thematic analysis of literature review

• Research article
• Open access
• Published: 10 July 2008

Methods for the thematic synthesis of qualitative research in systematic reviews

• James Thomas 1 &
• Angela Harden 1  

BMC Medical Research Methodology volume  8 , Article number:  45 ( 2008 ) Cite this article

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There is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies.

We describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved.

We used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses.

We compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.

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The systematic review is an important technology for the evidence-informed policy and practice movement, which aims to bring research closer to decision-making [ 1 , 2 ]. This type of review uses rigorous and explicit methods to bring together the results of primary research in order to provide reliable answers to particular questions [ 3 – 6 ]. The picture that is presented aims to be distorted neither by biases in the review process nor by biases in the primary research which the review contains [ 7 – 10 ]. Systematic review methods are well-developed for certain types of research, such as randomised controlled trials (RCTs). Methods for reviewing qualitative research in a systematic way are still emerging, and there is much ongoing development and debate [ 11 – 14 ].

In this paper we present one approach to the synthesis of findings of qualitative research, which we have called 'thematic synthesis'. We have developed and applied these methods within several systematic reviews that address questions about people's perspectives and experiences [ 15 – 18 ]. The context for this methodological development is a programme of work in health promotion and public health (HP & PH), mostly funded by the English Department of Health, at the EPPI-Centre, in the Social Science Research Unit at the Institute of Education, University of London in the UK. Early systematic reviews at the EPPI-Centre addressed the question 'what works?' and contained research testing the effects of interventions. However, policy makers and other review users also posed questions about intervention need, appropriateness and acceptability, and factors influencing intervention implementation. To address these questions, our reviews began to include a wider range of research, including research often described as 'qualitative'. We began to focus, in particular, on research that aimed to understand the health issue in question from the experiences and point of view of the groups of people targeted by HP&PH interventions (We use the term 'qualitative' research cautiously because it encompasses a multitude of research methods at the same time as an assumed range of epistemological positions. In practice it is often difficult to classify research as being either 'qualitative' or 'quantitative' as much research contains aspects of both [ 19 – 22 ]. Because the term is in common use, however, we will employ it in this paper).

When we started the work for our first series of reviews which included qualitative research in 1999 [ 23 – 26 ], there was very little published material that described methods for synthesising this type of research. We therefore experimented with a variety of techniques borrowed from standard systematic review methods and methods for analysing primary qualitative research [ 15 ]. In later reviews, we were able to refine these methods and began to apply thematic analysis in a more explicit way. The methods for thematic synthesis described in this paper have so far been used explicitly in three systematic reviews [ 16 – 18 ].

The review used as an example in this paper

To illustrate the steps involved in a thematic synthesis we draw on a review of the barriers to, and facilitators of, healthy eating amongst children aged four to 10 years old [ 17 ]. The review was commissioned by the Department of Health, England to inform policy about how to encourage children to eat healthily in the light of recent surveys highlighting that British children are eating less than half the recommended five portions of fruit and vegetables per day. While we focus on the aspects of the review that relate to qualitative studies, the review was broader than this and combined answering traditional questions of effectiveness, through reviewing controlled trials, with questions relating to children's views of healthy eating, which were answered using qualitative studies. The qualitative studies were synthesised using 'thematic synthesis' – the subject of this paper. We compared the effectiveness of interventions which appeared to be in line with recommendations from the thematic synthesis with those that did not. This enabled us to see whether the understandings we had gained from the children's views helped us to explain differences in the effectiveness of different interventions: the thematic synthesis had enabled us to generate hypotheses which could be tested against the findings of the quantitative studies – hypotheses that we could not have generated without the thematic synthesis. The methods of this part of the review are published in Thomas et al . [ 27 ] and are discussed further in Harden and Thomas [ 21 ].

Qualitative research and systematic reviews

The act of seeking to synthesise qualitative research means stepping into more complex and contested territory than is the case when only RCTs are included in a review. First, methods are much less developed in this area, with fewer completed reviews available from which to learn, and second, the whole enterprise of synthesising qualitative research is itself hotly debated. Qualitative research, it is often proposed, is not generalisable and is specific to a particular context, time and group of participants. Thus, in bringing such research together, reviewers are open to the charge that they de-contextualise findings and wrongly assume that these are commensurable [ 11 , 13 ]. These are serious concerns which it is not the purpose of this paper to contest. We note, however, that a strong case has been made for qualitative research to be valued for the potential it has to inform policy and practice [ 11 , 28 – 30 ]. In our experience, users of reviews are interested in the answers that only qualitative research can provide, but are not able to handle the deluge of data that would result if they tried to locate, read and interpret all the relevant research themselves. Thus, if we acknowledge the unique importance of qualitative research, we need also to recognise that methods are required to bring its findings together for a wide audience – at the same time as preserving and respecting its essential context and complexity.

The earliest published work that we know of that deals with methods for synthesising qualitative research was written in 1988 by Noblit and Hare [ 31 ]. This book describes the way that ethnographic research might be synthesised, but the method has been shown to be applicable to qualitative research beyond ethnography [ 32 , 11 ]. As well as meta-ethnography, other methods have been developed more recently, including 'meta-study' [ 33 ], 'critical interpretive synthesis' [ 34 ] and 'metasynthesis' [ 13 ].

Many of the newer methods being developed have much in common with meta-ethnography, as originally described by Noblit and Hare, and often state explicitly that they are drawing on this work. In essence, this method involves identifying key concepts from studies and translating them into one another. The term 'translating' in this context refers to the process of taking concepts from one study and recognising the same concepts in another study, though they may not be expressed using identical words. Explanations or theories associated with these concepts are also extracted and a 'line of argument' may be developed, pulling corroborating concepts together and, crucially, going beyond the content of the original studies (though 'refutational' concepts might not be amenable to this process). Some have claimed that this notion of 'going beyond' the primary studies is a critical component of synthesis, and is what distinguishes it from the types of summaries of findings that typify traditional literature reviews [e.g. [ 32 ], p209]. In the words of Margarete Sandelowski, "metasyntheses are integrations that are more than the sum of parts, in that they offer novel interpretations of findings. These interpretations will not be found in any one research report but, rather, are inferences derived from taking all of the reports in a sample as a whole" [[ 14 ], p1358].

Thematic analysis has been identified as one of a range of potential methods for research synthesis alongside meta-ethnography and 'metasynthesis', though precisely what the method involves is unclear, and there are few examples of it being used for synthesising research [ 35 ]. We have adopted the term 'thematic synthesis', as we translated methods for the analysis of primary research – often termed 'thematic' – for use in systematic reviews [ 36 – 38 ]. As Boyatzis [[ 36 ], p4] has observed, thematic analysis is "not another qualitative method but a process that can be used with most, if not all, qualitative methods..." . Our approach concurs with this conceptualisation of thematic analysis, since the method we employed draws on other established methods but uses techniques commonly described as 'thematic analysis' in order to formalise the identification and development of themes.

We now move to a description of the methods we used in our example systematic review. While this paper has the traditional structure for reporting the results of a research project, the detailed methods (e.g. precise terms we used for searching) and results are available online. This paper identifies the particular issues that relate especially to reviewing qualitative research systematically and then to describing the activity of thematic synthesis in detail.

When searching for studies for inclusion in a 'traditional' statistical meta-analysis, the aim of searching is to locate all relevant studies. Failing to do this can undermine the statistical models that underpin the analysis and bias the results. However, Doyle [[ 39 ], p326] states that, "like meta-analysis, meta-ethnography utilizes multiple empirical studies but, unlike meta-analysis, the sample is purposive rather than exhaustive because the purpose is interpretive explanation and not prediction" . This suggests that it may not be necessary to locate every available study because, for example, the results of a conceptual synthesis will not change if ten rather than five studies contain the same concept, but will depend on the range of concepts found in the studies, their context, and whether they are in agreement or not. Thus, principles such as aiming for 'conceptual saturation' might be more appropriate when planning a search strategy for qualitative research, although it is not yet clear how these principles can be applied in practice. Similarly, other principles from primary qualitative research methods may also be 'borrowed' such as deliberately seeking studies which might act as negative cases, aiming for maximum variability and, in essence, designing the resulting set of studies to be heterogeneous, in some ways, instead of achieving the homogeneity that is often the aim in statistical meta-analyses.

However you look, qualitative research is difficult to find [ 40 – 42 ]. In our review, it was not possible to rely on simple electronic searches of databases. We needed to search extensively in 'grey' literature, ask authors of relevant papers if they knew of more studies, and look especially for book chapters, and we spent a lot of effort screening titles and abstracts by hand and looking through journals manually. In this sense, while we were not driven by the statistical imperative of locating every relevant study, when it actually came down to searching, we found that there was very little difference in the methods we had to use to find qualitative studies compared to the methods we use when searching for studies for inclusion in a meta-analysis.

Quality assessment

Assessing the quality of qualitative research has attracted much debate and there is little consensus regarding how quality should be assessed, who should assess quality, and, indeed, whether quality can or should be assessed in relation to 'qualitative' research at all [ 43 , 22 , 44 , 45 ]. We take the view that the quality of qualitative research should be assessed to avoid drawing unreliable conclusions. However, since there is little empirical evidence on which to base decisions for excluding studies based on quality assessment, we took the approach in this review to use 'sensitivity analyses' (described below) to assess the possible impact of study quality on the review's findings.

In our example review we assessed our studies according to 12 criteria, which were derived from existing sets of criteria proposed for assessing the quality of qualitative research [ 46 – 49 ], principles of good practice for conducting social research with children [ 50 ], and whether studies employed appropriate methods for addressing our review questions. The 12 criteria covered three main quality issues. Five related to the quality of the reporting of a study's aims, context, rationale, methods and findings (e.g. was there an adequate description of the sample used and the methods for how the sample was selected and recruited?). A further four criteria related to the sufficiency of the strategies employed to establish the reliability and validity of data collection tools and methods of analysis, and hence the validity of the findings. The final three criteria related to the assessment of the appropriateness of the study methods for ensuring that findings about the barriers to, and facilitators of, healthy eating were rooted in children's own perspectives (e.g. were data collection methods appropriate for helping children to express their views?).

Extracting data from studies

One issue which is difficult to deal with when synthesising 'qualitative' studies is 'what counts as data' or 'findings'? This problem is easily addressed when a statistical meta-analysis is being conducted: the numeric results of RCTs – for example, the mean difference in outcome between the intervention and control – are taken from published reports and are entered into the software package being used to calculate the pooled effect size [ 3 , 51 ].

Deciding what to abstract from the published report of a 'qualitative' study is much more difficult. Campbell et al . [ 11 ] extracted what they called the 'key concepts' from the qualitative studies they found about patients' experiences of diabetes and diabetes care. However, finding the key concepts in 'qualitative' research is not always straightforward either. As Sandelowski and Barroso [ 52 ] discovered, identifying the findings in qualitative research can be complicated by varied reporting styles or the misrepresentation of data as findings (as for example when data are used to 'let participants speak for themselves'). Sandelowski and Barroso [ 53 ] have argued that the findings of qualitative (and, indeed, all empirical) research are distinct from the data upon which they are based, the methods used to derive them, externally sourced data, and researchers' conclusions and implications.

In our example review, while it was relatively easy to identify 'data' in the studies – usually in the form of quotations from the children themselves – it was often difficult to identify key concepts or succinct summaries of findings, especially for studies that had undertaken relatively simple analyses and had not gone much further than describing and summarising what the children had said. To resolve this problem we took study findings to be all of the text labelled as 'results' or 'findings' in study reports – though we also found 'findings' in the abstracts which were not always reported in the same way in the text. Study reports ranged in size from a few pages to full final project reports. We entered all the results of the studies verbatim into QSR's NVivo software for qualitative data analysis. Where we had the documents in electronic form this process was straightforward even for large amounts of text. When electronic versions were not available, the results sections were either re-typed or scanned in using a flat-bed or pen scanner. (We have since adapted our own reviewing system, 'EPPI-Reviewer' [ 54 ], to handle this type of synthesis and the screenshots below show this software.)

Detailed methods for thematic synthesis

The synthesis took the form of three stages which overlapped to some degree: the free line-by-line coding of the findings of primary studies; the organisation of these 'free codes' into related areas to construct 'descriptive' themes; and the development of 'analytical' themes.

Stages one and two: coding text and developing descriptive themes

In our children and healthy eating review, we originally planned to extract and synthesise study findings according to our review questions regarding the barriers to, and facilitators of, healthy eating amongst children. It soon became apparent, however, that few study findings addressed these questions directly and it appeared that we were in danger of ending up with an empty synthesis. We were also concerned about imposing the a priori framework implied by our review questions onto study findings without allowing for the possibility that a different or modified framework may be a better fit. We therefore temporarily put our review questions to one side and started from the study findings themselves to conduct an thematic analysis.

There were eight relevant qualitative studies examining children's views of healthy eating. We entered the verbatim findings of these studies into our database. Three reviewers then independently coded each line of text according to its meaning and content. Figure 1 illustrates this line-by-line coding using our specialist reviewing software, EPPI-Reviewer, which includes a component designed to support thematic synthesis. The text which was taken from the report of the primary study is on the left and codes were created inductively to capture the meaning and content of each sentence. Codes could be structured, either in a tree form (as shown in the figure) or as 'free' codes – without a hierarchical structure.

line-by-line coding in EPPI-Reviewer.

The use of line-by-line coding enabled us to undertake what has been described as one of the key tasks in the synthesis of qualitative research: the translation of concepts from one study to another [ 32 , 55 ]. However, this process may not be regarded as a simple one of translation. As we coded each new study we added to our 'bank' of codes and developed new ones when necessary. As well as translating concepts between studies, we had already begun the process of synthesis (For another account of this process, see Doyle [[ 39 ], p331]). Every sentence had at least one code applied, and most were categorised using several codes (e.g. 'children prefer fruit to vegetables' or 'why eat healthily?'). Before completing this stage of the synthesis, we also examined all the text which had a given code applied to check consistency of interpretation and to see whether additional levels of coding were needed. (In grounded theory this is termed 'axial' coding; see Fisher [ 55 ] for further discussion of the application of axial coding in research synthesis.) This process created a total of 36 initial codes. For example, some of the text we coded as "bad food = nice, good food = awful" from one study [ 56 ] were:

'All the things that are bad for you are nice and all the things that are good for you are awful.' (Boys, year 6) [[ 56 ], p74]

'All adverts for healthy stuff go on about healthy things. The adverts for unhealthy things tell you how nice they taste.' [[ 56 ], p75]

Some children reported throwing away foods they knew had been put in because they were 'good for you' and only ate the crisps and chocolate . [[ 56 ], p75]

Reviewers looked for similarities and differences between the codes in order to start grouping them into a hierarchical tree structure. New codes were created to capture the meaning of groups of initial codes. This process resulted in a tree structure with several layers to organize a total of 12 descriptive themes (Figure 2 ). For example, the first layer divided the 12 themes into whether they were concerned with children's understandings of healthy eating or influences on children's food choice. The above example, about children's preferences for food, was placed in both areas, since the findings related both to children's reactions to the foods they were given, and to how they behaved when given the choice over what foods they might eat. A draft summary of the findings across the studies organized by the 12 descriptive themes was then written by one of the review authors. Two other review authors commented on this draft and a final version was agreed.

relationships between descriptive themes.

Stage three: generating analytical themes

Up until this point, we had produced a synthesis which kept very close to the original findings of the included studies. The findings of each study had been combined into a whole via a listing of themes which described children's perspectives on healthy eating. However, we did not yet have a synthesis product that addressed directly the concerns of our review – regarding how to promote healthy eating, in particular fruit and vegetable intake, amongst children. Neither had we 'gone beyond' the findings of the primary studies and generated additional concepts, understandings or hypotheses. As noted earlier, the idea or step of 'going beyond' the content of the original studies has been identified by some as the defining characteristic of synthesis [ 32 , 14 ].

This stage of a qualitative synthesis is the most difficult to describe and is, potentially, the most controversial, since it is dependent on the judgement and insights of the reviewers. The equivalent stage in meta-ethnography is the development of 'third order interpretations' which go beyond the content of original studies [ 32 , 11 ]. In our example, the step of 'going beyond' the content of the original studies was achieved by using the descriptive themes that emerged from our inductive analysis of study findings to answer the review questions we had temporarily put to one side. Reviewers inferred barriers and facilitators from the views children were expressing about healthy eating or food in general, captured by the descriptive themes, and then considered the implications of children's views for intervention development. Each reviewer first did this independently and then as a group. Through this discussion more abstract or analytical themes began to emerge. The barriers and facilitators and implications for intervention development were examined again in light of these themes and changes made as necessary. This cyclical process was repeated until the new themes were sufficiently abstract to describe and/or explain all of our initial descriptive themes, our inferred barriers and facilitators and implications for intervention development.

For example, five of the 12 descriptive themes concerned the influences on children's choice of foods (food preferences, perceptions of health benefits, knowledge behaviour gap, roles and responsibilities, non-influencing factors). From these, reviewers inferred several barriers and implications for intervention development. Children identified readily that taste was the major concern for them when selecting food and that health was either a secondary factor or, in some cases, a reason for rejecting food. Children also felt that buying healthy food was not a legitimate use of their pocket money, which they would use to buy sweets that could be enjoyed with friends. These perspectives indicated to us that branding fruit and vegetables as a 'tasty' rather than 'healthy' might be more effective in increasing consumption. As one child noted astutely, 'All adverts for healthy stuff go on about healthy things. The adverts for unhealthy things tell you how nice they taste.' [[ 56 ], p75]. We captured this line of argument in the analytical theme entitled 'Children do not see it as their role to be interested in health'. Altogether, this process resulted in the generation of six analytical themes which were associated with ten recommendations for interventions.

Six main issues emerged from the studies of children's views: (1) children do not see it as their role to be interested in health; (2) children do not see messages about future health as personally relevant or credible; (3) fruit, vegetables and confectionery have very different meanings for children; (4) children actively seek ways to exercise their own choices with regard to food; (5) children value eating as a social occasion; and (6) children see the contradiction between what is promoted in theory and what adults provide in practice. The review found that most interventions were based in school (though frequently with parental involvement) and often combined learning about the health benefits of fruit and vegetables with 'hands-on' experience in the form of food preparation and taste-testing. Interventions targeted at people with particular risk factors worked better than others, and multi-component interventions that combined the promotion of physical activity with healthy eating did not work as well as those that only concentrated on healthy eating. The studies of children's views suggested that fruit and vegetables should be treated in different ways in interventions, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective than those which were not.

Context and rigour in thematic synthesis

The process of translation, through the development of descriptive and analytical themes, can be carried out in a rigorous way that facilitates transparency of reporting. Since we aim to produce a synthesis that both generates 'abstract and formal theories' that are nevertheless 'empirically faithful to the cases from which they were developed' [[ 53 ], p1371], we see the explicit recording of the development of themes as being central to the method. The use of software as described can facilitate this by allowing reviewers to examine the contribution made to their findings by individual studies, groups of studies, or sub-populations within studies.

Some may argue against the synthesis of qualitative research on the grounds that the findings of individual studies are de-contextualised and that concepts identified in one setting are not applicable to others [ 32 ]. However, the act of synthesis could be viewed as similar to the role of a research user when reading a piece of qualitative research and deciding how useful it is to their own situation. In the case of synthesis, reviewers translate themes and concepts from one situation to another and can always be checking that each transfer is valid and whether there are any reasons that understandings gained in one context might not be transferred to another. We attempted to preserve context by providing structured summaries of each study detailing aims, methods and methodological quality, and setting and sample. This meant that readers of our review were able to judge for themselves whether or not the contexts of the studies the review contained were similar to their own. In the synthesis we also checked whether the emerging findings really were transferable across different study contexts. For example, we tried throughout the synthesis to distinguish between participants (e.g. boys and girls) where the primary research had made an appropriate distinction. We then looked to see whether some of our synthesis findings could be attributed to a particular group of children or setting. In the event, we did not find any themes that belonged to a specific group, but another outcome of this process was a realisation that the contextual information given in the reports of studies was very restricted indeed. It was therefore difficult to make the best use of context in our synthesis.

In checking that we were not translating concepts into situations where they did not belong, we were following a principle that others have followed when using synthesis methods to build grounded formal theory: that of grounding a text in the context in which it was constructed. As Margaret Kearney has noted "the conditions under which data were collected, analysis was done, findings were found, and products were written for each contributing report should be taken into consideration in developing a more generalized and abstract model" [[ 14 ], p1353]. Britten et al . [ 32 ] suggest that it may be important to make a deliberate attempt to include studies conducted across diverse settings to achieve the higher level of abstraction that is aimed for in a meta-ethnography.

Study quality and sensitivity analyses

We assessed the 'quality' of our studies with regard to the degree to which they represented the views of their participants. In doing this, we were locating the concept of 'quality' within the context of the purpose of our review – children's views – and not necessarily the context of the primary studies themselves. Our 'hierarchy of evidence', therefore, did not prioritise the research design of studies but emphasised the ability of the studies to answer our review question. A traditional systematic review of controlled trials would contain a quality assessment stage, the purpose of which is to exclude studies that do not provide a reliable answer to the review question. However, given that there were no accepted – or empirically tested – methods for excluding qualitative studies from syntheses on the basis of their quality [ 57 , 12 , 58 ], we included all studies regardless of their quality.

Nevertheless, our studies did differ according to the quality criteria they were assessed against and it was important that we considered this in some way. In systematic reviews of trials, 'sensitivity analyses' – analyses which test the effect on the synthesis of including and excluding findings from studies of differing quality – are often carried out. Dixon-Woods et al . [ 12 ] suggest that assessing the feasibility and worth of conducting sensitivity analyses within syntheses of qualitative research should be an important focus of synthesis methods work. After our thematic synthesis was complete, we examined the relative contributions of studies to our final analytic themes and recommendations for interventions. We found that the poorer quality studies contributed comparatively little to the synthesis and did not contain many unique themes; the better studies, on the other hand, appeared to have more developed analyses and contributed most to the synthesis.

This paper has discussed the rationale for reviewing and synthesising qualitative research in a systematic way and has outlined one specific approach for doing this: thematic synthesis. While it is not the only method which might be used – and we have discussed some of the other options available – we present it here as a tested technique that has worked in the systematic reviews in which it has been employed.

We have observed that one of the key tasks in the synthesis of qualitative research is the translation of concepts between studies. While the activity of translating concepts is usually undertaken in the few syntheses of qualitative research that exist, there are few examples that specify the detail of how this translation is actually carried out. The example above shows how we achieved the translation of concepts across studies through the use of line-by-line coding, the organisation of these codes into descriptive themes, and the generation of analytical themes through the application of a higher level theoretical framework. This paper therefore also demonstrates how the methods and process of a thematic synthesis can be written up in a transparent way.

This paper goes some way to addressing concerns regarding the use of thematic analysis in research synthesis raised by Dixon-Woods and colleagues who argue that the approach can lack transparency due to a failure to distinguish between 'data-driven' or 'theory-driven' approaches. Moreover they suggest that, "if thematic analysis is limited to summarising themes reported in primary studies, it offers little by way of theoretical structure within which to develop higher order thematic categories..." [[ 35 ], p47]. Part of the problem, they observe, is that the precise methods of thematic synthesis are unclear. Our approach contains a clear separation between the 'data-driven' descriptive themes and the 'theory-driven' analytical themes and demonstrates how the review questions provided a theoretical structure within which it became possible to develop higher order thematic categories.

The theme of 'going beyond' the content of the primary studies was discussed earlier. Citing Strike and Posner [ 59 ], Campbell et al . [[ 11 ], p672] also suggest that synthesis "involves some degree of conceptual innovation, or employment of concepts not found in the characterisation of the parts and a means of creating the whole" . This was certainly true of the example given in this paper. We used a series of questions, derived from the main topic of our review, to focus an examination of our descriptive themes and we do not find our recommendations for interventions contained in the findings of the primary studies: these were new propositions generated by the reviewers in the light of the synthesis. The method also demonstrates that it is possible to synthesise without conceptual innovation. The initial synthesis, involving the translation of concepts between studies, was necessary in order for conceptual innovation to begin. One could argue that the conceptual innovation, in this case, was only necessary because the primary studies did not address our review question directly. In situations in which the primary studies are concerned directly with the review question, it may not be necessary to go beyond the contents of the original studies in order to produce a satisfactory synthesis (see, for example, Marston and King, [ 60 ]). Conceptually, our analytical themes are similar to the ultimate product of meta-ethnographies: third order interpretations [ 11 ], since both are explicit mechanisms for going beyond the content of the primary studies and presenting this in a transparent way. The main difference between them lies in their purposes. Third order interpretations bring together the implications of translating studies into one another in their own terms, whereas analytical themes are the result of interrogating a descriptive synthesis by placing it within an external theoretical framework (our review question and sub-questions). It may be, therefore, that analytical themes are more appropriate when a specific review question is being addressed (as often occurs when informing policy and practice), and third order interpretations should be used when a body of literature is being explored in and of itself, with broader, or emergent, review questions.

This paper is a contribution to the current developmental work taking place in understanding how best to bring together the findings of qualitative research to inform policy and practice. It is by no means the only method on offer but, by drawing on methods and principles from qualitative primary research, it benefits from the years of methodological development that underpins the research it seeks to synthesise.

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Acknowledgements

The authors would like to thank Elaine Barnett-Page for her assistance in producing the draft paper, and David Gough, Ann Oakley and Sandy Oliver for their helpful comments. The review used an example in this paper was funded by the Department of Health (England). The methodological development was supported by Department of Health (England) and the ESRC through the Methods for Research Synthesis Node of the National Centre for Research Methods. In addition, Angela Harden held a senior research fellowship funded by the Department of Health (England) December 2003 – November 2007. The views expressed in this paper are those of the authors and are not necessarily those of the funding bodies.

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PY2106: Human Development Across the Lifespan Guide: Writing a Thematic Analysis

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What is a thematic analysis?

A thematic analysis is used in qualitative research to focus on examining themes within a topic by identifying, analysing and reporting patterns (themes) within the research topic. It is similar to a literature review, which is a critical survey and assessment of the existing research on your particular topic.

The following links provide more information about the thematic analysis process.

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• Using thematic analysis in psychology

Thematic Analysis Process

Writing a literature review

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This step-by-step handbook provides comprehensive and practical guidance on the process of researching a range of relevant literature on a subject, as well as planning and writing a literature review.

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In the previous article , you looked at how the literature review, wherever it is found, whether in the introduction or in a separate section, might be organised chronologically. Perhaps a more common way to organise the literature review is to group the literature as you see it – that is, to organise and discuss the literature by theme.

Advantages of doing a thematic literature review 

• Taking a thematic approach from an early point in your research allows you to see how much literature you have identified for each issue . You can then assess how much more you might need to read. 
• Identify which areas may suffer from a significant lack of existing literature/studies .
• Highlight outstanding gaps in the current body of work.
• Demonstrate the need or opportunities for extending previous research. 
• Taking this evaluative approach allows you more space to assert your own voice and authority , and to engage more intimately with the literature from the beginning. You’ll get to take a more active role in identifying the connections between existing studies and research on your topic.
• By building connections between themes to your research project, you’ll help your reader gain a better, broader overview of the relevant literature.

Deciding on a thematic literature review

One way to do decide going thematic with your literature review is to categorise your bibliography at an early stage into groups , each of which deals with a particular issue in a similar way.

• So, you might look at a topic by discipline, by epistemology, by theoretical approach or argument or by methodology.
• Alternatively, you might look at the topic by issue or by level (e.g. selecting literature that focuses on individuals at a local / institutional level, rather than national or international). 

Note : There are innumerable ways of viewing the literature from a thematic standpoint and there is no one correct method to write or structure a thematic literature review. It is more important to consider what approaches would be more useful to your research project and what would help you to best address your research questions / hypotheses .

Structuring and writing a thematic literature review

Here are some points to keep in mind when organising and writing your literature review thematically.

A. Beginning the review

Reviewing the literature thematically by groups offers you a flexible starting point. Where you begin can impact how you present the rest of the literature. 

B. Being evaluative

The thematic approach allows you to identify the strengths and weaknesses of a theme within your specific research. This means that it may be less descriptive than taking a more chronological approach, and would likely be more evaluative or analytical . 

C. Establishing your credentials

This review is an important element in establishing your academic credentials, especially at the PhD level. In journal articles , though, you need to keep it as concise as possible, and be selective in choosing the most relevant and appropriate literature to contextualise your specific research.

D. Ending the review

You will probably want to end with the literature closest to your research . The last part may need to go into greater detail if it covers the literature that is the most relevant to your own topic.

Thematic literature review: Example

Below is the first section to an article which clearly breaks up the first part of the literature review into three broad themes (structure, social construction and historical evolution), providing the most prominent names associated with each one. (Note the highlighted text.)

Over the last 20 years, a large number of studies on academic writing have been devoted to the research article, in particular, its structure, social construction and historical evolution. A number of these studies have concerned themselves with the overall organization of various parts of the research article , such as the introduction (e.g. Swales, 1981, Swales, 1990, Swales and Najjar, 1987), the results sections (Brett, 1994, Thompson, 1993), discussions (Hopkins & Dudley-Evans, 1988) and even the abstracts that accompany the research articles (Salager-Meyer, 1990, Salager-Meyer, 1992). Various lexico-grammatical features of the research article (RA) have also been explored, ranging from tense choice to citation practices. Beyond the textual structure of this genre, research has also focused on the historical development of the research article (Bazerman, 1988, Atkinson, 1993, Salager-Meyer, 1999, Vande Kopple, 1998) and the social construction of this genre (Myers, 1990).

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How to Do Thematic Analysis | Guide & Examples

Published on 5 May 2022 by Jack Caulfield .

Thematic analysis is a method of analysing qualitative data . It is usually applied to a set of texts, such as an interview or transcripts . The researcher closely examines the data to identify common themes, topics, ideas and patterns of meaning that come up repeatedly.

There are various approaches to conducting thematic analysis, but the most common form follows a six-step process:

• Familiarisation
• Generating themes
• Reviewing themes
• Defining and naming themes

This process was originally developed for psychology research by Virginia Braun and Victoria Clarke . However, thematic analysis is a flexible method that can be adapted to many different kinds of research.

Table of contents

When to use thematic analysis, different approaches to thematic analysis, step 1: familiarisation, step 2: coding, step 3: generating themes, step 4: reviewing themes, step 5: defining and naming themes, step 6: writing up.

Thematic analysis is a good approach to research where you’re trying to find out something about people’s views, opinions, knowledge, experiences, or values from a set of qualitative data – for example, interview transcripts , social media profiles, or survey responses .

Some types of research questions you might use thematic analysis to answer:

• How do patients perceive doctors in a hospital setting?
• What are young women’s experiences on dating sites?
• What are non-experts’ ideas and opinions about climate change?
• How is gender constructed in secondary school history teaching?

To answer any of these questions, you would collect data from a group of relevant participants and then analyse it. Thematic analysis allows you a lot of flexibility in interpreting the data, and allows you to approach large datasets more easily by sorting them into broad themes.

However, it also involves the risk of missing nuances in the data. Thematic analysis is often quite subjective and relies on the researcher’s judgement, so you have to reflect carefully on your own choices and interpretations.

Pay close attention to the data to ensure that you’re not picking up on things that are not there – or obscuring things that are.

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Once you’ve decided to use thematic analysis, there are different approaches to consider.

There’s the distinction between inductive and deductive approaches:

• An inductive approach involves allowing the data to determine your themes.
• A deductive approach involves coming to the data with some preconceived themes you expect to find reflected there, based on theory or existing knowledge.

There’s also the distinction between a semantic and a latent approach:

• A semantic approach involves analysing the explicit content of the data.
• A latent approach involves reading into the subtext and assumptions underlying the data.

After you’ve decided thematic analysis is the right method for analysing your data, and you’ve thought about the approach you’re going to take, you can follow the six steps developed by Braun and Clarke .

The first step is to get to know our data. It’s important to get a thorough overview of all the data we collected before we start analysing individual items.

This might involve transcribing audio , reading through the text and taking initial notes, and generally looking through the data to get familiar with it.

Next up, we need to code the data. Coding means highlighting sections of our text – usually phrases or sentences – and coming up with shorthand labels or ‘codes’ to describe their content.

Let’s take a short example text. Say we’re researching perceptions of climate change among conservative voters aged 50 and up, and we have collected data through a series of interviews. An extract from one interview looks like this:

In this extract, we’ve highlighted various phrases in different colours corresponding to different codes. Each code describes the idea or feeling expressed in that part of the text.

At this stage, we want to be thorough: we go through the transcript of every interview and highlight everything that jumps out as relevant or potentially interesting. As well as highlighting all the phrases and sentences that match these codes, we can keep adding new codes as we go through the text.

After we’ve been through the text, we collate together all the data into groups identified by code. These codes allow us to gain a condensed overview of the main points and common meanings that recur throughout the data.

Next, we look over the codes we’ve created, identify patterns among them, and start coming up with themes.

Themes are generally broader than codes. Most of the time, you’ll combine several codes into a single theme. In our example, we might start combining codes into themes like this:

At this stage, we might decide that some of our codes are too vague or not relevant enough (for example, because they don’t appear very often in the data), so they can be discarded.

Other codes might become themes in their own right. In our example, we decided that the code ‘uncertainty’ made sense as a theme, with some other codes incorporated into it.

Again, what we decide will vary according to what we’re trying to find out. We want to create potential themes that tell us something helpful about the data for our purposes.

Now we have to make sure that our themes are useful and accurate representations of the data. Here, we return to the dataset and compare our themes against it. Are we missing anything? Are these themes really present in the data? What can we change to make our themes work better?

If we encounter problems with our themes, we might split them up, combine them, discard them, or create new ones: whatever makes them more useful and accurate.

For example, we might decide upon looking through the data that ‘changing terminology’ fits better under the ‘uncertainty’ theme than under ‘distrust of experts’, since the data labelled with this code involves confusion, not necessarily distrust.

Now that you have a final list of themes, it’s time to name and define each of them.

Defining themes involves formulating exactly what we mean by each theme and figuring out how it helps us understand the data.

Naming themes involves coming up with a succinct and easily understandable name for each theme.

For example, we might look at ‘distrust of experts’ and determine exactly who we mean by ‘experts’ in this theme. We might decide that a better name for the theme is ‘distrust of authority’ or ‘conspiracy thinking’.

Finally, we’ll write up our analysis of the data. Like all academic texts, writing up a thematic analysis requires an introduction to establish our research question, aims, and approach.

We should also include a methodology section, describing how we collected the data (e.g., through semi-structured interviews or open-ended survey questions ) and explaining how we conducted the thematic analysis itself.

The results or findings section usually addresses each theme in turn. We describe how often the themes come up and what they mean, including examples from the data as evidence. Finally, our conclusion explains the main takeaways and shows how the analysis has answered our research question.

In our example, we might argue that conspiracy thinking about climate change is widespread among older conservative voters, point out the uncertainty with which many voters view the issue, and discuss the role of misinformation in respondents’ perceptions.

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Using NVivo TM as a methodological tool for a literature review on nursing innovation: a step-by-step approach

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This paper describes a step-by-step process on how to conduct a literature review using a qualitative analysis approach in conducting a literature review using NVivo to drive the analysis and explore the state of nursing innovation.

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This manuscript makes a unique contribution highlighting the importance of a comprehensive literature review following conceptual and methodological guidance. Previous literature on the literature review process usually describes the process quickly and without a specific step by step process. This manuscript describes a six-step process to conduct a literature review using a qualitative analytical program. The researcher selects the scope and establishes a search strategy, determines and applies the criteria for the selection process, selects the qualitative software, imports the data, extracts and codes the data, and analyzes it.

Qualitative research applications, such as NVivo, support nurses’ literature review process by improving rigor and reproducibility. The tools within the applications help better organize the literature, enhance transparency to the analytical process, and provide tools to visualize the data to improve the review’s overall quality. Having the steps documented and organized allows better collaboration between various researchers.

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Rylee, T.L., Cavanagh, S.J. Using NVivo TM as a methodological tool for a literature review on nursing innovation: a step-by-step approach. Health Serv Outcomes Res Method 22 , 454–468 (2022). https://doi.org/10.1007/s10742-022-00270-2

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• Volume 33, Issue 5
• Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review
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• http://orcid.org/0000-0002-8498-7329 Manjekah Dunn 1 , 2 ,
• Iva Strnadová 3 , 4 , 5 ,
• Jackie Leach Scully 4 ,
• Jennifer Hansen 3 ,
• Julie Loblinzk 3 , 5 ,
• Skie Sarfaraz 5 ,
• Chloe Molnar 1 ,
• Elizabeth Emma Palmer 1 , 2
• 1 Faculty of Medicine & Health , University of New South Wales , Sydney , New South Wales , Australia
• 2 The Sydney Children's Hospitals Network , Sydney , New South Wales , Australia
• 3 School of Education , University of New South Wales , Sydney , New South Wales , Australia
• 4 Disability Innovation Institute , University of New South Wales , Sydney , New South Wales , Australia
• 5 Self Advocacy Sydney , Sydney , New South Wales , Australia
• Correspondence to Dr Manjekah Dunn, Paediatrics & Child Health, University of New South Wales Medicine & Health, Sydney, New South Wales, Australia; manjekah.dunn{at}unsw.edu.au

Objective To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.

Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals.

Eligibility criteria Peer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability.

Synthesis of results Inductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created.

Results Twenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals’ attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3).

Conclusions Multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability.

PROSPERO registration CRD42021290548.

• Decision making
• Healthcare quality improvement
• Patient-centred care
• Quality improvement
• Standards of care

Data availability statement

Data are available upon reasonable request. Additional data and materials such as data collection forms, data extraction and analysis templates and QualSyst assessment data can be obtained by contacting the corresponding author.

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/bmjqs-2023-016113

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What is already known on this topic

People with intellectual disability are frequently excluded from decision-making processes and not provided equal opportunity for informed consent, despite protections outlined in the United Nations Convention on the Rights of Persons with Disabilities.

People with intellectual disability have the capacity and desire to make informed medical decisions, which can improve their well-being, health satisfaction and health outcomes.

What this review study adds

Health professionals lack adequate training in valid informed consent and making reasonable adjustments for people with intellectual disability, and continue to perpetuate assumptions of incapacity.

Health information provided to people with intellectual disability is often inaccessible and insufficient for them to make informed decisions about healthcare.

The role of support people, systemic constraints, a person-centred approach and ineffective healthcare communication also affect informed consent.

How this review might affect research, practice or policy

Health professionals need additional training on how to provide a valid informed consent process for people with intellectual disability, specifically in using accessible health information, making reasonable adjustments (e.g., longer/multiple appointments, options of a support person attending or not, using plain English), involving the individual in discussions, and communicating effectively with them.

Inclusive research is needed to hear the voices and opinions of people with intellectual disability about healthcare decision-making and about informed consent practices in specific healthcare settings.

Introduction

Approximately 1% of the world’s population have intellectual disability. 1 Intellectual disability is medically defined as a group of neurodevelopmental conditions beginning in childhood, with below average cognitive functioning and adaptive behaviour, including limitations in conceptual, social and practical skills. 2 People with intellectual disability prefer an alternative strength-based definition, reflected in the comment by Robert Strike OAM (Order of Australia Medal): ‘We can learn if the way of teaching matches how the person learns’, 3 reinforcing the importance of providing information tailored to the needs of a person with intellectual disability. A diagnosis of intellectual disability is associated with significant disparities in health outcomes. 4–7 Person-centred decision-making and better communication have been shown to improve patient satisfaction, 8 9 the physician–patient relationship 10 and overall health outcomes 11 for the wider population. Ensuring people with intellectual disability experience informed decision-making and accessible healthcare can help address the ongoing health disparities and facilitate equal access to healthcare.

Bodily autonomy is an individual’s power and agency to make decisions about their own body. 12 Informed consent for healthcare enables a person to practice bodily autonomy and is protected, for example, by the National Safety and Quality Health Service Standards (Australia), 13 Mental Capacity Act (UK) 14 and the Joint Commission Standards (USA). 15 In this article, we define informed consent according to three requirements: (1) the person is provided with information they understand, (2) the decision is free of coercion and (3) the person must have capacity. 16 For informed consent to be valid, this process must be suited to the individual’s needs so that they can understand and communicate effectively. Capacity is the ability to give informed consent for a medical intervention, 17 18 and the Mental Capacity Act outlines that ‘a person must be assumed to have capacity unless it is established that he lacks capacity’ and that incapacity can only be established if ‘all practicable steps’ to support capacity have been attempted without success. 14 These assumptions of capacity are also decision-specific, meaning an individual’s ability to consent can change depending on the situation, the choice itself and other factors. 17

Systemic issues with healthcare delivery systems have resulted in access barriers for people with intellectual disability, 19 despite the disability discrimination legislation in many countries who are signatories to the United Nations (UN) Convention on the Rights of Persons with Disabilities. 20 Patients with intellectual disability are not provided the reasonable adjustments that would enable them to give informed consent for medical procedures or interventions, 21 22 despite evidence that many people with intellectual disability have both the capacity and the desire to make their own healthcare decisions. 21 23

To support people with intellectual disability to make independent health decisions, an equitable and accessible informed consent process is needed. 24 However, current health systems have consistently failed to provide this. 21 25 To address this gap, we must first understand the factors that contribute to inequitable and inaccessible consent. To the best of our knowledge, the only current review of informed consent for people with intellectual disability is an integrative review by Goldsmith et al . 26 Many of the included articles focused on assessment of capacity 27–29 and research consent. 30–32 The review’s conclusion supported the functional approach to assess capacity, with minimal focus on how the informed consent processes can be improved. More recently, there has been a move towards ensuring that the consent process is accessible for all individuals, including elderly patients 33 and people with aphasia. 34 However, there remains a paucity of literature about the informed consent process for people with intellectual disability, with no systematic reviews summarising the factors influencing the healthcare consent process for people with intellectual disability.

To identify barriers to and enablers of the informed healthcare consent process for people with intellectual disability, and to understand how this can be made equitable and accessible.

A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) systematic literature review protocol. 35 The PRISMA 2020 checklist 36 and ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ) reporting guidelines were also followed. 37 The full study protocol is included in online supplemental appendix 1 .

Supplemental material

No patients or members of the public were involved in this research for this manuscript.

Search strategy

A search strategy was developed to identify articles about intellectual disability, consent and healthcare interventions, described in online supplemental appendix 2 . Multiple databases were searched for articles published between January 1990 to January 2022 (Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL). These databases include healthcare and psychology databases that best capture relevant literature on this topic, including medical, nursing, social sciences and bioethical literature. The search was limited to studies published from 1990 as understandings of consent have changed since then. 38 39 This yielded 4853 unique papers which were imported into Covidence, a specialised programme for conducting systematic reviews. 40

Study selection

Citation screening by abstract and titles was completed by two independent researchers (MD and EEP). Included articles had to:

Examine the informed consent process for a healthcare intervention for people with intellectual disability.

Have collected more than 50% of its data from relevant stakeholders, including adults with intellectual disability, families or carers of a person with intellectual disability, and professionals who engage with people with intellectual disability.

Report empirical data from primary research methodology.

Be published in a peer-reviewed journal after January 1990.

Be available in English.

Full text screening was completed by two independent researchers (MD and EEP). Articles were excluded if consent was only briefly discussed or if it focused on consent for research, capacity assessment, or participant knowledge or comprehension. Any conflicts were resolved through discussion with an independent third researcher (IS).

Additional studies were identified through an ancestral search and by hand-searching three major journals relevant to intellectual disability research. Journals were selected if they had published more than one included article for this review or in previous literature reviews conducted by the research team.

Quality assessment

Two independent researchers (MD and IS) assessed study quality with the QualSyst tool, 41 which can assess both qualitative and quantitative research papers. After evaluating the distribution of scores, a threshold value of 55% was used, as suggested by QualSyst 41 to exclude poor-quality studies but capture enough studies overall. Any conflicts between the quality assessment scores were resolved by a third researcher (EEP). For mixed-method studies, both qualitative and quantitative quality scores were calculated, and the higher value used.

Data collection

Two independent researchers (MD and JH) reviewed each study and extracted relevant details, including study size, participant demographics, year, country of publication, study design, data analysis and major outcomes reported. Researchers used standardised data collection forms designed, with input from senior researchers with expertise in qualitative research (IS and EEP), to extract data relevant to the review’s research aims. The form was piloted on one study, and a second iteration made based on feedback. These forms captured data on study design, methods, participants, any factors affecting the process of informed consent and study limitations. Data included descriptions and paragraphs outlining key findings, the healthcare context, verbatim participant quotes and any quantitative analyses or statistics. Missing or unclear data were noted.

Data analysis

A pilot literature search showed significant heterogeneity in methodology of studies, limiting the applicability of traditional quantitative analysis (ie, meta-analysis). Instead, inductive thematic analysis was chosen as an alternative methodology 42 43 that has been used in recent systematic reviews examining barriers and enablers of other health processes. 44 45 The six-phase approach described by Braun and Clarke was used. 46 47 A researcher (MD) independently coded the extracted data of each study line-by-line, with subsequent data grouped into pre-existing codes or new concepts when necessary. Codes were reviewed iteratively and grouped into categories, subthemes and themes framed around the research question. Another independent researcher (JH) collated and analysed the data on study demographics, methods and limitations. The themes were reviewed by two senior researchers (EEP and IS).

Qualitative methods of effect size calculations have been described in the literature, 48 49 which was captured in this review by the number of studies that identified each subtheme, with an assigned frequency rating to compare their relative significance. Subthemes were given a frequency rating of A, B, C or D if they were identified by >10, 7–9, 4–6 or <3 articles, respectively. The overall significance of each theme was estimated by the number of studies that mentioned it and the GRADE framework, a stepwise approach to quality assessment using a four-tier rating system. Each study was evaluated for risk of bias, inconsistency, indirectness, imprecision and publication bias. 50 51 Study sensitivity was assessed by counting the number of distinct subthemes included. 52 The quality of findings was designated high, moderate or low depending on the frequency ratings, the QualSyst score and the GRADE scores of studies supporting the finding. Finally, the relative contributions of each study were evaluated by the number of subthemes described, guided by previously reported methods for qualitative reviews. 52

Co-research

The findings were reviewed by two co-researchers with intellectual disability (JL and SS), with over 30 years combined experience as members and employees of a self-advocacy organisation. Guidance on the findings and an easy read summary was produced in line with best-practice inclusive research 53 54 over multiple discussions. Input from two health professional researchers (MD and EEP) provided data triangulation and sense-checking of findings.

Twenty-three articles were identified ( figure 1 ): 14 qualitative, 6 quantitative and 3 mixed-methods. Two papers included the same population of study participants: McCarthy 55 and McCarthy, 56 but had different research questions. Fovargue et al 57 was excluded due to a quality score of 35%. Common quality limitations were a lack of verification procedures to establish credibility and limited researcher reflexivity. No studies were excluded due to language requirements (as all were in English) or age restrictions (all studies had majority adult participants).

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PRISMA 2020 flowchart for the systematic review. 36

Studies were published from 1999 to 2020 and involved participant populations from the UK (n=18), USA (n=3), Sweden (n=1) and Ireland (n=1). Participant numbers ranged from 9 to 604 (median 21), and participants included people with intellectual disability (n=817), health professionals (n=272), carers and support people (n=48), and other professionals that work with people with intellectual disability (n=137, community service agency directors, social workers, administrative staff and care home staff). Ages of participants ranged from 8 to 84 years, though only Aman et al 58 included participants <18 years of age. This study was included as the article states very few children were included. Studies examined consent in different contexts, including contraception and sexual health (6/23 articles), 58–60 medications (5/23 articles), 58–62 emergency healthcare, 63 cervical screening, 64 community referrals, 58–61 65 mental health, 66 hydrotherapy, 64 blood collection 67 and broad decision-making consent without a specific context. 65 68–71 A detailed breakdown of each study is included in online supplemental appendix 3 .

Six major themes were identified from the studies, summarised in figure 2 . An overview of included studies showing study sensitivity, effect size, QualSyst and GRADE scores is given in online supplemental appendix 4 . Studies with higher QualSyst and GRADE scores contributed more to this review’s findings and tended to include more subthemes; specifically, Rogers et al , 66 Sowney and Barr, 63 Höglund and Larsson, 72 and McCarthy 55 and McCarthy. 56 Figure 3 gives the easy read version of theme 1, with the full easy read summary in online supplemental appendix 5 .

Summary of the identified six themes and subthemes.

Theme 1 of the easy read summary.

Theme 1—Health professionals’ attitudes and lack of education about informed consent

Health professionals’ attitudes and practices were frequently (18/21) identified as factors affecting the informed consent process, with substantial evidence supporting this theme. Studies noted the lack of training for health professionals in supporting informed consent for people with intellectual disability, their desire for further education, and stereotypes and discrimination perpetuated by health professionals.

Lack of health professional education on informed consent and disability discrimination legislation

Multiple studies reported inconsistent informed consent practices, for various reasons: some reported that health professionals ‘forgot’ to or ‘did not realise consent was necessary’, 63 73 but inconsistent consent practices were also attributed to healthcare providers’ unfamiliarity with consent guidelines and poor education on this topic. Carlson et al 73 reported that only 44% of general practitioners (GPs) were aware of consent guidelines, and there was the misconception that consent was unnecessary for people with intellectual disability. Similarly, studies of psychologists 66 and nurses 63 found that many were unfamiliar with their obligations to obtain consent, despite the existence of anti-discrimination legislation. People with intellectual disability describe feeling discriminated against by health professionals, reflected in comments such as ‘I can tell, my doctor just thinks I’m stupid – I'm nothing to him’. 74 Poor consent practices by health professionals were observed in Goldsmith et al , 67 while health professionals surveyed by McCarthy 56 were unaware of their responsibility to provide accessible health information to women with intellectual disability. Improving health professional education and training was suggested by multiple studies as a way to remove this barrier. 63 65–67 69 73

Lack of training on best practices for health professions caring for people with intellectual disability

A lack of training in caring for and communicating with people with intellectual disability was also described by midwives, 72 psychologists, 66 nurses, 63 pharmacists 61 and GPs. 56 72 75 Health professionals lacked knowledge about best practice approaches to providing equitable healthcare consent processes through reasonable adjustments such as accessible health information, 56 60 66 longer appointments times, 60 72 simple English 62 67 and flexible approaches to patient needs. 63 72

Health professionals’ stereotyping and assumptions of incapacity

Underlying stereotypes contributed to some health professionals’ (including nurses, 63 GPs 56 and physiotherapists 64 ) belief that people with intellectual disability lack capacity and therefore, do not require opportunities for informed consent. 56 64 In a survey of professionals referring people with intellectual disability to a disability service, the second most common reason for not obtaining consent was ‘patient unable to understand’. 73

Proxy consent as an inappropriate alternative

People with intellectual disability are rarely the final decision-maker in their medical choices, with many health providers seeking proxy consent from carers, support workers and family members, despite its legal invalidity. In McCarthy’s study (2010), 18/23 women with intellectual disability said the decision to start contraception was made by someone else. Many GPs appeared unaware that proxy consent is invalid in the UK. 56 Similar reports came from people with intellectual disability, 55 56 60 64 69 76 health professionals (nurses, doctors, allied health, psychologists), 56 63 64 66 77 support people 64 77 and non-medical professionals, 65 73 and capacity was rarely documented. 56 62 77

Exclusion of people with intellectual disability from decision-making discussions

Studies described instances where health professionals made decisions for their patients with intellectual disability or coerced patients into a choice. 55 72 74 76 77 In Ledger et al 77 , only 62% of women with intellectual disability were involved in the discussion about contraception, and only 38% made the final decision, and others stated in Wiseman and Ferrie 74 : ‘I was not given the opportunity to explore the different options. I was told what one I should take’. Three papers outlined instances where the choices of people with intellectual disability were ignored despite possessing capacity 65 66 69 and when a procedure continued despite them withdrawing consent. 69

Theme 2—Inadequate accessible health information

Lack of accessible health information.

The lack of accessible health information was the most frequently identified subtheme (16/23 studies). Some studies reported that health professionals provided information to carers instead, 60 avoided providing easy read information due to concerns about ‘offending’ patients 75 or only provided verbal information. 56 67 Informed consent was supported when health professionals recognised the importance of providing medical information 64 and when it was provided in an accessible format. 60 Alternative approaches to health information were explored, including virtual reality 68 and in-person education sessions, 59 with varying results. Overall, the need to provide information in different formats tailored to an individual’s communication needs, rather than a ‘one size fits all’ approach, was emphasised by both people with intellectual disability 60 and health professionals. 66

Insufficient information provided

Studies described situations where insufficient information was provided to people with intellectual disability to make informed decisions. For example, some people felt the information from their GP was often too basic to be helpful (Fish et al 60 ) and wanted additional information on consent forms (Rose et al 78 ).

Theme 3—The involvement of support people

Support people (including carers, family members and group home staff) were identified in 11 articles as both enablers of and barriers to informed consent. The antagonistic nature of these findings and lower frequency of subthemes are reflected in the lower quality assessments of evidence.

Support people facilitated communication with health professionals

Some studies reported carers bridging communication barriers with health to support informed consent. 63 64 McCarthy 56 found 21/23 of women with intellectual disability preferred to see doctors with a support person due to perceived benefits: ‘Sometimes I don’t understand it, so they have to explain it to my carer, so they can explain it to me easier’. Most GPs in this study (93%) also agreed that support people aided communication.

Support people helped people with intellectual disability make decisions

By advocating for people with intellectual disability, carers encouraged decision-making, 64 74 provided health information, 74 77 emotional support 76 and assisted with reading or remembering health information. 55 58 76 Some people with intellectual disability explicitly appreciated their support person’s involvement, 60 such as in McCarthy’s 55 study where 18/23 participants felt supported and safer when a support person was involved.

Support people impeded individual autonomy

The study by Wiseman and Ferrie 74 found that while younger participants with intellectual disability felt family members empowered their decision-making, older women felt family members impaired their ability to give informed consent. This was reflected in interviews with carers who questioned the capacity of the person with intellectual disability they supported and stated they would guide them to pick the ‘best choice’ or even over-ride their choices. 64 Studies of psychologists and community service directors described instances where the decision of family or carers was prioritised over the wishes of the person with intellectual disability. 65 66 Some women with intellectual disability in McCarthy’s studies (2010, 2009) 55 56 appeared to have been coerced into using contraception by parental pressures or fear of losing group home support.

Theme 4—Systemic constraints within healthcare systems

Time restraints affect informed consent and accessible healthcare.

Resource limitations create time constraints that impair the consent process and have been identified as a barrier by psychologists, 66 GPs, 56 hospital nurses 63 and community disability workers. 73 Rogers et al 66 highlighted that a personalised approach that could improve informed decision-making is restricted by inflexible medical models. Only two studies described flexible patient-centred approaches to consent. 60 72 A survey of primary care practices in 2007 reported that most did not modify their cervical screening information for patients with intellectual disability because it was not practical. 75

Inflexible models of consent

Both people with intellectual disability 76 and health professionals 66 recognised that consent is traditionally obtained through one-off interactions prior to an intervention. Yet, for people with intellectual disability, consent should ideally be an ongoing process that begins before an appointment and continues between subsequent ones. Other studies have tended to describe one-off interactions where decision-making was not revisited at subsequent appointments. 56 60 72 76

Lack of systemic supports

In one survey, self-advocates highlighted a lack of information on medication for people with intellectual disability and suggested a telephone helpline and a centralised source of information to support consent. 60 Health professionals also want greater systemic support, such as a health professional specialised in intellectual disability care to support other staff, 72 or a pharmacist specifically to help patients with intellectual disability. 61 Studies highlighted a lack of guidelines about healthcare needs of people with intellectual disabilities such as contraceptive counselling 72 or primary care. 75

Theme 5—Person-centred informed consent

Ten studies identified factors related to a person-centred approach to informed consent, grouped below into three subthemes. Health professionals should tailor their practice when obtaining informed consent from people with intellectual disability by considering how these subthemes relate to the individual. Each subtheme was described five times in the literature with a relative frequency rating of ‘C’, contributing to overall lower quality scores.

Previous experience with decision-making

Arscott et al 71 found that the ability of people with intellectual disability to consent changed with their verbal and memory skills and in different clinical vignettes, supporting the view of ‘functional’ capacity specific to the context of the medical decision. Although previous experiences with decision-making did not influence informed consent in this paper, other studies suggest that people with intellectual disability accustomed to independent decision-making were more able to make informed medical decisions, 66 70 and those who live independently were more likely to make independent healthcare decisions. 56 Health professionals should be aware that their patients with intellectual disability will have variable experience with decision-making and provide individualised support to meet their needs.

Variable awareness about healthcare rights

Consent processes should be tailored to the health literacy of patients, including emphasising available choices and the option to refuse treatment. In some studies, medical decisions were not presented to people with intellectual disability as a choice, 64 and people with intellectual disability were not informed of their legal right to accessible health information. 56

Power differences and acquiescence

Acquiescence by people with intellectual disability due to common and repeated experiences of trauma—that is, their tendency to agree with suggestions made by carers and health professionals, often to avoid upsetting others—was identified as an ongoing barrier. In McCarthy’s (2009) interviews with women with intellectual disability, some participants implicitly rejected the idea that they might make their own healthcare decisions: ‘They’re the carers, they have responsibility for me’. Others appeared to have made decisions to appease their carers: ‘I have the jab (contraceptive injection) so I can’t be blamed for getting pregnant’. 55 Two studies highlighted that health professionals need to be mindful of power imbalances when discussing consent with people with intellectual disability to ensure the choices are truly autonomous. 61 66

Theme 6—Effective communication between health professionals and patients

Implementation of reasonable adjustments for verbal and written information.

Simple language was always preferred by people with intellectual disability. 60 67 Other communication aids used in decision-making included repetition, short sentences, models, pictures and easy read brochures. 72 Another reasonable adjustment is providing the opportunity to ask questions, which women with intellectual disability in McCarthy’s (2009) study reported did not occur. 55

Tailored communication methods including non-verbal communication

Midwives noted that continuity of care allows them to develop rapport and understand the communication preferences of people with intellectual disability. 72 This is not always possible; for emergency nurses, the lack of background information about patients with intellectual disability made it challenging to understand their communication preferences. 63 The use of non-verbal communication, such as body language, was noted as underutilised 62 66 and people with intellectual disability supported the use of hearing loops, braille and sign language. 60

To the best of our knowledge, this is the first systematic review investigating the barriers and enablers of the informed consent process for healthcare procedures for people with intellectual disability. The integrative review by Goldsmith et al 26 examined capacity assessment and shares only three articles with this systematic review. 69 71 73 Since the 2000s, there has been a paradigm shift in which capacity is no longer considered a fixed ability that only some individuals possess 38 39 but instead as ‘functional’: a flexible ability that changes over time and in different contexts, 79 reflected in Goldsmith’s review. An individual’s capacity can be supported through various measures, including how information is communicated and how the decision-making process is approached. 18 80 By recognising the barriers and enablers identified in this review, physicians can help ensure the consent process for their patients with intellectual disability is both valid and truly informed. This review has highlighted the problems of inaccessible health information, insufficient clinical education on how to make reasonable adjustments and lack of person-centred trauma-informed care.

Recommendations

Health professionals require training in the informed consent process for people with intellectual disability, particularly in effective and respectful communication, reasonable adjustments and trauma-informed care. Reasonable adjustments include offering longer or multiple appointments, using accessible resources (such as easy read information or shared decision-making tools) and allowing patient choices (such as to record a consultation or involve a support person). Co-researchers reported that many people with intellectual disability prefer to go without a support person because they find it difficult to challenge their decisions and feel ignored if the health professional only talks to the support person. People with intellectual disability also feel they cannot seek second opinions before making medical decisions or feel pressured to provide consent, raising the possibility of coercion. These experiences contribute to healthcare trauma. Co-researchers raised the importance of building rapport with the person with intellectual disability and of making reasonable adjustments, such as actively advocating for the person’s autonomy, clearly stating all options including the choice to refuse treatment, providing opportunities to contribute to discussions and multiple appointments to ask questions and understand information. They felt that without these efforts to support consent, health professionals can reinforce traumatic healthcare experiences for people with intellectual disability. Co-researchers noted instances where choices were made by doctors without discussion and where they were only given a choice after requesting one and expressed concern that these barriers are greater for those with higher support needs.

Co-researchers showed how these experiences contributed to mistrust of health professionals and poorer health outcomes. In one situation, a co-researcher was not informed of a medication’s withdrawal effects, resulting in significant side-effects when it was ceased. Many people with intellectual disability describe a poor relationship with their health professionals, finding it difficult to trust health information provided due to previous traumatic experiences of disrespect, coercion, lack of choice and inadequate support. Many feel they cannot speak up due to the power imbalance and fear of retaliation. Poor consent practices and lack of reasonable adjustments directly harm therapeutic alliances by reducing trust, contribute to healthcare trauma and lead to poorer health outcomes for people with intellectual disability.

Additional education and training for health professionals is urgently needed in the areas of informed consent, reasonable adjustments and effective communication with people with intellectual disability. The experiences of health professionals within the research team confirmed that there is limited training in providing high-quality healthcare for people with intellectual disability, including reasonable adjustments and accessible health information. Co-researchers also suggested that education should be provided to carers and support people to help them better advocate for people with intellectual disability.

Health information should be provided in a multimodal format, including written easy read information. Many countries have regulation protecting the right to accessible health information and communication support to make an informed choice, such as UK’s Accessible Information Standard, 81 and Australia’s Charter of Health Care Rights, 24 yet these are rarely observed. Steps to facilitate this include routinely asking patients about information requirements, system alerts for an individual’s needs or routinely providing reasonable adjustments. 82 Co-researchers agreed that there is a lack of accessible health information, particularly about medications, and that diagrams and illustrations are underutilised. There is a critical need for more inclusive and accessible resources to help health professionals support informed consent in a safe and high-quality health system. These resources should be created through methods of inclusive research, such as co-production, actively involving people with intellectual disability in the planning, creation, and feedback process. 53

Strengths and limitations

This systematic review involved two co-researchers with intellectual disability in sense-checking findings and co-creating the easy read summary. Two co-authors who are health professionals provided additional sense-checking of findings from a different stakeholder perspective. In future research, this could be extended by involving people with intellectual disability in the design and planning of the study as per recommendations for best-practice inclusive research. 53 83

The current literature is limited by low use of inclusive research practices in research involving people with intellectual disability, increasing vulnerability to external biases (eg, inaccessible questionnaires, involvement of carers in data collection, overcompliance or acquiescence and absence of researcher reflexivity). Advisory groups or co-research with people with intellectual disability were only used in five studies. 58 60 68 74 76 Other limitations include unclear selection criteria, low sample sizes, missing data, using gatekeepers in patient selection and predominance of UK-based studies—increasing the risk of bias and reducing transferability. Nine studies (out of 15 involving people with intellectual disability) explicitly excluded those with severe or profound intellectual disability, reflecting a selection bias; only one study specifically focused on people with intellectual disability with higher support needs. Studies were limited to a few healthcare contexts, with a focus on consent about sexual health, contraception and medications.

The heterogeneity and qualitative nature of studies made it challenging to apply traditional meta-analysis. However, to promote consistency in qualitative research, the PRISMA and ENTREQ guidelines were followed. 36 37 Although no meta-analyses occurred, the duplication of study populations in McCarthy 2009 and 2010 likely contributed to increased significance of findings reported in both studies. Most included studies (13/23) were published over 10 years ago, reducing the current relevance of this review’s findings. Nonetheless, the major findings reflect underlying systemic issues within the health system, which are unlikely to have been resolved since the articles were published, as the just-released final report of the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability highlights. 84 There is an urgent need for more inclusive studies to explore the recommendations and preferences of people with intellectual disability about healthcare choices.

Informed consent processes for people with intellectual disability should include accessible information and reasonable adjustments, be tailored to individuals’ needs and comply with consent and disability legislation. Resources, guidelines and healthcare education are needed and should cover how to involve carers and support people, address systemic healthcare problems, promote a person-centred approach and ensure effective communication. These resources and future research must use principles of inclusive co-production—involving people with intellectual disability at all stages. Additionally, research is needed on people with higher support needs and in specific contexts where informed consent is vital but under-researched, such as cancer screening, palliative care, prenatal and newborn screening, surgical procedures, genetic medicine and advanced therapeutics such as gene-based therapies.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1
• Data supplement 2
• Data supplement 3
• Data supplement 4
• Data supplement 5

Contributors MD, EEP and IS conceived the idea for the systematic review. MD drafted the search strategy which was refined by EEP and IS. MD and EEP completed article screening. MD and IS completed quality assessments of included articles. MD and JH completed data extraction. MD drafted the original manuscript. JL and SS were co-researchers who sense-checked findings and were consulted to formulate dissemination plans. JL and SS co-produced the easy read summary with MD, CM, JH, EEP and IS. MD, JLS, EEP and IS reviewed manuscript wording. All authors critically reviewed the manuscript and approved it for publication. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. MD is the guarantor responsible for the overall content of this manuscript.

Funding This systematic literature review was funded by the National Health & Medical Research Council (NHMRC), Targeted Call for Research (TCR) into Improving health of people with intellectual disability. Research grant title "GeneEQUAL: equitable and accessible genomic healthcare for people with intellectual disability". NHMRC application ID: 2022/GNT2015753.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Linked Articles

• Editorial It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability Jonathon Ding Richard Keagan-Bull Irene Tuffrey-Wijne BMJ Quality & Safety 2024; 33 277-279 Published Online First: 30 Jan 2024. doi: 10.1136/bmjqs-2023-016830

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A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine

Lisa newington.

1 Imperial College Healthcare NHS Trust, Education Centre, Charing Cross Hospital, Fulham Palace Road, London, W6 8RF UK

2 Department of Surgery and Cancer, Faculty of Medicine, Imperial College London, London, UK

Adine Adonis

Layla bolton saghdaoui, margaret coffey, jennifer crow, olga fadeeva costa, catherine hughes, matthew savage, lillie shahabi.

3 Department of Brain Sciences, Faculty of Medicine, Imperial College London, London, UK

Caroline M. Alexander

Associated data.

The datasets generated and analysed during the current review are available in the Open Science Framework (OSF) repository ( https://osf.io/gj7se ). All other relevant data are included as supplementary files.

There are increasing opportunities for healthcare professionals outside medicine to be involved in and lead clinical research. However, there are few roles within these professions that include time for research. In order to develop such roles, and evaluate effective use of this time, the range of impacts of this clinical academic activity need to be valued and understood by healthcare leaders and managers. To date, these impacts have not been comprehensively explored, but are suggested to extend beyond traditional quantitative impact metrics, such as publications, citations and funding awards.

Ten databases, four grey literature repositories and a naïve web search engine were systematically searched for articles reporting impacts of clinical academic activity by healthcare professionals outside medicine. Specifically, this did not include the direct impacts of the research findings, rather the impacts of the research activity. All stages of the review were performed by a minimum of two reviewers and reported impacts were categorised qualitatively according to a modified VICTOR (making Visible the ImpaCT Of Research) framework.

Of the initial 2704 identified articles, 20 were eligible for inclusion. Identified impacts were mapped to seven themes: impacts for patients; impacts for the service provision and workforce; impacts to research profile, culture and capacity; economic impacts; impacts on staff recruitment and retention; impacts to knowledge exchange; and impacts to the clinical academic.

Conclusions

Several overlapping sub-themes were identified across the main themes. These included the challenges and benefits of balancing clinical and academic roles, the creation and implementation of new evidence, and the development of collaborations and networks. These may be key areas for organisations to explore when looking to support and increase academic activity among healthcare professionals outside medicine. The modified VICTOR tool is a useful starting point for individuals and organisations to record the impact of their research activity. Further work is needed to explore standardised methods of capturing research impact that address the full range of impacts identified in this systematic review and are specific to the context of clinical academics outside medicine.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-021-06354-y.

There is compelling evidence that research active healthcare organisations have improved care performance compared to their non-research active counterparts [ 1 ]. Examples include patients feeling better informed about their condition and medication, having greater confidence in their healthcare staff [ 2 ], greater staff adherence to treatment guidelines [ 3 ] and lower mortality rates [ 3 , 4 ]. In the UK, this has resulted in correlation between research activity and the national healthcare inspection rating [ 4 ].

Traditionally, healthcare research has been associated with medical professionals (doctors), with approximately 5% of UK medical consultants working in clinical academic roles [ 5 , 6 ]. Clinical academics engage in clinical practice and also conduct and lead programmes of applied health and/or social care research, often directly aimed at improving patient care and care pathways [ 7 ].

Healthcare professionals outside medicine are increasingly developing the expertise to lead clinically relevant research, with the aim of 1% of this workforce being employed in clinical academic roles by 2030 [ 8 ]. Healthcare professions outside medicine include: nursing, midwifery, the allied health professions (art therapists, dietitians, drama therapists, music therapists, occupational therapists, orthoptists, operating department practitioners, osteopaths, podiatrists, prosthetists/orthotists, paramedics, physiotherapists, radiographers, and speech and language therapists), clinical psychologists, healthcare scientists and pharmacists. Within the UK, the drive to increase the clinical academic workforce is supported by a targeted Health Education England/National Institute for Health Research funding stream specifically for these professions [ 9 ], and through fellowship funding from a number of national health charities. Similar schemes exist elsewhere [ 10 – 13 ].

As clinical academic activity increases, there is a need to evaluate its impact at both individual and organisational levels, and across the short to longer term. Several frameworks have been designed to guide impact assessments for healthcare research and these have recently been systematically reviewed to create a summary framework [ 14 ]. However, the focus is on evaluating individual programmes of research, rather than the impact of collective research activity within an organisation. This is also the case with other research impact assessment tools [ 15 ].

Outside the medical professions, the impacts of dedicated allied health professional (AHP) research roles have been systematically reviewed to explore their outcomes in terms of building research capacity and culture. Wenke and Mickan described varied roles, but most often these centred on the development of researchers’ own research projects and their dissemination [ 10 ]. Additional responsibilities included supervising others and developing strategies to promote research activity. These roles were found to have positive impacts on individual research skills, research outputs and research culture, however other areas of impact were not assessed, such as patient outcomes, changes to clinical training or practice guidelines, or increased investment. Importantly, only one study described practising clinicians with dual clinical and research roles, and other non-medical professionals, such as nurses and midwives, were excluded from the review.

Existing reviews have only included published research studies, thus overlooking impact reports that have been compiled by individual healthcare organisations or collaborations [ 16 , 17 ]. Such documents contain valuable insights and reflections on clinical academic programmes, often in the form of case studies, and are useful for other healthcare providers supporting or developing their own clinical academic strategies.

The current systematic review was developed in order to understand the full range of impacts of non-medical clinical academic roles. A cross-disciplinary approach was taken to include clinical academic activity among nurses, midwives, AHPs and other non-medical healthcare professionals.

The review protocol was pre-registered with the Open Science Foundation [ 18 ] and followed the PRISMA protocol reporting guidelines [ 19 ]. The primary review question was: what are the reported impacts of clinical academic activity among practising healthcare professionals outside medicine?

Selection criteria

Impact was not pre-defined for the purposes of this review, and eligible articles were those reporting any form of impact that was attributed to clinical academic activity carried out by non-medical healthcare professionals. This did not include the reported outcomes of clinical research studies, rather the impact of these individuals being involved in research activity. Clinical academic activity was defined as the review intervention, and was the involvement of practising clinicians in research. This included specific research roles, such as research fellowships or combined clinical academic positions, in addition to other protected research time or opportunities to be involved in research. The review population was defined as healthcare professionals outside medicine. Full eligibility criteria, including the list of eligible healthcare professions, are provided in Table  1 .

Review inclusion and exclusion criteria

Search strategy

Ten healthcare databases and four grey literature repositories were individually searched by the lead author between December 2019 and January 2020. Search locations are shown in Fig.  1 . The example search strategy for Medline is provided in Additional File  1 , which included i) terms for the different non-medical clinical disciplines, and ii) terms for clinical academic activity, combined with iii) terms for impact. The search strategy was developed and piloted by LN, CMA and MW, with additional assistance from a healthcare librarian (LG). There were no restrictions for country of publication, but due to time and resource limitations, articles were restricted to those available in the English language. An additional Google search for ‘impact of clinical academic nursing, midwifery and allied health’ was conducted in a naïve browser and the first 50 hits recorded.

PRISMA flowchart

Eligibility assessment

Identified references were exported into Covidence ( Covidence.org ) and duplicates removed. Title and abstract screening were performed in two stages. Firstly, the lead author and two members of the review team (JC and OFC) independently screened out those articles which clearly met the exclusion criteria. Any disagreements were resolved by discussion. Secondly, the lead author and two members of the review team (LS and LB) independently screened the remaining articles against both the inclusion and exclusion criteria. Again, any disagreements were resolved by discussion. Full text screening was independently performed by LN and one of five members of the review team (AA, MC, LS, OFC and LBS); disagreements were resolved by MW and CMA.

Quality assessment

The mixed methods appraisal tool (MMAT) was used to evaluate the quality of the included studies [ 20 ]. The assessment form was piloted prior to use and modified to include key components of the qualitative checklist proposed by Walsh et al. [ 21 ]. The quality assessment form template is provided in Additional File  2 . Quality assessment was conducted independently by LN and one of eight members of the review team (AA, LBS, CL, LS, MC, JJ, LB and JC). Disagreements were resolved by discussion. All relevant studies were included regardless of their MMAT score.

Data extraction

Data extraction was completed independently by LN and one of the eight members of the review team, listed above, and was conducted in parallel to the quality assessment. Data items were extracted using a pre-piloted electronic form under the headings listed in Table  2 . The two independent data extraction forms for each article were compared and harmonised by MS and CH, who referred back to the original articles where disagreement occurred. The impacts of the clinic academic activity were broadly characterised using the section headings from the VICTOR (making Visible the ImpaCT Of Research) framework [ 22 ]. The VICTOR framework was developed for individual research teams to record the impact of their study and is endorsed by the UK National Institute for Health Research [ 23 ]. It comprises a series of open ended questions categorised under seven sections: health benefits, safety and quality improvements for research participants and carers during the study; service and workforce impacts; research profile of the organisation and research capacity; economic impacts; organisation’s influence and reputation; knowledge generation and exchange. Following piloting for this systematic review, the headings were modified to include a section for impacts to the individual, and research profile and research capacity and the organisation’s influence and reputation were merged.

Data extraction items

Categories of impact were based on the VICTOR tool [ 22 ]

Data synthesis

Extracted data for each of the pre-identified categories of impact (Table ​ (Table2) 2 ) were independently analysed by two members of the review team (LN and one of CH, AA, MS, JC, LSB, MC and LB) to create a thematic synthesis. This involved independently coding the data to identify recurring, unique and contradictory content and using the codes to independently summarise the content of the theme in a series of sub-themes [ 24 ]. The findings were discussed and agreed together by the two independent reviewers for each category of impact. The final analysis for all categories of impact was discussed and refined by CMA, MW and LN.

Study characteristics

A total of 2704 articles were identified after removal of duplicates, of which 20 met the review eligibility criteria (Fig. ​ (Fig.1) 1 ) [ 13 , 16 , 17 , 25 – 41 ]. The most common reasons for exclusion were that the study population did not involve clinical academics, that is clinicians who were also involved in research activity; or the study assessed the amount of research interest/activity, rather than the impacts of this activity (Additional File  3 ). Of the included articles, nine reported qualitative data [ 17 , 25 , 29 – 31 , 33 , 36 , 38 , 41 ], three reported quantitative data [ 28 , 35 , 37 ] and eight reported a mixture of both [ 13 , 16 , 26 , 27 , 32 , 34 , 39 , 40 ]. Sixteen were peer reviewed journal articles and four were organisational reports. Publication dates ranged from 2003 to 2019 and the geographical distribution was: Europe (including the UK) 10; North America 5; Australasia 4; Middle East 1 (Table  3 ).

Details of the included studies

Participants

A variety of healthcare professions outside medicine were included. Eight articles involved mixed professional groups, most commonly nursing, midwifery and one or more of the allied health professions. Nine articles were specific to nursing, two to allied health professions and one to pharmacy. The nature of the clinical academic activity was not consistent. All articles discussed clinicians conducting research in clinical practice, however some also incorporated formal educational components at masters or doctoral level and others involved short programmes of research training and/or mentorship (Table ​ (Table3 3 ).

Methodological assessment

Outcomes of the MMAT assessment [ 20 ] are shown in Fig.  2 and are available in full via the Open Science Framework [ 18 ]. No articles met all quality assessment criteria, although three qualitative studies were rated as having a single area of concern [ 31 , 38 , 41 ]. Common issues with study quality and risk of bias for qualitative and mixed methods studies were a lack of clarity in how the findings were derived from the data and a lack of coherence between data, analysis and interpretation. Common issues with quantitative and mixed methods studies were a lack of information about the measurement tools/methods and a lack of consideration of response bias. Common issues across all study types were inadequate sampling methods and a lack of reporting of ethics/other approvals.

Quality assessment scores for included articles using the Mixed Methods Assessment Tool

Reported impacts of clinical academic activity

Reported impacts were categorised into seven main themes based on the modified section headings for the VICTOR framework (Table ​ (Table2). 2 ). The distribution of the reported impact themes across the articles included in this review are presented in Table  4 . Extracted and coded data for each theme was used to generate the sub-themes, which are described below and presented with illustrative excerpts from the included articles. The full framework of themes, sub-themes and additional quotes is provided in Additional File  4 . Most of the extracted impacts were positive in nature, reflecting the aims of the included papers (Table ​ (Table3), 3 ), however challenges for the individual clinical academics and their healthcare teams were also described.

Themes of impact reported in the included papers

Abbreviations : AUKUH Association of UK University Hospitals, DHSC UK Department of Health and Social Care, NMAHP-RU Nursing, Midwifery and Allied Health Professions Research Unit (Scotland)

Impacts for patients

The reported impacts for patients focused on beneficial changes to service provision that arose as a result of local clinical academic activity, and wider access to evidence-based healthcare as a result of the promotion of evidence-based practice across research-active teams and departments:

“This project demonstrated significant improvements in the neutropenic patient pathway, enhancing experience and outcomes for patients and a reduction in unnecessary admissions.” [ 27 ]

“Behaviours learned during the programmes provided benefits for improving the quality of care delivered within services … Respondents reported they discussed evidence with colleagues, searched the literature for evidence updates, questioned and used evidence to inform their practice following completion of the programme.” [ 16 ]

“My research has demonstrated the benefits of these kinds of approaches both to patients’ quality of life, and patients, carers, friends and families’ experience of palliative care services.” [ 36 ]

"[It is a] synergistic relationship, as research knowledge improves the care I provide, but the close patient contact allows me to identify areas that require further research." [ 29 ]

“Participants expressed how their involvement in the innovation increased their observation of their own clinical practice, brought the research back to practice, enhanced practice development and the clinical role overall while contributing to improved patient care.” [ 34 ]

Impacts on service provision and workforce

I. clinical service provision.

In addition to the identified impacts to patients (theme 1), changes in practice as a result of the clinical academic activity were also regarded as beneficial to the clinical service through improved care delivery and pathways . This included the introduction of new equipment, better integration of clinical teams, efficiencies, cost-savings and securing new clinical funding:

“Research positions supported projects that led to changes in service delivery models, with [one] manager commenting, ‘ … it’s amazed me that through the research grant that she got for that project, she has now generated for the Health Service recurrent money for the full time [implementation of the] … rural allied health model’.” [ 41 ]

“One participant’s intervention removes the need for GPs’ referral for physiotherapy, potentially saving ‘multimillion pounds’ across the NHS [National Health Service], and has subsequently been recognised in the NHS long-term plan.” [ 39 ]

“As a clinical academic midwife my aim is to bring more evidence into practice and assist other midwives in doing the same.” [ 29 ]

“Most of this reported activity focused on reviewing published evidence in relation to clinical practice but participants also reported involvement in facilitating/enhancing research skills in other clinicians.” [ 37 ]

“Release from the workplace, despite the employer grant, was in some cases problematic. Finding appropriately skilled staff to cover services particularly in highly specialised areas and, or recruiting to short term, often part time, vacancies were challenges. In contrast some managers saw this as an opportunity to give other staff the chance to act up, for succession planning, or worked creatively to make release possible.” [ 16 ]

“Protected time for the APNs [Advanced Practice Nurses] (i.e., at least one day a week) to engage in research activities was crucial to the program and, at times, difficult to achieve.” [ 32 ]

“On my return to work I was unable to continue to facilitate evidence-based practice as much as I would have liked due to time constraints. Within my working role there was no dedicated time to devote to evidence-based activity.” [ 37 ]

ii. Clinical academic workforce

Clinical academic infrastructure was described in terms of fellowship and career pathways. Steps were taken to ensure visibility of these opportunities to facilitate the development of research capacity. However, it was also noted that the absence of established clinical academic career structures resulted in a perceived lack of value of these skills and caused difficulties for clinical managers when trying to plan their service:

“Clinical and academic mentorship exposed the Chief Nurse Fellows to clinical academic career role models, which in turn raised the profile of this alternative career route.” [ 27 ]

“There’s a huge untapped workforce … with the right support and time we could be doing things more effectively and more efficiently, but that isn’t necessarily valued in organisations. We’ve got to see this many patients, (we’re) not using our skills of criticality, reflectivity; we’re not going to innovate and change practice.” [ 39 ]

"Imagine being able to continue my research and tie the results directly to clinical practice. I would like there to be an opportunity of this kind. However, there is a lack of services for nurses with higher academic qualifications who want to develop clinical practice.” [ 25 ]

“A culture that prioritises practice in the current context means that the doing of nursing work only is seen as core business. This, together with the need for managers and clinicians to make quick decisions in order to achieve short term goals, operates as a disincentive to rigorous research activity at ward level. Within this context, the expectations for those with a research component in their role, is at times unclear.” [ 30 ]

“Also, I think the option of having 0.5FTE [full-time equivalent) backfill was good, as it allowed greater flexibility for staff who have roles that are difficult to backfill full-time, also I thought it was useful to have more thinking time, and time to access support, get feedback etc. Full-time research can be very intense especially when you are not conditioned for it.” [ 13 ]

“I have a very supportive divisional head nurse and have been appointed into a trailblazer post; we haven’t got anything similar within the organisation. So there’s real potential to forge out innovative ways in which clinical academics can fulfil that remit of working in clinical practice and undertaking research, but also pave the way for others that want to come up.” [ 39 ]

“Biggest challenge: Getting managers on board, in particular releasing staff to take advantage of internship opportunities offered by HEE [Health Education England] Wessex, and recognising that research is essential to the core business of the Trust.” [ 17 ]

“It’s not the scheme, but greater staff access to relevant software (such as SPSS) would be useful.” [ 13 ]

Impacts to the research profile, culture and capacity

Research profile, culture and capacity were interlinked and several of the reported impacts spanned all aspects of this theme. However, winning research funding and other awards , publication of journal articles and clinical guidelines, and conference presentations were primarily considered as contributing to the organisation’s research profile:

“Since completing the programme - One Chief Nurse Fellow was the first UK nurse to be recognised by the Daisy Foundation and has received a Daisy Award for Extraordinary Nurses. Others have also received nominations and were shortlisted for national nursing awards. In addition, two of the projects are featured on The Academy of Fabulous NHS Stuff.” [ 27 ]

“As a result of the research activities, seven manuscripts were submitted and accepted for peer-reviewed publications.” [ 28 ]

“Improved attitudes towards research were noted by a clinician, ‘ … research isn’t this incredibly difficult thing that only very special people can do. Actually, it’s attainable by many and it was quite inspiring actually … I don’t know that that would have been their view prior to this position developing that profile.” [ 41 ]

“It’s about allowing people to engage with research and become enthused by it. It’s also about having the right leaders who are able to take the step back and say: ‘This is a good use of your time’. You can find better ways of giving care if you have a culture that values research.” [ 36 ]

“There is the perception that doing research is an ‘imposition, on clinical nursing staff, that it is not ‘real nursing work’; rather, it is a ‘luxury’. When invited by nurse researchers to participate in research activities, clinical nurses often say ‘I don’t have time for this’ and the general attitude is ‘we’ll think about it’, ‘if I have time’, or ‘tell us about the result’. Indeed, in some instances there is a perception amongst discussion group members that projects are undermined through gate-keeping behaviour and lack of support by the ‘sceptics’.” [ 30 ]

Clinical academics were able to promote evidence-based practice among their peers, for example by sharing resources and setting up journal clubs or other special interest groups. This facilitated a shift towards research becoming embedded in practice :

“I now exhort other colleagues to question day-to-day practice and we have introduced a journal club.” [ 29 ]

“The group process allowed scholars to participate in joint problem solving and enhanced their ability to apply current research to questions arising from clinical practice. The scholars were expected to serve as clinical resources to others in the healthcare system.” [ 33 ]

“We have increasing numbers of staff involved in research activity, studying for MRes and PhDs, and their research is closely related to their professional practice and aims to improve care. We have five research themes with [the healthcare organisation’s] nurses/midwives leading these and staff linking into these themes for their masters or doctoral study and we are starting to build groups of staff at different points on a clinical academic career pathway. Many staff present their research nationally and internationally and publish widely and some are part of national expert groups, linked to their research.” [ 17 ]

“People can choose where they want to work. They’ll be looking for organisations that are aspirational. So actually offering innovative career pathways that can intellectually challenge, but also have that direct patient care element, is going to be attractive to a lot of people.” [ 39 ]

Economic impacts

The funding required to support the clinical academic activity was generally sourced from outside the clinical organisation. Reported benefits of receiving research funding included dedicated time for research training and activity and bringing in additional money to the clinical service:

“Increased grant income – the value of successful non-medic research grants in 2014–2015 (the last financial year the outcome of all grant applications is known) was £923,495. Appointments of clinical academic posts were achieved by securing external grant funding, use of research capability funding to pump prime, and commitment to 50:50 funding from academic partners.” [ 17 ]

However, there were also issues where funding for research was not available, or was repurposed from clinical budgets :

“Management are more than happy to support research initiatives in principle, however, [they are] usually unable to provide [this] support as they have extremely tight budgets and other clinical management demands.” [ 30 ]

“The initiative was resourced by the reallocation of nursing/ODP vacancy funding within each clinical division.” [ 27 ]

“The amount of money saved by using the scanner and avoiding catheterisation was estimated to be around £1.2m per year. This did not include the cost of bacteraemia attributed to urinary tract infections. Savings associated with using a scanner, such as fewer treatment delays and overnight stays in hospital, were recognised as additional savings. The set up and running costs of a scanner were estimated to be met within six months to two years, after which significant ongoing cost efficiencies would be realised over its eight to ten year lifespan.” [ 17 ]

“The work had led to a decrease in patients’ clinical stay following surgery from six to four days, resulting in savings that allowed additional needs and demands to be met. We were very open and transparent with the data, and clinical practice changed. We calculated that there was a total of 28,000 bed-days saved per year as a result of this work.” [ 36 ]

“Well one of the big decisions I had to make about whether or not to accept the role (associated with a research training award) was the hours and the money because it’s moving to full time, which is fine... Therefore, by moving to full time but losing my enhancements I’ll be on around the same as I get on a good month when I have done lots of nights and weekends. But by working as I’m doing there won’t be any opportunity to do extra shifts, any overtime. So a lot of it was money.” [ 16 ]

“The presenters had to either self-fund their travel and conference registration, or apply for travel scholarships through internal or external opportunities.” [ 28 ]

Impacts on staff recruitment and retention

The lack of clinical academic career opportunities was noted as a challenge that individuals wishing to maintain a dual role needed to negotiate. This related to the sub-theme ‘balancing clinical and academic components of the role’ discussed in theme 2 (impacts for the clinical academic workforce), and was identified as a potential driver for individuals to return to full-time clinical work, or move into purely academic roles after completion of their clinical academic activity:

“The organisational system is perceived as unfamiliar with, and unsupportive of, non-physician clinician scientist positions, and, in consequence, active job crafting is necessary to obtain positions in which such individuals can exert both roles. Dual positions are often a personal combination of jobs instead of being offered from within one institution.” [ 31 ]

"Unfortunately, I wasn’t offered the chance to implement the results of my study in my organisation, due to the lack of development positions. So, as a result, I have applied for, and been given, a position as a teacher at the university college." [ 25 ]

A particular challenge for healthcare managers was the need to provide backfill or make other arrangements to enable the release of clinical staff for research activities. The need to recruit to backfill posts was discussed in theme 2 (impact to clinical service provision), specifically the sub-themes: release of clinical staff for research and return to clinical practice from a research role.

Several articles reported strategies to support clinical academics and increase awareness and access to clinical research opportunities. Where successful, it was suggested that these aided the retention and career progress of staff who were involved in clinical academic activity. Such strategies also contributed to job satisfaction and recruitment more generally and were closely linked with the impacts to the organisation’s research profile, research culture and capacity (theme 3):

“Since completing their year as a fellow, the entire pilot cohort still works within the organisation, with five of them having moved into junior leadership positions. Although we cannot assume that this would not have been their career trajectory had they not undertaken this fellowship, the skills developed and demonstrated through the initiative are essential for the job specifications of more senior posts.” [ 27 ]

“Interviewees reported that their department was seen as a more ‘attractive employer’ and was ‘attracting higher calibre staff’. Clinicians described staying in the health service to undertake research, ‘because these opportunities do exist, these really fabulous clinicians that we have just might stay’.” [ 41 ]

Impacts to knowledge exchange

Contributions to knowledge transfer were reported in all articles, and there was a large overlap with theme 3 (research profile, culture and capacity). Knowledge exchange activities included formal dissemination , such as conference presentations and posters, publications, being an invited speaker and winning prizes and awards that further highlighted the value of the work. It was recognised that there would be a delay between completion of the research activity and delivery of these research outputs:

“Interviewees provided numerous and diverse examples of presentations at grand rounds, poster presentations and oral presentations at both local and international conferences, including one interviewee who noted her team had presented their research project findings at three international and three local conferences. Another interviewee stated, ‘We have presented at a couple of conferences and we presented at a … convention or meeting and we actually got an award for our poster’.” [ 26 ]

“Individuals need time in the role as well to get some momentum, get the relationships in the department, get the research programs going and there's usually a delay until you start to see the pure research outputs.” [ 41 ]

“What I notice clearly is that I’m very well informed about scientific evidence and sharing this information with my colleagues. [I ask them] did you read this? And [I] pass on knowledge in that way.” [ 31 ]

“After being able to demonstrate the success of the approach locally, David was asked to help with a national roll out, organising with colleagues an audit of all 22 orthopaedic units across Scotland over 12 weeks.” [ 36 ]

Impacts to the clinical academic

Many of the themes and sub-themes of impact discussed above had also had a direct influence on the individuals involved in clinical academic activities. Developing networks and collaborations, discussed in theme 6 (knowledge exchange), and building local and external collaborations, discussed in theme 3 (research profile, culture and capacity), were similarly interpreted as individual clinical academics developing their networks and influence :

“I think the impact of the role on me has been quite incredible. … how much you learn about the different disciplines and then develop those networks … it’s been a huge learning curve.” [ 41 ]

Furthermore, clinical academics reported a change in their attitude to clinical practice, with greater reflection and questioning of established practice, which was also reflected in theme 1 (impacts for patients), particularly in terms of improved clinical practice and access to evidence-based healthcare:

“They felt that they had developed from “doers” to “thinkers”, in that they felt more aware of and reflective in relation to their colleagues … The nurses perceived progress in acquiring new knowledge, in spite of language barriers, and recognised the value of scientific knowledge for clinical practice. They experienced healthcare in a ‘new light’ through their knowledge development.” [ 25 ]

The development of research and leadership skills was identified as a beneficial effect of being involved in clinical academic activity. In some articles, it was suggested that this unlocked new career opportunities for the individuals involved, however in many instances there were no existing roles within the organisation for the research-active clinicians to aspire to, as discussed in theme 5 (recruitment and retention):

“The majority agreed or strongly agreed that they felt more confident developing a research question (94%/49), searching (87%/45) and appraising (90%/47) literature, challenging practice using evidence (85%/44), assisting others to use critical appraisal skills (79%/41) and engage in the clinical academic training pathway (87%/45).” [ 16 ]

“Despite their achievements during the PhD, many participants expressed anxieties about their future careers, having been made to move aside clinically in order to progress their academic ambitions, rather than being able to develop their academic and clinical skills in tandem. For example a dietician said: Recently I’ve had to step out of my area of expertise … I’m just doing general, allergies, weight management, which is not my area, but I need to pay the mortgage.” [ 39 ]

“It is actually exciting to learn that the world does not work the way you thought it did”. 70 [ 38 ]. “I want to do this for me, but I also want to do it for my daughters to show that women can be in science and can lead in these fields and yes we might have to juggle family things and children, but you can do it.” [ 39 ]

“What accomplishments are you most proud of? Knowing that I am now a subject expert – I get phone calls asking, `How would you handle this?’.” [ 40 ]

“When you are really interested in something or passionate about it, you use whatever time you have, even if it means writing your proposal after your regular hours at home.” [ 38 ]

“The time taken to do research is often underestimated and considerable time and effort is often put into preparing a grant application which ultimately may not be successful. Focusing on meeting deadlines and the progress of a project means that less attention can be given to other aspects of work roles. Ultimately, doing research without adequate support or funding becomes a constant juggle.” [ 30 ]

“The demanding expectations surrounding a clinical academic role were described by interviewees (participants and managers) and the characteristics and behaviours that were perceived as required for success. These included confidence, doggedness and resilience, reflective skills, criticality, and growing political know-how to better navigate organisations.” [ 16 ]

“Mentorship (from nursing, midwifery and medical colleagues), determination, tenacity, resilience and serendipity have been key factors in achieving success.” [ 17 ]

This systematic review identified 20 articles that discussed elements of the impact of clinical academic activity among healthcare professionals outside medicine. With the addition of a theme for the impacts to the clinical academic, all reported types of impact could be mapped to the VICTOR framework creating the following themes: impacts for patients; impacts for service provision and workforce; impacts to research profile, culture and capacity; economic impacts; impacts on staff recruitment and retention; impacts to knowledge exchange; and impacts to the clinical academic. In order to develop and evaluate clinical academic roles for healthcare professionals outside medicine, the range of impacts of this clinical academic activity need to be understood and valued by healthcare leaders and managers. This review has systematically identified and mapped the nature of the impacts reported in the literature, and forms a valuable resource for healthcare services looking to develop and evaluate these roles at local and national levels.

Within the main headings of impact described above, we identified several similar sub-themes that cut across the different categories of impact. Sub-themes described the content of each of the categories of impact and included perceived enablers of creating the desired impact and associated detrimental features. Notably, the sub-themes that reflected the challenge of maintaining or balancing the clinical and academic components of the role contributed to four main themes. Within clinical service provision (theme 2i), this related to the need for clinical services to manage both the release of clinical staff for research, and their return to clinical practice after research secondments. For the clinical academic workforce (theme 2ii), this led to individuals and team members being required to adapt to the different pace and duties associated with research and clinical work. The process of showcasing a visible clinical academic pathway (that incorporated both research and clinical activities) was identified as key feature of building research profile, culture and capacity (theme 3), and being able to offer suitable clinical academic posts was important for staff recruitment and retention (theme 5). Finally, being able to work and develop in both clinical and academic roles offered self-fulfilment for the individual clinical academic (theme 7). Similarly, the creation and implementation of new evidence was also a component of several themes, as was the development of collaborations and networks.

The multifaceted nature of research impact identified in this review illustrates that different aspects of clinical academic activity may be perceived as having both positive and negative impacts. Furthermore, these conflicting impacts may apply to the same individual or across different stakeholders. Different aspects of research impact may be more or less important in different contexts and the relative value of these different impacts will need to be considered to enable meaningful evaluation [ 42 – 44 ].

This systematic review was deliberately broad in scope to allow the identification of the whole range of impacts associated with clinical academic activity. The lack of an agreed and consistently used definition of clinical academic proves problematic and has been discussed elsewhere [ 45 , 46 ]. Clinical academic activity (defined here as the involvement of practising clinicians in research) in the included articles incorporated a range of research fellowships and research training programmes, and/or in-practice mentorship and research support. The aims of the articles varied. Many described and evaluated specific interventions that were aimed at increasing research activity among healthcare professional group(s), while others provided summary case studies of individuals who had been successful in a clinical academic role.

The inclusion of grey literature increased the breadth of the review, particularly given the finding that the impacts of non-medical healthcare research are underrepresented in the academic literature [ 47 ]. However, it is acknowledged that the methodological quality of the included institutional reports was lower than the standards for peer-reviewed publication. Data obtained from the institutional reports were largely positive reflections of strategies that had been put into place to encourage and support research activity among healthcare professionals outside medicine. Expressions of the less positive aspects of these strategies may therefore have been excluded or not collected by the authors. Importantly, the distribution of the seven identified themes of impacts did not differ between organisational reports and peer review journals, illustrating that the types of impact that were considered important by study participants and organisations were similar.

Existing reviews on the impact of clinical academic activity have focused on individual clinical groups within the non-medical workforce [ 10 ] or at the level of the healthcare institution [ 1 ]. Boaz et al. found that healthcare organisations which deliberately integrated research into their practice and fostered research engagement reported improved healthcare performance including clinical outcomes and processes of care, and our review also identified similar improvements. However, Boaz et al.’s review included papers focused primarily on research led by clinical academic doctors, and the impacts of the research processes on the clinical teams and the individuals involved was not reported [ 1 ]. Wenke and Mickan identified four themes of impact associated with allied health research positions based in clinical settings: increased individual research skills and participation; increased research activity; improved research culture and attitudes; and increased team and organisational level skills [ 10 ]. These features were also described within the current review under the themes: impact for patients; impacts to the clinical academic; impacts to research profile, culture and capacity; and impacts for service provision and workforce. In addition, we also identified impacts on staff recruitment and retention, knowledge exchange and economic impacts.

The distribution of impacts reported in the current review did not differ in relation to the clinical groups involved in each of the included articles, indicating that similar methods of capturing the impact of clinical academic research activity could be applied across the professions outside medicine, rather than being discipline-specific. A similar systematic review search strategy could also be applied to assess the reported impact of clinical academic activity by alternative and complementary therapy practitioners.

The impacts reported in the included articles were largely qualitative reports. Some studies incorporated quantitative data capture tools, such as the Research Capacity and Culture tool [ 48 , 49 ] and the WReN (Wessex Research Network) spider [ 50 , 51 ], or counts of publications, presentations and awards. The quantitative measures appeared to explore a discrete component of research impact, whereas the qualitative data provided a broad picture of the impacts in different contexts and uncovered both intended and unintended consequences of the research activity. Reed et al. proposed five impact evaluation typologies (experimental and statistical methods, systems analysis methods, textual, oral and arts-based methods, indicator-based approaches, and evidence synthesis approaches); our findings illustrate the first and third of these categories [ 44 ]. Future work should explore standardised methods of capturing the research impact that address the full range of impacts identified in this systematic review and are specific to the context of clinical academics outside medicine. With the desire for at least 1% of the UK NMAHP workforce to be clinical academics by 2030 [ 8 ], policy makers will need to consider, promote or potentially mitigate the different types of impacts that this systematic review identified in connection with these roles.

The VICTOR framework [ 22 ] was used to guide data extraction in the current review, with a priori modifications to include the impacts to the individual clinical academic and to merge the category relating to the organisation’s influence and reputation with the category for research profile, culture and capacity. No further refinements were made during the analysis process as all reported impacts were able to be mapped. While other research impact frameworks exist [ 14 , 44 ], our findings suggest that the VICTOR tool may be a good starting point for capturing the nature of research impact that is important for clinical academic healthcare research outside the medical professions, and it is already endorsed for use in the UK [ 23 ]. The identification of sub-themes that crossed one or more of the main impact themes indicate that these may be key areas to explore, particularly for organisations looking to support and increase academic activity among these clinical groups.

Limitations

The systematic review team comprised research-active clinicians from professions outside medicine, and therefore the review took place through this lens. Steps were taken to facilitate objectivity, including: a clearly defined protocol [ 18 ]; two or more reviewers independently conducting each stage of the review; inclusion of reviewers with different levels of clinical and research experience; and the provision of oversight by senior (clinically-active) academics. We acknowledge that the thematic analysis and coding of the extracted data may have been interpreted differently by reviewers from different backgrounds. Furthermore, the definition of clinical academic activity used in our review differs from that used elsewhere [ 45 , 52 ]. However, the absence of an agreed definition has been recognised [ 45 ] and the overlap of our findings with the existing literature support our review processes and findings [ 1 , 10 ].

As with other reviews of research impact, there is a risk that relevant studies were excluded due to poor indexing in the medical databases [ 14 ]. We took the additional step of including grey literature searches in both established repositories and through a naïve web search engine in an attempt to maximise the identification of eligible articles, but accept that articles may still have been missed if they were not identified through these mechanisms. We did not formally screen the reference lists of the included articles, and accept that this may have yielded additional studies.

The MMAT tool used for methodological assessment of the included articles was designed for the appraisal of mixed methods studies [ 20 ], although our review included mixed methods, qualitative, and quantitative articles. The MMAT was chosen to allow the same criteria to be applied across all included articles using the relevant sub-sections as appropriate. Quality assessment scores were not used to determine how the extracted data was incorporated into the thematic synthesis. We acknowledge that the presented synthesis therefore includes the findings from studies and organisational reports across the spectrum of methodological quality. However, no theme or sub-theme solely comprised data from articles that were assessed to be of lower quality.

The application of alternative impact frameworks would have yielded different theme headings, as these were taken directly from the VICTOR terminology. However, the use of an established impact assessment tool aided transparency and consistency of data extraction and categorisation. The coding and resulting theme descriptions were created through an inductive process that explored the meaning of the extracted data, rather than looking to specifically fit it to the VICTOR headings. The descriptions of the content of each theme illustrate the available data.

Finally, the aim of our review was to capture the range of impacts associated with clinical academic activity outside medicine. We have highlighted the key themes of impact and described the characteristic content of these themes. While this work contributes to the existing discussion around research impact, it does not explore the utility of capturing and comparing the reported impacts using a standardised method in a clinical research setting.

Twenty articles were identified that reported the impact of clinical academic activity among the healthcare professions outside medicine. These impacts could be mapped using a modified VICTOR framework and were classified as: impacts for patients; impacts for service provision and workforce; impacts to research profile, culture and capacity; economic impacts; impacts on staff recruitment and retention; impacts to knowledge exchange; and impacts to the clinical academic. With our addition of impacts to clinical academics, the VICTOR tool may be a useful starting point for individuals and organisations to record the impact of their research activity, although further work is needed to establish its utility. This review identified several sub-themes of impact that crossed one or more of the main themes: the challenges and benefits of balancing clinical and academic roles; the creation and implementation of new research evidence; and the development of collaborations and networks. These are likely to be key areas for organisations to explore when looking to support and increase academic activity among healthcare professionals outside medicine.

Acknowledgements

Thank you to Clare Leon-Villapalos, Melanie Almonte, Jinju James and Gemma Clunie for their support with screening, data extraction and quality assessment; and to Lisa Gardner for her assistance in refining the search strategy.

Abbreviations

Authors’ contributions.

LN, MW and CMA designed the review. LN, JC, OFC, LS and LB completed the title and abstract screening. LN, AA, MC, LS, OFC, MA and LBS completed the full text screening. LN, AA, LBS, CL, LS, MC, JJ, LB and JC completed quality assessment and data extraction. Disagreements during screening were resolved by MW and CMA. Differences in data extraction were reviewed by MS and CH. LN, AA, LB, LBS, MC, JC, MS and CH thematically analysed the extracted data, and LN, MW and CMA completed the thematic synthesis. LN drafted the manuscript with major contributions from MW and CMA. All authors reviewed and approved the final manuscript.

This research was funded by the NIHR Imperial Biomedical Research Centre (BRC). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Availability of data and materials

Declarations.

Ethics approval was not required for this systematic review.

Not applicable.

The authors declare no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

• Open access
• Published: 23 April 2024

Designing feedback processes in the workplace-based learning of undergraduate health professions education: a scoping review

• Javiera Fuentes-Cimma 1 , 2 ,
• Dominique Sluijsmans 3 ,
• Arnoldo Riquelme 4 ,
• Ignacio Villagran   ORCID: orcid.org/0000-0003-3130-8326 1 ,
• Lorena Isbej   ORCID: orcid.org/0000-0002-4272-8484 2 , 5 ,
• María Teresa Olivares-Labbe 6 &
• Sylvia Heeneman 7  

BMC Medical Education volume  24 , Article number:  440 ( 2024 ) Cite this article

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Metrics details

Feedback processes are crucial for learning, guiding improvement, and enhancing performance. In workplace-based learning settings, diverse teaching and assessment activities are advocated to be designed and implemented, generating feedback that students use, with proper guidance, to close the gap between current and desired performance levels. Since productive feedback processes rely on observed information regarding a student's performance, it is imperative to establish structured feedback activities within undergraduate workplace-based learning settings. However, these settings are characterized by their unpredictable nature, which can either promote learning or present challenges in offering structured learning opportunities for students. This scoping review maps literature on how feedback processes are organised in undergraduate clinical workplace-based learning settings, providing insight into the design and use of feedback.

A scoping review was conducted. Studies were identified from seven databases and ten relevant journals in medical education. The screening process was performed independently in duplicate with the support of the StArt program. Data were organized in a data chart and analyzed using thematic analysis. The feedback loop with a sociocultural perspective was used as a theoretical framework.

The search yielded 4,877 papers, and 61 were included in the review. Two themes were identified in the qualitative analysis: (1) The organization of the feedback processes in workplace-based learning settings, and (2) Sociocultural factors influencing the organization of feedback processes. The literature describes multiple teaching and assessment activities that generate feedback information. Most papers described experiences and perceptions of diverse teaching and assessment feedback activities. Few studies described how feedback processes improve performance. Sociocultural factors such as establishing a feedback culture, enabling stable and trustworthy relationships, and enhancing student feedback agency are crucial for productive feedback processes.

Conclusions

This review identified concrete ideas regarding how feedback could be organized within the clinical workplace to promote feedback processes. The feedback encounter should be organized to allow follow-up of the feedback, i.e., working on required learning and performance goals at the next occasion. The educational programs should design feedback processes by appropriately planning subsequent tasks and activities. More insight is needed in designing a full-loop feedback process, in which specific attention is needed in effective feedforward practices.

Peer Review reports

The design of effective feedback processes in higher education has been important for educators and researchers and has prompted numerous publications discussing potential mechanisms, theoretical frameworks, and best practice examples over the past few decades. Initially, research on feedback primarily focused more on teachers and feedback delivery, and students were depicted as passive feedback recipients [ 1 , 2 , 3 ]. The feedback conversation has recently evolved to a more dynamic emphasis on interaction, sense-making, outcomes in actions, and engagement with learners [ 2 ]. This shift aligns with utilizing the feedback process as a form of social interaction or dialogue to enhance performance [ 4 ]. Henderson et al. (2019) defined feedback processes as "where the learner makes sense of performance-relevant information to promote their learning." (p. 17). When a student grasps the information concerning their performance in connection to the desired learning outcome and subsequently takes suitable action, a feedback loop is closed so the process can be regarded as successful [ 5 , 6 ].

Hattie and Timperley (2007) proposed a comprehensive perspective on feedback, the so-called feedback loop, to answer three key questions: “Where am I going? “How am I going?” and “Where to next?” [ 7 ]. Each question represents a key dimension of the feedback loop. The first is the feed-up, which consists of setting learning goals and sharing clear objectives of learners' performance expectations. While the concept of the feed-up might not be consistently included in the literature, it is considered to be related to principles of effective feedback and goal setting within educational contexts [ 7 , 8 ]. Goal setting allows students to focus on tasks and learning, and teachers to have clear intended learning outcomes to enable the design of aligned activities and tasks in which feedback processes can be embedded [ 9 ]. Teachers can improve the feed-up dimension by proposing clear, challenging, but achievable goals [ 7 ]. The second dimension of the feedback loop focuses on feedback and aims to answer the second question by obtaining information about students' current performance. Different teaching and assessment activities can be used to obtain feedback information, and it can be provided by a teacher or tutor, a peer, oneself, a patient, or another coworker. The last dimension of the feedback loop is the feedforward, which is specifically associated with using feedback to improve performance or change behaviors [ 10 ]. Feedforward is crucial in closing the loop because it refers to those specific actions students must take to reduce the gap between current and desired performance [ 7 ].

From a sociocultural perspective, feedback processes involve a social practice consisting of intricate relationships within a learning context [ 11 ]. The main feature of this approach is that students learn from feedback only when the feedback encounter includes generating, making sense of, and acting upon the information given [ 11 ]. In the context of workplace-based learning (WBL), actionable feedback plays a crucial role in enabling learners to leverage specific feedback to enhance their performance, skills, and conceptual understandings. The WBL environment provides students with a valuable opportunity to gain hands-on experience in authentic clinical settings, in which students work more independently on real-world tasks, allowing them to develop and exhibit their competencies [ 3 ]. However, WBL settings are characterized by their unpredictable nature, which can either promote self-directed learning or present challenges in offering structured learning opportunities for students [ 12 ]. Consequently, designing purposive feedback opportunities within WBL settings is a significant challenge for clinical teachers and faculty.

In undergraduate clinical education, feedback opportunities are often constrained due to the emphasis on clinical work and the absence of dedicated time for teaching [ 13 ]. Students are expected to perform autonomously under supervision, ideally achieved by giving them space to practice progressively and providing continuous instances of constructive feedback [ 14 ]. However, the hierarchy often present in clinical settings places undergraduate students in a dependent position, below residents and specialists [ 15 ]. Undergraduate or junior students may have different approaches to receiving and using feedback. If their priority is meeting the minimum standards given pass-fail consequences and acting merely as feedback recipients, other incentives may be needed to engage with the feedback processes because they will need more learning support [ 16 , 17 ]. Adequate supervision and feedback have been recognized as vital educational support in encouraging students to adopt a constructive learning approach [ 18 ]. Given that productive feedback processes rely on observed information regarding a student's performance, it is imperative to establish structured teaching and learning feedback activities within undergraduate WBL settings.

Despite the extensive research on feedback, a significant proportion of published studies involve residents or postgraduate students [ 19 , 20 ]. Recent reviews focusing on feedback interventions within medical education have clearly distinguished between undergraduate medical students and residents or fellows [ 21 ]. To gain a comprehensive understanding of initiatives related to actionable feedback in the WBL environment for undergraduate health professions, a scoping review of the existing literature could provide insight into how feedback processes are designed in that context. Accordingly, the present scoping review aims to answer the following research question: How are the feedback processes designed in the undergraduate health professions' workplace-based learning environments?

A scoping review was conducted using the five-step methodological framework proposed by Arksey and O'Malley (2005) [ 22 ], intertwined with the PRISMA checklist extension for scoping reviews to provide reporting guidance for this specific type of knowledge synthesis [ 23 ]. Scoping reviews allow us to study the literature without restricting the methodological quality of the studies found, systematically and comprehensively map the literature, and identify gaps [ 24 ]. Furthermore, a scoping review was used because this topic is not suitable for a systematic review due to the varied approaches described and the large difference in the methodologies used [ 21 ].

Search strategy

With the collaboration of a medical librarian, the authors used the research question to guide the search strategy. An initial meeting was held to define keywords and search resources. The proposed search strategy was reviewed by the research team, and then the study selection was conducted in two steps:

An online database search included Medline/PubMed, Web of Science, CINAHL, Cochrane Library, Embase, ERIC, and PsycINFO.

A directed search of ten relevant journals in the health sciences education field (Academic Medicine, Medical Education, Advances in Health Sciences Education, Medical Teacher, Teaching and Learning in Medicine, Journal of Surgical Education, BMC Medical Education, Medical Education Online, Perspectives on Medical Education and The Clinical Teacher) was performed.

The research team conducted a pilot or initial search before the full search to identify if the topic was susceptible to a scoping review. The full search was conducted in November 2022. One team member (MO) identified the papers in the databases. JF searched in the selected journals. Authors included studies written in English due to feasibility issues, with no time span limitation. After eliminating duplicates, two research team members (JF and IV) independently reviewed all the titles and abstracts using the exclusion and inclusion criteria described in Table  2 and with the support of the screening application StArT [ 25 ]. A third team member (AR) reviewed the titles and abstracts when the first two disagreed. The reviewer team met again at a midpoint and final stage to discuss the challenges related to study selection. Articles included for full-text review were exported to Mendeley. JF independently screened all full-text papers, and AR verified 10% for inclusion. The authors did not analyze study quality or risk of bias during study selection, which is consistent with conducting a scoping review.

The analysis of the results incorporated a descriptive summary and a thematic analysis, which was carried out to clarify and give consistency to the results' reporting [ 22 , 24 , 26 ]. Quantitative data were analyzed to report the characteristics of the studies, populations, settings, methods, and outcomes. Qualitative data were labeled, coded, and categorized into themes by three team members (JF, SH, and DS). The feedback loop framework with a sociocultural perspective was used as the theoretical framework to analyze the results.

The keywords used for the search strategies were as follows:

Clinical clerkship; feedback; formative feedback; health professions; undergraduate medical education; workplace.

Definitions of the keywords used for the present review are available in Appendix 1 .

As an example, we included the search strategy that we used in the Medline/PubMed database when conducting the full search:

("Formative Feedback"[Mesh] OR feedback) AND ("Workplace"[Mesh] OR workplace OR "Clinical Clerkship"[Mesh] OR clerkship) AND (("Education, Medical, Undergraduate"[Mesh] OR undergraduate health profession*) OR (learner* medical education)).

Inclusion and exclusion criteria

The following inclusion and exclusion criteria were used (Table  1 ):

Data extraction

The research group developed a data-charting form to organize the information obtained from the studies. The process was iterative, as the data chart was continuously reviewed and improved as necessary. In addition, following Levac et al.'s recommendation (2010), the three members involved in the charting process (JF, LI, and IV) independently reviewed the first five selected studies to determine whether the data extraction was consistent with the objectives of this scoping review and to ensure consistency. Then, the team met using web-conferencing software (Zoom; CA, USA) to review the results and adjust any details in the chart. The same three members extracted data independently from all the selected studies, considering two members reviewing each paper [ 26 ]. A third team member was consulted if any conflict occurred when extracting data. The data chart identified demographic patterns and facilitated the data synthesis. To organize data, we used a shared Excel spreadsheet, considering the following headings: title, author(s), year of publication, journal/source, country/origin, aim of the study, research question (if any), population/sample size, participants, discipline, setting, methodology, study design, data collection, data analysis, intervention, outcomes, outcomes measure, key findings, and relation of findings to research question.

Additionally, all the included papers were uploaded to AtlasTi v19 to facilitate the qualitative analysis. Three team members (JF, SH, and DS) independently coded the first six papers to create a list of codes to ensure consistency and rigor. The group met several times to discuss and refine the list of codes. Then, one member of the team (JF) used the code list to code all the rest of the papers. Once all papers were coded, the team organized codes into descriptive themes aligned with the research question.

Preliminary results were shared with a number of stakeholders (six clinical teachers, ten students, six medical educators) to elicit their opinions as an opportunity to build on the evidence and offer a greater level of meaning, content expertise, and perspective to the preliminary findings [ 26 ]. No quality appraisal of the studies is considered for this scoping review, which aligns with the frameworks for guiding scoping reviews [ 27 ].

The datasets analyzed during the current study are available from the corresponding author upon request.

A database search resulted in 3,597 papers, and the directed search of the most relevant journals in the health sciences education field yielded 2,096 titles. An example of the results of one database is available in Appendix 2 . Of the titles obtained, 816 duplicates were eliminated, and the team reviewed the titles and abstracts of 4,877 papers. Of these, 120 were selected for full-text review. Finally, 61 papers were included in this scoping review (Fig.  1 ), as listed in Table  2 .

PRISMA flow diagram for included studies, incorporating records identified through the database and direct searching

The selected studies were published between 1986 and 2022, and seventy-five percent (46) were published during the last decade. Of all the articles included in this review, 13% (8) were literature reviews: one integrative review [ 28 ] and four scoping reviews [ 29 , 30 , 31 , 32 ]. Finally, fifty-three (87%) original or empirical papers were included (i.e., studies that answered a research question or achieved a research purpose through qualitative or quantitative methodologies) [ 15 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 ].

Table 2 summarizes the papers included in the present scoping review, and Table  3 describes the characteristics of the included studies.

The thematic analysis resulted in two themes: (1) the organization of feedback processes in WBL settings, and (2) sociocultural factors influencing the organization of feedback processes. Table 4 gives a summary of the themes and subthemes.

Organization of feedback processes in WBL settings.

Setting learning goals (i.e., feed-up dimension).

Feedback that focuses on students' learning needs and is based on known performance standards enhances student response and setting learning goals [ 30 ]. Discussing goals and agreements before starting clinical practice enhances students' feedback-seeking behavior [ 39 ] and responsiveness to feedback [ 83 ]. Farrell et al. (2017) found that teacher-learner co-constructed learning goals enhance feedback interactions and help establish educational alliances, improving the learning experience [ 50 ]. However, Kiger (2020) found that sharing individualized learning plans with teachers aligned feedback with learning goals but did not improve students' perceived use of feedback [ 64 ]

Two papers of this set pointed out the importance of goal-oriented feedback, a dynamic process that depends on discussion of goal setting between teachers and students [ 50 ] and influences how individuals experience, approach, and respond to upcoming learning activities [ 34 ]. Goal-oriented feedback should be embedded in the learning experience of the clinical workplace, as it can enhance students' engagement in safe feedback dialogues [ 50 ]. Ideally, each feedback encounter in the WBL context should conclude, in addition to setting a plan of action to achieve the desired goal, with a reflection on the next goal [ 50 ].

Feedback strategies within the WBL environment. (i.e., feedback dimension)

In undergraduate WBL environments, there are several tasks and feedback opportunities organized in the undergraduate clinical workplace that can enable feedback processes:

Questions from clinical teachers to students are a feedback strategy [ 74 ]. There are different types of questions that the teacher can use, either to clarify concepts, to reach the correct answer, or to facilitate self-correction [ 74 ]. Usually, questions can be used in conjunction with other communication strategies, such as pauses, which enable self-correction by the student [ 74 ]. Students can also ask questions to obtain feedback on their performance [ 54 ]. However, question-and-answer as a feedback strategy usually provides information on either correct or incorrect answers and fewer suggestions for improvement, rendering it less constructive as a feedback strategy [ 82 ].

Direct observation of performance by default is needed to be able to provide information to be used as input in the feedback process [ 33 , 46 , 49 , 86 ]. In the process of observation, teachers can include clarification of objectives (i.e., feed-up dimension) and suggestions for an action plan (i.e., feedforward) [ 50 ]. Accordingly, Schopper et al. (2016) showed that students valued being observed while interviewing patients, as they received feedback that helped them become more efficient and effective as interviewers and communicators [ 33 ]. Moreover, it is widely described that direct observation improves feedback credibility [ 33 , 40 , 84 ]. Ideally, observation should be deliberate [ 33 , 83 ], informal or spontaneous [ 33 ], conducted by a (clinical) expert [ 46 , 86 ], provided immediately after the observation, and clinical teacher if possible, should schedule or be alert on follow-up observations to promote closing the gap between current and desired performance [ 46 ].

Workplace-based assessments (WBAs), by definition, entail direct observation of performance during authentic task demonstration [ 39 , 46 , 56 , 87 ]. WBAs can significantly impact behavioral change in medical students [ 55 ]. Organizing and designing formative WBAs and embedding these in a feedback dialogue is essential for effective learning [ 31 ].

Summative organization of WBAs is a well described barrier for feedback uptake in the clinical workplace [ 35 , 46 ]. If feedback is perceived as summative, or organized as a pass-fail decision, students may be less inclined to use the feedback for future learning [ 52 ]. According to Schopper et al. (2016), using a scale within a WBA makes students shift their focus during the clinical interaction and see it as an assessment with consequences [ 33 ]. Harrison et al. (2016) pointed out that an environment that only contains assessments with a summative purpose will not lead to a culture of learning and improving performance [ 56 ]. The recommendation is to separate the formative and summative WBAs, as feedback in summative instances is often not recognized as a learning opportunity or an instance to seek feedback [ 54 ]. In terms of the design, an organizational format is needed to clarify to students how formative assessments can promote learning from feedback [ 56 ]. Harrison et al. (2016) identified that enabling students to have more control over their assessments, designing authentic assessments, and facilitating long-term mentoring could improve receptivity to formative assessment feedback [ 56 ].

Multiple WBA instruments and systems are reported in the literature. Sox et al. (2014) used a detailed evaluation form to help students improve their clinical case presentation skills. They found that feedback on oral presentations provided by supervisors using a detailed evaluation form improved clerkship students’ oral presentation skills [ 78 ]. Daelmans et al. (2006) suggested that a formal in-training assessment programme composed by 19 assessments that provided structured feedback, could promote observation and verbal feedback opportunities through frequent assessments [ 43 ]. However, in this setting, limited student-staff interactions still hindered feedback follow-up [ 43 ]. Designing frequent WBA improves feedback credibility [ 28 ]. Long et al. (2021) emphasized that students' responsiveness to assessment feedback hinges on its perceived credibility, underlining the importance of credibility for students to effectively engage and improve their performance [ 31 ].

The mini-CEX is one of the most widely described WBA instruments in the literature. Students perceive that the mini-CEX allows them to be observed and encourages the development of interviewing skills [ 33 ]. The mini-CEX can provide feedback that improves students' clinical skills [ 58 , 60 ], as it incorporates a structure for discussing the student's strengths and weaknesses and the design of a written action plan [ 39 , 80 ]. When mini-CEXs are incorporated as part of a system of WBA, such as programmatic assessment, students feel confident in seeking feedback after observation, and being systematic allows for follow-up [ 39 ]. Students suggested separating grading from observation and using the mini-CEX in more informal situations [ 33 ].

Clinical encounter cards allow students to receive weekly feedback and make them request more feedback as the clerkship progresses [ 65 ]. Moreover, encounter cards stimulate that feedback is given by supervisors, and students are more satisfied with the feedback process [ 72 ]. With encounter card feedback, students are responsible for asking a supervisor for feedback before a clinical encounter, and supervisors give students written and verbal comments about their performance after the encounter [ 42 , 72 ]. Encounter cards enhance the use of feedback and add approximately one minute to the length of the clinical encounter, so they are well accepted by students and supervisors [ 72 ]. Bennett (2006) identified that Instant Feedback Cards (IFC) facilitated mid-rotation feedback [ 38 ]. Feedback encounter card comments must be discussed between students and supervisors; otherwise, students may perceive it as impersonal, static, formulaic, and incomplete [ 59 ].

Self-assessments can change students' feedback orientation, transforming them into coproducers of learning [ 68 ]. Self-assessments promote the feedback process [ 68 ]. Some articles emphasize the importance of organizing self-assessments before receiving feedback from supervisors, for example, discussing their appraisal with the supervisor [ 46 , 52 ]. In designing a feedback encounter, starting with a self-assessment as feed-up, discussing with the supervisor, and identifying areas for improvement is recommended, as part of the feedback dialogue [ 68 ].

Peer feedback as an organized activity allows students to develop strategies to observe and give feedback to other peers [ 61 ]. Students can act as the feedback provider or receiver, fostering understanding of critical comments and promoting evaluative judgment for their clinical practice [ 61 ]. Within clerkships, enabling the sharing of feedback information among peers allows for a better understanding and acceptance of feedback [ 52 ]. However, students can find it challenging to take on the peer assessor/feedback provider role, as they prefer to avoid social conflicts [ 28 , 61 ]. Moreover, it has been described that they do not trust the judgment of their peers because they are not experts, although they know the procedures, tasks, and steps well and empathize with their peer status in the learning process [ 61 ].

Bedside-teaching encounters (BTEs) provide timely feedback and are an opportunity for verbal feedback during performance [ 74 ]. Rizan et al. (2014) explored timely feedback delivered within BTEs and determined that it promotes interaction that constructively enhances learner development through various corrective strategies (e.g., question and answers, pauses, etc.). However, if the feedback given during the BTEs was general, unspecific, or open-ended, it could go unnoticed [ 74 ]. Torre et al. (2005) investigated which integrated feedback activities and clinical tasks occurred on clerkship rotations and assessed students' perceived quality in each teaching encounter [ 81 ]. The feedback activities reported were feedback on written clinical history, physical examination, differential diagnosis, oral case presentation, a daily progress note, and bedside feedback. Students considered all these feedback activities high-quality learning opportunities, but they were more likely to receive feedback when teaching was at the bedside than at other teaching locations [ 81 ].

Case presentations are an opportunity for feedback within WBL contexts [ 67 , 73 ]. However, both students and supervisors struggled to identify them as feedback moments, and they often dismissed questions and clarifications around case presentations as feedback [ 73 ]. Joshi (2017) identified case presentations as a way for students to ask for informal or spontaneous supervisor feedback [ 63 ].

Organization of follow-up feedback and action plans (i.e., feedforward dimension).

Feedback that generates use and response from students is characterized by two-way communication and embedded in a dialogue [ 30 ]. Feedback must be future-focused [ 29 ], and a feedback encounter should be followed by planning the next observation [ 46 , 87 ]. Follow-up feedback could be organized as a future self-assessment, reflective practice by the student, and/or a discussion with the supervisor or coach [ 68 ]. The literature describes that a lack of student interaction with teachers makes follow-up difficult [ 43 ]. According to Haffling et al. (2011), follow-up feedback sessions improve students' satisfaction with feedback compared to students who do not have follow-up sessions. In addition, these same authors reported that a second follow-up session allows verification of improved performances or confirmation that the skill was acquired [ 55 ].

Although feedback encounter forms are a recognized way of obtaining information about performance (i.e., feedback dimension), the literature does not provide many clear examples of how they may impact the feedforward phase. For example, Joshi et al. (2016) consider a feedback form with four fields (i.e., what did you do well, advise the student on what could be done to improve performance, indicate the level of proficiency, and personal details of the tutor). In this case, the supervisor highlighted what the student could improve but not how, which is the missing phase of the co-constructed action plan [ 63 ]. Whichever WBA instrument is used in clerkships to provide feedback, it should include a "next steps" box [ 44 ], and it is recommended to organize a long-term use of the WBA instrument so that those involved get used to it and improve interaction and feedback uptake [ 55 ]. RIME-based feedback (Reporting, Interpreting, Managing, Educating) is considered an interesting example, as it is perceived as helpful to students in knowing what they need to improve in their performance [ 44 ]. Hochberg (2017) implemented formative mid-clerkship assessments to enhance face-to-face feedback conversations and co-create an improvement plan [ 59 ]. Apps for structuring and storing feedback improve the amount of verbal and written feedback. In the study of Joshi et al. (2016), a reasonable proportion of students (64%) perceived that these app tools help them improve their performance during rotations [ 63 ].

Several studies indicate that an action plan as part of the follow-up feedback is essential for performance improvement and learning [ 46 , 55 , 60 ]. An action plan corresponds to an agreed-upon strategy for improving, confirming, or correcting performance. Bing-You et al. (2017) determined that only 12% of the articles included in their scoping review incorporated an action plan for learners [ 32 ]. Holmboe et al. (2004) reported that only 11% of the feedback sessions following a mini-CEX included an action plan [ 60 ]. Suhoyo et al. (2017) also reported that only 55% of mini-CEX encounters contained an action plan [ 80 ]. Other authors reported that action plans are not commonly offered during feedback encounters [ 77 ]. Sokol-Hessner et al. (2010) implemented feedback card comments with a space to provide written feedback and a specific action plan. In their results, 96% contained positive comments, and only 5% contained constructive comments [ 77 ]. In summary, although the recommendation is to include a “next step” box in the feedback instruments, evidence shows these items are not often used for constructive comments or action plans.

Sociocultural factors influencing the organization of feedback processes.

Multiple sociocultural factors influence interaction in feedback encounters, promoting or hampering the productivity of the feedback processes.

Clinical learning culture

Context impacts feedback processes [ 30 , 82 ], and there are barriers to incorporating actionable feedback in the clinical learning context. The clinical learning culture is partly determined by the clinical context, which can be unpredictable [ 29 , 46 , 68 ], as the available patients determine learning opportunities. Supervisors are occupied by a high workload, which results in limited time or priority for teaching [ 35 , 46 , 48 , 55 , 68 , 83 ], hindering students’ feedback-seeking behavior [ 54 ], and creating a challenge for the balance between patient care and student mentoring [ 35 ].

Clinical workplace culture does not always purposefully prioritize instances for feedback processes [ 83 , 84 ]. This often leads to limited direct observation [ 55 , 68 ] and the provision of poorly informed feedback. It is also evident that this affects trust between clinical teachers and students [ 52 ]. Supervisors consider feedback a low priority in clinical contexts [ 35 ] due to low compensation and lack of protected time [ 83 ]. In particular, lack of time appears to be the most significant and well-known barrier to frequent observation and workplace feedback [ 35 , 43 , 48 , 62 , 67 , 83 ].

The clinical environment is hierarchical [ 68 , 80 ] and can make students not consider themselves part of the team and feel like a burden to their supervisor [ 68 ]. This hierarchical learning environment can lead to unidirectional feedback, limit dialogue during feedback processes, and hinder the seeking, uptake, and use of feedback [ 67 , 68 ]. In a learning culture where feedback is not supported, learners are less likely to want to seek it and feel motivated and engaged in their learning [ 83 ]. Furthermore, it has been identified that clinical supervisors lack the motivation to teach [ 48 ] and the intention to observe or reobserve performance [ 86 ].

In summary, the clinical context and WBL culture do not fully use the potential of a feedback process aimed at closing learning gaps. However, concrete actions shown in the literature can be taken to improve the effectiveness of feedback by organizing the learning context. For example, McGinness et al. (2022) identified that students felt more receptive to feedback when working in a safe, nonjudgmental environment [ 67 ]. Moreover, supervisors and trainees identified the learning culture as key to establishing an open feedback dialogue [ 73 ]. Students who perceive culture as supportive and formative can feel more comfortable performing tasks and more willing to receive feedback [ 73 ].

Relationships

There is a consensus in the literature that trusting and long-term relationships improve the chances of actionable feedback. However, relationships between supervisors and students in the clinical workplace are often brief and not organized as more longitudinally [ 68 , 83 ], leaving little time to establish a trustful relationship [ 68 ]. Supervisors change continuously, resulting in short interactions that limit the creation of lasting relationships over time [ 50 , 68 , 83 ]. In some contexts, it is common for a student to have several supervisors who have their own standards in the observation of performance [ 46 , 56 , 68 , 83 ]. A lack of stable relationships results in students having little engagement in feedback [ 68 ]. Furthermore, in case of summative assessment programmes, the dual role of supervisors (i.e., assessing and giving feedback) makes feedback interactions perceived as summative and can complicate the relationship [ 83 ].

Repeatedly, the articles considered in this review describe that long-term and stable relationships enable the development of trust and respect [ 35 , 62 ] and foster feedback-seeking behavior [ 35 , 67 ] and feedback-giver behavior [ 39 ]. Moreover, constructive and positive relationships enhance students´ use of and response to feedback [ 30 ]. For example, Longitudinal Integrated Clerkships (LICs) promote stable relationships, thus enhancing the impact of feedback [ 83 ]. In a long-term trusting relationship, feedback can be straightforward and credible [ 87 ], there are more opportunities for student observation, and the likelihood of follow-up and actionable feedback improves [ 83 ]. Johnson et al. (2020) pointed out that within a clinical teacher-student relationship, the focus must be on establishing psychological safety; thus, the feedback conversations might be transformed [ 62 ].

Stable relationships enhance feedback dialogues, which offer an opportunity to co-construct learning and propose and negotiate aspects of the design of learning strategies [ 62 ].

Students as active agents in the feedback processes

The feedback response learners generate depends on the type of feedback information they receive, how credible the source of feedback information is, the relationship between the receiver and the giver, and the relevance of the information delivered [ 49 ]. Garino (2020) noted that students who are most successful in using feedback are those who do not take criticism personally, who understand what they need to improve and know they can do so, who value and feel meaning in criticism, are not surprised to receive it, and who are motivated to seek new feedback and use effective learning strategies [ 52 ]. Successful users of feedback ask others for help, are intentional about their learning, know what resources to use and when to use them, listen to and understand a message, value advice, and use effective learning strategies. They regulate their emotions, find meaning in the message, and are willing to change [ 52 ].

Student self-efficacy influences the understanding and use of feedback in the clinical workplace. McGinness et al. (2022) described various positive examples of self-efficacy regarding feedback processes: planning feedback meetings with teachers, fostering good relationships with the clinical team, demonstrating interest in assigned tasks, persisting in seeking feedback despite the patient workload, and taking advantage of opportunities for feedback, e.g., case presentations [ 67 ].

When students are encouraged to seek feedback aligned with their own learning objectives, they promote feedback information specific to what they want to learn and improve and enhance the use of feedback [ 53 ]. McGinness et al. (2022) identified that the perceived relevance of feedback information influenced the use of feedback because students were more likely to ask for feedback if they perceived that the information was useful to them. For example, if students feel part of the clinical team and participate in patient care, they are more likely to seek feedback [ 17 ].

Learning-oriented students aim to seek feedback to achieve clinical competence at the expected level [ 75 ]; they focus on improving their knowledge and skills and on professional development [ 17 ]. Performance-oriented students aim not to fail and to avoid negative feedback [ 17 , 75 ].

For effective feedback processes, including feed-up, feedback, and feedforward, the student must be feedback-oriented, i.e., active, seeking, listening to, interpreting, and acting on feedback [ 68 ]. The literature shows that feedback-oriented students are coproducers of learning [ 68 ] and are more involved in the feedback process [ 51 ]. Additionally, students who are metacognitively aware of their learning process are more likely to use feedback to reduce gaps in learning and performance [ 52 ]. For this, students must recognize feedback when it occurs and understand it when they receive it. Thus, it is important to organize training and promote feedback literacy so that students understand what feedback is, act on it, and improve the quality of feedback and their learning plans [ 68 ].

Table 5 summarizes those feedback tasks, activities, and key features of organizational aspects that enable each phase of the feedback loop based on the literature review.

The present scoping review identified 61 papers that mapped the literature on feedback processes in the WBL environments of undergraduate health professions. This review explored how feedback processes are organized in these learning contexts using the feedback loop framework. Given the specific characteristics of feedback processes in undergraduate clinical learning, three main findings were identified on how feedback processes are being conducted in the clinical environment and how these processes could be organized to support feedback processes.

First, the literature lacks a balance between the three dimensions of the feedback loop. In this regard, most of the articles in this review focused on reporting experiences or strategies for delivering feedback information (i.e., feedback dimension). Credible and objective feedback information is based on direct observation [ 46 ] and occurs within an interaction or a dialogue [ 62 , 88 ]. However, only having credible and objective information does not ensure that it will be considered, understood, used, and put into practice by the student [ 89 ].

Feedback-supporting actions aligned with goals and priorities facilitate effective feedback processes [ 89 ] because goal-oriented feedback focuses on students' learning needs [ 7 ]. In contrast, this review showed that only a minority of the studies highlighted the importance of aligning learning objectives and feedback (i.e., the feed-up dimension). To overcome this, supervisors and students must establish goals and agreements before starting clinical practice, as it allows students to measure themselves on a defined basis [ 90 , 91 ] and enhances students' feedback-seeking behavior [ 39 , 92 ] and responsiveness to feedback [ 83 ]. In addition, learning goals should be shared, and co-constructed, through a dialogue [ 50 , 88 , 90 , 92 ]. In fact, relationship-based feedback models emphasize setting shared goals and plans as part of the feedback process [ 68 ].

Many of the studies acknowledge the importance of establishing an action plan and promoting the use of feedback (i.e., feedforward). However, there is yet limited insight on how to best implement strategies that support the use of action plans, improve performance and close learning gaps. In this regard, it is described that delivering feedback without perceiving changes, results in no effect or impact on learning [ 88 ]. To determine if a feedback loop is closed, observing a change in the student's response is necessary. In other words, feedback does not work without repeating the same task [ 68 ], so teachers need to observe subsequent tasks to notice changes [ 88 ]. While feedforward is fundamental to long-term performance, it is shown that more research is needed to determine effective actions to be implemented in the WBL environment to close feedback loops.

Second, there is a need for more knowledge about designing feedback activities in the WBL environment that will generate constructive feedback for learning. WBA is the most frequently reported feedback activity in clinical workplace contexts [ 39 , 46 , 56 , 87 ]. Despite the efforts of some authors to use WBAs as a formative assessment and feedback opportunity, in several studies, a summative component of the WBA was presented as a barrier to actionable feedback [ 33 , 56 ]. Students suggest separating grading from observation and using, for example, the mini-CEX in informal situations [ 33 ]. Several authors also recommend disconnecting the summative components of WBAs to avoid generating emotions that can limit the uptake and use of feedback [ 28 , 93 ]. Other literature recommends purposefully designing a system of assessment using low-stakes data points for feedback and learning. Accordingly, programmatic assessment is a framework that combines both the learning and the decision-making function of assessment [ 94 , 95 ]. Programmatic assessment is a practical approach for implementing low-stakes as a continuum, giving opportunities to close the gap between current and desired performance and having the student as an active agent [ 96 ]. This approach enables the incorporation of low-stakes data points that target student learning [ 93 ] and provide performance-relevant information (i.e., meaningful feedback) based on direct observations during authentic professional activities [ 46 ]. Using low-stakes data points, learners make sense of information about their performance and use it to enhance the quality of their work or performance [ 96 , 97 , 98 ]. Implementing multiple instances of feedback is more effective than providing it once because it promotes closing feedback loops by giving the student opportunities to understand the feedback, make changes, and see if those changes were effective [ 89 ].

Third, the support provided by the teacher is fundamental and should be built into a reliable and long-term relationship, where the teacher must take the role of coach rather than assessor, and students should develop feedback agency and be active in seeking and using feedback to improve performance. Although it is recognized that institutional efforts over the past decades have focused on training teachers to deliver feedback, clinical supervisors' lack of teaching skills is still identified as a barrier to workplace feedback [ 99 ]. In particular, research indicates that clinical teachers lack the skills to transform the information obtained from an observation into constructive feedback [ 100 ]. Students are more likely to use feedback if they consider it credible and constructive [ 93 ] and based on stable relationships [ 93 , 99 , 101 ]. In trusting relationships, feedback can be straightforward and credible, and the likelihood of follow-up and actionable feedback improves [ 83 , 88 ]. Coaching strategies can be enhanced by teachers building an educational alliance that allows for trustworthy relationships or having supervisors with an exclusive coaching role [ 14 , 93 , 102 ].

Last, from a sociocultural perspective, individuals are the main actors in the learning process. Therefore, feedback impacts learning only if students engage and interact with it [ 11 ]. Thus, feedback design and student agency appear to be the main features of effective feedback processes. Accordingly, the present review identified that feedback design is a key feature for effective learning in complex environments such as WBL. Feedback in the workplace must ideally be organized and implemented to align learning outcomes, learning activities, and assessments, allowing learners to learn, practice, and close feedback loops [ 88 ]. To guide students toward performances that reflect long-term learning, an intensive formative learning phase is needed, in which multiple feedback processes are included that shape students´ further learning [ 103 ]. This design would promote student uptake of feedback for subsequent performance [ 1 ].

Strengths and limitations

The strengths of this study are (1) the use of an established framework, the Arksey and O'Malley's framework [ 22 ]. We included the step of socializing the results with stakeholders, which allowed the team to better understand the results from another perspective and offer a realistic look. (2) Using the feedback loop as a theoretical framework strengthened the results and gave a more thorough explanation of the literature regarding feedback processes in the WBL context. (3) our team was diverse and included researchers from different disciplines as well as a librarian.

The present scoping review has several limitations. Although we adhered to the recommended protocols and methodologies, some relevant papers may have been omitted. The research team decided to select original studies and reviews of the literature for the present scoping review. This caused some articles, such as guidelines, perspectives, and narrative papers, to be excluded from the current study.

One of the inclusion criteria was a focus on undergraduate students. However, some papers that incorporated undergraduate and postgraduate participants were included, as these supported the results of this review. Most articles involved medical students. Although the authors did not limit the search to medicine, maybe some articles involving students from other health disciplines needed to be included, considering the search in other databases or journals.

The results give insight in how feedback could be organized within the clinical workplace to promote feedback processes. On a small scale, i.e., in the feedback encounter between a supervisor and a learner, feedback should be organized to allow for follow-up feedback, thus working on required learning and performance goals. On a larger level, i.e., in the clerkship programme or a placement rotation, feedback should be organized through appropriate planning of subsequent tasks and activities.

More insight is needed in designing a closed loop feedback process, in which specific attention is needed in effective feedforward practices. The feedback that stimulates further action and learning requires a safe and trustful work and learning environment. Understanding the relationship between an individual and his or her environment is a challenge for determining the impact of feedback and must be further investigated within clinical WBL environments. Aligning the dimensions of feed-up, feedback and feedforward includes careful attention to teachers’ and students’ feedback literacy to assure that students can act on feedback in a constructive way. In this line, how to develop students' feedback agency within these learning environments needs further research.

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J.F-C, D.S, and S.H. made substantial contributions to the conception and design of the work. M.O-L contributed to the identification of studies. J.F-C, I.V, A.R, and L.I. made substantial contributions to the screening, reliability, and data analysis. J.F-C. wrote th e main manuscript text. All authors reviewed the manuscript.

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Fuentes-Cimma, J., Sluijsmans, D., Riquelme, A. et al. Designing feedback processes in the workplace-based learning of undergraduate health professions education: a scoping review. BMC Med Educ 24 , 440 (2024). https://doi.org/10.1186/s12909-024-05439-6

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Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review

• Virginia Dickson-Swift 1 ,
• Joanne Adams 1 ,
• Evelien Spelten 1 ,
• Irene Blackberry 2 ,
• Carlene Wilson 3 , 4 , 5 &
• Eva Yuen 3 , 6 , 7 , 8  

BMC Women's Health volume  24 , Article number:  256 ( 2024 ) Cite this article

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This scoping review aimed to identify and present the evidence describing key motivations for breast cancer screening among women aged ≥ 75 years. Few of the internationally available guidelines recommend continued biennial screening for this age group. Some suggest ongoing screening is unnecessary or should be determined on individual health status and life expectancy. Recent research has shown that despite recommendations regarding screening, older women continue to hold positive attitudes to breast screening and participate when the opportunity is available.

All original research articles that address motivation, intention and/or participation in screening for breast cancer among women aged ≥ 75 years were considered for inclusion. These included articles reporting on women who use public and private breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The Joanna Briggs Institute (JBI) methodology for scoping reviews was used to guide this review. A comprehensive search strategy was developed with the assistance of a specialist librarian to access selected databases including: the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, Web of Science and PsychInfo. The review was restricted to original research studies published since 2009, available in English and focusing on high-income countries (as defined by the World Bank). Title and abstract screening, followed by an assessment of full-text studies against the inclusion criteria was completed by at least two reviewers. Data relating to key motivations, screening intention and behaviour were extracted, and a thematic analysis of study findings undertaken.

A total of fourteen (14) studies were included in the review. Thematic analysis resulted in identification of three themes from included studies highlighting that decisions about screening were influenced by: knowledge of the benefits and harms of screening and their relationship to age; underlying attitudes to the importance of cancer screening in women's lives; and use of decision aids to improve knowledge and guide decision-making.

The results of this review provide a comprehensive overview of current knowledge regarding the motivations and screening behaviour of older women about breast cancer screening which may inform policy development.

Peer Review reports

Introduction

Breast cancer is now the most commonly diagnosed cancer in the world overtaking lung cancer in 2021 [ 1 ]. Across the globe, breast cancer contributed to 25.8% of the total number of new cases of cancer diagnosed in 2020 [ 2 ] and accounts for a high disease burden for women [ 3 ]. Screening for breast cancer is an effective means of detecting early-stage cancer and has been shown to significantly improve survival rates [ 4 ]. A recent systematic review of international screening guidelines found that most countries recommend that women have biennial mammograms between the ages of 40–70 years [ 5 ] with some recommending that there should be no upper age limit [ 6 , 7 , 8 , 9 , 10 , 11 , 12 ] and others suggesting that benefits of continued screening for women over 75 are not clear [ 13 , 14 , 15 ].

Some guidelines suggest that the decision to end screening should be determined based on the individual health status of the woman, their life expectancy and current health issues [ 5 , 16 , 17 ]. This is because the benefits of mammography screening may be limited after 7 years due to existing comorbidities and limited life expectancy [ 18 , 19 , 20 , 21 ], with some jurisdictions recommending breast cancer screening for women ≥ 75 years only when life expectancy is estimated as at least 7–10 years [ 22 ]. Others have argued that decisions about continuing with screening mammography should depend on individual patient risk and health management preferences [ 23 ]. This decision is likely facilitated by a discussion between a health care provider and patient about the harms and benefits of screening outside the recommended ages [ 24 , 25 ]. While mammography may enable early detection of breast cancer, it is clear that false-positive results and overdiagnosis Footnote 1 may occur. Studies have estimated that up to 25% of breast cancer cases in the general population may be over diagnosed [ 26 , 27 , 28 ].

The risk of being diagnosed with breast cancer increases with age and approximately 80% of new cases of breast cancer in high-income countries are in women over the age of 50 [ 29 ]. The average age of first diagnosis of breast cancer in high income countries is comparable to that of Australian women which is now 61 years [ 2 , 4 , 29 ]. Studies show that women aged ≥ 75 years generally have positive attitudes to mammography screening and report high levels of perceived benefits including early detection of breast cancer and a desire to stay healthy as they age [ 21 , 30 , 31 , 32 ]. Some women aged over 74 participate, or plan to participate, in screening despite recommendations from health professionals and government guidelines advising against it [ 33 ]. Results of a recent review found that knowledge of the recommended guidelines and the potential harms of screening are limited and many older women believed that the benefits of continued screening outweighed the risks [ 30 ].

Very few studies have been undertaken to understand the motivations of women to screen or to establish screening participation rates among women aged ≥ 75 and older. This is surprising given that increasing age is recognised as a key risk factor for the development of breast cancer, and that screening is offered in many locations around the world every two years up until 74 years. The importance of this topic is high given the ambiguity around best practice for participation beyond 74 years. A preliminary search of Open Science Framework, PROSPERO, Cochrane Database of Systematic Reviews and JBI Evidence Synthesis in May 2022 did not locate any reviews on this topic.

This scoping review has allowed for the mapping of a broad range of research to explore the breadth and depth of the literature, summarize the evidence and identify knowledge gaps [ 34 , 35 ]. This information has supported the development of a comprehensive overview of current knowledge of motivations of women to screen and screening participation rates among women outside the targeted age of many international screening programs.

Materials and methods

Research question.

The research question for this scoping review was developed by applying the Population—Concept—Context (PCC) framework [ 36 ]. The current review addresses the research question “What research has been undertaken in high-income countries (context) exploring the key motivations to screen for breast cancer and screening participation (concepts) among women ≥ 75 years of age (population)?

Eligibility criteria

Participants.

Women aged ≥ 75 years were the key population. Specifically, motivations to screen and screening intention and behaviour and the variables that discriminate those who screen from those who do not (non-screeners) were utilised as the key predictors and outcomes respectively.

From a conceptual perspective it was considered that motivation led to behaviour, therefore articles that described motivation and corresponding behaviour were considered. These included articles reporting on women who use public (government funded) and private (fee for service) breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The scope included high-income countries using the World Bank definition [ 37 ]. These countries have broadly similar health systems and opportunities for breast cancer screening in both public and private settings.

Types of sources

All studies reporting original research in peer-reviewed journals from January 2009 were eligible for inclusion, regardless of design. This date was selected due to an evaluation undertaken for BreastScreen Australia recommending expansion of the age group to include 70–74-year-old women [ 38 ]. This date was also indicative of international debate regarding breast cancer screening effectiveness at this time [ 39 , 40 ]. Reviews were also included, regardless of type—scoping, systematic, or narrative. Only sources published in English and available through the University’s extensive research holdings were eligible for inclusion. Ineligible materials were conference abstracts, letters to the editor, editorials, opinion pieces, commentaries, newspaper articles, dissertations and theses.

This scoping review was registered with the Open Science Framework database ( https://osf.io/fd3eh ) and followed Joanna Briggs Institute (JBI) methodology for scoping reviews [ 35 , 36 ]. Although ethics approval is not required for scoping reviews the broader study was approved by the University Ethics Committee (approval number HEC 21249).

Search strategy

A pilot search strategy was developed in consultation with an expert health librarian and tested in MEDLINE (OVID) and conducted on 3 June 2022. Articles from this pilot search were compared with seminal articles previously identified by the members of the team and used to refine the search terms. The search terms were then searched as both keywords and subject headings (e.g., MeSH) in the titles and abstracts and Boolean operators employed. A full MEDLINE search was then carried out by the librarian (see Table  1 ). This search strategy was adapted for use in each of the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Web of Science and PsychInfo databases. The references of included studies have been hand-searched to identify any additional evidence sources.

Study/source of evidence selection

Following the search, all identified citations were collated and uploaded into EndNote v.X20 (Clarivate Analytics, PA, USA) and duplicates removed. The resulting articles were then imported into Covidence – Cochrane’s systematic review management software [ 41 ]. Duplicates were removed once importation was complete, and title and abstract screening was undertaken against the eligibility criteria. A sample of 25 articles were assessed by all reviewers to ensure reliability in the application of the inclusion and exclusion criteria. Team discussion was used to ensure consistent application. The Covidence software supports blind reviewing with two reviewers required at each screening phase. Potentially relevant sources were retrieved in full text and were assessed against the inclusion criteria by two independent reviewers. Conflicts were flagged within the software which allows the team to discuss those that have disagreements until a consensus was reached. Reasons for exclusion of studies at full text were recorded and reported in the scoping review. The Preferred Reporting Items of Systematic Reviews extension for scoping reviews (PRISMA-ScR) checklist was used to guide the reporting of the review [ 42 ] and all stages were documented using the PRISMA-ScR flow chart [ 42 ].

Data extraction

A data extraction form was created in Covidence and used to extract study characteristics and to confirm the study’s relevance. This included specific details such as article author/s, title, year of publication, country, aim, population, setting, data collection methods and key findings relevant to the review question. The draft extraction form was modified as needed during the data extraction process.

Data analysis and presentation

Extracted data were summarised in tabular format (see Table  2 ). Consistent with the guidelines for the effective reporting of scoping reviews [ 43 ] and the JBI framework [ 35 ] the final stage of the review included thematic analysis of the key findings of the included studies. Study findings were imported into QSR NVivo with coding of each line of text. Descriptive codes reflected key aspects of the included studies related to the motivations and behaviours of women > 75 years about breast cancer screening.

In line with the reporting requirements for scoping reviews the search results for this review are presented in Fig.  1 [ 44 ].

PRISMA Flowchart. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71

A total of fourteen [ 14 ] studies were included in the review with studies from the following countries, US n  = 12 [ 33 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 ], UK n  = 1 [ 23 ] and France n  = 1 [ 56 ]. Sample sizes varied, with most containing fewer than 50 women ( n  = 8) [ 33 , 45 , 46 , 48 , 51 , 52 , 55 ]. Two had larger samples including a French study with 136 women (a sub-set of a larger sample) [ 56 ], and one mixed method study in the UK with a sample of 26 women undertaking interviews and 479 women completing surveys [ 23 ]. One study did not report exact numbers [ 50 ]. Three studies [ 47 , 53 , 54 ] were undertaken by a group of researchers based in the US utilising the same sample of women, however each of the papers focused on different primary outcomes. The samples in the included studies were recruited from a range of locations including primary medical care clinics, specialist medical clinics, University affiliated medical clinics, community-based health centres and community outreach clinics [ 47 , 53 , 54 ].

Data collection methods varied and included: quantitative ( n  = 8), qualitative ( n  = 5) and mixed methods ( n  = 1). A range of data collection tools and research designs were utilised; pre/post, pilot and cross-sectional surveys, interviews, and secondary analysis of existing data sets. Seven studies focused on the use of a Decision Aids (DAs), either in original or modified form, developed by Schonberg et al. [ 55 ] as a tool to increase knowledge about the harms and benefits of screening for older women [ 45 , 47 , 48 , 49 , 52 , 54 , 55 ]. Three studies focused on intention to screen [ 33 , 53 , 56 ], two on knowledge of, and attitudes to, screening [ 23 , 46 ], one on information needs relating to risks and benefits of screening discontinuation [ 51 ], and one on perceptions about discontinuation of screening and impact of social interactions on screening [ 50 ].

The three themes developed from the analysis of the included studies highlighted that decisions about screening were primarily influenced by: (1) knowledge of the benefits and harms of screening and their relationship to age; (2) underlying attitudes to the importance of cancer screening in women's lives; and (3) exposure to decision aids designed to facilitate informed decision-making. Each of these themes will be presented below drawing on the key findings of the appropriate studies. The full dataset of extracted data can be found in Table  2 .

Knowledge of the benefits and harms of screening ≥ 75 years

The decision to participate in routine mammography is influenced by individual differences in cognition and affect, interpersonal relationships, provider characteristics, and healthcare system variables. Women typically perceive mammograms as a positive, beneficial and routine component of care [ 46 ] and an important aspect of taking care of themselves [ 23 , 46 , 49 ]. One qualitative study undertaken in the US showed that few women had discussed mammography cessation or the potential harms of screening with their health care providers and some women reported they would insist on receiving mammography even without a provider recommendation to continue screening [ 46 ].

Studies suggested that ageing itself, and even poor health, were not seen as reasonable reasons for screening cessation. For many women, guidance from a health care provider was deemed the most important influence on decision-making [ 46 ]. Preferences for communication about risk and benefits were varied with one study reporting women would like to learn more about harms and risks and recommended that this information be communicated via physicians or other healthcare providers, included in brochures/pamphlets, and presented outside of clinical settings (e.g., in community-based seniors groups) [ 51 ]. Others reported that women were sometimes sceptical of expert and government recommendations [ 33 ] although some were happy to participate in discussions with health educators or care providers about breast cancer screening harms and benefits and potential cessation [ 52 ].

Underlying attitudes to the importance of cancer screening at and beyond 75 years

Included studies varied in describing the importance of screening, with some attitudes based on past attendance and some based on future intentions to screen. Three studies reported findings indicating that some women intended to continue screening after 75 years of age [ 23 , 45 , 46 ], with one study in the UK reporting that women supported an extension of the automatic recall indefinitely, regardless of age or health status. In this study, failure to invite older women to screen was interpreted as age discrimination [ 23 ]. The desire to continue screening beyond 75 was also highlighted in a study from France that found that 60% of the women ( n  = 136 aged ≥ 75) intended to pursue screening in the future, and 27 women aged ≥ 75, who had never undergone mammography previously (36%), intended to do so in the future [ 56 ]. In this same study, intentions to screen varied significantly [ 56 ]. There were no sociodemographic differences observed between screened and unscreened women with regard to level of education, income, health risk behaviour (smoking, alcohol consumption), knowledge about the importance and the process of screening, or psychological features (fear of the test, fear of the results, fear of the disease, trust in screening impact) [ 56 ]. Further analysis showed that three items were statistically correlated with a higher rate of attendance at screening: (1) screening was initiated by a physician; (2) the women had a consultation with a gynaecologist during the past 12 months; and (3) the women had already undergone at least five screening mammograms. Analysis highlighted that although average income, level of education, psychological features or other types of health risk behaviours did not impact screening intention, having a mammogram previously impacted likelihood of ongoing screening. There was no information provided that explained why women who had not previously undergone screening might do so in the future.

A mixed methods study in the UK reported similar findings [ 23 ]. Utilising interviews ( n  = 26) and questionnaires ( n  = 479) with women ≥ 70 years (median age 75 years) the overwhelming result (90.1%) was that breast screening should be offered to all women indefinitely regardless of age, health status or fitness [ 23 ], and that many older women were keen to continue screening. Both the interview and survey data confirmed women were uncertain about eligibility for breast screening. The survey data showed that just over half the women (52.9%) were unaware that they could request mammography or knew how to access it. Key reasons for screening discontinuation were not being invited for screening (52.1%) and not knowing about self-referral (35.1%).

Women reported that not being invited to continue screening sent messages that screening was no longer important or required for this age group [ 23 ]. Almost two thirds of the women completing the survey (61.6%) said they would forget to attend screening without an invitation. Other reasons for screening discontinuation included transport difficulties (25%) and not wishing to burden family members (24.7%). By contrast, other studies have reported that women do not endorse discontinuation of screening mammography due to advancing age or poor health, but some may be receptive to reducing screening frequency on recommendation from their health care provider [ 46 , 51 ].

Use of Decision Aids (DAs) to improve knowledge and guide screening decision-making

Many women reported poor knowledge about the harms and benefits of screening with studies identifying an important role for DAs. These aids have been shown to be effective in improving knowledge of the harms and benefits of screening [ 45 , 54 , 55 ] including for women with low educational attainment; as compared to women with high educational attainment [ 47 ]. DAs can increase knowledge about screening [ 47 , 49 ] and may decrease the intention to continue screening after the recommended age [ 45 , 52 , 54 ]. They can be used by primary care providers to support a conversation about breast screening intention and reasons for discontinuing screening. In one pilot study undertaken in the US using a DA, 5 of the 8 women (62.5%) indicated they intended to continue to receive mammography; however, 3 participants planned to get them less often [ 45 ]. When asked whether they thought their physician would want them to get a mammogram, 80% said “yes” on pre-test; this figure decreased to 62.5% after exposure to the DA. This pilot study suggests that the use of a decision-aid may result in fewer women ≥ 75 years old continuing to screen for breast cancer [ 45 ].

Similar findings were evident in two studies drawing on the same data undertaken in the US [ 48 , 53 ]. Using a larger sample ( n  = 283), women’s intentions to screen prior to a visit with their primary care provider and then again after exposure to the DA were compared. Results showed that 21.7% of women reduced their intention to be screened, 7.9% increased their intentions to be screened, and 70.4% did not change. Compared to those who had no change or increased their screening intentions, women who had a decrease in screening intention were significantly less likely to receive screening after 18 months. Generally, studies have shown that women aged 75 and older find DAs acceptable and helpful [ 47 , 48 , 49 , 55 ] and using them had the potential to impact on a women’s intention to screen [ 55 ].

Cadet and colleagues [ 49 ] explored the impact of educational attainment on the use of DAs. Results highlight that education moderates the utility of these aids; women with lower educational attainment were less likely to understand all the DA’s content (46.3% vs 67.5%; P < 0.001); had less knowledge of the benefits and harms of mammography (adjusted mean ± standard error knowledge score, 7.1 ± 0.3 vs 8.1 ± 0.3; p < 0.001); and were less likely to have their screening intentions impacted (adjusted percentage, 11.4% vs 19.4%; p  = 0.01).

This scoping review summarises current knowledge regarding motivations and screening behaviours of women over 75 years. The findings suggest that awareness of the importance of breast cancer screening among women aged ≥ 75 years is high [ 23 , 46 , 49 ] and that many women wish to continue screening regardless of perceived health status or age. This highlights the importance of focusing on motivation and screening behaviours and the multiple factors that influence ongoing participation in breast screening programs.

The generally high regard attributed to screening among women aged ≥ 75 years presents a complex challenge for health professionals who are focused on potential harm (from available national and international guidelines) in ongoing screening for women beyond age 75 [ 18 , 20 , 57 ]. Included studies highlight that many women relied on the advice of health care providers regarding the benefits and harms when making the decision to continue breast screening [ 46 , 51 , 52 ], however there were some that did not [ 33 ]. Having a previous pattern of screening was noted as being more significant to ongoing intention than any other identified socio-demographic feature [ 56 ]. This is perhaps because women will not readily forgo health care practices that they have always considered important and that retain ongoing importance for the broader population.

For those women who had discontinued screening after the age of 74 it was apparent that the rationale for doing so was not often based on choice or receipt of information, but rather on factors that impact decision-making in relation to screening. These included no longer receiving an invitation to attend, transport difficulties and not wanting to be a burden on relatives or friends [ 23 , 46 , 51 ]. Ongoing receipt of invitations to screen was an important aspect of maintaining a capacity to choose [ 23 ]. This was particularly important for those women who had been regular screeners.

Women over 75 require more information to make decisions regarding screening [ 23 , 52 , 54 , 55 ], however health care providers must also be aware that the element of choice is important for older women. Having a capacity to choose avoids any notion of discrimination based on age, health status, gender or sociodemographic difference and acknowledges the importance of women retaining control over their health [ 23 ]. It was apparent that some women would choose to continue screening at a reduced frequency if this option was available and that women should have access to information facilitating self-referral [ 23 , 45 , 46 , 51 , 56 ].

Decision-making regarding ongoing breast cancer screening has been facilitated via the use of Decision Aids (DAs) within clinical settings [ 54 , 55 ]. While some studies suggest that women will make a decision regardless of health status, the use of DAs has impacted women’s decision to screen. While this may have limited benefit for those of lower educational attainment [ 48 ] they have been effective in improving knowledge relating to harms and benefits of screening particularly where they have been used to support a conversation with women about the value of screening [ 54 , 55 , 56 ].

Women have identified challenges in engaging in conversations with health care providers regarding ongoing screening, because providers frequently draw on projections of life expectancy and over-diagnosis [ 17 , 51 ]. As a result, these conversations about screening after age 75 years often do not occur [ 46 ]. It is likely that health providers may need more support and guidance in leading these conversations. This may be through the use of DAs or standardised checklists. It may be possible to incorporate these within existing health preventive measures for this age group. The potential for advice regarding ongoing breast cancer screening to be available outside of clinical settings may provide important pathways for conversations with women regarding health choices. Provision of information and advice in settings such as community based seniors groups [ 51 ] offers a potential platform to broaden conversations and align sources of information, not only with health professionals but amongst women themselves. This may help to address any misconception regarding eligibility and access to services [ 23 ]. It may also be aligned with other health promotion and lifestyle messages provided to this age group.

Limitations of the review

The searches that formed the basis of this review were carried in June 2022. Although the search was comprehensive, we have only captured those studies that were published in the included databases from 2009. There may have been other studies published outside of these periods. We also limited the search to studies published in English with full-text availability.

The emphasis of a scoping review is on comprehensive coverage and synthesis of the key findings, rather than on a particular standard of evidence and, consequently a quality assessment of the included studies was not undertaken. This has resulted in the inclusion of a wide range of study designs and data collection methods. It is important to note that three studies included in the review drew on the same sample of women (283 over > 75)[ 49 , 53 , 54 ]. The results of this review provide valuable insights into motivations and behaviours for breast cancer screening for older women, however they should be interpreted with caution given the specific methodological and geographical limitations.

Conclusion and recommendations

This scoping review highlighted a range of key motivations and behaviours in relation to breast cancer screening for women ≥ 75 years of age. The results provide some insight into how decisions about screening continuation after 74 are made and how informed decision-making can be supported. Specifically, this review supports the following suggestions for further research and policy direction:

Further research regarding breast cancer screening motivations and behaviours for women over 75 would provide valuable insight for health providers delivering services to women in this age group.

Health providers may benefit from the broader use of decision aids or structured checklists to guide conversations with women over 75 regarding ongoing health promotion/preventive measures.

Providing health-based information in non-clinical settings frequented by women in this age group may provide a broader reach of information and facilitate choices. This may help to reduce any perception of discrimination based on age, health status or socio-demographic factors.

Availability of data and materials

All data generated or analysed during this study is included in this published article (see Table  2 above).

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Acknowledgements

We would like to acknowledge Ange Hayden-Johns (expert librarian) who assisted with the development of the search criteria and undertook the relevant searches and Tejashree Kangutkar who assisted with some of the Covidence work.

This work was supported by funding from the Australian Government Department of Health and Aged Care (ID: Health/20–21/E21-10463).

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VDS conceived and designed the scoping review. VDS & JA developed the search strategy with librarian support, and all authors (VDS, JA, ES, IB, CW, EY) participated in the screening and data extraction stages and assisted with writing the review. All authors provided editorial support and read and approved the final manuscript prior to submission.

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Dickson-Swift, V., Adams, J., Spelten, E. et al. Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review. BMC Women's Health 24 , 256 (2024). https://doi.org/10.1186/s12905-024-03094-z

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In the past several months, Taylor Swift has become culturally ubiquitous in a way that feels nearly terrifying. Superstardom tends to turn normal people into cartoons, projections, gods, monsters. Swift has been inching toward some sort of tipping point for a while. The most recent catalyst was, in part, love: in the midst of her record-breaking Eras Tour , Swift, who is thirty-four, began dating Travis Kelce , a tight end for the Kansas City Chiefs. Whenever Swift appeared at one of Kelce’s games, the broadcasters whipped their extra-high-definition cameras toward her, sending legions of amateur lip-readers scrambling for their phones. I’m paid to give legibility to such things, and even I couldn’t help but think that we were crossing some sort of Rubicon with regard to our collective sanity. Swift was everywhere, beheld by everyone. She is one of the most streamed artists of all time on Spotify; Billboard reported that, at one point, she accounted for seven per cent of all vinyl sales in the U.S. Swift is a capable and hugely savvy businesswoman (a billionaire, in fact), yet I began to worry about her in a nearly maternal way: How could anyone survive that sort of scrutiny and retain her humanity? Detaching from reality can be lethal for a pop star, particularly one known for her Everygirl candor. I thought of the oft-memed bit from “Arrested Development,” in which Lucille Bluth, the oblivious matriarch, asks, “I mean, it’s one banana, Michael—what could it cost? Ten dollars?”

This month, Swift released “The Tortured Poets Department,” her eleventh studio album. She has now reached a level of virtuosity within her genre that feels nearly immutable—she’s too practiced, too masterly, to swing and really miss. But “The Tortured Poets Department” suffers from being too long (two hours after it was released, Swift announced a second disk, bringing the total number of tracks to thirty-one) and too familiar. Swift co-wrote most of the record with Jack Antonoff and with Aaron Dessner. (The two producers have oppositional melodic sensibilities: Antonoff sharpens Swift; Dessner softens her.) The new songs suggest that, after a decade, her partnership with Antonoff has perhaps run its course. The tracks written with Dessner are gentler, more tender, and more surprising. The raw and stirring “Robin” seems to address a child—either a very young Swift (the album contains several references to her hijacked youth, including “The Manuscript,” a sombre song about a relationship with an older man), or maybe a future son or daughter.

“The Tortured Poets Department” was released following the end of Swift’s six-year relationship with the actor Joe Alwyn, and the album is mostly about the utter unreliability of love—how bonkers it is that we build our entire lives around a feeling that can simply dissipate. “You said I’m the love of your life / About a million times,” Swift sings on “Loml,” a wrenching piano ballad. “You shit-talked me under the table, talking rings and talking cradles.” Shortly after Swift and Alwyn split, she reportedly had a fling with Matty Healy , the front man for the British rock band the 1975. (“I took the miracle move-on drug / The effects were temporary,” she sings on “Fortnight.”) Healy is a provocateur, prone to making loutish jokes; onstage, he smokes, eats raw steak, and makes out with strangers. The rumored relationship sent Swifties into spasms of outrage, and revealed the unusual extent to which Swift is beholden to her fans. She has encouraged and nurtured a parasocial affection (at times she nearly demanded it: inviting fans to her home, baking them cookies), and she now has to contend with their sense of ownership over her life. On “But Daddy I Love Him,” she scornfully chastises the “judgmental creeps” who relentlessly hounded her about her love life: “I’d rather burn my whole life down / Than listen to one more second of all this bitching and moaning.” (She saves the nastiest barb for the final verse: “All the wine moms are still holding out.”) Regardless, things with Healy ended fast, and, a few months later, she did the most wholesome thing possible: she started dating a football player whose team would go on to win the Super Bowl.

Quite a few of the album’s lyrics seem to evoke Healy: “You’re not Dylan Thomas / I’m not Patti Smith / This ain’t the Chelsea Hotel / We’re modern idiots,” Swift sings on the title track, a shimmering song about broken people clinging to each other. I like that line—it suggests self-awareness—but it’s followed by one of the weirdest verses of Swift’s career: “You smoked then ate seven bars of chocolate / We declared Charlie Puth should be a bigger artist / I scratch your head, you fall asleep / Like a tattooed golden retriever.” Other lyrics lack Swift’s signature precision: “At dinner you take my ring off my middle finger and put it on the one people put wedding rings on,” she sings. Even the greatest poets whiff a phrase now and then, but a lot of the language on the record is either incoherent (“I was a functioning alcoholic till nobody noticed my new aesthetic”) or just generally bewildering (“Florida is one hell of a drug”). My favorite lyrics are the simplest, and are delivered with a kind of exhausted calm. On “Down Bad,” a woozy song about feeling like shit, Swift admits defeat: “Now I’m down bad, crying at the gym / Everything comes out teen-age petulance / Fuck it if I can’t have him.” Feel you, dude.

Each of Swift’s records has a distinct visual component—this is more or less the premise of the Eras Tour . “The Tortured Poets Department” is preoccupied with writerly accoutrements, but the vibe is ultimately more high-end stationery store than musty rare-books room. Initially, the title seemed as if it might be a smirking reference to Joe Alwyn (he once joked about being part of a WhatsApp group called the Tortured Man Club). But I find that the phrase works well as a summation of Swift’s entire self-conception. She has always made a big deal about her pain being generative. “This writer is of the firm belief that our tears become holy in the form of ink on the page,” she wrote on Instagram. She has talked about this album as if the songs were mere monuments to her suffering: “Once we have spoken our saddest story, we can be free of it.”

An unusual number of Swift’s songs portray love as combative, perhaps because she is so prone to working from a place of wounded longing. On “Better Than Revenge,” a song she wrote at eighteen, Swift sings about art as a useful weapon, a way to punish anyone who does her dirty: “She thinks I’m psycho / ’Cause I like to rhyme her name with things.” It’s a funny lyric, but, by Swift’s current age, most people understand that love isn’t about winning. (Art isn’t, either.) Yet, in Swift’s universe, love is often a battlefield. On “Who’s Afraid of Little Old Me?,” she catalogues the ways in which fame can pervert and destroy a person: “I was tame, I was gentle, till the circus life made me mean,” she sings. She is paranoid, wild-eyed: “Tell me everything is not about me / But what if it is ?” (After the year Swift has had, she’s not wrong to ask.) The song itself is so tightly produced that it doesn’t sound dangerous. But, midway through, her voice briefly goes feral. I found the moment thrilling, which is maybe part of the problem.

In the weeks before “The Tortured Poets Department” was released, it seemed as though a backlash was inevitable. Swift’s lyrics are often focussed on her perseverance against all odds, but, these days, she is too omnipresent and powerful to make a very convincing underdog. Still, interest in Swift has yet to diminish or fully sour. She announced the album at the Grammys, in February, as she was accepting the award for Best Pop Vocal Album, for her previous record, “Midnights.” I found her speech so profoundly mercenary it was sort of funny. “I want to say thank you to the fans by telling you a secret that I’ve been keeping from you for the last two years, which is that my brand-new album comes out April 19th,” Swift said. “I’m gonna go and post the cover.”

As I’ve grown older, I’ve mostly stopped thinking about art and commerce as being fundamentally at odds. But there are times when the rapaciousness of our current pop stars seems grasping and ugly. I’m not saying that pop music needs to be ideologically pure—it wouldn’t be much fun if it were—but maybe it’s time to cool it a little with the commercials? A couple of days before the album’s release, Swift unveiled a library-esque display at the Grove, a shopping mall in Los Angeles. It included several pages of typewritten lyrics on faux aged paper, arranged as though they had recently been tugged from the platen of a Smith Corona. (The word “talisman” was misspelled on one, to the delight of the haters.) The Spotify logo was featured prominently at the bottom of each page. Once again, I laughed. What is the point of all that money if it doesn’t buy you freedom from corporate branding? For a million reasons—her adoption of the “poet” persona; her already unprecedented streaming numbers—such an egregious display of sponsorship was worse than just incongruous. It was, as they say, cringe.

Among the other clues Swift doled out were five exclusive playlists for Apple Music (sorry, Spotify!), comprising her own songs and organized according to the five stages of grief: denial, anger, bargaining, depression, and acceptance. At first, I thought the playlists were just another bit of overwrought marketing, but the more I listened to “The Tortured Poets Department” the more germane the concept felt. Anyone who has grieved knows that these categories are not a ladder you climb toward peace: it is possible, instead, to feel all of them at once, briefly or forever. Each stage is evident on “The Tortured Poets Department.” Sometimes they oppose one another: Swift is cocky and self-loathing, tough and vulnerable, totally fine and completely destroyed. She is free, but trapped. Dominant, powerless. She wants this, but she doesn’t. Those sorts of contradictions can be dizzying, but, in the end, they’re also the last things keeping her human. ♦

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