Of the many interesting sessions at #CSN16 on day 2, the one organized in partnership with the Canadian Association of Nephrology Administrators (CANA) was quite intriguing and unusual. Titled “Challenges in meeting the needs of a diverse CKD population,” it brought together some very different perspectives from patients and health administrators.
The first speaker was Barbara LeGay, who lost her vision and then developed end-stage renal disease. She received a kidney transplant and is now on peritoneal dialysis with a cycler. As a person with vision loss, she highly recommended the principles of universal design. Very simple things that we often take for granted are quite challenging for her. Most information (eg, about an upcoming test or procedure) gets handed as a sheaf of papers, and Barbara will be told to take these papers home and get someone to read them to her (but she lives with a husband who also has limited vision!). Healthcare providers will also paraphrase such material–hardly sufficient to be truly informed consent. Barbara also found the cycler for peritoneal dialysis very difficult to use with her lack of vision and has worked out some innovative gizmos with the help of a “do-it-yourself” engineer. A fascinating method to assist with identifying medications (ie, determining what’s in a particular pill bottle) is the use of something called “ScriptTalk,” which, with the help of radio frequency identification technology, can actually read out details of the prescription. Lastly, due to her disability, Barbara finds that healthcare providers often look to her companions and talk or provide information to them out of ease or convenience. The extra effort needed to involve the patient can result in improved patient engagement and better self-management. Overall, she advocated the principles of information exchange, embracing innovation, and encouragement of patient involvement and independence.
There were two subsequent speakers who spoke about healthcare from an Aboriginal perspective. First up was Howard Vincent, a patient with chronic kidney disease due to diabetic nephropathy, who has had many interesting life experiences. From his perspective–which I am sure is shared by many other individuals–communication is a key aspect. For years, he was told that his kidney was passing protein, though it was never explicitly mentioned that this was bad; therefore, he thought it was a good thing his kidney was removing protein! Although Howard didn’t go into health literacy, it should be mentioned that from this angle, it is an important aspect in patient communication (see a great review of the topic in the Journal here). The big picture, from his perspective, involves chronic disease burden (especially the high incidence of type 2 diabetes and its complications) as another “wave” that is impacting aboriginal populations after colonization, racism, and poverty. Indeed, the renal outcomes in Aboriginal populations are pretty dismal compared to those of non-Aboriginal populations in Canada. For example, younger Aboriginal patients are less likely to get a transplant. There is a higher risk of kidney disease, and despite the geographical distance (most communities are far from hemodialysis centers), the rate of peritoneal dialysis is lower. Progress is being made, slowly but surely. In AJKD, there is a report on research into the attitudes of Canadian First Nations people about organ donation, and the College of Family Physicians of Canada has produced a helpful guide about treating indigenous people. CMAJ has also compiled a collection of other helpful resources and research in dealing with the health of this population. Another important approach, mentioned by Dr. Evan Adams, is to strive towards cultural humility (ie, beyond cultural awareness, sensitivity, and competence).
The session was wrapped up with a talk by a kidney patient who is also an educator, Nicholas Fernandez. He suggested that patients “experiential” knowledge is very valuable, from the meaningful learning that comes from living with the disease. In speaking about patient partnership in research, he recommended keeping in mind Tuckman’s model of group development (forming, storming, norming, and performing), which is very relevant to this area.
Post written by Dr. Swapnil Hiremath, AJKD Blog Contributor.
Check out more AJKD blog coverage of the CSN’s 2016 General Meeting!