So here it is.. The first draft of my rationale for my project. Starting to feel very real now. If you are up for a bit of a read (I know that it is quite long) I would really appreciate your thoughts and feedback 🙂
1657 Bachelor of Communication (Honours)
Chronic Pain Sufferers: Online Support Networks vs. Social Media pages – Discourse Analysis
People in stressful circumstances, such as serious health conditions, often turn to support groups to try and make sense of and learn more about their condition (Van Uden-Kraan, Drossaert, Taal, Lebrun, Drossaers-Bakker, Smit, Seydel, & Van de Laar 2008). In a recent survey, about a third of people diagnosed with chronic health conditions reported visiting online support groups devoted to their health issues (Annenberg National Health Communication Survey, 2008). In the world of Web 2.0, social media has an important role and can be seen as being a successor of the humble online support group (Gray, Merolli & Martin-Sanchez, 2013). This represents and inherent shift of the paradigm of online health information seeking, shifting from traditional Internet search to a more user-centric, engaged and collaborative experience via social media platforms (Hesse, O’Connell, Augustson, Chou, Shaikh & Rutten, 2011).
Research conducted in Australia found that chronic pain illnesses have been reported by 17.1% of males and 20.0% of females of the country’s population (Blytha, Brnabicc, Cousinsa, Jormd, Marchb & Williamsond, 2001). The results of this study show that chronic pain impacts upon a large proportion of the adult Australian population, including the working age population, and is strongly associated with markers of social disadvantage (Blytha, et. al., 2001). Reports show that healthcare consumers will often turn to the Internet as a first point of call for a variety of health information and support (Gray, Merolli & Martin-Sanchez, 2013). If Internet access is available to them; chronic disease sufferers are likely to take advantage of social media for sourcing health information to aid with managing their condition (Fox, 2011) as it eliminates the need for travel and can be accessed at any time of the day or night (Barak, Boniel-Nissim & Suler, 2008).
Online support groups are not limited by geographical or temporal restrictions as might be the case for a face-to-face group (Braithwaite, Waldron, & Finn, 1999) but there may be restrictions for some users if they are physically incapable or do not have adequate internet access. However, with online support groups, there is the potential for a much larger and diverse group composition (Wright & Bell, 2003), which in turn allows members to potentially access a wider variety of information, advice and support (Coulson & Knibb, 2007) and as the nature of chronic pain illnesses are very diverse, this is an advantage for members of these groups. People who suffer from a chronic pain illness can often feel stigmatized, isolated and disconnected from others; they lead the user group in online support networks because of this (Coulson & Mo, 2010; Seeman, 2008).
Support groups can be a helpful tool as they allow members to share comparable experiences and similar challenges they may be facing, which can lead to the exchange of social support (Helgeson & Gottlieb, 2000) and provide the opportunity for social comparison with peers (Campbell, Phaneuf, & Deane, 2004).
Little attention has been given to understanding the factors which may contribute to the success (or not) of online support groups during the course of their existence (Coulson & Shaw, 2013). My research will aim to uncover what makes a successful online support group for people suffering with chronic pain illness. This research will focus on the benefits for psychosocial management via the ability to foster support and share information (Gray, Merolli & Martin-Sanchez, 2013) and the way in which social media aids this process.
Very few studies have investigated social media’s potential in chronic illness, but social media support group usage indicates that there is a potential for an inherent impact on health status and enhanced quality of life for people with chronic pain illnesses (Gray, Merolli & Martin-Sanchez, 2013).
The social media phenomenon is an integral part of Internet culture and thus published literature describing social media interventions and support for chronic disease management need to become more prevalent. It has also been suggested that social media may allow for communication processes that differ from those offered by other information technologies, such as the traditional online support group (Fox, 2011). This shift is important to note as it cements the significance of the idea of Web 2.0 (Hesse, et. al., 2011).
Through my own research and these and other texts, I hope to develop my understanding of the success of online support groups, the way in which social media has the potential to support people suffering with a chronic pain illness and bring a greater awareness to those suffering with chronic pain.
Annenberg National Health Communication Survey. (2008). ANHCS 2008 data set.
Barak,A., Boniel-Nissim,M. & Suler,J. (2008) Fostering empowerment in online support groups, Computers in Human Behavior, Volume 24, Issue 5, Pages 1867-1883. Retrieved from
Blytha, M.F , Brnabicc, Cousinsa, M.J, Jormd, L. R., Marchb, L. M., Williamsond, M. (2001). Chronic pain in Australia: a prevalence study. Pain, Volume 89 (Issues 2–3), Pages 127-134. Retrieved from http://www.sciencedirect.com/science/article/pii/S0304395900003559.
Braithwaite, D.O. Waldron, V.R. & Finn, J (1999) Communication of social support in computer mediated groups for people with disabilities Health Communication, 11, pp. 123–151
Campbell, H.S., Phaneuf, M.R. & Deane. K (2004) Cancer peer support groups do they work? Patient Education and Counselling, 55 pp. 3–15
Coulson, N.S. & Knibb R.C. (2007) Coping with food allergy: Exploring the role of the online support group, Cyber Psychology and Behavior, 10 pp. 145–148 http://www.sciencedirect.com/science/article/pii/S0747563207000180
Coulson N.S. & Mo, P.K.H. (2010) Living with HIV/AIDS and use of online support groups. J Health Psychol, 15 (2010), pp. 339–350
Coulson, N.S & Shaw, R.L. (2013) Nurturing health-related online support groups: Exploring the experiences of patient moderators. Computers in Human Behavior, Volume 29, (Issue 4) Pages 1695-1701 Retrieved from http://www.sciencedirect.com/science/article/pii/S074756321300068X
Fox, S. (2011) The social life of health information, Pew Internet & American Life ProjectPew Research Center Publications, Washington, DC, USA
Hesse, B.W., O’Connell, M., Augustson, E.M., Chou, W.Y. , Shaikh, A.R. & Rutten L.J. (2011) Realizing the promise of Web 2.0: engaging community intelligence. J Health Community, 16 (Suppl 1), pp. 10–31
Gray,K., Merolli,M. & Martin-Sanchez, F. (2013) Health outcomes and related effects of using social media in chronic disease management: A literature review and analysis of affordances, Journal of Biomedical Informatics. Retrieved from http://www.sciencedirect.com/science/article/pii/S1532046413000671
Seeman, N. (2008) Web 2.0 and chronic illness: new horizons new opportunities. Healthc Q, 11 pp. 104–108 10, 4
V.S. Helgeson, B.H. Gottlieb (2000) Support groups: Social support measurement and intervention, University Press, Oxford
Van Uden-Kraan, C.F., Drossaert, C.H.C., Taal, E., Lebrun, C.E.I. Drossaers-Bakker, K.W., Smit, W.M., Seydel, E.R. & Van de Laar, M.A.F.J. (2008) Coping with somatic illnesses in online support groups: Do the feared disadvantages actually occur?, Computers in Human Behavior, Volume 24, Issue 2, Pages 309-324.
Wright, K.B., Bell, S.B (2003) Health-related support groups on the Internet: Linking empirical findings to social support computer-mediated communication theory, Journal of Health Psychology, 8 pp. 39–54