I am going to be posting all of my coursework/progress/rants for my Honours 2014 here. If you want to read and keep up to date with what I am doing (because I am clearly going to be at no social events between now and Oct 2, haha) here it is. 🙂
I am open to criticism/feedback/words of encouragement. Have a read and I hope you find what I am looking at as interesting as I do 🙂
Updated statement of intent – Honours 2013. Attached is also my reference list and proposed quantitative survey. And a photo of my work space. For funsies. Look at all of those books **drowns in books** 😛
Now for the serious stuff..
Proposed title: Self Management of Chronic Pain through social media.
Chronic Pain persists for an extended period of time and is usually defined as pain lasting for longer than six months, or pain that persists beyond the expected healing time (Field & Swarm, 2008). Clinically, pain is defined by ‘what the patient states it is’ and then it is up to the physician to determine precisely what the patient means (Jay, 2007). There are a range of different diagnoses a patient could potentially receive when investigating the cause of their chronic pain, including Fibromyalgia, pain in the muscles and ligaments, Chronic Fatigue Syndrome, patient always being tired and Non-specific Neuropathic Pain, pain caused by faulty nerves (Butler & Moseley, 2003); the reasons for the chronic pain are sometimes unable to be defined, and diagnoses are very extensive.
The reality of Chronic Pain for many patients and their families is quite difficult to accept as there may be no cure. It is often possible to improve quality of life, increase function and reduce sense of suffering but often people can feel isolated as Chronic Pain can be a very difficult illness to understand (Cowan, 2011).
Research conducted in Australia found that 17% of males and 20% of females in the country are suffering with Chronic Pain (Blyth, Brnabicc, Cousinsa, Jormd, Marchb & Williamson, 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 (Blyth, et. al., 2001).
The increasing pressures that are facing our health care system can place burdens on patients, some who are have been waiting more than two years to see pain management specialists (Anonymous 2012); there is mounting pressure regarding the importance of effective self-management of Chronic Pain, so that people have access to information and assistance without having to wait until it is too late (Blyth, et al. 2005). It is clear that good self-management is necessary for effective medical care for chronic illness (Von Korff et al., 1997) and social media is seen to be an effective mechanism for this; a study conducted by Professor Jenny Strong states that 21% of people used social media to find out about the pain experiences of others so as to compare it to their own conditions (Anonymous 2012).
Social media, with its ease of access could help sufferers with ongoing support for their condition. Social media closed groups on platforms such as Facebook are increasingly popular for people to turn to for support and information. They 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. Online support groups based on social media platforms have a great 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). As the nature of Chronic Pain is are very diverse, this is an advantage for members of these groups.
Effective self-management is an established therapeutic goal for Chronic Pain (Borkan & Cherkin, 1996) and understanding the extent and nature of daily self-management of chronic pain symptoms is important. A large number of studies in clinical populations have consistently shown that self-management of symptoms and contact with a support network is associated with better outcome (Cohen et al., 2000; Von Korff et al., 1994). 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 (Gottlieb, Maitland et al., 2013) and provide the opportunity for social comparison with peers (Campbell, Phaneuf, & Deane, 2004).
There is the potential for people that suffer with Chronic Pain to feel stigmatized, isolated and disconnected from others. As their illness is so diverse it is often difficult for people to truly understand what Chronic Pain is, unless they have experienced it themselves; why the need for online support groups is so important (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 (Gottlieb, Maitland et al., 2013) 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) and the composition of such groups. My research will aim to uncover what makes a successful online support group for people suffering with Chronic Pain and attempt to see why these types of groups are important. From a communication perspective there have been very few studies looking in to the potential of social media for management of chronic illness, but the popularity of the groups suggests that there is a great need for people to gain this type of support online. This inflated usage indicates that there is a potential for an inherent impact on health status and enhanced quality of life for people with Chronic Pain through engaging in these online environments (Merolli, Martin-Sanchez & Grey 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).
The research process will be undertaken within the closed Facebook Chronic Pain support group, Surviving Chronic Pain https://www.facebook.com/#!/groups/survivingchronicpain/. Data will be collected in two different ways within the group during this research, using quantitative and qualitative methods. A quantitative survey will be posted in the group for a two week period for people in the group to be able to complete. The completion of the survey isn’t mandatory and none of the respondents will be identified through the research. Group members will also be informed of the qualitative study and if they wish to be excluded they will be. This research will require Ethics Approval as is proposed to be undertaken in the two week period from 24th March 2014 – 7th April 2014 inclusively.
The quantitative survey will consist of 10 questions in total made up of Likert scale questions, multiple choice questions (single and multiple response) and a series of closed questions for the respondent to answer. The survey will be created and hosted through SurveyMonkey.com so that it is easy to access and results are able to be collated in a short amount of time. The qualitative aspect of the research will be completed by monitoring the closed group page for a period of two weeks. In that time, data from all of the posts, comments and shares will be collected and analysed through Nvivo, exported and coded to analyse trends, posts content and themes that present themselves within the group.
This research hopes to shed a further light on the importance of support networks for people who are living with Chronic Pain by analysing the way in which the support groups work, the factors of their success and how people use them to help with their condition.
Anonymous (2012). Chronic sufferers seek support online. Australian Nursing Journal 20(1): 8.
Blyth, F. M., March, L M. Nicholas, M K. Cousins, M J. (2005). Self-management of chronic pain: a population-based study. Pain 113(3): 285-292.
Blyth, M.F , Brnabic, A.J.M, Cousins, M.J, Jorm, L. R., March, L. M., Williamson, 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.
Borkan J.M, & Cherkin DC. (1996) An Agenda for Primary Care Research on Low Back Pain. Spine Vol.21(24), pp.2880-4
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
Butler D.S., Moseley G.L. (2003) Explain pain. Adelaide, Australia: Noigroup Publications
Campbell, H.S., Phaneuf, M.R. & Deane. K (2004) Cancer peer support groups do they work? Patient Education and Counselling, 55 pp. 3–15
Cohen M, Nicholas MK, Bland A. (2000) Medical assessment and management of work-related low back and neck/arm pain. Occup Health Safety Aust NZ 16(4):307–17.
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
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
Cowan, P. (2011). Living with chronic pain. Quality of Life Research, 20(3), 307-8. doi: http://dx.doi.org/10.1007/s11136-010-9765-7
Fox, S. (2011) The social life of health information, Pew Internet & American Life ProjectPew Research Center Publications, Washington, DC, USA
Gottlieb, B. H., et al. (2013). “Social Support and Adjustment Among Wives of Men with Prostate Cancer.” Journal of Psychosocial Oncology 32(1): 16-36.
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
Merolli, M., Gray,K., & 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
Von Korff M, Barlow W, Cherkin D, Deyo RA. (1994) Effects of practice style in managing back pain. Ann Intern Med 121(3):187–95.
Von Korff, M., & Gruman, J. (1997). Collaborative management of chronic illness. Annals Of Internal Medicine, 127(12), 1097.
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
The aim of the survey is to better understand use of social media for self-management and what participants perceive to be their most valuable uses.
If you have chronic pain (pain lasting 3 months or more) and are a member of the https://www.facebook.com/groups/survivingchronicpain/ closed Facebook Group we invite you to take our survey.The questions will not be mandatory, giving you the freedom to navigate the survey. You are not required to take the survey, participation is optional.
The questionnaire is short and should take about 5 minutes to complete. Your responses will remain confidential.
2. What age category do you fall into?
18 – 25
26 – 35
36 – 45
46 – 55
3. How long have you been a member of the Surviving Chronic Pain closed Facebook group?
Less than 3 months
3 – 6 months
6 – 12 months
More than 12 months
4. What aspects in your life do you believe that your Chronic Pain has the greatest effect upon? (Please select all that apply)
– Ability to stand for more than 30mins
– Enjoyment of life
– Household chores
– Social activities
– Emotional burden
– Ability to walk more than 1.6km (1 mile)
– Day to day activities
– Ability to work/work at home
– Relationships with others
– Family life
– Ability to sit for more than 30mins
– Ability to take in new information
5. How many times do you post or respond to posts within the group?
Once a month
Once a week
Twice a week
1 – 3 times per day
3 – 6 times per day
7+ times per day
6. How would you rate your overall wellbeing BEFORE joining this Facebook closed online support group?
Very poor Poor Fair Good Very good
7. How would you rate your overall wellbeing AFTER joining this Facebook closed online support group?
Very poor Poor Fair Good Very good
8. Has being a member of this online support group helped in the management of your Chronic Pain?
To an extreme degree
To a moderate degree
Not at all
9. Please rate by selecting what number describes your pain on average
– 0 = No Pain
– 10 = Worst pain imaginable
10. How important is it to have access to support groups, like Surviving Chronic Pain?