Keywords

1 Introduction

Patients have the right to receive information and to participate in decisions regarding their treatment and care (WHO 1994, 2013). Patient participation requires established relationships between patients and health professionals, where they exchange and share information and knowledge, empowering the patients to be able to participate (Cahill 1996; Thompson 2007; Sahlsten et al. 2008). Health literacy is a critical determinant in empowering individuals and enabling their engagement in health and addressing health equity (WHO 2017).

Patient- and person-centred care approaches facilitate patient participation and empowerment (Kitson et al. 2013). Such approaches are important to achieve sustainability in healthcare services (WHO 2017). Improving health literacy in all populations underpins improvements in the Sustainable Development Goals (SDGs), including eradication of poverty and hunger, quality education, and reduced inequalities (WHO 2017; Christie and Ratzan 2019). Health literacy is twofold, and improving health literacy cannot be realised simply through individual actions. It requires health literate–friendly organisations and systems that facilitate improvements in health and well-being for families, communities, and countries (WHO 2017; Christie and Ratzan 2019; Orkan 2019; Sørensen 2019).

Participation means being actively involved in a situation or a matter of importance for those partaking (Oxford English Dictionary 2021). Patient participation and patient involvement are often used synonymously (Cahill 1996; Thompson 2007). Other related terms are patient collaboration, patient partnership, user involvement, user participation, consumer involvement, decision-making, shared decision-making, and empowerment (Arnstein 1969; Brownlea 1987; Cahill 1996; Thompson 2007; Longtin et al. 2010; Vahdat et al. 2014; Castro et al. 2016; Halabi et al. 2020). Patient participation was established as a Mesh term in PubMed in 1978, and there is a great deal of research in the field.

The first framework for citizen participation was developed in 1969 and arranged eight different types of participation in a hierarchy, wherein each type was connected to levels of power. The lowest level is representing non-participation, while the highest level constitutes higher degrees of citizen power and participation in decision-making (Arnstein 1969). Brownlea (1987 p. 605) defined participation as entailing involvement in decision-making processes, in the delivery or evaluation of a service, or simply being consulted on an issue or a matter. Key resources needed for participation to occur are access to appropriate information and knowledge, power, and skills (Brownlea 1987). Although this framework and definition were developed for citizen participation, they have been adapted and applied in developing frameworks for patient participation in healthcare contexts.

Within a healthcare context, patient participation is understood as a mode of social interaction dependent on mutuality between patients and health professionals (Ashworth et al. 1992). Cahill (1996) performed a concept analysis of patient participation within a nursing context. Five attributes were identified in the concept analysis: (1) a relationship between the patient and the nurse must exist; (2) the information, knowledge, and competence gaps between them must be reduced; (3) nurses must release some of their power to the patient; (4) the nurse and the patient must be engaged in intellectual or physical activities; and (5) a positive benefit must occur (Cahill 1996, p. 565). A later concept analysis defined patient participation as an established relationship between patient and nurse based on a surrendering of power and control, sharing of information and knowledge, and reciprocal engagement in an activity (Sahlsten et al. 2008). Cahill (1996) and Sahlsten et al. (2008) have been important contributors to develop the understanding of patient participation in research and nursing practice.

Research on patient participation has developed from describing interactions between patients and health professionals to include the social and structural factors for patient participation (Landstad and Kvangarsnes 2020). Different definitions and theories have been developed to understand patient participation, and extensive research has been conducted to clarify the content of patient participation as a concept (Cahill 1996, 1998; Thompson 2007; Sahlsten et al. 2008; Castro et al. 2016).

A narrative review identified that patient-centred care was dependent on three core elements: patient participation, a relationship between patients and health professionals, and the context of care delivery (Kitson et al. 2013). A concept analysis was conducted aiming to clarify the meaning of the concepts of patient empowerment, patient participation, and patient-centredness. Several similarities were found between the different terms, for example, the balance of power and communication between patients and health professionals (Castro et al. 2016). Halabi et al. (2020) investigated patient participation and the related concepts of patient-centred care, patient empowerment, and patient partnership at the micro-, meso-, and macro levels.

At the micro level, patient participation is characterised by a relationship based on mutual trust, engagement, and open dialogue between patients and health professionals. At the meso- and macro levels, patient participation relied on the structure of the healthcare organisation and system, organisational culture, training, and access to resources (Halabi et al. 2020). Longtin et al. (2010) found that patient participation challenged the paternalistic model in the healthcare system. Patient participation is challenging to achieve in its ideal form, because there will always exist an imbalance in power between patients and health professionals (Angel and Frederiksen 2015). Nurses’ and patients’ preferences for patient participation may be different; often patients experience participation on a lower or higher level than they prefer (Tobiano et al. 2015).

Patient participation can be promoted or hindered by the characteristics of the healthcare organisation and system (Halabi et al. 2020). Within pedagogy, educational researchers, Urban Dahhlöf and Ulf Lundgren, developed the frame factor theory. The frame factor theory addressed organisational conditions that could either facilitate or hinder learning processes. Examples of frame factors are physical and administrative frames, legislation, and curriculums. Characteristics of frame factors are that they are linked to the system level and may be governed by external conditions (Dahllöf 1967, 1998; Lundgren 1972; Vaage 1998).

Frame factors and the frame factor theory have not hitherto been applied in approaches and models to patient participation (Bårdsgjerde 2022). Andrew Thompson and colleagues have made theoretical contributions by developing a taxonomy and integrative approach to patient participation (Thompson 2007; Thompson et al. 2007). Patient involvement is defined as a complex, multifaceted, and dynamic concept, whereas patient participation is a specific form of involvement based on mutual relationships, dialogue, and shared decision-making when appropriate (Thompson 2007; Thompson et al. 2007).

The taxonomy consists of five levels arranged as follows: “non-involvement”, “information-seeking/receptive”, “information-giving/dialogue”, “shared decision-making”, and “autonomous decision-making”. The level of involvement is related to the patient’s power to influence the situation and varies from non-involvement or exclusion to full autonomy. Patient participation is connected to the level labelled “shared decision-making” and “dialogue” and is dependent on a willingness from both patients and health professionals and a two-way communication characterised by openness and mutual respect (Thompson 2007). The level of involvement is contextual, for example, depending on the type of illness, whether it is acute or chronic, and the severity of the condition. Chronic conditions provide better opportunities for higher levels of patient involvement. The level of involvement is also dependent on patient characteristics and may vary according to circumstances and/or over time for the same person in the same context (Thompson 2007).

The integrative approach shows the multifaceted nature of patient participation and consists of three elements: components, levels, and contexts. The components are (1) patients’ contribution to the direction of action, for example, through initiation or response; (2) patients’ influence in defining the problem; (3) patients’ role in the reasoning process, for example, discussing the issue and its possible solutions; (4) patients’ influence in decision-making; and (5) emotional reciprocity between patients and health professionals. The level of involvement often varies within and across these five areas of participation based on the context (Thompson et al. 2007).

Thompson’s et al. (2007) integrated approach may be useful for studying patient participation at an individual level. Several recent studies have applied the model as a theoretical framework in studies on participation related to various clinical contexts. The model is valuable to study interactions, but deficient in identifying frame factors’ significance on patient participation. Integrating frame factors into the model will provide new knowledge about frame factors that promote and hinder participation. This knowledge can be used to strengthen patient participation in clinical pathways.

2 Aim

The aim of this study is to develop a comprehensive model to understand and improve patient participation in health services and research based on empirical research on patient participation and non-communicable diseases (NCDs): cardiovascular disease, cancer, chronic respiratory disease, and kidney disease.

3 Method

3.1 Design

Meta-ethnography was conducted to synthesise qualitative research (Noblit and Hare 1988). This method involves an interpretive knowledge synthesis where the findings of the included studies are translated into each other and often synthesised in the form of an analogy (Noblit and Hare 1988). The approach is appropriate when the aim is to identify and develop new concepts, theories, and/or models (France et al. 2019).

In conducting this meta-ethnography, we have followed the seven phases developed by Noblit and Hare (1988). Throughout the process, we have applied the Meta-ethnography Reporting Guidance (eMERGe) to inform the design and to ensure complete and transparent reporting (France et al. 2019). Carrying out a meta-ethnography is an iterative process even though the description of the phases may give the impression of a linear process (Noblit and Hare 1988; France et al. 2019).

Phase 1 states a rationale of the study, describes the aim of the study, develops the research (review) question, and explains the appropriateness of conducting a meta-ethnography (Noblit and Hare 1988; France et al. 2019). The rationale of the study has been described in the introduction. To structure the literature search, the following review question was defined: How do patients and health professionals perceive patient participation in various clinical pathways for NCDs?

Phase 2 concerns deciding what is relevant, describing the search strategy and search process, and selecting primary studies. The author group has published articles on patient participation in various clinical pathways. Knowledge of the research field was important when assessing and selecting primary studies. Several of the included studies are authored by the authors of this review.

A librarian assisted in developing the search strategy and structure of the literature search in Medline. The following terms were applied in the initial search: patient participation, consumer participation, patient involvement, patient empowerment, and patient engagement. These terms were combined by using the Boolean “OR”. The terms were further combined with the following terms: nurses’ attitudes or perceptions, opinions, views, or experiences; physicians’ attitudes or perceptions, opinions, views, or experiences; patient perspective or attitudes, perceptions, opinions, views, experiences, or preferences; caregivers’ attitudes or perceptions, opinions, views, experiences, or preferences. Combining these terms resulted in 2747 items when the limitations were set to peer-reviewed journals, publication between 2010 and 2023, Danish, English, Norwegian, and Swedish language. These 2747 items were assessed for relevance based on title and abstract. Ninety-five primary research papers were carefully assessed by reading them in full text; 76 articles were excluded, and 19 were included. In addition, we conducted hand searches for articles that did not appear in the database, and another 8 articles were included. The total number of included studies thus became 27. Figure 2.1 shows how the selection of included articles was carried out.

Fig. 2.1
2 flow diagrams. 1. Identify studies via databases and registers. Identify records from Medline. Records screened by title and abstract. Reports assessed for eligibility. Studies included in review. 2. Identify studies via other methods. Identify records by hand search and snow balling. Reports assessed for eligibility. Studies included in review.

Prisma flow diagram

Full size image

Based on the review question and the aim of the study, we developed the inclusion and exclusion criteria, listed in Table 2.1. These criteria were used to assess the items in the literature search to ensure that included primary studies were able to answer the review question. We assessed the methodological quality of the primary studies by applying the “Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups (Tong et al. 2007). Studies that did not meet the requirements for quality were excluded. The 95 studies that were read in full text were assessed based on the description of methodology and method. The studies that were included had a clear purpose/research question, and study participants, the context for data collection and data analysis were described. Furthermore, the results section was assessed, and the included studies have rich and detailed descriptions of results underpinned by quotations.

Table 2.1 Inclusion and exclusion criteria
Full size table

3.2 Search Outcomes and Quality Assessment

Twenty-seven qualitative studies fulfilled the criteria and were included in this literature review. The included articles are listed in Table 2.2.

Table 2.2 Matrix of included studies
Full size table

3.3 Data Analysis

The analysis took place in five steps, phases 3–7, according to Noblit and Hare’s (1988) description. In the third phase, the included articles were read to obtain an overview of the themes and metaphors. Then, in the fourth and fifth phases, we decided how the studies were related by comparing patterns and variations in the results.

During this process, the data were coded based on three themes adopted from Thompson et al. (2007) integrative approach to patient participation, including interactions, level of involvement and clinical context. Frame factors were added as a fourth theme. Frame factors are a theoretical approach from the field of pedagogy and were not originally developed within a healthcare context. Frame factors within pedagogy, consisting of physical and administrative frames, legislation, and curriculum design, focus on organisational conditions that could hinder and facilitate learning processes (Dahllöf 1967; Lundgren 1972). Common to these frame factors is that they are linked at the system level and are governed by external conditions that are difficult to control for individuals (Vaage 1998). Similar frame factors are described in literature on patient participation (Bårdsgjerde 2022), and by analysing and synthesising primary research on patient participation we aimed to identify different frame factors at the meso- and macro level and integrate frame factors as a fourth element. The data analysis may therefore be explained as deductive-inductive (Creswell 2014), where we alternated between these four themes and the results of the included primary studies. In the sixth and seventh phases, the results from the included studies were synthesised and written in full, illustrated by suitable quotes from the primary studies.

4 Results

In the qualitative meta-ethnography synthesis, 27 studies were included. The results are presented in four themes: frame factors, interactions, level of involvement, and clinical context.

4.1 Frame Factors

Short and fragmented hospital pathways often led to a lack of time and continuity in the patient-health professionals’ communication (Bårdsgjerde et al. 2019, 2020, 2022). These frame factors often posed challenges to patient participation:

First, they are admitted, then they go to the catheterization laboratory and then to the intensive care unit until the evening before they come back to the cardiac ward. And often, the next day, they are discharged (Bårdsgjerde et al. 2020).

Checklists for patient information and involvement across professions and departments were presented as a solution to solve these challenges (Bårdsgjerde et al. 2020, 2022).

Lack of time, continuity, and resources are mentioned as barriers to patient participation in several of the included studies (Höglund et al. 2010; Cohen and Botti 2015; Bårdsgjerde et al. 2019, 2020, 2022; Andersen-Hollekim et al. 2020, 2021a; Landstad et al. 2023). Lack of time, continuity in care, and facilities such as room for private conversations were mentioned as obstacles to patient participation in hospitals (Höglund et al. 2010; Cohen and Botti 2015; Svavarsdóttir et al. 2015; Bårdsgjerde et al. 2022). Frame factors such as time and continuity in care change due to clinical circumstances. In cardiac rehabilitation programmes, health professionals stated that they are provided with better frame factors to facilitate patient participation (Bårdsgjerde et al. 2020, 2022). Illustrated by a quote from one physician:

After all, patients with MI need cardiac rehabilitation programmes with follow-up over time, because it is all about long-term changes (Bårdsgjerde et al. 2022).

Acute situations often require immediate medical response and decisions in accordance with recommended clinical guidelines (Höglund et al. 2010; Kvangarsnes et al. 2013a; Andersen-Hollekim et al. 2019; Bårdsgjerde et al. 2020, 2022). Health professionals in cardiac care conveyed that standardised recommendations and clear guidelines for acute treatment were often prioritised over patient information and participation in the acute phase (Bårdsgjerde et al. 2020, 2022). Patients’ experiences with standardised cancer patient pathways have shown similar findings (Thaysen et al. 2019; Andersen-Hollekim et al. 2021b). From a patient perspective, these pathways seemed to be based on evidence-based knowledge, not requiring patients to be involved in decisions. This is illustrated by the following quote: “It feels like someone has figured out a clever way to do this, and it is thus reasonable to follow this way” (Andersen-Hollekim et al. 2021b). Standardised cancer care pathways led to predictability and safety for the patients.

Tensions and ethical dilemmas arise in the health professional-patient relation in balancing legislated rights, evidence-based healthcare and recognising patients’ preferences and values (Aasen et al. 2012c; Kvangarsnes et al. 2013a; Jerpseth et al. 2018; Andersen-Hollekim et al. 2019; Bårdsgjerde et al. 2020; Tarberg et al. 2020; Andersen-Hollekim et al. 2021a; Bårdsgjerde et al. 2022; Tarberg et al. 2022). Health professionals experienced difficult situations during end-of-life care, when elderly and frail patients decline lifesaving treatment such as haemodialysis or percutaneous coronary interventions (PCI) (Aasen et al. 2012a; Bårdsgjerde et al. 2020). This quote illustrates how ethical dilemma may arise between medical knowledge versus patients’ preferences: “[…] … It is a treatment offer, but he gets overridden […] We become people of power who dispense our knowledge, without listening to the patient” (Aasen et al. 2012a). Ethical dilemmas often arise in exacerbation of COPD (Kvangarsnes et al. 2013a, b). Nurses have conveyed that they had experiences with using persuasion during acute treatment: “It happens that you have to use a lot of persuasion. Sometimes I’ve felt that this has been next to using force” (Kvangarsnes et al. 2013a). Within palliative cancer care physicians working in hospitals often experienced that demands for efficiency led to ethical challenges as it hindered them in providing enough time for communication with patients and relatives (Landstad et al. 2023).

Interprofessional collaboration between health professions was emphasised as an important frame factor in several studies. Interprofessional teams, that work together, could contribute to ensuring patient involvement and provide care in line with the patient’s needs, wishes, and values (Aasen et al. 2012a; Andersen-Hollekim et al. 2019, 2021a; Bårdsgjerde et al. 2020; Tarberg et al. 2020; Bårdsgjerde et al. 2022; Tarberg et al. 2022).

Patients in need of healthcare services from different departments have highlighted that departments were not coordinated (Andersen-Hollekim et al. 2020). In the palliative care setting, it is important to convey to patients and their family caregivers whether it is the primary or specialist healthcare services that are responsible for the patient’s treatment (Tarberg et al. 2022). However, a study from the family caregivers’ perspective showed that they often were uncertain about who was responsible for the medical treatment: “I thought it was the physician in the palliative team or in the cancer unit who was in charge and not the family doctor” (Tarberg et al. 2019). The same study revealed that family caregivers often waited too long before they contacted health professionals when the patient’s condition altered (Tarberg et al. 2019).

In several studies, health professionals shared reflections about their role as professionals and how the role could influence the level of involvement (Andersen-Hollekim et al. 2019, 2021a). This is illustrated by a quote from a nurse working in a haemodialysis unit:

I think we have to discuss it. Change the framework. We cannot do things the way we always have … We work quite traditionally. We are the nurses and they are the patients (Andersen-Hollekim et al. 2019).

Interviews with nephrologists revealed that they preferred that the patients were involved in deciding dialysis modality in ample time before initiation. The nephrologists described two different approaches: informed choice and shared decision-making. In the informed choice approach, health professionals provided patients with sufficient information to make a decision themselves, while in the shared decision-making approach, the physicians acted as supervisor, guiding patients towards a choice through dialogue based on the patients’ preferences and values (Andersen-Hollekim et al. 2021a). These examples provide an insight into how organisational culture and structure may influence patient involvement. The study conducted by Årestedt et al. (2019) found that the onset of acute dialysis is a point when patient participation is limited, yet patients with a pathway where the illness has manifested gradually may be involved in planning the onset of dialysis.

Health personnel talked about health literate–friendly organisations that strengthened the patient’s health literacy and participation in treatment. Studies suggested that some patients were able to administer their own dialysis if they learned how to cannulate the fistula, set up the machine, and run the dialysis session (Årestedt et al. 2019; Andersen-Hollekim et al. 2021a). To enable the patients to participate in their treatment and care might decrease health costs and save staff resources (Andersen-Hollekim et al. 2021a). Another example, illustrating health literate–friendly organisations, is the use of advanced care plans (ACP) in palliative care. Physicians considered ACP as a tool to open and good dialogue including patient and family caregiver’s future expectations and their thoughts regarding participation. Patient autonomy was highly emphasised in this process: “It is the patients who own this process” (Tarberg et al. 2022). Patients have expressed that knowledge about how the health system is organised makes it easier for patients to participate (Cohen and Botti 2015).

Several of the included studies highlighted that family caregivers also need information to improve their health literacy and involvement in the patients’ treatment and care (Aasen et al. 2012b; Bårdsgjerde et al. 2020, 2022; Tarberg et al. 2020; Tarberg et al. 2022; Landstad et al. 2023). Family caregivers in palliative care experienced the terminal phase as difficult, as they lacked information about what lay ahead and what to expect in this phase of the pathway (Tarberg et al. 2019). Patients have also reported that the involvement of family caregivers facilitated their own participation in care and treatment (Cohen and Botti 2015).

4.2 Interactions

Information has been highlighted as an important prerequisite for patient participation (Cohen and Botti 2015; Ibrahim et al. 2019; Lin et al. 2019; Årestedt et al. 2019). Two-way communication is essential, from the health professionals to the patient and vice versa (Lin et al. 2019; Årestedt et al. 2019). Balancing the amount of information has been identified as crucial in several studies (Cohen and Botti 2015; Ibrahim et al. 2019; Årestedt et al. 2019; Netsey-Afedo et al. 2020; Bårdsgjerde et al. 2022). The patients in one study emphasised that the massive flow of information usually left them with no time for reflection (Netsey-Afedo et al. 2020). The terms and language used in information provided by health professionals must be adapted to the patient’s level of health literacy (Cohen and Botti 2015; Ibrahim et al. 2019). As illustrated in the following quote: “You have to ask for more information, then you get bombarded with information but not in layman’s terms immediately followed by ‘any questions?’” (Cohen and Botti 2015).

Several of the included studies provide examples of how patients participate in interactions in various phases of clinical pathways. Patients with renal failure were not involved in deciding whether to start dialysis or in the choice of dialysis options, yet they often were involved during dialysis sessions regarding treatment decisions as how much fluid should be removed and the time spent in dialysis (Årestedt et al. 2019; Andersen-Hollekim et al. 2020).

The studies provide examples that emphasise the importance of interaction through emotional reciprocity in care and treatment. Emotional reciprocity is important in situations where involving patients and family caregivers in medical decisions may not be appropriate (Bårdsgjerde et al. 2019; Bårdsgjerde et al. 2020; Tarberg et al. 2020; Bårdsgjerde et al. 2022; Tarberg et al. 2022). In acute and life-threatening situations, health professionals have to take control and do the best for the patient: “They don’t know what’s best for them” (Kvangarsnes et al. 2013a).

Patient participation is facilitated through mutual relationships built on trust and respect where the patients are included in the care, listened to, and respected (Cohen and Botti 2015; Svavarsdóttir et al. 2015; Ibrahim et al. 2019; Lin et al. 2019; Årestedt et al. 2019). Patients have expressed that they wish to discuss existential issues with health professionals. Patients being diagnosed with serious illnesses, such as cancer, experienced that the health professionals did not show interest in knowing about their feelings or existential issues (Netsey-Afedo et al. 2020). In palliative care, trust, empathy, and attention were important, and nurses expressed that they emphasised creating a space for dying (Tarberg et al. 2020). Physicians highlighted that in palliative care information meeting the patients’ and family caregivers’ emotional needs is valuable: “Getting cancer is terrifying and dying is difficult; we all want to live” (Tarberg et al. 2022).

Schildmann et al. (2013) identified that whether patients desired to be involved in treatment decisions at the end of life varied. Health professionals have experienced that it is important to involve patients with COPD in the final stage of treatment decisions. This may lead to a dignified end of life for these patients as illustrated by this dialogue from a focus group with nurses (Kvangarsnes et al. 2013a):

  • N7: I have experienced it, but as a wish expressed in a calm and quiet phase [of the disease].

  • N8: So, then it was palliative and not curative treatment?

  • N7: Yes, and it was all very fine and very dignified, with the family around and a grandchild [performing a] song. And it all turned out to be a fine way of ending life and, in fact, a good memory for the family in the time after.

  • N10: Yes, but it is so important that this is clarified in advance.

  • N7: Yes.

  • N9: Yes, and that it is actually patient participation.

A study revealed that patients in late stages of COPD rarely were involved in decisions regarding their care and treatment. Some of the patients expressed that they wished to discuss the burden versus the benefit of the treatment with health professionals: “Nobody ever talked to me about the disease or the prognosis. Last year I was hospitalized ten times; I tried to talk to the doctors and the nurses, but nobody seemed to want to have such a conversation, so I have given up and stopped asking” (Jerpseth et al. 2018).

4.3 Level of Involvement

The studies showed that the level of involvement varied in different phases of the clinical pathways. Trust has been identified as important and may reduce the demand for patient participation in acute and life-threatening situations (Kvangarsnes et al. 2013b; Bårdsgjerde et al. 2019, 2022; Netsey-Afedo et al. 2020).

Health professionals acting with a paternalistic approach in acute situations, which in this case means acting with professionality, being calm, and taking control of the situation, is important for patients to feel safe and trust (Höglund et al. 2010; Kvangarsnes et al. 2013a, b; Bårdsgjerde et al. 2019, 2020, 2022). In addition, to provide patients with short and precise information seems to increase trust in health professionals:

Even if it was intense situations in the beginning, the people were calm and said what was necessary to say. I think that the way you are met is important in these situations, that they are calm and show that they have control. (Bårdsgjerde et al. 2019)

Studies have shown that trust in health professionals often reduce patients desire to participate in shared decision-making, especially regarding treatment (Kvangarsnes et al. 2013b; Schildmann et al. 2013; Ibrahim et al. 2019; Netsey-Afedo et al. 2020; Andersen-Hollekim et al. 2021b). Taking part in decision-making led to insecurity and the patients did not feel competent to make medical decisions (Ibrahim et al. 2019; Andersen-Hollekim et al. 2021b). The patients wanted to be involved in logistics such as time scheduling and choice of hospital for treatment (Schildmann et al. 2013; Andersen-Hollekim et al. 2021b). Involving patients and their relatives in decisions about medical treatment choices has been expressed as challenging by physicians in palliative cancer care. In such situations, the patients and relatives lacked knowledge and needed experienced physicians to make these decisions and protect them from difficult choices (Landstad et al. 2023).

Health professionals perceived that increased health literacy and involvement have a positive impact on adherence to treatment and lifestyle changes to improve health and well-being (Höglund et al. 2010; Aasen et al. 2012a; Andersen-Hollekim et al. 2019, 2021a; Bårdsgjerde et al. 2020, 2022). Self-management requires patients with sufficient health literacy to understand why it is important to adhere to lifestyle changes, including specific diets, fluid restrictions, and physical activity, and to administer medications as prescribed (Andersen-Hollekim et al. 2021a; Bårdsgjerde et al. 2022). Elderly patients expressed that they often negotiated between maintaining a good quality of life today and having a “long life”, considering how strictly they adhered to fluid and dietary restrictions (Aasen et al. 2012c).

4.4 Clinical Context

The studies showed that the level of involvement depended on the context. There is less need for participation in acute situations versus stable phases of disease. In acute situations, patients need short and clear information, provided through one-way communication from health professionals to patients (Höglund et al. 2010; Kvangarsnes et al. 2013a; Wilson et al. 2017; Bårdsgjerde et al. 2019, 2020, 2022).

During long-term treatment, patients desire to be involved in their care and treatment (Höglund et al. 2010; Schildmann et al. 2013; Wilson et al. 2017). Physicians conveyed that the patients wanted to be involved in decisions about the prescription of medications (Bårdsgjerde et al. 2022). Patient participation in decisions requires patients who are health literate: “If the patients are supposed to take part in decisions, it requires a great deal of information and that the patients really understand the information they have received” (Bårdsgjerde et al. 2020). Low levels of health literacy could hinder shared decision-making and may lead to health professionals making decisions on behalf of patients (Andersen-Hollekim et al. 2019; Bårdsgjerde et al. 2020).

Attending cardiac rehabilitation programmes seems to increase the patient’s health literacy, which leads to patients participating at a higher level for improving their health and achieving control over risk factors. As stated by one patient: “I have received most information through this course, they have told us about the heart’s physiology and its function, diets and exercise” (Bårdsgjerde et al. 2019). Yet, sufficient health literacy is not equal to increased involvement. Patients with renal failure conveyed that they were well informed before the initiation of dialysis, and yet they were still not involved in decisions regarding dialysis options (Andersen-Hollekim et al. 2020).

The importance of involving family caregivers as a resource for patients was pointed out in studies from the perspectives of health professionals (Kvangarsnes et al. 2013a; Cohen and Botti 2015; Andersen-Hollekim et al. 2019; Bårdsgjerde et al. 2020, 2022; Tarberg et al. 2020; Tarberg et al. 2022; Landstad et al. 2023). Especially, in palliative care, involving family caregivers was seen as a prerequisite when death at home was planned (Tarberg et al. 2022). Studies from the family caregivers’ perspective, however, showed that they often felt left out in the decision to plan for death at home: “He decided. He let us know early on that he wanted to stay home”. In some cases, family caregivers felt that they had too much responsibility and expressed concern about how best to bear the burden (Tarberg et al. 2019).

Studies have revealed that health professionals and family caregivers experience challenges in the involvement of family caregivers (Aasen et al. 2012a, b; Andersen-Hollekim et al. 2019; Tarberg et al. 2019, 2020, 2022; Bårdsgjerde et al. 2020, 2022). Health professionals have reported that family caregivers are little involved in dialysis treatment (Aasen et al. 2012a; Andersen-Hollekim et al. 2019). Family caregivers expressed that they felt forgotten and not involved when someone in their family was undergoing dialysis (Aasen et al. 2012b). In palliative care, family caregivers are often in need of information and dialogue with health professionals without the patient present. They experienced that it was difficult to ask for this information: “That would mean you want to talk about something that you can’t address with the patient present” (Tarberg et al. 2019).

5 Discussion

Based on the synthesis of previous research and pedagogical theory, we have developed a comprehensive model for patient participation (Fig. 2.2). In this model, we present the four themes in Sect. 2.4 using sub-themes relevant to understanding patient participation in health services. Our main contribution has been to add frame factors as a new theme related to previous research (Thompson et al. 2007).

Fig. 2.2
A block diagram. Frame factors have legislation, organizational health literacy, and collaboration. Interaction has contribution to action, share in reasoning process, and emotional reciprocity. Clinical context has clinical pathway and individual health literacy. Level of involvement has autonomous and shared decision-making.

Modified from “Perceptions of Patient Participation in the Myocardial Infarction Pathway among Patients and Health Professionals”. Philosophiae Doctor, Norwegian University of Science and Technology, Bårdsgjerde (2022)

Full size image

5.1 Interaction, Level of Involvement, and Clinical Context

The three themes of interaction, level of involvement, and clinical context were adopted from Thompson et al. (2007), an integrative approach to patient participation. The results of this meta-ethnography showed that these themes are consistent with Thompson et al.’s (2007) approach. There seems to be a common understanding among patients, family caregivers, and health professionals that patient participation can only be achieved through willingness from health professionals and patients, two-way communication, and trust and respect between the parties. In accordance with the taxonomy of levels of involvement where information-seeking/receptive and information-giving are lower levels of involvement, information was considered as a building block for patient participation in several of the included studies.

A notable finding was the number of studies exploring how patients, family caregivers, and health professionals experienced shared decision-making in different clinical contexts. In Thompson’s (2007) taxonomy of levels of involvement, shared decision-making is defined as an important aspect of patient participation, yet he argues that patient participation does not necessarily include the sharing of decisions, as the patients can choose to delegate the decisions to the health professionals. Several of the included studies emphasised challenges in shared decision-making. Both patients and health professionals experienced that in many clinical settings, patients were not able to participate in shared decision-making, due to an acute and life-threatening condition or because they felt that they lacked health literacy. Patients often claimed that they trusted the health professionals and wanted the physicians to make treatment and medical decisions.

5.2 Frame Factors

Frame factor theory provides an approach for understanding patient participation processes in a new way that can give insight into what hinders and promotes these processes. Administrative and physical frames, legislation, organisational health literacy, and collaboration will be important frame factors in health services that may promote or hinder patient participation. Administrative and physical frames include access to health professionals, time, and rooms for consultation. Legislation consists of, for example, patient and user rights, clinical guidelines, and standardised clinical pathways. Organisational health literacy is how organisations enable individuals to find, understand, and use information and services to inform health-related decisions and actions (Centers for Disease Control and Prevention (CDC) 2020). To achieve patient participation in clinical pathways, there is a need for collaboration between patients, family caregivers, and health personnel. Findings from this meta-ethnography pinpointed that interprofessional collaboration and coordination between different health professionals and healthcare organisations are important for patient participation. In addition, patients and their family caregivers should be involved in their care and treatment. Collaboration may also be linked to SDG 17, Partnership for goals. Global collaboration through international guidelines and clinical recommendations have been highlighted as important frame factors for quality in care and treatment. Identifying and analysing frame factors in patient participation processes will provide valuable knowledge to strengthen patient participation in practice.

Frame factors are constantly changing and are different depending on the context, however they can provide an open approach to gain new knowledge about patient participation processes. The frame factors do not consist of predetermined variables, but allow an open approach, enabling us to understand and explain various conditions that can promote or hinder patient participation in different clinical pathways or contexts (Kvalsund 1998).

Including frame factors adds a new dimension to the understanding of patient participation. Patient participation is dynamic, complex, and contextual. This qualitative meta-ethnography has shown that frame factors can promote and hinder patient participation. Frame factors have not previously been highlighted in definitions, theoretical approaches, and research on patient participation, and therefore appear to be under-communicated. Frame factor theory may be useful in understanding and revealing the complexity of patient participation in clinical practice and research.

Frame factors provide insight into opportunities and limitations for patient participation in practice. Putting the spotlight on frame factors can contribute to an understanding of how to create sustainable healthcare services. The Shanghai Declaration (WHO 2017) focused on three pillars to achieve the sustainability goals: good governance, healthy cities, and health literacy. A dynamic approach and commitment at the micro, meso, and macro level is necessary to achieve these sustainability goals. Patient participation is closely linked to health literacy, as it empowers patients and enables patient participation.

The comprehensive model will be valuable in developing health professionals’ knowledge about patient participation. The model is a useful resource in curricula for bachelor’s and master’s degrees in nursing, medical education, and other relevant healthcare and social care educations.

5.3 Strengths and Limitations

A broad systematic search was conducted, and we applied precise inclusion and exclusion criteria to avoid selection bias. We selected studies conducted in middle- and high-income countries to ensure transferability of the findings; 17 of the included studies are from Norway and several of them are authored by the authors of this chapter. This can be both a strength and a weakness. The authors are familiar with the research field, and the majority of the studies were identified in the systematic search.

Most of the studies were conducted in a Nordic context, and this may have an impact on the transferability of the findings to other countries and cultures. In Nordic countries, democratic values, equality, and patient involvement are highly valued and legislated. It is a strength that the analysis is based on empirical studies from countries that have similar healthcare systems.

6 Conclusion

There is a lack of research on patient participation in low-income countries. Our comprehensive model for patient participation might be appropriate for studying patient participation in different cultures and healthcare systems. We consider that the four themes in the model are also generally valid and relevant for low-income countries. The content of the themes would be contextual and culturally determined. The model may reveal facilitators and hindrances for the implementation of patient participation and equality globally.