The role of social media on psychological wellbeing from the perspectives of young people with type 1 diabetes and their caregivers: a qualitative study

ABSTRACT

This study explores the perceived influence of social media on psychological wellbeing in young people living with type 1 diabetes. Young people aged 13–20 years (N = 19) with type 1 diabetes and caregivers (diabetes healthcare providers and parents) (N = 8) took part in an online focus group or interview. Thematic analysis was used to analyse the data. Participants reflected on social media’s capacity to facilitate accessible peer learning and emotional support. Themes for young people centred on the emotional demand of perceiving diabetes products/diets, stigma, and ‘filtered’ peer profiles. Caregiver themes centred on the accuracy and trustworthiness of diabetes content. Caregivers perceive that young people find it difficult to be open about their condition online. Young people with type 1 diabetes reflected on how social media enables them to control their experience. Findings reflect the paradoxical nature of social media as a diabetes support aid, and practical implications of this are discussed.

KEYWORDS:

• Type 1 diabetes
• adolescence
• social media
• mental health
• qualitative research

Introduction

Type 1 diabetes is a demanding condition requiring individuals to engage in complex self-management behaviours to support their physical wellbeing. The demands of the condition can be emotionally exhausting, and research demonstrates that around 1/3 of adults living with diabetes experience high levels of diabetes distress (Skinner, Joensen, & Parkin, 2020). Diabetes distress refers to psychological distress that is rooted in the emotional burden, management demands, and interpersonal challenges associated with the condition (Fisher et al., 2015; Skinner, Joensen, & Parkin, 2019).

Psychological repercussions of diabetes are evident in younger populations who live with type 1 diabetes (Brazeau et al., 2018; Hagger et al., 2018, 2023). Type 1 diabetes affects more than one million children and adolescents across the world, which is increasing annually. Among adolescents aged 13–19 years (adolescents will be generally referred to as ‘young people’ hereafter) who live with type 1 diabetes, over 1/3 experience elevated levels diabetes distress (Hagger et al., 2018). This is concerning as elevated levels of diabetes distress are associated with reduced self-management behaviour and less healthy blood glucose levels (Hagger et al., 2016, 2018).

In addition, the rates of other psychological challenges, including elevated symptoms of depression and anxiety, are significantly higher than among young people without diabetes (Hagger et al., 2016, 2018). Evidence suggests that young people living with type 1 diabetes are twice as likely to receive a clinical diagnosis of an eating disorder and four times more likely to experience disordered eating than their peers who do not live with type 1 diabetes (De Paoli & Rogers, 2018; Priesterrothe et al., 2021).

In the last two decades, social media (social networking websites or apps) has become central to the lives of young people (Yonker et al., 2015). Young people aged 13–20 years of age have been shown to be the groups most engaged with social media, and surveys of online activity demonstrate that time spent online continues to increase, with over a third of young people using it multiple times per hour and one in six reporting that they use it constantly (Rideout & Robb, 2018).

Young people living with type 1 diabetes are exposed to the same social media content used by young people in general; however, they additionally use social media for diabetes-specific health information and peer support (Fergie et al., 2016; McDarby et al., 2015; Moorhead et al., 2013). Young people living with type 1 diabetes are increasingly encouraged to seek online support, and there is an influx of virtual/app-based interventions to support diabetes self-management (Fergie et al., 2016; McDarby et al., 2015; Reidy et al., 2019).

Previous qualitative work with young adults aged 18–30 years demonstrates that diabetes-specific social media use is habitual and integrated into daily life (Fergie et al., 2016). There is growing interest in the usefulness of social media platforms as modes to improve patient-provider communication, and to increase access to peer support among young people living with type 1 diabetes. Malik et al. (2019) carried out focus groups with 13–19-year-olds living with type 1 diabetes and participants generally felt that social media supported personalized, accessible diabetes self-care and facilitated connection with peers, thus increasing a sense of cohesion (togetherness) and empowerment (Malik et al., 2019). There is a substantial body of evidence to suggest that social media can support diabetes self-care, and is of growing interest in the diabetes community (Ho et al., 2014; Malik et al., 2019; Moreira et al., 2023; Racey et al., 2023; Reidy et al., 2019). Nonetheless, concern has been expressed about the reputability of health information made available online and about privacy/confidentiality uncertainties, risk of information overload, and the risk of receiving information in the absence of training in how to apply it in practice (Elnaggar et al., 2020; Kong et al., 2021; Malik et al., 2019; McDarby et al., 2015; Racey et al., 2023; Reidy et al., 2019).

Young people living with type 1 diabetes experience significant concerns about physical appearance, personal and/or social identity, disclosing that they have diabetes, and fear/experience of stigma (Hagger et al., 2016, 2023). Research demonstrates that social media is a vehicle that can propel social referencing, body image comparison, and unhelpful peer pressure, which contributes to body dissatisfaction, low self-esteem, and low mood in general populations of young people (Kelly et al., 2018; Kwan et al., 2020). Among young adults living with type 1 diabetes, social media plays a substantial role in perpetuating the experience of stigma through triggering imagery, misinformation, and by driving misconceptions about what diabetes is (Blackwood et al., 2023; Browne et al., 2014; Speight & Holmes-Truscott, 2023). This is concerning, as research demonstrates that the experience of stigma is associated with impaired type 1 diabetes self-management and less healthy blood glucose levels (Brazeau et al., 2018). Young people and adults living with type 1 diabetes are more vulnerable to body image concerns and disordered eating (De Paoli & Rogers, 2018; Trojanowski et al., 2023). Social media can enhance exposure to cyberbullying and discourse related to ‘pro-anorexia’ and ‘pro-self-harm’, which may heighten this vulnerability (Kostyrka‐Allchorne et al., 2023).

Beyond a subset of largely quantitative evidence, there is a lack of research exploring in-depth, the ways in which every day social media use can impact psychological wellbeing in young people with type 1 diabetes. Research by Malik et al. (2019) explores the usefulness of social media as a platform to facilitate communication between young people (aged 13–19 years) and healthcare providers but does not inquire about experiences of using social media platforms in everyday life. Other relevant qualitative research focuses on perspectives towards social media content among general adult diabetes populations (Blackwood et al., 2023) and some are quite dated (Browne et al., 2013; Fergie et al., 2016). So there is a need to provide up to date insights into how young people living with Type 1 diabetes experience social media in day to day life.

It is also necessary to explore the extent to which professional and family caregivers are attuned to how young people living with type 1 diabetes engage with and experience social media. To date, no previous qualitative work has explored this. Further qualitative work on this topic can provide a more contextually rich understanding of how and why social media is perceived to influence psychological wellbeing in young people living with type 1 diabetes.

Additionally, by gathering perspectives of young people and caregivers, the findings of this study will be incorporated into an educational comic that captures, narrates, and visualizes common experiences of social media. The comic will be rooted in the themes developed and will be co-designed with young people living with type 1 diabetes. The intention of this comic is two-fold: 1. To facilitate accessible dissemination of the study beyond academic audiences 2. To provide a resource for young people and caregivers to engage to encourage informal learning, introspection, and conversations about social media. Further details on this are reported in the methods.

This study aims to use qualitative methods of inquiry to explore the perceived influence of social media on psychological wellbeing from the perspectives of young people living with type 1 diabetes aged 13–20 years, and also from the perspectives of caregivers (diabetes healthcare providers and parents or guardians of young people with type 1 diabetes).

Methods

Design

This study blends Participatory Action Research (PAR) techniques (Rodríguez & Brown, 2009) and qualitative online focus group and interview methods to explore the research aims. A Youth Advisory Panel (YAP) comprising four young people with type 1 diabetes aged 16–20 years (one young person from Northern Ireland, two young people from the Republic of Ireland, and one young person from Denmark) was established at the start of the study. YAP members informed the design of the study, shaped topic schedules, co-facilitated focus groups, and contributed to the development and refinement of qualitative themes. YAP members also worked with the researchers and a comic book artist to translate the themes into the educational comic book aforementioned. This process was also a helpful way to engage YAP members in the results and supported understanding of how the themes interrelate through the comic narrative (see discussion for more details on this output).

The research is orientated in an Interpretivist paradigm, adopting a Subtle Realist philosophical approach to explore the multiple realities of participants’ socially constructed experiences on the topic of social media and wellbeing (Mays & Pope, 2000; Rendle et al., 2019). This approach was deemed appropriate as the data is approached with the assumption that the perspectives provided by participants are unique to their belief systems, experiences, and interactions with the social world. Through thematic analysis, common and shared insights/experiences relevant to young people living with type 1 diabetes and also caregivers can be observed. Adopting this pragmatic philosophical stance is helpful to collect and collate shared insights that are useful for healthcare improvement and intervention/resource development (Mays & Pope, 2000; Rendle et al., 2019).

This study received ethical approval from the Faculty of Engineering and Physical Sciences at [author institution] (EPS 20_230). All participants aged 16+ and parents of participants aged < 16 signed an electronic consent form. In addition, and signed assent was provided by all participants aged <16 years. This consent process adheres to British Psychological Society guidelines on study participation. This manuscript has been written up in line with the COREQ checklist for comprehensive reporting of findings (Tong et al., 2007).

Recruitment strategy

Recruitment and data gathering took place between October 2020 and March 2021. Eligible participants included young people with type 1 diabetes and aged 13–20 years. This age range is representative of adolescents most engaged in social media (Rideout & Robb, 2018). This is also reflective of a demographic group that is in need of further understanding with respect to psychological wellbeing support needs (Haggar et al., 2018). Moreover, the psychological impact of diabetes and self-management differs across developmental stages, so recruitment of younger and older adolescents provides the opportunity to explore how social media is perceived to impact young people at different stages of adolescence.

The intention was to represent a range of ages and organize focus groups according to age-based subgroups (13–15 years and 16–20 years, consecutively), so that participants would be accompanied by peers of a similar age. This was suggested by the YAP and diabetes clinicians in the research team and steering group. Other eligibility criteria for young people included the capacity to provide informed consent (for young people aged 16 years or older) or assent and parental consent for young people aged <16 years, access to digital technology to take part in an online focus group, and the ability to participate using English language. At the outset, it was decided to exclude those who self-reported an ongoing active mental health crises to minimize risk of psychological harm to young people in a vulnerable position. As it transpired, no-one self-reported a mental health crisis and therefore no-one was excluded on this basis.

Other eligible participants were English-speaking, adult caregivers of young people living with diabetes aged 13–20 years. This included Diabetes Healthcare Providers (DHCPs) (Diabetes Specialist Nurses and doctors who work directly with young people living with type 1 diabetes aged 13–20 years), and parents/guardians of young people with type 1 diabetes aged 13–20 years. To be eligible, caregivers need to be able to provide informed consent and access to digital technology to enable data collection.

There were no other exclusion criteria adopted and no geographical restrictions. However, as recruitment was supported by the social media channels provided by the research team, young people and caregivers were recruited from Ireland, the UK, and Denmark.

Young people with type 1 diabetes received a £15/€15 Amazon gift voucher for taking part. Participants were recruited through purposive opportunity sampling via posters and posts on social media platforms including Facebook, Twitter, and Instagram, and through websites and email lists of diabetes/youth organizations such as Diabetes UK, NI Youth forum, and Emerging Minds, as well as via the institutions and affiliations of the research team across the UK, the Republic of Ireland, and Denmark.

Materials

Flexible topic schedules (see Supplementary items S1 and S2) were developed to prompt discussion during the focus groups/interviews. The topic schedules were reviewed by the project steering group, which includes diabetes healthcare professionals and the YAP. Furthermore, we initially carried out a pilot focus group with young people living with type 1 diabetes. A short introductory pilot focus group was hosted with the first group of 16–20-year-olds to test the focus group topic schedule, which entailed discussing the questions generally. Participants then attended a follow-up session to take part in the full focus group exercise. Although this was not intended for data collection, relevant data collected from this process was retained and was added to the data set for consideration in the analysis to avoid data waste. Focus groups/interviews were hosted on Skype video-conferencing platform. Participants had the opportunity to communicate verbally or by using the chat function.

Overview of participants and data collection procedures

Young people living with type 1 diabetes

In total, 19 young people living with diabetes aged 13–20 years participated in the study. Twenty-six young people (or parents on behalf of the young person for those aged <16 years) expressed interest in the study, but 7 did not provide consent or did not attend the scheduled focus group. See Table 1 for demographic characteristics of young people living with type 1 diabetes.

Table 1. Participant demographics (age, gender, and nationality).

Young people with Type 1 diabetes (N = 19)		Diabetes Healthcare Providers (N = 4)		Parents of young people with Type 1 diabetes N = 4)
Age
13–15	N= 3	Age data not collected		Age data not collected
- 13	n= 1
- 14	n= 1
- 15	n= 1
16–20	N= 16
- 16	n= 3
- 17	n= 1
- 18	n= 4
- 19	n= 2
- 20	n= 6
Gender		Gender		Gender
Young men	N= 11	Women	N= 4	Women	N= 4
Young men	N= 8
Nationality		Nationality		Nationality
Northern Ireland	N= 7	Northern Ireland	N= 2	Northern Ireland	N= 2
Republic of Ireland	N= 10	Republic of Ireland	N= 1	Republic of Ireland	N= 2
Denmark	N= 2	Denmark	N= 1

Of the total sample recruited, 18 took part in an online focus group and 1 person took part in an online interview (due to personal preference). Young people were grouped according to age i.e. older and younger participants took part in a focus group with peers of a similar age, as advised by the YAP panel, to ensure that participants were in discussion with peers of similar stages of adolescence. Fifteen young people aged 16–20 years took part in one of four online focus groups (three focus groups had 4 participants and one had 3 participants. One online focus group was hosted with the 3 young people aged 13–15 years who expressed interest in the study.

Each focus group lasted 60–80 minutes and was facilitated in English by the lead researcher (EB) and one YAP member. EB is a Lecturer in Health Psychology, is female, and has eight years of experience in qualitative data collection, and provided online training and support for each YAP who co-facilitated the focus group.

The decision to host focus groups with smaller numbers of participants was informed by the YAP. It was felt that this would increase a sense of comfort and build rapport more easily in an online environment. We also sought guidance on hosting online focus groups during pandemic situations, which recommended 3–4 participants per online session to accommodate rapport building and to help participants become accustomed to the online environment (Marques et al., 2021). A minimum of three participants is adequate to support varied discussion in a homogenous group, furthermore, iterative data collection over a series of focus groups can increase the efficiency of coding (Gundumogula, 2020).

The one-to-one one online interview lasted 45 minutes and was facilitated by EB.

Caregivers

A total of eight caregivers participated in an online focus group or an interview (this included 4 DHCPs and 4 parents). Participants had no direct personal or working relationship with members of the research team/YAP. See Table 1 for demographic characteristics of caregivers.

Of the total sample, four DHCPs and two parents took part in one online focus group together, which lasted 80 minutes and was facilitated by two members of the research team: EB and MT (MSc Psychology student and research assistant, male, trained in thematic analysis). YAP members did not express a desire to co-facilitate this focus group with caregivers as they felt it would impact the dynamics of the group and influence the discussion. The remaining two parents were interviewed individually by EB due to personal preferences. Interviews lasted 45–60 minutes each.

Pilot calls were arranged for all participants requiring test calls. Skype calls and written chats were recorded by the lead researcher and were transcribed verbatim and stored in a password-protected computer.

Analysis

Focus groups and interviews were transcribed verbatim. Reflexive thematic analysis was undertaken in accordance with Braun and Clarke’s six-step process (Braun & Clarke, 2006, 2019), beginning with familiarization of the data through transcription, noting of initial codes, identification of patterns of meaning, and theme development. The triangulation of focus group and interview data was necessary due to pragmatic barriers, but this practice is not uncommon and can add value to research by increasing the trustworthiness of findings (Lambert & Loiselle, 2008).

Thematic analysis was carried out separately for all young people living with type 1 diabetes and for all caregivers. This facilitated the exploration of experiences and perceptions of social media from a lived experience perspective and a caregiving perspective, to address the aims of this study. Due to the small number of 13–15-year-olds who took part in the study, the decision was made to analyse the data for all young people together. It was deemed appropriate to also analyse caregiver data together because the focus was on gathering preliminary insights about social media from a caregiver perspective. Time and resource limitations also meant that the research team were more constrained with recruitment and the recruitment of young people was therefore prioritized.

EB led the coding of the data, and transcription and coding was supported by CS (MSc Psychology Student, female, trained in thematic analysis), MT (MSc Psychology student and research assistant, male, trained in thematic analysis), and GD (research assistant, female, trained in thematic analysis) coded the data. MD (Consultant Clinical Psychologist, male, trained and experienced in thematic analysis) and BC (Senior Diabetes Researcher, male, trained and experienced in thematic analysis) crosschecked the codes. EB (lead analyst) reviewed and refined the final codes and themes in consultation with the wider research team. The coding process was iterative and included crosschecking codes and themes with the YAP to support the credibility and authenticity of the findings (Korstjens & Moser, 2018; Lincoln & Guba, 1986).

Coders practiced reflexivity through notetaking and discussed their perspectives and assumptions within the wider research team (Korstjens & Moser, 2018). Members of the team involved in the coding do not live with diabetes, which was acknowledged as a potential influence on the analysis, and therefore cross-checking and discussing codes was an important part of the analytic process. Themes and sample codes were reviewed by the YAP which facilitated a form of member checking. Guided by Braun and Clarke’s (2019) commentary on data saturation in reflexive thematic analysis, we did not use saturation as a concept and process to benchmark adequate data acquisition. Data was deemed sufficiently rich to develop patterns of codes that represented units of shared meaning, which were centred around unified concepts (themes).

Coding trees were created to exemplify the trail between themes, codes, and supportive quotes, providing the minimal dataset in support of the findings (see supplementary documents S3 and S4 in Supplementary resources).

Results

A number of broad and interconnected themes were developed for young people living with type 1 diabetes and for caregivers. Table 2 summarizes themes/subthemes for each participant group, with illustrative quotes. See S1 and S2 for additional supporting quotes across themes and subthemes. In the quotes provided, YP refers to young people living with type 1 diabetes, PR refers to parents, and DHCP refers to diabetes healthcare providers.

Table 2. Themes and subthemes for young people with type 1 diabetes and DHCP/parents.

Young people with Type 1 diabetes	DHCP and parents
Theme 1. Peer empowerment in an accessible space	Theme 1. An accessible social learning tool
Theme 2. Emotional demand of diabetes products and ‘promises’	Theme 2. Managing online identity
Theme 3. Mental management of identity-afflicting content 3.1. Authenticity and managing ignorance 3.2 Comparing to perfection	Theme 3. Perceived challenges of autonomous online support-seeking

Young people with type 1 diabetes themes/subthemes

Theme 1: peer empowerment in an accessible space

This theme captures the positive impact of social media platforms that facilitate diabetes information and experience sharing with peers who live with type 1 diabetes. Young people described social media as an accessible, flexible, and (if preferred) anonymous, way of accessing peer-led learning and emotional support. Within this broad theme, young people discuss some of the nuanced ways that online diabetes communities, forums, and diabetes influencers can facilitate a sense of empowerment i.e. feeling informed, understood, and supported in the difficult aspects of self-management. Young people reflected on the helpfulness of learning through peers as well as sharing self-management advice/feedback, and sharing diabetes resources and information (demonstrating reciprocal support). A key characteristic of the type of learning acquired through peers online was that it was mediated and sanctioned by other young people with authentic experience of managing type 1 diabetes. Such opportunities to connect are more difficult to achieve in everyday life.

I have a friend who also has diabetes so we have a group where we can talk about some of the information that we have, we can discuss education, how we are feeling, and some of the habits that we should avoid and some that we should use. (YP8, Young man, 16–20 age group)

In addition to the increased access to peer-informed learning, young people also reflected on how connecting with peers living with type 1 diabetes is a form of psychological support. Learning about others’ experiences of emotional support and the endorsement of common challenges, such as feeling ‘burned out’ and worries about hypoglycaemia, helps young people to feel less alone in their personal struggles with diabetes. By listening to the familiar and relatable stories of others, young people felt reassured about the challenges they face when managing diabetes in everyday life. They felt understood by others with shared experiences and comforted that emotionally difficult experiences are common.

a lot of them would share things about like, late-night hypos and stuff and like random things that you think only you have experienced with type 1 or something. So, it’s nice to see other people going through the exact same things (YP1, Young woman, 16–20 age group)

Theme 2: the emotional demand of diabetes products and ‘promises’

This theme describes young people’s experiences of feeling bombarded by diabetes-related information, ‘sales pitches’, and self-care products. Although social media can facilitate peer-led learning about new technologies and ideas, young people with type 1 diabetes also disclosed feeling overwhelmed at times by the sheer quantity of diabetes-related information online. The sheer abundance of information online can be unhelpful. One participant reflects on her avoidance of diabetes-related content because she felt that it was too much to process at a particular time in her life.

I use social media a lot for type 1, but I didn’t for a long time, I’ve had type 1 for like 10 years and probably for the first 7 or 8 I just avoided it at all costs because it used to make me feel worse. Not because I was comparing myself like my diet or just my diabetes with other people with diabetes, it was just too much diabetes at once (YP4, Young woman, 16–20 age group)

The overwhelm generated by abundant diabetes-related related health information was a common experience for young people, but is not always easy to avoid, especially when algorithms curate content. Young people also discussed the emotional impact of targeted diet-related information and novel diabetes products. Many young people discussed often feeling misled by adverts (and even by others living with diabetes offering unsolicited advice), which could lead them to question their personal dietary and self-care habits.

I suppose for the best control for type 1, it’s heavily diet-focused, and I feel like a lot of diabetics are going to struggle with that, and seeing stuff like that when I was sick or even now it just irritates me because I know it’s false and it’s going out to other people who have probably felt the way that I have felt, and it’s not good (YP16, Young woman, 16–20 age group)

Theme 3 mental management of identity-afflicting content

This theme captures the complex intrapersonal and interpersonal processing and administration that young people engage in when dealing with online content. Consciously or unconsciously, young people navigate content to find useful material, while having to affirm their identity and self-esteem. Young people must recognize and manage their reactions or responses to various types of identity-afflicting content. Two broad identity-afflicting experiences were conveyed by young people and are described across two subthemes: 1. Managing authenticity and response to ignorance and 2. Comparing to perfection.

Subtheme 1: managing authenticity and response to ignorance

Subtheme 1 captures the apprehension young people feel about disclosing their type 1 diabetes online. They feared that by doing so, they would amplify their illness identity, distracting from other aspects of their personal identity. There was a sense that others would perceive them more through the lens of their diagnosis. This was based on experiences where young people felt judged and treated differently because of the label of diabetes – they felt reduced to their condition and the label of diabetes.

I used to get called ‘diabetes girl’, when people saw me in school they didn’t say ‘Oh there’s *name* they would say ‘there’s the diabetic’ because I was the only one in the entire school. I kind of feel posting about it would be continuing that perception which is annoying. (YP4, Young woman, 16–20 age group)

Young people also described numerous experiences of observing and receiving personally stigmatizing posts, comments, jokes, memes, and imagery online. Young people tended to react with shock and disappointment when confronted with posts. Although they recognized that such content reflects ignorance and a lack of understanding, young people nevertheless expressed feelings of hurt and anger.

… people that are uneducated about diabetes, you still see people making jokes about sugar and diabetes, like ‘this dessert is going to give me diabetes’ and every time you see it you’re just like ‘oh my word’. So, there is that side of it as well (YP1, Young woman, 16–20 age group)

A number of young people felt personally attacked and spoke of the importance of confronting stigma and rectifying ignorance to ‘defuse certain fake perspectives’ (YP12, Young man, 16–20 age group). Overall, the experience of being labelled/categorized and stigmatized seemed to underpin hesitancy to disclose having diabetes in public online environments – managing disclosure is an important protective strategy for young people living with type 1 diabetes.

Subtheme 2: ‘comparing to perfection’

Subtheme 2 captures young peoples’ perceptions of peers or influencers living with type 1 diabetes, who tend to post only positive experiences and achievements with diabetes management, medical outcomes, and other areas of their life that they are thriving in. While young people previously discussed the benefits of engaging with peers online, they also felt that it can be less psychologically helpful to engage with too many positive stories. This is in contrast to the emotional validation provided by others sharing their experience of diabetes distress and burnout, as discussed in Theme 1.

It can make us feel like when we do have our bad days, we’re not allowed to have them. (YP2, Young woman, 16–20 age group)

Young people described idealized or untrue accounts posted by others living with type 1 diabetes, which were not reflective of the true challenges of living with type 1 diabetes. Young people appeared to have no difficulty identifying social media posts that were unrealistic. Nevertheless, such posts succeeded in generating pressure to achieve unobtainable targets. An example was given by one participant who described their reactions to seeing other people sharing their blood glucose results. Blood glucose results and body image were two important sources of information young people typically used to self-compare and self-evaluate.

I’ve seen people posting blood sugars like 96% in range of 98% in range from a week or something, and I find that quite unhelpful because it’s not a competition, like who can get their diabetes the most perfect (YP1, Young woman, 16–20 age group)

Engaging with too much of this type of diabetes-related content posted by others resulted in feelings of low self-worth and self-esteem, as young people compared themselves and their own diabetes journey to others.

But there is other people I follow that just like pretend to be perfect and sometimes I can see that and I know that’s not the whole story. Sometimes I look at it and feel like crap about my own diabetes because I’m like I should be like that (YP9, Young man, 13–15 age group)

Caregivers (DHCPs and parents) of young people with type 1 diabetes themes

Theme 1 an accessible social learning tool

Theme 1 captures caregivers’ (DCHPs’ and parents’) perceptions that social media gives young people the ‘freedom’ to ‘connect and talk’ (PR2) with peers with type 1 diabetes. Caregivers felt that social media can help young people to engage with their diabetes identity and to learn about diabetes self-management in two ways.

Firstly, caregivers generally felt that social media increased opportunities for peer-directed and peer-influenced learning about diabetes and diabetes care. Caregivers reflected on how young people living with type 1 diabetes obtain advice and information related to diabetes self-care through peers online. It was recognized that social media plays an important role in diabetes education for young people as well as their parents learning seems to be consolidated through peers and occurs more when self-care advice/tools are peer-sanctioned.

…kids that are looking for the upgrade in technology, new pumps and that kind of thing, or the likes of like wearing a Libre or whatever to see, you would see other people wearing them, see how they use them, see what the practicalities are (DHCP1)

Caregivers also felt that social media increased access to peers and influencers living with type 1 diabetes, which encouraged personal growth as young people learned from and modelled their actions and self-care choices on others. Caregivers discussed the perceived psychological benefits of peer role models including celebrities and influencers with type 1 diabetes. Parents, in particular, felt that observing the experiences and activities of peers with type 1 diabetes empowered young people ‘to be more open about themselves’ and encouraged them to engage with diabetes content and conversations (PR3).

seeing her engage with really positive role models in diabetes, so, Nick Jonas is probably the obvious one beyond type 1, you know, that probably was one of the first things that she would have ever said to me, you know, connected differently (PR2)

Theme 2 managing online identity

This theme captures caregivers’ perceptions about how young people engage with diabetes-related content online. They felt that young people have strategies to manage the extent to which diabetes permeates their personal online identity, and as well as their private ‘mental space’. Caregivers reflected on a trio of engagement strategies they had seen exercised by young people. While some young people with type 1 diabetes do not want to engage with diabetes content and actively avoid it, others engage as bystanders and passively observe diabetes-related content, and a third cluster are actively engaged by posting diabetes-related content and interacting with peers online. Caregivers suggest that the second cohort – those who take on an ‘observer role’ (PR2) – is more reflective of the majority of young people with type 1 diabetes and represents a group who are observe but do not necessarily actively interact with peer-generated and other online diabetes content.

some of them are saying ‘no I don’t want you to send me links, I don’t want to get involved, I don’t want other people to know that I have a chronic disease’ and what I see is that it’s a lot of the young people that, I don’t want to say resources … I meet a lot of the young people coming to me in the clinic, and they are not active – so I think there is also a distinction between the ones that are really using it a lot, posting, influencing other young people with type 1. And then there’s, I think, a really big group watching and listening and then coming to us in the clinic, you know telling about what they have experienced (DHCP2)

Theme 3 perceived challenge of autonomous online support-seeking

Extending the narrative of caregiver theme 1, while role models and peer-facilitated education promote learning and psychological growth, caregivers also discussed risks associated with peer-directed learning and unsolicited content. Theme 3 captures two elements of this. Firstly, caregivers expressed concerns about young people’s capacity to safely navigate diabetes-content, and recognize or discern misleading or harmful content. DHCPs in particular empathized with the decisional conflict that young people may experience when trying to discern diabetes ‘myths’ (DHCP2) from facts online. DHCPs discussed the abundance of diabetes-related information and expressed anxiety about young people encountering and absorbing misinformation or advice that, if acted upon, would be potentially harmful to health.

Yeah, I would talk about it being like a black hole of information, there’s a lot of opinions and a lot of people doing different things, and I suppose we’re having a bit of an issue at the minute with some of our type 1s and eating disorders, and there’s a lot of information both good and bad out there about different types of diet with type 1 diabetes. I think adolescence is just a vulnerable age for that. And yeah, there’s a lot of, again, misinformation out there as well, so I do try and encourage people if they’re reading that kind of stuff to bring it to clinic and talk about it, try and talk about it in an open way, but yea there’s a lot of unhelpful things out there as well and a lot of opinions about how people manage their own condition that don’t always translate very well (DHCP1)

Likewise, parents expressed concerns about young people receiving ideas from peers related to their diabetes, which may impact their emotional wellbeing and may compel them to engage in unhealthy self-management behaviours. Parents worried about the extent to which young people can navigate safely online and discern the ‘good stuff’ from the ‘negatives’ (PR2).

if somebody gives them ‘Well I do this’, and then- which will harm them. Like young girls ‘oh don’t take your insulin, you’ll lose weight, you’ll lose weight’ … that worries me on social media. You know they’re taking advice from other teenagers (PR1)

Caregivers (primarily DHCPs) also reflected on how young people (and parents) also used social media as a source to curate their self-care plan. However, they also used the advice retrieved online to scrutinize, challenge, or validate the professional advice they received. There was a sense among DHCPs that young people sanction authority to peers on social media groups/forums or on popular diabetes influencer profiles/sites, and value the insights and feedback gained from online peers. This corroborates caregivers’ concerns about the nature of advice and information retrieved online.

but then also if you recommend something to them, they’re straight on their group Facebook or whatever type of social media that they use to see well ‘what do they think of this pump or what do they think of that device?’ So I think they don’t just use it as a resource to come back and ask us can they do this, they use it as a resource to find out if the advice we’re giving is effective (DHCP3)

Discussion

This study is, to the best of the authors’ knowledge, the first to qualitatively explore how social media impacts psychological wellbeing from the perspectives of young people living with type 1 diabetes and caregivers. Collectively, young people and caregiver findings highlight the paradoxical influence of social media on psychological wellbeing and provide a greater understanding of how and why social media can be both useful and harmful.

Social media was perceived to benefit psychological wellbeing by facilitating connection with peers living with type 1 diabetes. Online peer contact fosters hope and optimism that self-management can be less lonely and burdensome, and can also facilitate social cohesion, as young people observe the familiar real-life challenges they experience personally. Social media can help young people to feel more empowered – both emotionally and socially – to manage and live better with diabetes.

This has important practical implications because it affirms that social media, and in particular, online peer support, has a substantial role in diabetes education, self-care skill acquisition, and building emotional resilience. This aligns with previous research exploring self-care in this population (Malik et al., 2019; Moreira et al., 2023; Racey et al., 2023). Caregivers similarly recognized the value of social media as a tool to facilitate learning from the experiences of other young people living with type 1 diabetes. Peer-facilitated education and psychoeducation interventions are of growing interest in the diabetes community (Doe, 2018; Helgeson et al., 2023). Research suggests that online peer-facilitated or peer-focused interventions support regular blood glucose monitoring and healthy blood glucose results in young people and young adults living with type 1 diabetes (Bisno et al., 2023).

Research suggests that the emotional support gained from peers living with type 1 diabetes is more valuable to young people and is a greater source of motivation to manage diabetes, than practical learning/advice (in fact, the latter can disempower young people in certain contexts) (Helgeson et al., 2023). Helgeson et al. (2023) examined the function of peer support through the Self-Determination Theory framework and proposed that the sense of relatedness and shared understanding helps to maintain a sense of competence and encouragement to manage diabetes. This helps to further discern how and why social media can be harnessed to facilitate diabetes empowerment. The cohesion and validation accessed through peers in a shared online space can help young people become more accepting of the challenges they experience and less critical of themselves when they feel overwhelmed, doubtful, and burnt out.

While theme 1 for young people and caregivers captures the perceived usefulness of social media, themes 2 and 3 for young people and caregivers summarize common ways in which social media can be emotionally challenging. The accessibility of social media, which usefully facilitates connection with peers, also means that social comparison is perpetuated. Research demonstrates that social comparison, which refers to the act of comparing oneself with others to self-evaluate, is common among young people living with type 1 diabetes (Hagger et al., 2016, 2023). This also impacts self-esteem, mood, and result in less healthy self-care behaviour, including disordered eating (Das et al., 2014; De Paoli & Rogers, 2018; Trojanowski et al., 2023).

The findings suggest that social comparison tends to result in negative self-evaluations when young people with type 1 are exposed to peers with type 1 diabetes who are apparently managing healthily, with little indication of emotional or behavioural struggle. Although the young people who participated in this study recognized that this was not reflective of ‘real life’, it still generated feelings of inadequacy and shame.

Young people with type 1 diabetes also reflected on common experiences of what they perceive to be emotionally harmful content. Uncompassionate, abusive, or inaccurate online posts and imagery, caused upset and anger. The resultant sense of stigma added to a reluctance to engage openly with diabetes-related discussions, and potentially acted as a barrier to intrinsic and extrinsic acceptance of diabetes. This corroborates previous evidence exploring the factors underpinning stigma and shame among adults living with type 1 diabetes (Haggar et al., 2023; Browne et al., 2014; Brunton, 2022; Fergie et al., 2016; Ingersgaard et al., 2021; Speight & Holmes-Truscott, 2023).

Young people living with type 1 diabetes also noted that an abundance of diabetes-related information can feel overwhelming and confusing, and advertised self-care products and programmes can generate feelings of doubt, as young people are prompted to compare their current management activity with often unrealistic or high-cost alternatives – another indication that social media perpetuates social comparison.

Caregivers projected concerns about young people’s ability to discern false or misleading information online from factual, accurate, and helpful diabetes-related advice. DHCPs expressed concern that young people might place equal if not greater value on online advice via peers and influencers and there was an underlying concern that the professional voices/advice could be disregarded. Despite the concerns projected by caregivers, the findings suggest that young people are generally aware of the distinction between helpful and unhelpful content. The narratives conveyed by young people indicate a degree of online ‘savvy’, something that is largely overlooked or misunderstood by caregivers. This may suggest that young people and their caregivers do not openly discuss online activity. This is unsurprising given that young people with diabetes strive to exercise greater boundaries and autonomy over their diabetes management (Ingersgaard et al., 2021).

The findings suggest that young people, whether they chose to observe or be active on social media, are not passive sponges. In this study they reflected on and articulated their experiences of having to manage their emotional responses to different types of online content. These emotional experiences prompt consideration of how young people with type 1 diabetes can be encouraged to continue to design their online experience in a way that best supports their needs.

Practical implications, limitations and future directions

Facilitating communication between young people and their peers with diabetes about shared (positive and less positive) online experiences, and co-designing (see Desborough et al. (2022) for a helpful framework) interventions to support self-regulation while engaging online is a very important subsequent progression of this research. Initial steps to this might involve the co-design of educational resources to frame the common experiential challenges that young people might experience online. An example of this is the educational comic which has been developed by the authors and the YAP involved in the current study. Centred on the themes reported in this paper, the comic provides reminders that social media often shows us ‘filtered’ versions of reality and content can sometimes feel unkind or overwhelming. This resource is open access and available to use as a conversation stimulus to encourage discord about how we can best support young people with type 1 diabetes as they navigate online (King, 2017). The comic can be accessed online here: https://tinyurl.com/5k72ry5r. Contact EB ([email protected]) for further information on this resource.

Signposting to peer groups and diabetes influencer’s who are known to reveal both the positives and challenges of diabetes, can be more reassuring and true to real-life. Furthermore, greater communication about social media as a social learning tool for young people with type 1 diabetes is recommended, to address the apprehensions of caregivers about misinformation and harmful content. Such observations raise the importance of equipping caregivers with the knowledge/skills to support young people with type 1 diabetes online, in a way that retains and respects the autonomy of young people as they navigate their experience. It would also be pertinent to consider how young people can be supported to manage the challenging thoughts and feelings aroused by certain online content or supported to understand when to recognize feeling overwhelmed and overstimulated by social media. Trojanowski et al. (2023) provides an example of an internet-mediated intervention that could be adapted for younger as well as older adolescents to promote self/body and diabetes acceptance, managing stigma, navigating emotionally stressful circumstances, and supporting healthy connections with peers.

This study provides important insights on the digital experience of young people living with type 1 diabetes, however, we acknowledge the limitations of the current study. Despite efforts to recruit and represent young people in their early teenage years, there was a lack of uptake among 13–15-year-olds with type 1 diabetes. Likewise, there is limited diversity among the parents and health care providers, as they all identified as women. Furthermore, as data collection via focus groups was available in English only due to limited resources, this means that, although data saturation in the current sample sets was achieved (where no new codes were emerging by the time the last focus group was facilitated), we cannot assume this is representative of younger/Danish participants.

Future research on this topic can expand on the current findings by investigating this topic in populations of young people living with type 1 diabetes from a broader range of age groups, countries, and sociocultural contexts to capture and represent a wider range of experiences. In person focus groups or world café designs hosted in settings that young people are familiar with (e.g. local community centres) and hosting of focus groups in a young person’s native language, might support engagement and uptake of younger individuals. Recruitment through diabetes clinics and health teams would also expand the recruitment pool and could help increase interest in this type of study. Ecological momentary assessment methods might also be useful to investigate how young people experience social media on a day-to-day basis, capturing mood and reactions to stimuli in real-time (Nam et al., 2021). This could help inform what is needed from interventions to support online resilience/after care, where young people feel affected by the content or interactions that occur.

Conclusions

Social media is a tool with which young people feel that they learn through and authenticate their experience of type 1 diabetes, which supports diabetes social and emotional empowerment. This perspective is endorsed by caregivers and young people living with type 1 diabetes. The opportunity to manage or moderate engagement with diabetes-related content online is a valuable quality of social media as discussed by young people who live with the condition. The findings highlight the psychological burden that young people with type 1 diabetes experience as they strive to manage and filter online content and identity and manage the emotional impact of hurtful and stigmatizing posts and images. This research suggests that young people with type 1 diabetes may benefit from support about how to harness the beneficial qualities of social media and manage harmful online content by means of helpful tools/techniques to self-regulate and discount or avoid content where possible. In recognizing the psychological demand of navigating online and given that young people learn more deliberately and consciously through their diabetes peers, any guidance and support should be generated and communicated by young people themselves.

Acknowledgments

We would like to thank the Youth Advisory Panel who contributed significantly to the design, conduct, and analysis of this research. We would also like to express our sincerest gratitude towards the young people with type 1 diabetes, Diabetes health care providers, and parents of young people with type 1 diabetes who took the time to participant in this research. We would also like to acknowledge and thank Emerging Minds (UKRI) who funded this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The minimum dataset for this research is provided as a supplementary resource (see S2 coding tree with analytic codes and supplementary quotes).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/02673843.2023.2298083

Additional information

Funding

This work was supported by UKRI, through the Emerging Minds seed fund grant call (grant number not available).