Pre‐adolescent children's experiences of receiving diabetes‐related support from friends and peers: A qualitative study

Abstract Background While pre‐adolescent children with type 1 diabetes receive most support from their parents/caregivers, others also contribute to their care. This study explored pre‐adolescent children's experiences of receiving diabetes‐related support from friends and peers. The objective was to identify how children could be better supported by their friends and peers to undertake diabetes self‐management. Methods In‐depth interviews with 24 children (aged 9‐12 years) with type 1 diabetes. Data were analysed using an inductive, thematic approach. Results Children gave mixed accounts of their experiences of speaking to their school/class about diabetes with some indicating that this had resulted in unwanted attention. Most individuals reported that other children had a limited understanding of diabetes and sometimes acted in insensitive ways or said things they found upsetting. Virtually all children described having a small number of close friends who were interested in learning about diabetes and provided them with support. These friends provided support in three overlapping ways, as “monitors and prompters,” “helpers” and “normalizers.” While some children described benefiting from meeting peers with type 1 diabetes, most indicated that they would prefer to develop friendships based on shared interests rather than a common disease status. Discussion and conclusions Friends and peers provide several kinds of support to pre‐adolescent children with diabetes. Health professionals could consider ways to assist small friendship groups to undertake monitoring and prompting, helping and normalizing roles. Parents, schools and health professionals could explore ways to normalize self‐management practices to better support children with diabetes in school settings.


| INTRODUC TI ON
Type 1 diabetes is one of the most prevalent chronic conditions that develops in childhood. 1 Self-management is a complex and demanding task requiring: frequent monitoring of blood glucose (at least 4 times daily), injecting (at least 4 times a day) or inserting insulin pump infusion sets (every 2-3 days); close monitoring of food intake and counting carbohydrates; calculating insulin doses; regulating physical activity; and monitoring and treating hypoglycaemia and hyperglycaemia. 2 While children are encouraged to participate in these diabetes management tasks from an early age, young children often lack the skills necessary to undertake self-management independently and parental/caregiver involvement remain essential throughout childhood. 3 Although parents/caregivers provide the majority of diabetesrelated support, other individuals are also involved, including friends and peers. 4 As a recent synthesis of qualitative studies exploring the everyday experiences of pre-adolescent children with type 1 diabetes has highlighted, 4 friends provide several kinds of support, including enquiring about their well-being 5,6 ; obtaining hypoglycaemia treatments [6][7][8] ; and making adjustments to their own lives to accommodate dietary and lifestyle restrictions. 6 However, most of the studies included in this synthesis explored children's broader experiences of managing diabetes in everyday life, 5,[7][8][9] with only one focusing on how friends provide support. 6 While offering important insights, this study was undertaken in Brazil; hence, the findings may not be generalizable to other contexts.
To supplement the limited qualitative research undertaken to date, we conducted an interview study with children aged 9-12 years with type 1 diabetes. A key aim was to explore their experiences of receiving diabetes support from friends and peers and whether, how and why they found this support helpful. Our objective was to identify ways in which pre-adolescent children can be better supported by friends and peers to undertake diabetes self-management. The decision to focus on children aged 9-12 years was made by the study advisory group comprising clinicians, diabetes experts and academics with expertise in family and child health. In keeping with previous research, 10 this group identified the pre-adolescent years as a critical time during which children take on more responsibility for managing their diabetes as well as developing closer relationships with peers. 11

| Study design
The study comprised in-depth interviews using age-appropriate questioning, incorporating optional play-based tasks, to take account of children's differing ages and capabilities 12 and enable them to discuss issues they perceived as salient, including those unanticipated at the study's outset. 13 An inductive approach was used which entailed simultaneous data collection and analysis with findings identified in early interviews iteratively informing areas explored in subsequent accounts. 14 Recruitment and interviewing continued until data saturation occurred; that is, until no new findings were identified in new data collected.

| Recruitment and sample
Children (aged 9-12 years) were recruited from four Scottish paediatric diabetes centres, spanning rural and urban locations. After obtaining parents' permission, health professionals approached children during routine clinical consultations using an opt-in procedure. Purposive sampling was used to ensure there was diversity in children's age, gender, and diabetes duration. The sample comprised approximately equal numbers of children using multiple daily injection or pump regimens, in line with usage by this age group across Scotland. Children had to have been diagnosed for at least 6 months to ensure that they had had sufficient time to make physical and psychological adjustments to having type 1 diabetes and to establish an intensive insulin regimen. All participants and their parents/carers completed written, age-appropriate consent forms.

| Data collection
Interviews were conducted by DR, an experienced qualitative researcher, who had attended professional training on ways to involve young children in research. Interviews were informed by a topic guide developed using literature reviews, inputs from advisory group members and revised in the light of emerging findings.
Relevant areas explored during interviews are shown in Table 1.
Interviews took place between July 2016 and February 2017 in children's homes, with one-third of children choosing to be interviewed with a parent/carer present. Interviews averaged 45 minutes were digitally recorded and transcribed in full.

| Data analysis
A thematic analysis using the method of constant comparison 15

| RE SULTS
The sample comprised 24 children (see Table 2 for further details). No apparent differences were noted in the characteristics or responses of children who were interviewed with or without parents/carers present. We begin by briefly reporting children's experiences of informing and educating friends and peers about diabetes. Next, we report children's accounts of friends/peers who had been unsupportive, or had acted insensitively, when they were undertaking diabetes-related tasks, and the upset and distress this had caused. Using children's accounts, we illustrate how friends had engaged with, and learned about, diabetes and had provided three overlapping types of support by acting as "monitors and prompters," "helpers" and "normalizers." We conclude by reporting children's experiences of, and views about, receiving peer support from other children with type 1 diabetes.

| Insensitive and unsupportive peers
Children also reported how many of their friends and peers had little or no understanding of what they needed to do to manage diabetes and how, as a consequence, they sometimes acted in insensitive ways or said things which were upsetting. This included several children who described how their classmates did not understand why they needed to eat sugary foods in lessons in order to treat hypo-

| Helpers
Children also described how their friends had provided practical support by assisting them to perform diabetes management tasks.

| Normalizers
As well as providing practical assistance, children discussed how their friends acted in ways which helped normalize their experience of having, and managing, diabetes. Specifically, children reported how friends had made adaptations to their own lives so they did not need to compromise self-management activities in order to fit in with their peers. Indeed, when friends acted in this way, children discussed being able to remain connected to, and embedded within, their social networks and thereby feel "normal." This included 019 who recounted how one of her friends delayed having lunch at school until she had completed self-management tasks so they could eat together:

| Peer support provided by other children with type 1 diabetes
While all children talked about benefiting from support provided by select friends, many recalled mixed experiences of meeting other children with type 1 diabetes at organized groups/events.
Others also reported feeling ambivalent about whether they might benefit from speaking with, and seeking support from, peers in future. Indeed, although some children speculated that speaking to peers with diabetes might help reduce social isola-

| D ISCUSS I ON
This is one of few studies to explore pre-adolescent children's experiences of seeking and receiving support from friends and peers to help manage type 1 diabetes. Participants described how many of those within their wider peer group struggled to understand diabetes and appeared to act insensitively, or in ignorance. This included individuals who questioned their ability to take part in activities or eat certain foods, and being unsupportive when they performed diabetes-related tasks, such as checking blood glucose and administering insulin.
Children also highlighted the upset, distress and isolation they experienced as a consequence. For this reason, and in keeping with findings reported in other studies, 4,6 children described preferring to interact with, and accept support from, a small number of friends who wanted to help and were interested in learning about diabetes. These friends, as children reported, had often developed knowledge about diabetes by asking questions opportunistically and when observing them perform self-management tasks, which then enabled them to provide three overlapping types of support as "monitors and prompters," "helpers" and "normalizers." While valuing this practical and emotional input from selected friends, children reported more mixed and ambivalent views about receiving support from peers with type 1 diabetes.
As our findings suggest, children reported only limited benefit from speaking to peers who have type 1 diabetes in order to reduce feelings of isolation and obtain advice about diabetes-related tasks.
This, as many children suggested, was because they preferred to engage with other children on the basis of having similar interests (e.g. playing football) rather than a shared disease status. For this reason, it could be argued that our study provides only caveated support for models of peer support which bring children with type 1 diabetes together, such as at diabetes camps 16 or in group sessions, 17 and highlights a need for other day-to-day peer support approaches to be considered. Given that close, self-selected friends both want and are well situated to give the kinds of emotional and practical support which pre-adolescent children value, we suggest that one such approach would be to work closely with small friendship groups to provide the education and support they need to undertake safe and effective monitoring and prompting, helping and normalizing roles.
To achieve this, further research may need to be done with close friends to establish what their information and support needs are.
It may also be necessary to work closely with schools and parents to help ensure they can enable friendship groups to provide support to the child with type 1 diabetes. In the case of schools, this might include offering flexible canteen arrangements so children with diabetes can eat together with their friends. These recommendations might also be applicable to older age groups such as adolescents with type 1 diabetes. This is because a synthesis of studies undertaken with adolescents has similarly highlighted how friends can both help and hinder diabetes self-management. 18 We have also highlighted how children can feel distressed when they encounter peers who, because they do not understand diabetes, can act in seemingly insensitive, inappropriate and unsupportive ways. Other studies have shown that children with diabetes can be vulnerable to bulling by friends and peers 4 and although children in our study did not explicitly state having been bullied, their accounts suggest that this experience cannot be discounted. While some close friends do appear to be capable of understanding diabetes and ways to manage the disease, we would suggest that the problems our participants described are unlikely to be the result of their wider peer group being unable to comprehend and apply diabetes learning.
Rather, as some children in our study noted, the didactic approaches they were encouraged to use, where they educated their class or school by delivering a talk, do not appear to be an effective way of engaging and educating classmates. For this reason, we would suggest that schools and health professionals may need to consider alternative ways to educate pre-adolescent peers. Given that opportunistic and experiential approaches seemed an effective way of engaging and cascading diabetes knowledge to close friends, one strategy might be to allow classmates or friends to observe diabetesrelated tasks being performed, for example an injection being administered, with an explanation given about why this is necessary and the intended outcome. While some studies suggest people with diabetes feel the need to undertake self-management tasks, such as injecting, in private due to fears about stigmatization, this work has mostly been conducted with adults who fear others will associate injecting with drug use 19,20 ; hence, this is less likely to be an issue or concern for pre-adolescent children. We also suggest that, if diabetes self-management activities such as checking blood glucose and injecting are taken out of concealed environments such as medical rooms, this might help demystify the condition and, hence, potentially, reduce instances of teasing. This recommendation is in keeping with findings reported by the authors of a recent synthesis of studies exploring how intensive insulin therapy is used in primary schools 21 who have suggested that to "create a sense of normality and understanding of diabetes at school, it is important to advocate for a wellness approach, reduce stigma, address fear and provide collaborative support." As the authors further note, segregating diabetes care away from usual school activities may bolster and reinforce negative attitudes from school staff and peers as this suggests that diabetes is an illness, rather than part of normal life. Hence, they recommend collaboration between home, health, education and legal systems to explore integration of care into usual school routines to enhance normality, understanding and a wellness approach. Our recommendations might also be used to enhance the support provided by friends of children with other chronic conditions. Similar to the children in our study, recent reviews have found that children with asthma and epilepsy report benefiting from emotional and practical support provided by close friends. These studies have also highlighted a need to educate wider friendship groups in order to help normalize children's experiences of self-managing their disease. 22,23 A key question which this study, like the synthesis by Marks et al, 21 raises, is whether the difficulties encountered by pre-adolescent children with type 1 diabetes might be avoidable through changes in culture and practices within schools and other settings. A particularly emotive issue raised by the children in our study was the upset they experienced when they were unable to eat the same foods and snacks as classmates, and the sense of isolation and alienation they reported as a consequence. As well as helping to raise awareness and understanding of the distress which children may encounter, it should be noted that, with the widespread use of flexible intensive insulin regimens involving multiple daily injections or insulin pump therapy, 24 it should be possible for young people to eat the same types of foods and snacks as their peers as long as an appropriate insulin dose is administered. To achieve this, greater awareness, understanding and resourcing may be required within schools so that more staff are empowered and upskilled to offer appropriate diabetes management support. Better education may also need to be provided to parents to increase their confidence to use flexible intensive insulin regimens 24 and in order to support these being used when children are at school. Indeed, these may be vital steps to help address feelings of low self-esteem which can affect social development and disease mismanagement in children with type 1 diabetes. 25,26 A fundamental study strength is our use of an exploratory, openended design as this has allowed new and unanticipated issues to be identified, namely the different types of support provided by friends and children's ambivalence about receiving support from peers with type 1 diabetes. Using this design, we have enhanced understanding of the difficulties and distress young people with type 1 diabetes may encounter, as well as the vital role which small friendship groups may play in countering this distress and helping them to undertake effective diabetes self-management. A potential limitation is that children may have used their interviews as an opportunity to present themselves in a positive light. 27 Furthermore, we did not include the perspectives and experiences of close friends and other peers; hence, our recommendation that future research be conducted with these individuals. An additional limitation is the restriction of our study to one geographical setting, Scotland, where practices within schools may be different to those in other countries, albeit as the review by Marks et al suggests, the sequestering of activities such as blood glucose monitoring and injecting in offices and medical rooms in school, may be commonplace. 28

ACK N OWLED G EM ENTS
We gratefully acknowledge the support of our collaborators and advisory group members, staff at each of the NHS sites who helped with recruitment, parents who provided consent for their children to participate and each of the children who gave up their time to take part in an interview.

CO N FLI C T O F I NTE R E S T S
DR, JH, KB, JS, SK and JL have no relevant conflict of interests to disclose.