We identified four themes that emerged from views of patients’ on or nearing dialysis and their caregivers: gaining knowledge, maintaining quality of life, sustaining psychosocial wellbeing, and ensuring appropriate care. Respondents identified a lack of information and communication between patient and provider as a significant concern, particularly with respect to information about dialysis modality and access. Respondents also expressed significant concerns about their quality of life on dialysis, and expressed a desire to have as much of a “normal” life as possible. They identified a variety of issues that could be addressed by both the health system and health care providers to improve their quality of life. With respect to the health system, there is an urgent need for more psychosocial support, and resources to facilitate travel, particularly for patients on hemodialysis. For health care providers, better communication is key, along with more information on why symptoms happen, how they can best be managed, and information about their future prognosis.
The majority of respondent’s expressed a need for gaining knowledge, which was thought of either as seeking knowledge or lack of information. This need for information was expressed by both dialysis patients and caregivers, echoing previous studies that found that the primary need of families of chronic dialysis patients was information [10, 11]. The timing of when information was presented to patients and caregivers was also a common theme, as was the importance of re-enforcing and updating material previously communicated. The information needs of people as they pass through the various stages of their disease changes over time. A careful consideration of the type of information, including how much information, and at what stage of their illness it is provided, could enable a more efficient transfer of knowledge from health provider to patient. Further, education may alleviate concerns and stress, and stress has been found to affect dialysis modality selection [12]. Providing predialysis education can not only enable patients to choose the modality best suited to them, but helped in their understanding of their disease[13], and may extend their time prior to dialysis initiation [14]. Indeed, previous research has noted that patients need information spread over an extended period of time, with increasing amount of detail and specificity as renal replacement therapy nears [15]. Clinical practice guidelines in the UK specify that information should also be tailored to the stage of disease [16].
Our results also highlighted that transferring knowledge is dependent on the quality of communication among people, echoing the results of a study that found that perceived knowledge of kidney disease was related to the quality of communication [17]. Many respondent comments reflected the need for improved communication between patients/caregivers and health care providers, though increased communication is not merely repetition of the same information. Improving health literacy of patients with chronic kidney disease may be one step in not only ameliorating communication, but may also addressing the information needs of these patients, and how knowledge is retained [18]. Health literacy encompasses communication between patients, their social networks, and providers. Limited literacy has been linked with reduced knowledge, less adherence, hospitalization and death [19, 20]. Finally, many respondents identified the importance of peer influence as a source of information, which may be particularly important since previous studies identified peer support as a means of providing practical information about kidney disease [21]. Peer support may also give purpose to patients already on dialysis by valuing their experiences. As peers have “been there, done that”, they have first hand comprehension of some of the difficulties of treatment, and may be a more influential source of information than clinicians for some important treatment decisions.
We identified the need for more resources for patients and their caregivers, including improved access to travel, more information on how to cook meals within the limitations of the renal diet, more financial support, and more psychosocial care for themselves and their caregivers. Patients on hemodialysis consistently requested more information on how to arrange hemodialysis in other cities, and were concerned with the lack of hemodialysis spots available to enable travel. With respect to meal planning, although there is high-quality information available online to assist dialysis patients and caregivers (http://www.kidneycommunitykitchen.ca/kkcookbook), this information may not be sufficiently broad to address all cultures, tastes or financial means. Further, the number of comments we received requesting additional meal planning resources suggests patients are not aware of existing resources and are still facing barriers with respect to meal preparation. The difficulty of preparing meals to meet the dietary restrictions of those on dialysis is a need that has been met by pre-packaged frozen meals in the United States [22]. Finally, with respect to the need for psychosocial care, the availability of trained professionals for psychosocial care in and out of the dialysis unit, along with support for caregivers, may help relieve the burden of living with this disease. Moreover, since depression is very common [23], resources to help patients prevent and manage depression appears to be a critical need for patients. In addition to professional support, social support has also been found to improve outcomes, including compliance, in those with end-stage renal disease [24, 25] and resources should be made available to help foster important social relationships.
In light of this information, kidney care and dialysis programs, in collaboration with patients and caregivers, should take inventory of what information they provide, the resources available, and how this information is communicated to patients. A careful examination of where a program’s current resources are being directed and whether this aligns with the needs of patients and their caregivers is necessary. Further, detailed information on how to access resources should be made clear and reiterated often. Although the challenges that patients face may vary slightly across the country, there are likely more similarities than differences in many of the views of patients. As such, the development of certain educational resources, including materials and access to online resources, could be a collaborative process across programs, reducing the need for duplication of effort. While these educational materials will not replace face-to-face visits, they may provide helpful information for patients needing further information in between visits. Programs may also explore the idea of shared decision making as an innovative way of communicating and involving patients in critical decisions about their health [26].
Our paper has limitations. We did a qualitative analysis of survey responses, which did not enable us to ask follow-up questions to further explore a theme. Analyzing written responses, without further clarification from respondents, could result in misclassification of certain statements. Though we sought to have a representative national response, our study was limited by having a low response rate from British Columbia and Quebec, and from some patient types (First Nations and the elderly). While we think that many of the views expressed in this report will be common across kidney care programs, the extent of the issue may vary based on geographic regions, health care systems and the availability of local resources. The information provided by this study could be supplemented by local questionnaires to best assess local needs, and inform local program changes.