ANSWER
Background
The ability of primary healthcare nurses to facilitate patient and community participation is becoming more widely recognized. There is still a lack of conceptual understanding of their contributions within a wide range of participation processes.

Aims
The study’s objectives were to create a conceptual framework that provides Information on the role of primary healthcare nurses in shaping participation processes with patients and communities in the context of chronic diseases, as well as to identify conditions that enable or hinder nurses’ promotion of patient and community participation.

Design
An integrative review was carried out.

Information sources
The study included twenty-three articles published between 2000 and 2019: 19 from PubMed and CHINA and four from other sources.

Methods of examination
An inductive data analysis and study quality assessment were carried out.

Results
The study identifies four areas in which nurses are involved in facilitating patient and community participation: (1) sharing knowledge of health problems and needs; (2) developing resources and facilitating patient education for self-management; (3) elevating patients’ voices as advocates in service development; and (4) supporting individual and community networks. The following factors influence nurses’ involvement in fostering participation processes: (1) the importance of care priorities and overall workload, (2) nurses’ attitudes toward participation, and (3) users’ acceptance of nurses as partners.

Conclusions
The framework can be a foundation for future research into nurses’ involvement in pursuing patient and community participation. Interventions should emphasize active forms of participation rather than passive forms of participation, such as patient education or advocacy. There is a need for more research on nurses’ involvement in community participation processes.

Impact
This framework can be used and adapted in future studies on patient and community involvement in primary care. It describes areas of participation, facilitators, and barriers within the broad range of primary healthcare nurses’ activities.

1 FIRST INTRODUCTION
Participation in healthcare is critical for improving population health (Boyce & Brown, 2017; D’Agostino et al., 2017; Rifkin, 2014). Individual and community empowerment can be achieved by implementing participatory measures (Ocloo & Matthews, 2016). Participation is linked to better health outcomes and patient safety (Laverack, 2006). (WHO, 2013). Participatory approaches to planning and organizing healthcare services can increase patient satisfaction and foster equity within and between communities (Johansson et al., 2002; Weingart et al., 2011). (Boyce & Brown, 2017).

Participation was proposed as a key to high-quality primary healthcare as early as 1978 in the Alma-Ata Declaration (WHO, 1978). Promoting participation in primary care settings has long been a requirement (e.g., Lawn et al., 2008; WHO, 2002, 2008; WHO & UNICEF, 2018). Individual (user) and community participation in health-related issues should thus be encouraged by primary healthcare professionals (Angel & Frederiksen, 2015; De Vos, Malaise et al., 2009; Luisi & Hämel, 2020; McEvoy et al., 2019). In this context, participation processes must also address the challenges individuals and communities face when dealing with chronic illnesses (Gillam, 2008). Most primary care consultations today are for chronic conditions (Finley et al., 2018). Primary care nurses created improved access and advanced tasks to increase chronically ill patients’ involvement in their care (Hämel & Vossing, 2017; Hämel et al., 2020; Nolte & Knai, 2014). However, little is known about how primary healthcare nurses initiate and shape patient and community participation in chronic disease settings.

2 BEGINNINGS
According to studies, nurses in various care settings facilitate patients’ involvement by bonding with patients and families and forming cooperative relationships (Kemppainen et al., 2013; Larsson et al., 2007; Sahlsten et al., 2009). Nurses strive to increase individual patient participation by educating patients and promoting self-management, for example (Norful et al., 2017; PAHO, 2018; Poitras et al., 2018). Sahlsten et al. (2008) discovered that nurses have different understandings of the concept of patient participation, including whether participation should be initiated by the nurse or demanded by the patient, in a concept analysis using studies primarily from a hospital setting. Friesacher (2010) discusses the ethical issues with a participation paradigm that ignores the unique situation of heavily burdened, chronically ill, or care-dependent patients. He emphasizes that encouraging patient participation in nursing necessitates respecting these patients’ limited resources and encouraging them to participate more actively in their care.
Furthermore, he emphasizes patients’ right to refuse participation (ibid.). Research frequently focuses on decision-making processes between health professionals and patients (Eldh et al., 2010). According to Eldh et al. (2006, 2010), patients’ understanding of participation extends beyond this to include being respected and knowing. As a result, a lifeworld perspective on participation is required, one that recognizes users’ autonomy in everyday matters and the importance of their social contexts, such as families, informal caregivers, and communities.

Supporting participation in primary healthcare also includes working with user groups, such as diabetes groups or older people, and engaging with communities, such as raising awareness of chronically ill people’s situations (Bath & Wakerman, 2015; Draper et al., 2010; Lemmens et al., 2015; March et al., 2015). According to studies, nurses and communities have long-standing bonds. Nurses’ knowledge of community values and problems provides a foundation for encouraging community involvement in health issues (Melo & Alves, 2019; Strandas & Bondas, 2017). Nurses participate in communities through health promotion and education and initiate collaborations among health professionals to address community needs (McCollum et al., 2017). There have, however, been few studies that have investigated and conceptualized nurses’ roles in community participation.

2.1 Nursing and participation conceptual and theoretical frameworks
Recognizing nursing theorists’ approaches to care is essential for understanding participation processes. Martinsen’s care philosophy recognizes care as a relationship founded on dependency and characterized by power imbalances that necessitate mutual trust (Alvsvg, 2014; Martinsen, 1989, 2011). This begs the question of how nurses, as caregivers, extend or limit ‘patients’ room for action’ (Delmar, 2012, p. 237).

Martinsen defines caring as having three dimensions: relational, practical, and moral. Caring is relational because it involves at least two people. Dependence and independence interactions influence relationships. Caring is practical because it manifests in concrete actions and is practised and learned. Caring is also moral, recognizing people’s ability to help themselves (Alvsvg, 2014; Martinsen, 1989). Many nursing theories that base nursing on the patient’s needs emphasize the importance of focusing on the patients’ lifeworlds (Arman et al., 2015; Dahlborg-Lyckhage et al., 2018). In their concept of lifeworld-led healthcare, Todres, Dahlberg, and Galvin emphasize the importance of patients’ experiences or ‘what things are like for them’ (Todres et al., 2007, p. 59). They emphasize the importance of taking patients’ and professionals’ expertise into account (Dahlberg et al., 2009; Todres et al., 2007). The authors criticize patient-centred or patient-led care approaches for overemphasizing patients’ agency while underestimating their vulnerability and support needs or for overemphasizing illness and vulnerability while underestimating individuals’ agency (Dahlberg et al., 2009). Fostering nurses’ participation in this regard would imply recognizing the complexities of health and well-being as an interaction between patients’ vulnerability and agency.
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Arnstein (1969) attempted to illuminate participation by focusing on community participation processes. She classified levels of participation as ranging from non-participation through manipulation and therapy to citizen control. Following this understanding, ‘real’ participation must include a power shift favouring marginalized groups (ibid.). Chronically ill and care-dependent people are vulnerable in this regard because they have limited resources to advance their interests. Rifkin (2014) observes that community participation is increasingly being used to improve community health outcomes. She criticizes the misuse of participation to support the achievement of predetermined goals without involving communities in goal-setting processes (Rifkin, 1996; see also Brunton et al., 2017). In place of such ‘top-down’ approaches to participation, ‘bottom-up’ frames are required (Laverack & Labonte, 2000; Rifkin, 1996), which respect the preferences and needs of those involved and allow communities to empower themselves (De Vos, De Ceukelaire, et al., 2009; Laverack, 2006; Rifkin, 1996). According to studies, when communities with similar health problems and needs are allowed to participate in primary healthcare planning and service development actively, they develop different strategies and solutions (Carlisle et al., 2018; Farmer & Nimegeer, 2014). The richness of community-led approaches should be regarded as an asset. Furthermore, in bottom-up frameworks, community empowerment is the end goal rather than the means (De Vos, De Ceukelaire, et al., 2009; Rifkin, 1996; Wallerstein, 2002). Although fostering community participation is increasingly being addressed as a task of primary healthcare professionals, research on how nurses are involved and may shape community participation is still in its infancy.

Lifeworld focus, power imbalances, empowerment orientation, and chronically ill people’s vulnerability provide a framework for reflection within which our research questions are addressed in the analysis.

3 THE ANALYSIS
3.1 Aim
This review examines the role of primary healthcare nurses in shaping patient and community participation processes in the context of chronic diseases. It takes into account the wide range of activities in which primary healthcare nurses are involved in working with individuals and communities:
In the context of chronic diseases, how are participation processes between nurses, patients, and communities shaped?
Which factors enable or hinder nurses’ promotion of patient and community participation?
These questions will help to shape the development of a conceptual framework that will consider how nurses can improve patient and community participation and how they perform. The framework can direct future research and policies to increase patient and community participation in primary care nursing.

3.2 Style
An integrative review was conducted, guided by Whittemore and Knafl’s (2005) updated methodology (see also Whittemore, 2005), and included theoretical contributions or literature reviews, as well as qualitative and quantitative studies on participation processes in the interaction of patients, communities, and nurses.

3.3 Criteria for inclusion/exclusion
Contributions to our review include Information on participation processes between nurses and patients or communities dealing with chronic diseases. We included research on participation processes involving chronically ill people or their families and on broader health promotion and prevention activities in the context of chronic diseases. We included literature that specifically mentions primary healthcare settings (for example, general practitioners’ offices, primary healthcare centres, and home care). We included literature published in both German and English between 2000 and 2019. Protocols for studies and contributions describing intervention developments but not their implementation or evaluation were not accepted. Finally, studies on participation in the context of maternal and child health were excluded. Contributions focusing solely on participation processes in the context of nursing education were also excluded.

3.4 Search Techniques
The literature search was conducted using the databases PubMed and CINAHL. To find relevant literature, keywords related to nursing, chronic conditions, primary healthcare, and user or community participation were used. Supporting Information contains a detailed overview of the search strategy.

3.5 Search Results
After duplicates were removed, the abstract screening included 1529 contributions, resulting in 43 articles being included in the full-text screening. This step eliminated 24 contributions. Figure 1 shows the reasons for the exclusions. We also conducted a manual search using Google Scholar, primary healthcare journals, and our literature databases to identify potentially relevant articles missed by the database search strategy. As a result, we added four articles to our review (Aston et al., 2009; Barratt & Thomas, 2019; Falk-Rafael, 2001; Figueira et al., 2018). The database search did not find these studies because they used country-specific terms for primary healthcare models, such as the Family Health Strategy (Brazil). Following careful consideration, the authors determined that these articles could not be identified satisfactorily using a revised search string. The first author carried out the screening steps, and at least one co-author double-checked the results of each step. If the authors disagreed, they reached an agreement through discussion.

Details can be found in the caption that follows the image.
1st ILLUSTRATION
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PRISMA flow chart of search results in PowerPoint [Colour figure available at wileyonlinelibrary] .com]
3.6 Evaluation of quality
We used the Critical Appraisal Skills Programme (CASP) to assess methodological limitations. The assessment was carried out by the first author, who used the CASP checklist for qualitative studies (CASP, 2018a) and the CASP checklist for randomized controlled trials (CASP, 2018b) (RCTs; CASP, 2018b). At least one co-author reviewed the results and discussed any discrepancies. There was no quality assessment for methodological approaches for which no CASP checklist was available. The overall evaluation (Tables 1 and 2) refers to methodological limitations, where minor denotes minor methodological limitations and severe’ denotes severe methodological limitations.

Note that + = ‘Yes,’ = ‘No,’ and 0 = ‘Can’t tell’. CASP 1: Was there a clear statement of the research’s objectives? Is a qualitative methodology appropriate for CASP 2? CASP 3: Was the research design appropriate for addressing the research objectives? CASP 4: Was the recruitment strategy appropriate for the research objectives? CASP 5: Was the data gathered in a manner that addressed the research question? CASP 6: Has the researcher-participant relationship been adequately considered? CASP 7: Have ethical considerations been taken into account? CASP 8: Was the data analysis rigorous enough? Is there a clear statement of findings in CASP 9?
CASP stands for Critical Appraisal Skills Programme.
TABLE 2: A quality assessment based on CASP (2018b)
No. Contribution

Minor to medium
Note that + = ‘Yes,’ = ‘No,’ and 0 = ‘Can’t tell’. CASP 1: Did the trial address a specific issue? CASP 2: Was the treatment assignment of patients randomized? CASP 3: Were all of the patients who participated in the trial properly accounted for at the end? CASP 4: Were patients, doctors, and researchers oblivious to treatment? CASP 5: How similar were the groups at the start of the trial? CASP 6: Were the groups treated equally apart from the experimental intervention? CASP 7: What was the magnitude of the treatment effect? CASP 8: How precise was the treatment effect estimate? CASP 9: Can the findings be applied to the local population or your situation? CASP 10: Did you consider all clinically significant outcomes? CASP 11: Do the benefits outweigh the risks and costs?
CASP stands for Critical Appraisal Skills Programme.
3.7 Abstraction of data
The first author summarized all contributions’ results, as Whittemore and Knafl (2005) recommended. A two-page summary template (adapted from Souza et al., 2010) was used to condense the data. This summary concentrated on the two research questions and reflected the various perspectives (nurses/users/third parties) examined in the studies. Both co-authors reviewed the summaries, and in cases of disagreement, the relevant factors were discussed among the authors.

3.8 Synthesis of data
A categorization system was used to synthesize data from the summaries. Based on the research questions, this system was created. It was used to categorize data openly by revealing themes in the articles (Whittemore & Knafl, 2005). Following multiple rounds of discussion in which all authors reached a consensus, subcategories were grouped into more abstract, main categories that later comprised the framework (Figure 2). Subcategories were regrouped and merged during the categorization process. We considered whether the categories were supported by the material of sufficient methodological quality based on the quality assessment. We removed categories where this was not the case. We eventually settled on four categories to structure the results section and the framework and represent the areas of participation. Subcategories are a good way to describe these areas in greater depth and identify similarities and differences between the contributions (ibid.).
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