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Using Qualitative Evidence in Decision Making for Health and Social Interventions: An Approach to Assess Confidence in Findings from Qualitative Evidence Syntheses (GRADE-CERQual)

* E-mail: [email protected]

Affiliations Global Health Unit, Norwegian Knowledge Centre for the Health Services, Oslo, Norway, Health Systems Research Unit, South African Medical Research Council, Cape Town, South Africa

Affiliation Global Health Unit, Norwegian Knowledge Centre for the Health Services, Oslo, Norway

Affiliation Social Welfare Unit, Norwegian Knowledge Centre for the Health Services, Oslo, Norway

Affiliation Uni Research Rokkan Centre, Bergen, Norway

Affiliation Division of Social and Behavioural Sciences, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa

Affiliation UNDP/UNFPA/ UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction, Department of Reproductive Health and Research, WHO, Geneva, Switzerland

Affiliation School of Social Sciences, Bangor University, Bangor, United Kingdom

Affiliation School of Health & Related Research (ScHARR), University of Sheffield, Sheffield, United Kingdom

Affiliation European Centre for Environment and Human Health, University of Exeter Medical School, Exeter, United Kingdom

Affiliations Department of Health Management and Economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran, Department of Information, Evidence and Research, Eastern Mediterranean Region, World Health Organization, Cairo, Egypt

• Simon Lewin, 
• Claire Glenton, 
• Heather Munthe-Kaas, 
• Benedicte Carlsen, 
• Christopher J. Colvin, 
• Metin Gülmezoglu, 
• Jane Noyes, 
• Andrew Booth, 
• Ruth Garside, 
• Arash Rashidian

Published: October 27, 2015

• https://doi.org/10.1371/journal.pmed.1001895
• Reader Comments

10 Jun 2016: The PLOS Medicine Staff (2016) Correction: Using Qualitative Evidence in Decision Making for Health and Social Interventions: An Approach to Assess Confidence in Findings from Qualitative Evidence Syntheses (GRADE-CERQual). PLOS Medicine 13(6): e1002065. https://doi.org/10.1371/journal.pmed.1002065 View correction

Citation: Lewin S, Glenton C, Munthe-Kaas H, Carlsen B, Colvin CJ, Gülmezoglu M, et al. (2015) Using Qualitative Evidence in Decision Making for Health and Social Interventions: An Approach to Assess Confidence in Findings from Qualitative Evidence Syntheses (GRADE-CERQual). PLoS Med 12(10): e1001895. https://doi.org/10.1371/journal.pmed.1001895

Copyright: © 2015 Lewin 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

Funding: This work was supported by funding from the Department of Reproductive Health and Research, WHO ( www.who.int/reproductivehealth/about_us/en/ ) and Norad (Norwegian Agency for Development Cooperation: www.norad.no ) to the Norwegian Knowledge Centre for the Health Services. Additional funding for several of the pilot reviews was provided by the Alliance for Health Policy and Systems Research ( www.who.int/alliance-hpsr/en/ ). We also received funding for elements of this work through the Cochrane supported "Methodological Investigation of Cochrane reviews of Complex Interventions" (MICCI) project ( www.cochrane.org ). SL is supported by funding from the South African Medical Research Council ( www.mrc.ac.za ). The funders had no role in study design, data collection and analysis, preparation of the manuscript or the decision to publish.

Competing interests: JN declared receiving a small grant from the Cochrane Collaboration to undertake a component of this this work and received travel expenses to attend meetings from the WHO Alliance for Health Policy and Systems Research and the Norwegian Knowledge Centre for the Health Services. All other authors have declared that no competing interests exist.

Abbreviations: CERQual, Confidence in the Evidence from Reviews of Qualitative research; GRADE, Grading of Recommendations Assessment, Development, and Evaluation; WHO, World Health Organization

Provenance: Not commissioned; externally peer reviewed

Summary Points

• Qualitative evidence syntheses are increasingly used, but methods to assess how much confidence to place in synthesis findings are poorly developed.
• The Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach helps assess how much confidence to place in findings from a qualitative evidence synthesis.
• CERQual’s assessment of confidence for individual review findings from qualitative evidence syntheses is based on four components: the methodological limitations of the qualitative studies contributing to a review finding, the relevance to the review question of the studies contributing to a review finding, the coherence of the review finding, and the adequacy of data supporting a review finding.
• CERQual provides a transparent method for assessing confidence in qualitative evidence syntheses findings. Like the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach for evidence of effectiveness, CERQual may facilitate the use of qualitative evidence to inform decisions and shape policies.
• The CERQual approach is being developed by a subgroup of the GRADE Working Group.

Introduction

The systematic use of research evidence to inform health and social policies is becoming more common among governments, international organisations, and other health institutions, and systematic reviews of intervention effectiveness are now used frequently to inform policy decisions. However, evidence of effectiveness is not sufficient to inform decisions on health and social interventions. Decision makers also need information on the feasibility and acceptability of interventions, so as to better understand factors that may influence their implementation [ 1 , 2 ]. Evidence informing the implementation of an intervention within a health or social care system may be obtained from a range of research, including qualitative research. Furthermore, there has been a rapid increase in the number of syntheses of qualitative research being undertaken and in the development of new methods in this area [ 3 – 5 ].

Most systematic reviewers of qualitative research evidence agree that there is a need to distinguish good quality primary studies from those of poor quality and, further, that structured approaches are needed to enhance the consistency and transparency of any approach taken [ 6 ]. While this may give an indication of the trustworthiness of individual studies, and of the review’s evidence base as a whole, it does not inform the decision maker about individual findings within a review, which will be produced through the synthesis of different combinations of findings from studies in the review. Typically, policy makers and other end users use these individual findings ( Box 1 ) to inform decisions about health or social care interventions. We therefore need an approach for assessing how much confidence to place in specific review findings to help users judge how much emphasis they should give to these findings in their decisions.

Box 1. What Is a Review Finding?

The CERQual approach is applied to individual review findings from a qualitative evidence synthesis. Critical to the application and development of CERQual is, therefore, an understanding of what a review finding is. While it may be obvious in some syntheses, for others it will be unclear to which findings (or at which level of synthesis) the CERQual approach should be applied.

For the purposes of CERQual, we define a review finding as an analytic output from a qualitative evidence synthesis that, based on data from primary studies, describes a phenomenon or an aspect of a phenomenon.

By “phenomenon,” we mean the issue that is the focus of the qualitative inquiry. The phenomenon of interest may be a health or social intervention or issue ( S1 Table ).

How review findings are defined and presented depends on many factors, including the review question, the synthesis methods used, the intended purpose or audience of the synthesis, and the richness of the data available. The large number of approaches to qualitative synthesis range, in terms of purpose, from those that aim to identify and describe major themes to those that seek more generalizable, interpretive explanations that can be used for theory building [ 7 ]. Furthermore, many syntheses use both of these approaches or include findings that cannot clearly be defined as either descriptive or interpretive.

An example of a qualitative evidence synthesis that presents different levels of findings is that by Thomas and colleagues on barriers to healthy eating among children. At a more descriptive level, the review includes the finding that children’s food choices are constrained by the availability of food for school dinners and by pressures to choose and eat food quickly. At a more interpretive level, the review attempts to build theory around children’s eating habits. The review authors discuss the finding that children did not see it as their role to be interested in health, preferring to prioritize taste, and that buying healthy food was not a legitimate use of their own pocket money [ 8 ]. Similarly, a recent synthesis on factors affecting the implementation of lay health worker programmes presented a range of more descriptive findings tied to programme acceptability among different stakeholders, lay health worker motivation, and health systems constraints. The review authors organised these findings in a logic model in which they proposed different chains of events in which specific lay health worker programme components led to particular intermediate or long-term outcomes, and in which specific moderators positively or negatively affected this process [ 9 ].

To date, CERQual has been applied to more descriptive-level review findings in syntheses that have been commissioned and used for guideline development for health systems. Given the range of synthesis methods available and the many options for presenting review findings, review authors will need to judge on a case-by-case basis when it is appropriate to apply the CERQual approach. As experience in applying the approach is gained, guidance will be developed on the range of review findings to which CERQual can be applied.

For findings from systematic reviews of the effectiveness of interventions, the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach is now in common use. GRADE allows a consistent and transparent assessment of confidence in evidence of effectiveness for each outcome considered in a systematic review. Key elements in a GRADE assessment, applied to each review outcome, include the risk of bias in the included studies, the relevance or directness of these studies to the review question, the consistency of results from these studies, the precision of the estimate, and the risk of publication bias in the contributing evidence. Such assessments of findings from reviews of effectiveness are a critical component of developing recommendations on health care interventions [ 10 ].

Guideline development groups, and other users of evidence from systematic reviews, are often familiar with the GRADE approach for assessing how much certainty to place in findings from reviews of the effectiveness of interventions. However, GRADE is not appropriate for qualitative evidence. As the demand for syntheses of qualitative evidence increases, so does the need to be able to assess how much confidence to place in findings from these syntheses [ 1 ]. At present, there is no established approach for indicating how confident we can be in the findings from qualitative evidence syntheses, although one previous study attempted to adapt the GRADE approach to qualitative review findings in a mixed-methods synthesis [ 11 ], while another study described a tool developed specifically to assess confidence in findings for meta-aggregative qualitative evidence syntheses [ 12 ]. The lack of an established approach is an important constraint to incorporating qualitative evidence on the acceptability and feasibility of health interventions into tools to support decision making, including the GRADE Evidence to Decision frameworks [ 13 ]. This paper describes a new approach for assessing how much confidence to place in findings from qualitative evidence syntheses.

Development of the Confidence in the Evidence from Reviews of Qualitative research (CERQual) Approach

The CERQual approach was initially developed in 2010 to support a panel that was using qualitative evidence syntheses to develop a new World Health Organization (WHO) guideline [ 14 ]. The technical team for this guideline needed an approach for consistently and transparently assessing and presenting any concerns about the qualitative evidence synthesis findings being used by the panel to inform the guideline.

To develop CERQual, we established a working group of researchers involved in undertaking evidence syntheses. We needed an approach that could be applied to findings from common types of qualitative study designs (e.g., ethnography, case studies) and data (e.g., from interviews, observational), was easy to use, provided a systematic approach to making judgements, allowed these judgements to be reported transparently, and allowed judgements to be understood easily, including by readers without an in-depth understanding of qualitative methods. This work was informed by both the principles of qualitative research and the principles used to develop GRADE for effectiveness [ 15 ]. The guidance in this paper has also been developed in collaboration and agreement with the GRADE Working Group ( www.gradeworkinggroup.org ).

CERQual was developed iteratively. Our first version included two components—methodological limitations and coherence—and was piloted on five syntheses [ 9 , 16 – 19 ]. In 2013, we presented the CERQual approach to researchers, methodologists, and decision makers at a number of events, including the Cochrane Colloquium [ 20 ] and a GRADE Working Group meeting. We then revised the approach, based on feedback from these sessions, to include an additional two components. This gave the approach a total of four components: methodological limitations, relevance, coherence, and adequacy of data. We also identified a further potential component—dissemination bias—as being important but requiring further methodological research before we are able to make a decision on whether this should be included in the CERQual approach ( Box 2 ).

Box 2. Dissemination Bias in Qualitative Research

Dissemination bias (also referred to as publication bias) may be important for qualitative evidence syntheses in situations in which selective dissemination of qualitative studies or the findings of qualitative studies results in systematic distortion of the phenomenon of interest (see S1 Table ). However, empirical evidence on the extent of dissemination bias in qualitative research is very limited—to our knowledge, only one small study on this issue has been conducted [ 21 ]. Further, empirical evidence of the impacts of dissemination bias on qualitative evidence syntheses does not, to our knowledge, exist at present. We also do not have methods available for exploring whether the findings of a synthesis have been distorted systematically by dissemination bias.

A programme of methodological work is currently underway to explore both the extent and nature of dissemination bias in qualitative research and how such bias impacts on qualitative evidence synthesis findings.

To obtain further feedback, we presented the current, four-component version of the approach in 2014 to a group of 25 invited methodologists, researchers, and end users from more than twelve international organizations, with a broad range of experience in qualitative research, the development of GRADE, or guideline development.

Our work is not attempting to produce a rigid checklist to appraise review findings—the risks of applying such critical appraisal checklists unreflectively to qualitative primary studies have been discussed widely in the literature [ 6 , 22 – 24 ]. Rather, CERQual is conceived of as a structured approach to appraisal that requires reviewer judgement and interpretation throughout the approach. Our reasons for developing it are both epistemological and pragmatic. We believe that we should have different degrees of confidence in different findings from a qualitative evidence synthesis because of differences in the evidence that inform each finding. In developing the CERQual components, we have strived to capture core concerns of qualitative researchers such as richness of findings and the explanatory power of any interpretive concepts. We have also tried to respond to the needs of decision makers and other users for research that can usefully inform their policy and practice questions. Without a structured approach, judgements about confidence in a finding are likely to be made anyway by users, but in an ad hoc fashion. Indeed, without a structure for thinking about confidence in findings of qualitative evidence syntheses, these projects risk being further marginalised and underused in informing policy practice. We anticipate that the approach may be refined in the future through further development by the CERQual team and through experience in using the approach. The four CERQual components are described in detail below.

Purpose of CERQual

CERQual aims to transparently assess and describe how much confidence decision makers and other users can place in individual review findings from syntheses of qualitative evidence. We have defined confidence in the evidence as an assessment of the extent to which the review finding is a reasonable representation of the phenomenon of interest. Put another way, it communicates the extent to which the research finding is likely to be substantially different from the phenomenon of interest. By substantially different, we mean different enough that it might change how the finding influences a practical or policy decision about health, social care, or other interventions.

A CERQual assessment provides decision makers with the information they need to decide how much emphasis to give to a particular review finding. Box 1 outlines how a review finding is defined for the purpose of CERQual assessments, Box 3 summarises the purpose of CERQual as well as specifying the issues that CERQual is not intended to address, and S1 Table describes other definitions relevant to CERQual.

Box 3. The Purpose of CERQual and What CERQual Is Not Intended to Address

The CERQual approach transparently assesses and describes how much confidence to place in individual review findings from syntheses of qualitative evidence.

CERQual is not intended for the following:

• Critical appraisal of the methodological limitations of an individual qualitative study
• Critical appraisal of the methodological limitations of a qualitative evidence synthesis
• Appraisal of quantitative or mixed methods data
• Assessing how much confidence to place in the findings from what are sometimes described as “narrative” or “qualitative” summaries of the effectiveness of an intervention, in systematic reviews of effectiveness in which meta-analysis is not possible
• Assessing how much confidence to place in the overall findings of a qualitative evidence synthesis. Rather, it focuses on assessing how much confidence to place in individual review findings from qualitative evidence syntheses

Components of CERQual

Four components contribute to an assessment of confidence in the evidence for an individual review finding: methodological limitations, relevance, coherence, and adequacy of data ( Table 1 ). Concerns about any of these components may lower our confidence in a review finding. Each component is discussed in more detail below. The CERQual components reflect similar concerns to the elements included in the GRADE approach for assessing the certainty of evidence on the effectiveness of interventions ( S2 Table ). However, CERQual considers these issues from a qualitative perspective. This paper focuses on situations in which review authors assess how much confidence to place in findings from a review they have undertaken themselves. It may also be possible to apply CERQual to the findings from qualitative evidence syntheses performed by others, and this is discussed later.

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Methodological Limitations

Definition and explanation..

Methodological limitations are the extent to which there are problems in the design or conduct of the primary studies that contributed evidence to a review finding. When the primary studies underlying a review finding are shown to have important methodological limitations, we are less confident that the review finding reflects the phenomenon of interest.

Operationalizing “methodological limitations”.

When undertaking a qualitative evidence synthesis, review authors should assess the methodological limitations of each primary study included in the synthesis. This should be done using a relevant checklist or tool (for instance, [ 25 – 27 ]). An assessment of methodological limitations should be based on the methodological strengths and weaknesses of each study as there is no hierarchy of study design within qualitative research. Review authors should present and explain these assessments in the review appendices.

When assessing the methodological limitations of the evidence underlying a review finding, review authors must make an overall judgement based on all of the primary studies contributing to the finding. This judgement needs to take into account each study’s relative contribution to the evidence, the types of methodological limitations identified, and how those methodological limitations may impact on the specific finding.

How a primary study was conducted may constitute a methodological limitation for one review finding but not for another finding. For instance, in a study on sexual behaviour among teenagers, a decision to use focus group discussions to collect data may be regarded as a limitation for findings about teenagers’ perceptions of risky or illegal behaviour but may not be regarded as a problem for findings about teenagers’ perceptions of sex education. This is because teenagers may be less willing to talk frankly about the former within a group setting.

Implications when methodological limitations are identified.

When we identify methodological limitations for a particular review finding, this may indicate that primary researchers in this area need to use more appropriate methods or to report the methods used more clearly in future studies.

Relevance is the extent to which the body of evidence from the primary studies supporting a review finding is applicable to the context specified in the review question. This may relate to, for example, the perspective or population researched, the phenomenon of interest or the setting.

Relevance is important in assessing confidence as it indicates to the end user the extent to which the contexts of the primary studies contributing evidence to a finding are aligned with the context specified in the review question. When the contexts of the primary studies underlying a review finding are substantively different from the context of the review question, we are less confident that the review finding reflects the phenomenon of interest.

Operationalizing “relevance”.

For the most part, a review’s inclusion criteria for studies are aligned with the review question, and the included studies are therefore relevant to the review question. However, there are situations in which studies are of reduced relevance. This can be due to differences relating to any of the main domains in a typical review question. This may include differences in the perspective or population, the phenomenon of interest or intervention, the setting, or the time frame. We propose three ways in which relevance could be categorized: indirect relevance, partial relevance, and uncertain relevance.

The evidence supporting a review finding may be indirectly relevant if one of the review domains above, such as perspective or setting, has been substituted with another. For example, the authors of a qualitative evidence synthesis plan to address the question of people’s responses to the swine flu pandemic, but they find no studies exploring this question. However, the review authors identify studies looking at people’s responses to the bird flu pandemic. These studies are included as a likely alternative indicator of people’s responses to the phenomenon of interest (swine flu). Indirect relevance implies that the review authors (or others) have made assumptions about the relevance of the findings to the original review question.

Relevance may be partial when the studies identified for a review address only a subset of the relevant review domains above. For example, in a synthesis exploring how children living in care institutions across Europe experience different models of care, the review authors only identify studies from Norway. Only part of the review question is therefore addressed. Partial relevance implies that the review question is only addressed in a limited way. When this occurs, review authors need to determine which domains in the review question are most important in assessing relevance.

The degree of relevance may be assessed as uncertain when the review authors are unsure about the extent to which the focus of the included studies reflects the phenomenon of interest because of deficiencies in the reported details of the population, intervention, or settings. For example, in a qualitative evidence synthesis exploring cancer patients’ experience with mindfulness-based training, the review authors identify several studies. However, it is unclear whether all of these training programmes include similar approaches to both mindfulness and mindfulness-based training. Uncertain relevance implies that it is difficult to draw conclusions about the relevance of the review finding to the review question.

Our confidence in a review finding may be weakened if the relationship between the contexts of the primary studies and the review question is indirect, partial, or uncertain. Review authors should describe any concerns regarding the extent to which the review finding reflects the context of interest. This will allow end users to better understand the assessment and consider the finding in relation to their own context.

Implications when concerns regarding relevance are identified.

Concerns regarding relevance could indicate a need for more research in different contexts and for better reported primary research. However, they could equally indicate that the phenomenon that is the focus of the review is not prevalent in a given context. For example, a review of parental worries about their children’s health may not uncover European-based studies in which dysentery is mentioned. Rather than indicating gaps in relevant data, this is more likely to be because parents in Europe do not discuss fear of dysentery when asked specifically about their children’s health since it is not a common health problem in most high-income settings.

Qualitative review findings are developed by identifying patterns in the data across the primary studies included in an evidence synthesis. The coherence of the review finding addresses the question of whether the finding is well grounded in data from these primary studies and provides a convincing explanation for the patterns found in these data.

Coherence in the data contributing to a review finding may be contextual, where patterns are found across studies that are similar to each other with respect to population, interventions, or settings; or conceptual, where patterns in the data from the underlying studies can be explained in relation to new or existing theory. Patterns need to be explained and supported through data presented in the primary studies or through hypotheses developed by the primary study authors or the review authors.

Review findings are sometimes challenged by outlying, contrasting, or even disconfirming data from the primary studies that do not support or that directly challenge the main finding. Review authors should look actively for such data that complicate or challenge their main findings [ 28 ] and attempt to explain these variations or exceptions. When there is no convincing explanation for these variations or exceptions, we are less confident that the review finding reflects the phenomenon of interest. Guidance on what constitutes a convincing explanation needs further development.

Operationalizing “coherence”.

Confidence in a review finding may be lower when there is an unexplained lack of coherence. When theories or explanations are used to explain similarities or variations, review authors should specify whether the theory or explanation is internally generated (i.e., the theory or explanation comes from one or several of the studies underlying the review finding), externally sourced (i.e., the theory or explanation is imported from an external source, such as an established concept or theory), or original (i.e., the theory or explanation has been developed by the review authors as part of the synthesis process).

Reasons why it may be difficult to explain the variation in data across individual studies contributing to a finding include that the available data are too thin [ 29 ], outlying or disconfirming cases are not well explored, the review authors do not know the field sufficiently well to generate an explanation, the theory used to inform the review is incomplete or flawed, or the study sampling for the review was limited. Study sampling and the extent to which outlying cases were explored may also be assessed as part of the “methodological limitations” component of CERQual.

Since the patterns that constitute a review finding are created by the review authors, assessing coherence during the synthesis offers an opportunity for “self-check” or reflection. Examining the coherence of the review findings gives review authors an opportunity to reflect on the extent to which the pattern captured in the review finding really is contextually or conceptually coherent. It also gives review authors an opportunity to offer a convincing explanation for the patterns they have found and to note the presence of disconfirming cases.

Implications when concerns about coherence are identified.

Concerns regarding the coherence of a review finding can have several implications: firstly, review authors should consider using the patterns found across primary studies to generate new hypotheses or theory regarding the issue addressed by the finding. Secondly, a lack of coherence in relation to a particular review finding may suggest that more primary research needs to be done in that area and that the review should perhaps be updated once those data are available. Finally, when a review has used a sampling procedure to select studies for inclusion in the review [ 30 ], future updates of the review could reconfigure the sampling to explore the variation found.

Adequacy of Data

Adequacy of data is an overall determination of the degree of richness and quantity of data supporting a review finding.

In assessing adequacy of data, we define “rich data” as data that provide us with sufficient detail to gain an understanding of the phenomenon we are studying—for instance, an understanding of participants’ perceptions and experiences of a given topic. In contrast, thin data do not provide enough detail to develop an understanding of the phenomenon of interest.

In addition to data richness, quantity of data is also important. When a review finding is supported by data from only one or few primary studies, participants, or observations, we are less confident that the review finding reflects the phenomenon of interest. This is because when only a few studies or only small studies exist or when few are sampled, we do not know whether studies undertaken in other settings or groups would have reported similar findings.

Operationalizing “adequacy of data”.

Confidence in a review finding may be lower when there are concerns regarding whether there are adequate amounts of data contributing to a review finding. This could include concerns about the richness of the data or the number of studies, participants, or observations from which the data are drawn.

Review authors need to judge adequacy in relation to the claims made in a specific review finding. There are therefore no fixed rules on what constitutes sufficiently rich data or an adequate quantity of data. When considering whether there are adequate data, review authors may find the principle of saturation of data useful or could consider the extent to which additional data are likely to change the finding [ 31 – 34 ]. Review authors should also look for disconfirming cases. More work is needed on how to apply these strategies in the context of a qualitative evidence synthesis.

Implications when concerns regarding the adequacy of data are identified.

When adequacy of data is not achieved, this may suggest that more primary research needs to be done in relation to the issue discussed in the review finding and that the review should be updated once that research is available. Inadequate data may indicate that the review question was too narrow and that future syntheses should consider a broader scope or include primary studies that examine phenomena that are similar, but not identical, to that under consideration in the synthesis. This, in turn, might have implications for assessment of relevance.

Making an Assessment of Level of Confidence for a Finding

As noted earlier, our confidence in the evidence is an assessment of the extent to which the review finding is a reasonable representation of the phenomenon of interest ( S1 Table ). This assessment is based on the judgements made for each of the four CERQual components. These judgements can be summarised in a CERQual Qualitative Evidence Profile ( Table 2 ). While each CERQual component should initially be assessed individually, review authors also need to look iteratively across the components in order to make a final assessment as components may interact, as noted above, and also to avoid “double downgrading” for the same issue.

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To indicate our assessment of confidence, we propose four levels: high, moderate, low, or very low. This is a similar approach to that used in the GRADE tool for assessing confidence in the evidence on the effectiveness of interventions [ 35 ]. The levels of confidence for CERQual are defined in Table 3 . We propose that all review findings start off as “high confidence” and are then “rated down” by one or more levels if there are concerns regarding any of the CERQual components. This starting point of “high confidence” reflects a view that each review finding should be seen as a reasonable representation of the phenomenon of interest unless there are factors that would weaken this assumption. Confidence should be assessed for each review finding individually and not for the review as a whole. Future papers will describe in more detail for each CERQual component the circumstances under which confidence in a review finding should be rated down.

https://doi.org/10.1371/journal.pmed.1001895.t003

The assessment of confidence for a review finding is a judgement, and it is therefore particularly important to include an explanation of how this judgement was made. This is discussed further below. Our experience to date in applying CERQual suggests that it may be difficult to achieve “high confidence” for review findings in many areas, as the underlying studies often reveal methodological limitations or there are concerns regarding the adequacy of the data. Those assessing confidence in review findings should specify as far as possible how future studies could address the concerns identified.

Using a “Summary of Qualitative Findings Table” to Summarise the Judgements Made Using CERQual

A summary of qualitative findings table can be used to summarise the key findings from a qualitative evidence synthesis and the confidence in the evidence for each of these findings, as assessed using the CERQual approach. The table should also provide an explanation of the CERQual assessments. An example of a summary of qualitative findings table is provided in Table 4 . There are several advantages to providing a succinct summary of each review finding and an explanation of the CERQual assessment for that finding. Firstly, this may encourage review authors to consider carefully what constitutes a finding in the context of their review and to express these findings clearly ( Box 1 ). Secondly, these tables may facilitate the uptake of qualitative evidence synthesis findings into decision making processes, for example, through evidence-to-decision frameworks [ 13 ]. Thirdly, these tables help to ensure that the judgements underlying CERQual assessments are as transparent as possible.

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Applying the CERQual Approach

The first version of the CERQual approach has been applied in five reviews [ 9 , 16 – 19 ], three of which were used by WHO as the basis for the development of a global guideline [ 14 ]. The current version of CERQual has been used in one published review [ 36 ] and is currently being used in a further ten reviews, at least half of which are being produced to support WHO guidance. This experience has highlighted a number of factors that review authors should consider when applying CERQual to review findings, and we discuss these factors below.

General considerations.

To date, the application of CERQual to each review finding has been through discussions among at least two review authors. This seems preferable to use by a single reviewer as it offers an opportunity to discuss judgements and may assist review authors in clearly describing the rationale behind each assessment. In addition, multiple reviewers from different disciplinary backgrounds may offer alternative interpretations of confidence—an approach that has also been suggested to enhance data synthesis itself [ 28 ]. The approach is intended to be applied by review authors with experience in both primary qualitative research and qualitative evidence synthesis.

Assessments of each CERQual component are based on judgements by the review authors, and these judgements need to be described clearly and in detail. Providing a justification for each assessment, preferably in a summary of qualitative findings table, is important for the end user, as this shows how the final assessment was reached and increases the transparency of the process. Further, when end users are seeking evidence for a question that differs slightly from the original review question, they are able to see clearly how the assessment of confidence has been made and to adjust their own confidence in the review finding accordingly.

When making judgements using the CERQual approach, review authors need to be aware of the interactions between the four components. At this stage, CERQual gives equal weight to each component, as we view the components as equally important. Further research is needed on whether equal weighting is appropriate and on areas in which there may be overlap between components.

Our experience applying the CERQual approach so far has indicated that it is easiest to begin with an assessment of methodological limitations. Thereafter, it does not seem to be important in which order the other three components are assessed, as the process is iterative.

It is probably most appropriate for review authors to apply the CERQual approach to their own review, given that prior familiarity with the evidence is needed in order to make reasonable judgements concerning methodological limitations, coherence, relevance, and adequacy of data. However, in principle the approach could be applied to review findings from well-conducted reviews by people other than the review authors. Guidance for this will be developed in the future.

Considerations when assessing methodological limitations.

Qualitative research encompasses a wide range of study designs, and there are multiple tools and approaches for assessing the strengths and weaknesses of qualitative studies [ 26 , 27 , 37 – 40 ]. It is currently not possible to recommend a widely agreed upon, simple, and easy to use set of criteria for assessing methodological limitations for the many types of qualitative studies, and this may not be desirable given continued debates regarding different approaches and our desire for the CERQual approach to be used by the range of qualitative researchers involved in evidence synthesis. However, we believe that it is important to try to identify a minimum set of “core domains” for assessing methodological limitations, and this is a key area for future research.

Considerations when assessing relevance.

In the application of CERQual to date, relevance has been assessed by review authors and not by users, such as decision makers and those who support them or consumer groups. There may be instances in which such users would like to use review findings from a relevant synthesis, but their context differs to some extent from that specified in the review question. Transparent reporting of the assessment of relevance by the review authors provides these users with a starting point from which to understand the reasons behind the assessment. However, it may be difficult for users who are not familiar with the primary studies to assess the relevance to their own context.

Considerations when assessing coherence.

With the CERQual assessment in mind, review authors may be tempted to “smooth out” review findings to eliminate variation or to formulate review findings vaguely in order to artificially increase coherence. However, it is not the intention of CERQual to reduce variation within review findings. Identifying both similarities and differences in the primary data, including accounting for disconfirming cases, is an important part of developing review findings. Review authors should not attempt to create findings that appear more coherent through ignoring or minimising important disconfirming cases. As Patton (1999) points out, “Where patterns and trends have been identified, our understanding of those patterns and trends is increased by considering the instances and cases that do not fit within the pattern” ([ 41 ] p. 1191). Moreover, users of qualitative evidence syntheses are often specifically interested in where a review finding is not relevant or applicable, so as to avoid implementing interventions or guidelines that may be inappropriate or not feasible in their specific context.

Considerations when assessing adequacy of data.

While numbers can be important and useful in qualitative research, qualitative analysis generally focuses on text-based data [ 42 ]. The CERQual component of adequacy of data is not intended to encourage the counting of numbers of studies contributing to a review finding, but rather to focus review authors’ attention on where data may be thin or limited in relation to a review finding. In addition, fewer, more conceptually rich studies contributing to a finding may be more powerful than a larger number of thin, descriptive studies.

CERQual provides users of evidence with a systematic and transparent assessment of how much confidence can be placed in individual review findings from syntheses of qualitative evidence. In addition, the use of CERQual could help review authors to consider, analyse, and report review findings in a more useful and usable way. Qualitative evidence syntheses share with primary qualitative data analysis the need for multiple rounds of revisiting the data “as additional questions emerge, new connections are unearthed, and more complex formulations develop along with a deepening understanding of the material” [ 43 ]. The CERQual approach offers review authors a further opportunity for a more structured approach to analysing data. It guides them through a process of examining and appraising the methodological limitations, relevance, coherence, and adequacy of the data contributing to a review finding. The development of CERQual has identified a number of important research questions, and these are summarised in Box 4 .

Box 4. Way Forward and Research Agenda for CERQual

CERQual is a work in progress, and the following steps are planned to further develop the approach:

• Detailed guidance for review authors and others who wish to apply the approach is currently being developed. This guidance will address each component of CERQual, describe the approach to assessing levels of confidence, outline how to develop summary of qualitative findings tables, and provide worked examples.
• To date, CERQual has been piloted on evidence syntheses that have used framework [ 44 ] or narrative synthesis approaches [ 45 ] and that have produced largely descriptive findings. The approach now needs to be tested on syntheses that use other methods or that attempt to develop more explanatory findings such as midlevel theory generation, logic models, or conceptual frameworks. Plans for this are currently underway. This testing will help both to assess whether the approach needs to be expanded or adapted to accommodate different types of findings from the wide range of review approaches currently in use [ 46 ] and to develop appropriate guidance for this.
• Given the range of synthesis methods available and the many options for presenting review findings, review authors will need to judge on a case-by-case basis when it is appropriate to apply CERQual. Developing guidance on this is also an important area for further methodological research.
• The development of CERQual has identified several priority issues for methodological research, including identifying core domains for the assessment of methodological limitations in primary qualitative studies and exploring how to apply these, investigating the most appropriate order in which to apply the CERQual components to a finding, understanding the role of “dissemination bias” (e.g., whether studies with “novel” findings are more likely to be published) in the context of qualitative research, and exploring the circumstances under which it may be appropriate to increase or “rate up” confidence in a review finding in relation to a CERQual component.
• Sampling approaches may be employed in qualitative evidence synthesis as part of a priori inclusion criteria (e.g., based on language or study design) or later in the review process after all potentially relevant studies are identified. Studies may be sampled based on, for instance, principles of data saturation or theoretical sampling, or methodological quality [ 30 ]. Experience is needed with these types of reviews in order to establish the degree to which sampling impacts on CERQual assessments.

Some methodologists have critiqued tools that propose explicit criteria for appraising the quality of qualitative research, questioning whether such tools can adequately assess “quality” for this research method [ 22 ]. We take the standpoint, however, that ways of appraising both primary and secondary qualitative research are needed. Such approaches need to be appropriate to, and take into account the diversity of, qualitative methods [ 27 , 37 , 39 ]. As noted above, users of both primary qualitative research findings and qualitative evidence synthesis findings routinely make these judgements when reading and using these types of research. However, the judgements made by these users are implicit, which makes it difficult for others to understand and critique them—an important limitation when findings from such research are then used to inform decisions about health and social policies. CERQual attempts to make assessments of confidence in the evidence more systematic and transparent while accepting that these assessments are judgements that are likely to vary across assessors.

An intended consequence of the CERQual approach is to improve methodological quality and reporting standards in primary qualitative research. For an adequate CERQual assessment to be made, the authors of primary studies need to provide sufficient information about the methods they have used. Wide use of CERQual may thus encourage more thorough reporting of qualitative research methods.

To support the further development of CERQual and facilitate wide involvement of methodologists, researchers, reviewers, and other stakeholders in this process, we have established a GRADE-CERQual Project Group (see: www.cerqual.org ). This is an informal collaboration of people with an interest in how to assess confidence in evidence from qualitative evidence syntheses and is a subgroup of the GRADE Working Group. We would encourage those with an interest in this area to join the group and contribute to the development of the CERQual approach.

Supporting Information

S1 table. key definitions relevant to cerqual..

https://doi.org/10.1371/journal.pmed.1001895.s001

S2 Table. Comparison of the CERQual components and the elements of GRADE.

https://doi.org/10.1371/journal.pmed.1001895.s002

S1 Alternative Language Summary Points.

French translation of the Summary Points.

https://doi.org/10.1371/journal.pmed.1001895.s003

S2 Alternative Language Summary Points.

Italian translation of the Summary Points.

https://doi.org/10.1371/journal.pmed.1001895.s004

S3 Alternative Language Summary Points.

Norwegian translation of the Summary Points.

https://doi.org/10.1371/journal.pmed.1001895.s005

S4 Alternative Language Summary Points.

Spanish translation of the Summary Points.

https://doi.org/10.1371/journal.pmed.1001895.s006

Acknowledgments

Our thanks for their feedback to those who participated in the first GRADE-CERQual Project Group meeting in Barcelona in January 2014: Elie Akl, Zhenggang Bai, Rigmor Berg, Meghan Bohren, Jackie Chandler, Karen Daniels, Bela Ganatra, Andy Oxman, Tomas Pantoja, Kent Ranson, Rebecca Rees, Holger Schünemann, Birte Snilstveit, James Thomas, Hilary Thompson, and Josh Vogel. In addition, we received valuable feedback on this manuscript from Paul Elias Alexander, Meghan Bohren, Philippe du Clos, Joerg Meerpohl, Jasvinder Singh, and Özge Tuncalp and from discussions at several meetings of the GRADE Working Group.

Author Contributions

Wrote the first draft of the manuscript: SL CG HMK. Contributed to the writing of the manuscript: SL CG HMK BC CJC MG JN AB RG AR. Agree with the manuscript’s results and conclusions: SL CG HMK BC CJC MG JN AB RG AR. All authors have read, and confirm that they meet, ICMJE criteria for authorship.

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Are we entering a new era for qualitative research? Using qualitative evidence to support guidance and guideline development by the World Health Organization

• Simon Lewin   ORCID: orcid.org/0000-0001-7521-9515 1 , 2 , 3 &
• Claire Glenton 1 , 4  

International Journal for Equity in Health volume  17 , Article number:  126 ( 2018 ) Cite this article

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Qualitative approaches are one of several methodologies utilised within the social sciences. New developments within qualitative methods are widening the opportunities for using qualitative evidence to inform health policy and systems decisions. In this commentary, we discuss how, in our work with the World Health Organization (WHO), we have explored ways of broadening the types of evidence used to develop evidence-informed guidance for health systems.

Health systems decisions are commonly informed by evidence on the effectiveness of health system interventions. However, decision makers and other stakeholders also typically have additional questions, including how different stakeholders value different outcomes, the acceptability and feasibility of different interventions and the impacts of these interventions on equity and human rights. Evidence from qualitative research can help address these questions, and a number of WHO guidelines are now using qualitative evidence in this way. This growing use of qualitative evidence to inform decision making has been facilitated by recent methodological developments, including robust methods for qualitative evidence syntheses and approaches for assessing how much confidence to place in findings from such syntheses. For research evidence to contribute optimally to improving and sustaining the performance of health systems, it needs to be transferred easily between different elements of what has been termed the ‘evidence ecosystem’. This ecosystem includes primary and secondary evidence producers, guidance developers and those implementing and evaluating interventions to strengthen health systems. We argue that most of the elements of an ecosystem for qualitative evidence are now in place – an important milestone that suggests that we are entering a new era for qualitative research. However, a number of challenges and constraints remain. These include how to build stronger links between the communities involved in the different parts of the qualitative evidence ecosystem and the need to strengthen capacity, particularly in low and middle income countries, to produce and utilise qualitative evidence and decision products informed by such evidence. We invite others who want to support the wider use of qualitative evidence in decision processes to look for opportunities in their settings to put this into practice.

The growing use of qualitative evidence to support decisions, and the availability of methods that can help us use this type of evidence in knowledge-to-action cycles [ 1 , 2 ], suggest that we are entering a new era for qualitative research. Qualitative approaches are one of many methodologies utilised within the social sciences. Here we focus here on how new developments in the field of qualitative research are creating important opportunities for using qualitative evidence, including findings from syntheses of qualitative evidence, to inform health policy and systems decisions.

Health systems are complex, creating challenges for decision makers aiming to strengthen these systems and achieve the Sustainable Development Goals [ 3 ]. Most stakeholders agree, however, that decisions about which interventions or policy options to implement should be informed by the best available global and local evidence [ 4 , 5 ]. Within clinical care there is a long history of using evidence-based guidelines to inform decisions. However, evidence-based health systems guidance is a more recent development. Health systems guidance has been defined as “systematically developed statements produced at global or national levels to assist decisions about appropriate options for addressing a health systems challenge in a range of settings and to assist with the implementation of these options and their monitoring and evaluation” [ 6 ]. Health systems guidance can address issues such as options for funding national lay health worker programmes; which digital interventions might effectively support health care delivery; and ways of retaining health care providers in rural areas.

In our work with the World Health Organization (WHO) we have explored ways of broadening the types of evidence that are used to develop health systems guidance [ 7 , 8 ]. While questions of effectiveness are central to health systems decisions, decision makers also want to know more about how different stakeholders value different outcomes, the acceptability and feasibility of different interventions and the impacts of these interventions on equity and human rights [ 6 , 7 , 9 ]. Evidence from qualitative research can play a key role in addressing these considerations [ 8 ]. This is because well-designed qualitative research allows us to explore how people experience and conceptualise the world around them, including health systems and services; and can help us understand how and why these systems succeed or fail. For instance, a recent qualitative study of introducing and implementing humanised childbirth care in a referral hospital in Benin highlighted some of the challenges experienced by midwives and other health care providers in delivering such care, and developed a conceptual model of humanised care in this setting [ 10 ]. This primary study was, in turn, incorporated into a qualitative evidence synthesis (or systematic review of qualitative studies) of factors that influence the provision of childbirth care by skilled birth attendants in low and middle income countries [ 11 ]. This synthesis subsequently informed a WHO statement on skilled health personnel providing care during childbirth [ 12 ]. In addition to the WHO, a range of other organisations involved in producing guidance and health technology assessments are also increasingly using qualitative evidence to answer questions related to, for instance, the acceptability and feasibility of interventions. These organisations include the National Institute of Health and Clinical Excellence (NICE) in the United Kingdom [ 13 , 14 ], the Swedish Public Health Institute and the South African Fetal Alcohol Spectrum Disorders Task Team [ 15 ].

One example of the use of qualitative evidence to inform WHO guidance is the recent set of WHO recommendations on ‘Antenatal care for a positive pregnancy experience’ [ 16 ]. These include recommendations on health systems interventions to improve the quality of antenatal care and women’s use of this care. To ensure that women’s perspectives shaped the development of this guidance, the WHO first commissioned a qualitative evidence synthesis that gathered studies from across the world exploring what women want, need and value in pregnancy [ 17 ]. The WHO used this synthesis when determining the broader aims of the guidance and the key outcomes to be considered when gathering evidence and making recommendations. For instance, the concept of a “positive pregnancy experience” became the core focus of the guidance as a means of ensuring that person-centred health and well-being was prioritized. Also, the outcome “positive pregnancy experience” was included for most guidance questions, ensuring that each intervention was evaluated against this key issue for women. Following the scoping stage of the guidance, the WHO commissioned a second qualitative evidence synthesis to explore factors influencing women’s use of antenatal services [ 18 ]. These findings fed into the guidance process by answering questions about the acceptability and feasibility of the interventions to women and other stakeholders. A number of other recent WHO guidelines have used similar approaches [ 19 , 20 , 21 ].

The growing use of qualitative evidence to inform decision making has been facilitated by a number of key developments in the field, including better standards for reporting primary qualitative studies [ 22 , 23 ]; robust methods for undertaking qualitative evidence syntheses [ 24 ]; databases for rapidly identifying such syntheses within the health field [ 25 , 26 ]; the emergence of GRADE-CERQual - an approach for assessing how much confidence to place in findings from qualitative evidence syntheses [ 27 , 28 ]; and frameworks that facilitate the packaging of different types of evidence to facilitate transparent and systematic assessment by decision makers [ 29 , 30 ]. The challenge now is to mainstream these efforts so that qualitative evidence, ideally from syntheses of primary qualitative studies, is used more widely to develop health systems guidance and clinical guidelines within WHO and within other guideline development organisations. In our experience, one important constraint includes identifying teams to conduct policy-relevant qualitative evidence syntheses, particularly in low and middle income countries. We also need to explore further how to help members of guideline panels and other decision makers engage with different types of evidence and make judgements about these when formulating recommendations. In addition, we need to expand efforts to strengthen capacity in low and middle income countries to undertake health policy and systems relevant primary qualitative research.

For research evidence to contribute optimally to improving and sustaining the performance of health systems, it needs to be transferred easily between different elements of what has been termed the ‘evidence ecosystem’ [ 31 , 32 , 33 ]. This ecosystem includes those producing primary evidence and those synthesising the evidence; people producing evidence-informed decision products such as health systems guidance and clinical practice guidelines; those responsible for implementing evidence-informed options within health systems, including programme managers and decision makers; and those involved in delivering and using health services, including service providers, service users and citizens [ 31 ]. Recent developments within the field of qualitative research, including those described above, mean that we now have most of the elements of an ecosystem for qualitative evidence in place. Evidence from primary qualitative studies is now being gathered in evidence syntheses; the findings of these syntheses are being used in decision products such as guidance and policy briefs [ 34 , 35 ]; and decision products informed by qualitative evidence are being used to guide choices on health system options and, in turn, are informing choices by service providers and users. Finally, these health system strengthening initiatives are being evaluated through new primary qualitative research [ 36 , 37 ]. In addition, we now have a better understanding of how primary qualitative research should be designed to meet the needs of those synthesising research and decision makers.

Having the elements of a qualitative evidence ecosystem in place is an important milestone and suggests that we are entering a new and exciting era within the field of qualitative research. Of course, a number of challenges and constraints remain, as we have noted earlier. Other challenges include how to build stronger links between the communities involved in the different parts of the qualitative evidence ecosystem, including across all sectors relevant to the Sustainable Development Goals [ 3 ], and the need to strengthen capacity across settings and institutions, particularly in low and middle income countries, to produce and utilise qualitative evidence and decision products informed by such evidence. Our experience of working with the WHO has helped us to collaboratively develop methods for using qualitative evidence in guideline and guidance development. We realise, however, that we are also not yet making full use of the potential of qualitative evidence synthesis findings to shape the development of implementation considerations for guidance or to inform guidance contextualisation, adaptation and implementation processes at national and sub-national levels. This is in part because we need to explore both ways of integrating these findings with local evidence [ 4 ], including the knowledge and experience of local stakeholders, and approaches for working with local stakeholders to develop implementation options. Efforts are also needed to strengthen the capacity of local stakeholders to understand and use qualitative evidence. These are areas in which we and others are now doing methodological research.

As we take this work forward, we should also not forget what is perhaps the most important role that qualitative evidence can play in decision-making: representing the views and experiences of stakeholders, including vulnerable and marginalised groups who are often not represented directly. By drawing on the global body of qualitative evidence, qualitative evidence syntheses have the potential, when used together with direct stakeholder engagement, to help ensure that decisions are guided by stakeholders’ views and that these decisions do not widen inequities. As we have noted elsewhere, using qualitative evidence in this way may also contribute to increased transparency and accountability in public decision-making [ 27 ].

Our experiences of working with the WHO have taught us that the best way of learning is doing. We support Health Systems Global’s efforts to promote both primary and secondary social science research on health policies and systems, and to strengthen capacity and collaborations in this area [ 38 ]. However, we need to go further than producing more social science research that is policy relevant and is conducted in ways that address the tensions and complexities involved in commissioning and undertaking research across different settings and groups [ 39 , 40 ]. As a social science research community, we also need to work more closely with policy users and other stakeholders to build capacity for evidence use. We therefore invite others who believe that we need greater recognition of the value of qualitative research, and who want to support the wider use of qualitative evidence in decision processes, to look for opportunities in their settings to put these beliefs into practice.

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Acknowledgements

We would like to thank Karen Daniels, Ana Lorena Ruano, Kerry Scott and Stephanie Topp for their helpful and insightful comments on earlier versions of this commentary.

No funding was received for writing this commentary. Both authors have received funding from the Alliance for Health Policy and Systems Research, the Brocher Foundation, Cochrane, the Norwegian Agency for Development Cooperation (Norad), the Research Council of Norway and the WHO in relation to the ideas and work described in this commentary. SL receives additional funding from the South African Medical Research Council.

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SL and CG jointly wrote this commentary. Both authors read and approved the final manuscript.

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SL works as a health systems researcher and has a background in medicine and in sociology as applied to health. CG works as a health systems researcher and has a background in anthropology and the social sciences as applied to health and health care.

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Simon Lewin is the Joint Coordinating Editor for the Cochrane Effective Practice and Organization of Care (EPOC) Group and a Coordinator of the GRADE-CERQual Project Group. Claire Glenton is the Director of Cochrane Norway, an Editor for the Cochrane Effective Practice and Organization of Care (EPOC) Group and a Coordinator of the GRADE-CERQual Project Group. Both Simon and Claire have worked closely with the WHO on developing WHO guidelines and guidance.

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Lewin, S., Glenton, C. Are we entering a new era for qualitative research? Using qualitative evidence to support guidance and guideline development by the World Health Organization. Int J Equity Health 17 , 126 (2018). https://doi.org/10.1186/s12939-018-0841-x

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• Correction: Systematic review of qualitative studies on participants in the decision-making process about the location of care of the elderly - April 01, 2020

• http://orcid.org/0000-0002-4071-6981 Gema Serrano-Gemes 1 , 2 ,
• http://orcid.org/0000-0003-3317-267X Manuel Rich-Ruiz 2 , 3 ,
• http://orcid.org/0000-0002-9488-8295 Rafael Serrano-del-Rosal 1
• 1 Instituto de Estudios Sociales Avanzados (IESA-CSIC) , Consejo Superior de Investigaciones Cientificas , Córdoba , Spain
• 2 Instituto Maimónides de Investigación Biomédica de Córdoba (IMIBIC), Universidad de Córdoba (UCO), Hospital Universitario Reina Sofía (HURS) , Cordoba , Spain
• 3 CIBER de Fragilidad y Envejecimiento Saludable (CIBERFES) , Madrid , Spain
• Correspondence to Gema Serrano-Gemes; gserrano{at}iesa.csic.es

Objectives To understand who are the participants in the decision-making process about the location of care of the elderly.

Design Systematic review of qualitative studies.

Data sources The following databases were consulted: Web of Science, MEDLINE, Scopus, CINAHL, PsycINFO and SciELO (from the beginning until 29 November 2017). The bibliographical references in the studies that were finally included in the review were also searched.

Study selection The studies had to deal with the decision-making process (already experienced by the participants) on the location of care of the elderly (adults who are 65 or older), had to use a qualitative methodology and had to be written in English or Spanish.

Data extraction and synthesis A data extraction tool was used. Data analysis was conducted through the constant comparative method from Glaser and Strauss’ grounded theory.

Results 46 studies were included in this review. Most of them were carried out in the USA, and in 21 of them the study population focused exclusively on the elderly. This review has found that there are many participants, with different roles and degrees of involvement, who may act jointly, separately or sequentially. These participants may be: the elders, family members, professionals and other relevant.

Conclusions The main result of this review has been the variability found on how this decision is made, even varying the way of acting/perceiving the situation of the involved persons on certain occasions, simply due to the influence of some of the other groups of participants studied. Besides, this review has focused its results on the main participant in this process, the elders and how their family members interact with them when it comes to making this decision. This has allowed relevant results to be obtained about roles and degrees of involvement.

PROSPERO registration number CRD42018084826.

• qualitative research
• geriatric medicine
• health services administration & management

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2019-036551

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Strengths and limitations of this study

This review has synthesised and analysed in depth 46 studies including qualitative evidence on who the participants are, and their degree of involvement, in the decision-making process on the location of care of the elderly.

The review has performed an analysis of the quality of the studies, as well as a study of their relative contributions.

More studies are still needed to deal with this decision-making process from the point of view of healthcare and social services professionals, and other relevant participants, mainly friends and neighbours.

Introduction

Decision making in healthcare is very difficult. 1 Throughout the literature, there are different models for the decision-making process, the most widely known being: the paternalistic model, 2–4 the professional-as-agent model, 2 4 the informed decision-making model 2–4 and the shared decision-making model. 2–4

All these models may be analysed according to who is deliberating, how the exchange of information takes place and who the people responsible for the decision are. 3

Among them, the shared decision-making model has proven to be an adequate, feasible and suitable way to deal with the clinical encounter at present. 5 This is also important, among other reasons, because of its capacity to forge a new relation between professionals and individuals, ground on collaboration and also because persons want to be more implicated than they presently are in the decision-making process on their own well-being and healthcare. 6

This shared character has multiple benefits: both the persons getting care and the ones providing it are able to comprehend what is significant for the other one; persons feel empowered and aided to make informed decisions and achieve a shared decision on their care; and healthcare and social services professionals may adapt the treatment or care to the individual’s needs. 7

But, apart from that, shared decision making is a necessary element to optimise the usage of the scant resources in healthcare, 5 which has the potential to improve the way in which the resources are distributed and to reduce unjustified clinical variation. 6

However, despite all its benefits, the shared decision-making model is not an everyday practice. 8 In fact, many patients do not even expect to take part in decision making, 8 thus being a barrier for shared decision making when patients do not want to be involved, preferring to have a passive role. 9 As a matter of fact, according to the results of a systematic review of literature, patients assume that the role of ‘normal’ patients is to be passive and to expect clinicians to make the decisions. 9

In the specific case of the elderly, a recent review reports contradictory results in this regard, finding both studies pointing to the preference of the aged for a passive role and for an active participation. 1 The literature shows how the elderly, even if they do not wish to play an active role in medical decision making, want to be informed about their situation, as well as they consider it important to be listened to when they explain how they feel or what they think. 10

Together with their preference or opposition to participate actively, it is important to consider the attitudes of healthcare workers, as the bibliography also shows discriminatory attitudes on the basis of age in healthcare services, 11 revealing healthcare workers who think that elderly patients are not able to take part in the decisions on the healthcare they receive. 11 Those prejudices end up turning into attitudes of exclusion, such as, for instance, not asking elders about their preferences regarding care. 11

In short, the literature points out the need for more research on how the elderly make decisions about their health. 1 To do it adequately, planning and adapting their preferred level of involvement in the decision-making process has the potential to prevent hospitalisation and rehospitalisation, and to maintain their independence. 1

As a result, this research has focused on a specific event, relocation, which entails a big change in the lives of most persons, 12 usually seen as a stressful experience. 12 If this is emotionally significant at any moment in life, it is particularly so in old age. 13 In addition, the elders being relocated is a growing group of people. 14

Therefore, our research question in this paper is: who takes part in the decision-making process about the location of care of the elderly? The objective of this review would thus be to synthesise the existing evidence obtained using qualitative methodology in order to achieve a deep understanding of who takes part in the decision-making process about the location of care of the elderly.

This review is part of a broader review of the study of how the decision-making process takes place on the location of care of the elderly, which focused on three very important aspects: who the participants are, their experiences and the motives/reasons involved in the decision-making process. Due to the large amount of information found in the literature and its relevance, the authors of the review decided to answer each of the research questions separately.

To synthesise the existing evidence, we performed a systematic review of qualitative studies, which was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement 15 ( online supplementary file 1 ) and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement. 16

Supplemental material

Systematic review has been registered in the PROSPERO database.

Data sources

The following databases were consulted: Web of Science (core collection of Web of Science), MEDLINE (through PubMed), Scopus, CINAHL Complete (through EBSCOhost), PsycINFO (through ProQUEST) and SciELO Citation Index (through Web of Science).

The search in the databases was developed from the beginning of the databases to 29 November 2017.

The different search strategies used in each database are accurately shown in the published review protocol ( online supplementary file 2 ). 17

In addition, we reviewed the reference list of the papers which have been finally included, searching all the possible relevant papers.

Study selection

Eligible studies were those dealing with the decision-making process (already experienced by the participants) on the location of care of the elderly (adults who were 65 or older), and reporting qualitative research data.

Studies had to be written in English or Spanish, because these are the languages spoken by the reviewers.

More detailed information about the eligibility criteria used can be consulted in the published review protocol. 17

Data collection process

Before starting the article selection process, duplicate citations obtained from the different databases were eliminated.

Thus, first the titles and abstracts of all the obtained citations were screened. Afterwards, the full-texts papers of those citations of interest were read, taking into account the inclusion and exclusion criteria to select those suitable for inclusion.

This process was carried out by two reviewers independently, who met to discuss their impressions periodically, consulting a third reviewer only in cases where there was disagreement.

The detailed data collection process is shown in a flow chart ( figure 1 ).

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Flow chart (modified Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2009 flow diagram). 15

Data extraction

A tool for data extraction was used to extract information about the title, year of publication, country, language, authors, objective, design/methodological basis, sample, techniques/methods for information collection, data analysis methods/techniques, ethical considerations, results, final conclusion, strengths and limitations and comments by the reviewers.

The descriptive information has been classified in online supplementary file 3 , while the information regarding the results was first classified and subsequently analysed.

The entire process was developed by two of the authors, and in cases where there was no agreement, the third author mediated.

Quality assessment

The quality of the studies included in this review was evaluated using the Critical Appraisal Skills Programme Español (CASPe): Plantilla para ayudarte a entender un estudio cualitativo. 18 This evaluation, together with the relative contributions of different studies to the results of this review according to their quality (taking into account a process proposed by other authors) 19 is shown in table 1 .

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Quality assessment and relative contributions

Thus, this review understands as a relative contribution each of the contributions of the studies included in our review to the results of the same one. Taking this into account, a score of 1 means that the study has provided information to a single aspect, while a score of 20 means that that study has contributed on 20 occasions to the results of the review.

On the other hand, to give a score to the quality of the included papers, the score and classification system proposed by Butler et al 20 has been used: every ‘Yes’ scores 1 point, every ‘Not sure’ scores 0.5 points and every ‘No’ scores 0. Later, that same author classifies them into three categories: high-quality paper (scores 9–10), moderate-quality paper (scores 7.5–9), low-quality paper (less than 7.5) and those under 6 points are excluded. 20 In this review, however, the quality of the studies was not part of the inclusion or exclusion criteria, and that is why the studies have not been excluded because of their quality.

Patient and public involvement statement

Patients and public are not involved in this study.

Data analysis

The data analysis was carried out through the constant comparative method 21 from Glaser and Strauss’ grounded theory. 22 First, a complete reading of the results and conclusions of the different studies was carried out. Subsequently, the information corresponding to the objective of this review (who takes part in the decision about the location of care of the elderly) was identified, using the authors’ interpretations and textual quotes. Finally, categories and subcategories emerged, whose origin was the main topic of the study, which can be found in the Results section.

Forty-six studies were included in this systematic review ( figure 1 ), all of them written in English. These studies were carried out in 14 countries: 20 in the USA, 23–42 6 in Canada, 43–48 5 in Sweden, 49–53 3 in New Zealand, 54–56 2 in Finland, 57 58 2 in Australia, 59 60 2 in Taiwan, 61 62 2 in the UK 26 63 (1 in England), 63 1 in Germany, 50 1 in Israel, 64 1 in Norway, 65 1 in South Korea, 66 1 in China 67 and 1 in Japan. 68 Seven of these studies have been published in the last 5 years. 41 42 52 53 56 58 64 As far as the participants are concerned, 21 of the studies focused exclusively on elders, 23 24 29 31 33–38 43 47 50–53 56–58 60 63 12 only on family members, 25–27 41 44–46 48 49 61 62 66 5 included elders and family members, 32 39 55 59 64 3 included professionals, family members and elders, 28 54 67 2 focused on family members and professionals, 40 65 2 dealt with the researcher’s personal experience as a family member of an involved elder 30 42 and 1 used patient records. 68 For a detailed view of the characteristics of the included studies, please refer to the online supplementary file 3 .

As for the quality of the included studies, most are of a moderate quality (22 papers). 23 25 28–30 32 36 39 41–43 49 50 54–57 61 63 65–67 Meanwhile, 16 papers are of a high quality, 27 31 33 37 38 40 44–48 51 52 60 62 64 2 of them achieving the highest score. 51 62 On the contrary, only 8 out of the 46 included papers are of a low quality. 24 26 34 35 53 58 59 68

As regards their relative contribution to the obtained results, it may be observed that there is no connection between the studies’ quality and their relative contribution to the review’s results, since there are papers which have obtained a low quality score and have had a high score in relative contribution, as is the case for Groger, 24 or the opposite, with a high quality and a low contribution, as is the case for Söderberg et al. 51 The paper with the highest relative contribution is Laditka 42 (with a moderate quality), and the one with the lowest relative contribution is Jorgensen et al 54 (with a moderate quality). For more details, see table 1 .

Below is the summary of the results with the corresponding categories obtained. The original quotes (OQ) from the papers included in the review, which exemplify the categories of interest, are listed in detail in online supplementary file 4 .

Participants in the decision-making process

One of the most important characteristics found throughout this review on the decision-making process to choose the location of care of the elderly is the existence of many participants with different roles and degrees of involvement.

To sum up, these participants may be classified into: the elderly persons themselves, 23–68 family members, 24–33 36 38–49 51 53–56 59 61–68 healthcare and social services professionals 23–25 27 28 30 36 40 42–49 51–53 55 56 58 59 61–63 65 68 and other relevant participants. 25 27 31 33 36 37 40 42 46 48 56 62 67

The participation of the elder in the process to decide where he or she will receive care ranges from a complete lack of participation to an active decision made on their own.

Active participation

In this review, the active participation of elderly people in this decision-making process has been understood differently 23 24 28–31 33–39 42 43 47 49 50 52 53 55–58 60 62–64 67 68 : taking into account both the decisions and actions performed by the elders on their own, and those where they were accompanied by other people.

On their own

According to our results, in most cases, the elders are the decision owners, making it actively and responsibly, even getting involved in the different roles concerned in this decision-making process 23 24 28 29 31 34–39 43 49 50 52 53 56–58 60 62–64 67 68 (OQ1). 24

By doing so, getting involved in the decision-making process, many elders are able to keep control and to decide, 23 35 50 52 57 which allows them to suitably manage their everyday life and to stay at home, 35 50 52 but also, at the same time, to be ready for a possible relocation 50 (OQ2). 52

In fact, on some occasions, the decision is even taken pre-emptively, 29 35 53 57 60 which leads to the elderly person to relocate prematurely/pre-emptively 29 35 53 60 (OQ3). 60

However, on other occasions, the elders act in the completely opposite way, postponing the decision. 35 50 63 These persons do not only postpone the decision, they do not even want to talk about it, 35 63 therefore being unable to act pre-emptively. 35 This makes them even get to delegate the responsibility for taking the decision on when to relocate. 35 50

Accompanied

The second most common situation is when the elderly are accompanied 24 28–31 33 35–37 39 42 47 49 52 53 55 56 58 60 63 64 67 68 by different people in this process.

To a greater extent, they are accompanied by their families, 24 28–31 33 35–37 39 42 47 49 52 53 55 56 58 63 64 67 followed by different healthcare and social services professionals 24 28 30 49 52 53 56 58 63 and, lastly, by other relevant participants, 31 33 36 37 53 56 60 such as friends. 31 33 36 37 56 All these people may provide either a positive or a negative support, and they may have a different degree of involvement.

Some participation

A mid-point in the responsibility gradient in decision making would be when the elderly person has some participation in the decision making. 24 30–32 36 38 39 42–46 48 53 59 61 64 65 67 This means that, as opposed to what is said in the previous sections, where the elder would actively participate in the decision-making process, in this category the elders find themselves involved in the process somehow, but not with a complete responsibility.

Thus, it is also the case that sometimes the elderly simply accept decisions made by other people, so they do not actually get to make the decision 24 30–32 39 42 43 46 53 64 67 (OQ4A 64 /OQ4B 43 ).

On some occasions, the decision is accepted only after a process of negotiation of the different proposals made by family members. 30 59 67

Nevertheless, even if the elders are not the ones deciding, their participation, although partial, influentially contributes to the final decision. In many of these cases, the elders are listened to and their opinions are respected and taken into account 30 42 44 46 65 (OQ5). 46 On other occasions, even though at first their family members try to convince them, in the end, they end up respecting the elder’s opinion 65 (OQ6), 65 even postponing the decision to relocate because the elder refused to do so 30 42 46 65 (OQ7). 46

The elders do not decide

Lastly, it bears mentioning that on many occasions there are cases where the elders to not participate in any way 24–27 36 38 40 41 43–48 51 53 55 56 61 65 66 68 in the decision-making process, even if they have no cognitive problems 48 ; the decision is simply taken for them 24–27 36 38 40 41 43–48 51 53 55 56 61 65 66 68 (OQ8). 38

Many of this elders are not even consulted, but are only informed of the decision once it is already made 24 43 47 55 56 65 (OQ9). 24 On the other hand, some elders simply realised that they were being relocated and they would not go back to their previous homes. 47 51

Finally, in the most negative extreme of this lack of participation, there are elders who claim having been deceived 38 during the decision-making process (OQ10). 38

Family members

Considering the results obtained in this review, we decided to analyse the role of the family in the decision-making process, according to what their behaviour was like in relation to the elder affected by the decision.

Taking this perspective into account, family members, in general, usually adopt two completely opposite kinds of behaviour: taking into account the elder, 24 30–33 36 38 39 42 43 45–49 53 55 56 59 61 64 65 67 or not taking him or her into account. 24 25 36 38 39 43 46–48 53 59 61 65

Taking into account the elder

In general, those family members who act taking into account the concerned elder usually adopt positive behaviours 24 30–33 36 39 42 43 45–47 49 53 55 59 61 64 65 67 throughout this process. Some examples of this kind of positive behaviours would be those cases where the family members take on a mediator role so that the wishes and decisions of the elders are fulfilled 30 42 49 55 (OQ11), 55 also being an example when they listen to and respect the preferences of the elder, 30 39 42 46 49 55 64 67 and even, if necessary, postpone the relocating decision due to the refusal of the elderly persons 30 42 46 49 (OQ12). 46

However, the fact is that taking into account the elders does not always mean having a positive behaviour. In fact, on some occasions, family members get to adopt different negative behaviours 24 38 48 49 56 61 64 65 as regards the decision-making process about the elders. Some examples of these negative behaviours would be to outright lie to the elders 38 48 (OQ13) 48 or to use persuasion. 49 Even so, although some family members tried to use persuasion, 49 61 65 in some cases, in view of the elders’ refusal, they did not get to act against their will 65 (OQ14). 65

There are other cases in which, due to the persistence of family members, the elders end up relocating, 64 or the family members force the elders, 24 56 even to relocate without their partners. 56

Not taking into account the elder

Despite the fact that most of the studies included in this review deal with situations where family members take into account the elders in some way, this is not always the case. In fact, the situations where family members do not take the elder into account in any way usually occur due to the elder’s cognitive impairment 46 61 (OQ15). 46 However, even if this may be the most common situation, our results have also found references to situations where the elders are excluded despite not having cognitive impairments. 48

The family members who behave like this usually decide without the participation of the elders, 25 36 38 43 just informing them once the decision has already been made 24 36 38 39 47 65 (OQ16). 38 Nonetheless, in some cases the exclusion of the elder is premeditated, deciding to relocate him or her as a form of punishment. 59

Professionals

As for healthcare and social services professionals, there is a broad range of both types of professionals involved and the way they are referred to.

The most usual way to name them in the studies is ‘healthcare professionals’, 27 43–46 53 59 63 65 although ‘service provider’ is also used. 28

However, the most common way to refer to the professionals is to name the different professional groups involved in this process (from the most often named to the less often named): physician, 23 24 27 28 40 44 45 47 49 53 59 62 65 social worker, 24 27 28 36 44 45 48 53 59 68 nurse, 30 36 44 45 47 59 65 care manager/case manager, 28 42 44 49 51 home healthcare leader 65 and occupational therapist. 44

There are also references to different institutions involved in the process, as may be the ageing and home healthcare agencies, 28 42 and even home healthcare services 42 ; or the geriatric evaluation units. 44

On the other hand, the studies also refer to professionals linked to certain institutions, such as evaluators linked to communities, 42 or the residence directors. 46 56

Finally, it bears mentioning a particularly divergent case as regards the participation of professionals, and it is the case of hospital staff. 25 28 30 40 42 52 55 56 58 61 The different studies include references to a wide range of attitudes, from an almost complete absence and lack of interest for the elder’s living conditions, 42 focussing exclusively on medical issues 42 ; to their involvement in the discussion of plans, care options and information 25 28 30 40 52 56 59 61 or to even completely taking on the decision on where the elder should receive care 55 58 61 (OQ17). 55

Other relevant participants

Lastly, this review has also found a fourth category of participants, which would be that of other relevant participants, which includes all those people who are relevant and influential in the decision-making process, but are not included in the previously mentioned categories.

In this group, friends and neighbours 25 27 31 33 36 37 40 42 46 48 56 62 67 are the participants who seem to be the most important and influential for the rest of participants, being essential, for instance, to validate the decision, that is, to recognise the decision taken as appropriate 25 (OQ18). 25

This category also includes support groups, 40 and even, on some occasions, people on the street are also included in the category. 25

Principal findings

The review conducted here included 46 articles of interest with qualitative data, thanks to which it has been possible to respond to the objective of this review, to understand in depth who takes part in the decision-making process about the location of care of the elderly.

Thus, the results of this review identify several involved participants, with different roles and degrees of involvement. These participants are the elders affected by the decision, their family members, the healthcare and social services professionals, and other relevant participants, such as friends and neighbours.

The elders themselves, the people mainly affected by this decision, may act on their own, be accompanied (mainly by their families), just have some participation in the decision or not participate at all. Among all of them, acting on their own has been the option with the highest number of references in our results. This coincides in some way with the literature, which shows how elders want to be involved in making autonomous decisions in different fields, like those linked to their care, treatment and everyday life. 69 However, another recent review of the literature, which addresses the decision of location of care and end of life, it points out how most older people were excluded from the decision totally, although they also note that there were elders who were actively included or even made autonomous decisions, although they were not in the majority. 70

Because of these differences with respect to whether or not the older person is involved in the decision-making process about the location of care, further research is needed to see which factors influence and act directly on not only the capacity or possibilities for participation, but also on the desire to participate, to take part actively, and even to act pre-emptively.

On the other hand, in spite of family members usually taking into account the elders, we have also found situations where they act without taking the elders into account, usually when there are cognitive problems. Our results coincide with those of a recent review, which shows how some carers both talk about the decision with older people and not talk about it, noting how in some cases older people could not be implicated because of cognitive problems. 70 These reactions seem to be supported by the literature, since, as a recent systematic review on dementia claims, when dementia progresses, the person suffering from it loses the mental capacity to make more complex decisions, and the caregiver turns into the surrogate decision-maker, changing the couple’s relationship and reverting the roles in parents and children. 71

As for professionals, this review shows a wide range of variety, roles and degree of involvement from the professionals taking part in this decision. In the review of Garvelink et al , 70 the role of health professionals is also pointed out, seeing that they offer information, instruct the decision makers, initiate the decision or even are the ones who make the decision, among other roles. 70 However, Garvelink’s review does not specify the different types of professionals involved, as it does our review, the physician being the professional most often mentioned in the reviewed papers in our review.

Lastly, apart from the three above mentioned main groups of participants, there is another group of people who are relevant in the decision, including, for instance, support groups, but, above all, friends and neighbours, who are not only mentioned more often, but they seem to have a greater influence. Among other things, they help to validate the decisions, which was already mentioned in the systematic review by Jacobson et al , 72 on the experiences of carers of elders who have been relocated to a facility. This review’s results pointed out that carers usually felt that they had a minimum control in the decision making and in the relocating process, and that they sought validation from friends, family members and professionals. 72

Limitations

This systematic review has some limitations. The main one is that it was not always possible to count on the perceptions or opinions of participants in the decision-making process directly, but on certain occasions it was only possible to have access to these experiences on the basis of the accounts of other participants in the process.

In addition, given the magnitude of de quantity of information found and analysed, we have chosen to analyse the interpretations made by the authors of the studies included, summarising and extracting, in certain cases, some direct quotations, because of their greater clarity and relevance to the review’s results.

Future research

First of all, regarding future lines of research on this topic, we consider that more research whose object of study is the professionals involved in the decision-making process, as well as other relevant participants, because few articles have been found that primarily address their views. These studies would be not only interesting from an academic point of view, but could also help directly to both professionals facing this decision in the future and elders themselves, family members and their immediate environment, by bringing out their unique and personal perspectives.

Furthermore, although many primary qualitative studies have been found, they focus only on 14 countries, most of them Western countries. Therefore, it would be interesting if more research were carried out on the decision-making process of older people in different areas of the world (with different cultural norms and values). Thus, this process could be studied in more detail and depth, and it could be possible to see whether or not there are differences in who participates in this decision and how the participants relate to each other.

The main result of this review has been the high variability found in the literature on how the decision on the location of elderly care is taken. There is no pattern or single way to proceed, and, on some occasions, the way the people involved act or perceive the situation varies due to the influence of some of the other groups of participants studied.

Despite that, this review has obtained relevant and really noteworthy results as far as the roles and degrees of involvement are concerned, thanks to having focused on the main participants in this process, those who are directly affected by the decision: the elders.

Thus, the different ways in which the elder is involved in the decision-making process have been analysed, to a greater or lesser extent, as well as how those closest to them, their family members, relate to the elders when it comes to making this decision. In this regard, it is highly interesting how some behaviours that may seem positive a priori, such as taking into account the elder, are not always linked to positive behaviours from the family members.

However, the existence of other participants in the literature also bears mentioning, who have been classified into two big groups: healthcare and social services professionals (physician being the most often mentioned category, followed by social worker and nurse), and other relevant participants in the decision-making process (the elder’s friends and neighbours being the most often mentioned). Nevertheless, more research is still needed to go in-depth on their experiences and/or opinions throughout this process.

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Contributors G-S-G conceived the study and the study design. G-S-G developed and executed the search strategy. G-S-G, R-S-d-R and M-R-R prepared the draft of the systematic review, edited the draft systematic review and read and approved the final manuscript.

Funding This work was supported by Ministerio de Educación, Cultura y Deporte para la Formación de Profesorado Universitario (Gobierno de España), the first author being recipient of an aid for the training of university teachers.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Patient consent for publication Not required.

Ethics approval This systematic review did not require ethical approval.

Provenance and peer review Not commissioned; externally peer reviewed.

Data availability statement This review is part of a broader review. All data relevant to this review are included in the article or uploaded as supplementary information.

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• Correction Correction: Systematic review of qualitative studies on participants in the decision-making process about the location of care of the elderly British Medical Journal Publishing Group BMJ Open 2020; 10 - Published Online First: 28 Apr 2020. doi: 10.1136/bmjopen-2019-036551corr1

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• Published: 10 June 2020

Women’s experiences of decision-making and informed choice about pregnancy and birth care: a systematic review and meta-synthesis of qualitative research

• Cassandra Yuill   ORCID: orcid.org/0000-0002-3918-5917 1 ,
• Christine McCourt 1 ,
• Helen Cheyne 2 &
• Nathalie Leister 1  

BMC Pregnancy and Childbirth volume  20 , Article number:  343 ( 2020 ) Cite this article

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The purpose of this systematic review (PROSPERO Ref: CRD42017053264) was to describe and interpret the qualitative research on parent’s decision-making and informed choice about their pregnancy and birth care. Given the growing evidence on the benefits of different models of maternity care and the prominence of informed choice in health policy, the review aimed to shed light on the research to date and what the findings indicate.

a systematic search and screening of qualitative research concerning parents’ decision-making and informed choice experiences about pregnancy and birth care was conducted using PRISMA guidelines. A meta-synthesis approach was taken for the extraction and analysis of data and generation of the findings. Studies from 1990s onwards were included to reflect an era of policies promoting choice in maternity care in high-income countries.

Thirty-seven original studies were included in the review. A multi-dimensional conceptual framework was developed, consisting of three analytical themes (‘Uncertainty’, ‘Bodily autonomy and integrity’ and ‘Performing good motherhood’) and three inter-linking actions (‘Information gathering,’ ‘Aligning with a birth philosophy,’ and ‘Balancing aspects of a choice’).

Conclusions

Despite the increasing research on decision-making, informed choice is not often a primary research aim, and its development in literature published since the 1990s was difficult to ascertain. The meta-synthesis suggests that decision-making is a dynamic and temporal process, in that it is made within a defined period and invokes both the past, whether this is personal, familial, social or historical, and the future. Our findings also highlighted the importance of embodiment in maternal health experiences, particularly when it comes to decision-making about care. Policymakers and practitioners alike should examine critically current choice frameworks to ascertain whether they truly allow for flexibility in decision-making. Health systems should embrace more fluid, personalised models of care to augment service users’ decision-making agency.

Peer Review reports

‘Choice’ has increasingly become a fundamental aspect of Western public health policy and practice, since the late twentieth century. In United Kingdom’s (UK) National Health Service (NHS), for instance, informed choice is considered an ethical principle that guides ‘patient-centred care’. For maternity care, it is a buzzword that has engendered a growing body of literature around how to best facilitate decision-making and achieve informed choice among parents. However, promoting more service user autonomy and care experiences that are aligned with personal values can lead to complex trade-offs, as choices are based on more sophisticated, expanding services with less reliance on clinician’s intuitive judgment [ 1 ]. The issue remains that, while maternity care professionals believe they are offering choice, in reality, women still have a limited role in decision-making and do not feel their care is presented as a choice. [ 2 , 3 ] Some researchers have argued that informed choice, in particular, is, “at best, illusory”. [ 4 , 5 ] Presently, there are few systemic reviews related to it, or to women’s experiences of decision-making about pregnancy and birth care. We sought to address this gap and assess the qualitative research that has been undertaken to date.

Concepts of decision-making

Long-standing conceptualisations of decision-making and informed choice often assume that the decider uses a rational process to weigh up and decide between all available options [ 6 ]. This ‘rational process’ is connected to the tenets of classical decision theory, a concept that stretches across several disciplines, statistics, economics, neuroscience, physiology and psychology, and has been developed and discussed since the 1950s. [ 7 ] Classical decision theory is a collection of models of uncertainty, risk and utility that “prescribe the optimal choice of an option from an array of options, where optimality is defined by the underlying models and the choice is dictated by an explicit rule”.[[ 8 ] p21].

The quality of human decision-making, in actuality, is frequently evaluated using the standards of classical decision theory; however, this has not rectified the persistent issue that human behaviour does not necessarily conform to these standards and cannot be adequately described by them. 8 Moreover, the long-held, assumed prescriptive and normative functions of the theory means that contemporary models of decision-making continue to inhabit these roles. The well-established health care model of ‘shared decision-making’ (SDM), “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences” [[ 9 ] p1361], is framed as an idealised process that flows from smooth interactions between health care professionals (HCPs) and service users.

The SDM approach aims for HCPs to facilitate service users’ movement from ‘initial preferences’ to ‘informed preferences’. Although the model steps away from clinicians making decisions outright for people, ‘preferences’ implies that service users are still not in full control of the ultimate care decisions or choice outcomes. The authors of the SDM model do acknowledge that it “is a simplification of a complex, dynamic process”, and as an educational tool for clinicians, it may prove effective; however, the extent to which it gives services users more power in the decision-making process is not well established, nor is there evidence of any association between SDM and service user health outcomes [ 10 , 11 ].

Emerging models of maternity care

Outlining the assumptions underpinning decision-making and informed choice is important given the growing evidence of the benefits of different models of and options for maternity care in Western settings, and the prevailing notion of reproductive choice as a human right. Research demonstrating the positive clinical and social outcomes of midwifery-led continuity of care models [ 12 ], non-hospital birth settings [ 13 , 14 , 15 ] and reduced medical interventions [ 16 ] means there is an evidence base to underpin and strengthen the desirability of providing options. However, slow or stagnant uptake of new options among service users can be confounding, meaning policymakers and HCPs often rely on experiences of decision-making and choice to inform the best way to go about facilitating it. With the amalgamation of evidence concerning the clinical outcomes of different care options, it should follow that we also bring together the findings about women’s experiences of choosing these options. However, to date, there are few systematic reviews of qualitative research on women’s experiences of decision-making and informed choice. Previous reviews have focused on decision-making in regards to antenatal screening [ 17 ] and delayed childbearing [ 18 ], what women value during childbirth [ 19 ] and how informal information sources influence birth decisions. [ 20 ]

In this review, against the changing maternity service landscape, we ask: what are women’s experiences of decision-making about pregnancy and birth care, and how is informed choice being addressed in this research to date? There are many definitions of informed choice; it is generally seen as a choice that is based on availability of relevant and balanced information. For the purposes of this review, we did not seek to provide a working definition of informed choice, as this forms part of our focus of enquiry. The review instead sought to include all studies with a stated focus on the issue, each of which could potentially define informed choice in a different way.

As the review encompassed published qualitative data, we employed a meta-synthesis approach to explore the relevant literature, which is anchored around “bringing together and breaking down of findings, examining them, discovering essential features and, in some way, combining phenomena into a transformed whole”.[[ 21 ] p314] This new interpretation of, or ‘going beyond’ [ 22 ] research is one of the key aspects that sets a meta-synthesis apart from a meta-analysis, which aggregates findings to establish ‘truths’. The search and screening were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, an evidence-based framework used for reporting in systematic reviews [ 23 , 24 ], and was registered on the PROSPERO (Ref: CRD42017053264) database of protocols for systematic reviews.

Reflexivity

The review team was composed of four researchers who specialise in maternal and child health, maternity care and services and midwifery, and who conduct qualitative research on parents’ experience of maternity and birth care, primarily in the UK and Brazil. The first (CY) and second (CM) reviewers are medical anthropologists, and the third (HC) and fourth (NL) reviewers have backgrounds in midwifery, meaning we approached this review and meta-synthesis with an interdisciplinary lens.

Systematic search and screening

The initial search for articles was conducted on EBSCO (Academic Search Complete, CINAHL, Medline, SocIndex, PsycARTICLES), OVID (Embase, Global Health, Maternity and Infant Health Care) and Web of Science in January 2017. The grey literature was searched using OpenGrey and EThOs. A second search, which limited the results to articles published between 2017 and 2019, was run in August 2019 to check for new literature. Study content was not limited to a specific geographic region; however, articles had to be published in English. The searches focused on pregnancy and childbirth and did not include family planning, infertility, abortion or postnatal care as the focus was on choices about pregnancy and birth care . The search was filtered for studies employing qualitative or mixed methods research designs and analyses, which was key for the data extraction and synthesis process. Quantitative studies and quantitative findings from mixed methods studies, RCTs and open-ended questions from survey studies were excluded. The search strategy included Boolean phrases of “AND” and “OR”, and terms were generated using MESH headings, database thesaurus and free text. An example of the search strategy that was used on EBSCO is detailed in Table  1 .

Articles were screened for fit with the inclusion criteria independently by two reviewers (CY and CM), first by title, then by abstract and following this by full text. In cases of uncertainty or disagreement, the third (HC) and fourth (NL) reviewers’ views were sought. Although potentially relevant to a wider discussion, to maintain the focus of the review on decision-making and choice in the context of more standard care pathways. Therefore, we excluded studies with a focus on a specific risk factor or in relation to a specific intervention. Our search produced a good number of papers about both VBAC and planned caesarean section. We felt that these had more of a specific focus and decision-making contexts that warranted separate reviews in order to explore the themes and unpack the complexities related to each. Table  2 defines the inclusion and exclusion criteria that were used during screening.

Quality appraisal

Three reviewers (CY, CM and HC) independently carried out a quality assessment of the included studies using a tool [ 25 ] for qualitative research that was adapted from Walsh and Downe. [ 26 ] Initially, we intended to use CASP [ 27 ] for the qualitative research appraisal; however, this tool, though popular, was found to be less sensitive to validity than other critical appraisal tools for qualitative research. [ 28 ] We amended the tool by Rocca-Ihenacho during our quality appraisal, decreasing the number of items on the checklist and adding in a more nuanced scoring system. The resulting tool (Table  3 ) uses 33 items to appraise research on the basis of scope and purpose, methodology, research design, sampling strategy, data collection and analysis, interpretation of data, discussion of results, reflexivity and ethical considerations. Studies were scored from 0 to 2 for each item to denote the quality of each item and were given an overall quality rating (0–22 = low; 23–44 = moderate; 45–66 = high). In the few cases of uncertainty or disparity, the reviews outlined their rationale for scoring and came to an agreement based on this discussion.

Data extraction and synthesis

The first reviewer (CY) extracted data from the selected studies to assess quality and to synthesise reported results with supervision from the second reviewer (CM). No discrepancies were identified during this process. The extracted qualitative data was coded line-by-line in NVivo to enable the translations of concepts from one study to another and to build a qualitative synthesis, following Thomas and Harden’s [ 22 ] methodology. This approach enables the synthesis to ‘go beyond’ in order to identify key concepts in the studies and translate them into one another. The process of translation allows the recognition of similar concepts used within studies, even if they are not explicitly stated as such. The theories associated with these concepts are extracted so that a line of argument can be developed and concordant concepts can be put together, bringing fresh interpretations.

Search results

The searches identified 2198 records, and after screening both titles and abstracts, 88 were selected for full text review. One article known to the authors was added, bringing the total to 89 records. Of these, 47 were excluded for a number of reasons. The most common was because the study focused on an aspect of women’s experiences outside of decision-making about pregnancy and birth care, or there was little to no inclusion of decision-making or informed choice in the study aims or findings. From the remaining records, five were removed because they were scored as low-quality during the quality appraisal, leaving 37 records that were included in the meta-synthesis. Twenty-five were rated moderate quality, and 12 were of high quality. A majority of the studies included in the final review were peer-reviewed journal articles. One PhD dissertation [ 29 ] was included; however, the findings extracted from the text were done with care so that the extended format did not dominate the analysis or the emergent themes. The search results can be viewed in Fig.  1 .

Flow chart of results of the record identification, screening and quality appraisal for the review

Descriptive findings

All of the studies reported in the review were conducted in nine countries, the UK (17), the US (7), Canada (5), Australia (4), New Zealand (5), Finland (2), Denmark (1), the Netherlands (1) and Spain (1). Several of the articles included in the review reported on studies that were conducted in multiple countries, most notably Lagan et al. [ 30 ], which was undertaken in five countries. The range of countries included is small because the inclusion criteria was limited to research published in English, and to studies conducted in countries with comparable medical systems to the UK. Table  4 provides a summary overview of the included studies with their corresponding numbers.

While all of the research broadly focused on decision-making and informed choice, there was a range of study topics, methods, sample sizes and analytical frameworks used to investigate the aims. A majority of the research centred on place of birth. [ 29 , 31 , 32 , 33 , 34 , 35 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 47 , 49 , 53 , 54 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 ] Of these, 10 focused exclusively on home birth [ 31 , 33 , 34 , 35 , 40 , 49 , 53 , 57 , 60 , 61 ] and one on free birth. [ 41 ] The next most common study topics were decisions about birth [ 50 , 51 , 52 , 55 ] and influence of information sources [ 30 , 45 , 56 ]. Only two studies [ 2 , 48 ] were concerned with informed choice as a primary study aim, and, finally, three studies explored birth experiences [ 36 ], natural birth [ 44 ] and pain management. [ 46 ] Overall, place of birth research was disproportionally represented in the studies identified.

There was a variety of study designs employed in the research under review. Most [ 29 , 31 , 32 , 33 , 34 , 35 , 36 , 38 , 39 , 40 , 44 , 45 , 46 , 47 , 50 , 51 , 53 , 56 , 57 , 58 , 60 , 61 , 63 , 64 ] exclusively used interviews to collect data. Seven studies [ 30 , 33 , 42 , 43 , 54 , 59 , 62 ] gathered data using focus groups, and the rest used a combination of qualitative methods, usually interviews with either participant observation [ 49 , 52 ], non-participant observation [ 2 , 48 ], narratives [ 41 ] or focus groups. [ 55 ] Sample sizes ranged from four to 135 participants, although one study [ 2 ] did not report their sample size. The average study size among the records reviewed was approximately 32. Most of the studies [ 29 , 30 , 31 , 32 , 35 , 36 , 37 , 38 , 43 , 44 , 45 , 46 , 47 , 49 , 50 , 53 , 54 , 57 , 59 , 60 , 62 , 63 , 64 ] used thematic analysis to generate results, while the remaining studies employed either theory-guided analysis [ 39 , 41 , 48 , 51 , 56 , 57 , 61 ], qualitative content analysis [ 33 , 42 ], close textual analysis [ 40 , 52 ] or consensual qualitative research analysis [ 55 ]. Two papers did not state their analysis methods. [ 2 , 34 ]

The review included only two papers [ 32 , 57 ] that incorporated partners’ experiences of choosing place of birth, and, of these two, one [ 32 ] focused exclusively on fathers. There are also few ethnographic studies [ 49 , 52 ] of decision-making and informed choice in maternal health: most of the articles we reviewed employed either grounded theory [ 34 , 39 , 48 , 53 , 56 , 58 , 60 ], phenomenological [ 31 , 41 , 51 , 61 ] or narrative [ 37 , 38 , 44 ] approaches as study designs. In general, the reporting of theoretical and methodological aspects of research was not as frequent as expected; for example, only 18 of the 37 studies reviewed stated their methodological frameworks. Because decision-making and informed choices are not straightforward processes and are enmeshed in wider socio-cultural relationships, it is important to situate the qualitative methodology within social theory. Moreover, we found little anthropological or sociological research on decision-making in maternal health, despite a rich body of work already established on reproductive and maternity experiences, both in the US and UK (see Davis-Floyd and Kitzinger).

Synthesis findings

Informed by women and their partners’ accounts of their decision-making experiences and the descriptive level of analysis, three overarching analytical themes emerged – ‘Uncertainty’, ‘Bodily autonomy and integrity’ and ‘Performing good motherhood’. These core themes are interwoven and overlapping as they reinforce and feed back into each other, and certain aspects of one can be confluent with those of another. There are three inter-linking actions – ‘Information gathering’, ‘Aligning with a birth philosophy’ and ‘Balancing aspects of a choice’ – as decision-making is an active albeit abstract process. The themes and inter-linking actions are framed by a ‘Temporal dimension’ that provides multidimensional depth to the process of decision-making and concept of informed choice. Figure  2 provides a visual conceptual map of the synthesis findings. All quotes in the following discussion are from the texts and participants of the original studies under review.

Conceptual map of the synthesis findings, showing interaction of inter-linking actions, themes and temporal dimensions

Inter-linking actions

Information gathering.

This action illustrates the multiplicity of information-seeking and what women specifically gain from different sources. While women may seek information from sources outside of the medical sphere, this does not mean that they do not rely on information from HCPs, who are still seen as valuable providers, particularly as active rather than static sources:

“I have had the pamphlets that the midwife gave me but I feel that if there were anything I really wanted to know then I would ring the midwife--my own midwife at the surgery … it’s just that you can have a conversation about it...in a book it’s just written there, whereas you can discuss it when you are with the midwife.”[[ 48 ] p114].

Trust is a crucial strategy for navigating convoluted decisions, particularly trust in experts with the appropriate skills and knowledge. [ 65 , 66 ] As the participant above illustrated, the pamphlets from her midwife only provided so much, it was rather informal conversations that were more valued. Though HCPs are seen as trustworthy sources, women consistently reported looking for information, particularly for more detailed knowledge, outside of their appointments and beyond the ‘formal’ sources to family, friends and the Internet. These may provide a more comprehensive picture of care or specifics about different options, or be used to validate or confirm what HCPs have said:

Many wrote that they used the Internet to clarify information received from other sources—health professionals, family friends, or literature, such as pregnancy books and leaflets: “For me it was more to confirm what a doctor had said. Silly, I know, but I just wanted to understand it some more, which it helped me to do.”[[ 30 ] p342].

Other sources of information can also be personal experiences, and care choices may stem from this internal history, particularly when women come to trust themselves and their bodies, which is common among those who chose to home or free birth:

“I knew that with my second, I was searching for a greater depth to the experience, something more intuitive as I had come to trust myself more than I had previously, not just through experience, but through research that supported my beliefs in understanding the science behind mammalian instinct, physiological birth and the huge value of the hormonal and emotional process.”[[ 41 ] p7].

Information is a way to counteract uncertainty, whether it pertains to fear or safety, while simultaneously functioning as a space in which women perform good motherhood, gathering all the resources possible to demonstrate their knowledgeability and responsibility as a mother:

“I had a lot of fear around pain and what I considered to be this maiming experience of birth. I didn’t read anything for 9 months except birthing books, I swear. I mean, I just studied it. I knew it so well that the birthing classes suggested that I become a teacher. By the time I was in preparation for her birth, I had a lot of very, very positive expectations around the birth.”[[ 39 ] p27].

The woman above has not only used intensive research to overcome her uncertainty and dread but has also been socially bestowed as an expert who is so knowledgeable that she can teach a birthing class herself. Information gathering can be used to shift an emotional outlook, whether it be for better or worse, relieving or inducing uncertainty, and it can also function as a strategy to forge or strengthen trust in sources of knowledge and in the self, by confirming what a HCP has advised or empowering the belief that birth can be positive, rather than “maiming”.

Balancing aspects of a choice

The next inter-linking action is concerned with looking at how women consider the different options available to them and, essentially, weigh the advantages and disadvantages of those they encounter. There are different everyday strategies that women use to navigate the many care decisions, including comparing information about an option or actively assessing and managing the uncertainty that is associated with their choice. ‘Balancing aspects of a choice’ focuses on the decision itself, how it is considered in relation to the self and the external world and how this shaped the ultimate choice outcome:

“I knew I had the information I was looking for generally after searching a number of sites and comparing a number of sources of information and when I felt satisfied I had learnt all that I could on a particular topic. I also liked to compare / discuss what I had found on the Internet with other sources, such as my midwife, obstetrician, GP, textbooks, etc.”[[ 30 ] p341].

“I have heard, of course, of the possibility of giving birth in a birthing center, but I thought it was not appropriate for me, because I think that it suits women who are calm and confident better. Me, I have more of an anxious nature. As I reflected during the course of my pregnancy, I came to the conclusion … I am too able to imagine all the problems that could occur. It makes me feel safe to be in a hospital.” [[ 50 ] p163].

Balancing involves understanding and managing uncertainty, developing “safety nets” in the event of a complication during labour and childbirth. This phenomenon is not a recent one. McClain [ 67 , 68 ] found that women’s choices of birth services were based on balancing the risks and benefits of each option. Risk and benefit have thus remained strong vectors along which decisions are made against others; the central question being: what is the risk to my body and my baby?

“We just won’t let labour go on that long – if things aren’t progressing, we’ll ask for a caesarean section...I’ve done everything I can to be fit and healthy. I’ve done NCT [National Childbirth Trust] – very helpful apart from they’re a bit mad, and you have to take it with a pinch of salt. They are very pro- ‘active birth’ and anti-drug.”[[ 37 ] p61].

“So once I got past the anxiety issues, and making that final decision, and knowing that if I didn’t want to go ahead with it then I could always back out and still go to the hospital.”[[ 35 ] p125].

Women pursuing non-hospital births reported assessing and managing uncertainty regularly throughout their pregnancy, revealing the extent to which uncertainty is embodied and how bodily parameters orient decisions. Balancing the aspects of ‘alternative’ maternal care choices acquire legitimacy and potency as medical tests and clinical appointments confirm a ‘low-risk’ status, and optimal fitness, by these standards, is affirmed. So powerful are these biomedical definitions of health and risk that they determine pathways of care, even if it is generally outside its bounds and setting:

“I didn’t actually decide to have a homebirth until I had had my 28-week gestational diabetes test, because I had had a false positive with that, so then after I’d had my second test for that then I decided that yes, I wanted to go ahead and have a homebirth. I needed to have everything clear in my head that everything was going to be healthy for me to be able to have a homebirth.” [[ 35 ] p125].

Through this action, we can see how blended decision-making can be: it must encompass both physiological and social considerations, reflecting the dynamic nature of childbirth knowledge itself, which is comprised of biological processes and social praxis [ 69 ]. Balancing is an effective strategy for navigating these complex decisions and myriad information sources pertaining to them.

Aligning with a birth philosophy

In terms of decision-making, an important part of the process is aligning with a specific ‘birth philosophy’, or perspectives that inform the ways in which people understand the world and life in it, further shaping the information women access, the care opinions they ultimately choose and the ways they justify their choices. Birth philosophies, as they are presented in the literature reviewed, fall primarily into two camps; one views pregnancy and birth as ‘medical’ events, while the other sees each as ‘natural’ events. Many women’s perspectives reflect the medicalisation of childbirth in Western countries and as a result, they entrust their bodies, which can viewed as sites of danger, to medical care:

“I had a couple of people going ‘oh but it’s all just a natural process and it’s all good and you should be all fine’; well actually if you look around the world most of the women die in childbirth, that’s the riskiest thing women do; I wasn’t terribly impressed with that argument.”[[ 42 ] p10].

“I mean, it’s a medical thing. I’m not going to stay home if my appendix bursts either. I want the people who are trained and know what they’re doing to deliver my baby. Why wouldn’t you go to the hospital? That’s crazy!”[[ 52 ] p712].

Through this lens, placing one’s self anywhere but in a hospital and into medical care is “crazy”; however, women who see pregnancy as a natural event view ‘alternative’ options as opportunities to maintain their physical agency. These women often evoke the histories of women who have given birth outside of the hospital and the desire not to interfere with their bodies’ physiological processes. They do not conceive of their bodies as sites of danger, rather as those undergoing an organic event, and that care should indicate this:

“For me, pregnancy is a totally natural thing. If one is in good shape, in good health, there is no reason why one should go to the hospital to have access to medical help. Yes, things can go wrong, and this is why it reassured me to know that midwives are paired up with the hospital … But if things go well, I have no reason to ask for a doctor’s help.”[[ 45 ] p163].

“I think [TMH]- it’s a hospital, which if you are sick or if you’ve had an accident, that’s great, that’s exactly what you want; but I wasn’t sick, I was having a baby – it’s a perfectly natural process that millions of women all around the world have managed to do without nice shiny hospitals”[[ 43 ]p600].

The insinuation that giving birth outside of the hospital is right for – if not, limited to – women who are in “good shape” and “good health” reveals the overwhelming burden of risk discourse in maternal health. Despite this crossover between the ideological camps, there were indications in this review of emerging perspectives that allow each to dovetail, but increasingly underscore the importance of individualised choice as a way to display and promote appropriate motherhood and maternal care:

“For me a birth is natural when I can keep the child close to me and do what I feel right in the process, whether I will use technologies or I won’t. First and foremost the natural in birth means my choice and my decisions. If I feel that an intervention is necessary it is not against the idea of a natural birth, nor is the use of medicine.”[[ 45 ] p163].

Engaging with, forming and embracing a birth philosophy are all important steps along the decision-making process and contribute to a woman’s ability to make an informed choice about her care; however, it is essential that these ‘ideologies’ or ‘philosophies’ are critically examined. Each ideology contains slippages, and their co-existence can still be regarded as contentious, yet they are repeatedly spoken of in decision-making about maternity care and remain integral to this process.

Analytical themes

Uncertainty.

‘Uncertainty’, along with the following two analytical themes, encompasses several different experiences that are related to mothers’ concerns about the unknown and the course of pregnancy, childbirth and maternity care, all of which shape women’s decision-making and the options they ultimately pursue. Uncertainty about the unknowns of pregnancy and childbirth is most prominent among first-time mothers, who do not have previous experience to inform their choices and may approach care with a level of wariness:

“You don’t know how painful it is going to be, it’s the fear of the unexpected.”[[ 46 ] p3].

“The birthing center, I knew it existed, but I didn’t really know. But for a first baby I felt safer at the hospital, because they have all the technology, and if there are problems … I am already at the right place. So, the fear of the unknown, I’d rather be in a place where I know that everything is readily available.”[[ 45 ] p163].

Anxiety about having a straightforward pregnancy and birth, fear of pain, and lack of experiential knowledge contribute to women opting for what is viewed to be the safest pathway of care, using what is perceivably less risky to guide their decisions. Uncertainty, which encompasses risk, safety and fear, was frequently cited as an influence on decision-making, regardless of parity. Fear, such as fear of pain, can be a powerful motivator for choosing a specific place of birth:

“Well, of course I am gonna go in and have an epidural, because that’s what the hospital is there for. And of course I am going to take whatever is – I don’t want to handle pain, I’m scared of pain, so I’m definitely going to do it the easy way.”[[ 50 ] p644].

Fear of pain is not the only anxiety that mothers experience; some women expressed uncertainty about the safety of the hospital environment, which directed their pregnancy and birth care decisions. Safety and risk are constructed in several different ways in these cases. For some, medical technology, interventions and environments connote safety, security and quality care, while for other, these are view as inherently risky, down to the microscopic level of “germs”:

“You come out of the hospital and you feel like you are covered in germs and you just wanna have a shower and change your clothes so why would I wanna take a newborn who doesn’t have any kind of antibodies in their system yet into a hospital? It didn’t make logical sense to me.”[[ 53 ] p579].

“That CTG or that doptone is also based on fear. Yes, then you trust the machine more than what I tell you about how it’s going, or your own intuition. And I understand that you think, as a midwife, you don’t want to be sued, and you don’t want a dead child, and you feel responsible. I understand all that. But it takes away my control over my delivery and my body and what I want.”[[ 50 ] p7].

“So, I went on a hospital tour and I said to myself ‘I don’t feel safe here,’ anyone can come in and out and I’m not in control.”[[ 49 ] p270].

Fear, risk and safety appear to be part and parcel of uncertainty. Fear about childbirth is strongly connected to the unknown, whether it concerns pain levels, interventions or entire approaches to maternity care, as opposed to concrete calculations of risk, displaying how uncertainty is remains enmeshed with ‘being in control’.

Bodily autonomy and integrity

Control, and how it is linked to choice, is a topic widely covered in reproductive and maternal health research. Women frequently discuss their maternity experiences in terms of control, whether it be losing it, maintaining it or reclaiming it. We chose to shift the perspective to bodily autonomy and integrity because ‘control’ is not always explicitly stated by participants, and experiences often refer back to the body. This theme, as with the others, is multifaceted, encompassing a range of experiences. First. the denial of bodily autonomy is commonly coded as “loss of control” by researchers:

“[Y] ou can be in whatever position you want, you can have whatever doctor you want, but then the nurses come in and they tell you to do this, so you do it” (Shirley). Andrea also noted, ‘During prenatal classes, they had shown us some labor positions to try and stuff, but [in hospital] they were like, ‘Oh, just try and rest. Lie down.’“[[ 50 ] p645].

“I felt violated and humiliated. It ended up with the doctor telling me my baby was stuck and she would try to pull my baby out, in theatre, with an epidural, surrounded by strangers, in case it didn’t work in which case they would perform an emergency c-section. It was the most awful experience of my life.”[[ 41 ] p5].

Experiences in this category may be quite subtle, such as threats of induction or discussions that aim to limit women’s decisions about their bodies and care, to more transparent, like being forced to lie down, too traumatic, in which women are left feeling “violated”. During these experiences, women’s control over their care is restricted or removed completely, and this is embodied through the type of care received and the way it is received. Some women seek to protect this autonomy and integrity through their care decisions:

“… you’ve got control over your environment, you can decide what position you’re in, whether you need something to eat or a bath or a scented candle or, you know, you might want none of those things, you might have time for none of those things … And being somewhere that is familiar and safe and happy and that is not intruded on by other people and their various dramas, positive or negative. And where you can control the cleanliness and the food and anything else, and you can go to your own bed afterwards and … yes. It just feels to me some … more comfortable.”[[ 37 ] p62].

“When I contacted the midwife, I had not decided for a home birth yet, I contacted her because I wanted to have a respectful birth, without epidural analgesia, and I wanted a person who respected that. I knew that I was not going to find a healthcare professional who respected me in this way [at the hospital] …” [[ 61 ] p19].

The review outcomes, which included 10 studies of home births and one of free birth, suggest that birthing outside of the hospital is a common route women take if they are concerned with control over their bodies and agency in their care. Pursuing home birth, in which limited medicalisation is ideal, can be viewed as a choice that is informed by and reflects women’s desires for autonomy and integrity, and those who choose this type of care often centre their motivations around their bodies.

Performing good motherhood

The final analytical theme is ‘performing good motherhood’ and is related to responsibility and risk, which are often ascribed to mothers to manage. [ 37 ] This theme revealed a pervasive, gendered cultural norm that ‘good’ motherhood and birth takes place in a hospital with a team of medical professionals. It may be one of the reasons why women planning home births often describe thorough information gathering and risk assessments, and speak about negotiating their care within the purview of biomedicine:

She [participant] used biomedical knowledge to support her view that birth can safely be conducted at home when risks have been excluded by prenatal care. For this purpose she and her husband had searched medical databases to find research on home births. To secure her own low-risk status she had extra examinations done during her pregnancy. She organised her home birth to represent conditions in the hospital as far as she could.[[ 57 ] p1117].

Re-creating the home to mimic a hospital reinforces the authoritative position of the medical system and the norm that maternity optimally takes place within it, while simultaneously demonstrating this woman’s responsibility as a mother, despite her decision to birth outside of this system. However, opting for hospital-based and more medicalised care remains the ultimate act of risk management, and, for women choosing these, risk may be spoken of in terms of danger and death, each seen as possibilities in the spaces outside of it:

“I said, ‘Look, don’t worry, I’m not going anywhere there’s no doctors.’ And he [GP] said, ‘Yes, I’m just saying, you know, because you know the chances are … It’s a 40 minute journey [referring to transfer to OU during labour]. Do you want to risk that?’ No! [Laughs] But yeah, that’s all he really said, but he was right … I’m not risking that, I’m not risking the baby’s life or my life.” [[ 37 ] p58].

“Why would I want to put my baby in danger? What if something went wrong?”[[ 52 ] p712].

Within biomedicine and wider social discourses, pregnancy is constructed as a time of risk and its reduction [ 70 ], and childbirth, subsequently, an event that requires not only hospitalisation but also one that acquires a moral subtext, making it difficult for parents choosing different care to escape blame and stigmatisation [ 71 ], and adding a ‘burden’ of choice onto women:

I made an early decision to go to hospital to give birth, even though my midwives here were extremely experienced. And I did talk through that with [my midwife] and say that possibly I might decide not to go to the hospital if everything started very quickly … Yes and I wanted that to happen and for the decision to be taken away from me. I craved a home birth, but ‘my niggles of fear’ wouldn’t let me take the risk. An alarm bell goes off in the back of my head that says but what if something happens? … And my midwife said that if you have it in your head (that you don’t feel safe) then it is going to get in the way of the labour taking place and that you need to be in the place where you are going to birth and then it will just happen.[[ 63 ] p52].

Coxon and colleagues [ 37 ] argue that discourses of responsibility continue to constrain women’s decisions and the way they discuss birth options outside of the norm, and many of women’s reported decision-making experiences uphold this idea.

Temporal dimension of decision-making and informed choice

There are several levels in which temporality underpins decision-making and informed choices about maternity care during pregnancy and for birth. On the most immediate level rests a continuum from ‘early pregnancy’ to ‘late pregnancy’, during which options are considered, information gathered and decisions are made. There is not necessarily a pattern of when decisions about maternity care are made along this continuum, and there may not be specific decisions points along it, but rather decisions can build or shift over time. On the other hand, significant influences, such as attending a friend’s home birth early in pregnancy, can provide a more concrete time stamp for a decision shift along this continuum:

“I had a powerful experience when I was early on [in my pregnancy]. It was home birth of my friend’s...I think for me, deciding to go with home birth had somewhat to do with being there at a home birth...That seems worthwhile: I want to be a part of that. I want that. And so early on, we made that decision.”[[ 55 ] p175].

“[F] rom the beginning I knew [hospital birth] was the course of events”[[ 47 ] p47].

“Just wanted to leave the window open, because I liked the idea of doing it but I wasn’t completely ready to make that decision, and I think as I got further along in my pregnancy, it was easier for me to make that decision.”[[ 35 ] p125].

The next level within this temporal dimension of decision-making is constituted from past personal experiences, which encompass before pregnancy, previous birth(s), significant life events and family experiences of the recent past. Like the themes of maintaining bodily integrity, managing uncertainty, and performing good motherhood, it also has the potential to be a highly emotional layer, where memories of trauma or loss reside and shape how decision-making is approached and which care options women and their partners take seriously:

“I don’t want it to go like it went last time. I had quite a traumatic first birth and I had basically a series of events happened and I felt that I had lost control and I hadn’t been informed properly when I was in labour. So, things kind of went out of control. This time round I’m, I’m planning to be at home because that gives me an element of control that I didn’t feel that I had when I was in hospital.”[[ 46 ] p6].

“My brother had … well his wife had a baby at home and the baby died … and I think that affects … that sort of affects the family for a long time, you know, anyone in the family who was involved with that or remembers that, you can’t, [home birth is] just a no-no for us.”[[ 37 ] p59].

The deepest layer of this temporal dimension of decision-making is the historic past, which often is embedded within women’s perspectives of birth and their decision-making processes. The ‘past’ or ‘old days’ are often used to justify a decision, particularly when it comes to place of birth. This justification occurs along two lines: either it is connected with traditional birthing practices, inherent biological drives or mammalian physiology to strengthen the choice to home or free birth, or it is connected with historical maternal and infant mortality rates to make a case for hospital birth:

“I accepted that like any other mammal, I can give birth so the implicit trust I have in my biology played a fundamental role in this acceptance of birthing alone.”[[ 41 ] p8].

“I just know that bad things can happen, like to the baby’s blood or heartbeat or whatever. Birth is really dangerous and women used to die all the time before hospitals, and I guess they still do in poor countries and all that.”[[ 52 ] p712].

In conceptualising temporality, it is easy to present it linearly, reflecting how individuals move forward in time, which is not necessarily the case for a cognitive process like decision-making. Instead, women may shift between or draw from different temporal modes when they working through and making a decision.

Though all of the studies we review concerned decision-making and choice, few focused primarily on the process of decision-making, as opposed to the influences on it or placed informed choice as a primary research aim. This could be attributed to the artefact of the research methods used, but this limited focus means that clarifying maternal health decision-making is tenuous at times and tracing the development of informed choice in literature published since 1990 is difficult. In their analyses, many of the review sources failed to surface deeper themes within this vein, leaving questions about what we are missing when we talk about women’s decision-making in relation to birth, for instance how social and institutional power might come to be embodied through decisions about care. Ultimately, we found that decision-making is not only dynamic but also a temporal process, in that it is made within a defined period and invokes the past, whether this is personal, familial, social or historical. However, few of the papers reviewed explicitly explored timing of decisions; instead, time was discussed within reported influences on choice.

Different decision-making strategies intersect over the course of pregnancy, how information is collected and scrutinised and how options are weighed within different boundaries. Feelings of satisfaction, anxiety and safety are used as an inner guide for making a decision, demonstrating the extent to which emotional and bodily well-being are considered when choosing significant care options, such as birth setting. Triangulating information about pregnancy and care is common, given the scope of resources available; however, the act of confirming suggests that relationships of trust can still be difficult to manage with the overwhelming sense of risk attached to maternal health.

Within motherhood, there can be a multitude of experiences, narratives and identities that, like information seeking and relationships with choice, are constantly unfolding and in flux, within a dynamic decision-making field of maternity history, uncertainty, birth ideology and care options. Aligning with a birth philosophy, whether consciously or not, is a crucial component of decision making. Generally, birth philosophy is pushed, by researchers and parents alike, into two fundamental camps, in which pregnancy and birth are treated either as a medical event or a natural event. This dichotomy is consistently generated and reproduced within pregnancy and birth discourse, rhetoric and research, reinforcing a binary tendency in analysis that does not realistically reflect the ways women consider maternity. The ‘natural event’ ideology features predominantly in this review because nearly a third of the included studies focused on home birth or free birth exclusively, and this may not be representative of the wider population; however, focused research into non-hospital birth is unsurprising, as this type of decision-making is more ‘visible’ as a process because it is not normative. The ‘medical event’ ideology remains the authoritative narrative of pregnancy and birth, evidenced by women seeking care outside of the norm still rely on biomedical sanctions to do so, and by the fact that many births in Western countries take place in hospital settings.

This review further highlights the importance of the body in maternal health. Embodiment underpins women’s pregnancies and births [ 19 ], reflecting the liminality of these events, even if it is not explicitly discussed. Embodied experiences are central to maternity, evidenced by the importance mothers place on bodily autonomy and integrity, and how indicative emotions are within this. Anthropologists have suggested that emotions affect how the body is experienced, and are connected to images of well or poorly functioning social bodies [ 72 ]. Good motherhood continues to be heavily associated with concepts of the appropriate maternal body. Research has previously suggested that a fit, pregnant (or post-pregnancy) body is idealised and celebrated, and thus can be seen as a mark of responsible, good motherhood. We would extend this further to include a good maternal body is one that is safe and informed as well as fit. A maternal body out of control, uninformed or medically unregulated induces uncertainty, anxiety, judgement and, to a certain extent, distrust, and this, in turn, shapes decision-making about care. The inter-linking actions highlighted in our review may shift emotional and ideological views of pregnancy and birth, and help individuals to calibrate care options to themselves, their families and their environment. These considerations, strategies and actions are all mediated through the maternal body, meaning that they should be considered as embodied .

Thus, an informed choice in a maternity care context is one that takes into account all the information gathered and is aligned with a woman’s birth philosophy, the aspects of which have been balanced against those of the other options. However, it is moderated by desires to maintain bodily autonomy and integrity, discourses of uncertainty and motherhood performativity, framed temporally and embedded in emotional and spatial considerations. From the research reviewed, it can be hard to pin down to what extent women regularly make informed choices about their care; however, the instances of it are relatively clear when they are articulated, and this is often by women who choose home or free birth. They appear more likely to consider multiple options, opting for those that are deeply connected to their values and their bodies, and research extensively. This may be indicative of medical systems constructed to support one pathway of care, but there is no reason a woman receiving pregnancy care and giving birth in a more normalised settings should not be facilitated to have similar decision-making experiences. In researching women who choose hospital or more medicalised care, their relationships with choice are key to unpacking whether or not their choices are informed, according to public health policy. Our conceptualisation of informed choice is one of many put forward since it became a buzzword in public health, yet it remains the case that, given the persistent power imbalances in biomedicine, it will continue to be defined by policymakers and HCPs. It may, in fact, be that women “are exposed to frameworks of choice rather than being explicitly able to formulate their own choices”. [[ 73 ] p414] If this is the case, then researchers need to interrogate the possibilities for making informed choices in such a framework.

Limitations and further research

The meta-synthesis procedure provides an excellent guide for making sense of qualitative literature and concepts, but it may require a balancing act of what to include and what to exclude, revealing the inherent subjectivity of qualitative methodologies and the importance of reflexivity and transparency concerning how and why choices were made. Our meta-synthesis reviewed 37 sources, which, by some standards, may be considered too large and, therefore, a limitation. There are no strict recommendations on the size of a review; however, researchers should be aware that the framework may be better suited for smaller reviews, given the analysis and synthesis stages. We did consider curtailing the focus of this review to decision-making and informed choice about place of birth, but, ultimately, we felt that our analysis and discussion would benefit from a wider scope, as the findings would be useful for a broader audience in maternal health research.

In conducting this review, we identified three areas for further research. First, more research is needed on decision-making and informed choice among fathers and non-pregnant partners, as there is currently very little. Existing studies suggests that partners feel disembodied from pregnancy and vulnerable during labour and birth [ 74 , 75 ], and that they do take active roles in defending women’s choices and preparing for birth [ 76 ], showing the need for the development of an evidence base to enhance support and inclusion. Second, future research should prioritise generating findings from a wider European context, which would provide a better picture of women’s experiences in these countries and how they are linked to the health care systems. Much of the research reviewed was based in the UK or USA, and the few studies from Denmark, Finland and Spain provided fresh insights into the national maternity services and decision-making realities within them. Finally, given the limited acknowledgement of the body in the studies reviewed and the dearth of qualitative research on maternal health incorporating theories of embodiment in general [ 77 ], future studies on decision-making and informed choice in these contexts should consider this dimension as a key theoretical starting point.

Implications for policy and practice

Our review demonstrates the need for a reconceptualisation of decision-making and informed choice as it concerns maternity care. Attempting to bridge policy and practice gaps through choice is common in maternity care, but there is often limited reflection on our own assumptions about the fundamental nature of making one, or what constitutes informed choice. Historically, women’s choices have been constrained, particularly concerning their livelihoods, and we should be mindful of how gender and hierarchy are iterated by contemporary frameworks of choice, such as through the performance of good motherhood. There is little consideration of the embodied dimensions of pregnancy, birth and decision-making experiences in classical theories of choice, or cyclical notions of temporality in current decision-making models, such as SDM. Reid et al. [ 17 ] similarly found the framework for women’s decision-making processes about antenatal screening generated from their meta-synthesis was not fully congruent with existing theoretical frameworks. Our synthesis highlights informed choice as layered within a multidimensional process of decision-making, which may not be straightforwardly achieved through enshrinement in policy alone.

Our findings indicate that health systems should more actively incorporate flexibility and fluidity into practice, which was highlighted by several of the studies reviewed, but this may conflict with rigid structures for care. Maternal health experiences are highly personal, and there is need for care systems that are flexible enough to accommodate them. However, hospital care has been compared to an industrial factory, in which labour care resembles an assembly line [ 78 , 79 ], and further research suggests that funnelling through specific care is still occurring. [ 80 , 81 , 82 ] Inflexible information provision and care pathways may account for why women continue to rely on social and familial networks and different media for support. They provide opportunities to acquire key maternity knowledge but also leave space for personalisation, in that women are free to engage with information when and as they choose. Decisions about care do not always take place at fixed points in time, and this must be considered within any maternity choice framework.

In thinking of solutions, it is more important than ever to embrace emergent models in maternity, like midwifery-led care, continuity of carer or group antenatal care [ 83 ], which support more fluid decision-making, break down dichotomies and facilitate the social network effect [ 84 , 85 ]. However, given the slow development of these models in health systems and comparatively low uptake of ‘alternative’ options among women, even in countries with strong policy and midwifery integration [ 86 ], there is still significant work to be done on normalising these pathways. HCPs, given their trusted expertise, hold a unique position, allowing them to spearhead change in maternity care, beginning by shifting narratives of safety and risk. Women are often concerned with uncertainty in pregnancy, labour and birth when making a decision, so effectively and transparently communicating about risk and safety in different care settings will be crucial in promoting and legitimising emergent models. Placing more trust and respect, especially trusting women’s experiences and respecting their bodily autonomy and integrity, in care giving and receiving will also help to make strides in restructuring not only the services, but the way we think about relationships within them.

This is the first systematic review to take a wider maternity context into consideration in order to elucidate decision-making and informed choice about pregnancy and birth care. Building on the critical reinterpretation of the included studies, we developed a conceptual synthesis, which was consistent with the findings of these but also extended beyond them. Most of the studies reviewed here were of moderate to high quality, and there has been an increasing focus on decision-making and informed choice, particularly in regards to place of birth, in the literature since the 2010s, a trend that is likely to continue, as choice remains prominent in public health policymaking. In light of this review, we urge researchers, practitioners and policymakers to take the embodied experience of pregnancy and birth and dynamic processes of decision-making into account when forming care pathways and tackling informed choice therein.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Critical Appraisal Skills Programme

Health care professional

National Health Service

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

International prospective register of systematic reviews

Randomised controlled trial

Shared decision-making

United Kingdom

United States of America

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Yuill, C., McCourt, C., Cheyne, H. et al. Women’s experiences of decision-making and informed choice about pregnancy and birth care: a systematic review and meta-synthesis of qualitative research. BMC Pregnancy Childbirth 20 , 343 (2020). https://doi.org/10.1186/s12884-020-03023-6

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Qualitative Research in Healthcare: Necessity and Characteristics

1 Department of Preventive Medicine, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Korea

2 Ulsan Metropolitan City Public Health Policy’s Institute, Ulsan, Korea

3 Department of Nursing, Chung-Ang University, Seoul, Korea

Eun Young Choi

4 College of Nursing, Sungshin Women’s University, Seoul, Korea

Seung Gyeong Jang

5 Department of Preventive Medicine, University of Ulsan College of Medicine, Seoul, Korea

Quantitative and qualitative research explore various social phenomena using different methods. However, there has been a tendency to treat quantitative studies using complicated statistical techniques as more scientific and superior, whereas relatively few qualitative studies have been conducted in the medical and healthcare fields. This review aimed to provide a proper understanding of qualitative research. This review examined the characteristics of quantitative and qualitative research to help researchers select the appropriate qualitative research methodology. Qualitative research is applicable in following cases: (1) when an exploratory approach is required on a topic that is not well known, (2) when something cannot be explained fully with quantitative research, (3) when it is necessary to newly present a specific view on a research topic that is difficult to explain with existing views, (4) when it is inappropriate to present the rationale or theoretical proposition for designing hypotheses, as in quantitative research, and (5) when conducting research that requires detailed descriptive writing with literary expressions. Qualitative research is conducted in the following order: (1) selection of a research topic and question, (2) selection of a theoretical framework and methods, (3) literature analysis, (4) selection of the research participants and data collection methods, (5) data analysis and description of findings, and (6) research validation. This review can contribute to the more active use of qualitative research in healthcare, and the findings are expected to instill a proper understanding of qualitative research in researchers who review qualitative research reports and papers.

Graphical abstract

INTRODUCTION

The definition of research varies among studies and scholars, and it is difficult to devise a single definition. The Oxford English Dictionary defines research as “a careful study of a subject, especially in order to discover new facts or information about it” [ 1 ], while Webster’s Dictionary defines research as “studious inquiry or examination - especially: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws” [ 2 ]. Moreover, research is broadly defined as the process of solving unsolved problems to broaden human knowledge [ 3 ]. A more thorough understanding of research can be gained by examining its types and reasons for conducting it.

The reasons for conducting research may include practical goals, such as degree attainment, job promotion, and financial profit. Research may be based on one’s own academic curiosity or aspiration or guided by professors or other supervisors. Academic research aims can be further divided into the following: (1) accurately describing an object or phenomenon, (2) identifying general laws and establishing well-designed theories for understanding and explaining a certain phenomenon, (3) predicting future events based on laws and theories, and (4) manipulating causes and conditions to induce or prevent a phenomenon [ 3 ].

The appropriate type of research must be selected based on the purpose and topic. Basic research has the primary purpose of expanding the existing knowledge base through new discoveries, while applied research aims to solve a real problem. Descriptive research attempts to factually present comparisons and interpretations of findings based on analyses of the characteristics, progression, or relationships of a certain phenomenon by manipulating the variables or controlling the conditions. Experimental or analytical research attempts to identify causal relationships between variables through experiments by arbitrarily manipulating the variables or controlling the conditions [ 3 ]. In addition, research can be quantitative or qualitative, depending on the data collection and analytical methods. Quantitative research relies on statistical analyses of quantitative data obtained primarily through investigation and experiment, while qualitative research uses specific methodologies to analyze qualitative data obtained through participant observations and in-depth interviews. However, as these types of research are not polar opposites and the criteria for classifying research types are unclear, there is some degree of methodological overlap.

What is more important than differentiating types of research is identifying the appropriate type of research to gain a better understanding of specific questions and improve problems encountered by people in life. An appropriate research type or methodology is essential to apply findings reliably. However, quantitative research based on the philosophical ideas of empiricism and positivism has been the mainstay in the field of healthcare, with academic advancement achieved through the application of various statistical techniques to quantitative data [ 4 ]. In particular, there has been a tendency to treat complicated statistical techniques as more scientific and superior, with few qualitative studies in not only clinical medicine, but also primary care and social medicine, which are relatively strongly influenced by the social sciences [ 5 , 6 ].

Quantitative and qualitative research use different ways of exploring various social phenomena. Both research methodologies can be applied individually or in combination based on the research topic, with mixed quantitative and qualitative research methodologies becoming more widespread in recent years [ 7 ]. Applying these 2 methods through a virtuous cycle of integration from a complementary perspective can provide a more accurate understanding of human phenomena and solutions to real-world problems.

This review aimed to provide a proper understanding of qualitative research to assist researchers in selecting the appropriate research methodology. Specifically, this review examined the characteristics of quantitative and qualitative research, the applicability of qualitative research, and the data sources collected and analyzed in qualitative research.

COMPARISON OF QUALITATIVE AND QUANTITATIVE RESEARCH

A clearer understanding of qualitative research can be obtained by comparing qualitative and quantitative research, with which people are generally familiar [ 8 , 9 ]. Quantitative research focuses on testing the validity of hypotheses established by the researcher to identify the causal relationships of a specific phenomenon and discovering laws to predict that phenomenon ( Table 1 ). Therefore, it emphasizes controlling the influence of variables that may interfere with the process of identifying causality and laws. In contrast, qualitative research aims to discover and explore new hypotheses or theories based on a deep understanding of the meaning of a specific phenomenon. As such, qualitative research attempts to accept various environmental factors naturally. In quantitative research, importance is placed on the researcher acting as an outsider to take an objective view by keeping a certain distance from the research subject. In contrast, qualitative research encourages looking inside the research subjects to understand them deeply, while also emphasizing the need for researchers to take an intersubjective view that is formed and shared based on a mutual understanding with the research subjects.

Comparison of methodological characteristics between quantitative research and qualitative research

The data used in quantitative research can be expressed as numerical values, and data accumulated through questionnaire surveys and tests are often used in analyses. In contrast, qualitative research uses narrative data with words and images collected through participant observations, in-depth interviews, and focus group discussions used in the analyses. Quantitative research data are measured repeatedly to enhance their reliability, while the analyses of such data focus on superficial aspects of the phenomenon of interest. Qualitative research instead focuses on obtaining deep and rich data and aims to identify the specific contents, dynamics, and processes inherent within the phenomenon and situation.

There are clear distinctions in the advantages, disadvantages, and goals of quantitative and qualitative research. On one hand, quantitative research has the advantages of reliability and generalizability of the findings, and advances in data collection and analysis methods have increased reliability and generalizability. However, quantitative research presents difficulties with an in-depth analysis of dynamic phenomena that cannot be expressed by numbers alone and interpreting the results analyzed in terms numbers. On the other hand, qualitative research has the advantage of validity, which refers to how accurately or appropriately a phenomenon was measured. However, qualitative research also has the disadvantage of weak generalizability, which determines whether an observed phenomenon applies to other cases.

APPLICATIONS OF QUALITATIVE RESEARCH AND ITS USEFULNESS IN THE HEALTHCARE FIELD

Qualitative research cannot be the solution to all problems. A specific methodology should not be applied to all situations. Therefore, researchers need to have a good understanding of the applicability of qualitative research. Generally, qualitative research is applicable in following cases: (1) when an exploratory approach is required on a topic that is not well known, (2) when something cannot be explained fully with quantitative research, (3) when it is necessary to newly present a specific view on a research topic that is difficult to explain with existing views, (4) when it is inappropriate to present the rationale or theoretical proposition for designing hypotheses, as in quantitative research, and (5) when conducting research that requires detailed descriptive writing with literary expressions [ 7 ]. In particular, qualitative research is useful for opening new fields of research, such as important topics that have not been previously examined or whose significance has not been recognized. Moreover, qualitative research is advantageous for examining known topics from a fresh perspective.

In the healthcare field, qualitative research is conducted on various topics considering its characteristics and strengths. Quantitative research, which focuses on hypothesis validation, such as the superiority of specific treatments or the effectiveness of specific policies, and the generalization of findings, has been the primary research methodology in the field of healthcare. Qualitative research has been mostly applied for studies such as subjective disease experiences and attitudes with respect to health-related patient quality of life [ 10 - 12 ], experiences and perceptions regarding the use of healthcare services [ 13 - 15 ], and assessments of the quality of care [ 16 , 17 ]. Moreover, qualitative research has focused on vulnerable populations, such as the elderly, children, disabled [ 18 - 20 ], minorities, and socially underprivileged with specific experiences [ 21 , 22 ].

For instance, patient safety is considered a pillar of quality of care, which is an aspect of healthcare with increasing international interest. The ultimate goal of patient safety research should be the improvement of patient safety, for which it is necessary to identify the root causes of potential errors and adverse events. In such cases, qualitative rather than quantitative research is often required. It is also important to identify whether there are any barriers when applying measures for enhancing patient safety to clinical practice. To identify such barriers, qualitative research is necessary to observe healthcare workers directly applying the solutions step-by-step during each process, determine whether there are difficulties in applying the solutions to relevant stakeholders, and ask how to improve the process if there are difficulties.

Patient safety is a very broad topic, and patient safety issues could be categorized into preventing, recognizing, and responding to patient safety issues based on related metrics [ 23 ]. Responding to issues that pertain to the handling of patient safety incidents that have already occurred has received relatively less interest than other categories of research on this topic, particularly in Korea. Until 2017, almost no research was conducted on the experiences of and difficulties faced by patients and healthcare workers who have been involved in patient safety incidents. This topic can be investigated using qualitative research.

A study in Korea investigated the physical and mental suffering experienced during the process of accepting disability and medical litigation by a patient who became disabled due to medical malpractice [ 21 ]. Another qualitative case study was conducted with participants who lost a family member due to a medical accident and identified psychological suffering due to the incident, as well as secondary psychological suffering during the medical litigation process, which increased the expandability of qualitative research findings [ 24 ]. A quantitative study based on these findings confirmed that people who experienced patient safety incidents had negative responses after the incidents and a high likelihood of sleep or eating disorders, depending on their responses [ 25 ].

A study that applied the grounded theory to examine the second victim phenomenon, referring to healthcare workers who have experienced patient safety incidents, and presented the response stages experienced by second victims demonstrated the strength of qualitative research [ 26 ]. Subsequently, other studies used questionnaire surveys on physicians and nurses to quantify the physical, mental, and work-related difficulties experienced by second victims [ 27 , 28 ]. As such, qualitative research alone can produce significant findings; however, combining quantitative and qualitative research produces a synergistic effect. In the healthcare field, which remains unfamiliar with qualitative research, combining these 2 methodologies could both enhance the validity of research findings and facilitate open discussions with other researchers [ 29 ].

In addition, qualitative research has been used for diverse sub-topics, including the experiences of patients and guardians with respect to various diseases (such as cancer, myocardial infarction, chronic obstructive pulmonary disease, depression, falls, and dementia), awareness of treatment for diabetes and hypertension, the experiences of physicians and nurses when they come in contact with medical staff, awareness of community health environments, experiences of medical service utilization by the general public in medically vulnerable areas, the general public’s awareness of vaccination policies, the health issues of people with special types of employment (such as delivery and call center workers), and the unmet healthcare needs of persons with vision or hearing impairment.

GENERAL WORKFLOW OF QUALITATIVE RESEARCH

Rather than focusing on deriving objective information, qualitative research aims to discern the quality of a specific phenomenon, obtaining answers to “why” and “how” questions. Qualitative research aims to collect data multi-dimensionally and provide in-depth explanations of the phenomenon being researched. Ultimately, the purpose of qualitative research is set to help researchers gain an understanding of the research topic and reveal the implications of the research findings. Therefore, qualitative research is generally conducted in the following order: (1) selection of a research topic and question, (2) selection of a theoretical framework and methods, (3) literature analysis, (4) selection of the research participants (or participation target) and data collection methods, (5) data analysis and description of findings, and (6) research validation ( Figure 1 ) [ 30 ]. However, unlike quantitative research, in which hypothesis setting and testing take place unidirectionally, a major characteristic of qualitative research is that the process is reversible and research methods can be modified. In other words, the research topic and question could change during the literature analysis process, and theoretical and analytical methods could change during the data collection process.

General workflow of qualitative research.

Selection of a Research Topic and Question

As with any research, the first step in qualitative research is the selection of a research topic and question. Qualitative researchers can select a research topic based on their interests from daily life as a researcher, their interests in issues within the healthcare field, and ideas from the literature, such as academic journals. The research question represents a more specific aspect of the research topic. Before specifically starting to conduct research based on a research topic, the researcher should clarify what is being researched and determine what research would be desirable. When selecting a research topic and question, the research should ask: is the research executable, are the research topic and question worth researching, and is this a research question that a researcher would want to research?

Selection of Theoretical Framework and Methods

A theoretical framework refers to the thoughts or attitudes that a researcher has about the phenomenon being researched. Selecting the theoretical framework first could help qualitative researchers not only in selecting the research purpose and problem, but also in carrying out various processes, including an exploration of the precedent literature and research, selection of the data type to be collected, data analysis, and description of findings. In qualitative research, theoretical frameworks are based on philosophical ideas, which affect the selection of specific qualitative research methods. Representative qualitative research methods include the grounded theory, which is suitable for achieving the goal of developing a theory that can explain the processes involved in the phenomenon being researched; ethnographic study, which is suitable for research topics that attempt to identify and interpret the culture of a specific group; phenomenology, which is suitable for research topics that attempt to identify the nature of research participants’ experiences or the phenomenon being researched; case studies, which aim to gain an in-depth understanding of a case that has unique characteristics and can be differentiated from other cases; action research, which aims to find solutions to problems faced by research participants, with the researchers taking the same position as the participants; and narrative research, which is suitable for research topics that attempt to interpret the entire life or individual experiences contained within the stories of research participants. Other methodologies include photovoice research, consensual qualitative research, and auto-ethnographic research.

Literature Analysis

Literature analysis results can be helpful in specifically selecting the research problem, theoretical framework, and research methods. The literature analysis process compels qualitative researchers to contemplate the new knowledge that their research will add to the academic field. A comprehensive literature analysis is encouraged both in qualitative and quantitative research, and if the prior literature related to the subject to be studied is insufficient, it is sometimes evaluated as having low research potential or research value. Some have claimed that a formal literature review should not be performed before the collection of field data, as it could create bias, thereby interfering with the investigation. However, as the qualitative research process is cyclic rather than unidirectional, the majority believes that a literature review can be performed at any time. Moreover, an ethical review prior to starting the research is a requirement; therefore, the research protocol must be prepared and submitted for review and approval prior to conducting the research. To prepare research protocols, the existing literature must be analyzed at least to a certain degree. Nonetheless, qualitative researchers must keep in mind that their emotions, bias, and expectations may interject themselves during the literature review process and should strive to minimize any bias to ensure the validity of the research.

Selection of the Research Participants and Data Collection Methods

The subjects of qualitative research are not necessarily humans. It is more important to find the research subject(s) from which the most in-depth answers to the research problem can be obtained. However, the subjects in most qualitative studies are humans, as most research question focus on humans. Therefore, it is important to obtain research participants with sufficient knowledge, experience, and attitudes to provide the most appropriate answers to the research question. Quantitative research, which views generalizability as a key research goal, emphasizes the selection of research participants (i.e., the research sample that can represent the study’s population of interest), whereas qualitative research emphasizes finding research participants who can best describe and demonstrate the phenomenon of interest.

In qualitative research, the participant selection method is referred to as purposeful sampling (or purposive sampling), which can be divided into various types. Sampling methods have various advantages, disadvantages, and characteristics. For instance, unique sampling (extreme case sampling) has the advantage of being able to obtain interesting research findings by researching phenomena that have previously received little or no interest, and the disadvantage of deriving research findings that are interesting to only some readers if the research is conducted on an overly unique situation. Maximum variation sampling, also referred to as theoretical sampling, is commonly used in qualitative research based on the grounded theory. Selecting the appropriate participant sampling method that suits the purpose of research is crucial ( Table 2 ).

Sampling methods of selecting research participants in qualitative research

Once the researcher has decided how to select study participants, the data collection methods must be determined. Just as with participant sampling, various data collection methods are available, all of which have various advantages and disadvantages; therefore, the method must be selected based on the research question and circumstances. Unlike quantitative research, which usually uses a single data source and data collection method, the use of multiple data sources and data collection methods is encouraged in qualitative research [ 30 ]. Using a single data source and data collection method could cause data collection to be skewed by researcher bias; therefore, using multiple data sources and data collection methods is ideal. In qualitative research, the following data types are commonly used: (1) interview data obtained through one-on-one in-depth interviews and focus group discussions, (2) observational data from various observation levels, (3) documented data collected from personal or public documents, and (4) image data, such as photographs and videos.

Interview data are the most commonly used data source in qualitative research [ 31 ]. In qualitative research, an interview refers to communication that takes place based on a clear sense of purpose of acquiring certain information, unlike conversations that typically take place in daily life. The level of data acquired through interviews varies significantly depending on the researcher’s personal qualifications and abilities, as well as his or her level of interest and knowledge regarding the research topic. Therefore, interviewers must be trained to go beyond simply identifying the clearly expressed experiences of research participants to exploring their inner experiences and emotions [ 32 ]. Interview data can be classified based on the level of structuralization of the data collection method, sample size, and interview method. The characteristics of each type of interview are given in Table 3 .

Detailed types of interview methods according to the characteristics of in-depth interviews and focus group discussion

Observations, which represent a key data collection method in anthropology, refer to a series of actions taken by the researcher in search of a deep understanding by systematically examining the appearances of research participants that take place in natural situations [ 33 ]. Observations can be categorized as participant and non-participant, insider and outsider, disguised and undisguised, short- and long-term, and structured and unstructured. However, a line cannot be drawn clearly to differentiate these categories, and the degree of each varies along a single spectrum. Therefore, it is necessary for a qualitative researcher to select the appropriate data collection method based on the circumstances and characteristics of the research topic.

Various types of document data can be used in qualitative research. Personal documents include diaries, letters, and autobiographies, while public documents include legal documents, public announcements, and civil documents. Online documents include emails and blog or bulletin board postings, while other documents include graffiti. All these document types may be used as data sources in qualitative research. In addition, image data acquired by the research participant or researcher, such as photographs and videos, serve as useful data sources in qualitative research. Such data sources are relatively objective and easily accessible, while they contain a significant amount of qualitative meaning despite the low acquisition cost. While some data may have been collected for research purposes, other data may not have been originally produced for research. Therefore, the researcher must not distort the original information contained in the data source and must verify the accuracy and authenticity of the data source in advance [ 30 ].

This review examined the characteristics of qualitative research to help researchers select the appropriate qualitative research methodology and identify situations suitable for qualitative research in the healthcare field. In addition, this paper analyzed the selection of the research topic and problem, selection of the theoretical framework and methods, literature analysis, and selection of the research participants and data collection methods. A forthcoming paper will discuss more specific details regarding other qualitative research methodologies, such as data analysis, description of findings, and research validation. This review can contribute to the more active use of qualitative research in the healthcare field, and the findings are expected to instill a proper understanding of qualitative research in researchers who review and judge qualitative research reports and papers.

Ethics Statement

Since this study used secondary data source, we did not seek approval from the institutional review board. We also did not have to ask for the consent of the participants.

Acknowledgments

CONFLICT OF INTEREST

The authors have no conflicts of interest associated with the material presented in this paper.

AUTHOR CONTRIBUTIONS

Conceptualization: Pyo J, Lee W, Choi EY, Jang SG, Ock M. Data curation: Pyo J, Ock M. Formal analysis: Pyo J, Ock M. Funding acquisition: None. Validation: Lee W, Choi EY, Jang SG. Writing - original draft: Pyo J, Ock M. Writing - review & editing: Pyo J, Lee W, Choi EY, Jang SG, Ock M.

• Open access
• Published: 16 May 2024

How peer relationships affect academic achievement among junior high school students: The chain mediating roles of learning motivation and learning engagement

• Yanhong Shao 1 ,
• Shumin Kang 2 ,
• Quan Lu 3 ,
• Chao Zhang 2 &
• Ruoxi Li 4  

BMC Psychology volume  12 , Article number:  278 ( 2024 ) Cite this article

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Despite the recognition of the impact of peer relationships, learning motivation, and learning engagement on academic achievement, there is still a gap in understanding the specific mechanisms through which peer relationships impact academic achievement via learning motivation and learning engagement.

This study aims to investigate how peer relationships affect junior high school students’ academic achievement through the chain mediating roles of learning motivation and learning engagement, employing the self-system model of motivational development as the theoretical framework. In January 2024, 717 participants were selected from two middle schools in eastern China (mean age = 13.49 years, SD = 0.5). The data analysis in this study was performed using the structural equation model (SEM) in AMOS 24.0 and SPSS 24.0.

The results showed that peer relationships were directly and significantly related to junior high school students’ academic achievement, and that peer relationships were indirectly and positively related to junior high school students’ academic achievement via learning motivation and learning engagement respectively. The results also revealed a significant indirect and positive relationship between peer relationships and junior high school students’ academic achievement, mediated by the sequential mediating roles of learning motivation and learning engagement. Moreover, the path “peer relationship→learning motivation→academic achievement” has the strongest indirect effect.

For junior high school students to achieve academic success, the appropriate interventions should be implemented to improve peer relationships, learning motivation, and learning engagement.

Peer Review reports

Introduction

Academic achievement is a multifaceted construct that can be defined in broad and narrow aspects. Marsh and McCallum defined it broadly as the extent to which students achieve the objectives or goals of their educational institution or program [ 1 ]. In contrast, Hattie defined it narrowly as the progress that students make in their academic studies, demonstrated through their performance on tests, exams, and other assessments [ 2 ]. Many researchers have adopted the narrow definition, focusing on test scores in specific subjects [ 3 , 4 , 5 ]. In China, academic achievement is often measured by test scores in Chinese, Math, and English [ 6 , 7 ]. Therefore, academic achievement in this study refers to students’ test scores in these subjects. Academic achievement holds substantial importance not only for students’ future prospects but also serves as a critical indicator for evaluating the effectiveness of national educational systems [ 8 ].

Peer relationships have been recognized as influential factors in adolescents’ academic achievement [ 9 ]. Peer relationships refer to the social interactions and connections that individuals establish with their peers, including interpersonal relationship, social emotion, communication interaction [ 10 ]. They can have a profound impact on students’ academic outcomes, as peers can serve as sources of both positive and negative influence. Positive peer relationships have been associated with higher levels of academic achievement, while negative peer relationships can hinder students’ academic progress [ 11 ].

Learning motivation and learning engagement are two psychological constructs that have been extensively studied in relation to academic achievement [ 12 ]. Learning motivation encompasses the internal drive and inclination to participate in learning activities, which can be classified into two main categories: intrinsic motivation and extrinsic motivation [ 13 ]. Intrinsic motivation stems from personal interest, curiosity, and the inherent satisfaction derived from the learning process itself, while extrinsic motivation is driven by external factors such as rewards, grades, or social recognition [ 14 ]. Learning engagement encompasses the active involvement, effort, and persistence that individuals exhibit during the learning process, categorized into three components: vigor, dedication, and absorption [ 15 ]. Vigor is often used to describe an individual’s level of enthusiasm, engagement, and persistence in their studies. Dedication refers to an individual’s commitment and devotion to their academic pursuits. Absorption refers to an individual’s deep focus and concentration on what is studied [ 16 ]. Both learning motivation and learning engagement have been found to exhibit a positive correlation with academic achievement. For example, Wentzel suggested that learning motivation plays a positive role in academic achievement [ 17 ]. Similarly, Li et al. observed a noteworthy positive association between academic motivation and mathematics achievement among junior high school students [ 18 ]. Liem and Martin posited that school engagement has a positive impact on academic performance [ 19 ]. The findings highlight the importance of considering both learning motivation and learning engagement in understanding academic achievement.

Despite scholars proposing the influence of these factors on academic achievement, the specific mechanisms through which peer relationships influence academic achievement via learning motivation and learning engagement remain underexplored. To address this research gap, the primary objective of the current study is to investigate the interactive effects of peer relationships, learning motivation, and learning engagement on academic achievement, thereby providing a holistic comprehension of the interplay between these factors. Furthermore, this study endeavors to examine the chain mediating roles of learning motivation and learning engagement in the association between peer relationships and academic achievement among junior high school students. By examining these mediating pathways, this study seeks to elucidate the underlying mechanisms by which peer relationships impact academic outcomes. This study differs from those in investigating the chain mediating roles of learning motivation and learning engagement in the association between peer relationships and academic achievement within a unified conceptual framework, contributing to a deeper understanding of the factors that shape students’ academic success.

The self-system model of motivational development (SSMMD) serves as a conceptual framework for this study. Proposed by Connell and Wellborn [ 20 ] and supported by Skinner et al. [ 21 ], the SSMMD is rooted in the self-determination theory [ 22 ] and emphasizes the importance of individuals’ intrinsic motivation and psychological needs for autonomy, competence, and relatedness [ 23 ]. The SSMMD comprises four interconnected components: social context, self-system, action, and developmental results. The social context, consisting of peers, teachers, and parents, shapes an individual’s self-system. It is within this social context that an individual’s self-beliefs, motivation, and engagement in activities are developed. The self-system, as a relatively stable personal resource, is influenced by long-term interactions with the surrounding context and can effectively predict the level of involvement in activities. This level of involvement, in turn, directly influences various aspects of an individual’s development, including behavior and academic performance [ 24 ]. The SSMMD presents a linear developmental pathway, where the social context influences the self-system, which then influences actions and subsequently developmental outcomes. In this study, we utilize the SSMMD framework to explore the relationship between peer relationships, learning motivation, learning engagement, and academic achievement. The relationship between the four variables and SSMMD can be elaborated as follows: Peer relationships, as a component of the social context, shapes an individual’s self-beliefs, which significantly influences their learning motivation. Students who possess higher levels of learning motivation are more likely to get active engagement in learning activities (as a component of the action), and impact their academic achievement positively (as a developmental outcome) [ 25 ]. Based on this model, this study hypothesizes that peer relationships (as a social context factor) may influence adolescents’ learning motivation (as a self-system factor), which in turn affects their learning engagement (as individual action), ultimately resulting in a positive impact on academic achievement (as developmental outcomes). This theoretical model in the study is visually represented in Fig.  1 .

The proposed theoretical model

Peer relationships and academic achievement

Previous research has consistently demonstrated the positive influence of peer relationships on academic achievement [ 26 ]. Several studies have examined the positive impact of peer relationships on overall academic achievement. For instance, Wentzel noted that peers’ support in homework was positively related to academic achievement [ 17 ]. Jacobson and Burdsal found that positive peer influence in middle schools predicted higher academic achievement [ 27 ]. In a longitudinal study, Gallardo et al. (2016) demonstrated the positive influence of peer relationships on mid-adolescents’ academic achievement [ 11 ]. Additionally, research has investigated the positive effects of peer relationships on academic achievement in specific subjects. For example, Li et al. reported a significantly positive effect of peer relationships on the mathematics achievement of junior high school students [ 18 ]. Li et al. (2020) identified a significantly positive connection between peer relationships and science literacy among 596 ethnic minority junior school students in China [ 28 ]. Moreover, previous studies have suggested that the positive impact of peer relationships on academic achievement increases with grade level [ 29 ] and that same-gender peer relationships are particularly important in predicting academic achievement [ 19 ]. Overall, these findings emphasize the critical role of positive peer relationships in academic achievement, highlighting that adolescents who cultivate supportive relationships with their peers are more inclined to achieve success in their academic pursuits. On the basis of this, the following hypothesis is proposed.

H1: Peer relationships are positively correlated with academic achievement.

Learning motivation as a mediator

Peer relationships have been demonstrated to have a significant influence on learning motivation [ 11 ]. Positive peer relationships can enhance students’ motivation in learning by providing support, encouragement, and a sense of belonging. For example, Li et al. have indicated that positive peer relationships could encourage students to strive towards predetermined learning goals [ 30 ]. Similarly, Kuo et al. have shown that regular peer interaction could increase students’ motivation and interest in learning [ 31 ]. Wentzel et al. conducted a questionnaire survey involving 240 participants, and found that adolescents who receive positive support from their peers are more prone to exhibit higher levels of motivation [ 32 ]. In a study by Huangfu et al. it was observed that peer support in the context of chemistry education had a significant positive impact on students’ continuing motivation in chemistry [ 33 ]. Conversely, negative peer relationships can lead to decreased motivation. For instance, Juvonen and Graham found that students who experienced bullying, as a form of negative peer relationship, reported lower levels of motivation to engage in academic tasks [ 34 ]. Similarly, Wentzel et al. revealed that peer rejection, as another form of negative peer relationship, was associated with lower levels of intrinsic motivation in students [ 35 ]. These finding underscore the crucial role of peer relationships in influencing students’ motivation in specific academic domains.

Furthermore, learning motivation has been found to have a positive correlation with academic achievement [ 36 ]. Students who possess high levels of motivation to learn tend to excel in classroom activities, put forth great effort to complete their learning assignments, and achieve their academic achievement [ 37 ]. Researchers have demonstrated that learning motivation, as a potential mechanism is associated with perceived academic achievement [ 38 ]. Moreover, intrinsic motivation has been found to have a positive correlation with students’ grades, while extrinsic motivation shows a negative association with academic outcomes [ 39 ]. In addition, researchers have shown that learning motivation exerts both direct and indirect influences on students’ academic achievement through learning activities [ 40 ]. Peer interactions have also been emphasized as influential factors in adolescent learning motivation and subsequent learning outcomes [ 41 ]. Li et al. highlighted the mediating role of learning motivation in the relationship between peer relationships and mathematics achievement [ 18 ]. Although the study focused on Zhuang ethnic minority students in China and limited the academic achievement to mathematics, it provides valuable insights and direction for the mediation hypothesis in this research. Based on these findings, the following assumptions are proposed:

H2: Peer relationships are positively correlated with learning motivation.

H3: Learning motivation is positively correlated with academic achievement.

H4: Learning motivation mediates the association between peer relationships and junior high school students’ academic achievement.

Learning engagement as a mediator

Research has consistently shown that peer relationships have an impact on students’ learning engagement [ 42 ]. For instance, Kiefer et al. have proposed that peer support may help middle school students improve their learning engagement [ 43 ]. Besides, Research has demonstrated that both academic and emotional support from peers can enhance students’ learning engagement [ 44 ]. Lee et al. have claimed that peer interaction can help students sustain their engagement in e-learning [ 45 ]. In addition, Yuan and Kim have suggested that peer appraisal in peer interactions can affect teenagers’ cognitive and emotional involvement [ 46 ].

Learning engagement is considered to be an important factor that affects students’ academic achievement [ 12 ]. High levels of learning engagement allow students to devote more time to learning activities and ultimately achieve better academic outcomes [ 47 ]. Liem and Martin found that active participation and investment in learning activities positively predict academic success [ 19 ]. Wang et al. further supported this by demonstrating that higher levels of classroom engagement are associated with better academic performance [ 4 ]. Additionally, Saqr et al. highlighted the longitudinal effects of engagement, showing that sustained high levels of engagement lead to improved academic outcomes over time [ 48 ]. Taken together, these recent studies underscore the critical role of student engagement in fostering academic achievement.

Learning motivation has been demonstrated to have a significant impact on students’ engagement in learning activities [ 49 ]. When students are motivated to learn, they are more likely to set ambitious goals and actively participate in their learning activities [ 50 ]. Research has consistently found a positive relationship between learning motivation and engagement [ 25 , 41 ]. For instance, a study by Froiland and Worrell explored the role of motivation in student engagement and found that intrinsic motivation, which stems from personal interest and enjoyment, was positively associated with higher levels of engagement [ 51 ]. Similarly, a study by Huang and Yang highlighted the importance of learning motivation, where students feel a sense of desire and enjoyment in their learning, in promoting engagement [ 52 ]. The self-system model of motivational development suggests that social contexts, including interactions with peers, can impact students’ self-systems, such as their motivation and self-efficacy in learning. When students’ self-systems, including learning motivation, are strengthened, they are more likely to engage in learning activities, leading to improved academic outcomes, such as academic achievement. Therefore, based on the aforementioned research, it is postulated that peer relationships can promote academic achievement by enhancing students’ motivation and engagement in learning activities. Hypotheses were derived from the aforesaid analysis:

H5: Peer relationships are positively correlated with learning engagement.

H6: Learning motivation is positively correlated with learning engagement.

H7: Learning engagement is positively correlated with academic achievement.

H8: Learning engagement mediates the association between peer relationships and junior high school students’ academic achievement.

H9: Learning motivation and learning engagement play a chain mediating role in the association between peer relationships and junior high school students’ academic achievement.

Materials and methods

Sampling and data collection.

Prior to conducting the survey, ethical approval and support were obtained from the Ethics Committee of Qufu Normal University. To ensure the privacy and confidentiality of the students, several measures were implemented. Firstly, the personal identification information of the students was anonymized, with the utilization of student ID numbers instead of real names on the questionnaire. Secondly, explicit assurances were provided to the participants that designated members of the research team would have access to and process the collected data. Lastly, strict adherence to legal regulations and ethical guidelines was maintained throughout the entire research process.

The sample size for the study was determined based on the guidelines of Structural Equation Modeling (SEM), which recommend a sample size of at least ten times the total number of observed variables [ 53 ]. Consistent with this recommendation, a sample of 717 participants, aged 13–14 years old, was drawn from two middle schools in Jiangsu province, Eastern China, in January 2024. The two schools selected for this study, in that they exhibit diversity in terms of student backgrounds, academic performance, and socio-economic status, reflecting the overall characteristics of students in the region. The participants were randomly chosen from Grades 7 and 8.

Data collection consisted of two distinct steps. Firstly, paper questionnaires were distributed with an explanation of the study. Students were encouraged to participate in the study voluntarily and express their ideas freely. Those who did not provide informed consent or failed to complete the questionnaire were excluded from the analysis. Totally, 717 valid questionnaires were collected, with a response rate of 89.6%. Secondly, the students’ academic achievement was also collected as part of the study. Specifically, the study collected scores from the final exams in the subjects of Chinese, math, and English as a measure of participants’ academic achievement, and matched the students’ grades with their IDs. To ensure comparability and facilitate analysis across different subjects, the overall scores, ranging from 0 to 120 were standardized. These standardized scores were then utilized as the observational variables of academic achievement.

Research instruments

Peer relationship scale.

Peer relationships were measured by the Peer Relationship Scale developed by Wei [ 10 ]. This scale comprises 20 items, categorized into three dimensions: interpersonal relationship (e.g., “My classmates all enjoy being with me.”), social emotions (e.g., “When I am with my classmates, I feel very happy.”), communication interaction (e.g., “If I see my classmates feeling upset or crying, I will go comfort them.”). The 5-point Likert scale was used, with scores ranging from 1 to 5 indicating “strongly disagree” to “strongly agree”, with higher scores indicating higher peer relationships. The scale has good reliability and validity, which has been validated by recent research [ 54 ].

Learning motivation scale

Learning motivation was measured by the Learning Motivation Scale, developed by Amabile et al. [ 55 ], and later revised by Chi et al. [ 56 ]. This scale comprises 30 items, including two subscales for intrinsic motivation (e.g., “I enjoy independently thinking to solve difficult problems.”) and extrinsic motivation (e.g., “I care a lot about how others react to my opinions.”). The scale uses a 4-point rating, with scores ranging from 1 to 4, representing “strongly disagree” to “strongly agree”. Studies have demonstrated good reliability and validity of this scale among Chinese adolescents [ 49 ].

Learning engagement scale

Learning engagement was assessed by the scale revised by Fang et al. [ 57 ] based on the Utrecht Work Engagement Scale-Student (UWES-S) [ 58 ]. This scale comprises 17 items, including three dimensions: vigor (e.g., “I feel energized when studying.”), dedication (e.g., “When I study, I feel time flying.”), and absorption (e.g., “I take pride in my learning.”). The scale uses a 7-point rating, with scores ranging from 1 to 7, representing “Never” to “Always”. The scale demonstrated good reliability, which has been validated by An et al. [ 49 ]

• Academic achievement

Based on previous research [ 4 , 5 , 6 , 7 ], this study employed the final exam scores in Chinese, Mathematics, and English for grades 7 and 8 during the first semester as measures of academic achievement. A significant correlation was observed among the scores of these three subjects. Subsequently, the scores for each subject were standardized, and the average of these standardized scores was calculated as the overall indicator of academic achievement.

Statistical analysis

Data analysis was conducted using Amos 24.0 and SPSS 24.0. Initially, the Harman single-factor test was performed to explore the possibility of common method bias. Subsequently, descriptive analysis was carried out to provide an accurate portrayal of the sample’s characteristics. Then, a structural equation modeling (SEM) analysis was conducted to test both the measurement and structural models. The measurement model was assessed through confirmatory factor analysis, while the structural model was evaluated by analyzing goodness-of-fit indices and path coefficients. Lastly, the significance of mediating effects was determined using the bootstrapping approach.

Common method variance

To mitigate potential bias inherent in self-reported data obtained from junior high school students, the Harman single-factor test was conducted using SPSS 24.0 [ 59 ]. According to the test result, 11 factors exhibited characteristic roots exceeding 1, with the first factor accounting for 31.029% of the total variance, which fell below the critical threshold of 40% [ 60 ]. These findings suggest that no significant common method variance was present, indicating that the study’s reliability and validity were not substantially impacted.

Sample characteristics

The sample was composed of 717 participants selected from two middle schools in eastern China. The average age of participants was 13.49 years (SD = 0.5, range = 13–14 years). As indicated in Table  1 , the sample was gender-balanced, with males accounting for 50.1% and females accounting for 49.9%. The distribution of students across different grades was as follows: 53.7% in Grade Seven and 46.3% in Grade Eight. The majority of students resided in towns. Regarding the educational level of the participants’ fathers, 48.8% had completed junior high school or below, 36.8% had attended senior high school or vocational school, 8.9% had attended college, and 5.4% had attended university. Similarly, for the participants’ mothers, 51.9% had completed junior high school or below, 33.8% had attended senior high school or vocational school, 9.2% had graduated from colleges, and 5.2% had attended university.

Measurement model

The conventional approach to assessing a measurement model involves examining its reliability and validity [ 53 ]. In this study, the skewness of the 4 variables ranged from − 1.867 to 1.111, and the kurtosis ranged from − 0.351 to 3.512, which conforms to the normal distribution standards proposed by Hair et al. [ 61 ], providing a basis for the subsequent analysis. Reliability is commonly evaluated using Cronbach’s alpha, with coefficients from 0.80 to 0.89 considered acceptable. Convergent validity is evaluated through standardized factor loadings, composite reliability (CR), and average variance extracted (AVE), where values exceeding 0.5 are deemed acceptable [ 62 ]. Discriminant validity is assessed by comparing the square root value of AVE with the correlation coefficient value between constructs. It is generally expected that the square root value of AVE will exceed the correlation coefficient value [ 63 ].

Table  2 presents the results of the reliability and convergent validity analysis. The measurement model demonstrated acceptable reliability, as indicated by Cronbach’s alpha coefficients ranging from 0.839 to 0.961. Additionally, the standardized factor loadings ranged from 0.762 to 0.922, while the composite reliability (CR) and average variance extracted (AVE) values ranged from 0.835 to 0.937 and from 0.678 to 0.832, respectively, indicating acceptable convergent validity. Table  3 shows that the square root values of AVE for each construct were larger than the correlation coefficient values between the other constructs, indicating acceptable discriminant validity.

Structural model

The structural model was evaluated using the goodness-of-fit indices and path coefficients. Jackson et al. have suggested that a structural model fits the data when the goodness-of-fit index is between 1 and 3 for x 2 / df, greater than 0.9 for GFI, AGFI, NFI, TLI, and CFI, less than 0.08 for SMSEA [ 64 ]. Table  4 displays the following fit indices: X 2 / df = 1.142 (X 2  = 2663.1543, df = 2331), GFI = 0.946, AGFI = 0.942, CFI = 0.993, TII = 0.993, NFI = 0.946. All the values met the recommended thresholds, indicating a good fit for the structural model. Additionally, sensitivity analysis indicated that the effect size was 0.49, meeting the threshold proposed by Cohen [ 65 ] for a strong statistical test with a sample size of 717.

Hypothesis test

As depicted in Table  5 , the results revealed a significant and positive association between peer relationships and academic achievement (β =  0.178 , P  < 0.001), providing support for H1. A significant and positive correlation was observed between peer relationships and learning motivation (β =  0.534 , P  < 0.001 ), conforming H2. Learning motivation was found to have a significant and positive impact on academic achievement (β =  0.181, P  <  0.001 ), thus supporting H3. Peer relationships exhibited a significant and positive influence on learning engagement (β =  0.183 , P  < 0.001 ), providing support for H5. Learning motivation had a significant and positive effect on learning engagement (β =  0.224 , P  < 0.001 ), thus H6 was supported. Learning engagement demonstrated a significant and positive impact on academic achievement (β =  0.217 , P  < 0.001 ), providing support for hypothesis H7. Overall, the empirical data supported the expected directions of H1, H2, H3, H5, H6, and H7, indicating the significance of these relationships.

Analyses of the mediating effect of peer relationship on academic achievement

In this study, Structural Equation Modeling (SEM) was employed as the statistical technique to examine the mediating effect of learning motivation and learning engagement. SEM is considered more appropriate for examining mediation [ 66 ]. To determine the confidence intervals for the mediation effects in SEM, the bootstrap method was utilized [ 67 ]. Specifically, a mediating effect is considered statistically significant when the 95% bias-corrected confidence intervals (95% bias-corrected CI)does not include 0, and t exceeds 1.96 [ 68 ]. For data analysis, Amos 24.0 software was utilized. In this analysis, academic accomplishment was considered as the dependent variable, while peer relationship was treated as the independent variable. Additionally, learning motivation and learning engagement were regarded as mediating variables. To enhance the reliability of our results, a bootstrap resample size of 5000 was utilized, and the bias-corrected confidence interval level was set at 95%.

The results indicated in Table  6 demonstrate the statistical significance of the total effect and direct effect of peer relationships on academic achievement. The total effect of peer relationships on academic achievement was 2.510 (t = 6.213, 95% bias-corrected CI [1.745, 3.309], P  < 0.01), while the direct effect was 1.313 (t = 3.712, 95% bias-corrected CI [0.487, 2.178], P  < 0.01). Furthermore, the analysis revealed significant indirect effects in three pathways. The pathway of peer relationships→learning motivation→learning engagement→academic achievement had an indirect effect of 0.191 (t = 2.653, 95% bias-corrected CI [0.076, 0.365], P  < 0.01). The pathway of peer relationships→learning motivation→learning engagement had an indirect effect of 0.713 (t = 2.493,95% bias-corrected CI [0.193, 1.326], P  < 0.01). Lastly, the pathway of peer relationships→learning engagement→academic achievement had an indirect effect of 0.293 (t = 2.307, 95% bias-corrected CI [0.081, 0.585], P  < 0.01). These results indicate that the three mediating effects were all statistically significant, providing support for H4, H8, and H9.

In addition, the indirect effect percentage of learning motivation and learning engagement as partial mediators were examined. As indicated in Table  6 , among the three significant indirect mediators, the indirect effect of learning motivation accounts for 59.5% of the total indirect effect, while the indirect effect of learning engagement accounts for 24.5% of the total indirect effect. Besides, the indirect effect of earning motivation and learning engagement accounts for 16% of the total indirect effect. The pathway “peer relationships → learning motivation → academic achievement” exhibited the strongest effect. The specific pathways of peer relationship acting on academic achievement through learning motivation and learning engagement are detailed in Fig.  2 .

The path diagram, *** p  <  0.001

This study aimed to examine the interactive effects of peer relationships, learning motivation, learning engagement, and academic achievement among junior high school students. Additionally, the study sought to investigate the potential mediating roles of learning motivation and learning engagement in the association between peer relationships and academic achievement within this specific context. The study tentatively demonstrated the applicability of SSMMD in explaining the factors influencing academic achievement in junior high school settings. The findings of the study are presented below.

The results of the study revealed a direct and positive association between peer relationships and academic achievement among junior high school students. This finding not only confirms the research result of Jacobson and Burdsal [ 27 ], and that of Gallardo et al. [ 11 ], showing a positive correlation between peer relationships and academic achievement among middle school students but also reflects the idea presented by Escalante et al. [ 69 ] that academic achievement is affected by school climate, of which peer relationships are the dominant factor. This finding can be attributed to the notion that junior high school students in China who have stronger peer relationships within their school environment may receive greater support in their learning endeavors. This increased support may help alleviate learning-related stress, bolster their confidence levels, and enhance their self-esteem, thereby contributing to improved academic performance [ 26 ]. Additionally, it is noteworthy that peer influence exerts a substantial impact on shaping students’ academic behavior. For instance, students may observe their peers’ self-regulated behavior and diligence and be inclined to imitate them, thereby adopting similar study habits and strategies [ 70 ]. This study further demonstrates that peer relationships are a predictive factor of academic achievement.

The results of the study indicated that learning motivation partially mediated the association between peer relationships and academic achievement among Chinese middle school students. The finding builds upon previous research conducted by Wentzel [ 17 ], as it further elucidates the mediating role of learning motivation as a mediator between peer relationships and academic achievement among junior high school students. This finding can be explained by the increased reliance on peers for support and guidance, particularly after transitioning to junior high school. In Chinese culture, where collective values and social harmony are emphasized, peer relationships serve as a crucial source of support and guidance for students [ 71 ]. This heightened interaction with peers positively influences their learning attitude and personal values [ 72 ]. Consequently, this positive influence on learning attitudes and personal values contributes to the enhancement of learning motivation, ultimately leading to improved academic achievements among junior high school students. Additionally, the study’s results indicated the most substantial mediating role of learning motivation, supporting the notion that motivation is a more critical contributor to academic achievement [ 25 ]. This finding provides further evidence of the significant role of learning motivation in mediating the correlation between peer relationships and junior high school students’ academic achievement.

The results of the study demonstrated that learning engagement also partially mediated the association between peer relationships and academic achievement among junior high school students. This suggests that a high level of learning engagement can help elucidate why junior high school students who foster positive relationships with their peers tend to exhibit improved academic performance. When students have positive peer relationships, their increased learning engagement is reflected in their active participation in class, eagerness to complete assignments, and proactive pursuit of additional learning opportunities, ultimately leading to enhanced academic achievement [ 19 ]. This finding aligns with prior research [ 73 , 74 ], which postulates that learning engagement is a pivotal factor linking peer relationships and junior high school students’ academic achievement. The connections that teenagers forge with their contemporaries will facilitate increased participation in the educational process, which in turn will lead to enhanced academic performance [ 75 ]. The finding provided more evidence that learning engagement plays a significant role in the link between peer relationships and academic achievement.

The study further revealed that learning motivation and learning engagement played a chain mediation role in the association between peer relationships and academic achievement, which is one of the most astonishing conclusions drawn from the investigation. This result aligns with the self-system model of motivational development [ 20 ], which suggests that positive interactions and support from peers contribute to the development of individuals’ learning motivation. This motivation, in turn, influences their level of learning engagement, leading to improved academic achievement. Furthermore, the study revealed that junior high school students’ learning motivation contributed less to their level of learning engagement (β = 0.244, P  < 0.001) than their peer relationships (β = 0.183, P  < 0.001). This suggests that junior high school students’ primary source of learning engagement was learning motivation, because motivation plays a crucial role in driving their interest, effort, and persistence in academic tasks [ 49 ].

The theoretical and practical implications

This study holds significant theoretical implications. Firstly, it un derscores the complex interplay between peer relationships, learning motivation, learning engagement, and academic achievement. This expands our understanding of the underlying mechanisms that link these variables together. Secondly, it provides empirical support for the self-system model of motivational development, which suggests that peer relationships have an indirect influence on academic achievement through the mediating roles of learning motivation and learning engagement. This highlights the significance of social factors in shaping students’ motivation and engagement in the learning process.

This study carries practical implications for educators. Firstly, fostering positive peer relationships should be prioritized in educational settings. Teachers should implement strategies to promote a supportive and external classroom environment, such as peer mentoring programs or cooperative learning activities. Besides, teachers should create an inclusive and internal classroom environment that values diversity and promotes respect, empathy, and cooperation. By enhancing positive interactions among students, the motivation and engagement of individuals can be positively influenced, leading to improved academic achievement. Secondly, interventions targeting learning motivation and learning engagement should be implemented. Regarding learning motivation, teachers should encourage students to participate in problem-solving activities that connect learning to students’ lives and experiences, and motivate students to embrace challenges and solve problems [ 76 ]. Furthermore, teachers should provide timely and constructive feedback that helps students monitor their learning progress and adjust their strategies accordingly to foster students’ sense of intrinsic motivation. Additionally, teachers should understand the pressures students face in the learning process and provide appropriate support and strategies, such as offering flexible deadlines and providing alternative assignments. To enhance learning engagement, teachers should strive to gain a deeper understanding of teenagers’ needs and employ tactics and skills that strengthen their commitment to learning through meaningful classroom activities. Additionally, emotional support should be provided to help prevent learning fatigue and promote a positive attitude toward the learning process.

This study contributes to the literature in two ways. Firstly, it investigates the complex relationships among peer relationships, learning motivation, learning engagement, and academic achievement utilizing the self-system model of motivational development, which may provide insights for future research in other countries. Secondly, it explores the mediating mechanism between peer relationships and junior high school students’ academic achievement through examining the roles of learning motivation and learning engagement. The novel perspective can enrich our understanding of the link between peer relationships and academic achievement among junior high school students.

Limitations and future research directions

There are some limitations that should be acknowledged. Firstly, the study was carried out in a cross-sectional manner, making it difficult to establish a causal relationship between variables. Therefore, future longitudinal research is needed to investigate the association between peer relationships and academic achievement more conclusively. Secondly, this study was conducted within the context of China’s test-oriented learning environment, which may limit the generalizability of the findings to other educational settings. To enhance the external validity of the study, future research should be conducted in different countries. Thirdly, the study did not account for potential confounding factors such as academic pressure and self-evaluation, which may also influence academic achievement. Future research should consider these factors within a comprehensive theoretical framework. Finally, apart from academic achievement, all other variables were self-reported by participants, which may introduce potential bias. Future studies could benefit from incorporating observational data from parents, teachers, and classmates to provide a more objective perspective.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to ethical issues but are available from the corresponding author on reasonable request.

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This work was supported by the International Chinese Language Education Research Program [Grant no. 23YH82C].

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YS designed the study, performed the statistical analysis, and contributed to writing the manuscript. QL also contributed to writing the manuscript. SK supervised all aspects of the study’s implementation, and reviewed the manuscript. CZ proofread the English expression and reviewed the manuscript. RL collected the data and performed the statistical analysis. All authors have read and approved the final manuscript.

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Shao, Y., Kang, S., Lu, Q. et al. How peer relationships affect academic achievement among junior high school students: The chain mediating roles of learning motivation and learning engagement. BMC Psychol 12 , 278 (2024). https://doi.org/10.1186/s40359-024-01780-z

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Can on-line gait training improve clinical practice? Study protocol for feasibility randomised controlled trial of an on-line educational intervention to improve clinician’s gait-related decision-making in ambulant children and young people with cerebral palsy

• Anna Hebda-Boon   ORCID: orcid.org/0000-0002-7091-2828 1 ,
• Adam P. Shortland 2 ,
• Aleksandra Birn-Jeffery 3 &
• Dylan Morrissey 1 , 4  

Pilot and Feasibility Studies volume  10 , Article number:  76 ( 2024 ) Cite this article

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Metrics details

Instrumented gait analysis (IGA) is an assessment and research tool with proven impacts on clinical decision-making for the management of ambulant children and young people with cerebral palsy (CYPwCP) but is underused and variably understood by relevant clinicians. Clinicians’ difficulties in gaining expertise and confidence in using IGA are multifactorial and related to access for clinical decision-making, limited training opportunities and inability to translate this training into clinical practice.

The primary aim of this study is to test the feasibility of an educational intervention to advance clinicians’ application of gait analysis in CYPwCP, to inform a definitive trial. The secondary aim is to measure the effect that appropriate IGA training has on physiotherapists’ knowledge, skills, confidence and behaviours. This will be a two-arm feasibility randomised controlled trial with an experimental and control group. The 6-week on-line intervention uses a multicomponent approach grounded in behavioural change techniques. A repeated measures design will be adopted, whereby participants will complete outcome measures at baseline, immediately after the intervention and at 4 months. The primary outcome measures (trial feasibility-related outcomes) are recruitment and engagement. The secondary outcome measures (trial research-related outcomes) are knowledge, skills, confidence and practice change. Outcome measures will be collected via online questionnaires and during observed skill assessments. Analysis of data will use descriptive statistics, two-way mixed ANOVA model and qualitative content analysis.

This study will determine feasibility of the definitive randomised control trial of educational intervention delivered to advance clinicians’ application of gait analysis in CYPwCP. This study offers the shift in emphasis from regarding IGA as a tool to a focus on clinicians’ requirements for access, training and a well-defined role to optimise utilisation of IGA. The impact of this should be better engagement with IGA and clinical practice change. This study will contribute to a body of educational research into clinical education of healthcare professionals and IGA training offering insight into high levels of evaluation evidence including clinical behaviour change.

Trial registration

Protocol has been registered with the Open Science Framework (osf.io/nweq6) in June 2023.

Peer Review reports

The National Institute for Clinical Excellence (NICE) refers to instrumented gait analysis (IGA) assessment as a preferable choice prior to gait-improving orthopaedic surgery [ 1 ]. The impact of IGA on decision-making in treatment planning and treatment outcomes for ambulant CYPwCP has been broadly debated in the literature particularly in areas of orthopaedic decision-making [ 2 , 3 , 4 , 5 ] and individually tailored nonsurgical treatments [ 6 , 7 ]. Generally, single event multilevel surgeries (SEMLS) are performed after IGA is conducted as the IGA results can help to determine which specific soft-tissue or bony surgical procedures should be performed [ 8 ]. Furthermore, studies show that use of IGA for treatment decision-making has potential to improve patient outcomes — authors indicate the positive gait-related outcomes and improvement in gait parameters when treatment matches IGA recommendations [ 9 , 10 , 11 ]. Despite this, more standardised access pathways for CYPwCP to IGA are yet to be established [ 7 , 12 ], and access to the IGA for other professionals involved in gait management such as physiotherapists or orthotists and their formal IGA education remains limited [ 13 ]. As a science, gait analysis brings a wide spectrum of knowledge and skills, making it hard to educate and successfully integrate it into undergraduate curricula [ 14 ]. Clinicians’ difficulties in gaining expertise and confidence in using IGA are multifactorial and can be related to lack of IGA access for clinical decision-making, limited training opportunities and inability to translate this training into clinical practice [ 15 ].

According to research, clinician-centred factors such as IGA training and affiliation to IGA laboratory [ 16 ] are shown to influence engagement with IGA-derived recommendations and may therefore impact on patient outcomes [ 17 ].

This indicates a required shift in emphasis from regarding IGA as a tool providing 3rd party recommendations to a focus on clinicians’ requirements for access, training and a well-defined role to optimise utilisation of IGA [ 17 ]. This is essential to address in order to improve inequity of access and patient outcomes. Findings of our previous research [ 15 , 17 ] provided context for the design and delivery of a feasibility randomised controlled trial (RCT) of an educational intervention to improve clinicians’ engagement with the IGA.

Study aims and objectives

The primary aim of this study is to determine the feasibility of an educational intervention to advance clinicians’ application of instrumented gait analysis in children and young people with cerebral palsy, to inform the design of a full trial. Objectives are as follows:

To establish the feasibility of a future randomised controlled trial of educational intervention.

Assess the rate of participant enrolment, retention and compliance with intervention.

Assess whether the inclusion and exclusion criteria for participants are appropriate.

Assess whether the duration of intervention is appropriate.

Assess whether intervention delivery in a virtual learning environment is feasible and acceptable.

Explore if the outcome measures are appropriate for the study aims.

Define the sample size for a definitive trial.

Explore the fidelity of intervention delivery.

Further understand the barriers and facilitators of the intervention.

The secondary aim is to measure the effect that appropriate IGA training and its delivery has on physiotherapists’ knowledge, skills and attitudes.

This feasibility trial protocol follows the SPIRIT statement on defining standard protocol items for clinical trials and its checklist [ 18 ] and the CONSORT statement extension to randomised pilot and feasibility trials and its checklist [ 19 ].

Trial design

This will be a two-arm feasibility randomised controlled trial with an experimental and control group. The 6-week on-line intervention delivered as part of the trial is a stand-alone, post-graduate level educational course called Virtual Gait Analysis Course for Paediatric Physiotherapists (VGAPP). Eligible physiotherapists who consent to take part in the study will be randomly allocated into experimental and control groups. A repeated measures design will be adopted, whereby participants will complete outcome measures at baseline, immediately after the intervention, and at 4 months. This will include collection of feedback as part of a full process evaluation.

The trial will be determined feasible if a priori set criteria based on primary outcome measures and included in the process evaluation will be achieved at or above agreed levels (see the ‘ Outcome measures ’ section of ‘ Methods ’). After conducting and reviewing outcomes of the full evaluation process, the decision about delivery of the definitive trial will be made.

Figure  1 shows the study flow diagram, and Table  1 indicates the schedule of enrolment, intervention, and outcome measures [ 18 ].

Study flow diagram

Participants

Study setting.

This study will be conducted virtually using Queen Mary University of London (QMUL) virtual learning environment (VLE), online questionnaires (SurveyMonkey), and Microsoft Teams, eradicating the need for participants to travel, reducing both cost and participants’ time. Participating clinicians will be working in a variety of settings (acute and community, special schools, both national health service and private settings) within the UK, where the data will be collected. Each participant’s data will be collected under their unique student number. To ensure anonymity, once data collection is complete, student numbers will be additionally coded.

Eligibility criteria

The aim of the inclusion and exclusion criteria is to ensure that participants are actively involved in assessment and treatment of ambulant CYPwCP and have currently available opportunities to apply the taught knowledge and skills in their workplace. The eligibility criteria were reviewed during the stakeholder focus groups including both clinicians and educators. Focus groups found inclusion and exclusion criteria appropriate for the feasibility trial (see Supplementary material).

Inclusion criteria are as follows:

18 years of age or older

Physiotherapists currently providing assessment and treatment to ambulant children and young people with cerebral palsy

Practicing within the UK (any National Health Service or private practice setting)

Exclusion criteria are as follows:

Outside of UK

Not currently employed as physiotherapist or on a career break

In rotational posts, where they could rotate to specialty not managing ambulant CYPwCP

Intervention

Design and refinement.

This educational intervention uses a multicomponent approach grounded in behavioural change techniques (BCTs). The overall aim of the intervention is to improve gait-related clinical practice.

Intervention (VGAPP) will be delivered via QMUL VLE and will comprise of pre-course resources and a 6-week course. Content of the VGAPP course has been developed based on evidence from the scientific literature, current best practice and informed by the scoping review [ 17 ], qualitative study [ 15 ] and results from a national survey of paediatric physiotherapists in the UK (unpublished, in review). Stakeholder engagement has been integral to the research and intervention design, delivery and evaluation process and included Patient and Families (PPI-A) interviews and Clinicians and Educators Focus Groups (PPI-B) (Fig.  2 ). PPI-A included children, young people and their families who have a lived experience of cerebral palsy and received IGA as part of management of their condition. PPI-A was involved in the design of intervention prior to involving clinicians in order to ensure that the project is centred around the needs of patients and to ensure that the practice behaviour change, and transfer of knowledge will directly benefit patients and their families. Themes, subthemes and illustrative quotes from patients and parents’ interviews and changes applied to the intervention and evaluation content are available in the Supplementary Table  1 . PPI-B were representatives from all UK nations, with a variety of paediatric physiotherapy specialisms, experience levels and from different work settings, thus providing invaluable insight and the opportunity for further refinement of the intervention design (in the areas of recruitment, eligibility criteria, sample size, control group intervention), content, delivery and evaluation methods. Themes, subthemes, and illustrative quotes from clinicians and educators focus groups and changes applied to intervention and evaluation content are available in the Supplementary Table  2 .

Stakeholder engagement

Through this process, several changes were implemented to the intervention content and assessment process in areas of communication, patient/family perspectives, orthotics, and linking elements of gait-related practice to the ICF domains. A detailed PPI involvement report, including the educational intervention refinement process is available from the corresponding author on reasonable request.

Pre-intervention resources

Pre-intervention resources will include the pre-course manual, ‘meet and greet’ forum and the reading list. Participants will be able to complete a self-diagnostic tool to identify and reflect on their current IGA engagement and barriers to confident gait-related practice.

Intervention components

The intervention will be a stand-alone, post-graduate level educational event delivered fully on-line. It will employ the delivery of weekly on-line plenary sessions incorporating active learning — synchronous on-line problem-based learning sessions and seminars integrating elements of experimental learning within the learning community. These sessions will be delivered by experienced educators and clinicians working in the instrumented gait analysis laboratories, with a track record of delivering education within the field of gait analysis and paediatric neurodisability. Educators will be approached via email by the lead researcher. Content of the intervention will encompass an array of gait analysis methods and an overview of equipment currently used in the clinical practice. This will include but will not be limited to clinical outcome measures, measurement software, videography techniques and setup, 3-dimensional motion laboratory equipment, and laboratory setup (examples of Vicon and Codamotion Systems). Intervention will comprise of weekly tasks (asynchronous) to facilitate revision and application in practice and formative assessment/feedback opportunities (short knowledge quizzes, open questions within the discussion forum) to support learning autonomy and facilitate participant’s recall and self-regulation. Table 2 provides an indicative number of hours for each activity to give an overall picture of the workload a participant would be expected to undertake.

The intended learning outcomes (ILOs) have been designed and benchmarked against the QAA Statements Physiotherapy (2001) Academic Content.

Academic content is as follows:

Demonstrates an understanding of the interdisciplinary knowledge that underpins gait analysis practice including elements of human anatomy, biomechanics, and gross motor development: C1

Demonstrates an understanding of the principles of typical gait pattern and how movement patterns are likely to be affected by some of the childhood diseases: C1

Demonstrates an understanding of the available measurement technologies and the principles on which they are based: C1

Disciplinary skills are as follows:

Applies variety of gait assessment methods in context of own practice and service delivery: B1 and C2

Uses the gait analysis outputs in clinical practice to aid treatment decision-making and measurement — in line with clinical reasoning paradigms and evidence-based practice: A1, B1, and C2

Communicates assessment findings and gait-related decision-making effectively with multidisciplinary team, patients, and families: A2, A3, B2, and C2

Attributes are as follows:

Cultivates an individualised, patient-centred approach to assessment and treatment planning: B2

Reflects on own practice to identify the needs within own role and wider aspects of service delivery: A3, A4, and B2 (health and social care equivalent B4)

Demonstrates a creative drive to implement the knowledge and skills, improve own practice, and support development of others: A3, A4, and B2 (health and social care equivalent B3)

Behaviour change techniques (BCT)

Utilisation of the BCT taxonomy [ 20 ] will support refinement of the targeted behaviours. It will also support the process evaluation analysis to gain understanding of how the change is expected to take place [ 21 ] and related barriers and facilitators of implementing the feasibility trial. To support knowledge transfer, several behaviour change techniques will be used in the intervention content.

Prior to the course, participants will gain access to a diagnostic session to identify potential internal and/or external barriers to their gait-related practice. They will be encouraged to set their personal and service goals and will be supported in making plans for delivery. Participants will share their plans and progress as part of the evaluation process.

A variety of synchronous (problem-based learning sessions) and asynchronous resources (lectures, reading links and podcasts) will incorporate instruction on how to perform new or refined gait-related practice behaviours. These resources will also support shaping of the participant’s knowledge through instruction and demonstration on how to perform the behaviours and setting clinically oriented practical tasks focusing on the behaviour. Throughout the course, participants will be provided strategies to support behaviours through associations such as regular prompts and cues, ideas on restructuring of their clinical environment to improve their gait assessment quality and techniques, or through objects which could be added into their environment (such as outcome measure templates — digital and/or printed). A virtual learning community, created through group chats and discussion forums, will aim to support emergence of the identity associated with changed behaviours.

Figure  3 outlines the simplified logic model of the study.

Feasibility RCT study logic model

Control group intervention

To compare the effects of the intervention against usual practice, participants allocated into the control group will be asked to continue with their usual practice. At the point of enrolment, the control group will gain access to the virtual learning environment and receive basic orientation resources, but no training or guidance will be offered during this time. Participants in the control group will be asked to complete the same measurements as those in the intervention group and at the same timepoints (Table  1 ). The control group will be offered the full intervention after the completion of the third round of assessments. Provision of educational content and its timing in the control group were reviewed during the stakeholder focus groups including of clinicians and educators.

Outcome measures

Outcome measures were grouped as primary outcome measures (trial feasibility-related outcomes) and secondary outcome measures (trial research-related outcomes) collated in Table  3 .

Recruitment will be determined as feasible if study is able to recruit 24 participants within 4 months [ 22 , 23 ]. Retention rates will be considered at two stages: (1) from expression of interest to consent — it will be deemed feasible if greater than 50%, and (2) from consent to course completion — it will be deemed feasible if greater than 75% [ 24 , 25 ]. Additionally, engagement (participants’ interactions with an online system) data will be collected during intervention via the analytics tools in the QMUL Virtual Learning Environment which log the detail of activity access, time, and completion for each component. These analytic tools are part of the general-purpose dashboard and provide an algorithmic representation of student online behaviours based on whether the behaviour occurred and for how long, rather than quality of these behaviours. Previous studies show that these analytics have been positively correlated with student performance [ 26 , 27 , 28 ]. It will be deemed feasible if the average proportion of completed learning sessions and tasks will be ≥ 66%.

Secondary outcomes are as follows: knowledge, skills, attitudes, and satisfaction will be collected via online questionnaires (SurveyMonkey) and during skill tests (OSCE). Knowledge, skills, and attitudes will be collected at three timepoints (Table  1 ).

Baseline (pre-intervention)

Questionnaire including background (demographics, current gait analysis practice, access to IGA equipment, barriers to gait analysis practice), attitudes (reasons for joining the study, anticipated changes in practice after the intervention, beliefs), confidence (self-rated), and knowledge (self-rated and multiple-choice question test)

Objective structured clinical examination (OSCE) of a patient case: Assessment will be delivered on-line, recorded and scored against a standardised scoring sheet including gait-related clinical reasoning and treatment planning based on evidence and findings, problem-solving, systematicity of approach, ability to link various types of gait-related information, confidence in engagement with gait data, analysis of gait graphs, communication (including use of gait-related terminology, providing lay explanations to a parent), and implementation of biopsychosocial model or ICF to decision-making

Post intervention (immediately after 6-week intervention)

Questionnaire including attitudes (planning practice change, implemented practice change, beliefs), confidence (self-rated), knowledge (self-rated and multiple-choice question test), and satisfaction (experimental group only)

OSCE of a different patient case (scored against the same criteria as at baseline)

Re-test (4-month post-intervention)

Questionnaire attitudes (planning practice change, implemented practice change, beliefs), confidence (self-rated), and knowledge (self-rated and multiple-choice question test)

Knowledge and skills retention as well as attitudes will be measured between timepoints, with a focus on changes between baseline and immediately post intervention and at 4-month follow-up. Satisfaction questionnaire will contain 28 items, each assessed on a 5-point Likert scale, related to the relevance and scientific quality of the content, the educational structure, and delivery. Satisfaction feedback will be collected immediately after intervention delivery (experimental group).

Sample size

Considering the study objectives and recommendations, the target sample size will be of a minimum 12 participants per trial arm; therefore, a minimum of 24 in total is anticipated. Guidance from the National Institute for Health Research (NIHR) indicates that a sample size of 30 is appropriate to answer the questions posed by a feasibility trial [ 23 ]. A lower number of participants will be better suited for an educational intervention for clinicians — it will ensure delivery of a high-quality learning experience and allow for active engagement with tutors during problem-based learning within the experimental group. Furthermore, the stakeholder focus groups including of clinicians and educators reviewed the proposed sample size and reported it as appropriate for the feasibility trial.

Recruitment

Participants will be recruited via the largest national paediatric physiotherapy network (Association of Chartered Paediatric Physiotherapists) using bulletins, social media, and targeted emails to team leads across the UK. The advertisement will provide general information about the intervention and the research study together with inclusion and exclusion criteria. Upon expression of interest, participants will be screened against eligibility criteria, and the participant’s information sheet and consent form will be sent to prospective participants via email. Participants will return signed consent forms electronically to the research lead. In line with advice from the Clinician and Educator Focus Group (PPI-B), the recruitment of study participants will commence early to ensure that participants are able to make suitable arrangements in the workplace, such as request study leave and ‘block time’ to attend synchronous sessions etc.

Participant timeline

Time schedule of enrolment, intervention, and assessments is presented in Table  1 . After the eligibility criteria screen and receipt of their written informed consent, 24 participants will be enrolled to the study. After random allocation to the trial arms, participants will receive access to the password-protected online platform hosted by Queen Mary University of London. All participants will be asked to complete the baseline assessment including the questionnaire (background, attitudes, knowledge, and skills) and objective structured clinical examination (OSCE) of a patient case (assessment will be delivered on-line, recorded, and scored against standardised scoring sheet). After completing the baseline assessment, participants assigned to the experimental arm will gain access to the pre-course learning resources (6 weeks prior to start of the course). The experimental group will commence the 6 week blocks of intervention including pre-recorded resources, problem-based learning tasks, discussion forums, and live sessions. At 6 weeks, participants from both arms will be asked to complete the second assessment including the questionnaire (attitudes, knowledge and skills, and satisfaction scores in experimental group only) and the second OSCE of a patient case. Four months after the intervention, participants in both trial arms will be asked to complete the third assessment including the questionnaire (attitudes, knowledge, and skills) and the OSCE of a patient case. Once all the data is collected, participants in the control group will gain access to the prereading resources and start the 6-weekly intervention sessions.

Assignment of intervention

Allocation, concealment mechanism, and implementation.

Participants who meet the inclusion criteria and return the consent form will be assigned an ID number in the Microsoft Excel spreadsheet. Participants will be assigned to groups randomly. In case there are more eligible physiotherapists than spaces, participants will be chosen by the number generation software which will be used in the allocation process. This will be conducted by an external person not related to the study or the research team. To avoid contamination, participants from the same healthcare trusts will be randomised to the same group.

Information about group randomisation will be provided in the participant’s information sheet. Participants in this study will not be blinded to the group allocation or deceived. This was discussed in the stakeholder focus groups who agreed that in the context of clinical practice, deceiving participants could mean a loss of their study/annual leave if pre-booked specifically to attend the intervention as well as potential cancelations of clinics in the control group. Participants will be informed about their allocation at the time of receiving instructions with the QMUL VLE platform access. At this time, the control group will be informed about timings of gaining their access to the full intervention and all resources provided to the experimental group after final assessments are completed. Participants will be informed that they are free to withdraw at any time without needing to provide a reason and with no penalties or detrimental effects.

Data collection, management, and analysis

In line with accepted practice for feasibility studies, no power analysis will be conducted, and all analyses will be exploratory only [ 29 ]. Data analysis will be performed after the last trial participant has completed final assessments (outcomes at 4 months post intervention). Data will be managed initially in Microsoft Excel software and analysed using IBM SPSS statistics software. Table 3 provides a summary of outcome measures, hypotheses, and analysis planned in the study.

Data management and research governance

A baseline table (descriptive statistics and frequencies) will compare the demographic and clinical characteristics including gender, age, experience, education, practice setting, contract type, study leave availability to participate in intervention, access to equipment, and gait analysis training. The primary outcomes will be reported using descriptive statistics. The quantitative variables will be presented as means and standard deviations.

A preliminary analysis of between-group differences will be conducted to determine the range of potential effect sizes from repeated measures ANOVA. Feasibility outcomes will be presented as number of participants meeting the a priori definitions. Kendall’s tau-b ( τ b ) correlation coefficient will be used to measure of the strength and direction of association that exists between two variables measured on at least an ordinal scale. To explore the extent and patterns of missing outcome data, we will report the proportion of missing values per item and the proportion of participants who will complete all items on the questionnaires. The proportion of missing data will also be reported for the other key outcomes and compared between the participants from intervention and control groups.

Qualitative data will be analysed according to the framework approach [ 30 ], a realist approach located within an interpretivist frame. The opinions and experiences of participants will be explored to understand any barriers and facilitators related to running of the educational intervention. During active familiarisation, the textual data will be coded, and codes will be organised into themes and subthemes to construct a thematic framework to aid indexing. To ensure rigour and consistency, the analysis process will undergo investigator triangulation. In this process, different observers, examiners, and analysts will compare and check data collection and/or interpretation [ 30 , 31 ]. Qualitative data will be presented as quotes and descriptive summaries.

Process evaluation and implementation outcomes

The process evaluation has been informed by Medical Research Council guidance on process evaluation of complex interventions [ 32 , 33 ] and the Implementation Outcome Framework (IOF) [ 34 ]. Proctor et al. described eight implementation outcomes in the IOF: acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration (or coverage), and sustainability. Each of these implementation outcomes aligns with important considerations for trial design and implementation; however, the ‘adoption’ outcome does not directly align with process evaluation of our current feasibility trial design and delivery, as it is not offered by other educational providers. Therefore, seven out of eight implementation outcomes will be included in this process evaluation. Acceptability of the intervention and of the assessments will include data on the duration, content, and delivery methods (including satisfaction scores). Synthesis of satisfaction scores, feedback, and reports on participants’ logistics related to taking part in the trial (protected study time, ensuring opportunities in practice, assessment burden) will be carried out. The findings will be supplemented with observations made by the researchers, educators, administrative staff, and examiners throughout the implementation of the intervention. Collectively, these will provide information on the acceptability of the trial measurements and the intervention. Feasibility measures will include participant recruitment rate, retention, and engagement thresholds as described in the ‘ Methods ’ section. The process evaluation will include analysis of proportion of eligible participants being offered trial and, if possible, proportion of participants in the population represented by eligibility criteria (coverage).

Baseline comparisons will be conducted to detect any substantial differences between participants recruited from the control and intervention arms. Sample size and anticipated effect size defined for the definitive trial will be reviewed and assessed for feasibility. Participant withdrawals and number of participants lost to follow-up (and where possible reasons and participants’ key baseline characteristics) will be analysed. The study protocol adherence will be reviewed within the research team. Fidelity to the trial protocol including follow-up, dosage of the intervention, crossover between study arms, and adherence to intervention delivery plan will be assessed against study protocol and participant timelines. Any changes to the protocol will be reported.

Furthermore, appropriateness of the trial design for the trial aim, inclusion and exclusion criteria, outcome measures, and intervention components will undergo an exploratory analysis of participants’ outcomes, engagement with content, and assessments, together with qualitative analysis of participants and educators’ feedback. Sustained participant interest throughout the trial period and sustained staffing levels to deliver and facilitate participants’ learning journey during intervention will be explored to inform the sustainability criteria for the definitive trial. The implementation cost analysis will be explored with the aim to inform the design of a full cost-utility analysis alongside a future definitive trial. Implementation cost will include the cost of administration involved in running the trial and cost related to production and delivery of the intervention and assessment components — such as speaker fees, and OSCE examiners and moderators will be reviewed.

In addition, the COM-B model and the behaviour change techniques taxonomy (BCTT) [ 35 ], widely used frameworks in behaviour change and implementation research, will support the process evaluation analysis and an in-depth exploration of the barriers and facilitators of implementing the feasibility trial.

This article describes the protocol of a study evaluating the feasibility of conducting definitive RCT of the educational intervention for paediatric physiotherapists working with ambulant CYPwCP in the UK. This feasibility study was designed to assess predefined criteria related to the evaluation design (such as reducing uncertainty around recruitment, retention, choice of outcomes, analysis) and the intervention (its content and delivery, acceptability, adherence, cost-effectiveness, etc.) in line with the current guidance [ 32 , 33 ].

The educational intervention planned for this trial intends to integrate the complexity of knowledge, skills within the realities of clinicians’ practice to support knowledge translation to influence the practice behaviour change. Due to its complexity, the design of the study was preceded by in-depth research studies of the intervention’s context and implementation factors within the clinical practice reality of paediatric physiotherapists. This included close collaboration with stakeholders — patients and their families, clinicians, and clinical educators [ 33 ].

The need for gait analysis training was clearly identified in previous study of physiotherapists in the UK [ 13 ]. Despite extensive gait-related practice [ 36 , 37 ], evidence of how paediatric physiotherapists engage with instrumentation or access the IGA training is sparse. There are currently many gait-related courses available world-wide delivered by a variety of providers specifically targeting this clinical group (CMAS workshop 2023). Although there is a rich training offer, the impact of training on skills and behaviour, evaluation of needs, and barriers to knowledge transfer are not addressed in the current literature showing an evidence gap (CMAS 2023 education workshop). The impact of existing educational interventions is rarely reported [ 38 , 39 ] and concerns low levels of evaluation evidence, omitting evaluation clinical behaviour change or organisational impact. Our previous studies show that transfer of gait-related knowledge from the classroom to the clinic room also poses challenges to clinicians at different levels of practice expertise [ 15 ]. The lack of institutional resources (financial, such as availability of funding for staff’s training or limited study leave), spatial and temporal to promote implementation of new procedural skills and motivation to engage with learning, may also influence low uptake of professional training.

One of the main challenges will be associated with possible low uptake in the study and high drop-out rate. High work pressures and limited time to study may result in reduced opportunity or willingness to participate in the intervention and multiple assessments.

Limitations

Participants in this trial will not be blinded to allocation. After discussions within the research team and stakeholder focus groups, it was decided that if a participant secures study leave to take part in the 6-week intervention (potentially taking time off clinical work which may lead to cancellation of clinics) and would not receive the intervention due to allocation to the control group — this may result in loss of study leave and could have a potentially negative impact on the patient’s care by added waiting time.

The intervention lead is a paediatric physiotherapist experienced in gait-related practice which may be a source of potential bias. To mitigate this risk, multiple educators and clinical experts will be appointed to co-deliver the intervention, and additional examiners and moderators will be blinded to participants’ allocation. The intervention lead will keep a reflective diary and will have access to de-brief meetings within the research team [ 40 ]. Involvement of a considerable number of experts co-delivering the content of the intervention may pose risk to intervention integrity. To mitigate this risk, the intervention lead will be providing detailed 1:1 briefing about the study, targeted behaviours, session aims, and ILOs.

Generalisability

A relatively small sample planned for this feasibility study may pose questions regarding the applicability of findings to the future definitive trial and other studies. To ensure that the feasibility sample is representative of the UK paediatric physiotherapists, the study will be broadly advertised to reach therapists in all four UK countries and across the healthcare sectors.

Despite the extensive context research, a wide array of primary and secondary outcome measures planned to be used in the process evaluation, there may be factors influential to the trial but not be captured by the feasibility testing. Use of MRC guidance on process evaluation of complex interventions [ 32 , 33 ] and the IOF [ 34 ] will ensure thorough investigation of the change mechanisms and how the effects will occur [ 32 , 41 ]. Furthermore, the COM-B model and BCTT [ 35 ] are useful tools to characterise the targeted behaviours and content of educational interventions focused on continuing professional development in healthcare [ 42 ]. These were used throughout design of the study and will support the process evaluation to further advance understanding of their mechanisms of action.

With the detailed planning of this protocol and careful consideration of challenges and limitations, this study will offer essential preliminary data about the feasibility of implementing the VGAPP intervention to improve gait-related practice of paediatric physiotherapists in the UK. Study findings will provide a comprehensive understanding of whether a full randomised control trial is viable and identify any areas which could be enhanced. Furthermore, this study will contribute to a body of educational research into clinical training of healthcare professionals and IGA training.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.

Abbreviations

Behaviour change techniques taxonomy

Clinical Movement Analysis Society

Capability, opportunity, motivation, behaviour model

Consolidated Standards of Reporting Trials for Pilot and Feasibility trials

Children and young people with cerebral palsy

International Classification of Functioning, Disability and Health

• Instrumented gait analysis

Intended learning outcomes

Implementation Outcome Framework

Medical Research Council

National Institute for Clinical Excellence

Objective structured clinical examination

Patient and public involvement

Standard Protocol Items: Recommendations for Interventional Trials

Virtual gait analysis course for paediatric physiotherapists

Virtual learning environment

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Hebda-Boon, A., Shortland, A.P., Birn-Jeffery, A. et al. Can on-line gait training improve clinical practice? Study protocol for feasibility randomised controlled trial of an on-line educational intervention to improve clinician’s gait-related decision-making in ambulant children and young people with cerebral palsy. Pilot Feasibility Stud 10 , 76 (2024). https://doi.org/10.1186/s40814-024-01477-5

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Race-based police violence impacts wealth of Black families, study finds

F inancial decision-making for Black individuals can be dealt a major blow by race-based police violence, new research suggests, offering insight into the far-reaching effects of police brutality.

The study, titled "Race, Police Violence, and Financial Decision-Making," examined detailed American data on home ownership and contributions to a pension plan—using statistics broken down by ZIP code—as well as information on fatal police encounters.

The analysis suggests police violence negatively influence financial decision-making for Black individuals, even when they are not directly involved in the incidents.

"We find that when a member of the Black community is killed in a police incident, the members of that racialized group in that local area experience changes in their financial decision-making that are not just statistically significant, but economically large," says co-author Lisa Kramer, a professor of finance in the department of management at University of Toronto Mississauga and the Rotman School of Management.

"I think what was most surprising was the magnitude of the effects."

The study, which will appear in AEA Papers and Proceedings , was carried out by U of T's Kramer, Duke University's Vicki Bogan, University of Manitoba's Chi Liao and University of Mannheim's Alexandra Niessen-Ruenzi. It explored whether two key pieces of the "wealth pie" for most individuals—home ownership and retirement savings—might be affected by race-based police violence. While many studies have already looked at the grief and community trauma associated with race-based police violence, Kramer says the ripple effects on economic decision-making have been analyzed to a far lesser extent.

The research showed Black individuals were 47.5% less likely to own a home than their non-Black counterparts. After exposure to police-based violence, that gap increases to 62.2%, the study suggests. It also found that Black individuals' participation in defined contribution pension plans was reduced after exposure to police violence.

"We find already just to start with, just at the baseline, Black households are less likely to even own a home than others. And once they've observed one of these events in their local community, they become much less likely to own a home," Kramer says.

Since researchers analyzed demographic, socio-economic and geographic data from U.S. households from 1999 to 2019, some recent key events—including the 2020 Minneapolis police killing of George Floyd that prompted anti-racism protests all over the world—were not captured.

"I think in this more recent era, where social media allows these events to get on the collective consciousness more quickly and more fully, we might find that any sort of traumatic implications that arise might even be more pervasive," Kramer says.

And while the study is based on American data, Kramer says its findings likely apply in Canada as well.

"Certainly in Canada we have also had incidents of racialized violence with police involvement. We're not immune to that in Canada," she says. "There's every reason to believe that the effects that we document aren't unique to the United States."

The study doesn't delve into why police-based violence could have such an effect on financial decision-making for Black individuals, but it does hint at possible explanations, including disengagement from financial decision-making after police violence in a local area and decisions to relocate following an incident.

Kramer, who notes that the study does not seek to deliberately cast police forces in a negative light, says she and her colleagues want to explore possible causes for their findings in future research.

"Right now, we're identifying a striking set of results," she says. "We find differences in financial outcomes at the local community level after these police-involved fatalities. Next, we need to identify the mechanisms that drive the results by testing different hypotheses."

The hope is that the research will add to broader findings on racial inequalities and spark ideas about potential remedies to underlying problems.

"We're looking to explore those events through a financial lens because it's so important to make sure that households have the financial resources that they need," Kramer says. "And if there is a connection there—as it appears there may be—we want to start the conversation, in a data-driven way."

More information: Race, Police Violence, and Financial Decision-Making, AEA Papers and Proceedings (2024)

Provided by University of Toronto

• Open access
• Published: 21 May 2024

Exploring shared decision-making needs in lung cancer screening among high-risk groups and health care providers in China: a qualitative study

• Xiujing Lin 1 ,
• Fangfang Wang 1 ,
• Yonglin Li 1 ,
• Fang Lei 2 ,
• Weisheng Chen 3 ,
• Rachel H. Arbing 4 ,
• Wei-Ti Chen   ORCID: orcid.org/0000-0002-2342-045X 4 &
• Feifei Huang   ORCID: orcid.org/0000-0003-0197-8687 1  

BMC Cancer volume  24 , Article number:  613 ( 2024 ) Cite this article

Metrics details

The intricate balance between the advantages and risks of low-dose computed tomography (LDCT) impedes the utilization of lung cancer screening (LCS). Guiding shared decision-making (SDM) for well-informed choices regarding LCS is pivotal. There has been a notable increase in research related to SDM. However, these studies possess limitations. For example, they may ignore the identification of decision support and needs from the perspective of health care providers and high-risk groups. Additionally, these studies have not adequately addressed the complete SDM process, including pre-decisional needs, the decision-making process, and post-decision experiences. Furthermore, the East-West divide of SDM has been largely ignored. This study aimed to explore the decisional needs and support for shared decision-making for LCS among health care providers and high-risk groups in China.

Informed by the Ottawa Decision-Support Framework, we conducted qualitative, face-to-face in-depth interviews to explore shared decision-making among 30 lung cancer high-risk individuals and 9 health care providers. Content analysis was used for data analysis.

We identified 4 decisional needs that impair shared decision-making: (1) LCS knowledge deficit; (2) inadequate supportive resources; (3) shared decision-making conceptual bias; and (4) delicate doctor-patient bonds. We identified 3 decision supports: (1) providing information throughout the LCS process; (2) providing shared decision-making decision coaching; and (3) providing decision tools.

Conclusions

This study offers valuable insights into the decisional needs and support required to undergo LCS among high-risk individuals and perspectives from health care providers. Future studies should aim to design interventions that enhance the quality of shared decision-making by offering LCS information, decision tools for LCS, and decision coaching for shared decision-making (e.g., through community nurses). Simultaneously, it is crucial to assess individuals’ needs for effective deliberation to prevent conflicts and regrets after arriving at a decision.

Peer Review reports

Low-dose computed tomography (LDCT) is an effective tool for early lung cancer detection and has been proven to enhance survival rates in individuals at high-risk for lung cancer [ 1 , 2 ]. However, global LDCT usage is limited, with only 2-35% of eligible individuals undergoing screening [ 3 , 4 , 5 , 6 , 7 ], in contrast to 16-68% of eligible candidates undergoing colorectal cancer screening [ 8 ]. Improvements in LDCT screening rates for high-risk groups have been modest. The intricate balance between the advantages and risks of LDCT impedes the utilization of lung cancer screening (LCS) [ 9 ]. Notably, compared to their non-screened counterparts, high-risk individuals who underwent LDCT had a remarkable 24% decrease in lung cancer mortality [ 2 ]. However, the benefits of LDCT come with potential drawbacks, such as radiation-induced cancer, needless examinations, invasive procedures stemming from false positives, overdiagnosis, incidental discoveries, and psychological burdens [ 10 ]. These complexities render the LDCT screening decision-making process multifaceted and reliant on personal preferences. Hence, guiding high-risk groups toward well-informed choices regarding LCS is pivotal and represents a substantial mechanism for advancing the secondary prevention of lung cancer.

Shared decision-making is defined as “a collaborative approach for health care providers and patients in making informed health decisions”, which involves considering evidence regarding the benefits and risks of medical options, as well as individuals’ preferences and values [ 11 ]. This decision-making process allows both health care providers and individuals as well as their family members to engage in deliberation which leads to identifying the most appropriate decision for the situation [ 12 ]. Multiple guidelines strongly recommend shared decision-making as an essential step before patients undergo LDCT. Shared decision-making is also stipulated as a prerequisite for LDCT reimbursement by the Centers for Medicare and Medicaid Services in the United States [ 13 , 14 , 15 , 16 ]. Regrettably, the utilization of shared decision-making in clinical practice is currently not optimal [ 17 , 18 ]. Patients do not know what LDCT is, and they often report a lack of about the risks and benefits of LDCT. As a result, patients often have concerns about the risks of LDCT, and health care providers frequently fail to inquire about individuals’ preferences [ 19 ]. Consequently, there has been a notable increase in the literature focusing on barriers to shared decision-making from the perspectives of both health care providers and lung cancer high-risk groups. For example, studies have shown that the barriers to shared decision-making include different perceptions about the use of shared decision-making and a lack of time to communicate with providers. However, there are some limitations in terms of methodology and the comparative nature of the studies that focus on LCS shared decision-making. First, previously published studies focused on identifying barriers to shared decision-making and neglected decision support from physicians and patients. For instance, one study found that a lack of professionalism in health care providers is a barrier to shared decision-making, yet no studies have examined specific LCS shared decision-making decision supports for health care providers [ 19 ]. Second, current research centers on short-term decision-making experiences, such as cognitive consequences experienced immediately following shared decision-making. However, studies have not adequately addressed the complete shared decision-making process – pre-decisional needs, the decision-making process itself, and post-decision experiences, such as decision regret. Third, the COVID-19 pandemic has introduced a new risk of LDCT usage (exposure to the health-care environment) [ 20 ]. The added risk alters the benefit-risk ratio of LDCT under pre-COVID-19 guideline recommendations. Fourth, shared decision-making, developed in Western societies, is rarely discussed in China. The national climate and medical systems of China and Western countries differ greatly [ 21 ], and the lack of evidence on LCS shared decision-making in China indicates a need for an assessment of shared decision-making in those who require LDCT.

This study aimed to explore the decisional needs and decision support of shared decision-making for LCS among Chinese high-risk individuals and their health care providers using data collected through in-depth one-on-one interviews.

Theoretical framework

The Ottawa Decision-Support Framework (ODSF) is an evidence-based conceptual framework that is structured around three key components [ 22 ]: (1) assessing decisional needs, such as insufficient knowledge, complex decision types, and limited resources; (2) providing decision support, which encompasses clinical counseling, decision-making tools, and decision coaching; and (3) evaluating decisional outcomes, which includes assessing the quality of the decision-making process and its impact. According to the ODSF, successful decision support should be guided by an assessment of the individual’s knowledge and his/her ability to make his/her own decision to reduce their unmet needs and achieve a final health decision with the support of health care providers and family members. The ODSF has been successfully used within several populations with health needs to guide health decisions and provide decision support [ 23 , 24 ].

This qualitative study emphasizes the “who, what, and where” of events or experiences [ 25 ]. The central research question posed was, “What are the decisional needs and supports of LCS shared decision-making among individuals at high-risk of lung cancer and health care providers?” Consequently, a descriptive qualitative approach was deemed appropriate for exploring the decisional needs and supports for LCS shared decision-making among individuals at high-risk of lung cancer and health care providers [ 26 ]. This descriptive qualitative study adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist [ 27 ]. Ethical approval for this study was obtained from the ethics committee of Fujian Medical University (Approval No. 2,023,098).

Inclusion and exclusion criteria

Aligned with the guidelines for the early detection of lung cancer in China [ 14 ], the inclusion criteria used for the high-risk group for lung cancer were as follows: (a) aged between 50 and 74 years; (b) had at least one of the following risk factors for lung cancer: a smoking history ≥ 30 pack-years, which includes current smokers or individuals who quit smoking within the last 15 years; prolonged exposure to passive smoking (living or working with smokers for 20 years or more); a history of COPD; a history of occupational exposure to asbestos, radon, beryllium, chromium, cadmium, nickel, silicon, soot, or coal soot for a minimum of 1 year; or a family history of lung cancer; (c) verbal confirmation of undergoing LCS shared decision-making; (d) undergone LDCT within the past 5 years; (e) Able to converse in Mandarin; (f) absence of cognitive or psychological disorders; and (g) willingness to share their personal stories. The exclusion criteria used for the high-risk group for lung cancer were as follows: (a) previous history of lung cancer; and (b) cognitive or psychological disorders (such as depression and anxiety). The inclusion criteria used for health care providers were as follows: (a) certified physicians or nurses; (b) expertise in LCS; and (c) willingness to share their experiences. Healthcare providers who were receiving external training were excluded from participation in the study.

Qualitative data collection

The data were collected from March 2023 to May 2023. A purposive sampling method was used to identify and recruit individuals at high-risk for lung cancer, as well as local health care providers from five community healthcare centers and two surgical oncology departments of tertiary hospitals. Study flyers provided information on the purpose of the study and the inclusion and exclusion criteria and were distributed to potential participants on site. After participants expressed their interest in the study, they were screened for eligibility to participate and their informed consent was secured. Next, a one-on-one interview was scheduled and a questionnaire was completed by participants to obtain their demographic data (gender, age, residential area, smoking status, etc.). One-on-one interviews were conducted in Mandarin, digitally recorded, with study data stored on a passworded encrypted laptop. Each interview lasted approximately 20 to 40 min. A private room in the clinic was used for all the in-depth interviews.

The interview questions were formulated based on the ODSF and after a comprehensive literature review [ 28 ], with extensive discussions among researchers of the study (Feifei Huang, PhD, RN, Professor, specializing in lung cancer prevention and psycho-oncology; Weisheng Chen, MD, specializing in lung cancer prevention, diagnosis and treatment; and Wei-Ti Chen PhD, RN, CNM, FAAN, specializing in intervention design and qualitative data collection). To ensure the acceptability and credibility of the interview guide, the interview questions were pilot tested with four participants in total, including two health care providers and two individuals at high-risk of lung cancer. As a result, some misconceptions regarding the interview questions were identified and subsequently modified. For instance, we replaced the term “decision tools” with “patient decision aids” to help participants to better understand the posed questions. The final interview questions are outlined in Table 1 . Tables 2 and 3 summarize key demographic data collected on the high-risk individuals and health care providers, respectively.

The sample size was determined by data saturation, that is, recruitment ended at the point where no new themes emerged from the participants’ experiences [ 29 ]. Data saturation was reached at approximately the twenty-seventh in-depth interview with a high-risk lung cancer individual, with another three high-risk lung cancer individuals being interviewed to ensure that the data reached complete saturation. Data saturation was reached at approximately the seventh in-depth interview with healthcare providers, with another two healthcare providers interviewed to ensure data saturation.

Data analysis

Since the interviews were conducted in Mandarin, a bilingual coding technique was used to keep the data in the original Chinese format, and the coding assignments were in English (e.g., decision negotiation). To ensure accuracy and minimize potential translation errors, two bilingual researchers (Chinese and English) reviewed and confirmed the translations [ 30 ]. The process of data analysis began with data collection. To analyze the data, content analysis was guided by the ODSF and Nvivo software version 12 was used [ 31 ]. The classification of themes was performed both inductively (derived from the quotes of research participants) and deductively (derived from the ODSF theoretical framework) under the principle of complementarity. The detailed steps of the data analysis process are illustrated in Fig. 1 .

Directed content analysis flowchart

Trustworthiness

Credibility, dependability, confirmability and transferability were employed to assure the trustworthiness of this study’s findings [ 32 ]. To enhance credibility, the researcher dedicated ample time to establishing meaningful interactions with the participants, thereby building trust for effective data collection. Regarding dependability, two researchers cross-checked and rectified codes that did not precisely reflect participants’ perspectives. Furthermore, an audit trail and reflexivity techniques were used during the data analysis process, which included tracking the interview and data analysis notes and memos. To ensure confirmability, the supervisor reviewed and selected quotations, codes, and categories, thereby validating the accuracy of the coding process. In terms of transferability, participants were purposefully selected from both urban and rural areas to incorporate a wide range of perspectives. Herein, a comprehensive description of the entire research process is presented to facilitate reproducibility of the study.

Out of a total of 44 participants consented, five participants (4 high-risk individuals and 1 health care provider) dropped out of the study due to their busy schedules and lack of interest in participating. A total of 39 eligible volunteers composed the study sample. Among them, 30 individuals were classified as at high-risk for lung cancer with an average age of 61.27 ± 7.92 years, while nine health care providers had an average age of 36.78 ± 7.45 years. Five health care provider participants specialized in lung cancer prevention, diagnosis, and treatment, and four specialized in general medical education and community cancer screening education. Detailed demographic information on the participants can be found in Tables  2 and 3 .

A total of 546 unique codes related to LCS shared decision-making were identified. Following the framework of the ODSF, participants’ decisional needs and supports for shared decision-making were categorized (refer to Fig.  2 ; Table  4 ).

Participants’ viewpoints on shared decision-making based on ODSF

Decisional needs

We identified four categories related to the theme of decisional needs, including LCS knowledge deficits, inadequate supportive resources, shared decision-making conceptual bias, and delicate doctor-patient bonds.

Theme 1: LCS knowledge deficit

Many high-risk study participants expressed that they did not have access to reliable and authoritative medical information. Many of the high-risk participants shared their inability to access LCS-related information and their limited capacity to distinguish accurate LCS information from misinformation. Furthermore, participants mentioned that a negative personal view of life influenced their active engagement in shared decision-making with health care providers and/or family, which diminished their comprehensive understanding of LCS.

“Some people are negative, they believe God’s will can decide everything, so when they faced a decision, they will ask the gods instead of making a decision according to their actual situation” H13 (high-risk individual, female, 53 years-old).

Theme 2: inadequate supportive resources

Participants emphasized that shared decision-making was hindered by financial, transportation and time-related barriers to hospital visits. Furthermore, unfamiliarity with the process of seeking medical treatment also presented an obstacle to shared decision-making. Notably, participants expressed negative emotions related to the LDCT test which influenced their shared decision-making. In particular, the LDCT process was not well received by individuals who had claustrophobia. Participants described feeling claustrophobic during the process of the imagological examination. The requirement for patients to lie flat during the examination, combined with the confined and dim space, can lead to feelings of depression and suffocation. Additionally, the machine’s noise and concerns about potential risks (such as radiation and false positives) from having LDCT scans may have heightened patients’ negative emotions and fears.

“Since I smoke, I’m always scared of getting bad test results. If the results are bad, it’s just really scary, I don’t think I have the sanity to make shared decisions with my doctors. I need help.” H11 (a high-risk individual, female, 54 years-old).

“I struggle with claustrophobia, and every time I have a test, I feel really trapped. It would be difficult for me to have shared decision-making when I have a claustrophobia. It felt like my mind was blank.” H12 (a high-risk individual, male, 52 years-old).

Several participants mentioned experiencing anxiety regarding the test results. They expressed their apprehension about potential adverse outcomes and indicated that this anxiety affected their ability to engage in shared decision-making with their doctors. Moreover, after experiencing claustrophobia, some participants expressed that they felt an inability to make shared decisions with their doctors in a rational manner.

Theme 3: Shared decision-making conceptual bias

Some participants mentioned that they were not familiar with the specific term ‘shared decision-making’. Health care providers shared the perspective that excessive communication with the high-risk group about their condition might lead to a refusal of subsequent treatment, potentially jeopardizing their health.

“I believe that when it comes to professional matters, it’s best to rely on trained professionals. Most patients don’t have expert medical knowledge, and even if they do, they might be hesitant about certain exams. That, in my opinion, doesn’t do much good for their health.” M8 (a general practitioner, female, 36 years-old).

Additionally, participants had misconceptions about shared decision-making. For example, health care providers had misconceptions about shared decision-making in LDCT screenings – some believed that shared decision-making meant merely providing information about the benefits and risks of LDCT; others confused the concepts of informed consent and shared decision-making all together; and a few providers viewed encouraging high-risk groups to conduct LDCT screening to be a part of shared decision-making. Some participants believed shared decision-making to be merely a procedural step to schedule a test appointment.

“I think shared decision-making means thoroughly informing those in high-risk groups about the pros and cons of a particular exam and ultimately letting them make the call.” M5 (a physician specialist, male, 25 years-old).

“When we suggest undergoing a medical examination, doctors might assume that this visit is a necessary step for patients to get a chance to be examined, not a step for shared decision-making. As a result, they may believe that there’s no necessity for patient education.” H13 (a high-risk individual, female, 53 years-old).

Theme 4: delicate doctor-patient bonds

Both health care providers and high-risk individuals emphasized that time constraints pose a significant barrier to shared decision-making. Some participants noted that doctors, who often express concerns about work-related burnout, were hesitant to provide comprehensive information about LDCT.

“I believe that doctor burnout contributes to their reluctance to discuss lung cancer screening with patients.” H9 (a high-risk individual, male, 57 years-old).

Furthermore, health care providers and participants encountered challenges with communication. Health care providers struggled to simplify complex information for easy understanding, while participants had difficulty clearly expressing their needs.

“Effective communication is essential for both doctors and patients. The doctor’s ability to convey information and the patient’s capacity to express their needs are crucial. Insufficient communication skills represent a challenge for both parties.” M6 (a physician specialist, male, 27 years-old).

Participants also mentioned that they were hesitant to express their thoughts to doctors whom they do not know well.

“Building trust is not a simple task. When patients and I have a strong connection and they trust us enough to share their true thoughts, it significantly reduces barriers to shared decision-making. On the other hand, some doctors who aren’t deeply connected with the community may struggle to gain patients’ trust, leading to communication challenges that hinder shared decision-making.” M2 (a nurse in grade A tertiary hospital, female, 41 years-old).

Others believe that the professional competence of doctors plays a pivotal role in shared decision-making in LCS. People often opt for doctors from tertiary hospitals who were perceived to have a higher level of professionalism, which is conducive to shared decision-making.

“Personally, I believe that the expertise of doctors in county-level hospitals may not be as advanced, which affects my level of trust in them. I tend to find doctors in top-tier tertiary hospitals to be more credible.” H12 (a high-risk individual, male, 52 years-old).

Decision support

Three categories related to the theme of decision support were identified: provide information throughout the LCS process, providing a shared decision-making coach, and provide decision tools.

Theme 1: provide information throughout the LCS process

Participants shared that they would like to know information about LDCT before and after undergoing the screening test. Desired information prior to screening included: eligibility criteria for LCS; benefits and risks of LDCT, the LDCT process itself, primary and secondary prevention of lung cancer, the cost of LDCT, potential emergencies and appropriate responses during LDCT, guidelines for Medicare reimbursement related to LDCT, and the medical visit steps. Most participants wanted information after the screening to include the interpretation and monitoring of LDCT results as well as the recommended frequency of LDCT.

Theme 2: providing a shared decision-making decision coach

Several participants said that it is necessary to enhance shared decision-making beliefs to better support the decision-making process for LCS, which is inherently a preference-sensitive decision.

“In China, shared decision-making isn’t commonly practiced. Many physicians here may not be familiar with the concept, even though it’s something they should consider adopting. Personally, I strongly believe in the importance of implementing shared decision-making.” H6 (a high-risk individual, male, 58 years-old).

High-risk individuals emphasize the importance of establishing a foundation for knowledge before engaging in shared decision-making. Participants advocated for a basic understanding of medical concepts, with decision counselors possessing specialized medical expertise.

“Before participating in shared decision-making, I’d like to gain some basic medical knowledge.” H4 (a high-risk individual, female, 53 years-old).

Due to time and energy constraints, clinicians found it challenging to engage in shared decision-making. However, the community doctors in our study stated that they had more time to communicate and share opinions and that their closer patient-provider relationships could facilitate the shared decision-making process in China.

“We only present the benefit and harm of LDCT briefly. We don’t have enough time to describe these in more detail. You know, lung cancer pathology and knowledge of imaging are too complex for high-risk individuals of lung cancer. For individuals who don’t have professional backgrounds, it is impossible for them to understand totally, what we can do is try to get them to understand as much as possible in a limited time.” M5 (a doctor in grade A tertiary hospital, male, 25 years-old).

“It’s important to involve community health providers in shared decision-making for a couple of reasons. Firstly, we tend to establish a strong rapport with patients, and they often trust us more compared to clinicians. Additionally, we have the advantage of spending more time communicating with patients, which makes us better suited to facilitate shared decision-making.” M9 (a general practitioner, male, 42 years-old).

Theme 3: providing decision tools

Participants expressed the need for decision tools and made several suggestions for decision tools to better cater to diverse groups. Decision tools are instruments that aid users in clarifying the congruence between their decisions and their individual values by presenting relevant options along with their associated benefits and potential drawbacks. Through the use of decision tools, users are assisted in arriving at clear, high-quality decisions.

The participants had several suggestions for providing decision tools. First, various information modalities such as videos, images, and written content should be integrated into tools to accommodate varying education levels and preferences. Second, tailored information that aligns with LCS decision-making is preferred. Third, a three-way interaction model involving patients, decision tools, and health care providers could enhance effectiveness. Fourth, medical knowledge should be presented in a comprehensible manner to improve accessibility. Additionally, access to more detailed information is necessary. Fifth, the time spent using decision tools should be less than 20 min to prevent impatience. Sixth, most participants emphasized addressing credibility concerns, through incorporating medical professionals into the tool’s development team, emphasizing authoritative sources, and involving experts from reputable hospitals. Finally, most participants acknowledged that value clarification exercises should be integrated to help users articulate their personal screening preferences to ensure a comprehensive approach to decision support.

Shared decision-making plays a crucial role in enhancing the understanding of LCS and LDCT in high-risk groups. Shared decision-making can also establish realistic expectations for health outcomes and ultimately improve decision-making for the best treatment or screening option [ 33 ]. This qualitative study provides insights into the decisional needs and necessary support for shared decision-making in LDCT screening, from the perspectives of health care providers and high-risk individuals in China. Specifically, LDCT screening decisions should evaluate the knowledge, availability of supportive resources, health care providers’ understanding of shared decision-making concepts, and quality of doctor-patient relationships. At present, both providers and screeners require decision support surrounding LDCT information and need shared decision-making coaching to effectively arrive at a decision. This study finding is valuable for shaping the design of future interventions that aim to facilitate decision-making and has the potential to increase the use of LDCT screening in Chinese society.

Our findings also contribute to the classification refinement of the ODSF. Regarding LCS knowledge, we have observed that high-risk groups not only lack specific knowledge of LCS, but also face challenges accessing relevant information and struggle with their capacity to distinguish accurate LCS information from misinformation. Previous multimodel public health interventions have focused on education related to specific LCS knowledge and ignored the need to access correct information, insufficiently addressing the needs of populations at high-risk of lung cancer [ 34 ]. Therefore, in addition to limited knowledge, limited access to information and lack of identification undermine the contributions of high-risk groups in shared decision-making.

In terms of support and resources, it is essential to consider not only conventional limitations such as financial and health system resources, but also the psychological well-being of high-risk populations. The proportion of smokers is greater among those at high-risk for lung cancer than among those at high-risk for other types of cancers (such as breast cancer and colorectal cancer) [ 35 ]. Being a smoker can affect the execution of shared decision-making due to perceived stigma, lung cancer fatalism, and heightened levels of worry and fear of contracting lung cancer [ 35 ]. Additionally, concerns about potential risks associated with LDCT serve as a barrier to the shared decision-making process with health care providers [ 9 ].

Our findings provide new insights into the core constructs of decisional needs, including awareness of shared decision-making and doctor-patient bonds. Additionally, shared decision-making awareness studies have demonstrated that bias can lead to differences in individual preferences, which can hinder the initiation of shared decision-making and result in higher levels of decision conflict [ 36 ]. Additionally, studies have shown that poor doctor-patient communication can lead to low-quality shared decision-making. For example, dismissive clinicians who dominate decision-making encounters, use negative verbal or nonverbal cues, or fail to respect patients’ concerns have been shown to act as barriers to shared decision-making for many patients [ 37 ]. Conversely, clinicians who strive to understand individual needs and preferences can foster a sense of partnership and facilitate their involvement in shared decision-making processes [ 38 ]. It has also been found that allocating limited time for consultations as well as poor communication skills results in ineffective shared decision-making [ 39 ]. Limitations in skill and time can impede the ability to be fully informed by health care providers, to process and reflect on the information received, and to engage in meaningful discussions between providers and individuals [ 37 ]. Furthermore, the presence of trust is identified as a facilitator of shared decision-making. Establishing a trusting relationship with health care providers encourages patients to feel more comfortable asking questions, sharing personal information, and discussing their concerns [ 39 ].

Currently, the use of shared decision-making in clinical practice is suboptimal in China [ 11 ]. Fortunately, our study provides potential mitigation strategies. First, the need for comprehensive decision tools that appeal to diverse groups of patients was emphasized by both high-risk groups and health providers. A decision tool can furnish information, facilitate patient-doctor dialog, and enhance therapeutic outcomes [ 33 ]. However, the availability of decision tools for LCS is limited and their applications are less than ideal, partly due to their failure to be tailored to personal needs. For instance, most LCS decision tools are presented as single-page materials or premade videos, which may not fully address participants’ needs. Our findings highlight the demand for personalized decision tools for LCS in China. Second, some participants suggested that decision counselors should not be limited solely to clinicians; community health care providers can also serve as counselors for decision-making. This aligns with the concept that shared decision-making requires multisectoral collaboration [ 40 ]. Community nurses in particular, share similar ethnic, linguistic, and geographic backgrounds with the residents they serve compared to other nurses. Consequently, they are more likely to encounter high-risk populations in the community [ 41 ]. Additionally, due to the nature of their work, they have more time to engage in shared decision-making discussions with high-risk groups. Research has revealed that community nurses, in their roles as coordinators, educators, researchers, navigators, and practitioners, can play multidimensional roles essential for leading successful LCS [ 42 ]. Hence, future research should actively promote the development of community nurses as counsellors for LCS to alleviate the burden on hospital-based physicians. Third, both health care providers and high-risk groups should receive education on shared decision-making. Our findings reveal that both sides still possess a vague understanding of shared decision-making, often conflating it with informed consent (patient-led) and paternalism (physician-led) models. Unlike in Western countries, humanistic medicine education in China is lacking, resulting in an inadequate grasp of patient-centered medical-ethical principles among health providers and patients [ 21 ]. Future interventions in China should emphasize humanistic medicine to establish the foundation of shared decision-making.

Our findings are rooted in Chinese culture, which, along with broader Asian cultural influences, places a significant emphasis on Confucianism and sociocultural values such as family support, care, and respect for familial hierarchy and authority [ 43 ]. Therefore, the insights provided by this paper may be applicable to other Asian countries. Despite the rapid development of SDM research in the West, the actual implementation of SDM in clinical practice is not as favorable [ 44 ]. One contributing factor is that highly developed patient decision aids often overly focus on standardized processes, deviating from a more humanistic approach that can be applied universally [ 44 ]. Moreover, the ongoing wave of globalization has resulted in increasingly multicultural societies, necessitating a broader scope of SDM coverage that includes individuals from diverse cultural backgrounds. Therefore, avoiding cultural stereotypes and actively inquiring about patients’ preferences become especially crucial. The results of our study contribute valuable insights into individual decisional needs and decision support from the perspectives of both individuals at high-risk for lung cancer and health care providers. These perspectives can assist patient decision aids in avoiding excessive standardization. Simultaneously, the perspective embedded in our findings is well-suited to accommodate the multicultural nature of Western countries. Future studies should seek to bridge the gap in SDM between Eastern and Western contexts.

Limitations

There are several limitations in this study. First, since the high-risk lung cancer individuals in our study did not undergo LCS shared decision-making recently, their views on LCS shared decision-making may have been subject to recall bias. Second, all study participants were from Fujian Province, which is a southeastern province in China. It is possible that recruitment from a broader geographical area may have led to a wider range of perspectives and experiences and thus influenced the point at which data saturation was reached. Third, as a qualitative, in-depth interview study, generalizations of findings to a larger population are not possible. Future quantitative studies should explore decision-making experiences among a broad range of high-risk groups and health care providers in China to enhance data triangulation and thus, the credibility and reliability of the study’s findings.

Guiding high-risk groups toward well-informed choices regarding LCS represents a substantial gain toward advancing secondary prevention of lung cancer. This descriptive qualitative study offers valuable insights into decision-making regarding LDCT screening among Chinese high-risk groups and their health care providers. The findings from this study highlight the decisional needs and decision support for shared decision-making for LCS using the ODSF conceptual framework. Future studies should target intervention development to offer decision support by evaluating individuals’ decisional needs, enabling them to make choices confidently, and with minimal conflict and decisional regret. In addition, this study may also serve as a starting point for the development of more effective decision tools for LDCT screening.

Availability of data and materials

The de-identified datasets used and/or analysed during the current study available from the corresponding author on reasonable request.

Abbreviations

Low-dose computed tomography

Lung cancer screening

The Ottawa Decision-Support Framework

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Acknowledgements

The authors are grateful to all the participants in this study.

This work was supported by the National Natural Science Foundation of China [grant number 72304068] and the General Project of Fujian Provincial Nature Science Foundation (grant number 2021J01133126).

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Weisheng Chen

School of Nursing, University of California Los Angeles, Los Angeles, CA, 90095, USA

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XJL had full access to all of the data and takes responsibility for the integrity of the data and the accuracy of the data analysis. FFW and YLL contributed to the study design, data collection, data analysis and interpretation, and writing of the manuscript. FL. and WSC contributed to the recruitment, data collection and interpretation, and writing of the manuscript. WTC contributed to the study design, coordination, interpretation, and writing of the manuscript. FFH contributed to the overall study design, interpretation, and writing of the manuscript. All authors approved the final version of the manuscript.

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Correspondence to Wei-Ti Chen or Feifei Huang .

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Lin, X., Wang, F., Li, Y. et al. Exploring shared decision-making needs in lung cancer screening among high-risk groups and health care providers in China: a qualitative study. BMC Cancer 24 , 613 (2024). https://doi.org/10.1186/s12885-024-12360-0

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Received : 13 January 2024

Accepted : 08 May 2024

Published : 21 May 2024

DOI : https://doi.org/10.1186/s12885-024-12360-0

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