Patient participation in dialysis care—A qualitative study of patients’ and health professionals’ perspectives

Abstract Background and objective End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients’ and health‐care professionals’ perspectives. Design This explorative study employed qualitative interviews and content analysis. Setting and participants Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients’ performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed.


| INTRODUC TI ON
Patient participation as a core health-care value has intensified over the last 50 years, supposedly as a result of a collective emphasis on the autonomy of individuals. 1 While the conceptualization of patient participation initially lacked the patient voice, more recent concept analyses have included elements of what patients define as patient participation. [2][3][4][5][6] Thus, there are now opportunities to comprehend what the concept connotes for key stakeholders. As a result, clinicians have better options to facilitate the conditions that are necessary from a patient perspective.
Yet, while health-care professionals and decision-makers often relate patient participation to decision making, [7][8][9][10][11] patients suggest that participation includes a wider range of attributes, including being engaged in self-care, sharing one's experiences of symptoms and treatment with health-care staff, and being involved in planning and decisions vis-à-vis care and treatment. [12][13][14][15][16] With few exceptions, studies that engage with patients in dialysis care to depict patient participation and how it can be facilitated are lacking.
Patients affected by end-stage renal disease (ESRD) experience a multitude of disruptions to their daily lives. Primarily, ESRD entails dialysis on a regular basis, often at least three times a week for about 4 hours per session, most often in a hospital or outpatient health-care service unit if treated with haemodialysis. Patients with ESRD often experience a high symptom burden, both physically and emotionally. Besides dialysis (which is time and energy consuming and often involves travelling), ESRD entails compliance with an altered life, including adaptation to technology alongside particular food and fluid regimens. 17 Thus, living with ESRD more or less necessitates patient engagement-corresponding to participation as in 'being involved in activities in daily life'. 18 To facilitate patient participation, patients and health-care professionals need a shared understanding of the concept. Besides studies on patient participation vis-à-vis self-care and shared decision making, 15,19,20 little is known about dialysis patients' and staff experiences of the concept.
The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health-care professionals' perspectives.

| Design
This explorative study employed qualitative data collection and analysis. 21

| Setting and sample
A region representative of Swedish health care was identified, with seven dialysis units at university, county and local hospitals. All invited units engaged in the study, and written consent was obtained from each unit's department head. Once inclusion was agreed, the manager of each unit was contacted, requesting a time and location for a focus group discussion (FGD). FGDs were suggested over individual interviews to stimulate a comprehensive discussion, informing a conceptualization. 21 The first-line managers were asked to identify 2-3 patients with experience of dialysis due to ESRD, 2-3 health professionals with experience of facilitating dialysis care and  22 and ethical approval was obtained by the Regional Ethical Review Board of Linkoping, Sweden (ID 2017/544-31).

| Procedure
The FGDs were held in a separate room at each of the dialysis units, at a time convenient for the informants. The participants were seated as to encourage a mutual conversation, and the introduction prompted

| Analysis
Data were analysed with content analysis, 23 inspired by text interpretation; 24 the purpose was to appreciate the meaning of patient participation by means of how the stakeholders conceptualize their experience of the phenomenon.
• In the preparation phase, an inductive approach was applied: all FGD texts were read and reread several times to grasp the meaning of the text as a whole. The researchers formed separate texts that informed a mutual script, following discussions.
• In the subsequent structured analysis, data were considered in relation to 12 attributes conceptualized as patient participation by means of semantics, research findings and including patients' conceptualizations. 25 That is, the structured analysis was deductive, employing a contemporary matrix for patient participation, considering both if there were indications that the attribute(s) conveyed what is patient participation in dialysis care, how it is conceptualized in this particular health-care context, and whether there were similarities and differences as to the voices which related to if one participated as a patient, staff or manager.
• To conclude, a comprehensive understanding was formed, incorporating the initial understanding and the structured analysis.
During this final phase, variations between the depictions of patients and health professionals were further illuminated.
The entire analysis was performed separately and collectively, engaging all researchers/authors, with repeated dialogue and reiteration of the transcripts.

| RE SULTS
An overview of the demographics of the participants is presented in Table 1.
The findings are presented by means of describing the naïve understanding, followed by the structured analysis, and concluding with the comprehensive understanding of patient participation.

| Naïve understanding
Patient participation is a complex concept which includes various aspects. Its purpose is to strengthen and promote the patient's health process. In dialysis care, it is preordained for the patient to participate, as the illness requires that the patient takes responsibility. What patient participation signifies to individuals varies between them, but also over time for each individual. Patient participation means taking part in decisions and requiring knowledge transformed into understanding for oneself, the illness and the treatment. It also signifies performing activities related to the treatment of ESRD.
Patient participation incorporates a mutual learning relationship between the health-care professionals (HCPs), and the patient, based on compassion and confidence.

| Being listened to by the health-care staff
Patient participation means being recognized as a person and signifies respect for one's knowledge and experience as an individual living with a long-term illness, in this case ESRD. Patient participation is facilitated by the HCPs being willing to listen to and recognize the patient's sharing of their condition and preferences, thus valuing the patient experience. One patient said: 'And then I noted that it is actually other things than just partaking in decision making. It is about sharing how you are, and being listened to when telling about it' (Patient, Interview 1).

| One's knowledge and preferences being respected
Patient participation means that the ideas that one shares are ac-

| Having conditions for mutual communication
Openness and continuity between the patient and the HCP sustains a confident relationship, facilitating patient participation. The

| Getting explanations as to the procedures performed
Although information is deemed a vital attribute for patient par-

| Phrasing personal goals
To formulate personal goals signifies contributing to patient participation, illustrated as setting goals in relation to one's treatment, such as learning to set up the machine for dialysis or abiding fluid restriction, that is goals perceived as being reasonable and within reach. One patient said: 'You start with dressing the machine and then you advance gradually. And finally you learn self-cannulation too. That is good'. (Interview 3).

| Knowing how to manage symptoms
Dialysis care is a process that facilitates patient participation: it is not

| Performing care oneself
Current technology allows patients to perform parts of or the entire dialysis themselves. A variety of actions can be performed, representing patient participation, such as trimming the dialysis machine with the necessary devices, and/or self-cannulation. This is considered to be advanced patient participation by HCPs, requiring self-confidence and knowledge, the latter acquired by means of attaining information, and engaging in learning opportunities. Although

| Managing self-care
When living with ESRD requiring dialysis, patient participation is constituted by the inevitable self-care, including managing a re- (Interview 6).

| Comprehensive understanding
In dialysis care, patient participation connotes sharing informa-

| D ISCUSS I ON
This study highlights that patient participation is a common concept within the dialysis context, for both patients and staff (including managers imparting the lived experience of stakeholders, we suggest that participants were likely to speak freely, in particular as facilitated by the common introduction of the study purpose and procedure. Further, the notes confirmed that all participants imparted in the discussions.
During the analysis, attributes conceptualizing patient participation were employed, to further investigate the connotations of patient participation depicted by stakeholders in dialysis care. 23 Although we identified that all attributes were conveyed, a potential overlap as to how they are conceptualized in this health-care context was identified. Because the research team members represented a variety of experience of studying concepts, including patient participation, the repeated discussions provided for a critical discourse with regard to the trustworthiness 38 of the analysis. We aimed for the most liable interpretation 24 of the concept, originating from the manifest content of the FGDs, yet recognized the potential to further elaborate on the latent content, signifying an interpretation of differences in significance between the stakeholders. 39 Although this can inform a further understanding, additional studies are probably needed to fully explore attributes of patient participation in dialysis care.

| CON CLUS ION
The results showed that in dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regard to treatment and management, and being involved in the management of one's own health-care treatment and/or self-care activities.
Although an increasing understanding of patient participation is at hand, without a common understanding to denote patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in the everyday encounters of dialysis. Further studies and means to serve a mutual understanding are warranted.

ACK N OWLED G EM ENT
The authors appreciate the time and efforts spent by patients and staff engaging in the focus group discussions.

CO N FLI C T O F I NTE R E S T
The authors declare that they have no conflicts of interest.

AUTH O R S' CO NTR I B UTI O N S
The study was designed by ACE, in collaboration with LÅ, CH and FU. Data were collected by LÅ, CM and ACE. All authors contributed to the analysis and drafting the manuscript. The final version is agreed by all authors.

E TH I C A L A PPROVA L
The study conforms with the World Medical Association's ethical principles and was approved by the Regional Ethical Review Board of Linköping, Sweden (ID 2017/544-31).

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.