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What does the nurse practitioner mean to you? A patient‐oriented qualitative study in oncological/palliative care

Abstract Aims and objectives To explore what meaning patients associate with their experiences with a nurse practitioner (NP) in oncological or palliative care. Background Care provided by NPs results in high patient satisfaction, mostly related to the assurance of continuity of care, and to receiving information and advice on coping with the disease. Research shows that health care provided by NPs equals the quality of care provided by physicians. Patients may be even more satisfied with care provided by NPs. Because patients’ views have only been examined quantitatively, underlying experiences and meanings remain unclear. Design A qualitative study from a phenomenological perspective. Methods In 2017, seventeen outpatients aged 45–79 years, receiving oncological or palliative care, were interviewed in depth. Data were analysed by Colaizzi's seven‐step method and by the Metaphor Identification Procedure. Results Six fundamental themes emerged: the NP as a human (1) and as a professional (2), the NP providing care (3) and cure (4), NPs organising patient care (5) and the impact on patient's well‐being (6). MIP analysis revealed six metaphors: NP means trust; is a travel aid; is a combat unit; is a chain; is a signpost; and is a technician. Conclusions NPs mean a lot to patients. NPs are valued as reliable, helpful and empathic. Patients feel empowered, at peace and in control as a result of the support, guidance and attention to them as a person as well as to aspects of the disease. Providing expert, integrated care makes patients feel safe and embraced in the NP's expertise. Relevance to clinical practice This qualitative insight into patients’ experiences will contribute to the body of knowledge on patients’ perceptions of the treatment and support provided by NPs. It adds to the further development of the NPs’ profession and education.


| Background
The nurse practitioner (NP) acts at the intersection of care and cure. The NP's tasks and responsibilities stem from the seven core competencies described in the Canadian Medical Education Directions for Specialists (CanMEDS framework): medical expert (the integrating role), communicator, collaborator, leader, health advocate, scholar and professional (Frank, Snell, & Sherbino, 2015;Ter Maten-Speksnijder, Grypdonck, Pool, Meurs, & van Staa, 2014). In daily practice, NPs fulfil a broad range of roles depending on the work setting, the clinical discipline in which they function, the collaboration with the medical specialists, and the organisational policy regarding task allocation and professional development (Ter Maten-Speksnijder et al., 2014).
Research shows that patients overall appreciate the care provided by an NP. In some studies, patients are even slightly more satisfied with the care provided by NPs than that provided by physicians (Broers et al., 2006;Festen, Duggan, & Coates, 2008;Laurant et al., 2008;Ter Maten-Speksnijder et al., 2014;Van Hezewijk et al., 2011). Other studies, which involved not only NPs but also other levels of nurses, do not fully confirm these findings; in these studies, patient satisfaction varied with the context of care (Laurant et al., 2018 in press). From quantitatively oriented questionnaires like the "Patient Satisfaction Questionnaire III" (PSQ-III) (Hagedoorn et al., 2003), it appears that patients are satisfied with NPs' information provision on prognosis and recovery, the time available for consultation, their accessibility, communication skills, and information and support on coping with the disease in daily life (Broers et al., 2006;Laurant et al., 2008;Van Hezewijk et al., 2011). Also, patients perceive a high quality of life when treated by an NP (Broers et al., 2006;Festen et al., 2008;Laurant et al., 2008;Ter Maten-Speksnijder et al., 2014;Van Hezewijk et al., 2011).
Yet, none of these studies gives a complete insight into the underlying experiences of patients and how concepts such as "satisfaction" and "quality of life" are understood. Hence, the question remains what patients really mean by these concepts.
Just what is it that makes them feel satisfied? What is the impact of the extent of accessibility of the NP in daily life? What experiences make patients feel supported by an NP in coping with the illness? And especially, what value is associated with concepts such as availability, information and accessibility? To our knowledge, such ambiguous and emotionally charged concepts have not yet been explored in a qualitative, phenomenological way.
Producing an account of lived experiences in its own terms rather than by preexisting theoretical preconceptions could support further understanding of the NPs' value to health care from the patient perspective.

| Aim
This study aimed to explore what meaning patients associate with their experiences with the treatment and support provided by an NP during oncological or palliative care.

| Design
This study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Tong, Sainsbury, & Craig, 2007).
A qualitative design from a phenomenological perspective was used because this perspective enables to explore interpretations and meanings of individuals' experiences. As Polit and Beck put it: "The goal of phenomenological inquiry is to understand the lived experiences and the perceptions to which it gives rise" (Polit & Beck, 2012, p 495).
The meaning people associate with their experiences with the support of an NP is such a lived experience. To enable participants to recount their experiences as fully as possible, in-depth interviews formed the main data source. Complementary sources were used to enhance understanding of the experiences as lived.
Thus, the participants were also invited to explicate nonverbally what was in their "mind's eye" through symbolic representation using metaphors and pictures. Symbolism provides means of sharing one's experiences in a nonverbal way (Edward & Welch, 2011).

| Sampling and selection procedure
To be able to explore the breadth of nursing and medical care in a population where quality of life is pivotal, a purposive sample of What does this paper contribute to the wider global clinical community?
• Details that empathy, helpfulness, reliability and personal attention to one's disease and quality of life by the NP are highly valued by patients receiving oncological or palliative care.
• Emphasises that backup from the NP means a lot. NPs in oncological and palliative care make patients feel empowered, at peace and in control of the disease and its consequences.
• Provides qualitative insight into how patients' experiences contribute to the body of knowledge on patients' perceptions of the treatment and support provided by NPs, and adds value to the further development of the NPs' profession and education. patients being in either an oncological or palliative trajectory supervised by an NP was recruited from three hospitals in two urban areas in the central Netherlands: one university and two top clinical (teaching) hospitals.
We included Dutch-speaking adults with an oncological illness who were expected to be able to reflect on their experiences. Candidate participants were invited by their NP (eight NPs in total) and received an information sheet containing details of the study. Those who expressed interest in participating were contacted by telephone by the researcher (LvD), who provided further information and answered the remaining questions. Participants signed an informed consent form before being interviewed.

| Data collection
Data were collected by individual in-depth interviews, conducted between June-October 2017. The interviews were guided by an interview guide developed by the authors. This guide was based on various sources: patients' narratives in novels as well as in digital patient platforms, an exploratory talk with a patient, and the authors' expert opinions. It was pilot-tested on a 59-year-old male patient with metastasised kidney cell cancer. This did not lead to any changes. Each interview consisted of three parts: (a) open-ended questions; (b) symbolic representations by metaphors; and (c) association pictures (see Figure 1). These parts are explained in detail below.
Part 1: Each interview started with the same open-ended question: "What does the treatment and support provided by the NP mean to you?" To encourage participants to talk about their experiences and express what these meant to them, additional questions were asked, such as "What were prominent issues during your illness?" "What happened?" "Could you talk about these issues with your NP?" and "What was the impact of this conversation?" In addition, participants were asked whether they missed anything in their contact with the NP and were invited to briefly relate their general experiences with the medical specialist (MS).
Part 2: To enhance our understanding of the underlying experiences, participants were asked to express what the NP meant to them through metaphors (Edward & Welch, 2011). Principally, a metaphor is a symbolic comparison using figurative language to evoke a visual analogy, a way of conceiving of one thing in terms of another (Lakoff & Johnson, 1980/2003Polit & Beck, 2012). Its primary function is understanding abstract, emotional or other experiences (Lakoff & Johnson, 1980/2003. Three types of metaphors are distinguished: (a) structural, (b) orientation and (c) ontological (Lakoff & Johnson, 1980/2003Toren & Olivé, 2011). A structural metaphor is defined as a conceptual domain in terms of another conceptual domain (Beck, 2016;Kövecses, 2010 "personification," nonhuman things are seen as human things (Lakoff & Johnson, 1980/2003Toren & Olivé, 2011).
Part 3: The findings of the first and second parts were further validated by means of presenting a set of 45 "association pictures." The interviewees were asked to select a maximum of two pictures that best visualised their experiences with the NP and to verbally express the meaning of the pictures with respect to the treatment and support by the NP.
The interviews were held at the participants' homes and lasted approximately 60 min. All interviews were audio-recorded.

| Research team
The

| Data analysis
This study employs a phenomenological and interpretive research paradigm.
Computer software Atlas.ti version 7.1.5 was used to manage the data.

| Rigour
To assure trustworthiness of the data analysis, the researcher (LvD) used the following procedures: anonymous transcription of each interview; thick description; bracketing; making field notes after each interview; peer review and debriefing with the senior researcher (MG); and a member check (Holloway & Wheeler, 2002;Polit & Beck, 2012).
T A B L E 1 Colaizzi's seven-step method with inclusion of an additional step (Edward & Welch, 2011;Holloway & Wheeler, 2002;Polit & Beck, 2012) Colaizzi's seven-step method of phenomenological enquiry with the inclusion of an additional step

Four steps of the Metaphor Identification Procedure (MIP)
1. Read the entire text-discourse to establish a general understanding of the meaning 2. Determine the lexical units in the text-discourse 3. (a) For each lexical unit in the text, establish its meaning in the context, that is, how it applies to an entity, relation or attribute in the situation evoked by the text (contextual meaning.(b) For each lexical unit, determine whether it has a more basic contemporary meaning in other contexts than the one in the given context. For our purposes, basic meanings tend to be more concrete (what they evoke is easier to imagine, see, hear, smell and taste); related to bodily action; more precise (as opposed to vague); and historically older.(c) If the lexical unit has a more basic currentcontemporary meaning in other contexts that the given context, decide whether the contextual meaning contrasts with the basic meaning but can be understood in comparison with it.
4. If yes, mark the lexical unit as metaphorical During the data collection period, LvD and MG started with the data analysis. LvD applied steps 2 and 3 of Colaizzi's method to all data. MG performed steps 2 and 3 for three interviews and checked the analysis of four randomly chosen other interviews performed by LvD. Simultaneously with steps 2 and 3, metaphorical expressions were coded as "metaphor" by LvD and MG separately, after which they compared and discussed the statements and determined the meanings. Disagreements were resolved through discussion. Next, steps 4, 5 and 7 of Colaizzi's method were performed through collaboration between LvD and MG. The MIP (step 6) was initially performed by LvD. Through discussion with MG, consensus was reached about the final metaphors. The most selected pictures were identified by counts.
Data saturation was reached after having analysed 14 fully transcribed interviews. To confirm the preliminary findings or find deviating data, three more interviews were held. No deviating data or additional findings were found.
The identified themes, the fundamental themes and the metaphors were also discussed with the research steering board (JP, KV, MA, AvV) until consensus was reached. Finally, a member check took place (step 8): The participants were invited to respond to the findings by completing a questionnaire. The findings were presented to them in a general overview table containing quotes, emerged meanings, themes and fundamental themes.

| Characteristics of the participants
Seventeen persons were interviewed. Their mean age was 63.9 years (range 45-79), and nine of them (53%) were female.
Colorectal cancer (n = 7) and breast cancer (n = 4) were the most common diagnoses. Five participants received palliative care. The onset of the disease varied from 1-5 years ago. See Table 3.
Depending on the intensity and phase of the treatment, the frequency of contact between the NP and the patient differed between once every 2-3 weeks (during chemo) and once every 6 months (during follow-up). Mostly the contact was on a regular basis, which could be deviated from. All patients were supported by the same NP during the whole treatment course. The moment of first contact between the patient and the NP differed: In some cases, it was immediately after diagnosis or surgery even before chemotherapy; in other cases, it was later. Therefore, the duration of contact varied from 1-5 years, with the exception of one patient who had been in contact with the NP for more than 15 years since the cancer was first diagnosed in 2002. See Table 3.

| Fundamental themes
Analysis of the interviews revealed six fundamental themes, composed of 18 theme clusters. The fundamental themes encompass the following: 1. The NP as a human.
2. The NP as a professional.
3. The NP providing care.
4. The NP providing cure.
5. The NP organising patient care.
6. Impact of the NP on the patient's well-being.
See Table 4 for a thematic map on these themes and theme clusters.

The NP as a human
For this fundamental theme, three theme clusters were identified: (a) the NP as an empathic, (b) helpful and (c) reliable person.
As for being empathic, the fact that the NP makes you feel welcome and is happy to talk with you meant a great deal to the respondents: is the situation and is it really true that I don't need chemo? That is something you discuss with your surgeon, but the other side is covered by her.
Regarding personal attention, the NP pays attention to quality of life and personal background. Patients feel understood and seen as being more than "just a number" by the NP who could read them like a book: "I am seen as a human being and not treated as a senior

patient." (ID15)
But it is true that those ten minutes that you're there….Then it really is your fight. And then it is he [the NP] who helps you. And then it will become very personal….Then you feel that it is for you and that you are working on it together. And that gives a good feeling. That in this case you come as P with his wife.
And not as number 365.
"I wanted to see if I would feel better without those tablets, those hormone tablets…. And we were able to talk about that very well. And she [the NP] says: "If you … quality of life… maybe you're going to be all right too. It is not needed at all." She did indicate that. And that made me decide: "Yes, let's just try it." (ID05).

| Metaphors
The MIP analysis showed that participants eventually used two types of metaphors: structural and ontological metaphors. Within these two types, six different metaphors emerged, representing symbolic descriptions of the experiences and attached meanings. Each of these metaphors is described below per main type.

| Type 1: structural metaphor
1. The NP means trust Different participants mentioned how the relationship with the NP is based on trust. They have confidence in the NP's expertise; the NP feels like a warm nest to them; NP is a sympathetic ear, VAN | 597 shows involvement and takes account of the complete picture; and one feels being kept on a leash by the NP.
One person who mentioned this type of metaphor

| Symbolic representation by association pictures
Of the 45 association pictures presented to the participants, the three most selected ones represented the contact with the NP: (a) two people holding hands, associated with "feeling safe, doing it together" (5x); (b) rafting in wild water, representing "fighting the battle together, with the NP in the lead" (3x); and (c) jigsaw puzzle, representing "the NP helps to complete the puzzle" (2x). See pictures 1-3, respectively. Seven other selected pictures were associated with "trust," "feeling safe and protected," "working together," "attention and soothing effect" and the NP representing a "signpost." feeling more empowered, in peace, calm and in control of the disease, and the personal attention which makes them feel understood and being more than "just a number."

| DISCUSSION
Our findings are in line with previous studies reporting that patients overall well appreciate the care of NPs (Broers et al., 2006;Festen et al., 2008;Laurant et al., 2008;Ter Maten-Speksnijder et al., 2014;Van Hezewijk et al., 2011 (2017) found that the total burden of needs was predominately related to help with fear of recurrence, worries of caregivers and fatigue, pain and associated costs, sexuality issues, genetic testing and disease-specific peer support. The exploration of needs of cancer patients in palliative care by Melhem and Daneault (2007) revealed that next to medical expertise, patients need respect and validation of their experiences, need to be heard without judgement and need reassurance. These aspects also mirror the "presence approach" (Baart, 2002). This approach, originated from the Netherlands, is built around the items patience, unconditional attentiveness and receptivity. Practitioners who use the "presence approach" cross domains if the requests for help necessitate this (Baart, 2002). They walk part of the way with their patients and make room for their stories, and are deeply concerned with identity, coping and orientation questions. According to our participants, the NPs concerned seem to possess the competences and skills to realise "skilled companionship" and to smoothly collaborate with other professional caregivers. In all, this results in attention to the broad spectrum of care needs and to the patient's "complete picture," which are pivotal aspects in oncological and palliative care.

| Limitations
Some methodological limitations should be considered while interpreting the results. First, the sample consisted of patients receiving (although diverse) oncological and palliative care only and was heterogeneous in age, time elapsed since the onset of the disease, and level of education. This might hinder the transferability of the findings in this study.
Second, participants were recruited by their NPs, based on the inclusion criteria formulated in the study protocol. Still, they needed to assess whether a potential participant was able to reflect on personal experiences and had the psychological and social strength to take part in the study. This may have led to some selection bias, either in a positive direction (motivated patients with high appreciation for the NP having a greater likelihood of being selected) or in an unknown direction (patients with less ability to reflect might not have been selected, and it is unknown how they value their NPs' care and support). Despite these potential limitations, we have faith in the trustworthiness of our study. The rigour of the data collection and data analysis and the applied steps and methodologies strengthen the value of the achieved insight.
Our findings represent the situation in the Netherlands, in which the NPs act at the intersection of cure and care, blending medical and nursing competencies (Ter Maten-Speksnijder et al., 2014).
Although NPs in the Netherlands have acquired expert knowledge at the internationally acknowledged level of advanced practice nursing (Chan & Cartwright, 2014), their tasks and role perhaps cannot be completely generalised to a wider international context.
To our belief, this is the first study exploring in depth what meaning patients associate with the treatment and support by an NP. Despite the above-mentioned limitations, the qualitative findings importantly add to the body of knowledge on NPs' roles and practices.

| CONCLUSION
Backup from the NP means a lot to patients. The participants in this study-patients receiving oncological or palliative care-valued the NP as reliable, helpful and empathic. They felt empowered, at peace and in control thanks to the NP's support, guidance and personal attention to them as a person as well as to aspects of the disease.
Realising that NPs provide integrated care at expert level made them feel safe and embraced in the NPs' expertise.