The different perspectives of patients, informal caregivers and professionals on patient involvement in primary care teams. A qualitative study

Abstract Background Patient involvement in the decision‐making process, especially for chronically ill elderly patients, has become an important element of patient‐centred primary care in many countries, including the Netherlands. This study openly explores different perspectives of patients, informal caregivers and primary care professionals on patient involvement in primary care team interactions. Methods Sixty‐four qualitative semi‐structured interviews with chronically ill elderly patients, informal caregivers and primary care professionals from various disciplines. Underpinned by a phenomenology approach, this study used conventional content analysis for data analysis. Results Participants have different views of the roles of patients and informal caregivers in the primary care team and thus different expectations of the extent and level of patient involvement. Three challenges impact patient involvement in the team: (a) patients feel misunderstood and less involved that they would like when professionals take control, (b) patients have to balance the conflicting opinions of different professionals and (c) informal caregivers act undesirably as team leaders due to their own view of the level of patient involvement. Discussion and conclusion Patient involvement is formed in complex interactions between patients, informal caregivers and multiple professionals whose perspectives and expectations can be misaligned. Recognizing the value of patients and informal caregivers on the team could help professionals to understand them better and thus limit the likelihood of challenges arising in team interactions.


| INTRODUC TI ON
In the last two decades, health care has moved from a paternalistic professional-centred model towards a patient-centred care model that tailors care to patients' needs, values and experiences. 1-3 Patient involvement, defined as "enabling patients to take an active role in deciding about and planning their care," is part of patient-centred care and increasingly pursued in many countries. 4,5 The fast-growing literature on patient involvement in the decision-making process predominantly focuses on exploring factors that influence patient behaviour and active involvement. [6][7][8] The relational aspects of patient involvement are much discussed in the literature. 6,[8][9][10] Davis et al. show that patient involvement is influenced by the way professionals interact with patients. 8 Moreover, Smith et al. show how relatives and friends (i.e. informal caregivers) play a key role in patient involvement, for example by collecting information on the patient's behalf. 10 Building on such studies, this study contributes to the literature by exploring patient involvement in the decision-making process during interactions between patients, informal caregivers and primary care professionals in primary care teams. From this perspective, patient involvement is not a clear-cut concept, rather, it is coproduced through dialogue and interaction by patients, informal caregivers and professionals in their reciprocal relationships on the primary care team. 6 This makes it important to focus on patient involvement within primary care teams.
The patient can be seen as the single binding factor of the primary care team, as actual care delivery should depend on a patient's specific wishes and needs. 11,12 Various patient involvement models see the patient as an expert with experiential knowledge of their own condition that could complement the knowledge of professionals. 3,13,14 Both patients and professionals often rely heavily on informal care. [15][16][17][18] Informal caregivers (usually close family) are important members of the patient's support system who can provide emotional and everyday illness-related support. 18 However, in some cases, they can also hinder patient involvement, by being overprotective or offering more than the patient desires. 19 Regarding patients and informal caregivers as valid members of the team alongside professionals may contribute to delivering higher quality care. 14 However, many professionals do not regard the patient or informal caregiver as full team members and ignore their vital knowledge. 12,14 Thus patients and informal caregivers sometimes feel left out or unheard. 4,20

| Focus and aim of the study
This study focuses on patient involvement in the decision-making process for chronically ill elderly patients. Given the rapidly rising prevalence of these patients, their involvement is found to be particularly important. 9,21 Usually needing long-term care, elderly patients are often supported by informal caregivers as well as primary care professionals, which lead to frequent interactions between patients, informal caregivers and multiple professionals from different disciplinary backgrounds. 11,15 The study focuses not just on one perspective (e.g. the patient) as is often the case in the literature. 4,14,22 Instead, we analyse the perspectives of all three actors (i.e. patients, informal caregivers and professionals) on their interactions by not merely examining patient-professional or patient-informal caregiver interactions as have been studied before. 6,9,19,23,24 We also explore the influence of interactions among multiple professionals from different disciplinary backgrounds and among multiple informal caregivers on patient involvement.
Thus, the aim of this study was to openly explore the perspectives of patients, informal caregivers and primary care professionals on patient involvement in the decision-making process in primary care team interactions. Our research question is: What are the perspectives of patients, informal caregivers and primary care professionals on patient involvement in the decision making process in primary care teams? It is important to expand the knowledge on the relational elements influencing patient involvement, and the insights gained from this study could be applied to further improve patient involvement interventions in the future.

| Study design
We conducted qualitative interviews to collect the data. Given the aim, a phenomenology approach allowed us to gain a deeper understanding of the subjective experiences of patients, informal caregivers and professionals with patient involvement in primary care teams within their own "life-world," meaning the interactions between patients, informal caregivers and professionals. 25 We followed the consolidated criteria for reporting qualitative studies (COREQ) ( Table 1). 26 This study defines primary care teams as a platform of interaction between patients, informal caregivers and primary care professionals. Research shows that various primary care professionals become team members depending on the course of the patient's illness and suggest that patients and informal caregivers should also be seen as team members. 11,18,27 We did not examine teams as a whole (i.e. one specific patient, his/her informal caregiver and all professionals involved). Rather, we aimed to openly explore the perspectives of the potential "team members" and thus selected interviewees within one of the three participant groups. The elderly are defined as aged 60 years or older in correspondence with the World Report on Ageing and Health of the World Health Organization. 28 We conducted in total 64 interviews with elderly patients (n = 19), informal caregivers (n = 10) and primary care professionals (n = 38) who were as follows: general practitioners (n = 6), physiotherapists (n = 7), (district) nurses (n = 15), occupational therapists (n = 7) and geriatric specialized practice nurses (n = 3). Tables 2-4 provide details of the participants.  16. Description of the sample The participants' characteristics are described in Tables 2-4 Data collection 17. Interview guide A topic list was used during the questions. Some of the questions of the topic list are given in Table 5. Because of the semi-structured nature of the interview, the topic list was used to give guidance to the interviews but was not binding for the content of the interviews.   used. That is, during the interviews with these six, the researcher asked for the contact details of other professionals who would be suitable to take part in this study. These 32 professionals were invited to be interviewed via telephone and email and all agreed.

| Data collection
At the interviews, the professionals were given a letter about the purpose of the study to pass on to patients and informal caregivers who would also be suitable for this study, asking for their consent to be contacted by the researchers. Subsequently, the people who consented were approached by telephone or email and all agreed to take part. Interviews lasted until no new insights were offered (i.e. data saturation).

| Interviews and study procedure
The interviews took place at the participant's preferred location and lasted between 40 and 90 minutes. The informal caregiver of patients 1, 2 and 13 was also present during the interview. The interview began with the researcher introducing herself to the participant, explaining the reasons for doing the research and asking for explicit verbal consent to audio record their conversation. Informed consent was assumed by participants' agreement and completion of the interview.
All participants gave permission to use quotations from the interviews anonymously. At any time, respondents were allowed to withdraw their consent and end the interview. None withdrew their consent.
The semi-structured interviews were conducted in person. The primary researcher developed the topic lists and interview guides and revised these following inputs from the entire research team.
The interviews focused on the interactions in primary care teams and covered three main topics: (a) participants' perspectives on primary care teams and team membership (b) differences in the nature and level of involvement in the team and (c) the role of professionals and informal caregivers in stimulating or hindering patient involvement in the team. All the participants were invited to illustrate their answers from real-life situations. Table 5 provides a selection of questions asked in the interviews.

| Data analysis
The interviews were transcribed verbatim and analysed with Atlas TI.
Given the explorative nature of this study, conventional content analysis was used, with the themes derived from the data and not based on preconceived categories or theoretical perspectives. 29 KD first openly coded the data, whereupon MS, MBS, HB and JP and KD (i.e. the whole research team) performed axial coding, grouping comparable codes into one code. For example, the codes "hesitant to speak up to a professional" and "difficulties sharing feelings with a professional" were grouped together under "patient's ability to speak to professionals." Then, the research team discussed the codebook and performed selective coding, which led to two major themes: (a) who is considered part of the team and (b) challenges in the team that (could) impact patient involvement.

| Trustworthiness
Several steps were undertaken to comply with the five quality criteria for trustworthiness of qualitative research (i.e. credibility, transferability, dependability, confirmability and reflexivity). 30 To enhance the credibility of the results, participants were explicitly encouraged to back their views with concrete examples. Follow-up questions were asked to explore the context of examples and enrichen the data (i.e. prolonged engagement). 30 We used investigator triangulation, meaning that all the authors of the study discussed the axial and selective coding process as well as the analysis and interpretation of the data. 30 Regarding the transferability of the results, the thick description used where appropriate in the Results section provides more insight into the specific context. 30 For example, some results specifically apply to elderly patients with deteriorating cognitive abilities; this is made clear. Regarding the dependability and confirmability of the results, KD made an audit trail, which described in detail all the steps undertaken from the start of the project to the reporting of the findings. 30 Last, to enhance reflexivity, KD kept a diary on the conceptual lens, the assumptions and preconceptions of the researchers and how these could affect the phases of the research project. 30 The whole research team frequently discussed this diary during data analysis meetings.

| RE SULTS
Here, we first report on the participants' ideas on team membership and what their role in the team is or should be. Next, we explore the various perspectives and expectations of the latter that can cause challenges within the team. Although professionals do not explicitly mention the patient as part of the team, most believe that in an ideal world patients should take a leading role in their own care process. Patients should take responsibility for their own health and only consult professionals when necessary. When patients are unable or unwilling to fulfil this role, many professionals view the informal caregiver as a proxy for the patient and expect them to step in and take the lead. Most informal caregivers try hard to involve their family member, even if he or she is less capable of fully understanding their situation. For example, some informal caregivers always have their family member join a meeting with professionals, even if their family member is not able to engage actively and the informal caregiver needs to take the lead.

| Challenges in the team that could impact patient involvement
Our findings reveal that when ideas on the team positions and role divisions do not align, challenges can arise. These challenges impact patient involvement and the role patients can or are willing to play in their care. In the following sections, we discuss these challenges.   For patients, balancing the sometimes conflicting opinions of different professionals can be difficult. Besides challenges that occur daily, as illustrated in the quote above, having to deal with multiple conflicting messages can make patients lose sight of their treatment plan.

| Conflicting ideas amongst professionals in the team
Most professionals feel this applies especially to patients with low or deteriorating cognitive abilities. As the next quote illustrates, this may also lead to negative effects for professionals.
Patients often say, 'The GP said so-and-so'. And then I see that elderly patients are very focused on authority. If I say 'you're allowed to move around' and the patient tells me 'No, the doctor told me not to move'. I can jump high or low, it won't make any difference.
The doctor has a higher position in the hierarchy.

| Informal caregivers as undesirable leaders of the team
Third, challenges can arise when informal caregivers attribute a central role to themselves while patients have different ideas on this.
Some informal caregivers act independently without involving the patient. This could be because the patient is no longer capable of understanding their situation, leaving the informal caregiver in charge.
However, some informal caregivers tend to act on what they believe the patient wants without verifying their thoughts with the patient.
In these situations, informal caregivers could take the lead in conversations with professionals, while the patient would have liked to make his own decisions.
For people who get lots of informal caregiving, I see their informal caregiver wants to set the care goals.
Daughters, especially, bypass their parents. They just say, 'I'd like my mother to walk again', but they don't realize that their mother might not ever be able to walk again. Meanwhile, mother is sitting there, looking at me, like 'walking is not my first priority'.

(Physiotherapist 3)
Also, informal caregivers can be overprotective of family members, which cause them to go against professional advice. Some children believe that their parents have a right to more intensive care either the professionals or the patients feel is desirable or required.
This creates challenges for patients to express their own wishes and also challenges for professionals to deal with this kind of behaviour in informal caregivers. Challenges can be even greater when patients receive support not from one informal caregiver, but a group of them. Often in the parentchild caregiving relationship, elderly patients receive care and support from all their children whose opinions may not always align.

| Challenges within the team
This study found three challenges caused by different perspectives and expectations of patient involvement in the primary care team.
The first challenge is that professionals tend to consider themselves as the team leader and fall into a "repair-reflex," which may lead patients to feel misunderstood and less involved in the team than they would like. Research on self-management of patients finds a similar repair-reflex in home care nurses. 31 The second challenge is that patients need to balance the some- Although aligning the expectations of patients, informal caregivers and professionals could be seen as a scenario worth pursuing, doing so could also mean that a patient would prefer to be less involved than others may think. This notion challenges the underlying assumptions of current health policies in various countries. In Thompson's taxonomy of patient involvement, the desired levels of patient involvement range from autonomous decision making to noninvolvement and the actual level is influenced by the relationship between patients and their caregivers as well as the patient's own capacity (e.g. cognitive ability). 6 From a policy perspective, patient involvement is highly valued and should be pursued. 4,5 Patients are encouraged to make autonomous decisions and noninvolvement is considered undesirable. Paradoxically, however, this decision may also include patients' noninvolvement in their care process, or put differently, a strong desire to place decision making in the control of their informal caregivers and primary care professionals. 31 The question then becomes whether active patient involvement should be imposed on those patients who want to remain passive. From our perspective, patient-centred care implies accepting that patients have distinct preferences in the level and type of involvement, which may change over time and also depend on their current ability. 9 Actual involvement of patients in the decisionmaking process is shaped on the microlevel in teams of patients, informal caregivers and professionals.

| Limitations
Our study on patient involvement looked solely at chronically ill elderly patients and this should be considered when interpreting the results.
However, other research shows that the level of patient involvement also differs in younger and not chronically ill patients and is also influenced by the quality of the relationships with care providers. 6 This suggests that our findings are still generalizable to other patient groups.
Patients and informal caregivers were selected on the basis of recommendations of the professionals and not at random. Because of this, we could have potentially excluded patients and informal caregivers who are less willing or able to speak openly, but who might have had interesting insights into the interactions of the team. However, our patient group differed in their extent of preferred and actual involvement and our informal caregiver group differed in their extent of stimulating or hindering patient involvement. As a result, we were able to examine several types of interactions and relationships between actors, which provided us with a broad insight into the sometimes conflicting perspectives and expectations of all the actors concerned with patient involvement in the team decisionmaking process.
The relatively low number of interviews per respondent group could be seen as a limitation. However, data saturation was reached.
Also, the purpose of our study was to openly explore patient involvement in the primary care team, and so we tried to include as many different perspectives as possible to gain broad insight. For the same reason, we did not select primary care teams as a whole (i.e. one specific patient, his/her informal caregiver and all professionals involved in the care for that patient). Therefore, we cannot draw conclusions on patient involvement in specific teams of patients, informal caregivers and professionals. Future research could focus on exploring patient involved in specific teams.

| Implications for practice
Our study shows that (mis)alignments in expectations of the roles and responsibilities of patients, informal caregivers and professionals influence patient involvement in the team. For patient involvement, it is important that professionals and informal caregivers acknowledge that the patient is indeed a part of the team. To achieve this recognition, a first step could be to clarify what the primary care team does and who its members are. Research shows that primary care professionals, viewing the roles of their professional colleagues, regard primary care teams as fluid entities with an inner and outer layer. 11 Our study indicates that patients may receive informal and professional care from various individuals. Therefore, the patient could be the single binding factor of the team and thus their primary care team should be conceptualized from the patient's perspective. 12 To conceptualize primary care teams from a patient's perspective, the "concentric circles of importance" could be used for the chronically ill elderly. 18 In this method, participants are asked to identify and describe the individuals involved in their care process and to value the importance of their role in various healthrelated activities. 18 This method determines the different layers of the primary care team.
Moreover, previous research on teams has identified role clarification (i.e. understanding the mutual roles and responsibilities of team members) as an important factor that influences the effectiveness of a team. [32][33][34][35] To achieve role clarification, it is important to develop positive interpersonal relationships, based on the opportunity to build trust and respect. 35 In line with other research, we therefore suggest that patients could benefit from a meeting with their informal caregivers and involved professionals especially to discuss their preferences and abilities. 14,20 The presence of patients and informal caregivers at team meetings is shown to be appreciated by patients and professionals. 14 Role clarification is especially important for patients with multiple chronic conditions as a wide range of different primary care professionals could be involved in their care process, each having a different perspective on patient involvement. 11,14 To compensate for hindering factors such as time constraints and geographical distance, role clarification regarding patient involvement could be integrated into existing regular interprofessional care-planning meetings. The use of modern virtual communication technologies, such as video-calling, would especially benefit geographically dispersed patients, informal caregivers and professionals so that these individuals could follow meetings without needing to be physically present. 36,37

| CON CLUS ION
Patient involvement could be enhanced by considering the individual perspectives and expectations of patients, informal caregivers and primary care professionals. In the primary care setting, patient involvement is not up to the individual patient or the result of bi-directional relations between one patient and one informal caregiver or professional. Rather, it is shaped in the complex interactions between patients, informal caregiving and various primary care professionals whose perspectives of patient involvement may diverge greatly.

ACK N OWLED G EM ENTS
Our sincere gratitude goes to all respondents for openly sharing their stories.

CO N FLI C T O F I NTE R E S T
All authors declare to have no conflict of interest.