After attending a two day long Nvivo workshop, made me rethink the size and scope of my project at an honours level. I need to make sure my goals are achievable in a year long time frame (less than a year really) so I decided to narrow the scope of my research by condensing down the amount of pages I am comparing.
Essentially the main idea of my research is that I want to measure the effectiveness of social media pages and closed groups on enhancing the quality of life of people that are suffering with Chronic Pain. I will look at their connection to traditional sources of support, from people that are not necessarily pain sufferers themselves (is. Doctors, pain management specialists, counselors) and I want to compare this to the support that these people are getting from fellow Chronic Pain sufferers and see what is more beneficial.
Once my ethics approval has been cleared (when my application is done) I will send private messages to each of the pages outlined in my proposal, discussing with them my research and what I would like to achieve and my personal connection to Chronic Pain, even though I am not a sufferer myself. I would inform them that if anyone would not like to participate in the study I will happily exclude them.
Below is a copy of the Statement of Intent that I will be submitting. I would appreciate it if you took the time to have a read of it and let me know what you think. (keeping in mind that it is only a proposal and may change slightly in my final thesis :D)
1657 Bachelor of Communication (Honours)
Does Social Media (Facebook) enhance Chronic Pain Sufferers well-being?
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 in providing physical support and can be seen as being a successor of the traditional online support group (Gray, Merolli & Martin-Sanchez, 2013). This represents an inherent shift of the paradigm of online health information seeking, changing 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% of males and 20% 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. 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).
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 and eliminates geographical and physiological constraints. The research will look at Chronic Pain sufferers connection to traditional sources of support, from people that are not necessarily pain sufferers themselves (is. Doctors, pain management specialists, counselors) and I want to compare this to the support that these people are getting from fellow Chronic Pain sufferers and see what is more beneficial.
The research methods in this study will include netnography and discourse analysis, analysing the online communities by adapting research techniques of an ethnographic study conducted online (Belz & Baumbach, 2010) and an analysis of the content and discussions that are posted through use of the Nvivo qualitative data analysis program.
The research will be looking in depth and two different types of Facebook mediums – the page and closed group, looking at the content, frequency of posts and exploring the notion of the Facebook community and differentiation of that community in the closed and open environment. The links to the page and groups for this research will be conducted from are as follows –
Page – Surviving Chronic Pain https://www.facebook.com/SurvivingChronicPain?ref=br_tf
Closed group – Surviving Chronic Pain https://www.facebook.com/#!/groups/survivingchronicpain/
Closed group – Surviving Chronic Pain Caregivers https://www.facebook.com/groups/126591717488390/
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 the community about 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 http://www.sciencedirect.com/science/article/pii/S0747563208000198
Belz, F.M & Baumbach, W. (2010) Netnography as a Method of Lead User Identification. Creativity and Innovation Management 19(3): 304-313
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