Table 2.
Topic | Challenge | Solution |
---|---|---|
Nutrition | Lack of information about the implications of one’s potassium, sodium, and phosphorus levels being abnormal. Information about nutrition and diet is designed in a one size-fits-all manner: “I’m a vegetarian, they said, ‘Your protein is low.’ So I said, ‘What should I take in protein?’ If I take lentils the phosphorus gets high. So they have no solution for that.” (ID P20) |
- Recipe books - Personalized cooking classes and videos - Nutrition and diet apps - Update diet charts to consider ethnicity and dietary diversity |
Medication | Insufficient details about the side effects of prescribed medications: “I mean, I’d like to know the side effects of the medication that’s going to be anti-rejection.” (ID P22) |
- Verbal and written information about the side effects of medications - Share database of medications that interact with, are contraindicated, or need to be modified for dialysis with family doctors |
Dialysis modalities | Lack of education on the pros and cons of each modality and the care involved in looking after one’s access: “They were pushing me towards peritoneal and I never even knew what both [modalities] were. I didn’t know anything about them, so I just, ok, I’ll do peritoneal.” (ID P2) |
- Information on the most suitable type of dialysis based on a person’s values and lifestyle - Connect with patients who have been through the decision-making process |
Travel aid | The amount of preparation involved in arranging out-of-town dialysis both within and across provinces is perceived as lengthy and bureaucratic: “It’s extremely difficult to arrange that. You have to get so much bloodwork and sometimes they can say no, and that ruins your whole vacation and even going there, it’s hard. It would be nice if it was easier, definitely.” (ID P11) |
- Reserved spot for travelers in units - Better support from social workers to coordinate travel arrangements between patients and units - Better patient histories from physicians to determine medical stability to travel |
Symptom and pain management | Possible symptoms, side effects, and pain management of dialysis treatment is not adequate: “My first dialysis treatment, nobody said not to stand up . . . Well what’s the first thing you do when you get a cramp in your stomach? You stand up. Well, I stood up. Nobody said, sit down, so I passed out cold, in my chair.” (ID P4) |
- Distribute a fact sheet to patients with Frequently Asked Questions - Information on common symptoms and how to manage them, for example, cramps, pruritus, fatigue, nausea, altered taste, restless legs, fluid restriction, and so on. - Information tailored for patients with diabetes and other underlying conditions |
Transplant | Lack of transparency about how the transplant list works and lack of updates regarding where individuals are on the list and how to prepare for transplant: “I had a close friend and two other donors willing to donate a live donor . . . he had phoned and they didn’t get back to him for weeks on end and apparently they didn’t have staffing to return calls and they were very, very slow with the process and all the tests.” (ID P10) |
- Clear information on eligibility criteria to be on transplant list - A road map informing individuals of how long they should expect to be on the list based on blood type along with nutrition tips to prepare for transplant - Timely assessments of potential donors - More information about the national Kidney Paired Donation (KPD) program |