We searched MEDLINE, Embase, and PsycINFO via Ovid, as well as CINAHL on February 16, 2023, using Medical Subject Heading terms and text words related to T1DM and social media (see Multimedia Appendix 1). We selected search terms based on previous reviews on related topics (eg, Elnaggar et al [8] and Faulds et al [26]) and refined them with the support of a librarian. The search was restricted to studies published in English since 2012, which was when social media became more mainstream. To complement our electronic search strategy, we manually searched reference lists of included studies.

Our criteria for selecting papers, structured according to population, phenomenon of interest, and context [33] are mentioned in Table 1.

At least 2 reviewers independently conducted 2 rounds of screening (round 1: title or abstract [YM, LH, and KL]; round 2: full text [YM and KL]) to assess papers against the criteria in Table 1. Discrepancies between reviewers were solved through discussion.

Young people exhibited different levels of engagement on social media. Some could be categorized as “content consumers” or “lurkers” who tended to be more passive observers [39,43]. They might consume content, such as reading blogs and following forums, to stay informed about the others’ experiences, but they rarely contributed content or engaged with the other users [39,43]. This might be due to a lack of time, having other priorities, or not being interested in posting [41,42,44]. For example [39],

On the other hand, there were “active participants” who actively contributed to the social media community. They regularly shared content related to their diabetes journey, interacted with T1DM peers, offered insights to raise awareness, and fostered connections within the diabetes community [39]. Some “active participants” also worked as “role models” to motivate fellow users by showing a positive attitude toward T1DM management and sharing how they combatted their condition [44,45]. For example [39],

Young people expressed different opinions toward diabetes disclosure on social media. Some were comfortable being open and outspoken about having T1DM, freely disclosing their condition in their posts and even profile descriptions on public-facing platforms such as Instagram (Meta Platforms) and Twitter (Twitter, Inc), thus appearing to consider it part of their online identity [39]. For example [39],

Others selectively shared their T1DM-related activities in more inclusive platforms such as Facebook (Meta Platforms) group and Snapchat (Snap Inc), appreciating the features that allowed them to choose audiences or block unwanted viewers to keep themselves safe and protected from unwanted strangers accessing personal information [39,44]. For example [39],

Additionally, some young people chose not to share their T1DM-related activities possibly due to previous bad experiences or concerns about potential misunderstanding or judgment from others [39]. For example, one female participant aged 18 years explained [39],

Social media were perceived by young people of T1DM and HCPs to be easier and more timely means of communication and to have quicker access to information compared with traditional methods such as email and phone calls [22,43]. For example, unlike the complexities of searching through emails and distinguishing spam, it was “just at the tip of your fingers” [22] to flip through information and communicate with others.

Social media also provided an alternative online channel for seeking peer support compared with in-person interactions. This online support complemented face-to-face interactions, offering individuals a sense of autonomy to access social support whenever they felt ready and comfortable [41]. At the same time, however, others felt in-person meetings could offer a chance to better understand personalities and foster deeper connections [41].

The platform’s user interface design and how content was presented influenced young people’s and HCPs’ choice of using social media in T1DM self-management [22,43,44]. Young people and HCPs expressed a preference for well-organized platforms that simplified the process of finding specific information [22]. Platforms that appeared messy and overwhelming with excessive information might deter users’ exploration and engagement [43,44]. Additionally, young people preferred regularly updated content that aligned with their needs—they found it difficult to feel engaged or interested if platforms did not offer anything new or relevant to their experiences [39,44]. Younger participants further expressed a preference for colorful platforms that provided age-specific information on a wide range of topics [39,44].

Trustworthiness was another important part that affected young people’s use and HCPs’ recommendation of social media for T1DM self-management.

First, young people with T1DM and HCPs tended to trust platforms with well-presented facts [44], using formal and professional language rather than casual language such as “lyk dis” (18-25 years) [38].

Second, young people were more likely to use platforms that were recommended by sources they perceived as reliable, such as HCPs and peers [22,43], while HCPs felt more comfortable offering information via sites that were developed with or moderated by HCPs to ensure accurate information was given [43]. One HCP explained [43],

Third, young people trusted transparent platforms where they knew who was allowed to join and use the platforms as users. Otherwise, they might feel unsafe or concerned about interacting with malicious or deceptive individuals [44].

Social media could provide diverse diabetes-related information, such as food and sports tips, insulin and pump instructions, information about drugs and medicine, advice on healthy habits (eg, abstaining from smoking or drinking alcohol), and insights on long-term complications and future expectations about life quality [39,44]. Moreover, social media provided information tailored to different groups of people, such as age-specific information for children and young people and diabetes management guidance tailored to the needs of caregivers and school staff [44].

Social media also served as a valuable platform for young people with T1DM to learn from the experiences of their peers who openly discussed different treatment options and gave advice based on their experience [39,43]. This real-life experience complemented the more standardized advice from HCPs and clinical services [39,44], bringing pros and cons of treatment to life. As such, it better informed young people’s understanding of different treatment options [22,40,41,44]. One female participant aged 18 years explained [42],

Social media offered opportunities for others to learn and stay up-to-date about T1DM. For example, caregivers and school staff could equip themselves with knowledge involving T1DM management to provide more appropriate and informed support to young people with T1DM [43]. Additionally, the knowledge shared on certain types of public-facing social media (eg, YouTube videos and hashtag campaigns on Instagram and Twitter) played a vital role in raising public awareness and reducing misunderstandings [44], such as the misconception that T1DM was associated with being overweight as shown in the quote “...Most people think you have to be overweight to have diabetes.” (female participant aged 14 years) [39].

T1DM self-management has the potential to be an overwhelming process, often leading to mental health issues, such as anxiety and depression [10,48]. While social media could be a source of emotional support to help them manage these [22,40,42,46], there were examples in the literature of it being associated with negative feelings, for example, diabetes-related stigma [39] and sometimes increasing feelings of loneliness [42].

First, social media provided a platform for young people with T1DM to openly share their feelings and seek comfort and understanding from other users [23]. When they did so, it was very common to receive positive and encouraging responses [39]. These positive responses from their peers could validate their condition and uplift their spirits, making them realize they were not alone in the journey of managing T1DM and gradually accepting the condition as “second nature” [39]. For example [41],

At the same time, however, others felt that despite the positive feedback they received, those without T1DM could not fully comprehend their challenges [39]. This sense of disconnection further intensified their feelings of isolation [39]. One female participant aged 17 years explained [39],

The conflicting views above highlighted the importance of emotional support from peers with shared experiences and who truly understood the challenges. This shared understanding could give young people a sense of belonging and normalization, creating a safe space where they could freely express their emotions and struggles. Furthermore, shared experiences could easily foster strong bonds and friendships with others [22]. For example, young people tended to use social media to reconnect with peers after attending a face-to-face diabetes camp [45]. This was particularly important for young people who lacked family support, as it could provide supplementary information and emotional help [40,44].

Humor and hope were 2 important strategies that young people used to cope with T1DM [39,44]. By joking about their condition on social media, they could reduce the stress associated with it and treat it as “less of a big deal and kinda normalize it” (male participant aged 15 years) [39]. Additionally, some young people used humor to defend themselves against potential bullying and negative comments. For example, 1 person explained, “I just have to eliminate that chance [of bullying] by like making fun of me before they do” [39]. Moreover, some young people posted jokes and humor and had a positive outlook on social media to inspire their peers to take on a more optimistic approach to deal with their long-term conditions [39]. Finally, young people also expressed hopes of a cure for T1DM on social media [44]. This outlook could fill them with hope and excitement, igniting a sense of optimism for the future.

Social media changed the way how young people with T1DM received support from HCPs [22,43]. In some cases [22], young people reported that their parents communicated with HCPs about their diabetes and felt their parents were not fully informed about their condition. Social media enabled young people with T1DM to communicate directly with their HCPs, promoting greater engagement in self-management and empowering them to take control of their condition [22]. For example [22],

Young people also valued the timeliness of communication via social media in between clinic visits. For example, when wanting to contact HCPs, young people with T1DM could send direct messages to their HCPs, rather than going to clinics, sending emails that were lost or never replied to, or trying to get in contact through a phone [22,43].

Engaging with HCPs through social media offered the potential to cultivate a more personalized HCP-patient relationship [22,43]. By sharing insights with HCPs about their lifestyle and preferences, HCPs could better understand young people’s conditions and adopt a more patient-centered approach to care. Young people with T1DM and HCPs believed this resulted in better and more tailored support [22,43]. For example, “you would probably get to know each other a bit more and you would be more knowledgeable about things going on” [22].

Despite the benefits mentioned above, some young people felt awkward when they engaged with their HCPs through social media [22]. They expressed privacy concerns about the potential inspection and judgment if their HCPs were a part of their personal social media platforms or if their HCPs inadvertently invited someone they did not know into their private conversation, potentially leaking their personal information to others [22]. For example [22],

The supplementary role of online peers’ experiences identified in our synthesis, which was confirmed by other studies [8,14,27,49,50], implies that HCPs should consider integrating customized peer-to-peer mechanisms into traditional services to provide better health care. For example, moderated social media online forums and Facebook groups such as Diabetes UK [35] and Diabetes Yes [42] have created online communities that provide professional-reviewed knowledge and real-life experiences from peers that complement medical care. HCPs could recommend that their patients access these platforms to get information and peer support between clinic visits. Meanwhile, they could participate in moderated online groups to communicate with and support their patients.

However, the reliability and applicability of information and experiences exchanged online cannot be assured [22,37], social media platforms and HCPs should educate young people on how to identify credible online health information about their T1DM, for example by providing evidence-based knowledge and contrasting it against misleading content [22,43].

Furthermore, our synthesis showed that young people have different comfort and engagement levels in sharing their T1DM-related content online. This may warrant further refinement of available functionality within social media platforms to give users more control over what they share with whom, such as features allowing selective audiences or restricted profile access.

Our synthesis identified that young people had privacy and safety concerns about using social media and involving HCPs for T1DM self-management [22,39,44]. Existing guidelines [27,53,54] provided a broad and comprehensive framework for safe social media use and appropriate HCP involvement, but these did not incorporate patient and HCP input, and may be outdated given the rapidly evolving social media landscape. Furthermore, protections for patients regarding inappropriate HCPs’ involvement were insufficiently addressed.

Recommendations could be enhanced by developing updated and evidence-based guidelines that incorporate input from patients and HCPs. Informed consent procedures could be added to existing guidelines to protect patients by (1) informing patients on the risks and best practices of using social media for T1DM self-management; (2) emphasizing patients can opt out of HCPs’ involvement in their social media T1DM self-management; (3) providing clear conduct guidelines for HCPs; and (4) establishing formal reporting channels for patients’ concerns over uncomfortable interactions, boundary violations, or privacy issues.

The participants in the included studies were mostly social media users; only 1 study in our synthesis [22] included a small proportion of participants who did not have social media experience. This may have introduced a potential bias toward more positive views, especially as several studies interviewed young people involved in developing a social media platform. To gain a more holistic perspective and inform platforms and guidance suitable for a broad range of young people with T1DM, future research could include input from nonsocial media users.

The first-order qualitative data included in our synthesis consisted of participants’ quotations about their experiences and opinions. Future studies could analyze young people’s social media posts to gain additional insights into their actual (instead of reported) online behaviors, attitudes, and topics of interest.