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• v.8(3); 2016 Jul

The Literature Review: A Foundation for High-Quality Medical Education Research

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Despite a surge in published scholarship in medical education 1 and rapid growth in journals that publish educational research, manuscript acceptance rates continue to fall. 2 Failure to conduct a thorough, accurate, and up-to-date literature review identifying an important problem and placing the study in context is consistently identified as one of the top reasons for rejection. 3 , 4 The purpose of this editorial is to provide a road map and practical recommendations for planning a literature review. By understanding the goals of a literature review and following a few basic processes, authors can enhance both the quality of their educational research and the likelihood of publication in the Journal of Graduate Medical Education ( JGME ) and in other journals.

The Literature Review Defined

In medical education, no organization has articulated a formal definition of a literature review for a research paper; thus, a literature review can take a number of forms. Depending on the type of article, target journal, and specific topic, these forms will vary in methodology, rigor, and depth. Several organizations have published guidelines for conducting an intensive literature search intended for formal systematic reviews, both broadly (eg, PRISMA) 5 and within medical education, 6 and there are excellent commentaries to guide authors of systematic reviews. 7 , 8

• A literature review forms the basis for high-quality medical education research and helps maximize relevance, originality, generalizability, and impact.
• A literature review provides context, informs methodology, maximizes innovation, avoids duplicative research, and ensures that professional standards are met.
• Literature reviews take time, are iterative, and should continue throughout the research process.
• Researchers should maximize the use of human resources (librarians, colleagues), search tools (databases/search engines), and existing literature (related articles).
• Keeping organized is critical.

Such work is outside the scope of this article, which focuses on literature reviews to inform reports of original medical education research. We define such a literature review as a synthetic review and summary of what is known and unknown regarding the topic of a scholarly body of work, including the current work's place within the existing knowledge . While this type of literature review may not require the intensive search processes mandated by systematic reviews, it merits a thoughtful and rigorous approach.

Purpose and Importance of the Literature Review

An understanding of the current literature is critical for all phases of a research study. Lingard 9 recently invoked the “journal-as-conversation” metaphor as a way of understanding how one's research fits into the larger medical education conversation. As she described it: “Imagine yourself joining a conversation at a social event. After you hang about eavesdropping to get the drift of what's being said (the conversational equivalent of the literature review), you join the conversation with a contribution that signals your shared interest in the topic, your knowledge of what's already been said, and your intention.” 9

The literature review helps any researcher “join the conversation” by providing context, informing methodology, identifying innovation, minimizing duplicative research, and ensuring that professional standards are met. Understanding the current literature also promotes scholarship, as proposed by Boyer, 10 by contributing to 5 of the 6 standards by which scholarly work should be evaluated. 11 Specifically, the review helps the researcher (1) articulate clear goals, (2) show evidence of adequate preparation, (3) select appropriate methods, (4) communicate relevant results, and (5) engage in reflective critique.

Failure to conduct a high-quality literature review is associated with several problems identified in the medical education literature, including studies that are repetitive, not grounded in theory, methodologically weak, and fail to expand knowledge beyond a single setting. 12 Indeed, medical education scholars complain that many studies repeat work already published and contribute little new knowledge—a likely cause of which is failure to conduct a proper literature review. 3 , 4

Likewise, studies that lack theoretical grounding or a conceptual framework make study design and interpretation difficult. 13 When theory is used in medical education studies, it is often invoked at a superficial level. As Norman 14 noted, when theory is used appropriately, it helps articulate variables that might be linked together and why, and it allows the researcher to make hypotheses and define a study's context and scope. Ultimately, a proper literature review is a first critical step toward identifying relevant conceptual frameworks.

Another problem is that many medical education studies are methodologically weak. 12 Good research requires trained investigators who can articulate relevant research questions, operationally define variables of interest, and choose the best method for specific research questions. Conducting a proper literature review helps both novice and experienced researchers select rigorous research methodologies.

Finally, many studies in medical education are “one-offs,” that is, single studies undertaken because the opportunity presented itself locally. Such studies frequently are not oriented toward progressive knowledge building and generalization to other settings. A firm grasp of the literature can encourage a programmatic approach to research.

Approaching the Literature Review

Considering these issues, journals have a responsibility to demand from authors a thoughtful synthesis of their study's position within the field, and it is the authors' responsibility to provide such a synthesis, based on a literature review. The aforementioned purposes of the literature review mandate that the review occurs throughout all phases of a study, from conception and design, to implementation and analysis, to manuscript preparation and submission.

Planning the literature review requires understanding of journal requirements, which vary greatly by journal ( table 1 ). Authors are advised to take note of common problems with reporting results of the literature review. Table 2 lists the most common problems that we have encountered as authors, reviewers, and editors.

Sample of Journals' Author Instructions for Literature Reviews Conducted as Part of Original Research Article a

Common Problem Areas for Reporting Literature Reviews in the Context of Scholarly Articles

Locating and Organizing the Literature

Three resources may facilitate identifying relevant literature: human resources, search tools, and related literature. As the process requires time, it is important to begin searching for literature early in the process (ie, the study design phase). Identifying and understanding relevant studies will increase the likelihood of designing a relevant, adaptable, generalizable, and novel study that is based on educational or learning theory and can maximize impact.

Human Resources

A medical librarian can help translate research interests into an effective search strategy, familiarize researchers with available information resources, provide information on organizing information, and introduce strategies for keeping current with emerging research. Often, librarians are also aware of research across their institutions and may be able to connect researchers with similar interests. Reaching out to colleagues for suggestions may help researchers quickly locate resources that would not otherwise be on their radar.

During this process, researchers will likely identify other researchers writing on aspects of their topic. Researchers should consider searching for the publications of these relevant researchers (see table 3 for search strategies). Additionally, institutional websites may include curriculum vitae of such relevant faculty with access to their entire publication record, including difficult to locate publications, such as book chapters, dissertations, and technical reports.

Strategies for Finding Related Researcher Publications in Databases and Search Engines

Search Tools and Related Literature

Researchers will locate the majority of needed information using databases and search engines. Excellent resources are available to guide researchers in the mechanics of literature searches. 15 , 16

Because medical education research draws on a variety of disciplines, researchers should include search tools with coverage beyond medicine (eg, psychology, nursing, education, and anthropology) and that cover several publication types, such as reports, standards, conference abstracts, and book chapters (see the box for several information resources). Many search tools include options for viewing citations of selected articles. Examining cited references provides additional articles for review and a sense of the influence of the selected article on its field.

Box Information Resources

• Web of Science a
• Education Resource Information Center (ERIC)
• Cumulative Index of Nursing & Allied Health (CINAHL) a
• Google Scholar

Once relevant articles are located, it is useful to mine those articles for additional citations. One strategy is to examine references of key articles, especially review articles, for relevant citations.

Getting Organized

As the aforementioned resources will likely provide a tremendous amount of information, organization is crucial. Researchers should determine which details are most important to their study (eg, participants, setting, methods, and outcomes) and generate a strategy for keeping those details organized and accessible. Increasingly, researchers utilize digital tools, such as Evernote, to capture such information, which enables accessibility across digital workspaces and search capabilities. Use of citation managers can also be helpful as they store citations and, in some cases, can generate bibliographies ( table 4 ).

Citation Managers

Knowing When to Say When

Researchers often ask how to know when they have located enough citations. Unfortunately, there is no magic or ideal number of citations to collect. One strategy for checking coverage of the literature is to inspect references of relevant articles. As researchers review references they will start noticing a repetition of the same articles with few new articles appearing. This can indicate that the researcher has covered the literature base on a particular topic.

Putting It All Together

In preparing to write a research paper, it is important to consider which citations to include and how they will inform the introduction and discussion sections. The “Instructions to Authors” for the targeted journal will often provide guidance on structuring the literature review (or introduction) and the number of total citations permitted for each article category. Reviewing articles of similar type published in the targeted journal can also provide guidance regarding structure and average lengths of the introduction and discussion sections.

When selecting references for the introduction consider those that illustrate core background theoretical and methodological concepts, as well as recent relevant studies. The introduction should be brief and present references not as a laundry list or narrative of available literature, but rather as a synthesized summary to provide context for the current study and to identify the gap in the literature that the study intends to fill. For the discussion, citations should be thoughtfully selected to compare and contrast the present study's findings with the current literature and to indicate how the present study moves the field forward.

To facilitate writing a literature review, journals are increasingly providing helpful features to guide authors. For example, the resources available through JGME include several articles on writing. 17 The journal Perspectives on Medical Education recently launched “The Writer's Craft,” which is intended to help medical educators improve their writing. Additionally, many institutions have writing centers that provide web-based materials on writing a literature review, and some even have writing coaches.

The literature review is a vital part of medical education research and should occur throughout the research process to help researchers design a strong study and effectively communicate study results and importance. To achieve these goals, researchers are advised to plan and execute the literature review carefully. The guidance in this editorial provides considerations and recommendations that may improve the quality of literature reviews.

Nursing: Literature Review

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Good Place to Start: Citation Databases

Interdisciplinary Citation Databases:

A good place to start your research  is to search a research citation database to view the scope of literature available on your topic.

TIP #1: SEED ARTICLE Begin your research with a "seed article" - an article that strongly supports your research topic.  Then use a citation database to follow the studies published by finding articles which have cited that article, either because they support it or because they disagree with it.

TIP #2: SNOWBALLING Snowballing is the process where researchers will begin with a select number of articles they have identified relevant/strongly supports their topic and then search each articles' references reviewing the studies cited to determine if they are relevant to your research.

BONUS POINTS: This process also helps identify key highly cited authors within a topic to help establish the "experts" in the field.

Begin by constructing a focused research question to help you then convert it into an effective search strategy.

• Identify keywords or synonyms
• Type of study/resources
• Which database(s) to search
• Asking a Good Question (PICO)
• PICO - AHRQ
• PICO - Worksheet
• What Is a PICOT Question?

Seminal Works: Search Key Indexing/Citation Databases

• Google Scholar
• Web of Science

TIP – How to Locate Seminal Works

• DO NOT: Limit by date range or you might overlook the seminal works
• DO: Look at highly cited references (Seminal articles are frequently referred to “cited” in the research)
• DO: Search citation databases like Scopus, Web of Science and Google Scholar

Web Resources

What is a literature review?

A literature review is a comprehensive and up-to-date overview of published information on a subject area. Conducting a literature review demands a careful examination of a body of literature that has been published that helps answer your research question (See PICO). Literature reviewed includes scholarly journals, scholarly books, authoritative databases, primary sources and grey literature.

A literature review attempts to answer the following:

• What is known about the subject?
• What is the chronology of knowledge about my subject?
• Are there any gaps in the literature?
• Is there a consensus/debate on issues?
• Create a clear research question/statement
• Define the scope of the review include limitations (i.e. gender, age, location, nationality...)
• Search existing literature including classic works on your topic and grey literature
• Evaluate results and the evidence (Avoid discounting information that contradicts your research)
• Track and organize references
• How to conduct an effective literature search.
• Social Work Literature Review Guidelines (OWL Purdue Online Writing Lab)

What is PICO?

The PICO model can help you formulate a good clinical question. Sometimes it's referred to as PICO-T, containing an optional 5th factor. 

Search Example

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Nursing: How to Write a Literature Review

• Traditional or Narrative Literature Review

Getting started

1. start with your research question, 2. search the literature, 3. read & evaluate, 4. finalize results, 5. write & revise, brainfuse online tutoring and writing review.

• RESEARCH HELP

The best way to approach your literature review is to break it down into steps.  Remember, research is an iterative process, not a linear one.  You will revisit steps and revise along the way.  Get started with the handout, information, and tips from various university Writing Centers below that provides an excellent overview.  Then move on to the specific steps recommended on this page.

• UNC- Chapel Hill Writing Center Literature Review Handout, from the University of North Carolina at Chapel Hill.
• University of Wisconsin-Madison Writing Center Learn how to write a review of literature, from the University of Wisconsin-Madison.
• University of Toronto-- Writing Advice The Literature Review: A few tips on conducting it, from the University of Toronto.
• Begin with a topic.
• Understand the topic. 
• Familiarize yourself with the terminology.  Note what words are being used and keep track of these for use as database search keywords. 
• See what research has been done on this topic before you commit to the topic.  Review articles can be helpful to understand what research has been done .
• Develop your research question.  (see handout below)
• How comprehensive should it be? 
• Is it for a course assignment or a dissertation? 
• How many years should it cover?
• Developing a good nursing research question Handout. Reviews PICO method and provides search tips.

Your next step is to construct a search strategy and then locate & retrieve articles.

•  There are often 2-4 key concepts in a research question.
• Search for primary sources (original research articles.)
• These are based on the key concepts in your research question.
• Remember to consider synonyms and related terms.
• Which databases to search?
• What limiters should be applied (peer-reviewed, publication date, geographic location, etc.)?

Review articles (secondary sources)

Use to identify literature on your topic, the way you would use a bibliography.  Then locate and retrieve the original studies discussed in the review article. Review articles are considered secondary sources.

• Once you have some relevant articles, review reference lists to see if there are any useful articles.
• Which articles were written later and have cited some of your useful articles?  Are these, in turn, articles that will be useful to you? 
• Keep track of what terms you used and what databases you searched. 
• Use database tools such as save search history in EBSCO to help.
• Keep track of the citations for the articles you will be using in your literature review. 
• Use RefWorks or another method of tracking this information. 
• Database Search Strategy Worksheet Handout. How to construct a search.
• TUTORIAL: How to do a search based on your research question This is a self-paced, interactive tutorial that reviews how to construct and perform a database search in CINAHL.

The next step is to read, review, and understand the articles.

• Start by reviewing abstracts. 
• Make sure you are selecting primary sources (original research articles).
• Note any keywords authors report using when searching for prior studies.
• You will need to evaluate and critique them and write a synthesis related to your research question.
• Consider using a matrix to organize and compare and contrast the articles . 
• Which authors are conducting research in this area?  Search by author.  
• Are there certain authors’ whose work is cited in many of your articles?  Did they write an early, seminal article that is often cited?
• Searching is a cyclical process where you will run searches, review results, modify searches, run again, review again, etc. 
• Critique articles.  Keep or exclude based on whether they are relevant to your research question.
• When you have done a thorough search using several databases plus Google Scholar, using appropriate keywords or subject terms, plus author’s names, and you begin to find the same articles over and over.
• Remember to consider the scope of your project and the length of your paper.  A dissertation will have a more exhaustive literature review than an 8 page paper, for example.
• What are common findings among each group or where do they disagree? 
• Identify common themes. Identify controversial or problematic areas in the research. 
• Use your matrix to organize this.
• Once you have read and re-read your articles and organized your findings, you are ready to begin the process of writing the literature review.

2. Synthesize.  (see handout below)

• Include a synthesis of the articles you have chosen for your literature review.
• A literature review is NOT a list or a summary of what has been written on a particular topic. 
• It analyzes the articles in terms of how they relate to your research question. 
• While reading, look for similarities and differences (compare and contrast) among the articles.  You will create your synthesis from this.
• Synthesis Examples Handout. Sample excerpts that illustrate synthesis.

Regis Online students have access to Brainfuse. Brainfuse is an online tutoring service available through a link in Moodle. Meet with a tutor in a live session or submit your paper for review.

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• Research article
• Open access
• Published: 16 May 2019

An analysis of current practices in undertaking literature reviews in nursing: findings from a focused mapping review and synthesis

• Helen Aveyard   ORCID: orcid.org/0000-0001-5133-3356 1 &
• Caroline Bradbury-Jones 2  

BMC Medical Research Methodology volume  19 , Article number:  105 ( 2019 ) Cite this article

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In this paper we discuss the emergence of many different methods for doing a literature review. Referring back to the early days, when there were essentially two types of review; a Cochrane systematic review and a narrative review, we identify how the term systematic review is now widely used to describe a variety of review types and how the number of available methods for doing a literature review has increased dramatically. This led us to undertake a review of current practice of those doing a literature review and the terms used to describe them.

We undertook a focused mapping review and synthesis. Literature reviews; defined as papers with the terms review or synthesis in the title, published in five nursing journals between January 2017–June 2018 were identified. We recorded the type of review and how these were undertaken.

We identified more than 35 terms used to describe a literature review. Some terms reflected established methods for doing a review whilst others could not be traced to established methods and/or the description of method in the paper was limited. We also found inconsistency in how the terms were used.

We have identified a proliferation of terms used to describe doing a literature review; although it is not clear how many distinct methods are being used. Our review indicates a move from an era when the term narrative review was used to describe all ‘non Cochrane’ reviews; to a time of expansion when alternative systematic approaches were developed to enhance rigour of such narrative reviews; to the current situation in which these approaches have proliferated to the extent so that the academic discipline of doing a literature review has become muddled and confusing. We argue that an ‘era of consolidation’ is needed in which those undertaking reviews are explicit about the method used and ensure that their processes can be traced back to a well described, original primary source.

Peer Review reports

Over the past twenty years in nursing, literature reviews have become an increasingly popular form of synthesising evidence and information relevant to the profession. Along with this there has been a proliferation of publications regarding the processes and practicalities of reviewing [ 1 , 2 , 3 , 4 ], This increase in activity and enthusiasm for undertaking literature reviews is paralleled by the foundation of the Cochrane Collaboration in 1993. Developed in response to the need for up-to-date reviews of evidence of the effectiveness of health care interventions, the Cochrane Collaboration introduced a rigorous method of searching, appraisal and analysis in the form of a ‘handbook’ for doing a systematic review [ 5 ] .Subsequently, similar procedural guidance has been produced, for example by the Centre for Reviews and Dissemination (CRD) [ 6 ] and The Joanna Briggs Institute [ 7 ]. Further guidance has been published to assist researchers with clarity in the reporting of published reviews [ 8 ].

In the early days of the literature review era, the methodological toolkit for those undertaking a literature was polarised, in a way that mirrored the paradigm wars of the time within mixed-methods research [ 9 ]. We refer to this as the ‘dichotomy era’ (i.e. the 1990s), The prominent methods of literature reviewing fell into one of two camps: The highly rigorous and systematic, mostly quantitative ‘Cochrane style’ review on one hand and a ‘narrative style’ review on the other hand, whereby a body of literature was summarised qualitatively, but the methods were often not articulated. Narrative reviews were particularly popular in dissertations and other student work (and they continue to be so in many cases) but have been criticised for a lack of systematic approach and consequently significant potential for bias in the findings [ 10 , 11 ].

The latter 1990s and early 2000, saw the emergence of other forms of review, developed as a response to the Cochrane/Narrative dichotomy. These alternative approaches to the Cochrane review provided researchers with reference points for performing reviews that drew on different study types, not just randomised controlled trials. They promoted a systematic and robust approach for all reviews, not just those concerned with effectiveness of interventions and treatments. One of the first published description of methods was Noblet and Hare’s (1998) ‘Meta-ethnography’ [ 12 ]. This method, although its name suggests otherwise, could incorporate and synthesise all types of qualitative research, not just ethnographies. The potential confusion regarding the inclusion of studies that were not ethnographies within a meta-ethnography, promoted the description of other similar methods, for example, the meta-synthesis of Walsh and Downe (2005) [ 13 ] and the thematic synthesis of Thomas and Harden (2008) [ 14 ]. Also, to overcome the dichotomy of the quantitative/qualitative reviews, the integrative review was described according to Whitemore and Knafl (2005) [ 15 ]. These reviews can be considered to be literature reviews that have been done in a systematic way but not necessarily adhering to guidelines established by the Cochrane Collaboration. We conceptualise this as the ‘expansion era’. Some of the methods are summarised in Table  1 .

Over the past two decades there has been a proliferation of review types, with corresponding explosion of terms used to describe them. A review of evidence synthesis methodologies by Grant and Booth in 2009 [ 20 ] identified 14 different approaches to reviewing the literature and similarly, Booth and colleagues [ 21 ] detailed 19 different review types, highlighting the range of review types currently available. We might consider this the ‘proliferation era’. This is however, somewhat a double-edged sword, because although researchers now have far more review methods at their disposal, there is risk of confusion in the field. As Sabatino and colleagues (2014) [ 22 ] have argued, review methods are not always consistently applied by researchers.

Aware of such potential inconsistency and also our own confusion at times regarding the range of review methods available, we questioned what was happening within our own discipline of nursing. We undertook a snap-shot, contemporary analysis to explore the range of terms used to describe reviews, the methods currently described in nursing and the underlying trends and patterns in searching, appraisal and analysis adopted by those doing a literature review. The aim was to gain some clarity on what is happening within the field, in order to understand, explain and critique what is happening within the proliferation era.

In order to explore current practices in doing a literature review, we undertook a ‘Focused Mapping Review and Synthesis’ (FMRS) – an approach that has been described only recently. This form of review [ 19 ] is a method of investigating trends in academic publications and has been used in a range of issues relevant to nursing and healthcare, for example, theory in qualitative research [ 23 ] and vicarious trauma in child protection research [ 24 ].

A FMRS seeks to identify what is happening within a particular subject or field of inquiry; hence the search is restricted to a particular time period and to pre-identified journals. The review has four distinct features: It: 1) focuses on identifying trends in an area rather than a body of evidence; 2) creates a descriptive map or topography of key features of research within the field rather than a synthesis of findings; 3) comments on the overall approach to knowledge production rather than the state of the evidence; 4) examines this within a broader epistemological context. These are translated into three specific focused activities: 1) targeted journals; 2) a specific subject; 3) a defined time period. The FMRS therefore, is distinct from other forms of review because it responds to questions concerned with ‘what is happening in this field?’ It was thus an ideal method to investigate current practices in literature reviews in nursing.

Using the international Scopus (2016) SCImago Journal and Country Rank, we identified the five highest ranked journals in nursing at that time of undertaking the review. There was no defined method for determining the number of journals to include in a review; the aim was to identify a sample and we identified five journals in order to search from a range of high ranking journals. We discuss the limitations of this later. Journals had to have ‘nursing’ or ‘nurse’ in the title and we did not include journals with a specialist focus, such as nutrition, cancer etcetera. The included journals are shown in Table  2 and are in order according to their ranking. We recognise that our journal choice meant that only articles published in English made it into the review.

A key decision in a FMRS is the time-period within which to retrieve relevant articles. Like many other forms of review, we undertook an initial scoping to determine the feasibility and parameters of the project [ 19 ]. In our previous reviews, the timeframe has varied from three months [ 23 ] to 6 years [ 24 ]. The main criterion is the likelihood for the timespan to contain sufficient articles to answer the review questions. We set the time parameter from January 2017–June 2018. We each took responsibility for two and three journals each from which to retrieve articles. We reviewed the content page of each issue of each journal. For our purposes, in order to reflect the diverse range of terms for describing a literature review, as described earlier in this paper, any paper that contained the term ‘review’ or ‘synthesis’ in the title was included in the review. This was done by each author individually but to enhance rigour, we worked in pairs to check each other’s retrieval processes to confirm inter-rater consistency. This process allowed any areas of uncertainty to be discussed and agreed and we found this form of calibration crucial to the process. The inclusion and exclusion criteria are shown in Table  3 .

Articles meeting the inclusion criteria, papers were read in full and data was extracted and recorded as per the proforma developed for the study (Table 4 ). The proforma was piloted on two papers to check for usability prior to data extraction. Data extraction was done independently but we discussed a selection of papers to enhance rigour of the process. No computer software was used in the analysis of the data. We did not critically appraise the included studies for quality because our purpose was to profile what is happening in the field rather than to draw conclusions from the included studies’ findings.

Once the details from all the papers had been extracted onto the tables, we undertook an analysis to identify common themes in the included articles. Because our aim was to produce a snap-shot profile, our analysis was thematic and conceptual. Although we undertook some tabulation and numerical analysis, our primary focus was on capturing patterns and trends characterised by the proliferation era. In line with the FMRS method, in the findings section we have used illustrative examples from the included articles that reflect and demonstrate the point or claim being made. These serve as useful sources of information and reference for readers seeking concrete examples.

Between January 2017 and June 2018 in the five journals we surveyed, a total of 222 papers with either ‘review’ or ‘synthesis’ in the title were retrieved and included in our analysis. We identified three primary themes: 1) Proliferation in names for doing a review; 2) Allegiance to an established review method; 3) Clarity about review processes. The results section is organised around these themes.

Proliferation in names for doing a review

We identified more than 35 terms used by authors to describe a literature review. Because we amalgamated terms such as ‘qualitative literature review’ and ‘qualitative review’ the exact number is actually slightly higher. It was clear from reading the reviews that many different terms were used to describe the same processes. For example qualitative systematic review, qualitative review and meta-synthesis, qualitative meta-synthesis, meta-ethnography all refer to a systematic review of qualitative studies. We have therefore grouped together the review types that refer to a particular type of review as described by the authors of the publications used in this study (Table  5 ).

In many reviews, the specific type of review was indicated in the title as seen for example in Table  5 . A striking feature was that all but two of the systematic reviews that contained a meta-analysis were labelled as such in the title; providing clarity and ease of retrieval. Where a literature review did not contain a meta-analysis, the title of the paper was typically referred to a ‘systematic review’; the implication being that a systematic review is not necessarily synonymous with a meta-analysis. However as discussed in the following section, this introduced some muddying of water, with different interpretations of what systematic review means and how broadly this term is applied. Some authors used the methodological type of included papers to describe their review. For example, a Cochrane-style systematic review was undertaken [ 25 ] but the reviewers did not undertake a meta-analysis and thus referred to their review as a ‘quantitative systematic review’.

Allegiance to an established literature review method

Many literature reviews demonstrated allegiance to a defined method and this was clearly and consistently described by the authors. For example, one team of reviewers [ 26 ] articulately described the process of a ‘meta-ethnography’ and gave a detailed description of their study and reference to the origins of the method by Noblet and Hare (1988) [ 12 ]. Another popular method was the ‘integrative review’ where most authors referred to the work of one or two seminal papers where the method was originally described (for example, Whitemore & Knafl 2005 [ 15 ]).

For many authors the term systematic review was used to mean a review of quantitative research, but some authors [ 27 , 28 , 29 ],used the term systematic review to describe reviews containing both qualitative and quantitative data.

However in many reviews, commitment to a method for doing a literature review appeared superficial, undeveloped and at times muddled. For example, three reviews [ 30 , 31 , 32 ] , indicate an integrative review in the title of their review, but this is the only reference to the method; there is no further reference to how the components of an integrative review are addressed within the paper. Other authors do not state allegiance to any particular method except to state a ‘literature review’ [ 33 ] but without an outline of a particular method for doing so. Anther review [ 34 ] reports a ‘narrative review’ but does not give further information about how this was done, possibly indicative of the lack of methods associated with the traditional narrative review. Three other reviewers documented how they searched, appraised and analysed their literature but do not reference an over-riding approach for their review [ 35 , 36 , 37 ]. In these examples, the review can be assumed to be a literature review, but the exact approach is not clear.

In other reviews, the methods for doing a literature review appear to be used interchangeably. For example in one review [ 38 ] the term narrative review was used in the title but in the main text an integrative review was described. In another review [ 39 ] two different and distinct methods were combined in a ‘meta-ethnographic meta-synthesis’.

Some authors [ 40 , 41 ] referred to a method used to undertake their review, for example a systematic review, but did not reference the primary source from where the method originated. Instead a secondary source, such as a textbook is used to reference the approach taken [ 20 , 42 ].

Clarity about review processes

Under this theme we discerned two principal issues: searching and appraisal. The majority of literature reviews contain three components- searching, appraisal and analysis, details of which are usually reported in the methods section of the papers. However, this is not always the case and for example, one review [ 43 ] provides only a search strategy with no information about the overall method or how critical appraisal or analysis were undertaken. Despite the importance of the process of analysis, we found little discussion of this in the papers reviewed.

The overwhelming trend for those doing a literature review was to describe a comprehensive search; although for many in our sample, a comprehensive search appeared to be limited to a database search; authors did not describe additional search strategies that would enable them to find studies that might be missed through electronic searching. Furthermore, authors did not define what a comprehensive search entailed, for example whether this included grey literature. We identified a very small number of studies where authors had undertaken a purposive sample [ 26 , 44 ]; in these reviews authors clearly stated that their search was for ‘seminal papers’ rather than all papers.

We reviewed the approaches to critical appraisal described in the papers and there were varying interpretations of what this means and which aspect of the included articles were to be subject to appraisal. Some authors [ 36 , 45 , 46 ] used the term ‘critical appraisal’ to refer to relevance of the paper to the review, rather than quality criteria. In that sense critical appraisal was used more as an inclusion criterion regarding relevance, rather than quality in the methods used. Mostly though, the term was used to describe the process of critical analysis of the methodological quality of included papers included in a review. When the term was used in this way to refer to quality criteria, appraisal tools were often used; for example, one review [ 47 ] provides a helpful example when they explain how a particular critical appraisal tool was used to asses the quality of papers in their review. Formal critical appraisal was undertaken by the vast majority reviewers, however the role of critical appraisal in the paper was often not explained [ 33 , 48 ]. It was common for a lot of detail to be provided about the approach to appraisal, including how papers were assessed and how disagreements between reviewers about the quality of individual papers were resolved, with no further mention of the subsequent role of the appraisal in the review. The reason for doing the critical appraisal in the review was often unclear and furthermore, in many cases, researchers included all papers within their review regardless of quality. For example, one team of reviewers [ 49 ] explained how the process, in their view, is not to exclude studies but to highlight the quality of evidence available. Another team of reviewers described how they did not exclude studies on the basis of quality because of the limited amount of research available on the topic [ 50 ].

Our review has identified a multiplicity of similar terms and approaches used by authors when doing a literature review, that we suggests marks the ‘proliferation era’. The expansion of terms used to describe a literature review has been observed previously [ 19 , 21 ]. We have identified an even wider range of terms, indicating that this trend may be increasing. This is likely to give the impression of an incoherent and potentially confusing approach to the scholarly undertaking of doing a literature review and is likely to be particularly problematic for novice researchers and students when attempting to grapple with the array of approaches available to them. The range of terms used in the title of papers to describe a literature review may cause both those new to research to wonder what the difference is between a qualitative evidence synthesis and a qualitative systematic review and which method is most suitable for their enquiry.

The clearest articles in our review were those that reported a systematic review with or without a meta-analysis. For example, one team of reviewers [ 25 ] undertook a Cochrane-style systematic review but did not undertake a meta-analysis and thus referred to their review as a ‘quantitative systematic review’. We found this form of labelling clear and helpful and is indeed in line with current recommendations [ 8 ]. While guidelines exist for the publication of systematic reviews [ 8 , 51 ], given the range of terms that are used by authors, some may be unclear when these guidelines should apply and this adds some confusion to the field. Of course, authors are at liberty to call their review processes whatever they deem appropriate, but our analysis has unearthed some inconsistencies that are confusing to the field of literature reviewing.

There is current debate about the status of literature reviews that are not ‘Cochrane’ style reviews [ 52 ]. Classification can be complex and whilst it might be tempting to refer to all non Cochrane-style reviews as ‘narrative reviews’ [ 52 ], literature reviews that conform to a recognised method would generally not be considered as such [ 53 ] and indeed the Cochrane Collaboration handbook refers to the principles of systematic review as applicable to different types of evidence, not just randomised controlled trials [ 5 ] .This raises the question as to whether the term systematic review should be an umbrella term referring to any review with an explicit method; which is implicit in the definition of a systematic review, but which raises the question as to how rigorous a method has to be to meet these standards, a thorny issue which we have identified in this study.

This review has identified a lack of detail in the reporting of the methods used by those doing a review. In 2017, Thorne raised the rhetorical question: ‘What kind of monster have we created?‘ [ 54 ]. Critiquing the growing investment in qualitative metasyntheses, she observed that many reviews were being undertaken that position themselves as qualitative metasyntheses, yet are theoretically and methodologically superficial. Thorne called for greater clarity and sense of purpose as the ‘trend in synthesis research marches forward’ [ 54 ]. Our review covered many review types, not just the qualitative meta-synthesis and its derivatives. However, we concur with Thorne’s conclusion that research methods are not extensively covered or debated in many of the published papers which might explain the confusion of terms and mixing of methods.

Despite the proliferation in terms for doing a literature review, and corresponding associated different methods and a lack of consistency in their application, our review has identified how the methods used (or indeed the reporting of the methods) appear to be remarkably similar in most publications. This may be due to limitations in the word count available to authors. However for example, the vast majority of papers describe a comprehensive search, critical appraisal and analysis. The approach to searching is of particular note; whilst comprehensive searching is the cornerstone of the Cochrane approach, other aproaches advocate that a sample of literature is sufficient [ 15 , 20 ]. Yet in our review we found only two examples where reviewers had used this approach, despite many other reviews claiming to be undertaking a meta-ethnography or meta-synthesis. This indicates that many of those doing a literature review have defaulted to the ‘comprehensive search’ irrespective of the approach to searching suggested in any particular method which is again indicative of confusion in the field.

Differences are reported in the approach to searching and critical appraisal and these appear not to be linked to different methods, but seem to be undertaken on the judgement and discretion of the reviewers without rationale or justification within the published paper. It is not for us to question researchers’ decisions as regards managing the flow of articles through their reviews, but when it comes to the issue of both searching and lack of clarity about the role of critical appraisal there is evidence of inconsistency by those doing a literature review. This reflects current observations in the literature where the lack of clarity about the role of critical appraisal within a literature review is debated . [ 55 , 56 ].

Our review indicates that many researchers follow a very similar process, regardless of their chosen method and the real differences that do exist between published methods are not apparent in many of the published reviews. This concurs with previously mentioned concerns [ 54 ] about the superficial manner in which methods are explored within literature reviews. The overriding tendency is to undertake a comprehensive review, critical appraisal and analysis, following the formula prescribed by Cochrane, even if this is not required by the literature review method stated in the paper. Other researchers [ 52 ] have questioned whether the dominance of the Cochrane review should be questioned. We argue that emergence of different methods for doing a literature review in a systematic way has indeed challenged the perceived dominance of the Cochrane approach that characterised the dichotomy era, where the only alternative was a less rigourous and often poorly described process of dealing with literature. It is positive that there is widespread acknowledgement of the validity of other approaches. But we argue that the expansion era, whereby robust processes were put forward as alternatives that filled the gap left by polarisation, has gone too far. The magnitude in the number of different approaches identified in this review has led to a confused field. Thorne [ 54 ] refers to a ‘meta-madness’; with the proliferation of methods leading to the oversimplification of complex literature and ideas. We would extend this to describe a ‘meta-muddle’ in which, not only are the methods and results oversimplified, but the existence of so many terms used to describe a literature review, many of them used interchangeably, has added a confusion to the field and prevented the in-depth exploration and development of specific methods. Table  6 shows the issues associated with the proliferation era and importantly, it also highlights the recommendations that might lead to a more coherent reviewing community in nursing.

The terms used for doing a literature review are often used both interchangeably and inconsistently, with minimal description of the methods undertaken. It is not surprising therefore that some journal editors do not index these consistently within the journal. For example, in one edition of one journal included in the review, there are two published integrative reviews. One is indexed in the section entitled as a ‘systematic review’, while the other is indexed in a separate section entitled ‘literature review’. In another edition of a journal, two systematic reviews with meta-analysis are published. One is listed as a research article and the other as a review and discussion paper. It seems to us then, that editors and publishers might sometimes also be confused and bewildered themselves.

Whilst guidance does exist for the publication of some types of systematic reviews in academic journals; for example the PRISMA statement [ 8 ] and Entreq guidelines [ 51 ], which are specific to particular qualitative synthesis, guidelines do not exist for each approach. As a result, for those doing an alternative approach to their literature review, for example an integrative review [ 15 ], there is only general publication guidance to assist. In the current reviewing environment, there are so many terms, that more specific guidance would be impractical anyway. However, greater clarity about the methods used and halting the introduction of different terms to mean the same thing will be helpful.

Limitations

This study provides a snapshot of the way in which literature reviews have been described within a short publication timeframe. We were limited for practical reasons to a small section of high impact journals. Including a wider range of journals would have enhanced the transferability of the findings. Our discussion is, of course, limited to the review types that were published in the timeframe, in the identified journals and which had the term ‘review’ or ‘synthesis’ in the title. This would have excluded papers that were entitled ‘meta-analysis’. However as we were interested in the range of reviews that fall outside the scope of a meta-analysis, we did not consider that this limited the scope of the paper. Our review is further limited by the lack of detail of the methods undertaken provided in many of the papers reviewed which, although providing evidence for our arguments, also meant that we had to assume meaning that was unclear from the text provided.

The development of rigorous methods for doing a literature review is to be welcomed; not all review questions can be answered by Cochrane style reviews and robust methods are needed to answer review questions of all types. Therefore whilst we welcome the expansion in methods for doing a literature review, the proliferation in the number of named approaches should be, in our view, a cause for reflection. The increase in methods could be indicative of an emerging variation in possible approaches; alternatively, the increase could be due to a lack of conceptual clarity where, on closer inspection, the methods do not differ greatly and could indeed be merged. Further scrutiny of the methods described within many papers support the latter situation but we would welcome further discussion about this. Meanwhile, we urge researchers to make careful consideration of the method they adopt for doing a literature review, to justify this approach carefully and to adhere closely to its method. Having witnessed an era of dichotomy, expansion and proliferation of methods for doing a literature review, we now seek a new era of consolidation.

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Aveyard, H., Bradbury-Jones, C. An analysis of current practices in undertaking literature reviews in nursing: findings from a focused mapping review and synthesis. BMC Med Res Methodol 19 , 105 (2019). https://doi.org/10.1186/s12874-019-0751-7

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Introduction to critical appraisal

Evidence-based nursing (EBN) means using the best available evidence from research, along with patient preferences and clinical experience, when making nursing decisions. 1 Nurses are increasingly concerned about ensuring that care is research based, and EBN offers a strategy to help nurses achieve this goal by using 5 steps:

Step 2: translating these areas of uncertainty into focused, searchable questions 2

Step 3: searching the literature for studies that use appropriate designs to help answer the question 3 – 6

Step 4: critically appraising the research

Step 5: changing practice if the research suggests this is necessary.

Previous Notebooks in Evidence-Based Nursing that have described the process of EBN 2 – 6 were written with busy clinical nurses in mind. The next series of Notebooks will explore step 4 in detail—how to assess whether research findings are valid and appropriate for clinical application.

The volume of healthcare literature has been described in graphic terms. Did you know, for example, that Medline has indexed more than 9 million citations in more than 4,000 journals since 1966? 7 Clearly, no individual practitioner can read this volume of research; nor should they try, as only a small proportion of it is of good quality. The trick to keeping abreast of the latest research is to quickly filter the good from the bad. For example, staff of the evidence-based journals office recently calculated that of 136 journals read for 4 evidence-based journals ( Evidence-Based Nursing , Evidence-Based Mental Health , Evidence-Based Medicine , and ACP Journal Club ), an estimated 8% of 21 100 articles passed evidence-based methodologic filters (personal communication, A McKibbon, 20 Mar 2000).

Anyone who has designed or implemented a research study knows that it can be difficult to do well. Researchers, like the rest of us, like to spread “news” and may exaggerate the importance and strength of the findings of their own research. The clinician is faced with the challenge of filtering the thousands of articles published each year into manageable information. This challenge is increased because researchers are notoriously bad at communicating in a language that is accessible to anybody other than researchers. It is not surprising that time and again, nurses tell researchers that they find it extremely difficult, if not impossible to use research findings in their practice.

But don't despair! EBN is possible because (1) there are now a number of clinical evidence sources which present appraised and summarised research for clinicians; (2) good search strategies can identify research that has used an appropriate design to answer your particular clinical question; and (3) critical appraisal is easy to learn, becomes easier with practice, and may be made easier with the Users' Guides series, which will appear in upcoming issues of Evidence-Based Nursing .

Sources of pre-appraised clinical evidence

Clinicians are no longer expected to fend for themselves when trying to deal with the huge volume of research literature. Systematic reviews, for example, are summaries of all the research on a particular topic. An international collaboration, the Cochrane Collaboration, produces and disseminates high quality systematic reviews, and even more importantly, keeps them up to date as new studies become available. The Cochrane Library (available on CD-ROM and via the Internet at http://hiru.mcmaster.ca/cochrane/cochrane/cdsr.htm ) is probably the most important source of reliable information about health care anywhere in the world. The Library contains systematic reviews prepared by Cochrane review groups and others, and a large database of clinical trials. 3

Journals such as Evidence-Based Nursing , Evidence-Based Mental Health , and Evidence-Based Medicine summarise the most valid and clinically applicable research selected from the international research literature. High quality studies and systematic reviews are identified using explicit methodologic criteria and then summarised in the form of structured abstracts. This approach differs from “current awareness” services, which serve to merely announce potentially interesting new research; evidence-based journals use an explicit, quality filtering process to identify only those studies of high methodologic quality. The structured abstracts provide a brief summary of the research question, study design, methods, and main results and the accompanying commentaries help us to interpret the study findings and to suggest how they might be applied in clinical practice.

Clinical Evidence is a new publication that produces and updates rigorous summaries of the research on many common conditions, including, for example, child health and wound care. 8

Sensitive and specific search strategies

Databases such as Medline and CINAHL provide electronic access to the healthcare literature, but they index letters, editorials, and general articles as well as primary studies and systematic reviews. Furthermore, high quality studies and reviews comprise an extremely small proportion of the indexed literature. The trick to searching these databases to find studies to answer your clinical questions lies in using search strategies that have maximum sensitivity (ie, identify a high proportion of the valid and relevant studies) and specificity (ie, do not identify many irrelevant studies). For example, the best single term Medline search to find studies that are likely to have used an appropriate design to evaluate a therapy or intervention is “clinical trial (publication type)”. 4 Of course, any primary studies identified through searches of Medline, CINAHL, or other databases must be appraised for validity and applicability using the critical appraisal techniques that will be addressed in the remainder of this users' guide and the series that follows.

Critical appraisal

Imagine that you have recently been promoted to a new role in your hospital and that you have responsibility for practice development on the medical wards. For the first time in your career you are able to set aside time in your week for reading and keeping abreast of new research—you think you have about 3 hours each week and are keen to use those 3 hours as efficiently has possible. The library is full of medical and nursing journals, but how do you start?

One suggestion is that you start by gathering a list of frequently asked questions ( FAQs ); that is, those questions you often ask yourself during your clinical work, and those often asked by your colleagues. For example:

Is it safe for patients with diabetes to inject insulin directly through their clothing without skin cleansing?

Is it useful to give dietary supplements to critically ill patients on your ward?

Should you be educating and counselling patients who have had a myocardial infarction, while they are still in hospital?

If you apply what you have learned about asking answerable questions to the first question in your list, it becomes 2 :

Is it effective and safe for patients with diabetes to inject insulin through clothing compared with the standard technique of skin cleansing and injection?

The most important lesson to learn about filtering your reading is to read only studies or reviews that have used an appropriate design to answer your particular question. The question about insulin injection is a question of whether a particular treatment (ie, injection of insulin through clothing) is effective and whether it is safe. In an earlier EBN notebook, we learned that randomised controlled trials (RCTs) are the strongest research design for answering this type of question. Systematic reviews of RCTs are better still as they summarise all the RCTs done on a particular topic. 5 Searching Medline using PubMed on the Internet (a free service that can be found at http://www.ncbi.nlm.nih.gov/PubMed/ ) with the terms insulin AND inject* AND cloth* AND clinical trial identifies 2 papers, one of which is a report of a study that appears to directly address our question.

The next step is to look at the study or review and decide whether it is valid and clinically applicable. Some of our medical colleagues have developed an excellent series of Users' Guides to the Medical Literature , and we intend to use these guides as a basis for this series. 9 As you might expect, separate guides exist for different types of clinical questions, as each is best answered using a specific study design. Regardless of the type of study, the clinician should always ask whether the results of the study are valid—that is, is the way the study was done likely to give a true result? The criteria to look for under this broad heading of validity vary, depending on whether the question is about treatment, prognosis, harm, or about understanding complex phenomena, such as feelings or perceptions. The validity checks can be applied quickly, and with a little practice, you will be able to decide efficiently whether to read a paper at all (on the principle that if the methods are not valid, there is no point in reading the paper). For example, the filtering question for a clinical question about whether a treatment works or not is was the assignment of patients to treatments randomised? If a study fails the basic filtering question, you will need to consider carefully whether or not to read it as it is not likely to direct your practice safely.

This approach to filtering your reading helps to keep the amount you do have to read to a manageable amount. If a study passes the validity filtering question and warrants a more detailed review, then there are further questions to help you determine the study validity with greater confidence, and others to help you tease out what the results of the study really mean, and whether they apply to your patients.

Returning to your question of injecting insulin through clothing, a search of Medline on PubMed would have identified a paper by Fleming and colleagues, which compared insulin injection through clothing with conventional techniques. 10 Better still, a search through back copies of Evidence-Based Nursing would have identified that the Fleming study had been summarised in a structured abstract, accompanied by a commentary that addressed the question of clinical applicability. The answer seems to be that injecting insulin through clothing appears to be as safe as conventional techniques and more convenient. 11

To make the most efficient use of the limited time available to keep abreast of clinical evidence, we should filter our reading so as to read only studies or reviews that are likely to provide valid results to our focused clinical questions. We should always look for high quality systematic reviews on a topic for which the author has already identified, appraised, and summarised the relevant studies. Other sources of pre-appraised research, such as the evidence-based journals and Clinical Evidence, can also save us work. Where pre-appraised research is not available or up to date, simple critical appraisal questions can help us to rapidly filter the useful studies from those that contain useless or even harmful information, and help us make decisions about clinical applicability. The figure ⇓ summarises this approach to reading. Critical appraisal checklists for use in appraising different study designs will form the basis of future users' guides.

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• ↵ DiCenso A, Cullum N, Ciliska D. Implementing evidence-based nursing: some misconceptions [editorial]. Evidence-Based Nursing 1998 Apr; 1 : 38 –40. OpenUrl FREE Full Text
• ↵ Flemming K. Asking answerable questions [editorial]. Evidence-Based Nursing 1998 Apr; 1 : 36 –7. OpenUrl FREE Full Text
• ↵ McKibbon KA, Marks S. Searching for the best evidence. Part 1: where to look [editorial]. Evidence-Based Nursing 1998 Jul; 1 : 68 –70. OpenUrl FREE Full Text
• ↵ McKibbon KA, Marks S. Searching for the best evidence. Part 2: searching CINAHL and Medline [editorial]. Evidence-Based Nursing 1998 Oct; 1 : 105 –7. OpenUrl FREE Full Text
• ↵ Roberts J, DiCenso A. Identifying the best research designs to fit the question. Part 1: quantitative designs. Evidence-Based Nursing 1999 Jan; 2 : 4 –6. OpenUrl FREE Full Text
• ↵ Ploeg J. Identifying the best research designs to fit the question. Part 2: qualitative designs. Evidence-Based Nursing 1999 Apr; 2 : 36 –7. OpenUrl FREE Full Text
• ↵ McKibbon A. PDQ: Evidence-based principles and practice . Hamilton: BC Decker, 1999.
• ↵ How clinical evidence is put together [editorial]. Clinical Evidence 1999 Dec; 2 : xv –xvi. OpenUrl
• ↵ Oxman AD, Sackett DL, Guyatt GH. Users' guides to the medical literature. 1. How to get started. JAMA 1993 ; 270 : 2093 –6. OpenUrl CrossRef PubMed Web of Science
• ↵ Fleming DR, Jacober SJ, Vandenberg MA et al . The safety of injecting insulin through clothing. Diabetes Care 1997 ; 20 : 244 –7. OpenUrl Abstract / FREE Full Text
• ↵ Injecting insulin through clothing was safe and convenient [abstract]. Evidence-Based Nursing 1998 Jan; 1 : 12 . Abstract of: Fleming DR, Jacober SJ, Vandenberg MA et al . The safety of injecting insulin through clothing. Diabetes Care 1997; 20 :244–7. OpenUrl FREE Full Text

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Literature Review Overview

What is a Literature Review? Why Are They Important?

A literature review is important because it presents the "state of the science" or accumulated knowledge on a specific topic. It summarizes, analyzes, and compares the available research, reporting study strengths and weaknesses, results, gaps in the research, conclusions, and authors’ interpretations.

Tips and techniques for conducting a literature review are described more fully in the subsequent boxes:

• Literature review steps
• Strategies for organizing the information for your review
• Literature reviews sections
• In-depth resources to assist in writing a literature review
• Templates to start your review
• Literature review examples

Literature Review Steps

Graphic used with permission: Torres, E. Librarian, Hawai'i Pacific University

1. Choose a topic and define your research question

• Try to choose a topic of interest. You will be working with this subject for several weeks to months.
• Ideas for topics can be found by scanning medical news sources (e.g MedPage Today), journals / magazines, work experiences, interesting patient cases, or family or personal health issues.
• Do a bit of background reading on topic ideas to familiarize yourself with terminology and issues. Note the words and terms that are used.
• Develop a focused research question using PICO(T) or other framework (FINER, SPICE, etc - there are many options) to help guide you.
• Run a few sample database searches to make sure your research question is not too broad or too narrow.
• If possible, discuss your topic with your professor. 

2. Determine the scope of your review

The scope of your review will be determined by your professor during your program. Check your assignment requirements for parameters for the Literature Review.

• How many studies will you need to include?
• How many years should it cover? (usually 5-7 depending on the professor)
• For the nurses, are you required to limit to nursing literature?

3. Develop a search plan

• Determine which databases to search. This will depend on your topic. If you are not sure, check your program specific library website (Physician Asst / Nursing / Health Services Admin) for recommendations.
• Create an initial search string using the main concepts from your research (PICO, etc) question. Include synonyms and related words connected by Boolean operators
• Contact your librarian for assistance, if needed.

4. Conduct searches and find relevant literature

• Keep notes as you search - tracking keywords and search strings used in each database in order to avoid wasting time duplicating a search that has already been tried
• Read abstracts and write down new terms to search as you find them
• Check MeSH or other subject headings listed in relevant articles for additional search terms
• Scan author provided keywords if available
• Check the references of relevant articles looking for other useful articles (ancestry searching)
• Check articles that have cited your relevant article for more useful articles (descendancy searching). Both PubMed and CINAHL offer Cited By links
• Revise the search to broaden or narrow your topic focus as you peruse the available literature
• Conducting a literature search is a repetitive process. Searches can be revised and re-run multiple times during the process.
• Track the citations for your relevant articles in a software citation manager such as RefWorks, Zotero, or Mendeley

5. Review the literature

• Read the full articles. Do not rely solely on the abstracts. Authors frequently cannot include all results within the confines of an abstract. Exclude articles that do not address your research question.
• While reading, note research findings relevant to your project and summarize. Are the findings conflicting? There are matrices available than can help with organization. See the Organizing Information box below.
• Critique / evaluate the quality of the articles, and record your findings in your matrix or summary table. Tools are available to prompt you what to look for. (See Resources for Appraising a Research Study box on the HSA, Nursing , and PA guides )
• You may need to revise your search and re-run it based on your findings.

6. Organize and synthesize

• Compile the findings and analysis from each resource into a single narrative.
• Using an outline can be helpful. Start broad, addressing the overall findings and then narrow, discussing each resource and how it relates to your question and to the other resources.
• Cite as you write to keep sources organized.
• Write in structured paragraphs using topic sentences and transition words to draw connections, comparisons, and contrasts.
• Don't present one study after another, but rather relate one study's findings to another. Speak to how the studies are connected and how they relate to your work.

Organizing Information

Options to assist in organizing sources and information :

1. Synthesis Matrix

• helps provide overview of the literature
• information from individual sources is entered into a grid to enable writers to discern patterns and themes
• article summary, analysis, or results
• thoughts, reflections, or issues
• each reference gets its own row
• mind maps, concept maps, flowcharts
• at top of page record PICO or research question
• record major concepts / themes from literature
• list concepts that branch out from major concepts underneath - keep going downward hierarchically, until most specific ideas are recorded
• enclose concepts in circles and connect the concept with lines - add brief explanation as needed

3. Summary Table

• information is recorded in a grid to help with recall and sorting information when writing
• allows comparing and contrasting individual studies easily
• purpose of study
• methodology (study population, data collection tool)

Efron, S. E., & Ravid, R. (2019). Writing the literature review : A practical guide . Guilford Press.

Literature Review Sections

• Lit reviews can be part of a larger paper / research study or they can be the focus of the paper
• Lit reviews focus on research studies to provide evidence
• New topics may not have much that has been published

* The sections included may depend on the purpose of the literature review (standalone paper or section within a research paper)

Standalone Literature Review (aka Narrative Review):

• presents your topic or PICO question
• includes the why of the literature review and your goals for the review.
• provides background for your the topic and previews the key points
• Narrative Reviews: tmay not have an explanation of methods.
• include where the search was conducted (which databases) what subject terms or keywords were used, and any limits or filters that were applied and why - this will help others re-create the search
• describe how studies were analyzed for inclusion or exclusion
• review the purpose and answer the research question
• thematically - using recurring themes in the literature
• chronologically - present the development of the topic over time
• methodological - compare and contrast findings based on various methodologies used to research the topic (e.g. qualitative vs quantitative, etc.)
• theoretical - organized content based on various theories
• provide an overview of the main points of each source then synthesize the findings into a coherent summary of the whole
• present common themes among the studies
• compare and contrast the various study results
• interpret the results and address the implications of the findings
• do the results support the original hypothesis or conflict with it
• provide your own analysis and interpretation (eg. discuss the significance of findings; evaluate the strengths and weaknesses of the studies, noting any problems)
• discuss common and unusual patterns and offer explanations
•  stay away from opinions, personal biases and unsupported recommendations
• summarize the key findings and relate them back to your PICO/research question
• note gaps in the research and suggest areas for further research
• this section should not contain "new" information that had not been previously discussed in one of the sections above
• provide a list of all the studies and other sources used in proper APA 7

Literature Review as Part of a Research Study Manuscript:

• Compares the study with other research and includes how a study fills a gap in the research.
• Focus on the body of the review which includes the synthesized Findings and Discussion

Literature Reviews vs Systematic Reviews

Systematic Reviews are NOT the same as a Literature Review:

Literature Reviews:

• Literature reviews may or may not follow strict systematic methods to find, select, and analyze articles, but rather they selectively and broadly review the literature on a topic
• Research included in a Literature Review can be "cherry-picked" and therefore, can be very subjective

Systematic Reviews:

• Systemic reviews are designed to provide a comprehensive summary of the evidence for a focused research question
• rigorous and strictly structured, using standardized reporting guidelines (e.g. PRISMA, see link below)
• uses exhaustive, systematic searches of all relevant databases
• best practice dictates search strategies are peer reviewed
• uses predetermined study inclusion and exclusion criteria in order to minimize bias
• aims to capture and synthesize all literature (including unpublished research - grey literature) that meet the predefined criteria on a focused topic resulting in high quality evidence

Literature Review Examples

• Breastfeeding initiation and support: A literature review of what women value and the impact of early discharge (2017). Women and Birth : Journal of the Australian College of Midwives
• Community-based participatory research to promote healthy diet and nutrition and prevent and control obesity among African-Americans: A literature review (2017). Journal of Racial and Ethnic Health Disparities

• Vitamin D deficiency in individuals with a spinal cord injury: A literature review (2017). Spinal Cord

Resources for Writing a Literature Review

These sources have been used in developing this guide.

Resources Used on This Page

Aveyard, H. (2010). Doing a literature review in health and social care : A practical guide . McGraw-Hill Education.

Purdue Online Writing Lab. (n.d.). Writing a literature review . Purdue University. https://owl.purdue.edu/owl/research_and_citation/conducting_research/writing_a_literature_review.html

Torres, E. (2021, October 21). Nursing - graduate studies research guide: Literature review. Hawai'i Pacific University Libraries. Retrieved January 27, 2022, from https://hpu.libguides.com/c.php?g=543891&p=3727230

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Nursing Literature Reviews

What is a Literature (Lit) Review? 

A Literature Review is Not: 

• a quick summary of sources
• a grouping of broad, unrelated sources
• a compilation of everything that has ever been written on a topic
• a literature criticism or book review

So, what is it then?

A literature review is an integrated analysis-- not just a summary-- of scholarly writings that are related directly to your research question.  That is, it represents the literature that provides background information on your topic and shows a correspondence between those writings and your research question.

A literature review may be a stand alone work or the introduction to a larger research paper, depending on the assignment.  Rely heavily on the guidelines your instructor has given you.

Why is it important?

A literature review is important because it:

• Explains the background of research on a topic.
• Demonstrates why a topic is significant to a subject area.
• Discovers relationships between research studies/ideas.
• Identifies major themes, concepts, and researchers on a topic.
• Identifies critical gaps and points of disagreement.
• Discusses further research questions that logically come out of the previous studies.

Adapted from:  https://libguides.uwf.edu/c.php?g=215270&p=4439026  by Hillary Fox, University of West Florida,  hfox @uwf.edu.

Creating a Literature Review using the Matrix Method: 

A matrix review allows you to quickly compare and contrast articles in an easy to read format. It can help you to easily spot differences and similarities between journal articles and your nursing research topic. Review matrices are especially helpful for health sciences literature reviews that cover the scope of research over a given amount of time. 

Most literature reviews are set up in this format: 

Chart adapted from the book below: 

• Check out the e-book above for more help in creating a literature review matrix. 

Steps for Conducting a Literature Review

1. Choose Your Topic

• Review your PICO question and think about your central research question. To review the PICO process, please see Kerry Sewell's LibGuide on this subject. 

2. Decide on the scope of your review

• How many studies do you need to look at? 
• How comprehensive should it be? 
• How many years should it cover? 

3. Select the databases you want to use to conduct your searches (See the Databases Tab Above!)

4. Conduct your searches and find the literature. (Keep track of your searches, try using the Search Strategy Lab Notebook!)

• Review the abstracts and conclusions carefully. This will help you decide which articles actually fit the criteria you are looking for. 
• Write down the keywords you used and where you found them. 
• You can also use RefWorks to keep track of your citations. 

5. Review the Literature (This will probably be the most time consuming part)

• What was the research question of the study you are reviewing?  What were the authors trying to discover? 
• Was the research funded by a company or source that could influence the findings? (Such as Colgate® sponsoring a toothpaste study?)
• What were the research methodologies? Analyze the paper's literature review, the samples and variables used, the results and conclusions. Does the research seem to be complete? Could it have been conducted more soundly? What questions does it raise? 
• If there are conflicting studies, why do you think that is? 
• How are the authors of the paper viewed in the field? Has this study been cited by other publications? 

Literature Review Examples

Remember, a lit review provides an intelligent overview of the topic. There may or may not be a method for how studies are collected or interpreted. Lit reviews aren't always labeled specifically as "literature reviews," they may often be embedded with other sections such as an introduction or background. 

• Mentes, J.C., Salem, N., & Phillips, L.R. (2017). Ethnocultural gerontological nursing. An integrative literature review. Journal of Transcultural Nursing, 28(1), 79-97.  https://journals.sagepub.com/doi/pdf/10.1177/1043659615601483
• Rosa, D.F., Carvalho, M.V., & Pereira, N.R, et al. (2019). Nursing care for the transgender population: genders from the perspective of professional practice. Revista Brasilerira de Enfermagem, 72 (Suppl 1), 299-306.  http://www.scielo.br/pdf/reben/v72s1/0034-7167-reben-72-s1-0299.pdf
• Dahlke, S.A., Hunter, K.F., Negrin, K. (2019). Nursing practice with hospitalized older people: Safety and harm. International Journal of Older People Nursing, 14 (1), Article e1220.  https://onlinelibrary.wiley.com/doi/full/10.1111/opn.12220

Adapted from:  https://libguides.uwf.edu/c.php?g=215270&p=4439026  by Hillary Fox, University of West Florida, [email protected].

Carrie Forbes, MLS

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Open Access

Study Protocol

The role of advanced practice nurses in improving healthcare outcomes for patients with chronic kidney disease: A scoping review protocol

Roles Conceptualization, Data curation, Investigation, Methodology, Project administration, Writing – original draft

* E-mail: [email protected]

Affiliation Department of Nursing, Yamagata Tokushukai Hospital, Yamagata, Yamagata, Japan

Roles Conceptualization, Formal analysis, Investigation, Methodology, Writing – original draft

Affiliation Graduate School of Medicine, Nagoya University, Nagoya, Aichi, Japan

Roles Conceptualization, Supervision, Writing – review & editing

Affiliation Graduate School of Health and Environment Sciences, Tohoku Bunka Gakuen University, Sendai, Miyagi, Japan

Contributed equally to this work with: Tomoko Araki, Hidetaka Sato, Takao Watanabe

Roles Supervision, Writing – review & editing

Affiliation Department of Urology, Yamagata Tokushukai Hospital, Yamagata, Yamagata, Japan

• Hanako Nozu, 
• Haruka Tamura, 
• Takemi Kudo, 
• Tomoko Araki, 
• Hidetaka Sato, 
• Takao Watanabe, 
• Isoji Sasagawa

• Published: April 4, 2024
• https://doi.org/10.1371/journal.pone.0301676
• Reader Comments

Introduction

The number of patients with chronic kidney disease is increasing worldwide; previous studies have suggested that advanced practice nurses, including nurse practitioners and clinical nurse specialists, with expert practice skills can provide high-quality care and solve complex healthcare problems. In general, nurse practitioners are generalist nurses who work as autonomous clinicians with whole personal care. Clinical nurse specialists, in contrast, are nurses with advanced nursing knowledge and skills for individuals or specific populations. Their roles are independent and different; however, similarities exist in their role in potentially improving healthcare outcomes. Although two previous studies described the role of nephrology nurse practitioners, they were systematic reviews, and their outcomes were limited. To clarify the overall aspect of advanced practice nurses’ role, it is necessary to extract the studies illustrating advanced practice nurses’ practices for patients with chronic kidney disease.

This study aims to map the literature describing the role of advanced practice nurses in improving healthcare outcomes for patients with chronic kidney disease.

Materials and methods

This scoping review will be conducted using the Joanna Briggs Institute methodology for scoping review. Online databases will be searched across MEDLINE (PubMed), CINAHL (EBSCOhost), Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, and Web of Science. Only studies published in English will be included, and no date limit will be set. Chronic kidney disease, renal replacement therapy, and advanced practice nurses as keywords and related search terms will be used. Two independent reviewers will screen the title and abstract/full-text; in case of discrepancy, a third reviewer will make the final decision. The results will be extracted and presented following the review question concerning the study characteristics, patients’ characteristics, condition of chronic kidney disease, and role of advanced practice nurses.

Citation: Nozu H, Tamura H, Kudo T, Araki T, Sato H, Watanabe T, et al. (2024) The role of advanced practice nurses in improving healthcare outcomes for patients with chronic kidney disease: A scoping review protocol. PLoS ONE 19(4): e0301676. https://doi.org/10.1371/journal.pone.0301676

Editor: Udoka Okpalauwaekwe, University of Saskatchewan, CANADA

Received: June 9, 2023; Accepted: March 15, 2024; Published: April 4, 2024

Copyright: © 2024 Nozu et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data sharing not applicable as no datasets generated and/or analyzed for this protocol.

Funding: The funders did not and will not have a role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

The prevalence of all stages of chronic kidney disease (CKD) in the general population is 9–15% [ 1 , 2 ]. According to the report of the Global Burden of Disease, the global prevalence of CKD at all ages has increased by 29.3% (95% UI 26.4 to 32.6) from 1990 to 2017 [ 1 ]. CKD is a progressive chronic disease; if patients have multiple comorbidities that progress to renal dysfunction, the status of the kidney progresses more rapidly [ 3 , 4 ]. When the kidneys function inefficiently, waste products and extra fluid accumulate in the body, resulting in a myriad of health problems, including cardiac disease and hypertension [ 5 ]. The incidence rate of treated end-stage renal disease (ESRD) is relatively stable, has decreased or increased slightly in some high-income countries, but has increased substantially in others, with a global trend [ 6 ]. ESRD negatively affects patients’ quality of life [ 7 , 8 ], leading to increased hospitalization and mortality [ 9 ]. It is important that patients with CKD, which is a chronic disease, maintain their daily life and quality of life while controlling complications and receiving necessary treatment; however, to accomplish these tasks, high-quality care is required.

Advanced practice nurses (APNs) are expected to provide a high level of care and be able to cope with the complexity of the problem. APNs, such as nurse practitioners (NPs) and clinical nurse specialists (CNSs), are the most common. The International Council of Nursing describes APNs as “a generalist or specialized nurse who has acquired, through additional graduate education (at least a master’s degree), the expert knowledge base, complex decision-making skills, and clinical competencies for advanced nursing practice [ 10 ]. NPs have provided primary, acute, and specialty healthcare to a diverse group of patients of all ages for nearly half a century [ 11 ]. The NP education program was established at the University of Colorado in 1965 to increase the primary care workforce and integrate the content into a nursing master’s program [ 12 ]. Conversely, the pioneer CNS program was developed in 1956 by Hildegard Peplau in the United States [ 13 – 15 ]. CNSs are expert clinicians focused on a specialist area and provide high-quality care with clinical excellence in multiple healthcare settings [ 10 , 14 ]. NPs and CNSs have autonomy and perform different functions, but they share the core of advanced practice competencies and provide high-quality care [ 16 , 17 ]. Both have overlapping roles in the clinical setting and contribute to solving complex patient problems as APNs [ 18 – 20 ]. In recent years, APNs have spread and developed worldwide [ 21 ].

In the nephrology setting, APNs have also provided high-level care for patients with CKD. In the United States, the presence of nephrology APNs in dialysis units was first reported in 1976 [ 22 ]. In the early 2000s, some literature described the role of nephrology APNs and showed their practice [ 23 – 25 ]. Nowadays, nephrology APNs have contributed to improving the healthcare outcomes of patients with all CKD stages who are not yet on dialysis [ 26 – 28 ], are on dialysis [ 29 , 30 ], or are pre- or post-kidney transplant [ 31 , 32 ]. We believe it is worthwhile to identify and present such cumulative practice of nephrology APNs. This is because nephrology APNs may have the opportunity to access and share knowledge regarding their roles that they may not be aware of. Of these roles, improving healthcare outcomes for patients with CKD is directly linked to promoting their well-being.

We have identified two systematic reviews that have been done on similar topics [ 33 , 34 ]. Xu et al. compared nurse- and physician-led care for patients with CKD. This meta-analysis showed that a nurse-coordinated care model reduced the risks of composite outcomes, including death, the occurrence rate of end-stage renal disease, and doubled serum creatinine [ 33 ]. McCrory et al. reported the outcomes of patients with CKD stages 2–4, where NPs were the primary workforce. The results of this review reported that NPs provided care equal to or superior to that of physicians in terms of blood pressure control, low-density lipoprotein, phosphate, and parathormone levels, as well as glycemic control [ 34 ]. NPs did do additional roles under the indirect supervision of a nephrologist in these studies. However, there are a few limitations to these studies. First, because the systematic review was intended to integrate previous research and specific conditions with strict eligibility criteria, the role of APNs for patients on peritoneal dialysis and pre- or post- kidney transplant was excluded. Second, only the NP-level nursing care providers were included in the studies. Then, we cannot view the practice of CNS-level nursing. We consider that there are some gaps in these reviews to describe the role of APNs in improving the healthcare outcomes for CKD. As such, we considered a scoping review to be an appropriate method to research this topic, as it deals with a wide range of subjects and allows better identification of gaps in the current literature. In addition, the results of this scoping review will help APNs access the literature describing their role in nephrology.

Review question

What is the role of APNs that could improve healthcare outcomes for patients with CKD, and what are their outcomes?

This study aims to map the literature describing the role of APNs in improving healthcare outcomes of patients with CKD. This scoping review will be conducted by the Joanna Briggs Institute (JBI) methodology for scoping reviews [ 35 ]. The eligibility criteria for study selection are described in terms of participants, concept, context (PCC) framework, and type of sources following JBI methods. The study protocol is reported in accordance with Preferred Reporting Items for Systematic Review and Meta-analysis Protocols (PRISMA-P) ( S1 Checklist ) [ 36 ]. In addition, we will use the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) ( S2 Checklist ) [ 37 , 38 ] to ensure that this scoping review complies with the scoping review guidelines.

Eligibility criteria

Participants..

The review will consider all literature that includes patients aged >18 years with all stages of CKD and describe improved healthcare outcomes after receiving some care from APNs. We will include patients with ESRD receiving any type of renal replacement therapy and include studies of conservative therapy for ESRD, if available. Renal transplantation therapy will be also included in this scoping review.

APNs are “a generalist or specialized nurse who has acquired, through additional graduate education (at least a master’s degree), the expert knowledge base, complex decision-making skills, and clinical competencies for advanced nursing practice.” Globally, the most common APNs are NPs and CNSs [ 10 ]. The title of APNs, including NPs/CNSs, differs from each country: advanced practice registered nurse, specialist nurse, nurse clinician, etc [ 18 , 21 ]. Additionally, the definition of APNs varies from country to country, but generally, the education is at the master’s level or higher [ 18 , 21 ]. In this study, we used education at the master’s level or higher as the basis for APNs. For these reasons, the definition of APNs in this study emphasizes concepts rather than titles.

The review will include literature wherein patients received care from APNs in collaboration with specialists in other disciplines.

Our review will provide an overview of the role of nephrology APNs in improving healthcare outcomes for CKD. The role of APNs includes direct care and indirect care; ordering, performing, supervising, and interpreting diagnostic and laboratory tests; making diagnoses; initiating and managing treatment, including prescribing medication and non-pharmacologic treatments; coordinating care; counseling; and educating patients, but not limited to [ 10 , 11 ]. It could also include demonstrating leadership and establishing health care services [ 10 ]. We assume that some of the studies that will be screened in our review will not have improved healthcare outcomes significantly. However, it is considered the studies that have not improved healthcare outcomes also have very important findings for APNs. Therefore, we will exclude these studies but will summarize them as appendixes.

The review will consider studies conducted in any facility and country. We will consider studies conducted in institutional and non-institutional settings, including hospitals, public or private community clinics, long-term care facilities, and home care.

Types of sources

This scoping review will consider experimental and quasi-experimental study designs, including randomized controlled trials, non-randomized controlled trials, before and after studies, and interrupted time-series studies. Additionally, analytical observational studies, including prospective and retrospective cohort, case-control, and analytical cross-sectional studies, will be considered for inclusion. Finally, this review will consider descriptive observational study designs, including case series, individual case reports, and descriptive cross-sectional studies but not limited to. Qualitative studies will also be considered if they focus on data including, but not limited to, designs, such as phenomenology, grounded theory, ethnography, qualitative description, and action research. Systematic reviews, meta-analysis, and trial protocols will be excluded. However, references cited in systematic reviews will be deemed suitable for inclusion.

Gray literature and unpublished studies will also be included. However, text and opinion papers will not be considered for inclusion in this scoping review.

Search strategy

To provide a comprehensive and up-to-date search, a preliminary search of existing systematic reviews about this topic was conducted using the MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews databases on February 20, 2024.

The search strategy will aim to locate both published and unpublished studies. A three-step search will be utilized for each component of this review [ 35 ].

An initial limited search of MEDLINE (via PubMed) and CINAHL (via EBSCOhost) will be performed to identify articles on the topic. Thereafter, the words in the titles and abstracts of the relevant articles and the index terms used to describe the articles will be used to develop a complete search strategy. This search strategy will be adapted for each information source, including all the identified keywords and index terms.

A second search using all identified keywords and index terms will be performed across all included databases. An example of a search strategy conducted by MEDLINE (via PubMed) on February 26, 2024, is shown in S1 Table . The databases to be searched will include MEDLINE (via PubMed) and CINAHL (via EBSCOhost), Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials (CENTRAL; via EBSCOhost), and Web of Science. Databases of gray literature include ProQuest and the first 300 hits on Google Scholar because our initial search results indicate that approximately 300 papers will be suitable for the present study [ 39 ]. We will deal with unpublished studies as well; ongoing studies or completed but unpublished studies. The Cochrane Handbook for Systematic Reviews of Interventions recommends using the Trial Registry database as a search strategy for these unpublished studies. Therefore, ClinicalTrials gov. and the International Clinical Trials Registry Platform will be used as our search strategy for unpublished studies.

Third, the reference lists of all the identified reports and articles selected for this scoping review will be screened for additional studies.

Only articles published in English will be included because of the lack of translation services.

When noting missing data or poorly reported items, we aim to contact the author by e-mail, which is considered the most efficient tool [ 40 , 41 ], upon checking the contact information listed in the eligible study or most recent study. Depending on the case, we may consider contacting the authors’ affiliation. We will continue to contact the authors until the completion of the analysis of our scoping review [ 40 , 41 ].

Study/Source of evidence selection

Following the search, all identified citations will be collated and uploaded into Mendeley V1.19.8 (Mendeley Ltd., Elsevier, Netherlands), and duplicates will be removed. Following a pilot test, titles and abstracts will be screened by two or more independent reviewers to assess whether they meet the inclusion criteria for the review. Potentially relevant sources will be retrieved, and their citation details will be imported into the JBI System for the Unified Management, Assessment, and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full texts of the selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. This scoping review will record and report reasons for excluding sources of evidence that do not meet the inclusion criteria in the full text. Any disagreements that arise between the reviewers at each stage of the selection process will be resolved through discussion; if there is a difference in opinion, the decision of a third reviewer will be final.

The search results and study inclusion process will be reported in full in the final scoping review and presented in a PRISMA-ScR flow diagram [ 37 ].

Data extraction

Data will be extracted from the papers included in the review using a charting table aligned by two independent reviewers to the objective and question of this research S2 Table , as indicated by the methodology for scoping reviews developed by JBI [ 35 ]. We will extract data about; study characteristics (author, publication year, country, study design, main result), patients’ characteristics (sample size, age, location of patient), condition of CKD (CKD stages of patient, Renal Replacement Therapy type), the role of APNs (title of APNs, types of healthcare provider, characteristics of APNs roles. The draft data extraction tool will be modified and revised as necessary while extracting data from the included sources. The modifications are detailed in this scoping review. Any reviewer disagreements will be resolved through discussion or by a third reviewer.

Data analysis and presentation

The overview of the reviewed material, where possible and appropriate, will be presented in tabular form along with a narrative summary that aligns with the objectives and scope of this review. A descriptive summary will accompany the tabulated and charted results and describe how the results relate to the review’s objectives and questions. A summary of each article will include the author(s) name, year of publication, country of origin, population, sample size, methodology, concepts of interest, and key findings related to the scoping review question.

CKD is a common chronic disease, and healthcare providers must provide appropriate care. It is expected that advanced practice nursing will solve complex matters for CKD. APNs have provided high-quality care and accumulated evidence by researching and reporting their own practices. We suggest extracting the literature on the role of nephrology APNs in improving healthcare outcomes for all stages of CKD. The results of this scoping review will help nephrology APNs develop their role and identify new gaps in unreported areas.

There is no common understanding of the role of APNs because their scope of practice differs in different countries [ 42 – 44 ]. It is difficult to synthesize these differences in this scoping review. However, we believe that to map this heterogeneous literature, a scoping review is the best method. The methods used in this scoping review protocol are based on the JBI methodology for scoping reviews. In addition, PRISMA-P and PRISMA-ScR were used to ensure that this Scoping review is in accordance with these guidelines. We consider this a methodological limitation because the search strategy may not fully cover all publications and is limited by language and databases. Additionally, the scope of APNs practice in each country is different; hence, the results we are trying to show in this study may not be directly applicable.

Supporting information

S1 checklist. prisma-p 2015 checklist..

https://doi.org/10.1371/journal.pone.0301676.s001

S2 Checklist. PRISMA-ScR 2018 checklist.

https://doi.org/10.1371/journal.pone.0301676.s002

S1 Table. Search strategies.

https://doi.org/10.1371/journal.pone.0301676.s003

S2 Table. Data extraction.

https://doi.org/10.1371/journal.pone.0301676.s004

Acknowledgments

We thank Editage ( www.editage.jp ) for English-language editing.

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• 10. International Council of Nurses. Guidelines on advanced practice nursing 2020. 2020. https://npac-aiipc.org/wp-content/uploads/2020/07/ICN_APN-Report-EN.pdf .
• 11. American Association of Nurse Practitioners. All About NPs. https://www.aanp.org/about/all-about-nps .
• 38. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D et al. PRISMA-ScR CHECKLIST ITEMS. 2019;11–12. http://www.prisma-statement.org/documents/PRISMA-ScR Fillable Checklist.pdf .
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• Open access
• Published: 28 March 2024

Nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care to nursing home residents– a qualitative study

• Rachel Gilbert 1 &
• Daniela Lillekroken   ORCID: orcid.org/0000-0002-7463-8977 1  

BMC Nursing volume  23 , Article number:  216 ( 2024 ) Cite this article

229 Accesses

Metrics details

Over the years, caring has been explained in various ways, thus presenting various meanings to different people. Caring is central to nursing discipline and care ethics have always had an important place in nursing ethics discussions. In the literature, Joan Tronto’s theory of ethics of care is mostly discussed at the personal level, but there are still a few studies that address its influence on caring within the nursing context, especially during the provision of end-of-life care. This study aims to explore nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents.

This study has a qualitative descriptive design. Data were collected by conducting five individual interviews and one focus group during a seven-month period between April 2022 and September 2022. Nine nurses employed at four Norwegian nursing homes were the participants in this study. Data were analysed by employing a qualitative deductive content analysis method.

The content analysis generated five categories that were labelled similar to Tronto’s five phases of the care process: (i) caring about, (ii) caring for, (iii) care giving, (iv) care receiving and (v) caring with. The findings revealed that nurses’ autonomy more or less influences the decision-making care process at all five phases, demonstrating that the Tronto’s theory contributes to greater reflectiveness around what may constitute ‘good’ end-of-life care.

Conclusions

Tronto’s care ethics is useful for understanding end-of-life care practice in nursing homes. Tronto’s care ethics provides a framework for an in-depth analysis of the asymmetric relationships that may or may not exist between nurses and nursing home residents and their next-of-kin. This can help nurses see and understand the moral dimension of end-of-life care provided to nursing home residents during their final days. Moreover, it helps handle moral responsibility around end-of-life care issues, providing a more complex picture of what ‘good’ end-of-life care should be.

Peer Review reports

In recent decades, improving end-of-life care has become a global priority [ 1 ]. The proportion of older residents dying in nursing homes is rising across the world [ 2 ], resulting in a significant need to improve the quality of end-of-life care provided to residents. Therefore, throughout the world, nursing homes are becoming increasingly important as end-of-life care facilities [ 3 ]. As the largest professional group in healthcare [ 4 ], nurses primarily engage in direct care activities [ 5 ] and patient communication [ 6 ] positioning them in close proximity to patients. This proximity affords them the opportunity to serve as information brokers and mediators in end-of-life decision-making [ 7 ]. They also develop trusting relationships with residents and their next-of-kin, relationships that may be beneficial for the assessment of residents and their next-of-kin’s needs [ 8 ]. Moreover, nurses have the opportunity to gain a unique perspective that allows them to become aware of if and when a resident is not responding to a treatment [ 9 ].

When caring for residents in their critical end-of-life stage, nurses form a direct and intense bond with the resident’s next-of-kin, hence nurses become central to end-of-life care provision and decision-making in nursing homes [ 10 ]. The degree of residents and their next-of-kin involvement in the decision-making process in practice remains a question [ 11 ]. Results from a study conducted in six European countries [ 12 ], demonstrate that, in long-term care facilities, too many care providers are often involved, resulting in difficulties in reaching a consensus in care. Although nurses believe that their involvement is beneficial to residents and families, there is a need for more empirical evidence of these benefits at the end-of-life stage. However, the question of who should be responsible for making decisions is still difficult to answer [ 13 ]. One study exploring nurse’s involvement in end-of-life decisions revealed that nurses experience ethical problems and uncertainty about the end-of-life care needs of residents [ 14 ]. Another study [ 10 ] reported patients being hesitant to discuss end-of‐life issues with their next-of-kin, resulting in nurses taking over; thus, discussing end-of-life issues became their responsibility. A study conducted in several nursing homes from the UK demonstrated that ethical issues associated with palliative care occurred most frequently during decision-making, causing greater distress among care providers [ 15 ].

Previous research has revealed that there are some conflicts over end-of-life care that consume nurses’ time and attention at the resident’s end-of-life period [ 16 ]. The findings from a meta-synthesis presenting nurses’ perspectives dealing with ethical dilemmas and ethical problems in end-of-life care revealed that nurses are deeply involved with patients as human beings and display an inner responsibility to fight for their best interests and wishes in end-of-life care [ 17 ].

Within the Norwegian context, several studies have explored nurses’ experiences with ethical dilemmas when providing end-of-life care in nursing homes. One study describing nurses’ ethical dilemmas concerning limitation of life-prolonging treatment suggested that there are several disagreements between the next-of-kin’s wishes and what the resident may want or between the wishes of the next-of-kin and what the staff consider to be right [ 18 ]. Another study revealed that nurses provide ‘more of everything’ and ‘are left to dealing with everything on their own’ during the end-of-life care process [ 19 ] (p.13) . Several studies aiming to explore end-of-life decision-making in nursing homes revealed that nurses experience challenges in protecting the patient’s autonomy regarding issues of life-prolonging treatment, hydration, nutrition and hospitalisation [ 20 , 21 , 22 ]. Other studies conducted in the same context have described that nurses perceive ethical problems as a burden and as barriers to decision-making in end-of-life care [ 8 , 23 ].

Nursing, as a practice, is fundamentally grounded in moral values. The nurse-patient relationship, central to nursing care provision, holds ethical importance and significance. It is crucial to recognise that the context within which nurses practice can both shape and be shaped by nursing’s moral values. These values collectively constitute what can be termed the ethical dimension of nursing [ 24 ]. Nursing ethos and practices are rooted in ethical values and principles; therefore, one of the position statements of the International Council of Nurses [ 25 ] refers to nurses’ role in providing care to dying patients and their families as an inherent part of the International Classification for Nursing Practice [ 26 ] (e.g., dignity, autonomy, privacy and dignified dying). Furthermore, ethical competence is recognised as an essential element of nursing practice [ 27 ], and it should be considered from the following viewpoints: ethical decision-making, ethical sensitivity, ethical knowledge and ethical reflection.

The term ‘end-of-life care’ is often used interchangeably with various terms such as terminal care, hospice care, or palliative care. End-of life care is defined as care ‘to assist persons who are facing imminent or distant death to have the best quality of life possible till the end of their life regardless of their medical diagnosis, health conditions, or ages’ [ 28 ] (p.613) . From this perspective, professional autonomy is an important feature of nurses’ professionalism [ 29 ]. Professional autonomy can be defined based on two elements: independence in decision-making and the ability to use competence, which is underpinned by three themes: shared leadership, professional skills, inter- and intraprofessional collaboration and a healthy work environment [ 30 ].

As presented earlier, research studies have reported that nurses experience a range of difficulties or shortcomings during the decision-making process; therefore, autonomous practice is essential for safe and quality care [ 31 ]. Moreover, autonomous practice is particularly important for the moral dimension in end-of-life care, where nurses may need to assume more responsibility in the sense of defining and giving support to matters that are at risk of not respecting ethical principles or fulfilling their ethical, legal and professional duties towards the residents they care for.

To the best of the researchers’ knowledge, little is known about nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents; therefore, the aim of this study is to explore nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents.

Theoretical framework

Joan Tronto is an American political philosopher and one of the most influential care ethicists. Her theory of the ethics of care [ 32 , 33 , 34 ] has been chosen as the present study’s theoretical framework. The ethics of care is a feminist-based ethical theory, focusing on caring as a moral attitude and a sensitive and supportive response of the nurse to the situation and circumstances of a vulnerable human being who is in need of help [ 33 , 34 , 35 ]. In this sense, nurses’ caring behaviour has the character of a means—helping to reach the goal of nursing practice—which here entails providing competent end-of-life care.

Thinking about the process of care, in her early works [ 32 , 33 , 34 ], Tronto proposes four different phases of caring and four elements of care. Although the phases may be interchangeable and often overlap with each other, the elements of care are fundamental to demonstrate caring. The phases of caring involve cognitive, emotional and action strategies.

The first phase of caring is caring about , which involves the nurse’s recognition of being in need of care and includes concern, worry about someone or something. In this phase, the element of care is attentiveness, which entails the detection of the patient and/or family need.

The second phase is caring for , which implies nurses taking responsibility for the caring process. In this phase, responsibility is the element of care and requires nurses to take responsibility to meet a need that has been identified.

The third phase is care giving , which encompasses the actual physical work of providing care and requires direct engagement with care. The element of care in this phase is competence, which involves nurses having the knowledge, skills and values necessary to meet the goals of care.

The fourth phase is care receiving , which involves an evaluation of how well the care giving meets the caring needs. In this phase, responsiveness is the element of care and requires the nurse to assess whether the care provided has met the patient/next-of-kin care needs. This phase helps preserve the patient–nurse relationship, which is a distinctive aspect of the ethics of care [ 36 ].

In 2013, Tronto [ 35 ] updated the ethics of care by adding a fifth phase of caring— caring with —which is the common thread weaving among the four phases. When care is responded to through care receiving and new needs are identified, nurses return to the first phase and begin again. The care elements in this phase are trust and solidarity. Within a healthcare context, trust builds as patients and nurses realise that they can rely on each other to participate in their care and care activities. Solidarity occurs when patients, next-of-kin, nurses and others (i.e., ward leaders, institutional management) engage in these processes of care together rather than alone.

To the best of our knowledge, these five phases of caring and their elements of caring have never been interpreted within the context of end-of-life care. The ethics of care framework offers a context-specific way of understanding how nurses’ professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents, revealing similarities with Tronto’s five phases, which has motivated choosing her theory.

Aim of the study

The present study aims to explore nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents.

The current study has a qualitative descriptive design using five individual interviews and one focus group to explore nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents.

Setting and participants

The setting for the study was four nursing homes located in different municipalities from the South-Eastern region of Norway. Nursing homes in Norway are usually public assisted living facilities and offer all-inclusive accommodation to dependent individuals on a temporary or permanent basis [ 37 ]. The provision of care in the Norwegian nursing homes is regulated by the ‘Regulation of Quality of Care’ [ 38 ], aiming to improve nursing home residents’ quality of life by offering quality care that meets residents’ fundamental physiological and psychosocial needs and to support their individual autonomy through the provision of daily nursing care and activities tailored to their specific needs, and, when the time comes, a dignified end-of-life care in safe milieu.

End-of-life care is usually planned and provided by nurses having a post graduate diploma in either palliative nursing or oncology nursing– often holding an expert role, hence ensuring that the provision of end-of-life care meets the quality criteria and the resident’s needs and preferences [ 39 ].

To obtain rich information to answer the research question, it was important to involve participants familiar with the topic of study and who had experience working in nursing homes and providing end-of-life care to residents; therefore, a purposive sample was chosen. In this study, a heterogeneous sampling was employed, which involved including participants from different nursing homes with varying lengths of employment and diverse experiences in providing end-of-life care to residents. This approach was chosen to gather data rich in information [ 40 ]. Furthermore, when recruiting participants, the first author was guided by Malterud et al.’s [ 41 ] pragmatic principle, suggesting that the more ‘information power’ the participants provided, the smaller the sample size needed to be, and vice versa. Therefore, the sample size was not determined by saturation but instead by the number of participants who agreed to participate. However, participants were chosen because they had particular characteristics such as experience and roles which would enable understanding how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents.

The inclusion criteria for the participants were as follows: (i) to be a registered nurse, (ii) had a minimum work experience of two years employed at a nursing home, and (iii) had clinical experience with end-of-life/palliative care. To recruit participants, the first author sent a formal application with information about the study to four nursing homes. After approval had been given, the participants were asked and recruited by the leadership from each nursing home. The participants were then contacted by the first author by e-mail and scheduled a time for meeting and conducting the interviews.

Ten nurses from four different nursing homes were invited to participate, but only nine agreed. The participants were all women, aged between 27 and 65 and their work experience ranged from 4 to 21 years. Two participants had specialist education in palliative care, and one was currently engaged in a master’s degree in nursing science. Characteristics of the participants are presented in Table  1 :

Data collection methods

Data were collected through five semistructured individual and one focus group interviews. Both authors conducted the interviews together. The study was carried out between April and September 2022. Due to the insecurity related to the situation caused by the post-SARS-CoV-2 virus pandemic and concerns about potential new social distancing regulations imposed by the Norwegian government, four participants from the same nursing home opted for a focus group interview format. This decision was motivated by a desire to mitigate the potential negative impact that distancing regulations might have on data collection. The interviews were guided by an interview guide developed after reviewing relevant literature on end-of-life care and ethical dilemmas. The development of the interview guide consisted of five phases: (i) identifying the prerequisites for using semi-structured interviews; (ii) retrieving and using previous knowledge; (iii) formulating the preliminary semi-structured interview guide; (iv) pilot testing the interview guide; and (v) presenting the complete semistructured interview guide [ 42 ]. The interview guide was developed by both authors prior to the onset of the project and consisted of two demographic questions and eight main open-ended questions. The interview guide underwent initial testing with a colleague employed at the same nursing home as the first author. After the pilot phase in phase four, minor language revisions were made to specific questions to bolster the credibility of the interview process and ensure the collection of comprehensive and accurate data. The same interview guide was used to conduct individual interviews and focus group (Table  2 ).

The interviews were all conducted in a quiet room at a nursing home. Each interview lasted between 30 and 60 min and were digitally recorded. The individual interviews were transcribed verbatim by the first author. The focus group interview was transcribed by the second author.

Ethical perspectives

Prior to the onset of the data collection, ethical approval and permission to conduct the study were sought from the Norwegian Agency for Shared Services in Education and Research (Sikt/Ref. number 360,657) and from each leader of the nursing home. The study was conducted in accordance with the principles of the Declaration of Helsinki of the World Medical Association [ 43 ]: informed consent, consequences and confidentiality. The participants received written information about the aim of the study, how the researcher would ensure their confidentiality and, if they chose to withdraw from the study, their withdrawal would not have any negative consequences for their employment at nursing homes. Data were anonymised, and the digital records of the interviews were stored safely on a password-protected personal computer. The transcripts were stored in a locked cabinet in accordance with the existing rules and regulations for research data storage at Oslo Metropolitan University. The participants did not receive any financial or other benefits from participating in the study. Written consent was obtained prior to data collection, but verbal consent was also provided before each interview. None of the participants withdrew from the study.

Data analysis

The data were analysed by employing a qualitative deductive content analysis, as described by Kyngäs and Kaakinen [ 44 ]. Both researchers independently conducted the data analysis manually. The empirical data consisted of 63 pages (34,727 words) of transcripts from both individual and focus group interviews. The deductive content analysis was performed in three steps: (i) preparation, (ii) organisation and (iii) reporting of the results.

During the first step—preparation—each researcher, individually, read the transcripts several times to get an overview of the data and select units of analysis by searching for recurring codes and meanings and to carefully compare the similarities and differences between coded data. These codes were labelled independently by both researchers and placed into an analysis matrix.

During the next step—organisation—the researchers met and discussed and then compared and revised the labels several times until they agreed about the preliminary findings. During the interpretative process towards developing an understanding of the empirical data, the content of the labels referred to nurses’ perceptions about how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents, revealing similarities with the five phases of Tronto’s theory of ethics of care [ 32 , 33 ], thus assigning them to the five phases of the theory. Following this final refinement, one main category and five categories, each supported by several subcategories, were identified, as presented in Table  3 .

Reporting the results was the last step in the analysis. To enhance the understanding of the study’s findings, the findings are presented with supporting excerpts from the participants.

In qualitative studies, trustworthiness is the main parameter for appraising the rigour of the study [ 45 ]. To enhance the trustworthiness of the study, four criteria—credibility, transferability, dependability and confirmability, as described by Lincoln and Guba [ 46 ]—were applied.

To support credibility, a detailed description of the sample and the sampling process was provided. Furthermore, the interview guide and the questions that the participants were asked during the interviews are made available to the readers. Moreover, although the data were collected from five individual interviews and one focus group, triangulation of two data collection methods allowed researchers to ensure that the study is based on diverse perceptions and experiences, strengthening the credibility and impact of the study’s findings [ 47 ].

Detailed information about the sample and setting supports the assessment of the transferability of the findings. In this way, the readers can recognise and evaluate whether the findings would be applicable to similar contexts with a similar sample. Quotes from the participants’ statements are given to support the findings. Each quote ends with a number representing the code that each nurse was given before conducting the interviews (i.e., Participant in interview 1, PI1 or participant 6 in focus group interview, P6FG).

To increase dependability, the same interview guide was used to ask all participants the same questions. Dependability was also increased by the researchers reading and analysing the interviews independently and then checking the consistency of the data analysis technique with each other and discussing the analytical process until a consensus was reached.

To enhance confirmability, excerpts from the participants’ statements were included when presenting the findings, thus verifying the concordance of findings with the raw data. This demonstrates that the data were not based on preconceived notions.

Trustworthiness was also supported by member checking, meaning that the researchers sent the participants the transcripts of the interviews immediately after data collection; then, the interviews were transcribed. The participants were asked to review the transcripts and check the accuracy of the data; hence, they had the opportunity to add, remove or clarify their statements. Only one participant answered this request, stating that the transcripts were accurate, and she did not have any further comments. Despite encountering a suboptimal response from participants, the authors remain confident in the trustworthiness of the study. Rich data, derived from a combination of individual and focus group interviews, yielded diverse and nuanced responses from participants, reinforcing the credibility of the findings.

Reflexivity is the researcher’s reflection on their position during the research process [ 48 ]. Both researchers have clinical experience in providing end-of-life care to nursing home residents. Therefore, it was critical to be aware of the impact that their clinical backgrounds might have on the research process from information seeking during the analysis of data and discussion of the findings. To avoid early interpretation of the data, the researchers were aware of their preunderstanding and tried to put it on hold. Both authors engaged in discussions regarding apprehensions and reflections, actively participating in the triangulation process throughout the study to prevent potential bias during data collection, analysis, and interpretation. The theoretical framework was brought in the end of the analysis process, which helped label the emerged findings.

The analysis of the empirical data combined with an ethical reflection helped researchers to identify and understand the moral dimension of nurses’ experiences with end-of-life care provided to nursing home residents. During the analysis, an overarching category emerged– ‘The moral dimension of the provision of end-of life care’– describing nurses’ perceptions about how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents. The participants agreed that end-of-life care is a care process that undergoes several phases, with each phase having its own ethical quality or its own element of care, here according to Tronto’s moral qualities [ 34 ]. In the following section, the findings are described using Tronto’s identified moral qualities for each of the five phases of the care process [ 32 , 33 , 34 , 35 ].

Caring about—being attentive

For the participants, being autonomous was perceived as a feature that increased their awareness of the resident’s caring needs during their last days of life. The participants agreed that the caring process involves paying attention, listening and recognising residents’ unspoken needs. Moreover, it implies nurses being able to make autonomous decisions when deciding which needs to care about at one particular moment.

The participants agreed that the core values of providing end-of-life care were to alleviate suffering, maintain dignity and provide comfort care. The participants perceived caring about as having sufficient knowledge, along with the experience and autonomy in practice, as well as providing comprehensive end-of-life care for residents. For the participants, caring about during the end-of-life process means them being present and dedicated. This implies nurses carefully observing, autonomously acting, and making decisions based on their judgements, and thus, they can decide and choose their course of action promptly based on resident’s condition or side effects. Moreover, caring about involved participants being attentive to perceiving the residents’ needs when the residents could no longer articulate themselves. The participants expressed their worries about resident’s bodily deterioration, leading them to lose their ability to express needs, as shown by the following quote:

There is not much communication when residents go into their last stage of life. Well… some of them are consciously until their death, but most are sedated; therefore, it is necessary to use your knowledge and experience to assess not only their needs for food and liquids or bodily hygiene, but also, we have to monitor their response to pain killers and other medication, and if it’s too much or too little, we need to do what’s needed to reduce or increase the medication and not let them suffer (PI3).

Some of the participants expressed that attentiveness to the residents’ care needs was a skill based on their clinical gaze developed during their careers. Other participants discussed that building a close relationship with the residents while they still could walk and talk was a precondition that helped them develop a clinical gaze, hence facilitating the nurses’ being attentive. Attentiveness allowed the participants to do what was needed when knowing the residents’ needs during the provision of end-of-life care. This may be interpreted as the moral or ethical quality of caring about during the end-of-life caring process, as demonstrated by the following statement:

We have time to know the resident before their health condition worsens… We previously knew what they wanted and how they wanted… their stay at nursing home gives us the opportunity to know their preferences and needs. Morally, we are obliged to provide the same quality of care they received when they could express themselves (PI4).

Caring for—taking responsibility

According to several participants, another phase within the end-of-life caring process was taking responsibility to care for. The participants agreed that monitoring the residents in their last days implies assuming responsibility. Assuming responsibility was perceived as an autonomous caring activity. They also discussed taking this responsibility seriously, which is a moral dimension of the end-of-life caring process and, ultimately, of the nursing profession. Usually, this responsibility was taken by a nurse, but it also involved other healthcare personnel or even next-of-kin. Among these responsibilities, the participants mentioned that the end-of-life caring process included not only caring for the resident’s physiological and psychosocial needs, but also assigning permanent healthcare personnel to continuously monitor the resident. Although the participants were aware that they share responsibilities for the caring process, ‘who does what…’, they ultimately had the overall responsibility for the whole end-of-life caring process.

Another responsibility included communication, which included listening, providing information, and supporting the residents’ next-of-kin. One of the participants expressed this as follows:

When I observe that the resident’s health worsens, I inform the next-of-kin and invite the spouse or the children to a meeting together with the responsible doctor and I, and we inform the next-of-kin what they might expect. The end-of-life care is not only about the resident and their last days, but also is to care for their next-of-kin to meet their needs and to overcome guilt feelings, anger or sadness.… (PI1).

Another way to care for patients was to deliberately increase opportunities to exercise autonomy during the caring process. For instance, the focus group participants discussed issues around advanced life support during the resident’s last days of life. Being prepared and having knowledge were the preconditions that gave them the authority to identify and make decisions about residents’ needs in here-and-now moments, hence exercising their autonomy. Some participants shared their experiences with controversies between next-of-kins’ and nurses’ assessments of what is the best care for the residents during their last days of life. Therefore, the importance of taking the initiative to discuss and clarify the resident’s needs and preferences was emphasised during the focus group interview, as shown in the following quote:

Some next-of-kins express wishes for advance life support and hospitalisation for their loved ones… and sometimes, to meet their needs, we try this, but the resident is suffering. The resident comes back to us after one or two days… To avoid this, clear guidelines, and a dialogue between the resident, their next-of-kin and us at the very beginning [when the resident enters the nursing home] is important… I think that minimalising the occurrence of difficult or conflictual situations and relieving the sufferance is care for both resident and their next-of-kin (P8FG).

Care giving—knowing what, why, how and when

During the interviews, the participants also discussed the caregiving process and provided concrete examples of what their caregiving encompassed. Spending extra time with the resident, choosing to be in the room and holding their hand to maintain physical contact was perceived as an autonomous caring act and a deliberate choice. One participant described this as follows:

For me, it is important that the dying person feels or hears that I am here with him or her… how he or she feels in these moments matters to me. I do it because I want to do it.… (PI5).

Other participants said that being autonomous when they actually provided caregiving to residents helped them make continuous assessments based on knowledge about what , how , how much , when and why to care. Knowledge and skills were decisive factors in providing competent care and making autonomous decisions during the caregiving phase; hence, competence was perceived as a moral dimension of caregiving. One of the participants said the following:

Caregiving at end-of-life is not only about giving morphine according to the doctor’s prescription… it involves all the judgements you have to make, all the skills you have… from preventing the occurrence of bedsores to knowing when to stop feeding but preventing thirst… think about all this knowledge and experience you must have to be able to make autonomous bedside judgements about when , why and so on.… (PI2).

Care giving at the end-of-life was described as all the necessary activities a nurse does to provide comfort and compassionate care to a dying resident. Among these activities, providing fundamental care and keeping residents comfortable and free of pain were seen as parts of the caregiving process. Moreover, adequate pain relief and symptom management were described as the moral dimension of care giving at this stage of end-of-life care, as one of the participants from the focus group interview said:

You cannot be passive when you see that the resident is suffering. I cannot go home and think that I should have done one or the other. It is against the nurses’ code of ethics and my personal moral and ethical principles. You have to act… I have to do what is needed… first thing first… pain relief and then personal hygiene! (P9FG)

Some of the participants mentioned some challenges they encountered during the care giving process. They said that care giving implies also standing in demanding situations. The lack of healthcare personnel with necessary knowledge or formal palliative care education or handling ethical dilemmas was seen as demanding situations that influenced the provision of care giving. Most of the participants felt that they were alone during the decision-making processes, which increased their awareness of their professional autonomy:

Sometimes, during weekends or evenings, I am the only nurse among the healthcare staff, and I have an overall responsibility for all nursing home residents. I have to prioritise who gets my attention and who needs me the most. Things can happen, regardless of whether it is Friday evening or weekend. I have to make a decision and do what is needed: to be with the dying resident and to support his or her next-of-kin in that moment. (PI5)

Care receiving—assessing caregiving

Several participants stated that, during the care-giving process, it was important to assess how the resident receive the care provided at the end-of-life stage. This was possible by monitoring the resident’s state of being but to also assess the outcomes of their care giving activities. They also reflected on their assessments and how they subsequently dealt with those assessments.

All the participants were confident in their knowledge and with their care giving at the end-of-life stage. They were aware that their care activities had consequences for the residents’ physiological and psychosocial needs. The assessment of the resident’s state of being was made by nurses listening, observing and interpreting resident’s response to care giving as signs of comfort or discomfort. One of the participants explained this as follows:

When providing personal care, if the resident presents any signs that can be interpreted as discomfort, I think that priority number one is me not causing more pain or suffering. However, I also understand that this person needs more pain killers, so I have to make sure that this person receives adequate medicine. (PI5)

Some participants also discussed the importance of assessing their care giving activities. They mentioned the importance of their assessments of the benefits of all care giving against the burden of all interventions and treatments. Their professional autonomy allowed them to make decisions about how to eschew care giving that was inappropriately and burdensome and choose the best comforting care for the resident. The participants stated that knowledge and experience were important in making such decisions, and their professional autonomy facilitated making choices of the best and less burdensome care giving. One of the participants said the following:

We have to assess whether the care giving provided meets the resident’s needs or not, whether the care comforts or perceives it as a burden and how the resident responds to this provision of care. (PI4)

During the interviews, some of the participants revealed a feeling of guilt when assessing that care giving altered the resident’s state of being, thus leading to new needs for care. They also discussed that the moral obligation and intention to relieve the suffering of the resident should override the foreseen but unintended harmful effects of care giving, including medication or other care interventions. One of the participants shared her experience as follows:

I still remember the attitude some of us had for a while ago… too much or too often morphine depresses the respiration and leads to death… I was struggling with feelings of guilt and even moral distress when I observed residents were still suffering because the medication they received had little or maybe no effect. I called the doctor and explained the situation… usually, the experienced doctors listen to us… and he [the doctor] prescribed more morphine.… (PI3).

Documentation of the response to care giving was also an issue discussed during the interviews. Some participants emphasised the importance of keeping detailed reports for a proper assessment of the care giving and medication and its outcomes. All reports were digitally written. Informal discussions between nurses and next-of-kin were also documented, especially when next-of-kin evaluated the care their loved ones received. The participants indicated that the more written information there was, the better. One participant acknowledged the following:

There is no such thing as ‘too much information’… being open about the morphine’s side effects and what to expect in the next hours or days is important for them [next-of-kin]. It helps them understand that end-of-life care is a process, not a quick fix procedure. (PI5)

Caring with—It is a teamwork process

During the interviews, most of the participants reflected upon the end-of-life caring process and its occurrence within the context of care in nursing home. The participants discussed that end-of-life care is not only about the responsibilities nurses have towards residents and their next-of-kin, but also the responsibilities of others who may influence the caring process. They perceived the caring process as an interplay between residents, next-of-kin, and themselves, along with how they relate to each other, which influences the caring process. However, as several participants asserted, this process did not occur in a vacuum: it occurred within an organisational context, which then influenced the caring process from the very beginning. One participant emphasised the importance of stable healthcare personnel within a caring organisation:

High staff turnover does not facilitate good end-of-life caregiving. Both residents and their next-of-kin need continuity and predictability in caring for and among healthcare personnel. They need somebody they know and trust… being exposed to new people every day increases their stress levels. (PI1)

Other participants discussed the importance of the leadership style and how the leader’s support influenced the culture of end-of-life care at the ward. The participants revealed that, within a caring context where their natural potential was enhanced through an enabling leadership style, they felt that they could provide competent and compassionate end-of-life care. One of the participants from the focus group stated that a positive leadership style supports nurses’ professional autonomy, thus helping them control the caring process, to have independence and to increase their ability to make clinical decisions and competent judgements regarding resident’s end-of-life care. One participant shared her experience as follows:

My leader gives me the freedom to make decisions when it comes to deciding what is best for the resident… She [the leader] enables me to be autonomous during the caring process, and this makes me aware of what and how to care.… (PI2).

The participants from the focus group interview also discussed how the nursing home’s caring culture influences care practice. They perceived the nursing home’s caring culture as positive, enabling good end-of-life care but also defective and an obstacle to care. They emphasised the importance of providing dignifying end-of-life care for residents. During the focus group interview, two of the participants engaged in a dialogue:

End-of-life care is providing care to the most vulnerable people, and it should be dignified… To do so, I have to provide care in a ‘caring room’ filled with dignity. (P7FG) Although next-of-kin and I have different perspectives of what good end-of-life care might be, we care together, we are a caring team which ensures in our own way that the resident receives competent care.… Yes, you [P7] mentioned this ‘caring room’… maybe we should open the door more often into this room and invite next-of-kin. (P6FG)

The aim of the present study was to explore nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents. In the following, we discuss these perceptions in relation to Tronto’s [ 32 , 35 ] ethics of care framework and other supporting literature. To identify the moral dimension of these perceptions, we have related them to the moral qualities corresponding to each phase of the care process, as described by Tronto [ 33 , 35 ].

In the first phase of the care process—caring about—the participants discussed the importance of being attentive to which type of care needs to be provided, which is the moral quality of the first phase of care. Similar to findings from another study [ 49 ], findings from the present study revealed that some participants perceived autonomous practice as carrying out actions based on their decisions. Caring about entails detecting the resident’s needs, hence obliging nurses to ‘do something’ [ 50 ]. This particular skill was seen as an autonomous caring activity, that is, the nurses’ deliberate choice of putting on hold their self-interest and/or agenda and ‘a capacity genuinely to understand the perspective of the other in need’ [ 35 ] (p.34) , here nursing home resident.

In Tronto’s view [ 33 ], nurses’ attentiveness contributes to building up a caring relationship with a patient. The findings from the current study reveal that nurses perceived the provision of competent and compassionate end-of-life care as a result of their clinical gaze developed through certain activities, attitudes and knowledge of the patient, and through mutual relationships between the residents, next-of-kin and them. These results are supported by findings from previous studies that emphasise the importance of the nurse’s past experiences with the resident [ 51 ] and the significance of developing a good relationship with the resident and their next-of-kin [ 8 , 23 , 52 , 53 , 54 ] to provide adequate care. Moreover, similar to findings from other studies [ 55 , 56 ], the present study reveal that, to respond to the resident’s end-of-life care needs, nurses must bring not only their professional knowledge, clinical experience and ability to work autonomously but even ethical sensitivity. These findings enforce Gastman’s [ 50 ] view on caring, in which caring should respond to the patient’s care needs. This involves nurses having empathy, capacity of judgement and the ability to see what is required in a specific situation (here, end-of-life care), which, according to Gastmans [ 50 ], is inherent in the moral dimension of nursing practice.

The second phase of care—caring for—refers to nurses taking on the burden of meeting the needs identified in the first phase, that is, caring about. There was no ambiguity, and the participants had no doubts regarding who had the responsibility for the provision of end-of-life care to nursing home residents. The nurses’ responsibility was seen as a moral dimension of care. In line with Pursio et al.’s study [ 30 ], the present findings indicate that the freedom to make patient care decisions and work independently has a positive impact on the moral dimension of end-of-life care for nursing home residents. However, nurses’ work was not only about meeting residents’ needs, but also to create a safe milieu, a communicative space together with each other and with the resident’s next-of-kin, thus sharing power and control over the care process. Similar findings are displayed in an integrative literature review [ 53 ], demonstrating that a positive culture of collaborative and reciprocal relationships, a willingness to engage and become engaged and nurses communicating with intent to share and support rather than inform all lead to facilitating decision-making in nursing homes. According to Tronto [ 35 ], to facilitate end-of-life decision-making, nurses must take the initiative to allocate responsibilities; otherwise, the nurses withdraw themselves from their responsibility. By exercising their professional autonomy to assign responsibilities, nurses strive to mitigate the power imbalance among residents, their next-of-kin, and themselves, thereby preventing the occurrence of potential power struggles in their relationships [ 34 ]. This proactive approach helps prevent the emergence of end-of-life care dilemmas that could undermine the moral dimension of end-of-life care.

The third phase of care—care giving—requires, according to Tronto [ 35 ], the moral quality of nurses’ competence, meaning nurses directly engaging with care. The findings revealed that the nurses provided end-of-life care, and to do so, they needed to have competence, which implies the nurses having the knowledge, skills and values necessary to know what, why, how and when to provide end-of-life adequately. In addition, good end-of-life care requires the competence to individualise care—to provide competent care based on the resident’s physical, psychological, cultural and spiritual needs [ 57 ] while considering the resident’s context of care. Nurses’ competence is crucial for their autonomy; however, to effectively utilize their competence, nurses must be capable of assessing care needs and responding promptly [ 30 ]. Otherwise, delays in assessing residents’ care needs could undermine the moral dimension of end-of-life care. To provide individualised competent care, it is necessary that nurses make continuous assessments. As the findings reveal, the nurses were concerned with providing competent care, that is, adequate pain management. If the care provided was incompetent and led to more pain for the resident, the nurses perceived psychological distress—a state of being that resulted in response to a variety of moral events—leading to the nurses feeling anger, frustration, guilt, powerlessness and stress [ 58 ]. According to Tronto [ 34 ] (p.17) , ‘incompetent care is not only a technical problem, but a moral one’; however, as the findings reveal, the provision of competent care also depends on the nurses’ ability to prioritise decision-making when standing alone. Although nurses’ professional autonomy enabled them to make decisions and choose the right what , how , how much , when , and why , the lack of adequately educated healthcare personnel make the decision-making process a technical problem, which could weaken the moral dimension of end-of -life care.

The fourth phase—care receiving—involves the moral quality responsiveness. This means nurses being responsive to the reaction of the nursing home residents to end-of-life care process. As the findings have revealed, nursing home residents are vulnerable to nurses’ act of care or lack of care. According to Gastmans [ 59 ], care is a reciprocal practice that occurs within the framework of a relationship between the care provider (nurse) and care receiver (resident). The reciprocity consists of nurses assessing that the care provided actually meets the resident’s needs for pain management and other physiological and spiritual needs. The nurses had to make autonomous end-of-life care decisions to meet the resident’s needs. This involved the nurse’s attention to care giving to not be perceived as power abuse, which could have negative consequences for the moral dimension of end-of-life care provision.

According to Tronto [ 33 ], vulnerability may lead to unequal relationships where power abuse may occur. Nursing home residents are in a vulnerable position because they rely on nurses’ competence and ability to alleviate suffering and assess and reassess the residents’ responsiveness to pain management. To avoid an unequal relationship between resident and nurse, nurses must assess whether the care provided is competent or incompetent. Besides assessing and documenting the care provided and its outcomes, informal discussions between the resident’s next-of-kin and nurses were also assessed as important for next-of-kin perceiving a balanced power and equal position within the relationship. However, because each end-of-life act of care may alter the resident’s state of being, responsiveness requires more attentiveness [ 34 ]. Nurses must therefore meet the resident’s new needs for care with compassion and a commitment to maintaining the highest quality of life throughout the evolving stages of the resident’s end-of-life journey.

The final phase of care—caring with—requires that solidarity and trust are the foundation of all care giving to meet caring needs [ 35 ]. The moral quality of this caring phase is solidarity. The findings from the present study suggest that the nurses felt solidarity with both the residents and their leaders. The nurses felt that they were given the support and freedom to act autonomously when making decisions regarding end-of-life care, but similar to findings from a previous study [ 22 ], they also recognised the impact that organisational factors, such as leadership and care culture, may have on the justice and equality of the care provided when they prioritise care to whom needed it the most. Similar to findings from another study [ 49 ], participants in the present study described autonomy as the ability to make independent decisions and prioritise care for those who needed it most. However, according to Tronto [ 35 ], all nurses have a responsibility to help determine how care activities and responsibilities should be allocated. Residents, their next-of-kin and other healthcare personnel may have different views on how they may perceive appropriate, compassionate and dignified end-of-life care [ 20 , 21 ].Therefore, it is important to have transparency in nurse–resident–next-of-kin relations if the element of power within the relationship should be replaced by trust. Otherwise, the nurses’ autonomy may negatively influence the moral dimension of end-of-life care provided to nursing home residents. By opening the door of the “caring room” and inviting next-of-kin to participate in the care process, nurses may contribute to a greater reflectiveness around what may constitute ‘good’ end-of-life care.

Strengths and limitations

One of the strengths of the study is the use of Joan Tronto’s theory of the ethics of care [ 32 , 34 , 35 ] and its five phases and elements of care to discuss the study’s findings. This allows a deeper understanding of how nurses’ professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents. Another strength lies in the utilisation of two distinct methods of data collection: individual and focus group interviews. These approaches provided diverse datasets that shed light on various aspects of how nurses’ professional autonomy impacts the moral dimension of end-of-life care. Furthermore, the inclusion of participants with varying work experiences from four nursing homes enhances the richness and depth of the data generated from the interviews, further strengthening the quality of the study. Member checking ensures that the researcher’s interpretations accurately reflect the participants’ experiences and perspectives, thereby enhancing the validity of the study. This practice can be considered one of the methodological strengths of the study.

The current study has also some limitations that need to be considered. First, a limitation may be related to the size of the participant sample. The sample consisted of only nine nurses, a number that may be seen as a limitation in data collection. To challenge this limitation, the researchers posed follow-up questions during the interviews, thus offering the participants the opportunity to provide rich descriptions of their experiences with end-of-life care. Even though the sample consisted of only nine nurses, these participants reflected on and described their everyday work experiences. The participants’ rich descriptions were evaluated as possessing sufficient information power [ 41 ], thereby enhancing the overall quality of dialogues during interviews– a notable strength.

Second, the findings are limited to these nine participants and their personal work experiences in four different Norwegian nursing homes. This means that the sample is small and context dependent, which may limit the transferability and generalisability of the findings.

A third limitation pertains to the potential influence of the chosen theoretical framework on researchers’ preunderstanding during data analysis. To avoid bias, the theoretical framework was introduced at the end of the data analyses and after the coding process was conducted. The theoretical framework contributed to situating the knowledge from the empirical data into theoretical knowledge and vice versa. However, to be certain about interpretations and knowing that the qualitative nature of the study cannot completely exclude the impact of the preunderstanding on the analysis of the data, both researchers were aware of their theoretical preunderstanding and tried not to make conclusions beforehand.

The ethics of care framework provides opportunities for nurses to analyse their own caring activities during the provision of end-of-life care to nursing home residents. The exploration of the moral dimension of the provision of end-of-life care, utilising Tronto’s theory, revealed that moral qualities, such as attentiveness, responsibility, competence, responsiveness, and solidarity are influenced to a certain extent by nurses’ autonomy. What is crucial for the provision of competent end-of-life care is the nurses’ awareness of acting properly in accordance with the moral qualities to each of the phases of caring. Therefore, to provide competent end-of-life care nurses must be attentive to residents’ care needs, take on the responsibility for the care provided to ensure that residents’ needs are met, provide competent care based on knowledge, skills and values and assess how residents respond to the care provided. In other words, this is the basic nursing process in action, and this problem-solving approach is needed for the provision of competent end-of-life care.

Data availability

The data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request. Data are located in controlled access data storage at Oslo Metropolitan University.

Abbreviations

Participant in interview [number of the individual interview

Participant [number] in Focus Group interview

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Acknowledgements

We would like to express gratitude to the nurses who participated in this study, thereby contributing to the data collection. Additionally, we extend our thanks to the Oslo Metropolitan University Library for granting approval and for their support in covering the publication fee of this article.

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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Contributions

D.L. contributed to the study conception, data collection, and analysis, and wrote the main manuscript text. R.G. was involved in data collection, analysis, reflection, and manuscript writing. D.L. was responsible for administrative work related to journal submission and was also involved in reviewing and editing the manuscript. R.G. and D.L. have read and approved the manuscript before submission.

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Correspondence to Daniela Lillekroken .

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Gilbert, R., Lillekroken, D. Nurses’ perceptions of how their professional autonomy influences the moral dimension of end-of-life care to nursing home residents– a qualitative study. BMC Nurs 23 , 216 (2024). https://doi.org/10.1186/s12912-024-01865-5

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People-centred primary health care: a scoping review

• Resham B. Khatri 1 , 2 ,
• Eskinder Wolka 3 ,
• Frehiwot Nigatu 3 ,
• Anteneh Zewdie 3 ,
• Daniel Erku 4 , 5 ,
• Aklilu Endalamaw 1 , 6 &
• Yibeltal Assefa 1  

BMC Primary Care volume  24 , Article number:  236 ( 2023 ) Cite this article

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Integrated people-centred health services (IPCHS) are vital for ensuring comprehensive care towards achieving universal health coverage (UHC). The World Health Organisation (WHO) envisions IPCHS in delivery and access to health services. This scoping review aimed to synthesize available evidence on people-centred primary health care (PHC) and primary care.

We conducted a scoping review of published literature on people-centred PHC. We searched eight databases (PubMed, Scopus, Embase, CINAHL, Cochrane, PsycINFO, Web of Science, and Google Scholar) using search terms related to people-centred and integrated PHC/primary care services. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist to select studies. We analyzed data and generated themes using Gale's framework thematic analysis method. Themes were explained under five components of the WHO IPCHS framework.

A total of fifty-two studies were included in the review; most were from high-income countries (HICs), primarily focusing on patient-centred primary care. Themes under each component of the framework included: engaging and empowering people and communities (engagement of community, empowerment and empathy); strengthening governance and accountability (organizational leadership, and mutual accountability); reorienting the model of care (residential care, care for multimorbidity, participatory care); coordinating services within and across sectors (partnership with stakeholders and sectors, and coordination of care); creating an enabling environment and funding support (flexible management for change; and enabling environment).

Conclusions

Several people-centred PHC and primary care approaches are implemented in HICs but have little priority in low-income countries. Potential strategies for people-centred PHC could be engaging end users in delivering integrated care, ensuring accountability, and implementing a residential model of care in coordination with communities. Flexible management options could create an enabling environment for strengthening health systems to deliver people-centred PHC services.

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Introduction

The concept of “integrated and people-centred care” comprises two overarching concepts: integrated and people-centred care. The first concept, integrated care, is advanced from conventional illnesses-oriented and disease-focused health care. Illnesses-oriented care focuses on illness and cure, episodic consultation, and users as consumers purchase care. In contrast, disease-focused care refers to the management of diseases and priority disease control interventions, including their risk factors [ 1 ]. Additionally, integrated care means putting people and communities (not diseases), at the centre of health systems and empowering people and communities to take charge of their health by ensuring well-coordinated care around their needs, responding to fragmentations of care, and improving quality and cost-effectiveness rather than being passive recipients of services [ 1 , 2 ].

Furthermore, integrated care emphasizes holistic care to improve population health and wellbeing with continued care across the life course, around needs with shared responsibility and accountability [ 3 ]. Ensuring integrated care empowers people to tackle the determinants of ill-health through systems thinking and partnerships, encouraging them to become co-producers of care in multilevel (individual, organizational and policy) systems [ 3 ]. Thus, integrated care is best understood as a set of practices intricately shaped by contextual factors to improve health status, and reduce morbidities and mortalities [ 4 ].

Moreover, the second concept, i.e., people-centred care (PCC) is derived from patient and person-centred care. In the late 1960s, patient-centred care (different from illness-oriented care) was introduced and continued for several decades, opposing previously prevailing bio-medically oriented and paternalistic views of healthcare [ 5 ]. Patient-centred care aims to make a functional life, affirming the ethical principles of respect for persons and justice, striving to make the health system more responsive to the health services needs [ 5 , 6 ]. Advocates of market solutions to healthcare have been adopting patient-centred care by arguing for improved flexibility of consumer-oriented health care options and enhancing individual choice [ 7 ]. In contrast, person-centred care refers to caring for a meaningful life, and is a further development of patient-centred care based on personal philosophy, where the person denotes human and distinguishes from everything else [ 5 ]. Primarily, PCC is an expansion of patient-centred/person-centred care where people are involved in a care cycle, including the public, healthcare practitioners, and care organizations or systems. The PCC focuses on organizing principles for integrated care as a service innovation relating to individual service users, families and concerned communities [ 2 ]. Transforming the health care system towards people-centred health care requires action at four levels of the system: i) individuals, families and communities; ii) care providers; iii) health organizations; and iv) health systems [ 8 ]. The PCC is associated with better care continuity, considered care delivery by frontline workers within the health system, and responsive care practices and service utilization [ 9 , 10 ].

The World Health Organization’s (WHO) Framework on integrated people-centred health services (IPCHS) combines the concepts of integrated care and people-centred care [ 11 ]. The framework envisions that all people have equal access to quality health services, co-produces health care to meet their health needs across the life course and respect their preferences, and coordinated and quality care (comprehensive, safe, effective, timely, efficient, and acceptable) along the continuum by all skilled and motivated carers and work in a supportive environment [ 11 ]. The conceptualization of integrated PCC puts people’s needs first in designing and delivering health services with principles of quality, safety, longitudinality (duration and depth of contact), closeness to communities, and responsive care (equity in access, quality, responsiveness and participation, efficiency, and resilience) [ 12 ]. Specifically, the WHO framework on IPCHS outlines five interwoven strategies for management and health service delivery: engaging and empowering people and communities; strengthening governance and accountability; reorienting the model of care; coordinating services within and across sectors; and creating an enabling environment and funding support [ 13 , 14 ].

Primary health care (PHC) is a whole-of-society approach to organize and strengthen national health systems to bring health services closer to communities. The PHC approach comprises integrated health services to meet people’s health needs throughout their lives, addressing the broader determinants of health through multisectoral actions and empowering communities to improve health [ 15 ]. While primary care is a first level of care, it is usually delivered from prehospital, peripheral health facilities, and community settings [ 3 ]. People-centred PHC is the foundation of health systems that prioritize people first and have the potential to address diverse health needs by putting people and communities at the center of the system, empowering personalized health decision-making, and adapting health services to the local socio-cultural context [ 16 ]. Current body of literature focuses on people-centred integrated health services, especially medical care in hospitals, or family medicine or care by general practitioners. Nonetheless, there is a dearth of research that synthesize standalone studies on people-centred PHC and primary care using the WHO’s IPCHS framework. Thus, this study aimed to synthesize evidence on people-centred PHC interventions and strategies, their issues, and challenges. The findings of this review could inform strategies for strengthening the health system towards people-centredness in PHC systems and delivery and utilization of services.

This study is a scoping review of the literature reporting people-centred PHC services/ primary care. A scoping review method helps to synthesize and analyze existing literature on a topic and map the scope of available evidence. The process involves six steps: identifying the research question; identifying relevant studies, selecting studies; charting data; collating, summarizing, and reporting results; and consultation (optional) [ 17 , 18 ]. We employed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist to support comprehensive reporting of methods and findings (Supplementary Information, Table S 1 ) [ 19 , 20 ].

Identifying the research question

We identified the research question focusing on people-centred PHC/primary care services. The key research question was to review and synthesize the evidence on issues and challenges related to people-centredness in PHC/primary care services. We brainstormed on two concepts: people-centred care and PHC/primary care. These concepts guided identifying search terms under each concept and developing search strings. Our research team assumed that the proposed research question is broad to provide a breadth of issues to be explored in the review. The research question was further clarified by preliminary discussion among authors and agreed on the scope and significance of the topic.

Identifying relevant studies

We searched eight databases (PubMed, Scopus, Embase, CINAHL, Cochrane, PsycINFO, Web of Science, and Google Scholar). The search strategy was built on two key concepts and related search terms: People-centred care (patient centred care, people centred care, person centred care, patient-centred care, people-centred care, person-centred care, patient centered care, people centered care, person centered care, patient-centered care, people-centered care, client-centered care, client centered care, person-centered care); Primary Health Care (primary health care, public health care, community care, primary care, primary care nursing, family medicine, family practice, general practice) on each database. Boolean operators (AND/OR) and truncations (“”, *) varied depending on the database. The search included all studies published in English until 30 January 2023 (no starting date was applied in the search). No country-related limitations were applied.

Selection of studies

We included all studies that dealt with PCC regardless of their designs. Based on the title and abstract, screening was undertaken initially by the first author and further assessed by the second author. This was followed by a full-text screening initially by the first author and evaluated by the second and third authors. Any disagreements were resolved by discussion with the last author. We applied some post hoc inclusion and exclusion criteria based on the research question and new topic familiarity through reading the studies. For example, we included studies considering the population (health service users, care providers and managers), concept (PCC/integrated care), and contexts (PHC and primary care systems) of the study [ 21 ]. We included studies if their findings can answer our review question rather than the quality of individual studies. We followed the standard scoping review PRISMA-ScR checklist [ 19 , 22 ] and took reference to previous scoping reviews [ 23 , 24 ]. The included studies are based on the findings and their interpretation rather than the inclusion criteria [ 25 , 26 ].

Charting the data

A data-charting form was developed to extract data from each study covering author, year, country, type of study, key concepts, and main findings (Supplementary file, Table S 2 ). Data were extracted by the first and double-checked by the second and last authors.

Collating, summarizing, and reporting results

The first author did data analysis with guidance and support from the last author. Thematic analysis of data was conducted by adopting Gale’s framework method [ 27 ]. This analysis method adopts multiple steps such as collection of raw data (main findings about the research question for this review), familiarisation with data, paraphrasing of data/label according to the nature of data, developing/applying the analytical framework, charting data into the framework matrix, and finally interpretation. After reading and familiarisation the data, we extracted important concepts/categories and grouped them (with similar ideas) into the five components (engaging and empowering people and communities; strengthening governance and accountability; reorienting the model of care; coordinating services within and across sectors; creating an enabling environment and funding support) of the WHO ICPHS framework. Within each component, themes were generated by grouping similar categories/ideas and concepts. Findings were reported in three forms; first, outcomes of database search results were presented in the flow chart. Second, a customized summary of the data charting table (covering the author, location, and key ideas related to the research question) was presented. Finally, generated themes were explained and interpreted in the narrative paragraphs under each component of the analytical framework.

A search yielded 4494 records from all databases (Fig.  1 ). We removed 2090 duplicated records. Then, studies were screened for relevance based on title and abstract, whereby 2321 were excluded, leaving 83 studies for full-text screening. A further 31 studies were excluded after the full-text screening with reasons. A further 52 studies were included in the final review.

PRISMA-ScR flow chart showing the selection of studies for the review

Overview of included studies and generated themes

Table 1 presents an overview of studies included in the review, including countries where studies were undertaken, and each study mapped with generated themes. Of 52 studies, 39 were from high-income countries (HICs): 19 studies were from the USA, eight studies were from Canada (4) and the Netherlands (4), six studies were from the UK (3) and Australia (3), four studies were from Norway (2) and Sweden (2), and one each from Greece and Finland. Two studies were from upper-middle-income countries (UMICs), including one from multi-country (Latin America), Mexico, and South Africa. Three studies were from low-and lower-middle-income countries (LMICs), including one from Nigeria and two from Uganda, and seven studies were not specified. Of five strategic components of the ICPHS framework (Table 1 ), 26 studies described engaging and empowering people and communities (light black); 32 studies included strengthening governance and accountability (blue); 45 studies explained reorienting the model of care (pink); 34 studies incorporated coordinating services within and across sectors (yellow); and 33 studies discussed creating an enabling environment and support for funding (green).

Engaging and empowering people and communities

Empowering and engaging people provides the opportunity, skills and resources needed to be articulated and empowered end users of health services and advocates for a reformed health system [ 13 ]. Two themes are described in this component: community engagement in health care (11 studies) and empathic empowerment (17 studies) related to PHC/primary care services.

Community engagement

The use of the PCC practices facilitated an ongoing relationship between end users (providers and service users) through a team relationship, timely communication, and care plan (e.g., enhanced coordinated, comprehensive care) [ 29 , 33 ]. Additionally, peers promoted norms to other service users and worked together to improve routine care practices [ 31 , 34 ]. Reinforcement of people engagement and positive perception improved people-centred primary and hospital care [ 41 , 54 , 59 ]. Contextual factors influencing PCC included perceptions of involvement, engagement, and co-creation of processes to achieve physical and social well-being for persons with multimorbidity [ 50 , 51 , 71 ]. Nonetheless, only the positive perception of the public filled the limited expectations, and service users’ voices were less incorporated, which decreased the traditional system's authority [ 41 , 53 ].

Empowerment and empathy

Empathy, communication in multicultural languages, people’s involvement in making decisions and designing and implementing solutions effectively empower individualized care for their health [ 57 , 59 , 61 ]. Empathic support, communication with their doctors, understanding of problems, providers’ skills, and management plans were required for improved satisfaction and the effect of interpersonal care [ 61 , 62 , 70 ]. Communication between service users and providers enhanced high perceived empathy in consultation, trust in relationships, and positive experiences and satisfaction [ 50 , 62 ]. The trusted relationships with providers, their involvement in care treatment decision-making, and emotional support from family and friends found effective people-centredness in care delivery [ 45 , 67 , 68 , 77 ]. Local arrangements for service integration, multi-professional teams, and co-location also supported building relationships for community empowerment [ 75 , 79 ].

Nonetheless, weak communication between individuals and practitioners was reflected in daily care practice activities and had poor priority in service delivery [ 73 , 75 ]. Factors of poor empowerment in care continuity were lack of flexible design, high administrative tasks, limited appointment time, poor autonomy, and unavailability of providers [ 56 , 64 ]. Several factors, such as intra- and interpersonal (e.g., perceived reluctance to engage in care), and organizational (e.g., limited encounter time, lack of discussion, psychological issues with health workers), also influenced understating the problems and health service needs [ 60 , 62 , 78 ].

Strengthening governance and accountability

Strengthening governance requires a participatory approach to policy formulation, decision-making and performance evaluation at multilevel health systems, from policy-making to the service delivery level [ 13 ].Two themes under this component were: organizational leadership (18 studies) and mutual accountability (15 studies).

Organizational leadership

Strategies to strengthen organisational leadership, human capital, and facilitating adaptive culture and innovation contributed to innovative PCC primary care services [ 32 ]. For instance, the people-centred medical home (PCMH) model created an enabling environment for delivering quality care, reduced care costs, and organizational needs, and incorporated people’s voices into governance and accountability for operations [ 36 , 53 , 59 , 63 ]. The role of professional councils (e.g., nursing, or general practitioners’ organizations) could be instituted to measure people-centredness for the implementation of PHC [ 58 , 76 ]. Similarly, increased local leadership, team communication, and high physician engagement with service users facilitated the successful implementation of people-centredness in PHC [ 37 , 46 ]. Multiple stakeholders offered an opportunity for reform and gaining an inclusive vision of PCC in Uganda [ 57 ] and Greece [ 52 ]. Furthermore, the use of digital technology supported the functionality of clinical information aligning with organizational support, availability of community resources, clinician interactions, and gap payment funding models to incentivize care workers [ 42 , 63 , 67 ].

However, the people-centred integrated care process failed to identify long-term goals, provide shared long-term care, and monitor and evaluate health care delivery for people with multimorbidity [ 47 ]. Furthermore, organizational and policy impediments (e.g., state decisional capacity laws and financial crisis), lack of documentation or low priority also impacted the delivery of integrated PCC [ 35 , 39 , 52 , 78 ].

Mutual accountability

Understanding the health system and integrating different dimensions of care ensured the changing needs of people with complex chronic illnesses [ 49 , 54 ]. Integrated responsiveness and relative priority for the cultural change improved client and professional interaction towards organized care [ 54 , 59 , 63 , 69 ]. The government policy in health system organizations assessed incentives for care coordination to meet complex needs [ 36 , 41 , 78 ]. Innovations and people-centeredness shaped the access to health facilities, costs, users’ perceived quality of care and expectations, and availability of free services [ 53 , 62 ]. Furthermore, approaching interpersonal and coordinated multidisciplinary teamwork, consultation on preventive and promotive measures supported people receiving treatment, medical information, and skill mix care practice towards people-centred holistic care [ 60 , 66 , 71 , 74 ].

Nonetheless, fragmentation, segmentation, limited funding, insufficient coverage, poor quality, ageing and chronic conditions, and lack of effectiveness and sustainability were multilevel challenges to achieving mutual accountability towards PCC [ 68 , 72 ]. Other influencing factors of mutual accountability were limited understanding of professional identities, roles, and responsibilities in continuity of care and service integration [ 75 ].

Reorienting the model of care

Reorienting the model of care means ensuring that efficient and effective health care services are designed, purchased and provided through innovative models of care that prioritize primary and community care services and the co-production of health [ 13 ]. Three themes generated in this component were: residential and home-based care (11 studies), care for people living with multiple chronic conditions or multimorbid conditions (21 studies), and participatory care (30 studies).

Residential and home-based care

The residential model of care, known as the patient-centred Medical Home (PCMH), is a new form of transformation in healthcare that offers an interprofessional model by connecting services and management in a primary care setting [ 28 , 36 , 61 , 79 ]. The centrepiece of transformation for primary care in a residential health care model restored confidence in quality of care and resulted in reduced care costs of hospital-related outcomes [ 36 , 63 ]. Such a model that was developed in iterative phases (e.g., planning, acting, observing, supporting and transforming care practices) met the needs of people’s priorities, improved holistic and more people-centred care in primary care, and addressed the health needs of disadvantaged communities [ 29 , 38 , 53 , 74 ]. The residency-affiliated community group family medicine provided goal-directed care for people with complex health problems (functioning, social situation, support and empowerment, and care satisfaction). It ensured self-management at home (e.g., engaging with nurses, telehealth, medication plans, and interactions) [ 29 , 35 , 74 , 78 ]. Positive effects of functional residential care improved satisfaction, informal and formal caregivers in clinical screening as high-risk groups, and delayed placement [ 63 , 79 ]. However, home-based residential care was unsuitable for managing several disease-based care pathways and specialist care to address individuals' needs for people with substantial comorbidity [ 35 ].

Care for people with comorbidities

PCC brought the management of chronic diseases to a new dimension of care (legitimizing the illness experience, acknowledging service users’ expertise, offering hope and providing advocacy) [ 30 ]. People with multimorbidity viewed PCC as a well-coordinated, respectful, supportive care long-term management of medical problems and prevention and promotion through behaviour change interventions [ 36 , 60 , 62 ]. Approaches of PCC in the management of comorbidities were effective communication, information, knowledge sharing, understanding demonstration of provider’s multidimensional skills, and agreement about treatment plans [ 39 , 57 , 69 ]. Additionally, care from non-physicians found important in comorbidities; for instance, pharmacists provided direct care services, ensured access to community resources, assisted care transitions, and provided interprofessional education [ 28 ]. Diabetes specialist nurses expressed needs that diverge and converge for people with diabetes [ 56 ]. Developing training for health care providers for self-management interventions and self-care practices positively impacted people with chronic diseases [ 42 , 48 ]. Such care practices brought the benefit of clinical care, active involvement in care, and shifting from disease-focused to people-centred PHC [ 34 , 35 , 49 , 74 ]. Furthermore, the Family Health Team and multidisciplinary providers pursued continuity and care coordination, allowing site-specific program implementation and commitment to timely delivery of health services [ 37 , 40 ]. Interdisciplinary teams and informal caregivers enabled people-centred medication therapy for older people, management services with continuous quality improvement initiatives, and inpatient family medicine service [ 28 , 63 , 78 ]. Nevertheless, understanding variations between GP practices and poor documentation of records of people-centeredness had challenges in applying evidence-based medicine [ 39 , 43 ]. Additionally, some of the populations (e.g., migrants and refugees) were neglected in the management of chronic disease, had gaps in irregular care and providers, lack of information (medical history to solve health problems), and limited time spent with the people [ 41 , 52 , 78 ].

Participatory model of care

Designing participatory and holistic or whole-person care (e.g., respect and value, choice, dignity, self-determination, purposeful living), and had the potential to address multiple dimensions of care for wellbeing (e.g., physical, mental, and social needs) by knowing and confirming tailored health plan, inter-professional teamwork, and care provision in collaboration with families [ 31 , 44 , 51 , 52 , 64 , 66 , 74 , 77 ]. Understanding the participatory approach of PCC informed quality of care (e.g., availability of medication, shorter waiting times, flexible facility opening hours, courteous health workers) for care for ageing problems [ 62 , 65 , 70 ]. The care process for people with social and health complexity (for health needs of older adults, and referral practice) was found effective in primary care to adapt peoples’ preferences [ 54 , 70 ]. There was effective communication by using electronic health records to people with complex health issues that supported the involvement of people and families in health care (e.g., practice set-up, planning, and change in consultation) [ 39 , 45 , 49 , 57 , 69 , 72 ]. Participation of people built trust through shifting the role of self-care based on medical knowledge and pragmatic experience of engagement in care process, and ensuring provider relationship and guidance [ 33 , 34 ]. Participation of service users (e.g., obtaining feedback, engaging stakeholders, adapting PCC quality improvement for better quality care) improved service integration and practices [ 42 , 75 , 77 ].

Participatory and coordinated care enhanced joint working, fostering communication and professional cultures (shared beliefs and values) by exploring and prioritizing the problems (e.g., knowing the person, identifying problems, prioritizing care, treatment, evaluating decisions and implementation) [ 72 , 73 , 75 ]. Approaches to co-design and co-creation built trust, partnering with professionals and users, communities, and individuals experience [ 51 , 66 , 74 , 77 ]. Strategies of participatory care included evidence-based decision practice, enhancing interdisciplinary team approach to continuity of care, developing training for providers, involvement of people in sharing experience (e.g., empathy in consultation, physical and social wellbeing), and providers' attitudes (open communication, caring behaviours) [ 48 , 50 , 51 , 54 , 58 ]. Furthermore, system responsiveness for quality care (e.g., affordable, coordinated, accessible) moved towards the long-term goal of universal access [ 38 , 47 , 72 ]. However, challenges such as the unavailability of family physicians, limited information and communication technology, and heterogeneity of people-centred quality improvement influenced the integrated people-centred primary care among disadvantaged populations (e.g., refugees) [ 52 , 55 ]. In some public facilities, the care process was unseen and disrespected, lacking continuity, transition, and coordinated care [ 61 , 68 ].

Coordinating services within and across sectors

Coordination requires integrating care providers within and across health care settings, developing referral systems and networks among levels of care, and creating linkages between health and other sectors [ 13 ]. Two themes were described under this component: partnership with stakeholders and sectors (24 studies) and coordination for quality care (14 studies).

Partnership with stakeholders and sectors

Partnership with other sectors supports engagement in people-centred PHC. Involvement of stakeholders and sectors (e.g., trust, understanding of purpose, clarity of expectations, and power-sharing) facilitated priorities for care evaluation and treatment outcomes [ 71 , 74 , 76 ]. Developing partnerships and team-based approaches (appointment tool guide communication) with people experiencing complex diseases to reduce stigma, social and relational integration for care coordination, and self-management [ 35 , 36 , 64 , 77 , 79 ].

Communication technology support partnership with other sectors. Communication technology and resources support non-physician healthcare providers [ 38 , 78 ]. Integrated health information technology was perceived as effective in the organization and management of chronic diseases, including the medical and care needs (discharge-related information sent from the hospital and care providers linking the care process) [ 32 , 39 , 40 , 48 ]. Electronic resources supplemented clinic visits through direct communication with people and providers [ 64 ]. Information technology supported the development of ongoing partnerships in innovation and integrating medical and social care to manage chronic illnesses, research, and practice [ 30 , 31 , 32 , 44 , 52 , 78 ].The development integration of technology (e.g., mhealth tools and high-tech and high-touch technology) supported in identifying and engaging high-risk populations [ 53 , 64 , 77 ].

More attention toward changing the organization of the electronic health records system streamlined documentation work of care visits/encounters [ 45 , 56 ]. Improved application, user-focused optimization efforts and tool functionality enabled to address the issues of access, health service and health literacy [ 46 , 59 ]. At the same time, clinicians adopted information technology with the perceived value of data sources enhanced the development of interventions for people living with multimorbidity [ 31 , 48 , 59 ]. Updated electronic health records data analytics incorporated organization-wide procedures (staff, time management, cultivating staff collaborations) and follow-up services in PHC settings [ 39 , 46 , 56 ]. However, coordination and partnership with stakeholders had challenges in healthcare organizations, including work practice discrepancies and lack of enforcement agencies [ 36 , 56 , 76 ]. Additionally, the potential of information challenges influencing PCC was the lack of data protection laws (including documentation and dissemination, time pressure, and conflicting financial incentives) that impeded the use of digital records in care [ 68 ].

Coordination and communication

Prerequisites in co-creating optimal health care practice with and for older people and their expectations influenced the implementation of biomedical and public health interventions and quality of care [ 62 , 66 ]. Coordinated care supports user-driven healthcare decision-making for quality improvement (reducing cost, relationship with providers), a perceived measure of quality care [ 64 , 67 ], common perception, and sustainable primary care models to ensure quality care for physical and emotional health [ 50 , 67 ]. Engaged physician-service users communication found that professionals care (dignity, respect, prioritize, and individualized care) for people with multiple health needs [ 60 , 78 ]. Furthermore, the coordinated care of frontline staff in communicating with other stakeholders can address social and economic issues to implement quality integrated care [ 53 , 63 ], instead of describing the holistic/whole person and PCC approach. GPs’ narrow disease-specific focus of guidelines was inappropriate for addressing people’s needs and health priorities[ 43 ]. Challenges in designing and implementing PCC interventions that hindered the delivery of integrated care were lack of clarity around responsiveness and readiness, lack of information and coordination of care, lack of integrating electronic health records in work practice (preferences, information, and education) [ 41 , 45 , 57 , 68 , 69 ].

Creating an enabling environment

To implement strategies of four categories, it is necessary to create an enabling environment that brings together all stakeholders to undertake transformational change [ 13 ]. Two themes under this component were: flexible management options (17 studies) and enabling environment (17 studies).

Flexible management for care

The flexibility of management can create an enabling environment for PCC. Practice stakeholders address the local needs expectations by redesigning health and social, professional cultures and flexible program implementation [ 37 , 75 ]. Care transitioned from hospital to home toward high-quality care that reduced unnecessary walk-in clinics and emergency department coordinating relationship building (with end users or organizations) and enhanced pharmacy services [ 28 , 36 , 40 , 42 ]. Organizational perspectives (cost-effectiveness and health care delivery processes) improved long-term goal-driven people-centred integrated care and increased people and providers relationships (including knowledge, and satisfaction) [ 32 , 33 , 34 , 47 ]. The PCMH model operationalized health services by providing a feasible reform option and solutions to people's engagement [ 28 , 36 , 44 , 46 ]. However, flexible management and implementation were influenced by challenges (lack of resources and training, excessive caseloads, poor data management responsibilities, lack of medical neighbourhood) and inconsistent implementation of practices [ 36 , 37 , 42 , 46 , 75 ]. Also, difficult communication and being invisible in the context of event-based quality of care frameworks were identified as gaps in primary care clinics [ 41 , 47 ].

Enabling the health system environment

Health workforce attributes (including the responsibility of professionals) enabled sensitizing systems (continuous supervision, professional training, empowerment for leadership) focused quality of care improvement initiatives to bring improved clinical practice [ 69 , 71 , 72 ]. Collaborative works (between a personal network of family and practitioners), upgrading of providers for quality improvement resources, alignment measurement efforts, engaging champions, and need assessment (needs/priorities for people-centred measurement) facilitated identification and management of symptoms [ 72 , 73 , 76 , 77 ]. Similarly, co-location of community health systems, organizations, and service delivery outlets found committed care boundaries that provided sufficient care responsive to their wishes and needs [ 54 , 57 , 75 ]. Mobile health tools are supported ensuring flexible management through sensitization and optimizing the environment across multiple dimensions (individual, provider, and organizational levels) [ 54 , 65 ]. Additionally, understanding common ground, exploring health and illness, valued customers, people-centredness, social and physical wellbeing and satisfaction, whole- PCC reported measures to improve health status and reduce morbidities and mortalities [ 51 , 53 , 58 , 62 ]. Nonetheless, difficulties achieving mutual understanding between end users were influenced by several challenges such as lack of training and new skills of providers, lack of trust (genuine care, respect, dignity, autonomy), poor disclosure of problems (time-compressed visit) and lack of resources [ 60 , 68 , 79 ].

This review synthesizes evidence on people-centred PHC and primary care. Major themes identified from this review were community engagement, empowerment and empathy, leadership and mutual accountability within the organization, home and community-based and participatory care, holistic care for people with multimorbidity, partnership with information technology, coordination and communication, and flexible management for delivery of people-centred PHC services. Most studies in the HICs explained people-centred medical care models with little focus research in LMICs.

There are several ways that health systems could generate and deliver people-centred and integrated care for individuals, families, and communities. Firstly, promoting respectful conversations and activities between care providers and service users is fundamental for improving community empowerment and ensuring providers’ empathy. People engagement and empowerment enhanced people-centred PHC in many contexts. Empowering traditionally disengaged communities and individuals requires awareness of social determinants of health [ 80 ]. Conversation and engagement of people can support personalized, coordinated care towards narrowing inequalities [ 81 ]. The provider’s empathy also enabled supportive, involved care, community, social enterprise, and volunteerism [ 81 ]. Inter-professional teamwork and collaboration with and for older people and relatives are fundamental to empathy and empowerment [ 66 ]. Of the five strategies of the WHO framework on IPCHS, community engagement and empowerment have little attention in the literature. The current global health initiatives, including the Asthana Declaration, have envisioned empowerment, health literacy, and understanding the public’s role in PHC [ 82 ]; community engagement could potentially promote people-centred PHC service delivery. Thus, the focus of research, policy and practices of community engagement and empathy need to be prioritized in PHC and primary care in low-income settings.

Secondly, for PCC and coordinated care, there was an emphasis on organizational integrity and mutual accountability. Strengthening leadership and accountability in home-based care increased people-centred care in PHC services [ 83 ]. Co-creation and healthcare organizations and their leadership efficiently could meet the health needs of people according to standards of care to align tactics and improve organizational reliability while paying attention to quality care [ 84 ]. Organizational leadership and mutual accountability strategies could be beneficial in recruiting people with integrity and sensitivity, the ability to notice and respond through policies of diverse staff and aligning incentives and recognitions [ 11 , 84 ].

Thirdly, some models of care, such as care for people with multiple chronic conditions or comorbidities, residential home-based care, and participatory care, were effective approaches for PCC in PHC and primary care contexts. Such care models can effectively reduce the burden of hospitalization and care costs by using PHC and primary care in prehospital settings [ 83 , 85 ]. The residential home-based model of care facilitates holistic care through collaboration between family members and providers considering the family contexts and comprehensive education and care [ 86 ]. Such a model is useful for people with multiple chronic conditions that could support the activities of daily living and produce high healthcare expenses. Functional limitations can often complicate access to health care, interfere with self‐management, and necessitate reliance on caregivers [ 87 ]. Crucial for implementing people-centred care is knowing and confirming people as a whole and co-creating a tailored personal health plan [ 66 ]. These residential care models could enhance the identification of health priorities (i.e., specific health outcomes and healthcare preferences), and clinicians align their decision-making to achieve these health priorities [ 88 ].

Fourthly, partnership with the digital and information technology sector, and tools can potentially ensure coordinated care by monitoring health records, coordinating processes, tracking health services, and involving people representatives and individuals in developing digital services and work practices. The information technology-related stakeholders are vital for mutual information sharing and distributing initiatives, tasks, and responsibilities from providers to service users [ 89 ]. The human-centred service design approach can leverage the potential of technology and advance healthcare systems, and innovative solutions for healthcare change and wellbeing; addressing the complexity of healthcare systems toward integrated care [ 90 ].

Finally, enabling and flexibly managing the health system environment is fundamental for people-centredness in the provision of delivery of PHC services. System strengthening and management requires system inputs and processes towards desired outcomes. The structural factors of organizations and systems (e.g., creating a PCC culture across the continuum of care, co‐designing educational programs, health promotion and prevention programs with people) provide the foundation for PCC, providing a supportive and accommodating environment developing structures to support health information technology and measure and monitor people-centred care performance influence the processes and outcomes [ 91 ]. The processes component describes the importance of cultivating communication and respectful and compassionate care, engaging service users in managing care and integrating care. At the same time, outcome domains identified include access to care and client-reported outcomes [ 91 ]. At the system level, the enabling environment indicates the adaptation of responses, involvement in support, engagement with professionals, use of information and communication technologies, and organization of care [ 92 ].

This study has some limitations. We included studies written only in English. This study is a scoping review of qualitative evidence in the topic. We synthesized evidence rather than grading the quality of available evidence. Synthesized evidence from this study could provide research, policy, and program insights for improved people-centred PHC services. Evidence generated from this study is primarily based on studies from HICs and upper-middle-income countries (UMICs), which can have limited contextual implications in low-income countries as the health systems contexts of LMICs are different. Therefore, future research can be conducted on specific components of people-centred care in low-income country settings.

Implementing several approaches of people-centred PHC and primary care, especially in HICs, has little priority in LMICs. Potential strategies for PCC could include engaging end users in the care process, community engagement and empowerment, mutual accountability, and institutional leadership. Some successful models of care, such as home-based residential care, are effective in care for people living with multimorbidity, and valuable in prehospital care that can reduce the care costs and burden to the health system. Flexible management options could create an enabling environment for health system strengthening in providing and delivering health services.

Availability of data and materials

All data generated or analyzed during this study are included in this published article [and its supplementary information files].

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Additional file 1: table s1..

Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist. Table S2. A summary of studies included in the review.

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Khatri, R.B., Wolka, E., Nigatu, F. et al. People-centred primary health care: a scoping review. BMC Prim. Care 24 , 236 (2023). https://doi.org/10.1186/s12875-023-02194-3

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• Eidah Ayed Saeed Alqahtani
• Samhah Sedian Ali Alajmii
• Samraa Saeed Ali Al Asmari
• Mariam Mohd Ayeid Alamri
• Noora Mohammed Said Alfaran
• Thamra Mohammed Said Alfaran

The aim of this paper was to review the literature on factors related to role stress in nurses, and present strategies for addressing this issue based on the findings of this review while considering potential areas for development and research. Computerized databases were searched as well as hand searching of articles in order to conduct this review. This review identified multiple factors related to the experience of role stress in nurses. Role stress, in particular, work overload, has been reported as one of the main reasons for nurses leaving the workforce. This paper concludes that it is a priority to find new and innovative ways of supporting nurses in their experience of role stress. Some examples discussed in this article include use of stress education and management strategies; team-building strategies; balancing priorities; enhancing social and peer support; flexibility in work hours; protocols to deal with violence; and retention and attraction of nursing staff strategies. These strategies need to be empirically evaluated for their efficacy in reducing role stress.

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Old publisher:  Transnational Press London

New Publisher:  Migration Letters & The London Publishers