Ethnographic Research on Information Technologies used by Dialysis Patients
I am 22 and currently on hemodialysis because of total renal failure. Within the first week of starting dialysis, I downloaded five different smartphone applications to assist with my new lifestyle. I had never been informed that the applications were available to help me. If something happens or if I have a question about anything, I immediately turn to my smartphone to find the answer. That answer can be found through a quick online search, a mobile application or even a quick text to a friend who knows more on the subject. This is not necessarily the case for those that are a generation or two older than me. The average age of a dialysis patient is 62 (Burns). This means that not only are the chances that they own a smart phone diminished, their chances of knowing how to operate it and benefit from it in different aspects of their life is even smaller. My ethnographic study explores the reasons why older dialysis patients don’t use information technologies to expand their knowledge and aid in their daily lives.
I draw on over 100 hours of participant observation and 15 interviews to discover why these dialysis patients don’t take advantage of available information technologies. Participant observation is where one embeds their self in with the group that is being observed and includes one adapting to their customs to develop a rapport with the group that is being observed. For this project, I did my participant observation with dialysis patients as they sat through their dialysis treatments, while also going through my own treatment. I interviewed my fellow patients about their use of information technology. While working with these people, I reflected on the following research ethics: the informed consent rules and respecting confidentiality and privacy. The subject of one’s health and healthcare is usually one that is touchy and sensitive and therefore needs to be handled with care. To ensure that I ethically sound, I discussed in great detail the uses of their interviews and where their content would be shared to make sure that they were fully informed. To guarantee that each patients privacy was protected, I gave them the option of amenity by offering to change their names if they did not want their private information to be shared on the internet.
When I began this research, I knew there would be some challenges because of the group that I was researching. It was after my own situation involving dialysis that I decided that these patients and their use of technology would be what I wanted to research. Dialysis patients are usually older and less likely to cooperate with a kid who is asking them about smartphones. Nevertheless, I decided the best way to conduct my research was to do interviews with each of the dialysis patients to achieve the maximum different point of views available. Therefore, I started by conducting a quick survey with each of the patients. For those who had more involvement with technology, I asked more questions to determine why they use their chosen applications. I then reviewed the surveys to determine what is causing their lack of technological use. When I began my research, my question was mainly focused on why dialysis patients don’t use the available technology. I had to adapt it after I began my interviews to what factors play a role in hindering their use of technology. Originally my question was only searching for one answer, but I changed it when I quickly realized that there is no one true reason. I observed that there were many different reasons, and each one was a possible factor in a patient’s life, with age being what I determined as the largest factor.
Through these methods, I learned that age plays a major role in dialysis patients’ lack of use with information technology. I begin my paper by establishing the problem of why dialysis patients are lacking in their use of information technology, drawing on my interview with Ms. Tobias. In the section following that, I step back to reflect on how information technology for dialysis patients is connected to my own interest and biography as a person. Based on my interview with Mr. Lopez, I then show how information technology affects Mr. Lopez, supporting my argument that there are many factors that restrict dialysis patients from becoming skilled at information technologies.. I conclude by showing some additional possible hindrances in their learning of the available technologies.
Dialysis patients must manage their job, family, medications, and dialysis treatment, while also searching for a new kidney. These responsibilities can easily become too much to bear resulting in some areas of their life falling to the wayside, sometimes that area being their dialysis treatments or even their medications. This is where information technology could have a beneficial impact. Smartphone applications are readily available and can greatly assist in managing their busy lives. A few of the possible uses include medication scheduling and reminders, dialysis reminders, easier contact with their physician, monitoring blood pressure, and tracking daily fluid intake. Since the issue is not technology availability we must turn and look at different possible causes behind the dialysis patients’ lack of knowledge. Ms. Tobias is 61 years old and has been doing dialysis for almost 8 years. I chose to do an interview with her after seeing her use her smartphone several times during dialysis. Below is the transcript and analysis from that interview.
Q: Hi, Ms. Tobias, I just have a few quick questions about your use of technology and how it benefits your life with dialysis. The first question is how long have you had a smart phone?
A: Okay, Andrew. Well I have had my iPhone for about two years now. My son got it for me as a Christmas gift.
Q: How long would you say it took you to really understand how it worked?
A: I still don’t totally understand how this thing works! (She points to her iPhone 5 with a pink super protective otter box on it.) I can call, open Facebook, and somewhat text, but all of those other gimmicks I try to not mess around with too much.
Q: Have you ever used your smartphone to assist in any of your dialysis related activities like setting pill reminders or keeping track of your weight and blood pressure?
A: No, I haven’t used it for any of those things. I’m not even really sure how my phone would do that. I have used the calendar to create an event when my dialysis shift changed, but I’m not sure if that counts.
Q: That does count actually, and this will also be the last question. If someone were to show you how to use do a few helpful things like what I mentioned in the previous question, would it actually be useful, or do you think you would not use those new features that much?
A: It would depend on how easy it is to use. But still, even if it is easy to use, I probably wouldn’t use it too much just because I don’t have that much time to be spending fiddling with my phone.
Based on my interview with Ms. Tobias, I was able to draw two conclusions as to why she does not use her smartphone’s applications to assist her. The first conclusion I observed was her lack of adapting. Due to her lack of desire to learn, her age and technology have both moved forward, but in opposite directions. The other conclusion I picked up from our interview was that she was not properly informed of its capabilities. It appears that she does not have a full grasp on the smartphones capabilities which is a result of her unwillingness to learn. More than likely her son has tried to get her to use the phone for more than just being a phone, but it is useless because she has already determined she is uncapable. This is possibly due to the lack of senses involved with using a smartphone. In many ways its disconnected from the rest of the world, making it a device to use to become disconnected. With so much of the world being controlled on that small phone she is missing what was discussed by Dara Culhane. In her chapter on sensing she says,”Smelling the aroma of a particular food may evoke memories and associations of sights, sounds, tastes, touches, people, and stories from other times and other places (Elliott, Culhane, Boudreault-Fournier, Moretti & Kazubowski-Houston 1418).” Although Ms. Tobias is not eating anything, the concept discussed still reigns true; Ms. Tobias is not getting any multisensory input from using the phone. So rather than work with it until she understands it, she has decided to ignore its capabilities almost entirely.
As I mentioned in my opening paragraph, I am very young to be a dialysis patient. I officially started dialysis back in 2014 after I was diagnosed with total renal failure. The phrase I heard a lot of doctors say was, “your new lifestyle”- meaning that from here on I was going to have to adjust the way that I lived my life. So, starting on the 24th of August, I had to start trying to find ways to help myself manage my new lifestyle. One factor that is different from me and so many other dialysis patients is my level of independence. At the age of 22, I am very independent in almost every area of my life. For those that are doing dialysis at much older ages, they are very heavily dependent on their children or grandchildren to remind them of their medications and doctors/ dialysis appointments, and transport them around. I knew from the beginning that I would need to try and manage this new lifestyle on my own, so I began to look up applications and other information that could help me manage this. One of the first applications I downloaded was a medication reminder. This app’s sole responsibility was to inform me when it was time to take my medications and how much to take. I was on a very strict medication regimen because of my very high blood pressure, so missing a dose or two was not an option and was prevented because of the app. The next application I found was one to help me manage my fluid intake. While being on dialysis I was given a fluid restriction, meaning I am only able to drink a certain amount of fluids per day, so I used the application to help me keep track and manage it so that I did not go over my limit. One more application I used very regularly was a health app that allowed me to track my blood pressure readings to ensure that my medication was making the impact it was supposed to. Although I immediately looked to my phone to help manage my life, I could not rely on that soley to ensure that I remained healthy. In A Different Kind of Ethnography Cristina Morettie mentions, “walking … is ‘a way of being in the world’(Elliott et al, 2614).” This statement truly resonated with me because I also turned to outdoor activities to further my connection with the world around me. I began running outside everyday and I would track my progress using an app. This app also let me compare my stats to other and set goals each day for myself. The app worked with the running to further my connection of being in the world.
Another interview I conducted was with Mr. Lopez. Mr. Lopez is 45 years old and has only been on dialysis for 11 months. His age is between mine and Ms. Tobias, making him the representation for the middle-aged generation. The transcript from his interview can be found below after this section. In an article for BMC Nephrology, Diamandtidis and Becker stated that, “several reports show that patients with chronic disease who are empowered with information technology (IT) tools for monitoring, training and self-management have improved outcomes…” (Diamantidis & Becker, ). However true that may be, there are a few obstacles that must be overcome before the patient is truly benefited. One of the first obstacles is the patients; the hospitals and dialysis clinics must convince the patients that these applications and tools will benefit them and help them further their ability to manage their lifestyles. That was one of the initial issues with Mr. Lopez. He did not want to have to rely on an application on his phone to dictate how he would live his life. He was eventually convinced by a nurse that due to his busy lifestyle, using a medication reminder app was non-negotiable.
The next large obstacle is convincing the dialysis companies to empower their patients. The average amount of revenue brought in by a DaVita Dialysis clinic is 4 million dollars annually (Shinkman). If you take that and combine it with the estimated 3,900 locations nationwide dialysis has suddenly shifted from a basic healthcare operation to a healthcare cash cow (Shinkman). This makes it in the clinic’ best interest to keep dialysis patients in their chairs and hooked up to the machines a long as possible. According to John Oliver, some clinics even promote that it is better for them to stay on dialysis than actually get a transplant (Bort). Overall, there must be a mindset shift that says we must inform and provide for these dialysis patients to the best of our ability, which includes informing them of information technology that can benefit their lives and ultimately shorten their time on dialysis. Mr. Lopez was eventually convinced by his hospital, not his dialysis clinic, to start using some applications to help manage his lifestyle. Mr. Lopez got a kidney transplant last week and is doing much better than what he was when he was on dialysis. I believe that due to his age, he was able to be convinced to use the new technology, unlike Ms. Tobias who refused to even listen to her options because she did not want to learn how to use this new technology.
I would like to discuss one more factor that could be preventing dialysis patients from learning new technologies; this issue is application availability. Although a few dialysis patients want to find new technology that is out there, they cannot because the market for dialysis patients is such a niche market. Initial applications were very clunky in design and expensive for the user. This problem is improving because more and more dialysis friendly application are hitting the market. As newer applications that are more intuitive and easier to use are released, more patients will learn about their availability and make them increase in popularity among other patients.
Works Cited:
Berns, Jeffery S., MD. “Hemodialysis in the Older Adult.” Uptodate. N.p., n.d. Web. 3 July 2017. <http://www.uptodate.com/contents/hemodialysis-in-the-older-adult>.
Bort, Ryan. “John Oliver Sees Ills in For-profit Dialysis Centers.” Newsweek. Newsweek, 24 May 2017. Web. 05 July 2017. <http://www.newsweek.com/john-oliver-last-week-tonight-dialysis-609169>.
Diamantidis, Clarissa J., and Stefan Becker. “Health Information Technology (IT) to Improve the Care of Patients with Chronic Kidney Disease (CKD).” BMC Nephrology. BioMed Central, 09 Jan. 2014. Web. 05 July 2017. <https://bmcnephrol.biomedcentral.com/articles/10.1186/1471-2369-15-7>.
Elliott, Denielle, Dara Culhane, Alexandrine Boudreault-Fournier, Cristina Moretti, and Magdalena Kazubowski-Houston. A Different Kind of Ethnography: Imaginative Practices and Creative Methodologies. North York, Ontario: U of Toronto, 2017. Print.
Shrinkman, Ron. “The Big Business of Dialysis Care.” NEJM Catalyst. N.p., 09 June 2016. Web. 05 July 2017. <http://catalyst.nejm.org/the-big-business-of-dialysis-care/>.
