Social media platforms such as Facebook and Twitter allow users to create peer to peer support groups which can cater to diverse communities, such as people with severe mental illnesses or chronic diseases and their carers, parent support groups and early career teachers. In the context of peer to peer support, social media platforms allow users to connect over large geographical distances at times that are convenient for them (Niela-Vilén et al., 2014, p. 1534). This is a significant advantage over traditional peer to peer support groups, which rely on members to be within reasonable proximity to each other and where meetings may be scheduled at times which may not suit all members.
Research indicates members of peer to peer support groups on online networks can achieve positive benefits whether they choose to engage with other members and share their experiences, or choose to use the group as a source of information and not engage with other members (Naslund et al., 2016, p. 114). This conference paper focuses on the Communities and Social Media stream and explores the benefits of using social media in a peer to peer support setting and whether these benefits outweigh the risks of potential negative attitudes and misinformation.
Because peer to peer support groups on social media offer anonymity and the choice to selectively disclose information, the benefits of accessibility and overcoming distance and time barriers outweigh the risks of potential negative attitudes and misinformation.
For some people, such as those with serious mental illnesses, there are barriers to accessing traditional peer to peer support, such as being socially isolated, having mistrust in the healthcare system and overcoming trauma (Naslund et al., 2016, p. 114). For these users, who are often labelled and stereotyped by their illnesses, social media peer to peer support groups provide them with a platform where connections can be made with others who experience the same illnesses (Naslund et al., 2016, p. 114). Social media allows these users to share their experiences with other group members without the need to disclose their identity and also avoids some communication challenges, such as misinterpreting body language or social cues from other people. (Naslund et al., 2016, pp. 114-115). Peer to peer group members report experiencing a greater sense of belonging and being able to form strategies to cope with the challenges of living with mental illnesses (Naslund et al., 2016, p. 113).
Anonymity in social media peer to peer support groups can create other challenges such as being unable to confirm the validity of information being posted by group members (Naslund et al., 2016, p. 118). Some social media users in peer to peer support groups believe the information provided by other group members is better tailored to their needs when compared to information received from professionals (Niela-Vilén et al., 2014, p. 1534). Niela-Vilén et al. argue peer support must not replace evidence based professional support, but rather that it be considered a supplemental source of low cost health communication (Niela-Vilén et al., 2014, pp. 1534-1535). Similarly, Tan et al. argue users of social media peer to peer support groups without social support and mental health support networks in place may be more likely to experience negative experiences online (Tan et al., 2021, p. 670). However, studies suggest after searching for, or discussing mental illnesses online, people are more motivated to engage professional mental health care services (Naslund et al., 2016, p. 117). In some instances, this may also create an environment where a patient feels empowered to advocate for their healthcare needs and make their own, better informed decisions (Naslund et al., 2016, p. 117).
Anonymity can also provide a sense of safety to people with serious mental illnesses, and alleviate concerns about how they will be viewed by others (Naslund et al., 2016, p. 115). Studies suggest anonymity provided by social media peer to peer groups allow a person’s true self to be expressed as anonymity creates a barrier to feeling disapproval from others or being judged for making mistakes (Naslund et al., 2016, p. 115). In face to face settings, people with serious mental illnesses are at higher risk of being subjected to discrimination, violent crimes and abuse and social media peer to peer support groups may be the only way to reach some of the most isolated people in this cohort (Naslund et al., 2016, p. 118). For teachers, anonymity in social media peer to peer support groups provides a sense of privacy when they are seeking feedback as they could potentially be seen as unskilled by their employer (Mercieca & Kelly, 2018, p. 64).
Carers and patients with chronic illnesses may be geographically isolated from other carers or patients who understand what they are experiencing and may only be receiving support from their medical professionals (Gavrila et al., 2019, p. 495). For some patients this creates an environment where they feel isolated and connecting with others through social media peer to peer support addresses the issues of geographical isolation and not feeling understood by others (Gavrila et al., 2019, p. 497). Studies suggest people who contribute and help others in online peer to peer support groups feel empowered, more optimistic and better informed, which can improve their self-esteem (Gavrila et al., 2019, p. 496). In some instances, carers and patients with chronic illnesses have been able to connect with people in person and have given or received emotional, medical or technical support after being introduced online via a social media peer to peer support group (Gavrila et al., 2019, p. 496).
Previous studies have shown users of social media peer to peer support groups with health conditions report “(1) being better informed of their health condition; (2) feeling more confident in navigating the health system and their social environment; (3) feeling more able to accept their health condition; (4) feeling more optimistic and in control of their situation; (5) increased self-esteem; and (6) acting to improve their situation” (Tan et al., 2021, p. 662). For caregivers, social media peer to peer support groups provide an avenue to discuss the health outcomes of the person they are caring for and to receive encouragement and positive support (Wilkerson et al., 2018, p. 110). Early career casual teachers find a sense of community in social media peer to peer support groups, which is unavailable to them due to the casual nature of their employment (Mercieca & Kelly, 2018, p. 71). This group of teachers often lack access to mentors, having permanent assigned spaces or being part of learning teams and social media peer to peer support groups can fill this gap (Mercieca & Kelly, 2018, p. 71).
Some individuals in social media peer to peer support groups may feel empowered in sharing their lived experiences and challenging stigmas with facts relating to their mental health conditions (Naslund et al., 2016, p. 116). There are concerns about the privacy of medical information shared online either by a patient or carer (Wilkerson et al., 2018, p. 110) and this poses a greater risk when social media peer support groups are not private and open to the general public for sharing and comments (Tan et al., 2021, p. 662). Administrators of social media peer to peer support groups need to consider the risks of exposing vulnerable groups of people to negative comments and misinformation (Naslund et al., 2016, p. 113). Users should also be made aware if their social media peer to peer support group is not moderated and where there are no professional healthcare workers or trained volunteers to assist with issues (Tan et al., 2021, p. 661). Tan et al. suggest social media peer to peer support groups are often managed by people who have lived experience of the same issues they are providing support for (e.g. mental health) (Tan et al., 2021, p. 661).
Some social media peer to peer support groups have positive downstream effects either for their members, or for communities connected to their members. Teachers who are unable to participate in professional development can be supported by their peers who may provide resources or ideas they would not have otherwise been exposed to (Mercieca & Kelly, 2018, pp. 71–72). In this instance, their students benefit from having access to better teaching/learning resources and different approaches to learning from teachers in other schools supporting their teacher (Mercieca & Kelly, 2018, pp. 71–72). Gavrila et al. identified in some groups there is a sense of altruism where members of social media peer to peer support groups feel the need to pay help forward to other members (Gavrila et al., 2019, p. 495). Studies have shown people with serious mental illnesses have benefited from social media peer to peer support groups by supporting others, which resulted in them feeling less alone and feeling a greater sense of hope (Naslund et al., 2016, p. 114).
While social media peer to peer support groups can expose their members to negative attitudes and misinformation, these issues can be mitigated with the appropriate use of group privacy settings and understanding peer to peer support groups are supplementary to having strong social and mental health supports in place. Administrators of these social media groups should promote this by being transparent about what users can expect from the group, having clear rules around acceptable and unacceptable behaviours and listing any relevant support services if the group is based in a specific country or region.
In many instances, anonymity gives users a sense of protection from discrimination, judgement and stigma. Many users are empowered to speak openly about their experiences in a social media peer to peer support group setting where they would feel uncomfortable to do so face to face, or with their identity known. Similarly, the choice to disclose or not disclose information is entirely up to the user and this also offers some protection. Care needs to be taken when the information being disclosed is related to a third party (e.g. a person receiving care) and social media peer to peer support groups need to ensure there are rules in place to protect the privacy of vulnerable persons.
One of the greatest benefits provided by social media peer to peer support groups is the ability to overcome barriers in geographical distance and time. This flexibility encourages members to connect with content at times that are suitable for them. In some instances, a person’s only support may be a social media peer to peer support group due to geographical distance and time limitations.
While there are many studies relating to social media peer to peer support groups, these groups are extremely diverse in nature and the focus is usually on a specific group. Areas of further research could include the collection of data from several social media peer to peer support groups to better understand the needs and motivations of these diverse groups.
In conclusion, it is my belief the benefits peer to peer support groups provide on social media far outweigh the negatives discussed in this conference paper.
Gavrila, V., Garrity, A., Hirschfeld, E., Edwards, B., & Lee, J. M. (2019). Peer Support Through a Diabetes Social Media Community. Journal of Diabetes Science and Technology, 13(3), 493–497. https://doi.org/10.1177/1932296818818828
Mercieca, B., & Kelly, N. (2018). Early career teacher peer support through private groups in social media. Asia-Pacific Journal of Teacher Education, 46(1), 61–77. https://doi.org/10.1080/1359866X.2017.1312282
Naslund, J. A., Aschbrenner, K. A., Marsch, L. A., & Bartels, S. J. (2016). The future of mental health care: Peer-to-peer support and social media. Epidemiology and Psychiatric Sciences, 25(2), 113–122. https://doi.org/10.1017/S2045796015001067
Niela-Vilén, H., Axelin, A., Salanterä, S., & Melender, H.-L. (2014). Internet-based peer support for parents: A systematic integrative review. International Journal of Nursing Studies, 51(11), 1524–1537. https://doi.org/10.1016/j.ijnurstu.2014.06.009
Tan, Y. T., Rehm, I. C., Stevenson, J. L., & De Foe, A. (2021). Social Media Peer Support Groups for Obsessive-Compulsive and Related Disorders: Understanding the Predictors of Negative Experiences. Journal of Affective Disorders, 281, 661–672. https://doi.org/10.1016/j.jad.2020.11.094
Wilkerson, D. A., Brady, E., Yi, E.-H., & Bateman, D. R. (2018). Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media. Journal of Technology in Human Services, 36(2–3), 105–124. https://doi.org/10.1080/15228835.2018.1449709
10 thoughts on “Because peer to peer support groups on social media offer anonymity and the choice to selectively disclose information, the benefits of accessibility and overcoming distance and time barriers outweigh the risks of potential negative attitudes and misinformation.”
You have chosen such an important topic for your conference paper and I found it an extremely interesting read, well researched and very well written. It was easy to follow and understand and you make some very important points. After reading your paper I completely agree with you that peer-to-peer support groups through social media have become an essential part of many people’s lives and the benefits of these groups far outweigh the negatives. I honestly believe that as more people make use of these support groups online there will be far less tolerance of negative comments and bullying and those users will be slowly removed or shamed out of such groups leaving only those genuinely invested in sharing information and helping others. To me, one of the most eye-catching points you raised was that users gain self-esteem from participating in these support groups and only good things can come from people feeling better about themselves. I believe once a person respects themselves then they can achieve almost anything they put their mind to.
Another great point I liked was the anonymity these groups offer definitely gives users a certain level of protection and allows those users to feel far more comfortable to speak openly than they would otherwise.
You make so many valid and positive points throughout your paper Manuel I would encourage anyone who is uncertain about participating in one of these peer-to-peer support groups online to read this paper and their fears or doubts will be allayed.
Thanks Manuel for a truly wonderful paper.
Bernie, thank you for providing such great feedback. In their paper, Naslund et al. describe how individuals engaging online communities for mental health support may initially feel isolated, stigmatized and feel shame and uncertainty about their condition (2016, p. 115). This may then change to feeling a greater sense of personal empowerment by being connected, challenging stigma and knowing other peers share similar experiences (Naslund et al., 2016, p. 116). This sense of empowerment may also lead to some users feeling more confident in disclosing their condition in person (Naslund et al., 2016, p. 116). I agree the sense of empowerment online communities can provide to such users can often lead to better outcomes and provide opportunities to advocate for their own specific needs. Thank you again for commenting, I look forward to reading your paper.
Bernie, thank you for providing such great feedback. In their paper, Naslund et al. describe how individuals engaging online communities for mental health support may initially feel isolated, stigmatized and feel shame and uncertainty about their condition (2016, p. 115). This may then change to feeling a greater sense of personal empowerment by being connected, challenging stigma and knowing other peers share similar experiences . This sense of empowerment may also lead to some users feeling more confident in disclosing their condition in person (Naslund et al., 2016, p. 116). I agree the sense of empowerment online communities can provide to such users can often lead to better outcomes and provide opportunities to advocate for their own specific needs. Thanks again for commenting, I look forward to reading your paper.
Such an interesting topic you have spoken about. I think social media is such a great space for people to find others in similar situations to them. I hear about people with rare diseases often finding others with the same condition via social media.
I am in some girls advice groups on Facebook and many people turn to these groups to share anonymous questions and may others find people in similar situations with them. These people can then make group chats or connect outside of these groups. I do wonder if there are more groups like these not just for women?
It is so important for people not to feel alone and to feel connected with others and I think you have perfectly shown this in your paper.
Hi Alicia, thank you for commenting. I would hazard a guess there would be similar advice groups on Facebook which cater to different groups of people. I have come across a couple which cater to men such as Blokes v Black Dog which supports men experiencing depression, anxiety or other mental health conditions and Men Care Too which focuses on men in informal and unpaid caring roles. The Men Care Too group appear to run events and meet ups for their members.
You raise an interesting point about being able to connect with others online who experience rare diseases. The “Diagnosis” series on Netflix comes to mind, where Dr. Sanders uses online crowd sourcing to identify extremely rare medical conditions by connecting with other medical professionals, and sometimes people living with the rare condition.
Thank you again for commenting, I look forward to reading your paper.
Great read! I agree with you when it comes to the overall positive benefits produced by these support groups. I myself have gained so much valuable information from online communities around mental health and other areas of health which has made me more confident in seeking proper professional guidance. While I do think that some situations require a greater level of attention and care from trained professionals, online support groups serve many functions in being the initial stepping stone toward seeking help, acting as an accessory for deeper discussion for people seeking professional help and for people who have already received help (or are trained professional providing their opinions).
I think that we have become a world that is so intertwined with technology that the potential risks of receiving false information has become less prevalent. We are no longer in the early days of social media where it is entirely new and unknown, many people (especially young people) have made online communities function parallel with real communities to the point where the flow of information is happening at the same (if not greater) pace as professional information channels. Furthermore, I think the continued support and user involvement in these communities has proven their value beyond its initial expectations. Although there are still risks pertaining to online abuse, bullying and misinformation, having a level of trust in others who are within the same community as you, creates a more trustworthy environment that minimises the aforementioned risks.
I loved reading this paper, and hope you have time to check out my paper, although it is on a completely different topic I hope you are able to find some value within it. Thank you!
– James von Kelaita
Hi James, thank you for commenting and providing feedback. Interestingly, Naslund et al. observed people engaging online communities for information and support are greater motivated to engage professional services for mental health and make more informed decisions as they are empowered to advocate for their own health needs (2016, p. 117). As someone who is currently navigating a similar process, I am glad to hear in your instance, you were able to gain valuable knowledge and seek professional guidance. Social media provides greater visibility for those sharing their mental health experiences online and can challenge the stigma and misperceptions people may have about mental health (Naslund et al., 2016, p. 116). I hope over time, this leads to more people and employers embracing neurodiversity in their communities. I look forward to reading your paper and also commenting. Thanks again
This is such an important topic Manuel, and I agree that online peer-to-peer support networks are overall beneficial. The internet is such a great tool in combatting isolation and disconnection among vulnerable communities. In many cases it’s the most accessible way for people to connect with others, and human beings are a social species, we need that connection. While I was reading your paper, COVID kept coming to my mind. I feel that your work illustrates how important online peer-to-peer groups are, especially for those who are mentally and/or chronically ill, and carers of such people. During COVID this paper has become even more widely applicable to the population as a whole, as so many people have been experiencing isolation like never before. Maybe coming out of the pandemic, people will have more empathy and understanding towards people who experience that level of isolation in their every day lives- pandemic or not.
Silas, thank you for commenting and raising an interesting point on COVID-19. During my state’s stage four lock down, people were physically restricted from travelling more than five kilometres without a valid reason. Many vulnerable people in my community turned to social media for support and I have personally seen many examples of people within my community rallying to help isolated people during the COVID-19 pandemic. Elderly people living alone, people with disabilities and their carers and people forced to self isolate or quarantine during stage four lock downs were able to receive care packages or groceries which were coordinated through social media. It is also my hope that post pandemic, vulnerable and isolated persons continue to be visible and supported by their communities both online and offline.
I think social media has been such a useful tool throughout the pandemic, I’ve also seen a huge amount of support offered to more vulnerable populations, all facilitated through social media. One can only hope that we collectively continue offering that kind of solidarity and care to one another, pandemic or not.