools in Sweden were municipal (4185 of 4826 schools). These data are highly comparable with our results. Wagner et al. (24) found that training of school staff in diabetes management improved glycemic control of the schoolchildren with diabetes. Thus, one possible improvement of self-care management in the school setting would be to make a diabetes nurse available as a resource. This specialized nurse should provide education and support to school staff, and work to improve communication between the parents and the school (25). However, research is needed to determine which support structure that would give the best results for children and adolescents with diabetes and their parents. In conclusion, this nationwide survey shows that even if Sweden by law has secured the child’s right to support in diabetes self-care in school, diabetes management in Swedish schools still needs to be improved. The effect of national regulations needs to be closely monitored in order to secure equal support for all children with type 1 diabetes.
Acknowledgements This study was supported by grants from the Diabetes ¨ Association in Orebro County, Sweden, and an unrestricted grant from a consortium of pharmaceutical companies (Sanofi-Aventis, Medtronic, GlaxoSmithKline, Novo Nordisk, AstraZeneca, Novartis, MSD, Lilly, Roche). We would like to thank the pediatric diabetes teams that contributed to this study, as well as the children and their parents who participated in it.
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