Part One of this series about social media and chronic disease looked at what social media is and what it offers people and their care team. In this second post, we’ll look at the theory behind why it works.

A lot goes on for a diabetic. Maybe not as much all the time as the image suggests, but the word bubble in this image is telling. A diabetic can’t forget they’re a diabetic without consequences that can be life threatening. They need to keep track and respond to a myriad of facts, actions and adjustments daily: monitor their status, adjust their food and insulin intakes to respond to environmental and physical factors, stay active and so on.

Social media is changing how we interact with our friends and family, how we seek and share information, and how we meet our informational and emotional needs. It can also be a powerful tool for someone dealing with diabetes or other chronic diseases.

Social media can provide someone with:

• Emotional support,
• Safe places to vent,
• Information and resources that are there when needed even it’s not during office hours, and
• A community of people who have the same concerns and issues they have that others without a chronic disease don’t share and may not understand.

This makes social media an important addition to the resources that people can access in person from their health care team, family and friends.

Close Ties, Weak Ties and Reciprocity

Social media allows people to build new social networks. Kadushin (2012) points out that social networks have value because we can access resources through them, we can trust what we find there, we can reciprocate with information and support and we are able to experience a sense of shared community (p. 164). An online community can supplement and add to our other networks and even offer support that cannot be provided by our face to face community’s networks.

The ability to access to resources outside of one’s usual network of support can be particularly important for the long term well-being of people with a chronic disease.  Chronic diseases are a burden for everyone close to the person with the condition. Diabetic Connect is a social media site owned by Alliance Health that works to empower people living with diabetes. In an article on communications found on the site, a regular contributor wrote this:  “Remember that nobody’s going it alone. When one person in the house is diagnosed with a chronic condition, everyone in the house lives with that diagnosis” (Diabetic Connect, n.d.).

People report not wanting to burden their close tie relationships with all their fears, concerns and daily health status: anyone can get burned out from the obligations inherent in close relationships and feel resentful. As well, our close tie relationships are complex with a range of different relational needs. Asking them to always be the primary source of chronic disease support adds to the burden. Weak tie relationships made online are there in abundance; these weak ties haven’t grown weary of our demands and concerns and can offer a new perspective. It’s also an opportunity to be helpful to others, which may mitigate feelings of helplessness and inadequacy (Wright, 2009, p. 250).

Reciprocity is another important aspect of close relationships. If I’m the one with the chronic disease and I’m the one who always needs a shoulder to cry on, I’m going to start feeling like I’m doing all the taking and unable to support them (Wright, 2009, p. 247.)  Social media connects people with many others who understand what someone is experiencing and can provide the social support that is critical to health without the other complications inherent in close tie relationships. It also gives the person with the condition more options as to what they share and where they share it. As a caregiver advocate says on the Diabetic Connect site, “Diabetes is a daily part of our lives, but it’s not the only part of our lives” (“Diabetic Connect”, n.d.).

The Importance of Social Support and Sharing Knowledge

Social support plays an important role in health outcomes. One of the ways it is thought to do this is by protecting people from the effects of stress a person encounters. This buffering model posits that social capital and other networking benefits bring down someone’s stress level. Another way that social support is thought to improve health outcomes is by experiencing positive interactions which lift people’s mood and help them cope (Wright, 2009, pp. 246-247). This support appears to be a key element of many interactions on the social media site, Diabetic Connect.  Greene, Choudrhy, Kilabuk and Shrank (2010) noted that discussions online between people were open and encouraging, recognized each others limitations and encouraged people to set self-defined incremental goals (p. 289).

More traditional websites can be great sources of information, but on a social media site the user can ask a question and get a targeted answer as people weigh in and share their experiences – sharing their knowledge as well as providing information. Cook and Brown (1991) call this type of knowledge knowing; knowing is what we have learned from our engagement with the world (p. 61). ““Knowing is to interact with and honor the world using knowledge as a tool” (p. 64).

A key part of knowledge sharing and creation is a willingness to be open to interaction: by participating in an online community, the users are signaling their desire to interact. While this kind of sharing can be found in face to face support groups, those groups are limited by the number of people who can physically attend and the need to all be in the same space at the same time. Social media is freed from the restrictions of time and space (Wright, 2009, p. 248).  People also have more distance from each other than they would in a face to face situation, which can lessen people’s concerns about interactions with people they have only just made contact with.

Self and Social Media

Over time, people build an online identity that tends to be idealized; we put our best foot forward. Social information processing theory posits that we do this to attract others. Those in turn receiving the message get an idealized sense of the people they are interacting with and respond with their better selves. The asynchronous nature of the communication online allows people to edit what they say. The back and forth communication then provides a feedback loop that intensifies the positive reinforcement going on between people. This can make online group participation more effective than face to face group work (Wright, 2009, p. 253).

As well, the act of writing down one’s thoughts also seems to have a therapeutic effect by allowing the individual to distance themselves from their emotions (Wright, 2009, p. 250). Wright (2009) points to a study by Floyd et al. (2007) that found that supportive messaging is related to lower cholesterol and cortisol levels, both of which are linked with heart disease and stroke (p. 250).  More recently, in an article that was covered in popular press (“Facebook sharing,” 2012), Tamir and Mitchell (2012) reported that self disclosure engages the parts of our brain that are associated with reward and that’s why we like to participate in social media.

If online interaction can be hyper-positive, it can also be hyper-negative as recent bullying cases in the media have amply demonstrated (“Cyberbullying,” 2012). This argues for organizations to monitor their sites. On Diabetic Connect, information that doesn’t meet the code of conduct is removed. This breaks negative feedback loops before they can intensify. The site also employs patient advocates and others who monitor and step into conversations to help ensure that people are being supported. Other organizations scrutinize their Facebook pages and have the ability to remove posts which are inappropriate for the goals of the site.

Social comparison theory says that finding others in similar circumstances can make us feel that we aren’t alone; our situation is normal given what we are dealing with (Helgeson & Gottlieb, 2000; in Wright, 2009, p. 256). This reduces stress for people facing health issues. People may be inspired by what others are doing; they may feel frustrated that they aren’t doing as well as others. This argues for social media interactions not being the only support given to a person with a chronic disease.

The evidence is there to indicate that social media use by people with a chronic disease is more than a fad; it can positively support health outcomes and well being. In part three, I’ll look at the pros and cons of using sites hosted on Facebook.

References

Cook, S., & Brown, J. (1999). Bridging epistemologies: The generative dance between organizational knowledge and organizational knowing. Organization Science, 10(4), 381-400.

Cyberbullying-linked suicides rising, study says. (2012, October 20). CBC News. Retrieved October 21, 2012 from http://www.cbc.ca/news/canada/story/2012/10/19/cyberbullying-suicide-study.html

Diabetic Connect. Retrieved from http://www.diabeticconnect.com/diabetes-articles/263-chronic-communication-finding-middle-ground?category=beyond+diet+and+exercise

Greene, J., Choudrhy, N., Kilabuk, E., & Shrank, W. (2010). Online social networking by patients with diabetes: A qualitative evaluation of communication with facebook. Journal of General Internal Medicine 26(3), 287-292.

Kadushin, C. (2012). Understanding social networks: Theories, concepts and findings. New York, NY: Oxford University Press.

Study: Facebook sharing comparable to enjoyment from sex, food. (2012, June 23). Retrieved October 21, 2012 from http://washington.cbslocal.com/2012/06/23/study-facebook-sharing-comparable-to-enjoyment-from-sex-food/

Tamir, D., & Mitchell, J. (2012). Disclosing information about the self is intrinsically rewarding. Proceedings of the National Academy of Sciences of the United States of America, 109(21), 8038-8043.

Wright, K. (2009). Increasing computer-mediated social support.  In J. Parker & E. Thorson (Eds.), Health communication in the new media landscape (pp. 243-265). New York, NY: Springer Publishing Company.