‘The hospital and everyday life are two worlds’: Patients’ and healthcare professionals’ experiences and perspectives on collaboration in the kidney transplantation process

Abstract Aim To explore patients’ and healthcare professionals’ experiences and perspectives on collaboration in the kidney transplantation process. Design A qualitative study with a phenomenological‐hermeneutic approach. Method Participant observation and interviews were conducted with 18 patients, together with a focus group with eight healthcare professionals from April 2016–January 2017. The data analysis was inspired by Ricoeur's theory. Results While patients acknowledged that the healthcare professionals were experts, they also requested an everyday life approach to treatment and care, because both professional knowledge and everyday life experiences were needed to manage everyday life. A contrast between patients’ experiences and healthcare professionals’ knowledge was identified, and the empowerment approach could be a way to combine the different perspectives.


| INTRODUC TI ON
This paper presents an explorative qualitative study of collaboration between patient and healthcare professional (HCP) in the kidney transplantation process. The study is part of a larger investigation, in three phases, which is concerned with developing new ways to structure and improve the transplantation process based on patients and HCPs' experiences. The first phase is an identification of needs, through an exploration of experiences. Phase two is the design and development of a telehealth solution, to support the needs identified in the findings from phase one. Finally, in phase three, the telehealth solution is tested in clinical practice (Clemensen, Rothmann, Smith, Caffery, & Danbjorg, 2017). This paper reports from the first phase and includes patients' experiences of the kidney transplantation process from acceptance for transplantation until four months posttransplantation and the HCPs' perspectives on the transplantation process.
In total, 554 individuals were enlisted for kidney transplantation in Denmark in 2018 and 236 patients received a kidney from either a living or a deceased donor (Scandiatransplant, 2019). Kidney transplantation implies survival benefit, higher quality of life, reduced medication, fewer restrictions for patients with end-stage renal disease compared with dialysis and is the treatment of choice whenever feasible (Landreneau, Lee, & Landreneau, 2010;Oniscu, Brown, & Forsythe, 2005). Kidney transplantation, however, requires patients to manage lifelong self-monitoring, medical adherence, careful hygiene and sufficient fluid intake to ensure successful transplantation outcomes. Patients must also be aware of side effects, such as increased risk of skin cancer and infections and in the long-term increased morbidity (Wu et al., 2005).

| BACKG ROU N D
Being a kidney recipient implies living with a chronic disease. As is the case for patients with other chronic diseases, it involves selfmanagement. This means taking responsibility for one's own care and treatment, by taking an active part in managing one's health condition and reacting to symptoms (Simmons, Wolever, Bechard, & Snyderman, 2014). It requires patients to have knowledge about their disease and confidence to manage the chronic conditions based on their knowledge. This kind of patient involvement in treatment and care is significant if self-management is to be successful (Simmons et al., 2014).
A systematic review of literature exploring patients' perspectives has identified the main challenges concerning self-management in kidney transplant recipients (Jamieson et al., 2016). They found self-management is facilitated by a motivation towards adherent behaviour, a feeling of control over one's health, respect for and indebtedness to the donor and gratitude towards the medical team. In contrast, lack of self-management can occur because of insufficient guidance, forgetfulness, distress or other factors that challenge adherent behaviour. It could also be caused by the patients' feelings that everyday life is being overshadowed by disease and by being a patient. Support for and improvement of patients' self-management is significant to a positive outcome in kidney transplantation (Jamieson et al., 2016).
Another study investigated self-management challenges and support needs experienced by kidney transplant recipients (Been-Dahmen et al., 2018). Patients have to become experts in being a kidney recipient, which implies managing treatment, forming a long-lasting relationship with HCPs, adjusting daily life activities, improving self-image and dealing with social and emotional issues (Been-Dahmen et al., 2018). To initiate self-management, patients need a kind of support that is holistic. To date, the focus has been on medical challenges and has overlooked support for the emotional and social challenges.
Furthermore, to initiate self-management, the relationship between patient and HCP has to be built on trust (Been-Dahmen et al., 2018).
Another study exploring kidney recipients and HCPs' experiences finds that a need for a holistic approach to care is acknowledged by both parties to strengthen quality of care in kidney transplantation.
By treating the aspects concerning the whole person and not just the disease, it improves quality of life and minimizes the burden on everyday life (Brett, Ertel, Grimshaw, & Knoll, 2018). There is a need to combine the basic clinical approach, with a focus on the patient-HCP relationship and the kind of aspects that is most important to patients (Brett et al., 2018). Other studies have also focused on the importance of a holistic and individually tailored approach to care and treatment in the kidney transplantation process to develop patients' individual everyday competences (Urstad, Wahl, Andersen, Øyen, & Fagermoen, 2012;Wiederhold, Langer, & Landenberger, 2011).
In summary, these studies show that self-management and the relationship between patient and HCP are significant to the clinical outcome of transplantation and patients' everyday life. Self-management can be supported by an individual approach that addresses the issues most important to patients. Collaboration between patient and HCP can provide knowledge of patient preferences and experiences that can support the individual approach and the patient-HCP relationship. Thus, it is significant that collaboration needs to be explored, as it is an element in improving self-management and thereby improve treatment and care in the kidney transplantation process.

| RE S E ARCH QUE S TI ON
What are patients' and healthcare professionals' experiences and perspectives on collaboration in the kidney transplantation process?  Table 1.
The HCPs who participated in the focus group were doctors and nurses who had various experiences working with kidney transplantation recipients. They all worked at the same transplant centre. The HCPs are presented in Table 2. Inclusion criteria were as follows: HCP with experience of working at the transplant centre. In total, eight HCPs were included: six women and two men, with a mean of 13 years of experience (Range: 2.5-22). None declined to participate.

| DATA COLLEC TI ON
Data were collected by the first author from April 2016-January 2017. The first author is experienced in qualitative research and renal care; however, she is not involved in clinical work.

Participant observation was conducted with inspiration from
Spradley's nine domains, which provided the structure and supported an open-minded approach during the observations (Spradley, 1980). Field notes were written and transcribed immediately afterwards. Participant observation was performed by following three groups of four participants. The first four participants were followed during a three-day, in-hospital evaluation programme to be accepted for transplantation. Four participants were followed on the ward before and after the transplant operation and during the first outpatient consultations. Finally, four patients participated approximately four months after the kidney transplantation at the outpatient clinic.
In total, 150 hr of participant observation was conducted. Field notes contained the researcher's description of the observations and short quotations from informal interviews.

| Focus group
Interaction in focus groups is important. Thus, the aim was to encourage the participants to talk to each other rather than addressing the facilitator (Kitzinger, 1995). The session was planned thoroughly in relation to, for example, seating, refreshments, introduction and the moderator role. Presentations and illustrations were used before each discussion of two topics: 'Patient involvement' and 'patients' experiences of the healthcare system'. An open-ended interview guide was developed to support group reflection and discussion with questions, such as, for example: 'What are your reflections when patients express a need to be involved in their treatment and care? ' (Kitzinger, 1995;Krueger & Casey, 2015). The first author acted as moderator and the participants were four doctors and four nurses. The last author participated as co-moderator, observing non-verbal communication and supplemented with elaborating and clarifying questions. The setting was a conference room at the hospital; however, it was not connected to the department. The focus group lasted two hours and was recorded.
The first author transcribed verbatim the field notes and recordings from interviews and the focus group. The entire research team, consisting of the authors, planned the research process and discussed the findings in the study. This researcher triangulation and the use of various methods enhanced the study validity (Malterud, 2001). Furthermore, the consolidated criteria for reporting qualitative research (COREQ guidelines) were followed in reporting the study (Tong, Sainsbury, & Craig, 2007).

| Ethical considerations
In accordance with applicable ethical rules (Helsinki, 2018), the participants were informed orally and in writing about the study and written informed consent was obtained.

| Data analysis
Text material from transcripts of field notes, interviews and the focus group were analysed as one coherent text. Inspired by Ricoeur's philosophy of interpretation, the analysis was conducted in a dialectic movement between three levels: Naïve reading, structural analysis and critical interpretation and discussion (Ricoeur, 1976 internal validation between the naïve reading, the 'units of meaning' and 'units of significance'-as illustrated in Figure 1 (Pedersen, 1999(Pedersen, /2005Ricoeur, 1976). The software programme NVivo 11 was used to systemize the analysis.
This represents the beginning of a movement from an individual to a general level, which will be further unfolded in the following presentation of the final critical interpretation and discussion of the F I G U R E 1 Example of the structural analysis emerged themes, with the help of theory and research literature. The themes is presented by illustrative quotations representing 'what is said' and will be followed by an interpretation of 'what the text is taking about' representing the meaning of the lived experience as a whole from across the entire data set (Dreyer & Pedersen, 2009;Pedersen, 1999Pedersen, /2005.

| RE SULTS
The naïve reading revealed that the patients and HCPs seemed to have various experiences of collaboration during the transplantation process. From both perspectives, the HCPs seemed to be acknowledged as experts. However, the relationship between patient and HCP also seemed to be influenced by opposing perspectives.
The structural analysis led to two themes related to collaboration: 'Authority -acknowledgement of the healthcare professionals as experts' and 'patients' opposing perspectives in the relationship with the healthcare professionals'. A summary of the findings is illustrated in Figure 2. The themes will be interpreted in the following section. The quotations will be referred to as follows: (I) refers to interview, (F) refers to field note, (FG) refers to focus group, (P) refers to patient and (HCP) refers to healthcare professional. And one HCP said:

| Authority-acknowledgement of the healthcare professionals as experts
They come to the hospital and it is us who decide, for example, you have to come at that time, you will have blood tests taken before that and you must take that medicine, etc.
(FG, HCP3) Reflections on the role of the HCPs in relation to knowledge and treatment showed how both parties acknowledged the HCPs' responsibility and gave them control and power in their professional relationship.
Being an expert in kidney transplantation implied responsibility for the treatment, the functioning of the kidney graft and the patient's health. It gave power to make decisions on behalf of the patients. As one HCP said: (I, P14) The HCPs could inspire confidence in the way they acted due to their experience and professional knowledge. It was significant for the patients because it provided comfort and made them feel safe.
Follow-up was important to monitor the kidney functioning and was also seen as an opportunity to make sure that the patients were F I G U R E 2 Illustration of the findings taking their medication as prescribed. There was an anticipation that HCPs needed to 'keep an eye on' the patients. The HCPs said: The follow-up sends a signal to the patients that, with this, it is important to keep a close eye on you (FG, HCP2) and …if they don't ask for new medication, it can lead to a doubt about whether they are taking it at all.
(FG, HP3) The HCPs' role as experts involved the assumption of authority that they felt was needed in the collaboration with the patients. The HCPs had a lack of confidence in the patients' ability to self-manage, that is to comply with the responsibility that came with being a kidney recipient. HCPs experienced that the patients needed their control and support to accommodate the obligations as a kidney recipient. This established a paternalistic approach to the patients and created an asymmetric relationship between patients and HCPs. The HCPs described the HCP-patient relationship experienced by the patients as a metaphor-that is 'being a family'. One The patients acknowledge the role of the HCP as an expert. In that way, both groups acknowledged the asymmetry of the collaboration, in that the HCP held the power, by keeping the patients safe and confident. This could lead to a contradiction, because the patients had perspectives in the collaboration, other than acknowledging the HCP's role as expert.

| Patients' opposing perspectives in the relationship with the healthcare professionals
Being a patient felt like being subject to others, because it involved having to adapt to the healthcare system by conforming to norms, rules and professional knowledge: …Then an HCP comes in around 6-7 o'clock. They are going to take a blood test, so you have to get up, then you have to get weighed and then you have your temperature taken and it goes on in that rhythm, as is the workflow in a hospital.
(P12, I) It was a transformation from being independent and performing self-management at home into a state where one had to rely on the HCPs' professional knowledge and assessment. One patient expressed: It is really unpleasant to be overruled that others suddenly know best about my body, I have had a hard time with that.
(I, P14) The situation as kidney recipient was new and unknown to the patients, and they could not recognize their body reactions and symptoms, so they found confidence in the HCPs' professional knowledge, as a way to understand the situation. Patients strived towards collaboration with the HCP.
Collaboration was found significant to provide knowledge of patients' experiences, patient involvement and preparation for everyday life at home. Thus, there were opposing perspectives represented of both the HCP as an expert and a collaborative partner.

| D ISCUSS I ON
In this study, the HCPs' role was established as that of the expert, HCPs' recommendations and support. In one study, a patient continued taking his medication despite several side effects and found confidence in the promise of adjustment to a lower dose over time (Low et al., 2017). In another study, patients experienced a need for HCP support, because going through a kidney transplantation had led to change and instability in everyday life (Schmid-Mohler et al., 2014).
In the current study, we found that collaboration between patient and HCP was needed to provide knowledge of patients' everyday life experiences. The significance of everyday life experiences is found in other studies of kidney recipients (Been-Dahmen et al., 2018;Brett et al., 2018;Urstad et al., 2012;Wiederhold et al., 2011).
Going through kidney transplantation was revealed to be challenging for the patients, and they needed support and education. It was important that the approach taken was individual and the education was personally tailored, by way of the HCPs accessing the patients' individual knowledge and education needs. The patients were looking for an approach, addressing not only the disease but also emotional and social challenges. This developed everyday life competences and self-management with minimal burden on the patients' lives (Been-Dahmen et al., 2018;Brett et al., 2018;Urstad et al., 2012;Wiederhold et al., 2011). This shows everyday life experiences, as a significant complement to the professional knowl- to manage life as a kidney recipient, and it is collaboration between patient and HCP that can combine the two perspectives. However, we found the collaboration was challenged by the HCP's role as an expert.
Interactional nursing practice theory, developed by Scheel, Pedersen, and Rosenkrands (2008), contributes to a deeper understanding of the collaboration and perspectives of patient and HCP. It provides a philosophical understanding of the relationship as a dynamic field that contains natural, human and social sciences. Reason and emotion are integrated in the practice theory, which is based on Habermas' theory and definition of three types of reason, with corresponding modes: cognitive-instrumental, aesthetic-expressive and moral-practical. According to Scheel et al. (2008), all three modes are complementary and necessary in interactional nursing. In our study, the HCPs' role was established as an authority due to their professional knowledge and biomedical approach to patients. According to Scheel et al. (2008), this can be explained as a cognitive-instrumental mode of action. It is a result-oriented approach that focuses on the patient's bodily needs and instrumental and technical activities, corresponding with natural science (Scheel et al., 2008). The cognitive-instrumental action is important and necessary for HCPs to provide treatment and care based on professional and biomedical knowl- edge. An asymmetrical relationship between patient and HCP was found in the current study due to the HCPs' professional knowledge, but their power was used with moral responsibility in favour of the patients. According to Scheel et al. (2008), ethics are always present in relations between people, a condition from which, as human beings, we cannot free ourselves. It is important that we act with moral responsibility for one another. This can be explained as the moral-practical mode of action (Scheel et al., 2008). Our finding of opposing perspectives in the collaboration between patients and HCPs arose when the patients requested knowledge and guidance that could be adapted to their everyday lives, in contrast to a general biomedical professional knowledge.
This can be described as an example of Scheel et al.'s (2008) aesthetic-expressive mode of action, where the focus is on reaching a mutual understanding in a dialogue between patient and HCP.
By combining the professional knowledge with the patients' experience, regarding aspects such as family, work and limitations, a person-specific mutual understanding can be reached. This thereby supports the patients to handle their situations in everyday life (Scheel et al., 2008).
The contradictory findings of the importance of the HCPs' professional knowledge coupled with patients' expectations of a more individually adapted knowledge of everyday life can be explained as an emerging contrast between system and lifeworld (Scheel et al., 2008). Habermas describes the society as divided into a system and a lifeworld, each regulated by different actions.
The system is regulated by money and power and human action is impersonal. In contrast, the lifeworld is regulated by understanding each other and communication, and the intention of human action is to achieve a mutual understanding (Scheel et al., 2008).
The contrast in the relationship between patient and HCP arises because the treatment and care take place in the system, but are connected to the patient's lifeworld. To accommodate the contrast, Scheel et al. (2008) argue that HCPs must strengthen the values of the lifeworld in the system where the relationship with patients unfolds. It is important not to focus solely on cognitiveinstrumental knowledge. Otherwise, the system will colonize the lifeworld (Scheel et al., 2008 (Anderson & Funnell, 2010). Thus, the professional knowledge addresses the everyday life experience in the empowerment approach, which we have identified were significant for patients in the kidney transplantation process. This acknowledges the significance of the professional knowledge and everyday life experiences to be used complementarily.

| S TRENG TH S AND LIMITATI ON S
The study is a single-centre study, which calls into question its transferability. However, our findings of patients' experiences seem to be similar to other studies of the kidney transplantation process. Combined with the HCPs' perspective, a new understanding of collaboration in the kidney transplantation process was achieved. The discussion involving interactional nursing practice theory (Scheel et al., 2008) and the concept of empowerment (Anderson & Funnell, 2010) bring new insights into the patient-HCP relationship, which can be related to nursing practice in general.

| CON CLUS ION
Two varying perspectives are present in the collaboration between patient and HCP in the kidney transplantation process, and a contrast is identified between professional knowledge and everyday life experiences. However, the patients and HCPs agree on the HCPs' role as an expert. The contrast emerges between system and lifeworld. The patients experience a lack of involvement of their everyday life perspective; thus, it will be essential to strengthen the values of the lifeworld in the relationship between patient and HCP. The empowerment approach could be a way to strengthen the values of the lifeworld, because, in this approach, the value of everyday life experiences is equated with those of professional knowledge. Thus, the study identifies a need for a new approach in clinical practice to involve patients' experiences in treatment and care, facilitated by collaboration, to support patients' everyday lives during the kidney transplantation process.

ACK N OWLED G EM ENTS
The authors wish to thank the participants in the study. This work was supported by EWII, the Danish Kidney Association, Region of Southern Denmark, Odense University Hospital and the Danish Council of Nurses.

CO N FLI C T O F I NTE R E S T
No conflicts of interest have been declared by the authors.