Chronic Kidney Disease (CKD) â. A Social Media Perspective. Muhammad S. Specialist Biomedical Scientist. The Renal Patient Support Group (RPSG).
Coping with Chronic Illness Chronic Kidney Disease (CKD) – A Social Media Perspective Muhammad S Specialist Biomedical Scientist The Renal Patient Support Group (RPSG) – Facebook and BlogSpot THE RPSG - A ‘PLACE’ WHERE AWARENESS AND RESEARCH MEET
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Background With exception to individuals with severe learning difficulties and neurological illnesses (which of course are devastating in their own right), there has never existed a human being who has not been aware not only of his body but also of his individuality, both physical and spiritual (Mauss, 1998). Human beings are consciously aware of their own lives and, it’s through understanding that awareness of a consciously constructed self is identified (Dunn,1998). A variety of data collection methods can be used in social health research, including traditional methods such as faceto-face semi-structured interviews or non-participant observation. More recently newer methods of data capture to better understand sensitive topics such as online interviews or research into the content of moderated social media support groups, (Muhammad et al. 2014).
Advantages of Online Data Collection and Qualitative Research • Data collection has become increasingly important to nursing and Allied Health Professional (AHP) research. However, the emphasis on Evidence Based Medicine (EBM), together with recognition of the importance of quality of life, has prompted health care professionals of all disciplines to acknowledge the value of qualitative methods (Sackett et al., 1996) which can provide a new dimension of data relating to experiences, attitudes and beliefs in order to inform and develop better health care strategies (Huston and Rowan 1998). • The proliferation of easy access to information and Information Communication Technology (ICT) over the past twenty years has created opportunities for research data to be collected via a number of media unavailable to previous generations of researchers. Qualitative research often uses open-ended data collection methods (Ahern 2005). Definitions of qualitative methods include: The development of concepts which help us to understand social phenomena in natural (rather than experimental) settings, giving due emphasis to the meanings, experiences, and views of all the participants (Pope and Mays 1995).
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Aims The aim of this work was to provide insight on coping with a chronic illness providing a Chronic Kidney Disease (CKD) example collecting qualitative data using social media through several Facebook support groups two questions were asked: 1) Do individuals who are in chronic illness have issues coping (physiologically and psychologically) or 2) Do people with a chronic illness have troubles coping because those around them do not acknowledge their circumstances?
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Design and Methodology Two questions formed a ‘thread’ that was initially posted on the RPSG page between August 2014 and September 2014. The two questions were: 1) Do individuals who are in chronic illness have issues coping (physiologically and psychologically) or 2) Do people with a chronic illness have troubles coping because those around them do not acknowledge their circumstances? Members from several renal Facebook support groups were invited to post comments and experiences in order to collect data through this social media platform. Six groups Facebook groups supported this project. The groups included: 1) The Renal Patient Support Group (RPSG), 2) The British Kidney Patients Association (BKPA), 3) Transplant Survivors, 4) Kidney Disease, Dialysis, Transplant, 5) Kidney Transplant Donors, 6) Recipients and The Transplant Community Outreach The ‘thread’ on ALL groups was monitored and managed by the RPSG. Comments were anonymized and analysed to derive themes
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Coping with a Chronic Illness Research exploring definitions of chronic illness is growing (Riddler and Schreurs, 2001; Gulliford et al., 2002; Unantenne et al., 2013). Summarizing thirty-five chronic illnessbased investigations, (Riddler and Schreurs, 2001) highlight that in order to expand on primary findings, more explicit reflection should be specified to the coping concept for individuals with chronic illnesses.
Results The following number of comments were collected via several Closed Renal Facebook Support Groups • The Renal Patient Support Group (RPSG) – 95 comments • The British Kidney Patients Association (BKPA) – 52 comments • Transplant Survivors – 8 comments • Kidney Disease, Dialysis and Transplant – 7 comments • Kidney Transplant Donors and Recipients – 17 comments • The Transplant Community Outreach – 10 comments
To acknowledge the existence of and study the interplay of multiple views and voices—including, importantly, lay voices (Eysenbach and Till 2001). Selected comments from different Facebook Groups
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“I feel I am in a perpetual state of limbo, which not only causes me anxiety, I also feel I'm caught between wanting my loved ones to acknowledge my condition….I do feel awareness is a huge part of the answer, but also it is such a very complex issue, which creates conflicting feelings in every individual and also their families that I really do think these feelings will always go hand in hand with renal disease or at least arise for most patients, I'm sure it is the same for most chronic illness sufferers, the battle in your mind is an important part of the disease and shouldn't be underestimated”.
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“I am a long tern kidney transplant patient and have always felt I have to be "better" working harder, achieving things but at the same time wanting to be "normal" am so glad I found this group recently as for the first time I am talking to others who "get it". I get so tired of looking well and feeling crap that I have given up trying to explain to anyone...I struggle every day and no one realises so that make me feel alienated, my kidney is failing now and my husband is going to be my donor when needed but that throws up a whole new gamut of feelings and questions in my mind..alienated again as can't discuss them freely.....I am retired now but worked as a nurse for many years until I became too tired to do so really so feel I have contributed but am not sure about now!”
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Themes Identified Using Different Medias/ Individuals to Collect Data in Health Care Research Utilizing the Internet to Collect Sensitive Data Ethical Issues and Confidentiality Issues when considering Support Groups to Collect Qualitative Data Advantages, Disadvantages and Limitations of Conducting Online Research
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“I have lived with renal issues since I was 17 - now 44 and two Tx's in. This one is doing very well and I feel and know that I am incredibly lucky. I learned early on that people tended only to see the stigma of the health issue and so felt that I did not want my identity to be 'the sick girl' or the one with the bad health because this eclipsed the real me. So other than with close friends, I always hid my health issues and even the dialysis. I got on with life and would have been furious if I thought that anyone was ever making any kind of allowance for me. People didn't and do not make allowances and I would not have it any other way” “It does seem that with respect to (1) over time all build or adopt coping strategies and these can be psychological and physiological. Sometimes we would cope without realising we are doing so. With respect to (2) people generally should know more about CKD and they should know this more so in association to other chronic illness since it is a disease that is just as medical/ clinical and affects various components of an individual’s lives. Media does not help to portray the right picture of what CKD is or how devastating it can be either so there is misinformation - it will become more important to provide awareness owing to a living longer population. Misinformation in turn can effect how people with the disease cope and it doesn't help those around the individual's life - they won't understand much better. I think it would be great to have more patient leaders in community and having more avenues to raise effective awareness. That will hopefully be a way to act on point (2)”.
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“I think the onus remains on the individual, with support, such as may be forthcoming, from family and friends, then community to find themselves an acceptable way through life. When these safety nets reach their natural limit then, in an effective society, there should of course be state sponsored support..but that necessarily will only be available to a limited extent. I realise this may sound harsh, but I think there's no alternative option in reality”.
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“I think people it's quite hard for a lot of people to grasp the idea of something being chronic - the amount of times that I hear "oh so you're all fine now?" when I tell them I'm transplanted is unreal, they can't seem to understand that there's no permanent solution and for the rest of my life I will be on daily medication and that things will still be able to go wrong at the drop of the hat; saying that my quality of life a billion time better. And sometimes this can be a little frustrating as some seem to see it as bish bash bosh you're healthy and it's like no, I'll never be 100%. I think that because of other highly publicised medical issues that come with a cure (although also with a chance of relapse) some have got this idea that there is a blanket one-stop-shop cure but there just isn't. Personally. I don't have issues coping as you could either spend your time worrying about things or live your life to the full so that during those times when you are ill and down in the dumps you can reflect on the fact that you made the most of things when you were well”.
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“I personally think that individuals have issues coping if those around them don't understand or even try to acknowledge the individuals circumstances! For me it doesn't matter how many times I try and 'educate' people about my illness they still go ahead and act like world class idiots! I think Its because unless an illness isn't advertised- its not a real illness. If you cant see it, its not a real illness, unless you let yourself go its not a real illness! Im jst sick of having to 'prove' how awful I feel all the time”. “I think it is both. I definitely had trouble coping with loss of independence and my career when I became ill. I was an ICU nurse used to being in control and able to function on my own. Suddenly I was on dialysis, couldn't drive due to low blood pressure and was being dependent on others. I didn't cope well with the physical either. Being too tired or sick to do anything caused emotional issues for me. On the other hand, other people do not tend to see how you are now. I went from independent to needing help a lot. People were not use to that from me. I pushed myself too hard to try to keep up with appearances so people wouldn't see me as a whiner.”
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“As a person with a chronic disease, coping with the disease physiologically is not an option. You either deal with and treat it or really bad things happen. As far as dealing with it psychologically, everyone is different. For me, it was much like a job. There are days when you can't wait to get to work and days when you'd rather go back to sleep. You still get up because that's what you have to do to survive. Instead of saying why me, I say why not me. Everybody has their own cross to bear and this is mine. (2) As for coping with others, I never expected anyone else's sympathy. It's nice to know others care, but I certainly wouldn't want them to dwell on it. After all, it's my disease and I own it”.
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“Yes, just about everyone who is sick with organ failure is very conscious of what is happening to their body and they do have physiologically and psychologically issues dealing with their illness. For your second question, Yes, a lot of people have very real problems coping because spouses, family, and friends can't handle the problems and stress associated with their loved ones having life threatening illness. Families have been torn apart because of coping issues”. “I find in my circumstance that I have both - I have trouble coping with my own illness, and I have trouble with well-intentioned individuals that think because I don't "look" sick, I must be well. It's a difficult road we travel, to say the least, and the longer I'm on that road, the more I have trouble coping. Good question!” “I have everyone in my family and my husband full of the knowledge of dealing with issues afer my transplant and liver disease for 10 years before. It does help if it is acknowledged, but really, day to day, it is just you dealing with your problems and medications and doctors and symptoms. It is what it is, not much changes it or makes it better for me”. “I believe that every patient learns to cope with their illness over time, but it's important to have a strong, stable, loving support system behind them”. “I’ve had trouble coping with my illness for as long as I can remember, even more so now I'm on my own, I've also come across a lot of prejudice, in the last 9 mths, I've had people say I'm a freak or I'm not normal. This has really affected me big time”
Summary Findings indicate that the internet offers novel opportunities for researchers in diverse specialties. It is vital that nurse researchers using online data collection adhere to strict ethical principles and develop new guidelines based on their understanding. Internet-based studies deliver an array of benefits such as contact to explicit, occasionally challenging populations, swiftness of communication, and reduced costs for information production. Web-based research has been found to be practical for interviewing, validating measures and studying sensitive or hard to reach populations. Further comparisons of data collected using traditional faceface and online methods are required.
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Conclusions The assessment of identifying helpful coping strategies should prompt prospective discussion in chronic illness research (Riddler and Schreurs, 2001). Collecting data has entered a new era. Freely available software and a range of IT applications permit new opportunities and greater flexibility in the development of research studies. However, data comparison continues to require a blend of both traditional faceface and online methods. Online data collection for health research includes potential benefits of increased participation of subjects in minority or hard-to-reach groups, investigating sensitive issues, and gathering data from small populations that are widely dispersed, (e.g. people with low incidence conditions or disability), However, it is vital that nurse researchers using online data collection adhere to strict ethical principles and develop new guidelines based on their experience.
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