Abstract
Objectives:
The purpose of this study was to assess the experience and satisfaction of teachers and parents of children with and without diabetes, with the Kids and Diabetes in School (KiDS) intervention. Project KiDS aimed to foster a safe and supportive school environment to encourage the management of type 1 diabetes and prevention of type 2 diabetes.
Design:
This qualitative evaluation involved semi-structured, face-to-face, in-depth interviews with a purposive sample of 35 respondents, including teachers and parents of children with and without diabetes attending the selected schools at 1 and 3 months post-intervention implementation. In total, n = 5 schools (3 government and 2 private) were selected out of 15 schools in which the KiDS project was implemented.
Methods:
In total, 65 interviews were conducted in two rounds. The sample comprised teachers (n = 20 in round 1; n = 18 in round 2), parents of children with diabetes (n = 3 in both the rounds) and parents of children without diabetes (n = 15 in round 1; n = 6 in round 2) attending five schools. Data were analysed using the thematic framework method.
Results:
Teachers reported gaining new knowledge as a result of the KiDS intervention. They felt more confident in assisting children with diabetes. Suggestions to strengthen the KiDS resource pack were the inclusion of case studies and audio-visual aids. Parents of children with diabetes reported that the project reinforced information and improved diabetes management skills. Their suggestions for strengthening KiDS materials included the provision of additional technical information. The parents of children without diabetes reported that the resource pack aided a better understanding of diabetes and clarified myths and misconceptions. Suggestions for strengthening the pack included the regular reinforcement of information on diabetes among children.
Conclusion:
Findings support the upscaling of KiDS work elsewhere in India through the engagement of multiple stakeholders to promote the management and prevention of diabetes in school.
Introduction
India has the second-highest number of diabetes patients at 72.9 million, and the numbers are estimated to rise to 134.3 million by 2045 (International Diabetes Federation [IDF], 2017). It also has the second-highest number of children with diabetes (<15 years) next only to the USA (IDF, 2017). The estimated number of children and adolescents diagnosed with type 1 diabetes (T1D) (<20 years) in India is 128,500, and there is evidence of an increase in type 2 diabetes (T2D) in children and adolescents although evidence on it is sparse (IDF, 2017). In India, individuals in whom the onset of diabetes occurs before the age of 15 years constitute between 1%–4% of the total diabetic population (Menon et al., 1990), with a shift towards its initiation in younger age groups (Amutha et al., 2017).
Increasing overweight and obesity in children and adolescents (Pandita et al., 2016; Srihari et al., 2007), a major risk factor for T2D, is a major cause of concern in India (Seth and Sharma, 2013). Schools are widely recognised as an important setting for health promotion (Foster et al., 2008). Early programmes implemented in Indian schools have focused on primary prevention of T2D through awareness (Reddy et al., 2002; Shah et al., 2010). A comprehensive programme that not only concentrates on the adoption of healthy lifestyles for preventing T2D but also aims to provide a supportive school environment for children with T1D and its management has, however, not been implemented. The Kids and Diabetes in School (KiDS) Project was conducted in Brazil and India to foster a safe and supportive school environment that facilitates a better understanding of diabetes and supports children with T1D and also enables the adoption of healthier lifestyle in children to prevent T2D (Chinnici et al., 2019).
Project KiDS involved the development of a cultural and contextual adaption of the IDF Global School Diabetes Information Pack, its pre-testing and tailoring for use by teachers, students and parents in India. Project KiDS involved the training of 1,149 teachers in 15 schools (8 private and 7 government, including 228 teachers trained through centralised State Council of Educational Research and Training [SCERT]) in Delhi. The programme was implemented so as to reach 27,937 students (17,232 students in private and 10,705 in government schools) with outreach to approximately 56,000 parents. Being one of the first programmes of its kind in India, this study aimed to assess the experience and satisfaction of participants (teachers and parents of children with and without diabetes), with the KiDS intervention.
Methodology
Study design
In-depth face-to-face interviews were conducted with teachers and parents of children with or without diabetes in schools where the project had been implemented. Project KiDS was implemented in a total of 15 schools, but the evaluation reported on here was conducted in a sub-sample of five of these schools (three government and two private) that agreed to participate.
Participant selection
Purposive sampling was undertaken in the five schools where the project was evaluated:
Twenty teachers (10 each from private and government schools);
One parent of three children with diabetes;
One parent of 15 children without diabetes.
Study participants were interviewed at 1 and 3 months after the delivery of the intervention (KiDS teacher training and the delivery of a KiDS information pack to teachers, students, and parents). In private schools, interviews were scheduled with the support of a project teacher coordinator. In government schools, the Delhi Government district in-charge of the School Health Scheme (SHS) facilitated the process of scheduling the interviews.
Ethical approval
Ethics review for this evaluation study was provided by the Public Health Foundation of India’s (PHFI) Institutional Ethics Committee (IEC) (TRC-IEC-249/15). Consent for participation in the study was received from school authorities, as well as participants.
Data collection
In-depth interviews were conducted by qualitative data collectors in private, on a one-to-one basis. A semi-structured, face-to-face, in-depth interview topic guide developed by IDF was adapted for use in the Indian setting (Chinnici et al., 2019). The topic guide was translated into Hindi, the dominant language in the study region.
In total, 38 interviews were conducted 1 month after the intervention delivery (round 1). They included 10 teachers each from government and private schools. From the same schools, 15 parents of children without diabetes and 3 parents of children with diabetes were also interviewed. All the interviews were audio-recorded. Interviews were conducted in both English and Hindi depending on the participant’s convenience and understanding.
Three months after the delivery of the intervention, a second round of interviews with the same participants was conducted. In round 2, 18 teachers, 6 parents of children without diabetes and 3 parents of children with diabetes, 2 of whom had been interviewed in round 1, participated. The timing of the study overlapped with annual examinations and summer break in schools, which lowered the response rate in the second round of interviews. The participants in each round are detailed in Table 1.
Participants in interviews, rounds 1 and 2.
Data analysis
Recorded interviews were translated (where required) and transcribed according to a pre-designed transcription protocol. Thematic framework analysis was used to analyse the data. Initially, open coding of five transcripts by two researchers took place, independently. Codes were compared and grouped into categories which resulted in the development of an analytical framework agreed upon by the entire research team. This framework was then used to code the remaining transcripts. Any new codes emerging from the remaining transcripts were added to the framework. Transcripts were coded using Atlas.ti (6.2.11) by two members of the data analysis team and cross-checked by another researcher. The same analytical framework was modified adding relevant new codes and used for round 2 data analysis.
Results
A comparative account based on key findings for knowledge, perceptions about the KiDS intervention and environment (both physical and social) from the interviews with teachers and parents is presented in the following sections. An overview of key findings is presented in Table 2.
Overview of findings.
KiDS: Kids and Diabetes in School.
All quotations below are given a code that refers to a given respondent in each category (T – teacher; PDC – parent of children with diabetes; P – parent of children without diabetes). All codes with the prefix R2 refer to responses from interviews conducted in round 2. Those without a prefix refer to responses from interviews conducted in round 1.
Knowledge about diabetes and healthy lifestyles
Teachers
During round 1 of the interviews, almost all the teachers stated that they had gained new knowledge from the intervention as their knowledge about diabetes had previously been very basic. They reported new knowledge about the different types of diabetes, their causes and symptoms, and the fact that children could also have diabetes. Teachers also realised the importance of diet and physical activity in the management and prevention of diabetes: It happens in children is something that I didn’t know. (T_1; government school) I came to know about diabetes (type) 1, diabetes (type) 2. We just knew the basics of it, but in-depth knowledge I got to know from your session only. (T_3; private school) Diabetes is a lifestyle-related disease in which blood glucose is high. If we bring changes or improve our lifestyle, it would make a lot of difference. (R2_T_4; government school)
Recall of knowledge about diabetes was high during the round 2 interviews, making it evident that knowledge change after Project KiDS implementation was sustainable.
Parents of children with diabetes
The parents of children with diabetes were informed about diabetes, its causes, symptoms and management in round 1. They felt that the project information pack helped reinforce critical issues about routine care and management of children with diabetes: These children (with diabetes) should eat at regular intervals of time and also when their glucose level is low. They should also include regular exercise in their daily routine. (PDC_3; private school) Symptoms like excessive thirst and frequent urination should be known to students. (R2_PDC_2; private school)
Parents of children without diabetes
Unlike the parents of children with diabetes, most parents in this group mentioned that they had gained new knowledge from the KiDS information pack. They came to know about the difference between type 1 and type 2 diabetes, related causes and symptoms, and were also introduced to the fact that diabetes can affect people of all ages. These parents also mentioned that they were aware of the importance of diet and physical activity in the management and prevention of diabetes. For some of them, the common myths regarding the causes of diabetes were clarified: I did not have much knowledge. I only heard that those who have diabetes tend to get weak as the disease progresses and their eyesight also goes bad (becomes weak). (P_7; private school) Diabetes is not a communicable disease. It can happen to anyone and people of all ages. (P_5; government school)
Parents highlighted the need for modification of lifestyle to minimise the threat of diabetes and the importance of symptomatic diagnosis of this disease: If any of their classmates have diabetes, they can take care of them. (P_7; private school)
In round 2, parents were able to recall the new knowledge they had gained: A diabetic child should have (blood sugar) tested at a regular interval to check sugar levels. A non- diabetic should (keep a) check on symptoms. (R2_P_11)
Changes regarding individual behaviour and skills, and behaviour in school
Teachers
During round 1, teachers mentioned that they had become more self-aware and more disciplined with regard to healthier lifestyle choices. Teachers also felt that the training had made them more confident to support children with diabetes: I started taking care of these types of students (children with diabetes). I have 2-3 students in my class with this diabetes problem and I keep on asking them about their condition and if they feel something, like fatigued. (T_2; private school)
In round 1, teachers’ responses focused more fully on personal attitudes and behaviour change. They also described how best to support students with type 1 diabetes in the case of an emergency. In round 2, teachers mentioned how they encouraged students to be more physically active, and in case of any concern they sought a doctor’s advice: Yes, I have a student with diabetes. Now, I take full care of that student. I always ask her, have you had your meal on time and whenever you go for play do not go without taking a meal or water bottle. Before that, I did not have any clue about such supervision. (R2_T_2; private school)
Teachers noted a change in students’ attitudes towards diet, exercise and physical activity. Teachers described an increased openness in type 1 students who felt more comfortable discussing issues with teachers: There is a change in the mindset of the students about it (diabetes) and they are doing physical activities. They are more diet conscious. (T_3) Students are more aware of diabetes. (R2_T_19)
They also mentioned a positive change in student–teacher relationships. Teachers noticed how some students without diabetes had become more supportive and empathetic towards students with diabetes.
Parents of children with diabetes
In round 1, many of the parents of children with diabetes already had the skills to manage their children’s condition, and the KiDS pack was only of help to those parents whose children had been recently diagnosed with diabetes: The pack is good for parents whose children are diagnosed recently. (PDC_2; private school)
Similar responses were obtained in round 2, but here parents focused more on the importance of reinforcing a policy of ‘no discrimination’ against children with diabetes.
Parents of children without diabetes
In round 1, the parents of children without diabetes reported increased confidence and skills about taking preventive measures for children. They encouraged children to be more physically active by sending them out to play and reducing their screen time: If such a child comes (child with diabetes come to my home), I will ask if he has brought insulin, what his blood sugar levels are. I will also keep his doctor’s contact details with me in case of any emergency. (P_7; private school) Yes, I feel confident and can take care of a child (with diabetes) after reading this book. (P_10; government school)
In line with responses to the first round of interviews, in round 2, parents reported that their knowledge and confidence in being able to help a child with diabetes had increased. In addition, respondents also noted that their perspective on diabetes had changed: Perspective has changed, we have a setup in our mind, we all are educated, and have access to advanced technology. We can have control over diabetes. So, we can work upon it to take better care. (R2_P_11; private school)
During round 2, a deeper understanding and flexibility towards meeting the needs of a child with diabetes were also reported.
Satisfaction with KiDS school diabetes information pack and training
Teachers
In round 1, teachers reported finding the training clear and understandable. They welcomed the interactivity of the session and felt information was provided in a straightforward and effective manner: [The] presentation was very good. It was very good and interaction of the leaders (trainers) they were very effective. (T_2; private school)
In both rounds 1 and 2, teachers commended the pack for its clarity and its interesting and attractive content. They found the content age-appropriate, understandable and informative: It is given in basic steps with simple diagrams so they can associate with the topic visually as it is given in the form of pictures, use of bold and big letters. This is what makes it more impressive. (T_6; private school)
During round 2 interviews, teachers described how the KiDS resource pack was interesting and engaging for students and had been used by them for class activities. It also helped disseminate knowledge about diabetes to others, such as family and friends: During the activity which I conducted in class, they (students) used it (pack) very effectively. They keep on using this manual in the class. (R2_T_2; private school)
Parents of children with diabetes
In both rounds 1 and 2, parents were satisfied with the content and appearance of the KiDS school diabetes information pack. They considered it a child-friendly informative resources that provided basic knowledge about diabetes in an understandable, attractive and clear way: Parents and children can comprehend it without difficulties. (PDC_3; private school) The cartoon given in the book can be easily understood by children. (PDC_2; private school) These pictures are attractive and children can grasp them easily. (R2_PDC_2l private school)
The pack helped parents reinforce the advice they gave children regarding diabetes management and also reminded them about things they might forget. To improve the pack, parents suggested a greater stress on presenting information to children in a non-threatening manner and more technical content in the KiDS pack for parents.
During round 2, parents stated that they used the pack and discussed it with the family to reinforce knowledge about diabetes prevention and management. It was reported that children had also used the pack themselves, as well as to spread awareness to others: I read it (KiDS Pack) in the starting when it was given. (R2_PDC_2; private school) Yes, my child has read the book. He also showed it to his younger brother. (R2_PDC_2; private school)
Parents of children without diabetes
Similar to other groups of respondents, the parents of children without diabetes also felt the KiDS pack was clear, understandable, attractive, informative and child-friendly: All information is clear. If anyone will read it, they can understand. (P_2; government school) The book is very attractive. (P_4; government school)
Overall, a positive response was reported to the pack during round 1 interviews. This led to its use by parents and students, as reported in round 2 interviews. Parents had used the pack to gain knowledge and to share information with others: Yes, (I have used the Pack) by telling others and friends about symptoms and prevention, taking a proper diet, suggestions on what to eat and what to avoid. (R2_P_11; private school)
Suggestions for strengthening Project KiDS
Teachers
Teachers suggested the need to strengthen the training component of the project for teachers by the provision of repeat training for reinforcement and added training for students. They suggested the inclusion of case studies as motivational resources for the management and prevention of diabetes, and audio-visual content for use in classrooms: This kind of training should happen often in school among teachers and staff. (T_13; private school) A case study approach could have been used. (T_3; private school) You can incorporate various other activities that can be done in classes. The activities should be interesting and able to arouse the child’s curiosity. (T_5; private school)
Parents of children with diabetes
In round 1, key suggestions included the provision of healthy food in school canteens, the availability of blood sugar–monitoring devices in schools and the provision of a separate medical room for children to check their blood sugar levels and inject insulin. Comparing round 1 and 2 responses, most of the suggestions remained similar. Parents continued to stress the importance of making teachers aware of diabetes in children. However, in round 2, parents also felt that special training should be conducted for any health staff working in the school. They also suggested enhancing the diabetes management skills of school staff and teachers. Parents said school staff and teachers should be trained to measure blood glucose levels in case of an emergency: Sometimes, the sugar isn’t easily controlled and then there is a need to test blood sugar and inject insulin. So, there should be a proper place for that, as he can’t do this in the classroom. It shouldn’t be that the classroom is on another floor and the medical room is in another block. So, it becomes difficult for the child. So, provision should be there in the same building. (R2_PDC_2; private school)
Parents of children without diabetes
In terms of the school environment, parents stressed the need for diabetes-related information to be reinforced more frequently for children, school staff and teachers: Children, parents, and teachers should work as a team and should help and encourage the diabetic child. (T_13; private school)
Discussion
The results of this study reveal that the KiDS intervention was well received in both government and private schools. Desk review and in-depth interviews suggested no current initiatives focused on the management of T1D in school (Rawal et al., 2020). KiDS was one of the few/only programmes available and was widely appreciated by both teachers and parents of children with diabetes (Chinnici et al., 2019). The project created a demand for the intervention to be sustained and scaled up. The importance of a comprehensive approach that fosters management and support for children with T1D through the engagement of the school and parents is evident from findings of the evaluation. Studies have reported the need to create trust between schools and families and break the myths and social stigma/discrimination associated with having diabetes (Capistrant et al., 2019; Haugvik et al., 2017).
A holistic approach is needed to create a supportive environment both within the school and the wider community to foster care, management, equity and the social inclusion for children with diabetes. The Project KiDS intervention was focused on effective management of T1D and prevention of T2D, by encouraging and enabling a conducive school environment. Interaction with teachers/principals during teacher training revealed that some of the parents of children with diabetes hesitated to inform schools that their child has diabetes due to the social stigma associated with the condition. Parents were particularly cautious if a girl child had diabetes for fear that openness about her condition might hamper her chances of finding a suitable match in marriage.
Education is an important factor contributing to empowerment, enabling young people to utilise knowledge and practical skills towards problem-solving and self-care, and assisting them in making informed decisions to manage or prevent diabetes (Swift, 2009). There is evidence that educational interventions in children and adolescents with diabetes have an important effect on psychosocial outcomes (Grey, 2000). In addition to promoting lifestyle adaptations, school-based approaches can identify and promote protective factors within the local culture that can offer support in meaningful ways.
Overall, findings from this evaluation of Project KiDS reveal the intervention had a positive impact on multiple stakeholders, including parents, students and teachers. Results suggested a positive change in knowledge, perspectives, school policy and management skills. Round 2 interviews with all participants revealed good recall of knowledge about diabetes, further changes at the school level in terms of environment to foster prevention and management of diabetes, and an increased stress on reducing stigma. An overall openness and ease in discussing problems was observed especially among teachers and the parents of children with diabetes, pointing to major behavioural and environmental change.
Importantly, throughout the project, certain myths regarding diabetes were debunked, such as the belief that diabetes is a communicable disease and that children with diabetes cannot participate in physical activities. During interviews, suggestions for improvements in the school environment varied from encouraging physical activity and ensuring appropriate meals for students to the provision of medical rooms and supplies such as glucometers.
Limitations
The implementation of this study overlapped with annual examinations and summer break. This meant that data for the second round of interviews were collected at varying time points ranging between 1 and 3 months. In addition, data saturation could not be obtained for the parents of children with diabetes due to the small number of participants interviewed in evaluation schools. The attrition rate of parents of children without diabetes was also relatively high, thereby reducing the participant numbers in the follow-up phase. Due to these limitations, the results should be treated with caution as findings are not generalisable and need to be validated through large-scale studies. Nonetheless, this study is a first of its kind in India, and findings offer important information to provide direction for school and governmental policies, inform scale-up interventions and programmes, and further guide research to promote the management of diabetes in schools. The active engagement of teachers, parents and students, as well as the government, is critical to achieving progress with respect to the effective implementation of such programmes and interventions.
Next steps
Building on the work undertaken, it is important to further engage with school authorities, State Governments and the National Government to develop policy guidelines and a framework for diabetes management in schools. Policy dialogue should involve participation by all relevant stakeholders, including students, parents, schools, communities, endocrinologists, diabetologists, health promotion experts and public health specialists. Among the activities needed are an upscaling of Project KiDS work across India following cultural and contextual adaption of the pack, the development of standardised and robust guidelines for the care and management of children with T1D in schools and the strengthening of components related to diabetes prevention and management in national policies and programmes.
Footnotes
Acknowledgements
We thank the KiDS Project advisory committee for it guidance and support during the conceptualisation and implementation of the work.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article. The project was supported by the International Diabetes Federation.
