Views of Canadian patients on or nearing dialysis and their caregivers: a thematic analysis

Participants

Patients, caregivers and health care professionals who care for patients on or nearing dialysis were invited to complete a survey distributed online through partner organizations (Kidney Foundation of Canada), social media (Twitter, Facebook), or a paper-based version available in 10 Canadian hemodialysis centers. The survey was open for 3 months (October 2012 – January 2013). For this analysis, we only analyzed the responses of patients and their caregivers.

Survey

The survey consisted of seven open-ended questions on topics relevant to patients with ESRD (overall management of kidney failure, treatment options, dialysis access options, prognosis, diet, symptoms and lifestyle). These open-ended questions were intended to elicit questions that were answerable by research, for example: “Are there questions about decisions regarding the way in which kidney failure can be treated that you would like to see answered by research?” In previous work, these research questions were prioritized to develop the top ten most important unanswered research questions from the perspective of patients and their caregivers (http://www.cann-net.ca/patient-information/dialysis-research-priorities-survey#results). While the goal of this previous work was to consider respondent statements in the context of developing a list of unanswered research questions, in the current work, we were interested in how the statements reflected respondents, needs, beliefs and feelings. In the survey responses, some patient statements only reflected unanswered research questions, and did not inform views. To eliminate these statements, which were less informative in the context of this work, two reviewers classified all responses independently, and separated these statements out. The remainder of the statements formed the dataset for the content analysis.

Qualitative content analysis

Statements were analyzed by thematic content analysis, a method that enables systematic analysis of the content in communication, such as answers to a survey, and reflects the content of the data set. Thematic content analysis is a method for identifying, analyzing, and reporting themes within data, where concepts or categories are derived from the data in an inductive or deductive manner [6]. These concepts or categories serve to represent the data by providing knowledge and new insights, with the outcome a condensed and broad description of the phenomenon under study [7]. Content analysis goes beyond the summary of the data and involves a qualitative interpretation by the researcher, providing a “vicarious experience” for the audience [8].

A descriptive theme was defined as a subject that captured important data related to end-stage renal disease[9]. Themes were not defined a priori but emerged after the initial readings of the data. Themes were identified as having captured an important element of the views of patients with chronic kidney disease and their caregivers and were not necessarily the most prevalent subjects within the data. Themes were not created to be mutually exclusive, but in order to represent the best conception of the data.

Synthesis of findings

We followed the process outlined by Braun et al. [6] to synthesize the results. The data were first read by one author (LB) several times, to become familiar with the content and generate an initial idea of themes. The thematic content analysis involved three phases: the development of descriptive themes along with the creation of mutually exclusive rules for inclusion; statement by statement coding done independently by two authors (LB & LM); and the organization of the statements into meaningful categories by the same two authors (LB & LM). Any disagreements between the two authors were resolved by consensus, with the input of a third reviewer (BM) if necessary. We defined 4 descriptive themes, which were re-assessed to ensure that they worked with and represented the data. Lastly, a selection of powerful and compelling examples were selected, with context, to represent each theme.

Seeking knowledge/lack of information

Respondents sought knowledge not only about the different treatment options available (either dialysis modality or access), but also wanted to determine which was the “best”, and why, for both their overall health and quality of life. They specifically expressed the desire for a thorough explanation of all options. A caregiver stated: “Yes, I would like to see all of these options thoroughly explained at the very beginning. This is a whole new world for patients and care givers, making it very difficult to make good decisions.” Respondents verbalized that they felt uninformed about many aspects of their treatment and care. A hemodialysis patient expressed: “Again left in dark till things happened, policy seems to be on a need to know. When you start dialysis why don't they warn you about the symptoms of crashing? Not nice not knowing what is happening”. There was a recurring concern regarding symptom management, and respondents frequently voiced that they were unsure of why certain complications occurred (lack of energy, itchiness). They also felt that the lack of information interfered with their ability to cope with and manage these symptoms, as stated by a hemodialysis patient: “Why do we get restless legs, itchy skin and have difficulty sleeping? No one ever explained why nor what can be done”. This lack of information extended to other areas of their disease, including fluid management and diet restrictions. A peritoneal dialysis patient wrote: “More information on why some foods are okay and others aren't. I had to find detailed lists of phosphate containing foods on the internet”.

Respondents also stated that they were unsure about their prognosis on dialysis, wanting to know how long they would need to stay on dialysis, the progression of their disease, as well as their life expectancy. A patient receiving hemodialysis in a clinic expressed: “Generally a summation of what will happen physically as the years pass on dialysis would be beneficial to me as a patient. What should I expect in terms of medical problems and deterioration due to the end stage renal disease”. Lack of information extended to those seeking a transplant as well. A patient receiving hemodialysis in a clinic wanted to know: “At what age, and with what present medical issues does a person with kidney failure become ineligible for a transplant? Persons with kidney failure want to know all about the process of selection regarding a transplant”. One dialysis respondent expressed that they wanted a holistic take on information, stating “We need to be better informed about the side effects of dialysis on your mind as well as your body, such as focus, cognitive ability and lack thereof. Also, how your whole life will change: how you have to live and interact with others and how totally frustrating it can be”.

Communication

In addition to not receiving the information they felt they needed, participants raised concerns about the communication between patient and healthcare provider, specifically in how the information was delivered. “An explanation in layman's terms would be useful”. A hemodialysis patient felt information was not always communicated appropriately. “I started dialysis two weeks ago. There are a number of acronyms used, which I do not understand. How can we improve communication with patients?” This same respondent expressed that he found it “very frightening” when first discussing kidney disease.

Respondents also expressed a desire for improved communication for managing their disease, and being informed. A home hemodialysis patient wondered: “Why can’t the nurses share what’s going on with our blood work and inform us as patients”. In the particular case of diet restrictions, a long term dialysis patient stated: “Just because the patient was told this once at the beginning does not mean they remember. There should be some kind of annual review of the do’s and don’ts as well as product updates”. A respondent receiving hemodialysis in a clinic stated it as follows: “They need to go one step further than just give us a piece of paper saying what you can and cannot eat or drink and explain the consequences of not following a diet and watching what you drink”.

Many respondents verbalized their desire for a transplant, but felt that the selection process and position on the waiting list could be communicated in a clearer manner. Some felt this process was not transparent, perhaps due to a lack of communication on how the process works. “Why do I have to wait so long? Why haven't they made an effort to get me on the transplant list? Will I ever get my transplant?”.

Overall, some respondents voiced that they would like to feel part of the team and more involved in the decision making around their care. This was expressed by a patient receiving hemodialysis in a clinic through the following statement: “I’ve been through being diagnosed and I still see it happening: the nephrologist tells you what you have, the treatment and the diet, but never acts like you’re a part of the team. Why is it that up until the moment you are told the above, you think you have a say in your treatment, but the specialist doesn’t see it that way”.

Timing of information

Respondents also questioned whether information could have been given earlier in the disease process. They felt that had they known the severity of their disease earlier on, they could have taken more action to prevent or delay the progression. Respondents also wanted to know early on about their treatment options for dialysis, given the impact of the decision. One patient wrote, “I feel that the patient should be told earlier about their choices. Also important knowing about how dialysis can affect your life and that of your family, friends, employer, etc. It is very traumatic and life changing”.

For those who had already made a decision about dialysis options, a respondent receiving hemodialysis in a clinic recounted feeling pressure to make a decision and needed more time. “Can you make the whole orientation process much clearer? Also, a strong focus was given to home hemodialysis, which I wasn't comfortable doing. Pushing us, especially those on the senior side, to use home dialysis with that machine is terrifying, even with training. Can you build layers of consulting to ease those of us into our new lifestyle? It may be repetitive but we'd make better decisions in the long run”. Another patient receiving hemodialysis in a clinic recounted his experience as follows: “When I first started dialysis, it would have been very helpful to know about the side effects of dialysis. I believe it would have helped prepare myself and my spouse for the onset of all this stuff. I received very little information when I first started”.

Source of information

Peers appeared to be an important influence for both patients and caregivers on deciding their treatment options. Respondents valued the experience of their peers in the process of choosing their modality and were interested to know how they came to their decision. One caregiver stated: “Indeed it was a very difficult decision to make regarding the topic of which dialysis treatment would be best suited for us. We could have used more info on real people who have done both and what their experiences were and what the pros and cons are. Also the success rate of each and is there any difference or research on who does better on the different treatments”. Respondents also looked to their peers in terms of their care, benchmarking their treatment against others, and wanting to know why there were differences. “How come some people have shorter times [on dialysis] than others, and more frequently during the week?”.

General lifestyle

Respondents most often expressed a strong desire to maintain their lifestyle, prior to the commencement of dialysis, what they commonly referred to as a “normal life”. One respondent receiving hemodialysis in a clinic expressed: “What are the best options for a normal life?”. Respondents also wanted to know how they could plan a life and maintain work while undergoing dialysis, as one respondent phrased it: “How to plan a life and work style that is compatible with staying fit while undergoing dialysis”. One dialysis patient expressed a desire for normalcy and control in her ability to prepare the appropriate foods: “I see cookbooks for people of all kinds of conditions - heart problems, diabetes, gluten intolerance etc. I have never come across a cookbook for kidney patients. Can't some dietitian make one for us?”. Respondents who experienced side effects or complications from dialysis or their illness often described the impact this had on their quality of life. “I've lost my eyesight and leg because of diabetes-how can I have a normal life? My wife is fed up, tired of my problems, how can I make this better? I need her to look after me”.

Freedom to travel

A large proportion of respondents verbalized their desire for freedom to travel and stated that traveling was extremely important in maintaining their quality of life. Respondents identified several barriers related to travel. Limited access to other dialysis centers was one barrier identified by a respondent on hemodialysis: “Can more access to hemodialysis machines be set up so that people who like to travel can get appointments in different parts of the country? It is very difficult to get time to dialyze where we boat and like to camp”. Another respondent identified not knowing how to plan travel while on dialysis and resources available for travel (both personal resources required and those made available by the health system) as barriers. “Can persons on dialysis be provided with a comprehensive and detailed directory regarding travel anywhere throughout Canada, including any special perks or considerations available by public or private services in terms of costs, access, assistance, etc.”. Respondents were also concerned with whether it was safe to travel while dialyzing and any possible consequences traveling had on their health.

Sexual vitality

Respondents expressed the desire for more forthright communication around sexual vitality, emphasizing that sexuality was part of maintaining a normal life for them. A young woman with kidney disease expressed it as follows: “Sexuality is never spoken about. Young patients often have many questions about fertility, sex and how to deal with having a line or catheter and a sexual life”. Respondents, and family members, were especially concerned about how they could maintain their sexuality, either by addressing erectile dysfunction, lack of sexual desire or other challenges to sexuality related to dialysis itself (e.g. femoral dialysis lines). “People are complaining about groin lines and trying to understand how they can still have sex. Sex is very important to any couple. Open communication regarding this topic would be much appreciated. All we need is to be on dialysis and divorced!”.

Support for themselves & caregivers

Respondents were concerned about their access to support for themselves and their caregivers, whether at the start of treatment or after years on dialysis. “How about having a counseling session of encouragement before a patient goes on dialysis because I was terribly afraid and I wanted to run away”. One caregiver expressed a need for psychosocial care. “What do you do about the mental care of a dialysis patient that suffers from depression due to or caused by lengthy treatment of dialysis?”. Respondents were also concerned about their caregivers and the toll the disease took on them, illustrated by the following two quotes from patients on hemodialysis. “What types of things do family members have concerns about but are not voicing? What effect does CKD have on them?”. “My wife left me because I was no longer that strong man she married, she wasn't getting the emotional love she needed and she thought I was going to die. Can more support/documents be made available to the spouses?”. Some described the need for psychosocial support that extended beyond the dialysis unit. “Someone outside of the dialysis unit that is familiar with personal issues of chronic kidney disease other than my family doctor, especially dealing with sleeping and sexuality”.

Overall wellbeing

Respondents emphasized that the lack of quality of life they experienced while on dialysis contributed to feelings of depression or inadequacy. “I cannot make myself breakfast/get dressed/put on socks. My quality of life is very bad but I feel all these symptoms are a part of my life. All I can do is smile and keep doing what I can, but it is very hard”. Many comments reflected the overwhelming and deep-seated impact of dialysis and kidney disease on everyday life. “Without work you are living under the poverty line so are not only dealing with loss of health but now can barely afford to live. Family wants to distance themselves so they won't be reminded that death is imminent and won't feel the pain. Canada has made travel impossible. Most dialysis places don't want dialysis patients from another place, for various reasons; might infect their patients, too much trouble to accommodate. We cannot leave the country unless we are willing to pay for our own dialysis care. We are already destitute financially so that is impossible unless you have money. These kinds of restrictions, along with diet, and overall health add to feelings of depression”.

Quality of care

Few respondents communicated concerns about their quality of care, with many expressing satisfaction with their nephrologists and other members of their health care team. “No questions but very satisfied with all treatment and information by all dialysis staff I have had contact with”. Respondents did question whether their disease could have been diagnosed earlier, and suggested that education of their primary care physician may have led them to being treated earlier. “How do we educate family doctors to test for and refer patients at an early stage, so it is not such a shock when they are told they have kidney failure”.

Care delivery

Many of the views on care delivery expressed by respondents centered around perceived or real constraints on resources that affected their access to care, due to resources at the level of the health system. For example, some respondents perceived that home hemodialysis was a better treatment option, and that this should be offered more. “Why are more people not trained and guided towards self care, peritoneal dialysis or home hemodialysis”. Another example was the lack of availability of all treatment options at all health centres, as stated by one patient receiving hemodialysis in a clinic. “I would like to try the button hole method but because of time and money and the clinic’s part, I have not been able to try it. I’m trying to find a way to preserve the life of my vein”.

Patient resources

As respondents are often limited in their ability to work and earn income, they were concerned about personal costs incurred because of their illness and the need for dialysis, as well as whether one dialysis therapy would incur more expenses to them: “What personal costs could I expect if I chose one [dialysis therapy] over the other?” Several dialysis patients expressed concerns about the impact that medication costs have on their finances, as highlighted by the following two comments. “We need certain medications to deal with kidney failure and dialysis, so why aren't they free?” “Why are some medications covered and others not, for example sensipar? Last year I spent over $20,000 on medications. How does a 18-year dialysis patient survive his co-pay while maintaining their dignity and live with these costs?” Another hemodialysis patient expressed frustration about the lack of financial resources available to them. “Since dialysis patients can't work full-time because it takes time out of your life, why aren't we compensated financially? We need dialysis to survive!”