how qualitative research may help the hospital

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• Published: 27 May 2020

How to use and assess qualitative research methods

• Loraine Busetto   ORCID: orcid.org/0000-0002-9228-7875 1 ,
• Wolfgang Wick 1 , 2 &
• Christoph Gumbinger 1  

Neurological Research and Practice volume  2 , Article number:  14 ( 2020 ) Cite this article

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This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 , 8 , 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 , 10 , 11 , 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

From data collection to data analysis

Attributions for icons: see Fig. 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 , 25 , 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 , 32 , 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 , 38 , 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

Availability of data and materials

Not applicable.

Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

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Busetto, L., Wick, W. & Gumbinger, C. How to use and assess qualitative research methods. Neurol. Res. Pract. 2 , 14 (2020). https://doi.org/10.1186/s42466-020-00059-z

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• P van Royen 2 ,
• 1 Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK
• 2 Professor of General Practice, Department of General Practice, University of Antwerp, Universiteitsplein 1, 2610 Antwerp, Belgium
• 3 Professor of Quality in Health Care, Clinical Governance Research & Development Unit, Department of General Practice & Primary Health Care, University of Leicester, Leicester LE5 4PW, UK
• Correspondence to:
 Dr C Pope, Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK;
 c.pope{at}bristol.ac.uk

There are no easy solutions to the problem of improving the quality of care. Research has shown how difficult it can be, but has failed to provide reliable and effective ways to change services and professional performance for the better. Much depends on the perspectives of users and the attitudes and behaviours of professionals in the context of their organisations and healthcare teams. Qualitative research offers a variety of methods for identifying what really matters to patients and carers, detecting obstacles to changing performance, and explaining why improvement does or does not occur. The use of such methods in future studies could lead to a better understanding of how to improve quality.

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“ I went to see Roy Griffiths (architect of the 1984 NHS reforms and supermarket chief executive) in his office at Sainsbury's and while I was talking to him his secretary handed him a piece of paper. He looked at it and said: `OK'. I asked him: `What do you mean OK?' and he said: `My organisation is OK today'. It turned out he had just six measures on that piece of paper and from those he could tell what the state of Sainsbury's health had been the day before; things like the amount of money taken yesterday, the freshness quotient—the amount of stuff on the shelves—the proportion of staff on duty and so on .” NHS regional manager quoted in Strong and Robinson. 1

The above quote illustrates a view of management in the retail sector that was seen in the UK in the 1980s as a role model for health services. The quality of health care could be assured if we could only develop good quantitative measures such as performance indicators, and thus identify problems, make changes, and improve health services. This vision has been tempered with the realisation that the issue of “quality” is more complicated and nebulous than this model of management implies, especially in the case of complex health systems and services. The assessment of quality of services can no longer be confined to simply monitoring such aspects as waiting time, but requires an understanding of the experience of waiting for care—for example, the nature of the clinical environment, the adequacy of communication by and with health professionals, the context and manner in which treatment is delivered, and whether services and care meet expectations. Moreover, it is increasingly recognised that views of quality depend on one's perspective: patients, providers, politicians, and the public may all have contested views of what constitutes high or poor quality care.

The concept of quality in health care is multidimensional and complex and some of the questions we want to ask about the quality of care or services may not be amenable to quantitative measurement. Qualitative research has come to the fore in health and social research by providing ways of answering these sorts of questions, 2, 3 both in the form of “stand alone” or independent research projects and as a complement to quantitative studies.

The use of qualitative methods in qualitative research involves the systematic collection, organisation, and analysis of textual material derived from talk or observation. It is rooted in the interpretive perspectives found in the humanities and social sciences that emphasise the importance of understanding, from the viewpoint of the people involved, how individuals and groups interpret, experience, and make sense of social phenomena. It is not possible here to elaborate on the origins and theoretical underpinnings of this distinctive approach to research, but it is important to be aware that qualitative research is informed by a quite different paradigm to that which governs quantitative clinical and biomedical research. The emphasis in qualitative research on understanding meanings and experiences makes it particularly useful for quality assessment and for unpacking some of the complex issues inherent to quality improvement. This paper explores some of the qualitative methods that can help to gather information about the delivery of good quality health care and explain variations in health care provision.

THE METHODS

Qualitative researchers study phenomena and events in their natural settings, often interpreting them in terms of the subjective meanings attached by the individual. Qualitative methods for collecting data include interviews, observation, and analysis of documents. Different methods may be appropriate to different situations and different research questions. In some cases a single method may be used while in others a combination of methods may be employed. In this paper we focus on interview based and observational methods as these are the most commonly used in quality assessment.

Interview based methods

Individual face to face interviews may be either semi-structured or in-depth. Semi-structured interviews are typically based on a flexible topic guide that provides a loose structure of open ended questions to explore experiences and attitudes. In-depth interviews provide an opportunity to obtain more detail about an issue or experience, and are especially useful for exploring experiences of care. Because this method elicits people's own views and accounts, it can have the additional benefit of uncovering issues or concerns that had not been anticipated or considered by the researchers. In order to ensure that really detailed information is gathered, interview methods require experienced researchers with the necessary sensitivity and ability to establish rapport with respondents, to use topic guides flexibly and follow up questions and responses.

Focus groups are similar in structure to face to face interviews but they use the interaction of a group of, typically, 6–8 people to generate data. This allows group members to talk to one another, argue and ask questions, and is especially useful for finding out about shared experiences. Focus groups have been successfully used with users and staff. One adaptation of this method is the “exploration group” in which different healthcare providers who have direct contact with a particular health problem review and discuss some material such as audio or video taped cases or interviews in order to develop an interpretative explanation. 4

Another variant is the “quality circle”. This convenes a small group of healthcare providers and patients who meet at regular times for a determined period to formulate hypotheses or action points to improve quality in health care. 5

Observation based methods

The systematic observation of organisational settings, team behaviour, and interactions is especially useful in studying quality issues as it allows researchers to uncover everyday behaviour rather than only relying on interview accounts. These methods are increasingly used in the study of organisation and delivery of care 6 and can be especially useful in uncovering what really happens in particular healthcare settings—for example, in the study of everyday work in labour wards 7 —and for formative evaluation of new services.

Narrative based medicine

Narrative based medicine is one of several patient centred approaches that can give the physician access to the lived experience of their patients. This is the context in which the physician interprets symptoms and signs and in which personal healthcare decisions are made. It can therefore be an approach to understanding how healthcare decisions are made.

Qualitative methods are designed to yield detailed and holistic views of the phenomena under study. The aim of qualitative research is not therefore to identify a statistically representative set of respondents or to produce numerical predictions. Qualitative research questions tend to be exploratory and not tied to formal hypothesis testing, so the sampling strategies used in qualitative research are purposive or theoretical rather than representative or probability based. 8 This means that respondents are sampled based on specific predetermined criteria in order to cover a range of constituencies—for example, different age, social class, and cultural backgrounds (see box 1). 9 To locate hard to reach individuals or groups, researchers can use “convenience” venues, informants, or social networks.

Box 1 Focus group study to obtain information directly from adolescent young women on their knowledge and expectations concerning contraceptive use and their attitude to healthcare

To obtain a range of views, a purposive direct sampling strategy was followed to organise the focus groups. Four secondary schools with different educational levels were selected because of the correlation with sexual behaviour of adolescents. In each school all 17 year old young women of one small 5th grade class were asked to participate. Each group comprised six or seven participants, with a total of 26. Differences in sexual experiences and social classes fostered lively interaction within the groups. The discussions were tape recorded, transcribed, and analysed by content analysis. Knowledge of the daily use and side effects of contraceptives was insufficient. The general practitioner was the most frequently consulted healthcare provider for the first pill prescription, but for a gynaecological examination they thought they had to visit a gynaecologist. Mothers and the peer group were important in teenagers' decision making and should be considered when communicating with adolescent young women.

The sample sizes for interview studies tend to be much smaller than those used in survey or more quantitative research; they may include 30–50 respondents, although this can vary with the research question asked. Similarly, observational studies may be based on a single case study, perhaps focusing on one organisational setting such as a clinic or ward.

Qualitative analyses attempt to preserve the textual form of the data gathered and to generate analytical categories and explanations. This may be done inductively—that is, obtained gradually from the data—or deductively—that is, with a theoretical framework as background (box 2), 10 either at the beginning or part way through the analysis as a way of approaching the data.

Box 2 Investigation of barriers to implementing guidelines for the management of depression in general practice 10

Information about how general practitioners (34 in the intervention group) managed patients with depression were obtained from review of records and assessment of outcome with a standard patient completed questionnaire. The guidelines were issued to the general practitioners and they were then interviewed individually to identify their personal barriers to acting on the recommendations. The interviews were semi-structured and were recorded and transcribed. Psychological theories of behaviour change were used as the framework for analysing the interviews. The transcripts were repeatedly studied independently by several researchers. An example of the barriers identified through use of a theoretical framework relates to the theory of self-efficacy. Some general practitioners did not feel able to ask about suicide risk because they lacked confidence in their ability to use an appropriate form of words. After the general practitioners had been given suggestions for phrases to use, the proportion of patients whose suicide risk had been assessed increased.

There are various software packages designed to assist with the organisation and retrieval of qualitative data. Among those most commonly used are QSR NUD*IST 11 and Atlas Ti. 12 Some of these packages enable sophisticated analysis, allowing the researcher to make theoretical links within the data set; others identify co-occurring codes and provide opportunities to annotate codes or portions of text. All of these processes are integral to qualitative data analysis, but whether software is used or not, the key point about the analysis is that it relies on systematic and rigorous searching of text for categories and themes. These categories and themes are collected together, compared, and re-analysed to develop hypotheses or theoretical explanations. When conducting this coding analysis the researcher gives consideration to the actual words used, the context, the internal consistency, the specificity of responses that is more based on own experiences of respondents, and the big ideas beneath all detailed information. 13 It is important in this process not to lose sight of the narrative and textual structure of qualitative data, and to pay attention to the context of items of data (box 3). While software packages can assist with this labour intensive process and offer great potential for managing large data sets, they are not a substitute for thorough knowledge or “immersion” in the data which enables the researcher to identify connections and patterns, to make systematic comparisons, and to develop interpretations.

Box 3 The coding process

As the researcher comes across an idea or phenomenon, a label is attached. A fragment from adolescent girls' focus groups 9 : “ I always talk to my mother because I can tell her everything. You can always get reliable information from your mother .” Considering the actual words used, possible labels for this fragment are: “communication”, “mother”, “reliable”, “information”.

When the idea or phenomenon reappears in the text, the label is once again attached. “ If it is really necessary, I will talk to my mother. But I don't like that, but .. ”

After reading again all codes and fragments, a better formulation of the code can be found; for this fragment, the label “information sources/mother” can be used.

Specificity: responses based on specific experiences are more important. “ I always talk to my mother . . .” is more specific than “ Girls of my class are used to talk to their mother .”

Codebooks consist of a set of codes that capture the key analytical constructs. Step by step you progress in the level of analysing: raw data ← description ← interpretation ← recommendation.

RELIABILITY AND VALIDITY

When it comes to judging the quality of qualitative research, qualitative methods are often seen as scoring highly in terms of internal validity. By documenting how people really behave in “natural” everyday situations and examining in detail what people mean when they describe their experiences, feelings, attitudes and behaviour, these methods are seen as providing an accurate representation of the phenomena studied. Reliability, which is a particular strength of quantitative research, cannot always be judged so easily within a qualitative study. The settings and groups studied within qualitative research may be unique to the particular context or time period, and it is unlikely that a study can be replicated in the way that a controlled experiment can. Sometimes it is possible to involve other researchers in the analytical process to code the data independently or to discuss emerging themes and categories to try to reach consensus about the interpretation of the data. It is important that a clear account of the data collection and analysis is provided to allow readers to judge the evidence and interpretations presented. This clear exposition is also essential for judging the transferability of findings to other settings or groups.

SOME EXAMPLES OF QUALITATIVE RESEARCH ABOUT THE QUALITY OF HEALTH CARE

Qualitative research has been used in a number of ways to look at the quality of health care. To illustrate how these methods can inform quality improvement, we focus on three areas where qualitative methods have made a contribution: (1) in identifying salient features of care to inform service delivery and organisation; (2) in exploring organisational and other obstacles to change, notably within the context of healthcare evaluation; and (3) by complementing other research approaches either in the preliminary development of measures or in explaining or implementing findings.

Identifying what really matters to patients and care providers

Interviews or focus group methods are especially helpful in assessing user views of services and healthcare provision and in revealing why some care is perceived as poor quality. One interview study looked at patients' perceptions of the reassurance provided by rheumatologists and found that the typical methods of imparting reassurance, often by minimising or downplaying the seriousness of the arthritic condition, were frequently misinterpreted by patients. This study showed that clinicians needed to be more aware of patients' own views and experience of health problems and to adapt their explanations and information giving to increase its salience for this group of patients. 14 Similarly, an Australian study 15 found that the quality of information and reassurance given to women receiving abnormal cervical smear test results was poor and recommended different ways of organising the service to meet women's information needs and to improve the quality of care.

Qualitative work can be helpful in identifying cultural and social factors that hinder or encourage service use. This information can be directly fed back to healthcare providers to help them improve service delivery (box 1). 9 In the UK, focus groups with women from ethnic minorities 16 identified administrative and language barriers which prevented these women from using cervical screening services.

Identifying obstacles to change

By establishing the reasons behind certain behaviours, qualitative research can help to identify barriers to practice change. Success will be more likely if the methods used to implement change are chosen to address the prevailing barriers. 17 Interview studies have been used to identify modifiable factors associated with prescribing by general practitioners 18 and to distinguish doctor and patient related factors that explain a high level of prescribing of antibiotics. 19 Sometimes qualitative research is helpful in understanding how organisations and teams within them work on a day to day basis. Observational research by Hughes and Griffiths 20 on rationing in cardiac care conferences and neurorehabilitation meetings showed how decisions differed between these two types of service. Making these decision rules explicit makes it possible to see how this process might be improved or adapted. Elsewhere, interviews with general practitioners were used in a randomised trial of the implementation of guidelines for the management of depression in general practice to tailor intervention strategies to the needs of practitioners. 10 The identified barriers to change included doctors' perceived ability to assess suicide risk and inform patients about taking their medication (box 2). Further research is needed to elucidate the most efficient methods for identifying barriers to change and to investigate theoretical frameworks that can be used to understand barriers.

The complex structures and behaviours of healthcare organisations are increasingly recognised as critical factors in determining the quality of care. 21 Qualitative methods offer a potential approach to assisting leaders of organisations to appreciate some of the local issues to be considered when introducing new ideas or transforming systems of care. However, more research is needed to investigate which qualitative methods could be most useful, and in what circumstances they should be used.

Another strength of qualitative research lies in its role within formative evaluation. Qualitative methods can provide insights to the process of policy implementation, identifying where and why this is successful, uncovering initial “teething problems”, and suggesting solutions. Qualitative methods have also been used to guide the design of a new “one stop” clinic for women with menstrual problems and to evaluate the service from the patient's perspective. 22

Complementing other research

Qualitative methods have long been used to inform more quantitative research approaches, notably assisting with research design and the development of outcome measures. They have been used in preliminary work for surveys to develop and test questionnaires—for example, the development of quantitative measures of patients' views should begin with an exploration of the views of samples of patients using qualitative methods (box 4). 23

Box 4 Development of a measure of patients' views of care across the primary/secondary interface 23

The aim was to develop a standard quantitative measure of the views of patients referred from primary to secondary care. In order to identify the issues of concern to patients, a purposeful sample of patients who had been referred to secondary care was identified. Six focus group meetings were held and five patients who could not travel to a meeting were interviewed individually. Two researchers independently studied the transcripts and developed coding schemes. Differences were resolved through discussion. Five main themes emerged from the data:

getting into care;

fitting in with staff and systems of care;

knowing what's going on (obtaining information);

continuity of care;

limbo (progress through the healthcare system).

Failures in the first four themes led patients to report feeling as though they were not making progress and had been left in a state of limbo.

They can also be used as part of the process of dissemination of research evidence, and may be especially helpful in making findings relevant to patients and care providers. Thus, although it can be difficult to incorporate the views of patients or carers, qualitative methods may sometimes be useful in informing recommendations and guidelines. 24, 25 The choice of method will depend on the topic and the evidence base, but patient or carer focus groups or interviews can be appropriate if the guideline is concerned with the interpersonal aspects of care, with very small subgroups of patients or carers, or if the available evidence is limited.

CONCLUSIONS

This paper has introduced some of the methods of qualitative research and outlined some ways in which they can contribute to research into quality improvement and management of change. Quality improvement is a major goal of the healthcare systems of most developed countries yet, despite almost two decades of research, effective approaches remain elusive. In order to understand better the human and organisational factors that influence the quality and safety of care, researchers should remember the potential role of qualitative methods. Qualitative research encompasses a range of methods that have successfully been used to explore issues of healthcare delivery from patient and provider perspectives. They can help both to illuminate different facets of “quality” and to inform quantitative approaches to researching health care.

Key messages

There are several methods for collecting data in qualitative research, including both interview based methods and observation based methods.

Sampling methods are theoretical or purposive, and analysis may be inductive or deductive.

These methods may be used to identify what really matters to patients and carers, and can also be used to explain the obstacles to improvement and why improvement does or does not occur.

Qualitative methods could make an important contribution to understanding how to improve the quality of health care.

BIBLIOGRAPHY

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• Calvin Moorley 1 ,
• Xabi Cathala 2
• 1 Nursing Research and Diversity in Care, School of Health and Social Care , London South Bank University , London , UK
• 2 Institute of Vocational Learning , School of Health and Social Care, London South Bank University , London , UK
• Correspondence to Dr Calvin Moorley, Nursing Research and Diversity in Care, School of Health and Social Care, London South Bank University, London SE1 0AA, UK; Moorleyc{at}lsbu.ac.uk

https://doi.org/10.1136/ebnurs-2018-103044

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Introduction

In order to make a decision about implementing evidence into practice, nurses need to be able to critically appraise research. Nurses also have a professional responsibility to maintain up-to-date practice. 1 This paper provides a guide on how to critically appraise a qualitative research paper.

What is qualitative research?

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Useful terms

Some of the qualitative approaches used in nursing research include grounded theory, phenomenology, ethnography, case study (can lend itself to mixed methods) and narrative analysis. The data collection methods used in qualitative research include in depth interviews, focus groups, observations and stories in the form of diaries or other documents. 3

Authenticity

Title, keywords, authors and abstract.

In a previous paper, we discussed how the title, keywords, authors’ positions and affiliations and abstract can influence the authenticity and readability of quantitative research papers, 4 the same applies to qualitative research. However, other areas such as the purpose of the study and the research question, theoretical and conceptual frameworks, sampling and methodology also need consideration when appraising a qualitative paper.

Purpose and question

The topic under investigation in the study should be guided by a clear research question or a statement of the problem or purpose. An example of a statement can be seen in table 2 . Unlike most quantitative studies, qualitative research does not seek to test a hypothesis. The research statement should be specific to the problem and should be reflected in the design. This will inform the reader of what will be studied and justify the purpose of the study. 5

Example of research question and problem statement

An appropriate literature review should have been conducted and summarised in the paper. It should be linked to the subject, using peer-reviewed primary research which is up to date. We suggest papers with a age limit of 5–8 years excluding original work. The literature review should give the reader a balanced view on what has been written on the subject. It is worth noting that for some qualitative approaches some literature reviews are conducted after the data collection to minimise bias, for example, in grounded theory studies. In phenomenological studies, the review sometimes occurs after the data analysis. If this is the case, the author(s) should make this clear.

Theoretical and conceptual frameworks

Most authors use the terms theoretical and conceptual frameworks interchangeably. Usually, a theoretical framework is used when research is underpinned by one theory that aims to help predict, explain and understand the topic investigated. A theoretical framework is the blueprint that can hold or scaffold a study’s theory. Conceptual frameworks are based on concepts from various theories and findings which help to guide the research. 6 It is the researcher’s understanding of how different variables are connected in the study, for example, the literature review and research question. Theoretical and conceptual frameworks connect the researcher to existing knowledge and these are used in a study to help to explain and understand what is being investigated. A framework is the design or map for a study. When you are appraising a qualitative paper, you should be able to see how the framework helped with (1) providing a rationale and (2) the development of research questions or statements. 7 You should be able to identify how the framework, research question, purpose and literature review all complement each other.

There remains an ongoing debate in relation to what an appropriate sample size should be for a qualitative study. We hold the view that qualitative research does not seek to power and a sample size can be as small as one (eg, a single case study) or any number above one (a grounded theory study) providing that it is appropriate and answers the research problem. Shorten and Moorley 8 explain that three main types of sampling exist in qualitative research: (1) convenience (2) judgement or (3) theoretical. In the paper , the sample size should be stated and a rationale for how it was decided should be clear.

Methodology

Qualitative research encompasses a variety of methods and designs. Based on the chosen method or design, the findings may be reported in a variety of different formats. Table 3 provides the main qualitative approaches used in nursing with a short description.

Different qualitative approaches

The authors should make it clear why they are using a qualitative methodology and the chosen theoretical approach or framework. The paper should provide details of participant inclusion and exclusion criteria as well as recruitment sites where the sample was drawn from, for example, urban, rural, hospital inpatient or community. Methods of data collection should be identified and be appropriate for the research statement/question.

Data collection

Overall there should be a clear trail of data collection. The paper should explain when and how the study was advertised, participants were recruited and consented. it should also state when and where the data collection took place. Data collection methods include interviews, this can be structured or unstructured and in depth one to one or group. 9 Group interviews are often referred to as focus group interviews these are often voice recorded and transcribed verbatim. It should be clear if these were conducted face to face, telephone or any other type of media used. Table 3 includes some data collection methods. Other collection methods not included in table 3 examples are observation, diaries, video recording, photographs, documents or objects (artefacts). The schedule of questions for interview or the protocol for non-interview data collection should be provided, available or discussed in the paper. Some authors may use the term ‘recruitment ended once data saturation was reached’. This simply mean that the researchers were not gaining any new information at subsequent interviews, so they stopped data collection.

The data collection section should include details of the ethical approval gained to carry out the study. For example, the strategies used to gain participants’ consent to take part in the study. The authors should make clear if any ethical issues arose and how these were resolved or managed.

The approach to data analysis (see ref  10 ) needs to be clearly articulated, for example, was there more than one person responsible for analysing the data? How were any discrepancies in findings resolved? An audit trail of how the data were analysed including its management should be documented. If member checking was used this should also be reported. This level of transparency contributes to the trustworthiness and credibility of qualitative research. Some researchers provide a diagram of how they approached data analysis to demonstrate the rigour applied ( figure 1 ).

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Example of data analysis diagram.

Validity and rigour

The study’s validity is reliant on the statement of the question/problem, theoretical/conceptual framework, design, method, sample and data analysis. When critiquing qualitative research, these elements will help you to determine the study’s reliability. Noble and Smith 11 explain that validity is the integrity of data methods applied and that findings should accurately reflect the data. Rigour should acknowledge the researcher’s role and involvement as well as any biases. Essentially it should focus on truth value, consistency and neutrality and applicability. 11 The authors should discuss if they used triangulation (see table 2 ) to develop the best possible understanding of the phenomena.

Themes and interpretations and implications for practice

In qualitative research no hypothesis is tested, therefore, there is no specific result. Instead, qualitative findings are often reported in themes based on the data analysed. The findings should be clearly linked to, and reflect, the data. This contributes to the soundness of the research. 11 The researchers should make it clear how they arrived at the interpretations of the findings. The theoretical or conceptual framework used should be discussed aiding the rigour of the study. The implications of the findings need to be made clear and where appropriate their applicability or transferability should be identified. 12

Discussions, recommendations and conclusions

The discussion should relate to the research findings as the authors seek to make connections with the literature reviewed earlier in the paper to contextualise their work. A strong discussion will connect the research aims and objectives to the findings and will be supported with literature if possible. A paper that seeks to influence nursing practice will have a recommendations section for clinical practice and research. A good conclusion will focus on the findings and discussion of the phenomena investigated.

Qualitative research has much to offer nursing and healthcare, in terms of understanding patients’ experience of illness, treatment and recovery, it can also help to understand better areas of healthcare practice. However, it must be done with rigour and this paper provides some guidance for appraising such research. To help you critique a qualitative research paper some guidance is provided in table 4 .

Some guidance for critiquing qualitative research

• ↵ Nursing and Midwifery Council . The code: Standard of conduct, performance and ethics for nurses and midwives . 2015 https://www.nmc.org.uk/globalassets/sitedocuments/nmc-publications/nmc-code.pdf ( accessed 21 Aug 18 ).
• Barrett D ,
• Cathala X ,
• Shorten A ,

Patient consent for publication Not required.

Competing interests None declared.

Provenance and peer review Commissioned; internally peer reviewed.

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• Open access
• Published: 30 May 2024

Longitudinal qualitative study on the psychological experiences of COVID-19 patients based on timing it right framework

• Liangyan Zhang 1 ,
• Chen Zhang 2 ,
• Kesang Li 1 &
• Yan Zhang 3  

Scientific Reports volume  14 , Article number:  12409 ( 2024 ) Cite this article

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Timing it right framework was used as a framework to explore the illness experiences of patients infected with COVID-19 and to analyze the patients' perceptions of the disease and their true inner feelings to provide a reference for the control of infectious diseases. This research adopted a phenomenological research approach to develop a longitudinal qualitative study. A purposive sampling method was used to select participants and 37 patients were recruited. Depending on the principle that participants should have maximum variation and sampling should cease when interviews content saturation is achieved, 16 COVID-19 patients in an isolation ward in Ningbo City, Zhejiang Province were finally included. Data were collected using semi-structured interviews, and the content of the interviews was analyzed by Colaizzi’s 7-step method. The themes of COVID-19 patients’ experiences at various phase were presented as follows: multiple emotions intertwined at the time of diagnosis (anxiety, stressful panic, facing the diagnosis calmly), multiple pressures during the hospitalization period (concerns about the disease, unable to adapt to the ward environment, worrying about future hardship), growth of positive illness experience during the isolation and observation period (sublimated outlook on life, affirmation of the government's anti-epidemic policy, more concerned about their own health), adjustment after returning to society (stigma, loss of previous living environment, problems caused by nucleic acid testing), and adaptation to social life (return to normal life, avoidance of illness experience, post-covid-19 syndrome). The illness experience of COVID-19 patients changed dynamically with time, but a sense of shame and uncertainty about recovery was present throughout the process. Interventions should be developed according to the needs of the patients at different times to inform subsequent optimization of care and management of infectious diseases.

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Introduction.

The ongoing global epidemic of coronavirus disease 2019 (COVID-19) has had a significant impact on human society, primarily in terms of public health. As of 2 February 2023, the reported cumulative number of confirmed cases worldwide is approximately 753 million, with approximately 6,814,900 deaths 1 . Importantly, the actual number of infections worldwide may be higher than the reported data due to factors such as limited testing capacity. The Omicron and Delta strains are variants of coronaviruses with high loads, high infectivity, short incubation times, and antigenic escape 2 . Patients experience long viral nucleic acid conversion times and are more likely to develop severe and critical illnesses, with long periods of hospital isolation and medical observation 3 . Studies have shown 4 that patients with COVID-19 who stay in isolation are prone to psychological problems such as anxiety, depression, and fear. The study 5 showed that infected patients had problems such as fatigue, sleep difficulties, and anxiety after discharge from the hospital, and those with severe lung damage during hospitalization were even more likely to be in the target population for long-term rehabilitation interventions after discharge; however, the study was conducted on patients at the beginning of the 2019 outbreak, and the characteristics of the coronavirus variants can cause various psychological experiences in infected patients. There are currently few studies exploring mild COVID-19 patients' experiences during hospitalization and after reintegration into society 6 . The Timing it Right (TIR) framework was proposed by Cameron et al. 7 in the study of stroke care; it divides the process of disease development into five phases: diagnosis, stabilization, preparation, implementation and adaptation. At present, a number of scholars have used different research methods to study the dynamic needs of patients and caregivers with the TIR framework, and have achieved initial results 8 . Based on the TIR framework, it is possible to understand the changes in the experience of COVID-19 patients at different stages of illness, and formulate corresponding support plans, so that the intervention timing and intervention content can match the needs of patients at the current phase of disease 9 , 10 . Therefore, based on the five phases of disease development in the TIR framework, this research explore the illness experiences of COVID-19 patients in a longitudinal study to provide a reference for the subsequent care of patients with infectious diseases and the development of epidemic prevention and control strategies.

Design and participants

This study utilized a phenomenological research approach to develop a longitudinal qualitative study using the TIR framework. To conduct a longitudinal qualitative study, it is necessary to select specific time points for data collection, and the chosen time frame should be adequate for observing changes in the phenomenon under investigation 11 . In this study, the time frame for data collection was established through two interviews. The first interview (T1) took place during the period when the infected individuals were isolated, and the second interview (T2) occurred 6 months after their reintegration into society. The study employed a purposive sampling method to select patients who had been diagnosed with COVID-19 and were admitted to an isolation ward in Ningbo City, Zhejiang Province, between January and October 2022. The inclusion criteria were as follows: (1) confirmed COVID-19 infection; (2) age above 18 years; and (3) voluntary participation in this study and providing informed consent. The exclusion criteria were as follows: (1) those who were seriously ill and unable to communicate and (2) those with serious psychological or cognitive dysfunction. Those who automatically withdrew or were lost to follow-up during the interview were dropped from the study. A total of 37 patients were recruited for the study, and the sample size of the study was determined based on information saturation of the interviewees 12 . The specificity of the sampling was measured by demographic characteristics and the Self-Rating Depression Scale (SDS) 13 . Sampling ceased when interviews content saturation was achieved. Finally, 16 cases of representative infected patients were included in the study, including patients with no depression (9 cases, 56%), suspected mild depression (1 case, 6%), and suspected moderate depression (6 cases, 37.5%), numbered "N1" to "N16". In this study, two in-depth interviews were conducted with the infected patients, one during their isolation period and another after 6 months of reintegrating into society. Notably, during the second interview, two of the participants exhibited evasive behavior. For example, one participant was very talkative in the first interview, and he was able to talk more about his true feelings and describe them in more details based on the experience of the illness. However, in the second interview, he spoke less and only answered yes, no or fine, showing an evasive attitude. In order to fully understand the thoughts of the participants and enhance the integrity and continuity of the study, after obtaining informed consent, the interviewer supplemented the interview content by contacting their relatives, and returned the transcript of the interview content to the participants for confirmation, so as to ensure the authenticity of the content. The basic information of the study participants is shown in Table 1 .

Data collection

The participants provided informed consent and completed the demographic scale and SDS scale assessment before the interview. The interview outline was designed according to the five phases of diagnosis, stabilization, preparation, implementation and adaptation in the TIR framework. Longitudinal qualitative studies require researchers to use the insights gained from previous interviews to inform the focus of subsequent data collection 14 . The researcher preinterviewed two infected individuals prior to the formal interview and amended the interview outline. The interview outline was as follows. During Phase 1 (T1), the following questions were asked: ① How did you feel when you were diagnosed with COVID-19? ② What was your initial feeling after arriving at the isolation ward? ③ What are your needs and feelings during hospitalization? ④ How do you feel when you go to the quarantine point for medical observation? ⑤ How will the Spring Festival affect you? ⑥ If you are cured and returned to society, what expectations or concerns do you have? During Phase 2 (T2), the following questions were asked: ① What was your mood at the beginning of reintegration? Give an example of 1–2 things that were particularly impressive at that time. ② How do you feel now? How has your life changed? ③ Is there anything particularly troubling you at present? How do you solve these troubles? Do you have any hopes or suggestions? Due to the requirements of epidemic prevention and control, the interview was conducted by telephone, and the interview time was 15–60 min.

Data analysis

The interview content was analyzed by Colaizzi’s 7-step method. The steps are as follows: (1) two researchers carefully read all the original data; (2) they independently identify significant statements that were repeated by multiple participants and were important and meaningful to the research question; (3) they code repetitive and meaningful views by temporarily "suspending" their assumptions and value judgments; (4) they gather ideas after coding to form the prototype of the theme; (5) they write a detailed typical original description; (6) they identify similar ideas and condense them into themes; and (7) they return the topic structure to the participants for verification. The results of the SDS questionnaire were descriptive statistical analyzed by SPSS 25.0.

Quality control

SDS questionnaire collection: during hospitalization, a researcher issued and collected the questionnaire, explained the questions appropriately, and checked the completeness of the answers on the spot. (2) Interview data collection: all researchers in the study received professional training in qualitative research, and all interview data collection was completed by the first author (isolation ward nurse). The researcher kept in touch with the participants during the follow-up period to establish trust and friendly relationships. The researcher used the daily chat information as supplementary information. At the end of each interview, the researcher transcribed the audio-recorded information within 24 h and recorded the tone of voice, pitch change and other information of the participants. (3) Data analysis: data collection and analysis were carried out in parallel, with each of the 2 researchers listening to the audio-recordings and reading the textual information repeatedly, independently summarizing statements of significance, and summarizing the text of the statements. And the themes and subthemes extracted from the collected data were repeated to the participants by instant messaging software to further confirm whether they had the same feeling or experience and record any possible supplemental information. It was explained to the participants at the first interview that the preliminary results would be reported back to them for verification.

This study was reviewed and approved by the Ethics Committee of Ningbo No.2 Hospital (YJ-NBEY-KY-2022-102-01). All methods were performed in accordance with the relevant guidelines and regulations such as ethical standards of the institutional ethics committee and with the Declaration of Helsinki. All participants signed informed consent forms.

An interpretive understanding of the illness experiences of patients infected with COVID-19 was constructed in this study. The analysis yielded five categories and fifteen sub-categories (Table 2 ).

Theme 1: multiple emotions intertwined at the time of diagnosis

Due to different personality characteristics and understanding of the disease, infected patients showed the following emotional changes in the early stage of diagnosis.

Anxiety: since most infected patients learned about their infection suddenly, most of them had significant fidgeting, irritability, insomnia, and felt inexplicably nervous and worried when they were diagnosed or preparing for medical isolation. N5-T1: "I was so anxious when I was diagnosed that I felt like the sky was falling." N9-T1: "Since that time I have not been able to sleep well at night, I wake up after an hour of sleep." N2-T1: "I felt like it was going by so slowly and every day felt like years. Before the quarantine, I was worried that I wouldn't eat or sleep well, and that was true." Some of the infected patients felt upset when they were first diagnosed, as they received many calls for epidemiological investigations from various departments and organizations. N6-T1: "The initial phase has been very busy. I was the first to be infected, and there was a particular focus on me. At that time, my sleep was disturbed."

Stressful panic: the knowledge that there was no effective treatment, the uncertainty of the sequelae and the possibility of recurrence all put the infected patients in fear of the disease at the time of diagnosis, with three infected patients displaying more pronounced despair. N12-T1: "At that time, I was lying in bed for two days feeling like I was going to die. It was bad anyway. I was scared, scared of the after-effects, scared for my life (emotional)." N9-T1: "[Messages on my mobile phone] made me think nonsense. If the virus in my body had stayed, I would have been locked up forever. It gave me a feeling of panic."

Facing the diagnosis calmly: some of the infected patients were not so afraid of the diagnosis because people around them had already been infected. N1-T1: "The mood was a bit panicky, not particularly panicky. Because my in-laws have already been diagnosed, I already have a general idea in my mind." Some infected patients had a more comprehensive understanding of the corresponding symptoms of infection and were more receptive. N11-T1: "Not afraid of the disease. I have read the news that most of the foreign countries are infected, so I am calm." N3-T1: "It was mild… and curable, so I just didn't have much stress anyway."

Theme 2: multiple pressures during the hospitalization period

When patients were hospitalized, the disease itself, positivity for 2019-nCoV nucleic acid, and the specificity of the isolation environment made them feel deeply stressed.

Concerns about the disease: the threat to COVID-19 patients' lives and safety during hospitalization was stressful for those infected, either because of their own experiences of repositivity or because they witnessed others experiencing repositivity. N11-T1: "The biggest concern was that I didn't know how long it would take to be discharged from the hospital, how long it would take to recover … I didn't know if there were any after effects and whether there would be a relapse." N5-T1: "(After being repositive for the third time) I cried all the time during those 2 days when I was isolated again. The last 2 days were fine, (my mood) calmed down, and today I'm a little bit annoyed again, my wife and my youngest daughter they don't seem to have a good nucleic acid result. That aspect is affecting me a lot, a lot of stress (speaking faster)." N14-T1: "There is a feeling of fear in my heart. This is the first time I've had a repositive, and I've heard that there are a lot of repositive people, and I'm scared in my heart." Due to the special nature of COVID-19 patients, the vast majority of them chose to conceal their condition to avoid worrying about their families. N3-T1: "I didn't dare to make a video call to my mother. I was afraid that if my mother knew I was inside the hospital, she would have to worry about me."

Unable to adapt to the ward environment: most infected patients were transferred to isolation wards for medical observation and treatment, and the unfamiliar and confined environment often made them feel uncomfortable. N4-T1: "It feels unreal to be here, the air is treated and the rooms are airtight." Meanwhile, due to the shortage of beds, most isolation wards housed many people, to which some infected patients are not accustomed, and some infected patients were deeply stressed about secondary infections. N2-T2: "I don't like to sleep with other people in the same room. But, since I was a child, I have been timid and I am afraid to sleep alone. I am not used to sleeping in the hospital." N12-T1: "I was worried about my problems and whether sleeping in the same ward would spread the virus to each other, so I never took off my mask." Isolation also prevents infected patients from spending time with their families. During the festive season, which symbolizes reunion, they had to spend time alone. N10-T1: "The arrival of Chinese New Year had an impact on me. There are so many things I can't do because (I can't) be reunited with my family."

Worrying about future hardship: because the whole family was quarantined or because they themselves were the main laborer in the family, most infected patients reported that the long period of isolation had affected their financial income and were worried about the future. N5-T1: "There has been no income for a few months now, which means that life may be hard in the future." Due to the release of information from epidemiological surveys, infected patients are often worried about having the disease known to their acquaintances. N5-T2: "[The flow survey information] would be better to change that column where the surname is written to a number. Because we are the only ones infected in the factory, it is easy for others to guess." Infectious patients worry about social discrimination brought about by the disease and about whether they will still be able to have a suitable learning environment, job, and residence in the future. N5-T1: "I worry about whether it will affect my youngest daughter's ability to go to a better kindergarten." N10-T1: "I feel that I will not be able to find a job if people know about my disease. … I am sure I will be treated differently." "N2-T1: "We are renting a house outside, the landlord knows about it and may not let us stay in this place. What should we do?"

Theme 3: growth of positive illness experience during the isolation and observation period

Patients were under medical isolation and observation during this period. There is deeper thinking after enduring pressure from all sides, and some patients gain growth.

Sublimated outlook on life. Some infected patients were grateful for the dedication of healthcare workers. N1-T1: "Really, I feel that you are all very good. Doctors have it so hard. I didn't feel it before." Some patients thanked the teachers for caring for their children during the infection. N1-T2: "The teachers and classmates are very caring for my daughter. In particular, her class teacher was really nice. There was no one to look after her when she first came out (family members were quarantined for infection). My daughter was alone at home, and I was worried. Her teacher let my daughter go to her house. The teacher said I am not afraid." Some infected patients also said that during the isolation period, they had time to calm down and question their souls and thought more about life. N6-T1: "Actually, when I was in the isolation ward, I had more time and space to think, and then I might think more deeply about something, like the meaning of life. I would find so many things that I just naturally realized."

Affirmation of the government's anti-epidemic policy. N6-T1: "I think our government departments are very committed because our national situation is different from that of foreign countries, with a large population. If our country really doesn't care about controlling the epidemic at all, the medical resources can't keep up." N9-T1: "I fully comply with the rules and regulations of the isolation ward. The country invests a lot of resources. We eat and live medically for free."

More concerned about their own health. The experience of falling ill has made more patients pay more attention to their own health, and they actively participate in sports and pay attention to physical checkups and rest. N11-T1: "It's better to have a medical checkup to see if this virus has any other effects on your body. In the future, I will have regular medical check-ups once every six months or a year. Now, I also started to run (during the quarantine phase), I didn't run much before."

Theme 4: adjustment after returning to society

The infected often return to society in a state of fear and with a deep sense of stigma. Some infected patients have lost their former jobs and living environments, and their finances and lives have been greatly affected. At the same time, the nucleic acid test also brought troubles to their lives after returning to society.

Stigma: infected patients often have a heavy self-psychological burden when they return to society. They are afraid of being rejected and treated differently. The main manifestations are fear of stigma and concealment of medical history. N1-T2: "We definitely have to report to the community when we go back. We have to explain the situation. After explaining the situation, the people in the village will be scared to death, they will ostracize them (brother, parents), and then it will definitely have an impact on my parents and my brother's lives, so we didn't dare to go back." Some infected patients were worried that they would cause others to become infected, causing them to be quarantined as well. N16-T1: "I'm worried that if I go back to being positive in the future, I will infect others, even if it doesn't hurt, will I have to quarantine people for so many days?" With the shame of the disease, many infected patients were unable to go home to their families. N1-T2: "I would love to go back to my hometown. Because my parents are also 70 years old, and I can't take care of them when I'm out of town. But, now I can't go back to my hometown."

Loss of previous living environment. Some infected patients lost their original living and working environments after returning to society. Some COVID-19 patients moved away from their original environments of their own initiative because they were afraid that others would know that they had been infected by COVID-19. N1-T2: "We moved home. But, we are still afraid of bumping into people we know: "Some infected patients were asked not to go to work or to change their working environments for fear of mutual infection in their workplaces. N2-T2: "We were not allowed to go to work in the factory at that time because the other employees didn't agree to let us go to work." N9-T2: "She used to work in Department 5, but the original department didn't want her anymore." A new environment means a new start, which leads to greater pressure on the lives of infected patients. N1-T2: The pressure on my husband's life is too great. I also went to look for a job. After looking for a few days, I felt very sad and found that I could only do more flexible work like takeaway. Life is difficult, we've borrowed a lot of money now, and there's a lot of financial pressure and mental stress."

Problems caused by nucleic acid testing. Because of previous infections, policies require infected patients to have a separate nucleic acid test. This often meant that they had to spend time and effort looking for a separate site where they could do a separate nucleic acid test. N1-T2: "My child can't do a separate nucleic acid test at school anyway, so we have to find a nucleic acid test site by ourselves." When doing the nucleic acid test alone, they were split into two teams, separate from the people doing the mixed nucleic acid test, and the people in their team were faced with more inquiries about infection, which put more pressure on them." N1-T2: "When we went to do the nucleic acid test, the security guard at the door asked once, then the person who checked the identity after the questioning asked again, and the sampler asked again. I had nightmares every day." In addition, they were concerned that doing the nucleic acid test alone would increase the risk of reinfection. N5-T2: "When we do the nucleic acid test alone, we are with people who are at high risk. The book they have registered in we touch it again, register it again and go with them. If I get infected again, I reckon I'm going to go mad." Because of the fear of repositivity, infected patients are extremely concerned about the results of their own and their family's nucleic acid tests." N3-T2: "To be honest, some people, like my wife, have repeated repositive and go to quarantine sites over and over again. Very upset and depressed. I'm worried about my own and my wife's nucleic acid test results."

Theme 5: adaptation to social life

Six months after returning to society, most of the infected patients returned to normal life with the support and tolerance of society, but some of them still avoided infection and concealed their status as recovered persons. Some of the infected patients developed post-COVID-19 syndrome.

Return to normal life. Some infected patients integrated into society with the tolerance of colleagues and friends around them. N2-T2: "Still working as normal. My friends and I still play well and sit together for meals." N8-T2: "I was a bit afraid that my colleagues would laugh at me in various ways before I came to work. But, none of them did." Nucleic acid testing is also gradually becoming less frequent. N7-T2: "In the beginning, it was a single test, now it's all mixed." Some infected patients said that they no longer avoided the fact that they were infected under self-regulation and gradually returned to normal life. T12-N2: "When I first came out of quarantine, whenever people talked about this stuff, I wanted to avoid it and didn't want to hear about it. Now, when people talk about doing nucleic acids, I seem to slowly be able to accept it."

Avoidance of illness experience. Some infected patients still avoided infection and concealed their identities as a recovered person. N16-T2 Husband added: "Whoever mentions this, she is anxious about it. Some old folks called me and asked about this, and she was also a little anxious in her heart. There is nervousness in her heart, and she doesn't want to talk about it anymore." During the interview with N5-T2, the infected patient herself said, "I don't feel anything, it doesn't affect me at the moment. Everything is fine. Don't want to think about it." However, interviewing his lover, he said, "He used to look like a child, he used to laugh and joke around, but now he looks sad every day. He doesn't talk much in his free time." This experience has changed his personality.

Post-COVID-19 syndrome. Some infected patients still have residual weakness, chest tightness, loss of smell, sleep disorders, etc. N14-T2: "The body is a bit different anyway. I'm more tired than I used to be at work, and I'm not as fit as I used to be. Sleep has been bad, easy to wake up. I have no sense of smell." N15-T2: "I feel a bit breathless sometimes when I walk a few steps. I feel tired."

This study conducted a longitudinal exploration of COVID-19 patients' experience based on the TIR framework. In general, the TIR framework has played a good guiding role in the exploration of COVID-19 patients' illness experience. During the diagnosis phase, COVID-19 patients were usually very concerned about their own health problems, and due to great pressure caused by isolation, they were prone to psychological problems. The stabilization and preparation phase of COVID-19 patients were in the long isolation treatment. Patients gradually adapted to isolation treatment and started to plan their life after discharge. They were worried about discrimination and worried that they would never go back to the original life. In addition, because COVID-19 patients were kept in isolation for a long time, some patients began to reflect on the experience of the disease and the past life status, and thus gained growth. The stigma of COVID-19 patients was felt throughout the course of the illness, but it was particularly evident during the implementation and adaptation phase. Due to the stigma and discrimination, some patients actually made great changes to their work and life during this two phase. At this time, social support was particularly important for patients to reintegrate into society. The following discussion provides detailed analysis of the above phenomena.

The results of this study showed that all infected patients diagnosed for the first time had psychological problems such as anxiety, fear, and sleep disorders, and seven patients (43.75%) were suspected of having mild to moderate depression according to the SDS scores, which is similar to the results of the study by Deng et al. 15 . This may be due to the highly contagious nature of COVID-19 and the lack of specific treatment, resulting in infected patients being prone to excessive stress, panic, and even psychological stress disorder at the early stage of diagnosis 16 . At the same time, 14 cases (87.5%) of the infected patients expressed concern about the possibility of "repositivity" after recovery and the existence of sequelae. A related study found that noninfectious viral RNA persisted in most of the "repositive" cases, which may be due to slow disease regression 17 . A positive test does not always mean that the patient is infectious, as it may detect fragments of viral nucleic acid 18 . However, most patients know little about this and develop more anxiety and fear. In contrast, those patients who have knowledge of the new coronavirus tend to have less fear and worry. Cheng Hualing et al. 19 meta-integrated the psychological experience of COVID-19 patients in China and found that more information provided by medical personnel to infected patients about the treatment and prognosis of the disease could eliminate the anxiety caused by the patients' lack of knowledge. Therefore, health promotion should be strengthened, and patients should be encouraged to acquire knowledge of the disease in various aspects, including transmission channels, protective measures, symptom classification, prognosis, etc. Patients’ questions should be patiently answered based on their own conditions, and they should be encouraged to obtain correct information through official authoritative channels to avoid "information panic" 20 .

Four infected patients (25%) in this study indicated that the relatively confined environment and instruments in the isolation area caused feelings of loneliness and helplessness. The isolation treatment measures separated the patients from the outside world, as they left their familiar working and living environments to enter a state of isolation, confinement and monotony. The patients' original lifestyles were completely disrupted, and certain financial losses were incurred. The unfamiliar environment and medical equipment increased the patients' fear and loneliness while also hindering the discharge of their negative emotions. This is consistent with the findings of Wang et al. 20 and Shaban et al. 21 . A retrospective study 22 found that isolation may cause unexpected mental trauma for patients and may even lead to self-injurious behaviors such as suicide. These effects persisted 3 years after desegregation. Psychological disorders can lead to low immunity and reduced motivation for treatment, thus negatively affecting disease recovery 23 . Currently, the treatment and care of patients in isolation wards are mainly focused on the disease itself, with relatively little attention given to the physical and psychological effects of isolation. Improving the treatment environment in isolation areas, providing as much stimulation as possible during the normal routine of work and rest, establishing a good lifestyle, and diversifying hospital activities are of great significance in relieving emotional tension, breaking psychological barriers, and promoting disease recovery 24 . Studies have shown that having sufficient sunlight is particularly effective for psychological relief 25 . Isolation areas should be set up to face south, and lighting measures should be strengthened. Public corridors can be set up in the isolation area so that infected patients can stagger their activities appropriately. Healthcare workers who are fully "armed" can paste their names on their protective clothing to improve communication between doctors and patients and reduce patients' sense of isolation. There are also studies 26 suggesting the use of the Rosenthal effect, that is, using praise, trust and expectation, and other psychological hints to help patients regain confidence and obtain positive motivation to change their own behaviors. By communicating with patients to understand their psychological needs, sources of negative emotions and specific factors affecting their emotions, healthcare professionals, in collaboration with teams from various disciplines, can encourage infected patients to cope positively and provide social support and psychological guidance to improve their quality of life 27 . The patients in this study were often in a state of confusion and worry before discharge and were also often unable to adjust to a good rhythm of life within a short period after discharge. Healthcare professionals can help patients develop a postdischarge transition plan during inpatient isolation so that they can quickly return to their original lives. At the same time, a scale of social reintegration behavior of infected patients with infectious diseases that is suitable for our country should be developed to prospectively investigate the current status of social reintegration of infected patients and to understand the changes in social reintegration behaviors in different periods to take corresponding measures to help such people adapt to their situations as soon as possible.

As a contagious disease, COVID-19 can lead to fear among the population as well as stigma and discrimination against specific groups of people 28 , and patients develop a sense of shame about their illness as a result. The results of this study show that patients often want to keep their experience of the disease confidential. The vast majority of infected patients in this study chose to conceal their illness from their family members. Due to the existence of a sense of shame, patients not only kept their disease experience secret but also often consciously reduced their mobility after discharge from the hospital to avoid infecting others. Patients may actively distance themselves from their friends and relatives, resulting in the loss of an important source of social support and a sense of isolation 29 . There were also patients who did not actively conceal their condition, but friends and colleagues of the infected patients intentionally chose to distance themselves from the infected patients out of fear and rejection after learning of their condition. Six patients (37.5%) in this study were thus forced to leave their original places of residence or work, causing them to develop more negative emotions. On the other hand, the infected patients who indicated that their colleagues and friends treated them no differently than before reported that they resumed normal life more quickly after returning to society. Yuan et al. 19 showed that the social support system of infected patients is an important factor in their posttraumatic growth. Social support based on kinship is the main way for most Chinese people to obtain social support. If this basic relationship is damaged, it prevents infected patients from obtaining the understanding and support of others, which can have a great impact on their physical and mental health 30 . The establishment of a good social support system will enhance psychological health; in contrast, the accumulation of negative emotions will lead to a variety of psychological problems 31 . Healthcare workers in the diagnosis and treatment of COVID-19 patients not only need to give the necessary treatment measures but also need to comprehensively assess the degree of understanding of the disease and social support system of infected patients. Healthcare workers should encourage infected patients to inform their families of their illnesses through daily communication, collaborate with their families to provide relevant psychological care, and improve the level of posttraumatic growth of patients 32 . In addition, the limitations of the public's knowledge of the disease will increase the individual's self-psychological burden, which will deepen the self-perception and experience of public stigma, resulting in the internalization of stigma 33 . Therefore, it is necessary to strengthen the information dissemination of infectious diseases, set up relevant policies for social groups such as communities and companies to avoid the public's rough treatment of infected patients returning to society, to protect the normal work and lives of infected patients and to reduce economic losses. This study shows that the policy benefits given by the government make infected patients believe in the national epidemic prevention policy and thus have confidence in the diagnosis and treatment of the disease. Therefore, state policy supports the reintegration of COVID-19 patients into society through macrocontrol.

Six months after returning to the community, some of the patients in this study still had sequelae of COVID-19, such as malaise, insomnia, chest tightness, and loss of smell. A recent study published in The Lancet 34 also confirmed this phenomenon. Similar studies have shown that the acute phase of COVID-19 and subsequent health damage involves multiple systems, such as the respiratory, neurological, and cardiovascular systems 18 . Given that infected patients at this stage need professional guidance to avoid delaying their illness, we call for greater collaboration among scholars from different countries to share experiences in the treatment of the disease to improve the physical and mental health of the population in the face of the postinfection syndrome caused by the global pandemic of COVID-19 patients.

This study found that there is a lack of clarity in the division of labor between departments and duplication of investigations by various departments in the process of epidemiological investigation.. It is recommended that the relevant departments should strengthen the integration and sharing of information by using big data and increase training in epidemiological investigation to improve efficiency 26 . Knowing the benefits of epidemiological investigation and personal information protection can reduce the uneasiness of infected patients, it is recommended that the media increase the scientific knowledge of epidemiological investigations and, at the same time, hide patients’ last names in the publication of epidemiological investigation information to protect the privacy of infected patients, and prohibit malicious human searches and other behaviors.

Limitations

While the study has its merits, it also has its limitations. First, this study interviewed COVID-19 patients only in Ningbo and did not include patients from multiple regions and centers. Second, this study was conducted during the control phase of the epidemic in China, and except for filling out the SDS scale, which was face-to-face, both interviews were conducted over the phone, and preventing the use of visual aids.

Conclusions

The objective of this study was to explore the perceptions and comprehension of patients infected with COVID-19 during the Chinese new coronavirus epidemic. COVID-19 patients encounter numerous psychological challenges while simultaneously experiencing physical discomfort, isolation, a sense of shame, and uncertainty regarding recovery. While some patients eventually adapt to their circumstances, not all are able to do so. Therefore, it is crucial for healthcare providers and families to provide support in order to facilitate patient adjustment to normal life. Interventions should be tailored according to the specific needs of patients at different stages, informing subsequent optimization of care and management strategies for infectious diseases.

Data availability

The datasets generated and analysed during the current study are not publicly available due privacy protection but are available from the corresponding author on reasonable request.

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This research was supported by Medical Scientific Research Foundation of Zhejiang Province under Grant No. 2023KY1091; Zhejiang Provincial Natural Science Foundation of China under Grant No. LY22H160006.

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Zhang, L., Zhang, C., Li, K. et al. Longitudinal qualitative study on the psychological experiences of COVID-19 patients based on timing it right framework. Sci Rep 14 , 12409 (2024). https://doi.org/10.1038/s41598-024-63215-4

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Lessons learned from conducting qualitative research in a hospital

Affiliation.

• 1 Mennonite College of Nursing Illinois State University, Normal, llinois, US.
• PMID: 25423941
• DOI: 10.7748/nr.22.2.40.e1280

Aim: To examine unexpected barriers to the conduct of hospital research during a study of nurses' activation of rapid response teams.

Background: We interviewed hospital nurses regarding their decisions to activate rapid response teams and encountered unexpected barriers to the conduct of this study in the hospital setting.

Data sources: Experience of conducting qualitative research with bedside nurses in a community hospital.

Review methods: Review of the reports of others who have conducted hospital research.

Discussion: Barriers related to administrative support, environmental distractors, constraints on nurses' time, apparent lack of investment in research by staff and a cumbersome recruitment process are identified. Recommendations on study site selection, timing of research, gaining access to nurses, scheduling and conducting interviews, and transcribing recorded data are made.

Conclusion: As evidence is necessary to deliver safe, quality care, it is important that nurses understand and participate in research. This participation involves not only conducting research, but also serving as subjects. Given the importance of bedside nurses' willingness to engage in research, it is crucial to understand factors that impede or assist their participation.

Implications for research/practice: We offer several recommendations to nurses conducting research in hospitals, including: ■ Seek hospitals that are supportive of research, yet not over-invested in the process. ■ Build extra time into data collection schedules to maximize flexibility and accommodate work-place demands. ■ Emphasise the relevance and benefits of the research to nurses.

Keywords: Hospital research; barriers to research; nurses; qualitative research; recruitment.

• Attitude of Health Personnel
• Data Collection / methods*
• Decision Making
• Hospital Rapid Response Team / organization & administration*
• Hospitals, Community
• Middle Aged
• Nurse's Role*
• Nursing Care / organization & administration*
• Nursing Research / methods
• Nursing Research / organization & administration*
• Qualitative Research*
• Surveys and Questionnaires
• Time Management

Qualitative Research: Getting Started

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Patient experiences: a qualitative systematic review of chemotherapy adherence

• Amineh Rashidi 1 ,
• Susma Thapa 1 ,
• Wasana Sandamali Kahawaththa Palliya Guruge 1 &
• Shubhpreet Kaur 1  

BMC Cancer volume  24 , Article number:  658 ( 2024 ) Cite this article

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Adherence to chemotherapy treatment is recognized as a crucial health concern, especially in managing cancer patients. Chemotherapy presents challenges for patients, as it can lead to potential side effects that may adversely affect their mobility and overall function. Patients may sometimes neglect to communicate these side effects to health professionals, which can impact treatment management and leave their unresolved needs unaddressed. However, there is limited understanding of how patients’ experiences contribute to improving adherence to chemotherapy treatment and the provision of appropriate support. Therefore, gaining insights into patients’ experiences is crucial for enhancing the accompaniment and support provided during chemotherapy.

This review synthesizes qualitative literature on chemotherapy adherence within the context of patients’ experiences. Data were collected from Medline, Web of Science, CINAHL, PsychINFO, Embase, Scopus, and the Cochrane Library, systematically searched from 2006 to 2023. Keywords and MeSH terms were utilized to identify relevant research published in English. Thirteen articles were included in this review. Five key themes were synthesized from the findings, including positive outlook, receiving support, side effects, concerns about efficacy, and unmet information needs. The review underscores the importance for healthcare providers, particularly nurses, to focus on providing comprehensive information about chemotherapy treatment to patients. Adopting recommended strategies may assist patients in clinical practice settings in enhancing adherence to chemotherapy treatment and improving health outcomes for individuals living with cancer.

Peer Review reports

Introduction

Cancer can affect anyone and is recognized as a chronic disease characterized by abnormal cell multiplication in the body [ 1 ]. While cancer is prevalent worldwide, approximately 70% of cancer-related deaths occur in low- to middle-income nations [ 1 ]. Disparities in cancer outcomes are primarily attributed to variations in the accessibility of comprehensive diagnosis and treatment among countries [ 1 , 2 ]. Cancer treatment comes in various forms; however, chemotherapy is the most widely used approach [ 3 ]. Patients undergoing chemotherapy experience both disease-related and treatment-related adverse effects, significantly impacting their quality of life [ 4 ]. Despite these challenges, many cancer patients adhere to treatment in the hope of survival [ 5 ]. However, some studies have shown that concerns about treatment efficacy may hinder treatment adherence [ 6 ]. Adherence is defined as “the extent to which a person’s behaviour aligns with the recommendations of healthcare providers“ [ 7 ]. Additionally, treatment adherence is influenced by the information provided by healthcare professionals following a cancer diagnosis [ 8 ]. Patient experiences suggest that the decision to adhere to treatment is often influenced by personal factors, with family support playing a crucial role [ 8 ]. Furthermore, providing adequate information about chemotherapy, including its benefits and consequences, can help individuals living with cancer gain a better understanding of the advantages associated with adhering to chemotherapy treatment [ 9 ].

Recognizing the importance of adhering to chemotherapy treatment and understanding the impact of individual experiences of chemotherapy adherence would aid in identifying determinants of adherence and non-adherence that are modifiable through effective interventions [ 10 ]. Recently, systematic reviews have focused on experiences and adherence in breast cancer [ 11 ], self-management of chemotherapy in cancer patients [ 12 ], and the influence of medication side effects on adherence [ 13 ]. However, these reviews were narrow in scope, and to date, no review has integrated the findings of qualitative studies designed to explore both positive and negative experiences regarding chemotherapy treatment adherence. This review aims to synthesize the qualitative literature on chemotherapy adherence within the context of patients’ experiences.

This review was conducted in accordance with the Joanna Briggs Institute [ 14 ] guidelines for systemic review involving meta-aggregation. This review was registered in PROSPERO (CRD42021270459).

Search methods

The searches for peer reviewed publications in English from January 2006-September 2023 were conducted by using keywords, medical subject headings (MeSH) terms and Boolean operators ‘AND’ and ‘OR’, which are presented in the table in Appendix 1 . The searches were performed in a systematic manner in core databases such including Embase, Medline, PsycINFO, CINAHL, Web of Science, Cochrane Library, Scopus and the Joanna Briggs Institute (JBI). The search strategy was developed from keywords and medical subject headings (MeSH) terms. Librarian’s support and advice were sought in forming of the search strategies.

Study selection and inclusion criteria

The systematic search was conducted on each database and all articles were exported to Endnote and duplicates records were removed. Then, title and abstract of the full text was screened by two independent reviewers against the inclusion criteria. For this review, populations were patients aged 18 and over with cancer, the phenomenon of interest was experiences on chemotherapy adherence and context was considered as hospitals, communities, rehabilitation centres, outpatient clinics, and residential aged care. All peer-reviewed qualitative study design were also considered for inclusion. Studies included in this review were classified as primary research, published in English since 2006, some intervention implemented to improve adherence to treatment. This review excluded any studies that related to with cancer and mental health condition, animal studies and grey literature.

Quality appraisal and data extraction

The JBI Qualitative Assessment and Review Instrument for qualitative studies was used to assess the methodological quality of the included studies, which was conducted by the primary and second reviewers independently. There was no disagreement between the reviews. The qualitative data on objectives, study population, context, study methods, and the phenomena of interest and findings form the included studies were extracted.

Data synthesis

The meta-aggregation approach was used to combine the results with similar meaning. The primary and secondary reviewers created categories based on the meanings and concept. These categories were supported by direct quotations from participants. The findings were assess based on three levels of evidence, including unequivocal, credible, and unsupported [ 15 , 16 ]. Findings with no quotation were not considered for synthesis in this review. The categories and findings were also discussed by the third and fourth reviewers until a consensus was reached. The review was approved by the Edith Cowan University Human Research Ethics Committee (2021–02896).

Study inclusion

A total of 4145 records were identified through a systematic search. Duplicates ( n  = 647) were excluded. Two independent reviewers conducted screening process. The remaining articles ( n  = 3498) were examined for title and abstract screening. Then, the full text screening conducted, yielded 13 articles to be included in the final synthesis see Appendix 2 .

Methodological quality of included studies

All included qualitative studies scored between 7 and 9, which is displayed in Appendix 3 . The congruity between the research methodology and the research question or objectives, followed by applying appropriate data collection and data analysis were observed in all included studies. Only one study [ 17 ] indicated the researcher’s statement regarding cultural or theoretical perspectives. Three studies [ 18 , 19 , 20 ] identified the influence of the researcher on the research and vice-versa.

Characteristics of included studies

Most of studies conducted semi-structured and in-depth interviews, one study used narrative stories [ 19 ], one study used focus group discussion [ 21 ], and one study combined focus group and interview [ 22 ] to collect data. All studies conducted outpatient’s clinic, community, or hospital settings [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. The study characteristics presented in Appendix 4 .

Review findings

Eighteen findings were extracted and synthesised into five categories: positive outlook, support, side effects, concern about efficacy and unmet information needs.

Positive outlook

Five studies discussed the link between positivity and hope and chemotherapy adherence [ 19 , 20 , 23 , 27 , 28 ]. Five studies commented that feeling positive and avoid the negativity and worry could encourage people to adhere in their mindset chemotherapy: “ I think the main thing for me was just keeping a positive attitude and not worrying, not letting myself worry about it ” [ 20 ]. Participants also considered the positive thoughts as a coping mechanism, that would help them to adhere and complete chemotherapy: “ I’m just real positive on how everything is going. I’m confident in the chemo, and I’m hoping to get out of her soon ” [ 23 ]. Viewing chemotherapy as part of their treatment regimen and having awareness of negative consequences of non-adherence to chemotherapy encouraged them to adhere chemotherapy: “ If I do not take medicine, I do not think I will be able to live ” [ 28 ]. Adhering chemotherapy was described as a survivor tool which helped people to control cancer-related symptoms: “ it is what is going to restore me. If it wasn’t this treatment, maybe I wasn’t here talking to you. So, I have to focus in what he is going to give me, life !” [ 27 ]. Similarly, people accepted the medical facts and prevent their life from worsening; “ without the treatment, it goes the wrong way. It is hard, but I have accepted it from the beginning, yes. This is how it is. I cannot do anything about it. Just have to accept it ” [ 19 ].

Finding from six studies contributed to this category [ 20 , 21 , 23 , 24 , 25 , 29 ]. Providing support from families and friends most important to the people. Receiving support from family members enhanced a sense responsibility towards their families, as they believed to survive for their family even if suffered: “ yes, I just thought that if something comes back again and I say no, then I have to look my family and friends in the eye and say I could have prevented it, perhaps. Now, if something comes back again, I can say I did everything I could. Cancer is bad enough without someone saying: It’s your own fault!!” [ 29 ]. Also, emotional support from family was described as important in helping and meeting their needs, and through facilitation helped people to adhere chemotherapy: “ people who genuinely mean the support that they’re giving […] just the pure joy on my daughter’s face for helping me. she was there day and night for me if I needed it, and that I think is the main thing not to have someone begrudgingly looking after you ” [ 20 ]. Another study discussed the role family, friends and social media as the best source of support during their treatment to adhere and continue “ I have tons of friends on Facebook, believe it or not, and it’s amazing how many people are supportive in that way, you know, just sending get-well wishes. I can’t imagine going through this like 10 years ago whenever stuff like that wasn’t around ” [ 23 ]. Receiving support from social workers was particularly helpful during chemotherapy in encouraging adherence to the chemotherapy: “ the social worker told me that love is courage. That was a huge encouragement, and I began to encourage myself ” [ 25 ].

Side effects

Findings from five studies informed this category [ 17 , 21 , 22 , 25 , 26 ]. Physical side effects were described by some as the most unpleasure experience: “ the side effects were very uncomfortable. I felt pain, fatigue, nausea, and dizziness that limited my daily activities. Sometimes, I was thinking about not keeping to my chemotherapy schedule due to those side effect ” [ 17 ]. The impact of side effects affected peoples’ ability to maintain their independence and self-care: “ I couldn’t walk because I didn’t have the energy, but I wouldn’t have dared to go out because the diarrhoea was so bad. Sometimes I couldn’t even get to the toilet; that’s very embarrassing because you feel like you’re a baby ” [ 26 ]. Some perceived that this resulted in being unable to perform independently: “ I was incredibly weak and then you still have to do things and you can’t manage it ” [ 22 ]. These side effect also decreased their quality of life “ I felt nauseated whenever I smelled food. I simply had no appetite when food was placed in front of me. I lost my sense of taste. Food had no taste anymore ” [ 25 ]. Although, the side effects impacted on patients´ leisure and free-time activities, they continued to undertake treatment: “ I had to give up doing the things I liked the most, such as going for walks or going to the beach. Routines, daily life in general were affected ” [ 21 ].

Concern about efficacy

Findings form four studies informed this category [ 17 , 18 , 24 , 28 ]. Although being concerned about the efficacy of the chemotherapy and whether or not chemotherapy treatment would be successful, one participant who undertook treatment described: “the efficacy is not so great. It is said to expect about 10% improvement, but I assume that it declines over time ” [ 28 ]. People were worried that such treatment could not cure their cancer and that their body suffered more due to the disease: “ I was really worried about my treatment effectiveness, and I will die shortly ” [ 17 ]. There were doubts expressed about remaining the cancer in the body after chemotherapy: “ there’s always sort of hidden worries in there that whilst they’re not actually taking the tumour away, then you’re wondering whether it’s getting bigger or what’s happening to it, whether it’s spreading or whatever, you know ” [ 24 ]. Uncertainty around the outcome of such treatment, or whether recovering from cancer or not was described as: “it makes you feel confused. You don’t know whether you are going to get better or else whether the illness is going to drag along further” [ 18 ].

Unmet information needs

Five studies contributed to this category [ 17 , 21 , 22 , 23 , 26 ]. The need for adequate information to assimilate information and provide more clarity when discussing complex information were described. Providing information from clinicians was described as minimal: “they explain everything to you and show you the statistics, then you’re supposed to take it all on-board. You could probably go a little bit slower with the different kinds of chemo and grappling with these statistics” [ 26 ]. People also used the internet search to gain information about their cancer or treatments, “I’ve done it (consult google), but I stopped right away because there’s so much information and you don’t know whether it’s true or not ” [ 21 ]. The need to receive from their clinicians to obtain clearer information was described as” I look a lot of stuff up online because it is not explained to me by the team here at the hospital ” [ 23 ]. Feeling overwhelmed with the volume of information could inhibit people to gain a better understanding of chemotherapy treatment and its relevant information: “ you don’t absorb everything that’s being said and an awful lot of information is given to you ” [ 22 ]. People stated that the need to know more information about their cancer, as they were never dared to ask from their clinicians: “ I am a low educated person and come from a rural area; I just follow the doctor’s advice for my health, and I do not dare to ask anything” [ 17 ].

The purpose of this review was to explore patient’s experiences about the chemotherapy adherence. After finalizing the searches, thirteen papers were included in this review that met the inclusion criteria.

The findings of the present review suggest that social support is a crucial element in people’s positive experiences of adhering to chemotherapy. Such support can lead to positive outcomes by providing consistent and timely assistance from family members or healthcare professionals, who play vital roles in maintaining chemotherapy adherence [ 30 ]. Consistent with our study, previous research has highlighted the significant role of family members in offering emotional and physical support, which helps individuals cope better with chemotherapy treatment [ 31 , 32 ]. However, while receiving support from family members reinforces individuals’ sense of responsibility in managing their treatment and their family, it also instils a desire to survive cancer and undergo chemotherapy. One study found that assuming self-responsibility empowers patients undergoing chemotherapy, as they feel a sense of control over their therapy and are less dependent on family members or healthcare professionals [ 33 ]. A qualitative systematic review reported that support from family members enables patients to become more proactive and effective in adhering to their treatment plan [ 34 ]. This review highlights the importance of maintaining a positive outlook and rational beliefs as essential components of chemotherapy adherence. Positive thinking helps individuals recognize their role in chemotherapy treatment and cope more effectively with their illness by accepting it as part of their treatment regimen and viewing it as a tool for survival. This finding is supported by previous studies indicating that positivity and positive affirmations play critical roles in helping individuals adapt to their reality and construct attitudes conducive to chemotherapy adherence [ 35 , 36 ]. Similarly, maintaining a positive mindset can foster more favourable thoughts regarding chemotherapy adherence, ultimately enhancing adherence and overall well-being [ 37 ].

This review identified side effects as a significant negative aspect of the chemotherapy experience, with individuals expressing concerns about how these side effects affected their ability to perform personal self-care tasks and maintain independent living in their daily lives. Previous studies have shown that participants with a history of chemotherapy drug side effects were less likely to adhere to their treatment regimen due to worsening symptoms, which increased the burden of medication side effects [ 38 , 39 ]. For instance, cancer patients who experienced minimal side effects from chemotherapy were at least 3.5 times more likely to adhere to their treatment plan compared to those who experienced side effects [ 40 ]. Despite experiencing side effects, patients were generally willing to accept and adhere to their treatment program, although one study in this review indicated that side effects made some patients unable to maintain treatment adherence. Side effects also decreased quality of life and imposed restrictions on lifestyle, as seen in another study where adverse effects limited individuals in fulfilling daily commitments and returning to normal levels of functioning [ 41 ]. Additionally, unmet needs regarding information on patients’ needs and expectations were common. Healthcare professionals were considered the most important source of information, followed by consultation with the internet. Providing information from healthcare professionals, particularly nurses, can support patients effectively and reinforce treatment adherence [ 42 , 43 ]. Chemotherapy patients often preferred to base their decisions on the recommendations of their care providers and required adequate information retention. Related studies have highlighted that unmet needs among cancer patients are known factors associated with chemotherapy adherence, emphasizing the importance of providing precise information and delivering it by healthcare professionals to improve adherence [ 44 , 45 ]. Doubts about the efficacy of chemotherapy treatment, as the disease may remain latent, were considered negative experiences. Despite these doubts, patients continued their treatment, echoing findings from a study where doubts regarding efficacy were identified as a main concern for chemotherapy adherence. Further research is needed to understand how doubts about treatment efficacy can still encourage patients to adhere to chemotherapy treatment.

Strengths and limitation

The strength of this review lies in its comprehensive search strategy across databases to select appropriate articles. Additionally, the use of JBI guidelines provided a comprehensive and rigorous methodological approach in conducting this review. However, the exclusion of non-English studies, quantitative studies, and studies involving adolescents and children may limit the generalizability of the findings. Furthermore, this review focuses solely on chemotherapy treatment and does not encompass other types of cancer treatment.

Conclusion and practical implications

Based on the discussion of the findings, it is evident that maintaining a positive mentality and receiving social support can enhance chemotherapy adherence. Conversely, experiencing treatment side effects, concerns about efficacy, and unmet information needs may lead to lower adherence. These findings present an opportunity for healthcare professionals, particularly nurses, to develop standardized approaches aimed at facilitating chemotherapy treatment adherence, with a focus on providing comprehensive information. By assessing patients’ needs, healthcare professionals can tailor approaches to promote chemotherapy adherence and improve the survival rates of people living with cancer. Raising awareness and providing education about cancer and chemotherapy treatment can enhance patients’ understanding of the disease and its treatment options. Utilizing videos and reading materials in outpatient clinics and pharmacy settings can broaden the reach of educational efforts. Policy makers and healthcare providers can collaborate to develop sustainable patient education models to optimize patient outcomes in the context of cancer care. A deeper understanding of individual processes related to chemotherapy adherence is necessary to plan the implementation of interventions effectively. Further research examining the experiences of both adherent and non-adherent patients is essential to gain a comprehensive understanding of this topic.

Data availability

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request. on our submission system as well.

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First author (AR) and second author (ST) conceived the review and the second author oversight for all stages of the review provided by the second author. All authors (AR), (ST), (WG) and (SK) undertook the literature search. Data extraction, screening the included papers and quality appraisal were undertaken by all authors (AR), (ST), (WG) and (SK). First and second authors (AR) and (ST) analysed the data and wrote the first draft of the manuscript and revised the manuscript and all authors (AR), (ST), (WG) and (SK) approved the final version of the manuscript.

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The review was approved by the Edith Cowan University Human Research Ethics Committee (2021–02896). A proposal for the systematic review was assessed by the Edith Cowan University Human Research Ethics Committee and deemed not appropriate for full ethical review. However, a Data Management Plan (2021-02896-RASHIDI) was approved and monitored as part of this procedure. Raw data was extracted from the published manuscripts and authors could not identify individual participants during or after this process.

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Rashidi, A., Thapa, S., Kahawaththa Palliya Guruge, W. et al. Patient experiences: a qualitative systematic review of chemotherapy adherence. BMC Cancer 24 , 658 (2024). https://doi.org/10.1186/s12885-024-12353-z

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Timely care for age-related macular degeneration: a qualitative study among retina specialists in Israel

• Vicki Myers 1 , 3   na1 ,
• Osnat Luxenburg 2   na1 ,
• Rachel Wilf-Miron 1 , 3 &
• Hani Levkovitch Verbin 4 , 5  

Israel Journal of Health Policy Research volume  13 , Article number:  28 ( 2024 ) Cite this article

Metrics details

Age-related macular degeneration (AMD) affects quality of life and independence, and its incidence and prevalence are increasing due to ageing of the population. Access to effective timely treatment can improve vision and reduce incidence of blindness. This study aimed to explore the perspectives of ophthalmologists in the Israeli public healthcare system regarding timely treatment of AMD patients.

Qualitative semi-structured interviews were conducted in 2020-2021 with 22 senior ophthalmologists, from 10 general hospitals and from two HMOs, representing different geographic regions. All interviewees specialize in retinal diseases and work with AMD patients. Interviews discussed patient pathways involved in the diagnosis and treatment of AMD, access to care, and obstacles to timely care. Thematic analysis was conducted.

Based on the interviews, we describe the usual referral and treatment pathways. Themes included regional disparities, long wait times in some areas, a lack of retina specialists, differences in referral pathways, inappropriate use of emergency department to obtain timely treatment, and second-line treatment not fully covered by insurance, most affecting the weakest segments of the population.

Conclusions

Loss of vision incurs high health and societal costs. In the context of insufficient medical manpower in Israel, the healthcare system will need to assess future resources to cope with accumulating burden of AMD cases over time in an ageing population. Precise referral information, and simultaneous referral to imaging and retinal clinics, may minimize delays in treatment. Awareness of AMD symptoms and the importance of early intervention could be highlighted by campaigns, particularly among high-risk groups.

• Interviews with hospital-based and community ophthalmologists showed regional disparities in AMD treatment, with long wait times and a lack of retina specialists in some areas.

• Differences in referral pathways, inappropriate use of emergency department to obtain timely treatment, and second line treatment not fully covered by insurance were highlighted.

• The healthcare system will need to assess future resources to cope with accumulating burden of AMD cases over time in an ageing population

• Precise referral information, and simultaneous referral to imaging and retinal clinics, may minimize delays in treatment.

• Awareness of AMD symptoms and the importance of early intervention should be emphasized in high-risk groups.

Introduction

Age-related macular degeneration (AMD) is responsible for around 50% of cases of legal blindness around the world [ 1 ]. Patients with AMD suffer a significant decline in quality of life and increased dependence [ 2 ]. According to a systematic review conducted in 2014, AMD is projected to afflict 288 million people around the world by 2040, with a current pooled prevalence of 8% at age range 45-85 [ 3 ]. Early stage AMD is more prevalent than late stage, or neovascular (‘wet’) AMD (8% and 0.4%, respectively) [ 4 ]. Meta-analysis of the literature published in both English and Chinese databases up to March 2021, estimated the projected number of new cases of early and late AMD in 2050 would be 39.05 million and 6.41 million, respectively [ 5 ].

In the last decade, intravitreal anti-vascular endothelial growth factor (anti-VEGF) or anti-angiogenic therapy has become the standard of care in neovascular AMD, demonstrating efficacy in preventing vision loss [ 6 ]. The three main drugs used are Bevacizumab (Avastin), Ranibizumab (Lucentis) and Ilea.

Timeliness of treatment is crucial in AMD. Access to effective and timely treatment can improve vision and reduces the incidence of blindness [ 7 ]. Delays can lead to deterioration of sight and irreversible damage, with patients benefitting less from treatment. Best practice guidelines developed by a UK group of retinal specialists recommend early diagnosis, referral to a macular clinic within 1-2 days, and prompt access to treatment within 14 days of initial referral [ 6 ]. Improvement following treatment is often assessed by gain in letters in the visual acuity chart and OCT (ocular coherence tomography) parameters [ 8 ].

AMD affects mostly older populations, who are frailer, more vulnerable, have less consumer power, and often poorer knowledge of navigating the health system. AMD may coincide with other chronic diseases which appear at advanced age.

Israel has universal health coverage through its National Health Insurance (NHI) law with four health maintenance organizations (HMOs) operating as insurers and providers of services and a mix of government, public, private and health-fund owned and operated hospitals. The HMOs provide a uniform list of health services, known as the "Health Basket", for all members. A large proportion of the Israeli population have additional health insurance. Around 80% hold supplementary insurance through the HMOs, and 35% pay for private commercial health insurance; 32% have both. Globally, as more new medical technologies become available, with increasing costs, inevitably the latest and most effective treatments are not always able to be publicly funded, requiring use of complementary or private insurance to subsidize treatment.

This study aimed to explore the perspectives of ophthalmologists working in the Israeli public healthcare system regarding timely treatment of patients with AMD.

A qualitative research design was chosen, to allow for in-depth understanding of the issues regarding care pathways and challenges in providing timely care. The following stages were conducted:

Consultation with a senior ophthalmologist (HVL) and a researcher experienced in issues of access to care (RWM) about the milestones of diagnosis and care for AMD and obstacles to timely care that should be explored, respectively.

Design of a semi-structured interview guide including around 20 questions regarding wait times, treatment of urgent cases, the treatment process, and barriers to timely treatment.

Interviews were conducted between July 2020 and July 2021 with a total of 22 senior ophthalmologists. Ten participants were senior ophthalmologists or ophthalmology department heads from 10 different general hospitals across Israel’s public healthcare system and 12 were community ophthalmologists from two of the four HMOS. All interviewees specialize in retinal diseases and work with AMD patients. All geographic regions were represented (North, South, Centre/Tel Aviv, Jerusalem).

Interviews were transcribed and the transcripts carefully analysed by the authors. Details of the usual patient pathways involved in the diagnosis and treatment of AMD were obtained from participants and are described below. Emerging themes were identified according to Braun and Clarke’s approach to thematic analysis, an iterative method for identifying and reporting patterns as themes in qualitative data [ 9 ]. Themes emerged relating to barriers and obstacles to timely treatment, regional disparities, use of emergency services, the burden of accumulating cases, and issues with funding of second-line treatment. Themes were discussed and revised by all the authors.

Based on the interviews, we describe the usual referral and treatment pathway:

Referral from an ophthalmologist – The patient arrives complaining of deteriorating vision and undergoes a full eye examination by a community ophthalmologist including pupil dilation for diagnosis. Ophthalmologists sometimes - but not always - write on the referral ‘suspected (wet) AMD’, which speeds up processing and likelihood of fast treatment. In some areas, wait time for an eye doctor are long, extending the time to treatment initiation. The community ophthalmologist can either refer to optical coherence tomography (OCT), or refer directly to the retina clinic.

Imaging – OCT is a routine exam required for the diagnosis and follow-up of patients with AMD. OCT is performed either in the community or at a hospital outpatient clinic. Waiting times (WT) for OCT in the community are generally longer, so if the referral was to community OCT, it will likely delay the start of treatment. There are sometimes also delays in getting the OCT report, which requires a trained ophthalmologist.

Confirmation of diagnosis by a retina specialist – required for definite diagnosis of AMD. In some regions there is a lack of retina specialists, which causes long WT and delayed treatment. In some hospitals the wait to see a retina specialist can be 2-3 months. Therefore patients sometimes arrive via the ER as a point of entry to the hospital-based system of ophthalmic care.

Treatment initiation – intraocular injections -  Patients make an appointment for treatment initiation. At the wet stage, it is important to begin treatment within a week to 10 days. The first line of treatment is Avastin, provided to the vast majority of patients. Avastin is provided without cost as part of the basket of health services covered by National Health Insurance. Lucentis, the second line treatment, is more problematic regarding co-payments, since it is very expensive (equivalent of USD 1000 per injection) for the individual patient who does not have private health insurance (commercial or supplementary health insurance, the latter offered by the HMOs). [ 10 ]

Arrival via ER – Many patients obtain treatment via the Emergency Room (ER), which often leads to faster diagnosis and initiation of injections, rather than waiting for an outpatient appointment. Sometimes the referring community ophthalmologist will refer patients to the ER as they know it is a faster route to treatment, especially with hospitals known to have longer waiting lists.

Israel’s AMD landscape – main challenges

Regional disparities.

Differences between hospitals and between regions were evident in the testimony of the ophthalmologists interviewed, highlighting somewhat of a "postcode lottery” (i.e., different chances of getting timely care in different geographic areas) in AMD treatment in Israel.

In the central region, and larger hospitals, treatment occurs within an acceptable time (for example, in two large hospitals in the Tel Aviv region, care was usually initiated within one or two weeks of referral), with few bottlenecks along the way. In this region, the number of ophthalmology clinics and retina experts has increased in recent years, reducing - or preventing the increase - of waiting times.

In more rural areas, there is a lower proportion of retina experts per population, both in the community and hospital settings, which leads to long delays, and eventually might result in poorer outcomes. The insufficient number of community specialists results in more patients utilizing the hospital ambulatory clinics for diagnosis and injections. Most ophthalmic specialists are not retina specialists – a sub-specialty required to make a diagnosis of AMD.

Waiting times

Physicians discussed the importance of starting treatment quickly for urgent cases with wet stage AMD. Many described how the most urgent cases do tend to receive timely treatment, though several factors may delay treatment.

In most of the larger, more central medical centers, WT from referral by a community-based ophthalmologist to admission in a specialty retina clinic are short, around a week to ten days. However, in some of the smaller peripheral hospitals WT can be a month to six weeks, which is considered too long. Furthermore, even in some of the larger central hospitals, a patient can wait more than a month if the referral is incomplete or inaccurate, i.e. not stating the problem as urgent or specifying “wet AMD”. Waiting time can also be delayed by the time taken to get authorization (voucher covering the costs) from the HMO for the imaging test (OCT) which is crucial for the diagnosis, or for the outpatient clinic visit. Following diagnosis and treatment initiation, delays might be caused when patients need to provide HMO authorization for the purchase of second-line medication, or need to find alternative funding if they do not have private insurance that covers most of the cost of the medication.

Some physicians refer to the retina clinic but not to the OCT imaging test, or to OCT and then to the retina clinic, instead of referring to both at the same time. This is another reason for delayed diagnosis and care. Patients with comorbidities are further at risk. Coinciding ophthalmic issues, such as diabetic retinal problems or cataract, may make diagnosis of AMD more challenging. Furthermore, some ophthalmologists refer to a general ophthalmology outpatient clinic, not to a specialty retina clinic, thus delaying diagnosis and initiation of care.

Effect of the COVID-19 pandemic

During the national lockdowns, some hospitals provided home visits for intra-ocular injections, and others arranged mobile units, to prevent vision lost due to discontinuation of care, but many did not provide this service. The number of patients attending for injections dropped briefly during the first wave of pandemic activity (March-April 2020), but quickly returned to normal. Some hospitals called patients who missed appointments to emphasize the importance of continuing treatment, stressing the preventive measures taken by the hospital staff to protect patients from contracting the virus. Other centers reported on clinics being closed, patients missing appointments and a disruption in continuity of care.

Copayments system: Costs and Funding of second line medicines

Interviewees discussed how in cases where a patient is not responding well to first line, they should be offered second-line treatment, which is very expensive and not covered by national health insurance. The problem of copayments for second-line medicines means not everyone gets optimal treatment. Even with complementary or commercial insurance, the patient contribution (out-of-pocket co-payment costs) for this medication is high. If patients do not have any kind of private insurance, or do not know how to navigate the system to utilize existing insurance, they may not receive the best or most appropriate treatment. The proportion of health consumers with complementary insurance varies by sociodemographics: 50% in the lower and 90% in the upper income groups; and 38% and 86% among Arab and Jewish populations, respectively [ 11 ]. In the geographic periphery, with a larger proportion of lower socio-economic status (SES) population, fewer patients have private insurance. Patients are thus more at risk of bearing the burden of uncovered medication costs, often resorting to assistance from non-governmental organizations (NGOs) that support medication expenses, or foregoing treatment altogether due to financial constraints.

Inappropriate utilization of emergency services

Numerous physicians referred to the ER as point of entry for treatment. Though AMD is not considered an acute urgent condition requiring ER treatment, in some regions a high percentage of patients are referred via the ER in order to overcome delays and receive more timely treatment. One hospital in the North reported that 90% of patients with wet AMD are referred via the ER. Other hospitals reported a much lower proportion. According to the interviewees, presenting at the ER results in fast treatment initiation; if the patient arrives during the morning shift, they will receive the first injection later on the same day. From a professional and managerial perspective, this pathway is a waste of a scarce resource that might cause congestion and sub-optimal care for urgent cases.

Accumulating cases

Each hospital receives several new AMD cases per month, but treatment is ongoing. For example, at a hospital in the South, the interviewed physician explained that there are around 10 new cases a month, equal to the number reported in two large central hospitals, and every month these join the existing cases, requiring regular injections. In contrast, in a hospital in the North, the interviewed physician reported only around 1 new patient every week or two, and a second Northern hospital reported 3-4 new patients per month, joining the hundreds already on treatment. Physicians referred to the increasing case burden - given the growing numbers of patients requiring regular injections, the total number of cases requiring treatment is continually rising. This rise is augmented by the ageing of the relatively young Israeli population, while the number of treating physicians does not rise accordingly, putting more and more pressure on existing teams. In the near future, ophthalmology departments will need more resources to deal with the ever-increasing number of AMD patients, or alternatively, less resource-intense treatments to prevent deterioration of vision in this population.

Patient-related delays in seeking treatment

Physicians also mentioned patient-related delays in seeking treatment as patients often fail to notice or are unaware of the changes in their vision. AMD is sometimes diagnosed at a routine check-up.

The advent of anti-VEGF treatment for preventing vision loss in patients diagnosed with AMD over the last decade has revolutionized treatment, turning this into a chronic disease which however requires ongoing treatment, for many years. New patients are added to the list every day, while existing patients remain on the list, which gets longer and longer. Furthermore, intra-ocular injections, performed by the same team, are also required for patients with diabetes, whose numbers are also on the rise. The healthcare system will need to assess future resources to cope with accumulating burden of AMD cases over time in an ageing population.

Physicians and managers in ophthalmology outpatient and hospital departments expressed the need for more trained staff (i.e. retina specialists) for the diagnosis and treatment of AMD, nationwide, and especially in the more rural locations, where a dearth of retina specialists is already evident, exacerbating disparities. Physicians additionally emphasized the importance of precise referral information, and simultaneous referral to imaging and retinal clinics, which may minimize delays in treatment.

Research in other countries has also examined barriers to optimal AMD care. A qualitative study in Australia classified barriers to effective AMD care into 3 categories – structural or health-system related factors such as costs/funding and access to services; clinician-centered factors including the referral pathway, communication issues, skills and knowledge; and patient-centered factors such as compliance, denial, trust and lifestyle changes [ 12 ]. The barriers that arose in the current study in the Israeli healthcare system were more system-based, and some clinician-based factors to be addressed, rather than patient factors.

However, awareness of AMD symptoms and the importance of early intervention could be better highlighted by a public health campaign, particularly among high-risk groups (for example smoking has been noted as an independent risk factor [ 5 ]). A UK study sought to discover the reasons for delay in diagnosis of AMD, and found that in around a third of cases, patients were unable to self-detect symptoms; and of those who did, only half sought help quickly [ 13 ]. This indicates that delays may already occur before the patient reaches the ophthalmologist. This difficulty in diagnosis may be more acute in patients with additional comorbidities.

Some limitations should be considered – participants were a small sample of senior ophthalmologists (including heads of departments) though efforts were made to recruit from different types of hospitals (governmental and HMO-owned) and from different regions (centre and periphery). Regarding community physicians, two out of the four HMOs were represented. Interview data were kept anonymous to allow participants to speak freely.

Loss of vision, or decreased vision, results in dependency and reduced quality of life, as well as incurring high societal and healthcare costs. Health systems, including Israel’s public health system, will need to look ahead and increase available resources to cope with an increasing cumulative caseload for AMD in the coming years. Israel already has fewer physicians per population than the OECD average (3.19 vs 3.5 per 1000 in 2021), and certain specialties, including retina, are underpowered [ 14 ]. A better distribution of staff and resources may be necessary to address regional inequalities. HMOs may need to assess whether patients with AMD – including those without complementary insurance, frequently the weakest segments of the population – are getting the most optimal treatment, when second-line medication is required. Physicians could help their patients access more timely care, for example with more precise referral information, and simultaneous referral to imaging and retinal clinics, to avoid unnecessary delays in treatment. Clear guidelines on this may need to be issued by professional associations.

With regard to patients, it may be necessary to design a campaign to raise awareness of the importance of consulting an ophthalmologist for decreasing visual acuity, often perceived as a “normal ageing symptom”. Patients should be empowered to recognize and acknowledge typical symptoms of AMD and act accordingly, particularly in high-risk groups.

The major policy implications of the current study relate to the urgent need of the healthcare system to assess available and future resources to cope with increasing demand in the retina specialty in an ageing population. This includes the consideration of ways to increase the number of physicians choosing this specialty, for example incentivizing neglected specialties, as well as horizon scanning for new technologies in the field, for more effective and less resource intense treatment for AMD.

Availability of data and material

The datasets analysed during the current study available from the corresponding author on reasonable request.

Abbreviations

Age-related macular degeneration

Emergency room

Health maintenance organization

National Health Insurance

Ocular coherence tomography

Vascular endothelial growth factor

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Acknowledgements

We thank the doctors who kindly gave their time to participate in the research and share their experience with the research team.

Israel National Institute of Health grant number: 9.19 2019/4

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Vicki Myers and Osnat Luxenburg are joint first authors.

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Center for Healthcare Technology and Innovation Policy Research, Gertner Institute of Epidemiology & Health Policy Research, Sheba Medical Center, Ramat Gan, Israel

Vicki Myers & Rachel Wilf-Miron

Medical Technology, Health Information and Research Directorate, Ministry of Health, Jerusalem, Israel

Osnat Luxenburg

School of Public Health, Faculty of Medical & Health Sciences, Tel Aviv University, Ramat Aviv, Israel

Ophthalmology Department, Faculty of Medical & Health Sciences, Tel Aviv University, Ramat Aviv, Israel

Hani Levkovitch Verbin

Glaucoma Service, Goldschleger Eye Institute, Sheba Medical Center, Tel-Hashomer, Israel

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OL, RWM and HLV conceived the idea and obtained funding; VM and RWM interviewed physicians and summarized the results; VM wrote the draft paper; RWM, HLV and OL reviewed and revised the paper and all authors approved the final version.

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Correspondence to Vicki Myers .

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All methods were performed in accordance with the ethical standards as laid down in the Declaration of Helsinki and its later amendments or comparable ethical standards. Ethics approval for the study was received from Sheba Medical Center Helsinki committe number 7465-20-SMC, all experimental protocols were approved. The need for written consent from participating physicians was waived, oral consent was given prior to interviews.

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Myers, V., Luxenburg, O., Wilf-Miron, R. et al. Timely care for age-related macular degeneration: a qualitative study among retina specialists in Israel. Isr J Health Policy Res 13 , 28 (2024). https://doi.org/10.1186/s13584-024-00616-w

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The early career resilience experience of generation Z newly graduated registered nurses in standardized training in the emergency department: a qualitative study in Shanghai

• Peng Han 1   na1 ,
• Yingying Sun 2   na1 ,
• Huifeng Chen 3   na1 ,
• Yue Liu 1 ,
• Shuyang Liu 1 ,
• Jing Wang 1 ,
• Chunwei Chi 1 ,
• Zhenjuan Dai 4 ,
• Jing Chen 5 ,
• Li Zeng 6 &
• Jinxia Jiang 1  

BMC Nursing volume  23 , Article number:  391 ( 2024 ) Cite this article

Metrics details

The period of standardized training is a transitional stage when Generation Z newly graduated registered nurses (Gen Z NGRNs) change their role from student to nurse. Affected by the COVID-19, they lack clinical practice and practicum experience in emergency departments in their university studies. At the beginning of career, they are under great pressure. Resilience is one of the factors that reduce their stress level and increases endurance. It is of interest to understand how this representative group of nurses gained and played the experience of resilience early in their careers.

To explore Gen Z NGRNs’ experience and process of resilience, to provide a new perspective and theoretical basis for psychological rehabilitation or intervention of medical staff who experienced transition shock.

This study employed a qualitative design based on the phenomenological approach. 18 nurses from a third-level class-A hospital in Shanghai who participated in standardized training in emergency department were enrolled using purposive sampling. Data collection was through in-depth and semi-structured interviews and continued until reaching data saturation.

The investigation uncovered three themes and ten subthemes. Pressure and challenge contained high workload and high risk coexist, death’s stress response, more emergencies and high professional requirements. Coping and adaptation contained team help, psychological restructuring, peer support, transformational leadership. Reflection and planning contained enhance learning, appreciate life.

Conclusions

Our study described the embodiment and coping experience of the physical and mental stress faced by Gen Z NGRNs during their standardized training in the emergency department. It is emphasized that nurse educators should pay attention to the character and actual needs of Gen Z NGRNs, explore and formulate strategies, so as to guide NGRNs to quickly adapt and grow in the new role. The ultimate goal is to increase nurse retention and improve the quality of nursing.

Peer Review reports

Introduction

The department of emergency medicine is the department with the most concentration of severe patients, the most abundant types of diseases, and the most difficult rescue tasks in the hospital system. It is the department that all emergency patients must contact after admission. With the development of medical technology, the emergency department has gradually evolved into an emergency medical service and research center integrating emergency diagnosis, emergency treatment and intensive care, providing the most timely life-saving channel for acute, severe and critical patients [ 1 ]. However, the emergency department has the characteristics of more emergencies and critical patients, high mortality of patients, high work intensity and occupational exposure risk, which puts forward strict requirements for the medical staff of the emergency department, who need to have the ability to judge and solve problems independently, and take emergency treatment measures in a limited time to treat critically ill patients. The medical level, the quality of nursing work and the comprehensive quality of medical staff in the emergency department determine the cure rate of patients, and reflect the overall level of the hospital [ 2 ]. In China, all nursing students spend about 30 h to complete the specialized course of “Acute and Critical Care Nursing”, and in the clinical practice, they spend 1–2 months in the emergency department, where they develop basic skills in emergency care, which is helpful to their work and improves their theoretical knowledge. Considering the complexity of emergency care, it is necessary to pay close attention to the training and development of new forces in the emergency department, and improve their professional quality through standardized training methods.

Newly graduated registered nurses (NGRNs) are nurses who have obtained the qualification of nursing post after graduation from university and have just entered the hospital nursing post for less than 2 years [ 3 ]. Although NGRNs have experienced the learning of professional knowledge in school and the training of clinical practice, they are in the initial stage of entering the formal work in the hospital. The majority of NGRNs in China today come from Generation Z (born between 1995 and 2012), the latest generation of graduates who have completed their nursing education. Generation Z (Gen Z) in China is the “Second-Generation of China One” (descendants of the first only children, who are also only children) and constitute about 19% of the country’s population. They live in China’s “4-2-1 families” (four elderly, two young, and one child), with unique intergenerational characteristics. Figure  1 showed the family composition of Gen Z’s parents and grandparents (they have no siblings or cousins). They were born in an era of material abundance, rapid economic development and rapid advances in information technology. Compared to other generations of young people, Gen Z generally received a high level of education, they have broad vision, rational thinking, value the quality of life, and have a unique set of cognitive standards. And they are familiar with the Internet and are the main force in using social media to communicate.

China’s Gen Z “4-2-1” family diagram

Standardized training is a transitional stage when Gen Z NGRNs change their role from student to nurse. In 2016, the National Health Commission of China issued the “Training program for Newly Nurses (Trial)”, which put forward clear requirements for the training of NGRNs. The aim is to equip them for clinical nursing positions through a two-year systematic education of theoretical knowledge and clinical skills, in which the period in the emergency department is usually 3–6 months [ 4 ]. In the emergency department, a preceptor is assigned to each NGRN. These preceptors are responsible for the guidance, supervision and assessment of NGRNs, helping them to build competencies. The qualification of the emergency preceptor is recognized by the hospital nursing authority, and it is necessary to have the medium-grade professional title or above and pass the annual assessment to obtain the qualification. Preceptors are responsible for the training of acute and critical disease nursing and the teaching of clinical skills, as well as the cultivation of professional values and psychological help for NGRNs. The teaching content of standardized training in the emergency department includes the use of first aid equipment and emergency management, risk assessment and pre-control of critically ill patients, emergency management of batch casualties, first aid operation (CPR, simple breathing apparatus, etc.). Only by fully mastering the skills, reaching a certain workload, and obtaining the approval of the emergency preceptor, can the standardized training task be completed. After the training, the NGRNs evaluate and give feedback to the preceptors, so as to determine the amount of extra reward for the preceptors, which improve their teaching literacy.

However, among the medical staff in the emergency department, Gen Z NGRNs in standardized training are the group with greater pressure crisis. Most of them have never or rarely faced with acute and critical cases, and lack rich professional experience and excellent physical quality [ 5 ]. At the same time, affected by the COVID-19, some offline courses in the university have been transformed into online teaching. For the protection of nurse students, the university’s nursing practicum rotation plan has been compressed and the clinical practice in the emergency department has been canceled. Due to the lack of sufficient clinical practice and internship experience in the emergency department, they are under great pressure in the early days of entering such a busy department. They are easily affected by knowledge, responsibility, role and relationship, and have feelings and experiences of confusion, doubt, confusion and unclear positioning. This work adjustment disorder is called Transition Shock [ 6 ]. Studies have shown that the turnover rate of NGRNs in the first year of their career can reach 4-54% [ 7 ]. The insufficient competency of NGRNs caused by subjective or objective factors will have a great impact on the treatment effect and safety of patients, such as medical errors, nosocomial infection and mortality [ 7 ].

Resilience can be interpreted as a mental ability or process of an individual. It implies the ability to bounce back or recover easily when confronted by adversity, trauma, misfortune, or change [ 8 ]. In addition, psychological resilience is a process through which a series of individual qualities interact dynamically to enable individuals to quickly recover and successfully cope with great pressure and danger. With the development of positive psychology, resilience has attracted more and more attention as a positive psychological quality for individuals to successfully cope with adversity. For nurses, resilience is one of the factors that reduce their stress level and increases endurance. Studies have found that 35.9% of nurses may experience job burnout after experiencing adversity or traumatic events, and nurses with high levels of resilience have higher job satisfaction and better career development [ 9 ]. During the transition process of standardized training, Gen Z NGRNs changed their thinking and behavior in the face of stress to maintain psychological balance, and the resilience experience was the tool to support their growth. It is of interest to understand how this representative group of nurses gained and played the experience of resilience early in their careers.

Materials and methods

Study design.

The researchers conducted a descriptive phenomenological approach to explore the experiences of resilience of Gen Z NGRNs in standardized training in emergency department in Shanghai. It was conducted through face-to-face semi-structured interviews.

Ethics approval and consent to participate

Informed consent was obtained from all participants. The Institutional Review Board of Shanghai Tenth People’s Hospital (Shanghai, China) approved the study (Approval No. 23KN25). Each participant read the informed consent carefully and signed an Electronic Consent Statement prior to the start of the interview. Permission was obtained from the participants to arrange one-onone individual interviews. All methods were carried out in accordance with relevant guidelines and regulations in this section.

Participants

A purposive sampling technique in a third-level class-A hospital (the highest level in the classification of medical institutions in China) in Shanghai was used to select participants who have experience of this phenomenon and can clearly express it. The inclusion criteria were as follows: (1) newly qualified nurses in a third-level class-A hospital in Shanghai; (2) born between 1995 and 2012; (3) undergoing standardized training in the emergency department at least three-month; and (4) willing to participate in this study. An invitation was sent via email to ask for purposive sampling of NQNs to participate in individual interviews.

Data Collection

Semi-structured, face-to-face interviews were conducted in June 2023. As shown in Table  1 , we developed a semi-structured interview guide for data collection. Participants shared their resilience experiences and psychological feelings, which were explored until they fully understood emerging themes. The guide commenced the interview with encouraging questions. If necessary, the interviewer would ask more in-depth and specific follow-up questions. It must be emphasized that the participants had no relationship with the researchers before the study began and were previously unknown to them. In addition, two nurses were selected for a pre-interview prior to data collection to ensure the clarity of the questions and to identify any potential problems. The pre-interviews were treated as tests and were excluded from the analysis. Formal interviews lasted 30 to 60 min each, were audio recorded with permission, and participants’ responses, including nonverbal cues and body language during the interviews, were noted. Interviews were conducted by a group of two researchers and two research assistants. Each interview was transcribed verbatim by researchers and analysed concurrently.

Data analysis

After the interview, the data were analysed separately and immediately by two researchers with skilled analysis experience. Interview data was analysed using Nvivo 12.0, a computer-assisted qualitative data management software. Colaizzi’s phenomenological seven-step method [ 10 ] (Table  2 ) was used for data analysis to complete the extraction of themes and sub-themes regarding the early career resilience experience of NQNs in emergency department. Any disagreement between researchers was resolved by making decisions through discussion until a consensus was reached. The resulting theme structure was returned to the participants, who were asked over the phone whether their real experience had been captured, and if there was any deviation, researchers woule re-analyzed it from the first step.

Four criteria were applied to ensure research rigor: credibility, dependability, confirmability, and transferability. Credibility was ensured through researcher triangulation, data collection triangulation, and participant validation. Dependability was ensured by providing the data to an experienced external researcher for an independent check. In order to ensure confirmability, an audit trail was used to verify that the authors did not bias the findings. Transferability was ensured by clearly describing the background of the study, the sampling method, and the method of data collection and analysis. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) [ 11 ].

A total of 18 participants (2 males and 16 females) were included in the study. Their average age was 23.1 years. There were 1 participant with diplomas (5.6%) and 17 with bachelor’s degrees (94.4%). The study applied Colaizzi’s method to extract themes to describe the early career resilience experience of Gen Z NGRNs in standardized training in the emergency department. Three themes were emerged: (a) pressure and challenge, (b) coping and adaptation, and (c) reflection and planning. The three themes and ten subthemes are shown in Fig.  2 .

Themes and sub-themes categorized from data

Theme 1: pressure and challenge

High workload and high risk coexist.

The high work intensity and high risk of the emergency department have never been experienced by the NGRNs of Gen Z. The university clinical practicum of this generation of NGRNs has been affected by the COVID-19 pandemic, and inadequate clinical practicum experience makes them face great work pressure in the early stage of entering the emergency department. Participant 11 described her inability to adapt to emergency department work:

“Have not seen such critical patients! In the ward rotation, there are stable patients, and the disease is relatively single. I did not go to the emergency department in my internal program and many instruments have not seen, I didn’t get used to it all at once (frown).”

Participant 10 described the stress caused by her busy work experience:

“There are many, many treatments every day, sometimes three ambulances come together, all very serious patients, and we may be busy intubating someone, really busy (smile and shake head).”

Participants 8 considered the writing of patient rating sheets and nursing record sheets to be a high workload in emergency department:

“Every day to record a variety of patient scores, such as RASS score, APACHE II score, stress injury score, Barthel score, muscle strength score, ha ha, can not say it in one breath… And of course, the nursing notes. I couldn’t stop (smile).

Due to the critical condition of the patients, the nursing work of emergency department has great risk, for NGRNs, any carelessness may cause adverse consequences. Participants 3 and Participants 16 shared their insights:

“I am often afraid of making mistakes. Patients have several catheters, I feel I can’t start, and the dosage of some drugs is not easy to adjust the speed.” “I am afraid when I perform gastric lavage operation on the patient, what should I do if perforate?”

Death’s stress response

Gen Z NGRNs are younger and less experienced, and their experience in the emergency department may be their first time facing the death of a patient, which causes a strong stress response that most participants can’t handle. Participant 6 described:

“At the beginning of the emergency department, I was shocked (wide eyes), how so many critical patients! One day when I saw a 3-year-old child die of suffocation, I was really sad that I could not eat. When I left work, my mind was full of first aid for the child (shake head and puck mouth).”

Participant 9 described her distress to cope with the death of a peer:

“There was a man only a few years older than me who committed suicide, and I’m sorry we couldn’t save him, and I keep thinking, what did he go through to get him to this point of no return?”

More emergencies

Emergency nursing work is full of unpredictability. Emergencies happen all the time. Gen Z NGRNs have not yet reached the capacity to be able to cope with these events and therefore feel stressed. For example, patient’s condition suddenly worsens, Participant 4 described:

“There was a middle shift, met a tetanus patient suddenly tetanus attack, I have never encountered this situation, panic helpless, especially frustrated.”

Participants felt anxious about patients with serious medical conditions entering the emergency department, Participant 4 and Participant 18 described:

“There was a sudden batch of car accident patients, with hemopneumothorax, fractures, multiple injuries, it’s too busy.” “I am most afraid of treating patients with sudden acute respiratory failure…” .

High professional requirements

Most of the participants said that the emergency nursing profession has high technical requirements, and the Gen Z nurses who were in the standardized training at the early stage of their career still need to improve their self-requirements in terms of professional ability, and there is a long way to go. Participant 1 described the challenges she faced:

“Mechanical ventilation patients are very common here, airway management, air bag pressure testing and so on are important knowledge, I have only learned the surface.”

Learning new skills that had not been touched, Participants 17 described:

“For the first time I knew what IO (Intraosseous infusion) was, and there was a lot to learn.”

Participant 5 described the challenges involved in the rescue process:

“Getting D2W time (the time from arrival at the hospital gate to the first balloon dilation) for STEMI patients is really intense and exciting. In addition to knowing the process of opening emergency green channel, we also have to understand the relevant drug administration, there is too much to learn!”

Theme 2: coping and adaptation

Team support is seen as a social resource and plays a role in helping Gen Z NGRNs build and develop resilience. The preceptors in the standardized training played an important role in the development of NGRNs, and all participants felt that they received help from the preceptors. Participant 7 and Participant 4 described:

“My preceptor is really good, she is very strong, all the rescue is so in one go, feel no extra action, I feel great! She would take the initiative to teach me, such as the principles of ECMO, how to cooperate with the team and so on.”

The mutual help of team members is effective for improving individual’s organizational commitment and organizational citizenship behavior to the team. Below are description of Participant 11 of how supportive their colleagues were:

“My colleagues are also very nice, they ask me where I need help, they tell me that nothing is a problem, as long as we work together, there is no problem that can’t be solved!”

Psychological restructuring

A technique psychologists call cognitive restructuring (CR) is one of the most effective ways for people to adapt to pressure, this approach is also known as cognitive reframing or cognitive reappraisal. CR can enable people to turn an experience into a challenge and further turn it into something good for them. Participant 15 shared her experience of restructuring:

“Take things too hard or blind, in addition to let me go further and further on the road of decadence, can not bring a ray of life to me.”

Downward comparison principles in social psychology posits that persons experiencing negative affect can enhance their subjective well-being through comparison with a less fortunate other. Such a change of mind can also be seen as a psychological restructuring. Participant 6 described:

“Seeing so many deaths in the emergency department, I don’t think the difficulties I face are very important.”

Peer support

Participants said that similar experiences with peers made them empathize and feel more connected, peer support had a significant effect on resilience, and the participants described the experience in which they were supported and became confident. Participant 6 described:

“We talk to each other, found that there is a problem or pressure is not only me, towards the peer, feel that all things are difficult before they are easy, adapt to it.”

Gen Z is passionate about using online resources and trying new things. Participant 1 and Participant 7 described the way she and her companions relaxed:

“Our standardized training group members will team up to play esports games, relax! (Laughter)” . “My partner taught me to meditate, to look at my emotions without any critical eyes.”

Transformational leadership

Transformational leadership is an effective style of leadership in health care organizations. Most participants cited transformational leadership from their leaders as an important pillar of their resilience development. Participant 5 described:

“The head nurse gave me some small tasks, such as authorizing me to prepare knowledge links in the PPT of our department’s nursing rounds. I imported them in the form of video cases and was praised. I felt useful (smile).”

Psychological contract is an unwritten implicit contract that pays more attention to commitment and reciprocal relationship. With the development of the times and society, Gen Z employees pay more attention to psychological contract. When the organization arouses employees’ sense of happiness, belonging and identity through a solid psychological contract, employees will generate more positive behaviors in return for the organization. Participant 16 was very appreciative of the leadership in the organization, stating:

“The team atmosphere in the emergency department is very good, and the whole team is full of cohesion. The head nurse asked me about my difficulties and needs from time to time, which made me feel very valued. I hope that I can stay and work here after the standardized training (hands praying).”

Theme 3: reflection and planning

Enhance learning.

Taking an active approach to stress helped the Gen Z NGRNs to develop resilience. All the participants agree that it is very important to strengthen learning and improve their own quality and ability. Participants 13 felt that he had improved himself by learning new skills:

“I followed the teacher to shoot a popular science video about anaphylactic shock, and I was responsible for the video technology processing. I learned a lot and found my own advantages. Looking back, those so-called difficulties were actually nothing.”

Participant 6 expressed their desire to improve their abilities through setting plans.

“I made an action plan, wrote down what I should do at every node of time, and worked hard to improve my professional ability. Only when I was strong, my work efficiency would improve.”

Appreciate life

Resilience emphasizes the growth and rebirth of individuals after trauma or stress. Highly resilient individuals are often able to overcome their emotional icebergs, appreciate life, and move forward from adversity. Participant 18 described her view on adversity at work:

“The rough past is just a reminder of life. It can teach us how to be a better version of ourselves in the future.”

Participant 9 described her gratitude for this early work experience:

“I am very grateful for my current job, although there are many difficulties at the beginning, but it has honed my will and harvested a lot of good things, I am grateful for everything I have now.”

Gen Z NGRNs are accustomed to using online social platforms to record and share their lives. Here are the descriptions of the Participant 14 and Participant 16:

“Stay positive, and I will keep track of every little progress, every little success I have on my social media.” “I made a Vlog of standardized training work in the emergency department. The initial difficult time encouraged me to cherish the present and work hard.”

The study extracted 3 themes to describe the early career resilience experience and process of Gen Z NGRNs in standardized training in the emergency department, provide a new perspective and theoretical basis for psychological rehabilitation or intervention of medical staff who experienced transition shock. Gen Z NGRNs in standardized training faced a great deal of physical and emotional stress at the beginning of their clinical work, which was the norm rather than the exception. These sources of stress come from the lack of professional ability, special job requirements, and work or social environment. Gen Z NGRNs find reasonable ways to cope with stress and achieve self-improvement at the beginning of their careers. They receive training to improve clinical competence, while external support from leaders, teams and peers also plays a vital role. These constitute their early career resilience experience in the emergency department. This study explored the experience and process of Gen Z NGRNs’ resilience, providing a new perspective and theoretical basis for the psychological rehabilitation or intervention of new medical staff also in transition. The following is the specific discussion based on the study findings.

Stress among nursing staff is a global problem, especially among less qualified nurses, who are often identified as a highly stressed group with high turnover rates. A survey of 246 nurses (mostly Gen Z) in standardized training in China showed that the career transition stress (74.28 ± 12.58) and occupational stress (384.56 ± 81.26) of nurses were at a high level [ 12 ]. In addition, researchers believe that negative emotions such as anxiety, irritability, and emotional vulnerability are common among NGRNs, which has similarities with our findings [ 13 ]. The high stress state reduce the professional experience of NGRNs, such as the huge workload of the emergency department, high exposure risk, death’s stress response, emergencies, etc. The persistence of such a situation poses a threat to patient safety and quality of care, are not conducive to nurse retention, and the social recognition of the profession will also decline, forming a vicious circle. Therefore, in hospital management and education, it is necessary to provide strategies to reduce staff pressure and have a long-term effect.

For Gen Z NGRNs, resilience is activated and manifested under multiple stress stimuli, and is continuously enhanced with the increase of stress level, and finally achieves the target behavior of improving their professional ability and nursing quality. The International Council of Nurses (ICN) further points out that improving resilience can not only promote the physical and mental health of nurses, but also benefit the health and safety of patients and the stable development of health care organizations [ 14 ]. Resilience is a continuous, dynamic, multi-dimensional, learned ability, which is the result of internal and external factors. The outcome of resilience after an individual suffers trauma, pressure or challenge depends on the environment, the internal resilience factors and the interaction process between the individual and the environment [ 15 ]. Gen Z is a generation with an active mind and good use of resources, whether it is from the Internet social media, or offline learning communication and entertainment activities, they often find a way to suit themselves. So they are more able to motivate themselves and gain resilience experiences to support their growth.

Team support is seen as a social resource and plays a role in helping Gen Z NGRNs build and develop resilience. As most Gen Z are only children, the academic pressure and lack of companionship in the growing process have limited their contact with the outside world, which has prompted Generation Z to have strong social and emotional needs, constantly searching for a common language to maintain friendship and find their own circle [ 16 ]. The gradually formed peer support helps NGRNs integrate into the organization and increase their work commitment and sense of belonging to the organization. In order to alleviate the transition shock of Gen Z NGRNs, putting the individual needs of NGRNs in the first place is a key point of the teaching of standardized training. For example, nursing preceptors should pay more attention to patient safety related training, emergency response ability training, first-aid skills training and other urgently needed contents of nurses to improve NGRNs’ competency. ADDIE model instructional design refers to a systematic approach to developing teaching, including the entire process of Analysis, Design, Development, Implementation, and Evaluation. The method of this system includes several elements: what should be learned? (Setting learning goals); How to learn? (Application of learning strategies); and how to determine that learners have achieved learning outcomes? (Implementation of learning assessment). The curriculum design of standardized training for NGRNs can be based on the ADDIE model (Fig.  3 ). Nursing educators should analyze existing resources and implement strategies progressively and directionally. Attention should also be paid to the internal understanding and feedback of Gen Z NGRNS on their own roles and practical abilities [ 16 ].

ADDIE training course development model

Cognitive restructuring is one of the most effective ways for people to adapt to pressure. According to the participants’ description, CR is the re-cognition and transformation of the meaning of negative events in personal, life and work environment in the process of role change under the individual’s subjective will. This is one of the most effective ways to regulate emotions because it enables individuals to take steps to avoid unhelpful emotions or to adjust them after they have already formed, thereby stimulating individual resilience. Gen Z has a distinct personality, expects to achieve self-worth in the work, acquire positive behaviors, and gain the sense of belonging and identity in the work. It is suggested that psychological education should be carried out in the training of NGRNs, and psychological skills should be developed, such as self-suggestion, rumination and downward comparison.

Transformational leadership emphasizes the behavioral style of nursing leaders and the subjective feelings of nurses, and the emotional management of leadership is a favorable means. Studies have shown that resilience levels can be improved by means of emotion management [ 17 ]. At the beginning of their careers, Gen Z NGRNs have a strong need to break away from maladaptive situations. Nursing leaders should pay more attention to the psychological state of NGRNs in daily work, take timely measures to remove their bad emotion, and actively communicate with them. Such leadership also includes listening to the demands of employees, encouraging them to express their emotions, dealing with their concerns and opinions in a timely manner, avoiding negative psychological conditions caused by overwork or unfair treatment, and developing reasonable work systems and scientific work processes according to the workload and personnel allocation ratio. Such intervention makes Gen Z NGRNs get great psychological support. The transformational leadership style based on NGRNs’ adaptation to needs helps build NGRNs’ resilience.

With the development of modern nursing discipline, the ability of qualified clinical nurses is increasingly required. Gen Z with independent personality is more proactive in learning. They are good at planning and have clear goals and actions for their pursuit [ 18 ]. At the same time, they have much richer network resources, which is different from the past. For example, they are better at using the Internet to gather information, take courses or share communication to decompress. Gen Z has a more optimistic attitude towards life, which is related to their successful life experiences and education. They want to do most things in their own way and at their own pace, choose to be positive, and appreciate life rather than complain, which is a sign of self-confidence. It plays a promoting role in the cultivation of resilience.

Studies have found that there is a significant internal relationship between nurses’ turnover intention and individual resilience [ 19 ]. Nursing educators should consider how to implement external strategies to help NGRNs survive the transition shock at the beginning of their careers and improve their resilience, which is related to the construction of nursing teams and the quality of clinical nursing. Various forms of education and ability training are encouraged, for example, by targeting Gen Z NGRNs’ strengths and weaknesses in standardized training, adding mindfulness workshops, death education, peer counseling, role model education, and other methods could be used to train NGRNs to better cope with negative events. Ongoing education and guidance can protect traumatized nurses from absorbing or internalizing unmanageable emotions, which may lead to compassion fatigue. This can help them cope with events more calmly, develop resilience, and boost their careers. Team resilience is a protective factor for individual resilience, manifested as the collective psychological state of team members’ shared cognition, motivation, or emotions [ 20 ]. When team adversity is perceived, team members invoke their positive psychological resources and extend individual resilience to the team level through interpersonal interactions [ 21 ]. Measures to improve team resilience, including simulation education and team management of clinical aggression training, multimodal resilience training program, stress management and resilience training, and so forth, are effective in promoting individual resilience. Most critically, medical institutions should pay attention to the mental health of medical personnel as a key link, establish a special mental health support organization for medical personnel, and provide long-term and effective support and protection for employees.

This study described the embodiment and coping experience of the physical and mental stress faced by Gen Z NGRNs during their standardized training in the emergency department. It highlight the role of individuals, organizations and social relationships in the development of resilience. It is emphasized that nurse educators should pay attention to the character and actual needs of Gen Z NGRNs, and explore and formulate strategies from the past experience of standardized training practice, so as to guide NGRNs to quickly adapt and grow in the new role. The ultimate goal is to increase nurse retention and improve the quality of nursing. At the same time, our study provides a valuable basis for the future study of other medical staff’s resilience intervention.

Data availability

The original contributions presented in the study are included in the article, further inquiries can be directed to the corresponding authors.

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Acknowledgements

All the authors express their gratitude and respect to the participants of Shanghai Tenth People’s Hospital for taking time out of their busy schedules to support this study. Expressing gratitude for the support of the funding agencies: National Natural Science Foundation of China; Shanghai Medical Trade Union; Shanghai Hospital Development Center.

This work was supported by: (1) National Natural Science Foundation of China (72004162); (2) Shanghai Medical Trade Union Survey Research Key Project (2023YGL07); (3) Shanghai Hospital Development Center Foundation (SHDC12023637).

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Peng Han, Yingying Sun and Huifeng Chen contributed equally to this work.

Authors and Affiliations

Emergency Department, Shanghai Tenth People’s Hospital, School of Medicine, Tongji University, Shanghai, 200072, China

Peng Han, Yue Liu, Shuyang Liu, Jing Wang, Chunwei Chi & Jinxia Jiang

Human Resource Department, Shanghai Tenth People’s Hospital, School of Medicine, Tongji University, Shanghai, 200072, China

Yingying Sun

Department of medical affairs, Shanghai Stomatological Hospital & School of Stomatology, Fudan University, Shanghai, 200433, China

Huifeng Chen

Emergency department, Song Jiang District Central Hospital, Shanghai, 201699, China

Zhenjuan Dai

College of Design and Innovation, Tongji University, Shanghai, 200092, China

Nursing Department, Tongji Hospital, School of Medicine, Tongji University, Shanghai, 200065, China

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P.H. Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Project administration; Roles/Writing - original draft; Writing - review & editing. Y.S. Conceptualization; Data curation; Investigation; Methodology; Project administration; Roles/Writing - original draft. H.C. Resources; Software; Supervision; Validation; Visualization; Roles/Writing - original draft. Y.L. Roles/Writing - original draft; Methodology; Project administration. S.L. Roles/Writing - original draft; Methodology; Project administration. J.W. Methodology; Project administration; Resources; Software. C.C. Methodology; Project administration; Resources. Z.D. Conceptualization; Project administration; Roles/Writing - original draft; L.Z. Conceptualization; Funding acquisition. J.C. Conceptualization; Project administration; Funding acquisition; Roles/Writing - original draft. J.J. Conceptualization; Project administration; Funding acquisition; Roles/Writing - original draft. We claim that all authors have contributed to the manuscript. All contributions are properly acknowledged.

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Correspondence to Jing Chen , Li Zeng or Jinxia Jiang .

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Informed consent was obtained from all participants. The Institutional Review Board of Shanghai Tenth People’s Hospital (Shanghai, China) approved the study (Approval No. 23KN25). Each participant read the informed consent carefully and signed an Electronic Consent Statement prior to the start of the interview.

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Han, P., Sun, Y., Chen, H. et al. The early career resilience experience of generation Z newly graduated registered nurses in standardized training in the emergency department: a qualitative study in Shanghai. BMC Nurs 23 , 391 (2024). https://doi.org/10.1186/s12912-024-02043-3

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Qualitative Research: Getting Started

Introduction.

As scientifically trained clinicians, pharmacists may be more familiar and comfortable with the concept of quantitative rather than qualitative research. Quantitative research can be defined as “the means for testing objective theories by examining the relationship among variables which in turn can be measured so that numbered data can be analyzed using statistical procedures”. 1 Pharmacists may have used such methods to carry out audits or surveys within their own practice settings; if so, they may have had a sense of “something missing” from their data. What is missing from quantitative research methods is the voice of the participant. In a quantitative study, large amounts of data can be collected about the number of people who hold certain attitudes toward their health and health care, but what qualitative study tells us is why people have thoughts and feelings that might affect the way they respond to that care and how it is given (in this way, qualitative and quantitative data are frequently complementary). Possibly the most important point about qualitative research is that its practitioners do not seek to generalize their findings to a wider population. Rather, they attempt to find examples of behaviour, to clarify the thoughts and feelings of study participants, and to interpret participants’ experiences of the phenomena of interest, in order to find explanations for human behaviour in a given context.

WHAT IS QUALITATIVE RESEARCH?

Much of the work of clinicians (including pharmacists) takes place within a social, clinical, or interpersonal context where statistical procedures and numeric data may be insufficient to capture how patients and health care professionals feel about patients’ care. Qualitative research involves asking participants about their experiences of things that happen in their lives. It enables researchers to obtain insights into what it feels like to be another person and to understand the world as another experiences it.

Qualitative research was historically employed in fields such as sociology, history, and anthropology. 2 Miles and Huberman 2 said that qualitative data “are a source of well-grounded, rich descriptions and explanations of processes in identifiable local contexts. With qualitative data one can preserve chronological flow, see precisely which events lead to which consequences, and derive fruitful explanations.” Qualitative methods are concerned with how human behaviour can be explained, within the framework of the social structures in which that behaviour takes place. 3 So, in the context of health care, and hospital pharmacy in particular, researchers can, for example, explore how patients feel about their care, about their medicines, or indeed about “being a patient”.

THE IMPORTANCE OF METHODOLOGY

Smith 4 has described methodology as the “explanation of the approach, methods and procedures with some justification for their selection.” It is essential that researchers have robust theories that underpin the way they conduct their research—this is called “methodology”. It is also important for researchers to have a thorough understanding of various methodologies, to ensure alignment between their own positionality (i.e., bias or stance), research questions, and objectives. Clinicians may express reservations about the value or impact of qualitative research, given their perceptions that it is inherently subjective or biased, that it does not seek to be reproducible across different contexts, and that it does not produce generalizable findings. Other clinicians may express nervousness or hesitation about using qualitative methods, claiming that their previous “scientific” training and experience have not prepared them for the ambiguity and interpretative nature of qualitative data analysis. In both cases, these clinicians are depriving themselves of opportunities to understand complex or ambiguous situations, phenomena, or processes in a different way.

Qualitative researchers generally begin their work by recognizing that the position (or world view) of the researcher exerts an enormous influence on the entire research enterprise. Whether explicitly understood and acknowledged or not, this world view shapes the way in which research questions are raised and framed, methods selected, data collected and analyzed, and results reported. 5 A broad range of different methods and methodologies are available within the qualitative tradition, and no single review paper can adequately capture the depth and nuance of these diverse options. Here, given space constraints, we highlight certain options for illustrative purposes only, emphasizing that they are only a sample of what may be available to you as a prospective qualitative researcher. We encourage you to continue your own study of this area to identify methods and methodologies suitable to your questions and needs, beyond those highlighted here.

The following are some of the methodologies commonly used in qualitative research:

• Ethnography generally involves researchers directly observing participants in their natural environments over time. A key feature of ethnography is the fact that natural settings, unadapted for the researchers’ interests, are used. In ethnography, the natural setting or environment is as important as the participants, and such methods have the advantage of explicitly acknowledging that, in the real world, environmental constraints and context influence behaviours and outcomes. 6 An example of ethnographic research in pharmacy might involve observations to determine how pharmacists integrate into family health teams. Such a study would also include collection of documents about participants’ lives from the participants themselves and field notes from the researcher. 7
• Grounded theory, first described by Glaser and Strauss in 1967, 8 is a framework for qualitative research that suggests that theory must derive from data, unlike other forms of research, which suggest that data should be used to test theory. Grounded theory may be particularly valuable when little or nothing is known or understood about a problem, situation, or context, and any attempt to start with a hypothesis or theory would be conjecture at best. 9 An example of the use of grounded theory in hospital pharmacy might be to determine potential roles for pharmacists in a new or underserviced clinical area. As with other qualitative methodologies, grounded theory provides researchers with a process that can be followed to facilitate the conduct of such research. As an example, Thurston and others 10 used constructivist grounded theory to explore the availability of arthritis care among indigenous people of Canada and were able to identify a number of influences on health care for this population.
• Phenomenology attempts to understand problems, ideas, and situations from the perspective of common understanding and experience rather than differences. 10 Phenomenology is about understanding how human beings experience their world. It gives researchers a powerful tool with which to understand subjective experience. In other words, 2 people may have the same diagnosis, with the same treatment prescribed, but the ways in which they experience that diagnosis and treatment will be different, even though they may have some experiences in common. Phenomenology helps researchers to explore those experiences, thoughts, and feelings and helps to elicit the meaning underlying how people behave. As an example, Hancock and others 11 used a phenomenological approach to explore health care professionals’ views of the diagnosis and management of heart failure since publication of an earlier study in 2003. Their findings revealed that barriers to effective treatment for heart failure had not changed in 10 years and provided a new understanding of why this was the case.

ROLE OF THE RESEARCHER

For any researcher, the starting point for research must be articulation of his or her research world view. This core feature of qualitative work is increasingly seen in quantitative research too: the explicit acknowledgement of one’s position, biases, and assumptions, so that readers can better understand the particular researcher. Reflexivity describes the processes whereby the act of engaging in research actually affects the process being studied, calling into question the notion of “detached objectivity”. Here, the researcher’s own subjectivity is as critical to the research process and output as any other variable. Applications of reflexivity may include participant-observer research, where the researcher is actually one of the participants in the process or situation being researched and must then examine it from these divergent perspectives. 12 Some researchers believe that objectivity is a myth and that attempts at impartiality will fail because human beings who happen to be researchers cannot isolate their own backgrounds and interests from the conduct of a study. 5 Rather than aspire to an unachievable goal of “objectivity”, it is better to simply be honest and transparent about one’s own subjectivities, allowing readers to draw their own conclusions about the interpretations that are presented through the research itself. For new (and experienced) qualitative researchers, an important first step is to step back and articulate your own underlying biases and assumptions. The following questions can help to begin this reflection process:

• Why am I interested in this topic? To answer this question, try to identify what is driving your enthusiasm, energy, and interest in researching this subject.
• What do I really think the answer is? Asking this question helps to identify any biases you may have through honest reflection on what you expect to find. You can then “bracket” those assumptions to enable the participants’ voices to be heard.
• What am I getting out of this? In many cases, pressures to publish or “do” research make research nothing more than an employment requirement. How does this affect your interest in the question or its outcomes, or the depth to which you are willing to go to find information?
• What do others in my professional community think of this work—and of me? As a researcher, you will not be operating in a vacuum; you will be part of a complex social and interpersonal world. These external influences will shape your views and expectations of yourself and your work. Acknowledging this influence and its potential effects on personal behaviour will facilitate greater self-scrutiny throughout the research process.

FROM FRAMEWORKS TO METHODS

Qualitative research methodology is not a single method, but instead offers a variety of different choices to researchers, according to specific parameters of topic, research question, participants, and settings. The method is the way you carry out your research within the paradigm of quantitative or qualitative research.

Qualitative research is concerned with participants’ own experiences of a life event, and the aim is to interpret what participants have said in order to explain why they have said it. Thus, methods should be chosen that enable participants to express themselves openly and without constraint. The framework selected by the researcher to conduct the research may direct the project toward specific methods. From among the numerous methods used by qualitative researchers, we outline below the three most frequently encountered.

DATA COLLECTION

Patton 12 has described an interview as “open-ended questions and probes yielding in-depth responses about people’s experiences, perceptions, opinions, feelings, and knowledge. Data consists of verbatim quotations and sufficient content/context to be interpretable”. Researchers may use a structured or unstructured interview approach. Structured interviews rely upon a predetermined list of questions framed algorithmically to guide the interviewer. This approach resists improvisation and following up on hunches, but has the advantage of facilitating consistency between participants. In contrast, unstructured or semistructured interviews may begin with some defined questions, but the interviewer has considerable latitude to adapt questions to the specific direction of responses, in an effort to allow for more intuitive and natural conversations between researchers and participants. Generally, you should continue to interview additional participants until you have saturated your field of interest, i.e., until you are not hearing anything new. The number of participants is therefore dependent on the richness of the data, though Miles and Huberman 2 suggested that more than 15 cases can make analysis complicated and “unwieldy”.

Focus Groups

Patton 12 has described the focus group as a primary means of collecting qualitative data. In essence, focus groups are unstructured interviews with multiple participants, which allow participants and a facilitator to interact freely with one another and to build on ideas and conversation. This method allows for the collection of group-generated data, which can be a challenging experience.

Observations

Patton 12 described observation as a useful tool in both quantitative and qualitative research: “[it involves] descriptions of activities, behaviours, actions, conversations, interpersonal interactions, organization or community processes or any other aspect of observable human experience”. Observation is critical in both interviews and focus groups, as nonalignment between verbal and nonverbal data frequently can be the result of sarcasm, irony, or other conversational techniques that may be confusing or open to interpretation. Observation can also be used as a stand-alone tool for exploring participants’ experiences, whether or not the researcher is a participant in the process.

Selecting the most appropriate and practical method is an important decision and must be taken carefully. Those unfamiliar with qualitative research may assume that “anyone” can interview, observe, or facilitate a focus group; however, it is important to recognize that the quality of data collected through qualitative methods is a direct reflection of the skills and competencies of the researcher. 13 The hardest thing to do during an interview is to sit back and listen to participants. They should be doing most of the talking—it is their perception of their own life-world that the researcher is trying to understand. Sophisticated interpersonal skills are required, in particular the ability to accurately interpret and respond to the nuanced behaviour of participants in various settings. More information about the collection of qualitative data may be found in the “Further Reading” section of this paper.

It is essential that data gathered during interviews, focus groups, and observation sessions are stored in a retrievable format. The most accurate way to do this is by audio-recording (with the participants’ permission). Video-recording may be a useful tool for focus groups, because the body language of group members and how they interact can be missed with audio-recording alone. Recordings should be transcribed verbatim and checked for accuracy against the audio- or video-recording, and all personally identifiable information should be removed from the transcript. You are then ready to start your analysis.

DATA ANALYSIS

Regardless of the research method used, the researcher must try to analyze or make sense of the participants’ narratives. This analysis can be done by coding sections of text, by writing down your thoughts in the margins of transcripts, or by making separate notes about the data collection. Coding is the process by which raw data (e.g., transcripts from interviews and focus groups or field notes from observations) are gradually converted into usable data through the identification of themes, concepts, or ideas that have some connection with each other. It may be that certain words or phrases are used by different participants, and these can be drawn together to allow the researcher an opportunity to focus findings in a more meaningful manner. The researcher will then give the words, phrases, or pieces of text meaningful names that exemplify what the participants are saying. This process is referred to as “theming”. Generating themes in an orderly fashion out of the chaos of transcripts or field notes can be a daunting task, particularly since it may involve many pages of raw data. Fortunately, sophisticated software programs such as NVivo (QSR International Pty Ltd) now exist to support researchers in converting data into themes; familiarization with such software supports is of considerable benefit to researchers and is strongly recommended. Manual coding is possible with small and straightforward data sets, but the management of qualitative data is a complexity unto itself, one that is best addressed through technological and software support.

There is both an art and a science to coding, and the second checking of themes from data is well advised (where feasible) to enhance the face validity of the work and to demonstrate reliability. Further reliability-enhancing mechanisms include “member checking”, where participants are given an opportunity to actually learn about and respond to the researchers’ preliminary analysis and coding of data. Careful documentation of various iterations of “coding trees” is important. These structures allow readers to understand how and why raw data were converted into a theme and what rules the researcher is using to govern inclusion or exclusion of specific data within or from a theme. Coding trees may be produced iteratively: after each interview, the researcher may immediately code and categorize data into themes to facilitate subsequent interviews and allow for probing with subsequent participants as necessary. At the end of the theming process, you will be in a position to tell the participants’ stories illustrated by quotations from your transcripts. For more information on different ways to manage qualitative data, see the “Further Reading” section at the end of this paper.

ETHICAL ISSUES

In most circumstances, qualitative research involves human beings or the things that human beings produce (documents, notes, etc.). As a result, it is essential that such research be undertaken in a manner that places the safety, security, and needs of participants at the forefront. Although interviews, focus groups, and questionnaires may seem innocuous and “less dangerous” than taking blood samples, it is important to recognize that the way participants are represented in research can be significantly damaging. Try to put yourself in the shoes of the potential participants when designing your research and ask yourself these questions:

• Are the requests you are making of potential participants reasonable?
• Are you putting them at unnecessary risk or inconvenience?
• Have you identified and addressed the specific needs of particular groups?

Where possible, attempting anonymization of data is strongly recommended, bearing in mind that true anonymization may be difficult, as participants can sometimes be recognized from their stories. Balancing the responsibility to report findings accurately and honestly with the potential harm to the participants involved can be challenging. Advice on the ethical considerations of research is generally available from research ethics boards and should be actively sought in these challenging situations.

GETTING STARTED

Pharmacists may be hesitant to embark on research involving qualitative methods because of a perceived lack of skills or confidence. Overcoming this barrier is the most important first step, as pharmacists can benefit from inclusion of qualitative methods in their research repertoire. Partnering with others who are more experienced and who can provide mentorship can be a valuable strategy. Reading reports of research studies that have utilized qualitative methods can provide insights and ideas for personal use; such papers are routinely included in traditional databases accessed by pharmacists. Engaging in dialogue with members of a research ethics board who have qualitative expertise can also provide useful assistance, as well as saving time during the ethics review process itself. The references at the end of this paper may provide some additional support to allow you to begin incorporating qualitative methods into your research.

CONCLUSIONS

Qualitative research offers unique opportunities for understanding complex, nuanced situations where interpersonal ambiguity and multiple interpretations exist. Qualitative research may not provide definitive answers to such complex questions, but it can yield a better understanding and a springboard for further focused work. There are multiple frameworks, methods, and considerations involved in shaping effective qualitative research. In most cases, these begin with self-reflection and articulation of positionality by the researcher. For some, qualitative research may appear commonsensical and easy; for others, it may appear daunting, given its high reliance on direct participant– researcher interactions. For yet others, qualitative research may appear subjective, unscientific, and consequently unreliable. All these perspectives reflect a lack of understanding of how effective qualitative research actually occurs. When undertaken in a rigorous manner, qualitative research provides unique opportunities for expanding our understanding of the social and clinical world that we inhabit.

Further Reading

• Breakwell GM, Hammond S, Fife-Schaw C, editors. Research methods in psychology. Thousand Oaks (CA): Sage Publications Ltd; 1995. [ Google Scholar ]
• Strauss A, Corbin J. Basics of qualitative research. Thousand Oaks (CA): Sage Publications Ltd; 1998. [ Google Scholar ]
• Willig C. Introducing qualitative research in psychology. Buckingham (UK): Open University Press; 2001. [ Google Scholar ]
• Guest G, Namey EE, Mitchel ML. Collecting qualitative data: a field manual for applied research. Thousand Oaks (CA): Sage Publications Ltd; 2013. [ Google Scholar ]
• Ogden R. Bias. In: Given LM, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks (CA): Sage Publications Inc; 2008. pp. 61–2. [ Google Scholar ]

This article is the seventh in the CJHP Research Primer Series, an initiative of the CJHP Editorial Board and the CSHP Research Committee. The planned 2-year series is intended to appeal to relatively inexperienced researchers, with the goal of building research capacity among practising pharmacists. The articles, presenting simple but rigorous guidance to encourage and support novice researchers, are being solicited from authors with appropriate expertise.

Previous article in this series:

Bond CM. The research jigsaw: how to get started. Can J Hosp Pharm . 2014;67(1):28–30.

Tully MP. Research: articulating questions, generating hypotheses, and choosing study designs. Can J Hosp Pharm . 2014;67(1):31–4.

Loewen P. Ethical issues in pharmacy practice research: an introductory guide. Can J Hosp Pharm. 2014;67(2):133–7.

Tsuyuki RT. Designing pharmacy practice research trials. Can J Hosp Pharm . 2014;67(3):226–9.

Bresee LC. An introduction to developing surveys for pharmacy practice research. Can J Hosp Pharm . 2014;67(4):286–91.

Gamble JM. An introduction to the fundamentals of cohort and case–control studies. Can J Hosp Pharm . 2014;67(5):366–72.

Competing interests: None declared.

• Open access
• Published: 29 May 2024

Exploring the use of body worn cameras in acute mental health wards: a mixed-method evaluation of a pilot intervention

• Una Foye 1 , 2 ,
• Keiran Wilson 1 , 2 ,
• Jessica Jepps 1 , 2 ,
• James Blease 1 ,
• Ellen Thomas 3 ,
• Leroy McAnuff 3 ,
• Sharon McKenzie 3 ,
• Katherine Barrett 3 ,
• Lilli Underwood 3 ,
• Geoff Brennan 1 , 2 &
• Alan Simpson 1 , 2  

BMC Health Services Research volume  24 , Article number:  681 ( 2024 ) Cite this article

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Body worn cameras (BWC) are mobile audio and video capture devices that can be secured to clothing allowing the wearer to record some of what they see and hear. This technology is being introduced in a range of healthcare settings as part of larger violence reduction strategies aimed at reducing incidents of aggression and violence on inpatient wards, however limited evidence exists to understand if this technology achieves such goals.

This study aimed to evaluate the implementation of BWCs on two inpatient mental health wards, including the impact on incidents, the acceptability to staff and patients, the sustainability of the resource use and ability to manage the use of BWCs on these wards.

The study used a mixed-methods design comparing quantitative measures including ward activity and routinely collected incident data at three time-points before during and after the pilot implementation of BWCs on one acute ward and one psychiatric intensive care unit, alongside pre and post pilot qualitative interviews with patients and staff, analysed using a framework based on the Consolidated Framework for Implementation Research.

Results showed no clear relationship between the use of BWCs and rates or severity of incidents on either ward, with limited impact of using BWCs on levels of incidents. Qualitative findings noted mixed perceptions about the use of BWCs and highlighted the complexity of implementing such technology as a violence reduction method within a busy healthcare setting Furthermore, the qualitative data collected during this pilot period highlighted the potential systemic and contextual factors such as low staffing that may impact on the incident data presented.

This study sheds light on the complexities of using such BWCs as a tool for ‘maximising safety’ on mental health settings. The findings suggest that BWCs have a limited impact on levels of incidents on wards, something that is likely to be largely influenced by the process of implementation as well as a range of contextual factors. As a result, it is likely that while BWCs may see successes in one hospital site this is not guaranteed for another site as such factors will have a considerable impact on efficacy, acceptability, and feasibility.

Peer Review reports

Body worn cameras (BWC) are mobile audio and video capture devices that can be secured to clothing allowing the wearer to record some of what they see and hear. In England, these have been introduced in the National Health Service (NHS) as part of a violence reduction strategy [ 1 ] which emphasises the reduction of aggression and violence against staff. The NHS Staff Survey 2022 found that 14.7% of NHS staff had experienced at least one incident of physical violence from patients, relatives or other members of the public in the previous 12 months. Violent attacks on staff were found to contribute to almost half of staff illness [ 2 ]. Levels of violence against staff working in mental health trusts remain much higher than other types of healthcare providers [ 3 ]. Numerous reports internationally highlight the increased risks faced by staff working in psychiatric care [ 4 ], though studies have reported that both ward staff and mental health patients experience violence and feeling unsafe on inpatient wards [ 5 , 6 ].

Body worn cameras have been in use for over a decade within law enforcement, where they hoped to provide transparency and accountability within use-of-force incidents and in the event of citizen complaints against police [ 7 ]. It was believed that video surveillance would help identify integral problems within the organisation, improve documentation of evidence, reduce use-of-force incidents, improve police-community relations, and provide training opportunities for officers [ 8 ]. However, a recent extensive international systematic review by Lum et al. [ 9 ], found that despite the successes noted in early evaluations, the way BWCs are currently used by police may not substantially affect most officer or citizen behaviours. Irrespective of these findings, other public services such as train operators have been implementing BWCs for security purposes, with reductions reported in the number of assaults on railway staff [ 10 ].

A recent systematic review of BWC use in public sector services established that there is a poor evidence base supporting the use of BWCs in the reduction of violence and aggression [ 11 ]. Yet, we are seeing a swift increase in the use of BWCs in mental health settings with that aim, with few studies conducted on the use of BWC technology in inpatient mental health wards, and even fewer studies exploring staff or patients’ views. Two evaluations conducted in England reported mixed results with both increases and decreases in violence and aggression found, and variation between types of wards. There is some suggestion of a reduction in more serious incidents and the use of restraint, but quality of evidence is low [ 12 , 13 ].

The use of BWCs in mental healthcare settings for safety and security remains a contentious topic due to the lack of evidence regarding the influence that such technology has on preventing violence and aggression and the complex philosophical and ethical issues raised, particularly where many patients may lack capacity and/or are detained under mental health legislation [ 14 ]. Additionally, there are concerns that BWCs may be used as a ‘quick fix’ for staff shortages rather than addressing the wider systemic and resourcing issues facing services [ 15 ]. With little independent evaluation of body-worn cameras in mental health settings, many of these concerns remain unanswered. There is also limited understanding of this technology from an implementation perspective. Therefore, in this study we aimed to conduct an independent evaluation of the introduction of BWCs as a violence reduction intervention on two inpatient mental health wards during a six-month pilot period to explore the impact of using the technology, alongside an exploration of the facilitators and barriers to implementation.

Research aim(s)

To evaluate the implementation of BWCs on two inpatient mental health wards, including the impact on incidents, the acceptability to staff and patients, the sustainability of the resource use and ability to manage the use of BWCs on these wards.

Patient and public involvement

The research team included a researcher and independent consultant, each with lived experience of mental health inpatient care. In addition, we recruited and facilitated a six member Lived Experience Advisory Panel (LEAP). This group was made up of patients and carers, some of whom had experienced the use of BWCs. Members were of diverse ethnic backgrounds and included four women and two men. The LEAP provided guidance and support for the research team in developing an understanding of the various potential impacts of the use of BWCs on inpatient mental health wards. Members contributed to the design of the study, development of the interview schedule, practice interviews prior to data collection on the wards, and supported the analysis and interpretation of the data, taking part in coding sessions to identify themes in the interview transcripts. The LEAP met once a month for two hours and was chaired by the Lived Experience Research Assistant and Lived Experience Consultant. Participants in the LEAP were provided with training and paid for their time.

The pilot introduction of the body worn cameras was conducted within a London mental health Trust consisting of four hospital sites with 17 acute wards. The research team were made aware of extensive preparatory work and planning that was conducted at a directorate and senior management level prior to camera implementation, including lived experience involvement and consultation, and the development of relevant policies and protocols inclusive of a human rights assessment and legal consultation.

The pilot period ran from 25th April to 25th October 2022. Reveal (a company who supply BWCs nationally across the UK) provided the Trust with 12 Calla BWCs for a flat fee that covered use of the cameras, cloud-based storage of footage, management software, and any support/maintenance required during the pilot period. Cameras were introduced to two wards based on two hospital sites, with six cameras provided to each of the wards on the same date. Training on using the BWCs was provided by the BWC company to staff working on both wards prior to starting the pilot period. Ward one was a 20-bed male acute inpatient ward, representing the most common ward setting where cameras have been introduced. Ward two was a ten-bed male Psychiatric Intensive Care Unit (PICU), representing smaller and more secure wards in which patients are likely to present as more unwell and where there are higher staff to patient ratios.

To answer our research questions, we used a mixed-methods design [ 16 ]. Using this design allowed us to investigate the impact of implementing BWCs in mental health settings on a range of quantitative and qualitative outcomes. This mixed methods design allows the study to statistically evaluate the effectiveness of using BWCs in these settings on key dependent variables (i.e., rates of violence and aggression, and incidents of conflict and containment) alongside qualitatively exploring the impact that the implementation of such technology has on patients and staff.

To ensure that the study was able to capture the impact and effect of implementation of the cameras, a repeated measures design was utilised to capture data at three phases on these wards:

Pre-pilot data: data prior of the implementation of the BWCs (quantitative and qualitative data).

Pilot period data: data collected during the six-month pilot period when BWCs were implemented on the wards (quantitative and qualitative data).

Post-pilot: data collected after the pilot period ended and cameras had been removed from the wards (quantitative data only).

Quantitative methods

Quantitative data was collected at all three data collection periods:

Pre-period: Data spanning six months prior to the implementation of BWCs (Nov 21 to May 22).

Pilot period: Data spanning the six months of the Trusts pilot period of using BWCs on the wards (June 22 to Nov 22).

Post-pilot: Data spanning the six months following the pilot period, when BWCs had been removed (Dec 22 to May 23).

Quantitative measures

To analyse the impact of BWC implementation, we collected two types of incident data related to violence and aggression and use of containment measures, including BWCs. Combined, these data provide a view of a wide range of incidents and events happening across the wards prior to, during, and after the implementation and removal of the BWCs.

The patient-staff conflict checklist

The Patient-staff Conflict Checklist (PCC-SR) [ 17 ] is an end of shift report that is completed by nurses to collate the frequency of conflict and containment events. This measure has been used successfully in several studies on inpatient wards [ 18 , 19 , 20 ].The checklist consists of 21 conflict behaviour items, including physical and verbal aggression, general rule breaking (e.g., smoking, refusing to attend to personal hygiene), eight containment measures (e.g., special observation, seclusion, physical restraint, time out), and staffing levels. In tests based on use with case note material, the PCC-SR has demonstrated an interrater reliability of 0.69 [ 21 ] and has shown a significant association with rates of officially reported incidents [ 22 ].

The checklist was revised for this study to include questions related to the use of BWCs ( e.g., how many uses of BWCs happened during the shift when a warning was given and the BWC was not used; when a warning was given and the BWC was used; when the BWC was switched on with no warning given ) in order to provide insight into how the cameras were being used on each ward (see appendix 1). Ward staff were asked to complete the checklist online at the end of each shift.

Routinely collected incident data (via datix system)

To supplement the PCC-SR-R, we also used routinely collected incident data from both wards for all three data collection phases. This data is gathered as part of routine practice by ward staff members via the Datix system Datix [ 23 ] is a risk management system used widely across mental health wards and Trusts in the UK to gather information on processes and errors. Previous studies have utilised routinely collect data via this system [ 24 , 25 ]. Incidents recorded in various Datix categories were included in this study (see Table  1 ). Incidents were anonymised before being provided to the research team to ensure confidentiality.

Routinely collected data included:

Recorded incidents of violence and aggression.

Recorded use of restrictive practices including seclusion, restraint, and intra-muscular medication/rapid tranquilisations.

Patient numbers.

Staffing levels.

Numbers of staff attending BWC training.

Quantitative data analysis

Incident reports.

Incident reports retrieved from Datix were binary coded into aggregate variables to examine violence and aggression, self-harm, and other conflict as outlined in Table  1 . Multivariate analyses of variance (MANOVA) were used to identify differences in type of incident (violence against person, violence against object, verbal aggression, self-harm, conflict) for each ward. MANOVA was also used to examine differences in incident outcomes (severity, use of restrictive practice, police involvement) across pre-trial, trial, and post-trial periods for each ward. Incident severity was scored by ward staff on a four-point scale (1 = No adverse outcome, 2 = Low severity, 3 = Moderate severity, 4 = Severe). Use of restrictive practice and police involvement were binary coded for presence or absence. Analyses were conducted using SPSS [ 26 ].

Patient-staff conflict checklist shift-report – revised (PCC-SR-R; )

Data were condensed into weeks for analysis rather than shifts to account for variability in PCC-SR-R submission by shift. Linear regressions assessed the relationship between BWC use and incident outcome (severity, use of restrictive practice, police involvement).

Qualitative methods

We used semi-structured qualitative interviews to explore participants’ experiences of BWCs on the ward to understand the impact of their use as well as to identify any salient issues for patients, staff and visitors that align with the measures utilised within the quantitative aspect of this study. These interviews were conducted at two time points: pre-pilot and at the end of the six-month pilot period.

Sample selection, eligibility, and recruitment

Convenience sampling was used to recruit staff and patients on wards. Researchers approached ward managers to distribute information sheets to staff, who shared that information with patients. Staff self-selected to participate in the study by liaising directly with the research team. Patients that were identified as close to discharge and having capacity to consent were approached by a clinical member of the team who was briefed on the study inclusion criteria (see Table  2 ). The staff member spoke with the patient about the study and provided them with a copy of the information sheet to consider. If patients consented, a member of the research team approached the participant to provide more information on the study and answer questions. After initial contact with the research team, participants were given a 24-hour period to consider whether they wanted to participate before being invited for an interview.

Participants were invited to take part in an interview within a private space on the ward. Interviews were scheduled for one hour with an additional 15 min before and after to obtain informed consent and answer any questions. Participation was voluntary and participants were free to withdraw at any time. To thank patients for their time, we offered a £10 voucher following the interview. Interviews were audio-recorded and saved to an encrypted server. Interview recordings were transcribed by an external company, and the research team checked the transcripts for accuracy and pseudonymised all participants. All transcripts were allocated a unique ID number and imported to MicroSoft Excel [ 27 ] for analysis.

Qualitative data analysis

Qualitative data were analysed using a framework analysis [ 28 ] informed by implementation science frameworks. Our coding framework used the Consolidated Framework for Implementation Research (CFIR) [ 29 ], which is comprised of five major domains including: Intervention Characteristics, Implementation Processes, Outer Setting, Inner Setting, and Characteristics of the Individual. Each domain consists of several constructs that reflect the evidence base of the types of factors that are most likely to influence implementation of interventions. The CFIR is frequently used to design and conduct implementation evaluations and is commonly used for complex health care delivery interventions to understand barriers and facilitators to implementation. Based on its description, the CFIR is an effective model to address our research question, particularly given the complexity of the implementation of surveillance technology such as BWCs in this acute care setting.

The initial analytic stage was undertaken by eight members of the study team with each researcher charting data summaries onto the framework for each of the interviews they had conducted on MicroSoft Excel [ 27 ]. Sub-themes within each broad deductive theme from our initial framework were then derived inductively through further coding and collaborative discussion within the research team, inclusive of Lived Experience Researcher colleagues. Pseudonyms were assigned to each participant during the anonymisation of transcripts along with key identifiers to provide context for illustrative quotes (e.g., P = patient, S = staff, A = acute ward, I = Intensive Care, Pre = pre-BWC implementation interview, Post = Post BWC implementation interview).

All participants gave their informed consent for inclusion before they participated in the study. The study was conducted in accordance with the Declaration of Helsinki, and the protocol was approved by the Health Research Authority: London - Camden & Kings Cross Research Ethics Committee (IRAS Project ID 322,268, REC Reference 23/LO/0337).

Quantitative results

Exploring how body worn cameras were used during the pilot period.

Analysis of the PCC-SR-R provides information about how the BWCs were used on a day-to-day basis during the pilot period. Out of 543 total shift reports completed, BWC use was reported 50 times, indicating that BWCs were used on less than 10% of shifts overall; 78% of those deployments were on the Acute ward (see Figure 1 ). Overall, the majority of deployments happened as activations without a warning being given ( n  = 30, 60% of activations), 19 times the BWC was deployed with a warning but the camera was not activated (38%), and only one was the camera activated without a warning being given (2%).

BWC use by ward per week of pilot (no data available before week 6 on Ward 1)

According to the PCC-SR-R, a total of 227 incidents of aggression occurred during the pilot period across both wards (see Table  3 ). Overall, there were small statistically significant correlations between BWC usage and certain types of conflict, aggression, and restrictive practice. Results found that BWC use was positively correlated with verbal aggression and use of physical restraint. BWC use was moderately positively correlated with verbal aggression ( r  = .37, p  < .001). This indicates that BWCs were more likely to be used in incidents involving verbal aggression, which do not tend to be documented in Datix. Similarly, BWC use was moderately positively correlated with physical restraint ( r  = .31, p  < .001) indicating that they were also more likely to be used alongside physical restraint.

Exploring the impact of BWCs utilising routinely collected ward data

Acute ward results.

Routine data collected via Datix records were used to examine differences in frequency of conflict and aggression, incident severity, and use of containment measures before, during, and after introduction of BWCs on each trial ward (see Table  4 ).

There was no effect of trial period on incident type ( F (10, 592) = 1.703, p  = .077, Wilk’s Λ = 0.945), meaning there was no discernible difference in the type of incidents that occurred (E.g., verbal aggression, physical aggression) before, during, and after the pilot phase.

Incident outcomes

There was an effect of trial period on incident outcomes ( F (6, 596) = 10.900, p  < .001, Wilk’s Λ = 0.812). Incident severity was statistically significantly higher in the trial and post-trial periods compared to the pre-trial period. Use of restrictive practice was significantly lower in the post-trial period compared to the pre-trial and trial period. Police involvement was also lower in the post-trial period compared to the pre-trial and trial periods (see Table  5 ).

Results for the psychiatric intensive care unit

There was an effect of trial period on incident type ( F (10, 490) = 4.252, p  < .001, Wilk’s Λ = 0.847). Verbal aggression was statistically significantly higher in the post-trial period compared to the pre and trial periods. Self-harm was statistically significantly higher in the trial period compared to the pre-trial and post-trial periods. There were no differences in violence against a person ( p  = .162), violence against an object or conflict behaviour (see Table  4 ).

There was a statistically significant difference in incident outcome across the trial periods ( F (6, 494) = 12.907, p  < .001, Wilk’s Λ = 0.747). There was no difference in incident severity or police involvement. However, use of restrictive practice was statistically significantly higher in the pre-trial period, reducing in the test period, and reducing further in the post-trial period (see Table  5 ).

Qualitative findings

A total of 22 participants took part in interviews: five patients and 16 staff members. During the pre-pilot interviews a total of nine staff took part (five in the acute ward, four in the PICU ward) and two patients (both from the acute ward). After the pilot period, a total of eight staff took part (four from each ward) and three patients (all from the acute ward). Table  6 includes a full description of participants.

Below we have presented the key themes aligning to the five core CFIR categories of Intervention Characteristics, Characteristics of Individuals, The Process of Implementation, the Inner Setting, and The Outer Setting (see Table  7 ).

Intervention characteristics

Design and usability of wearing a bwc on the ward.

When discussing the use of the BWCs, staff noted a range of design issues related to the cameras that they said impacted on their use and acceptance of the cameras. This included the nature of the camera pulling on clothing necklines (a particular issue for female staff working on male wards), and overheating causing discomfort and irritation to skin, challenges with infection control, as well as the issue of cameras in a mental health setting where they can be easily grabbed, thrown and broken during an incident. Staff often cited these design issues as related to the lack of proactive use of the cameras on the wards.

There were issues around the devices getting overheated or about it going on your clothing, it pulls down the top… we had one person who was leading on it, whenever he was around, of course, the camera was being used, but if he wasn’t there, people weren’t as proactive in using the camera. Petra (f), Staff, A, Post.

There were also issues with staff forgetting to wear the cameras, forgetting to switch them on during incidents, and forgetting to charge them at the end of the shift, reducing the potential use of the cameras by other staff. These were perceived as key logistical issues prior to the pilot and were reported as issues at the end of the pilot by several staff on the wards.

The practicalities of will they actually turn it on in those sorts of incidents, I don’t know. Just little stuff as well, like if they don’t put it back on the docking station, so you think you’re charging it for next shift but then it’s not charged and the battery is dead, that’s one less camera to use, so little stuff. Jamal (m), Staff, A, Pre.

In relation to usability, staff noted that the cameras were small and easy to use given their simple single switch interface. It was felt that not having to upload and manage the data themselves made cameras more user friendly and usable by staff members. Protocols put into place such as signing the cameras in and out, and allocation for use during shifts were likened to procedures in place for other security measures therefore the implementation of this for the BWCs was viewed as easy for many staff.

It’s just like the ASCOM alarms that we wear. There’s a system to sign in and sign out, and that’s it. Alice (f), Staff, A, Pre.

While staff were generally positive about the usability of the cameras, some were cautious of with concerns for those less confident with technology.

… you have to be conscious that there’s some people – it’s quite easy to use, but I can say that because I’m alright using devices and all that but there’s some that are older age or not that familiar with using devices that may struggle with using it… they’re feeling a bit anxious and a bit scared, if they’re not familiar with it then they won’t use it. Jamal (m), Staff, A, Pre.

Evidence strength and quality: do BWCs change anything?

There were conflicting reports regarding the potential benefits of using BWCs on the wards, with both staff and patients reporting mixed perceptions as to whether the cameras might reduce violence and aggression. In the pre-pilot interviews, some staff reported feeling that the BWCs may have a positive impact on reducing physical violence.

I think it’s going to reduce violence and aggression on the ward…I don’t think they’ll want to punch you…they might be verbally abusive but in terms of physical that might reduce. Sarah (f), Staff, I, Pre.

Patients however noted that the cameras might hold staff to account of their own behaviours and therefore may improve care, however they felt that this impact would wear off after the first few months after which people might forget about the cameras being there.

Now they’ve got the body cams, it’s going to be a lot of changes. They’ll think, ‘Ooh well he’s on tape’. So, it might do something to their conscience, they actually start to listen to patients… until the novelty wears off and it might go back to square one again. Ian (m), Patient, A, Pre.

One staff member suggested that incident rates had reduced following introduction of the BWCs, but they remained unsure as to whether this was due to the cameras, reflecting that violence and aggression on wards can be related to many factors.

I know our violence and aggression has reduced significantly since the start of the cameras pilot… I don’t know, because obviously wearing the camera’s one thing, but if they weren’t in use, I don’t know maybe just the presence of the camera made a difference. But yeah, it’s hard to tell. Petra (f), Staff, A, Post.

In contrast, several staff reported that they had seen limited evidence for such changes.

I used it yesterday. He was aggressive and I used it, but he even when I was using [it] he doesn’t care about the camera… it didn’t make any difference… It doesn’t stop them to do anything, this camera does not stop them to do anything. Abraham (m), Staff, I, Post.

Some staff suggested that in some circumstances the cameras increased patient agitation and created incidents, so there was a need to consider whether the BWCs were going to instigate aggression in some circumstances.

There has been with a few patients because they will threaten you. They will tell you, ‘if you turn it on, I’m gonna smash your head in’. So incidents like that, I will not turn it on… Yeah, or some of them will just tell you, ‘if you come close by, I’m going to pull that off your chest’. So things like that, I just stay back. Ada (f), Staff, A, Post.

One rationale for a potential lack of effectiveness was noted by both staff and patients and was related to the levels of acute illness being experienced by patients which meant that for many they were too unwell to have insight into their own actions or those of staff switching on the cameras.

We’ve had instances where patients are so unwell that they just don’t care. You switch on the camera, whether you switch it on or not, it doesn’t really change the behaviour. ‘All right, okay, whatever switch it on’. They’re so unwell, they’re not really understanding. Petra (f), Staff, A, Post. It might make [staff] feel safer as a placebo effect, but I don’t think it would necessarily make them safer… I think the people that are likely to attack a member of staff are crazy enough that they’re not gonna even consider the camera as a factor. Harry (m), Patient, A, Pre.

This lack of evidence that the cameras were necessarily effective in reducing incident rates or severity of incidents may have had an impact on staff buy-in and the use of the cameras as a result. One staff member reflected that having feedback from senior management about the impact and evidence would have been useful during the pilot period to inform ward staff whether the cameras were influencing things or not.

Staff want feedback. I don’t think we’ve had any since we’ve had the cameras… it would be nice to get feedback from, I don’t know, whoever is watching it, and stuff like that. Ada (f), Staff, A, Post.

Relative advantage: are BWCs effective and efficient for the ward?

Due to a combination of personal beliefs related to BWCs, the lack of evidence of their impact on violence and aggression, and other elements of care and culture on the wards, a number of staff and patients explored alternative interventions and approaches that may be more beneficial than BWCs. Both staff and patients suggested that Closed Circuit Television (CCTV) as an intervention that provided the transparency of using cameras and video footage but with an independent perspective. This was felt by many to remove the bias that could be introduced in BWC use as the video capture didn’t require staff control of the filming.

I feel like [BWCs] puts all the power and trust into the hands of the staff and I feel that it would be better to have CCTV on the ward because CCTV is neutral. Harry (m), Patient, A, Pre. I have control over that [BWC recording] … It kind of gives that split as well between staff and patients. You can tell me or I can tell you when to switch it on. Whereas I feel like a CCTV camera is there all the time. Nobody’s asking to switch it on. It’s there. If you wanted to review the footage you can request it, anyone can request to view the footage for a legitimate reason. Whereas the camera can come across as if you’re threatening. Petra (f), Staff, A, Post.

In addition, some participants reflected that the nature and design of BWCs meant that unless staff were present for an incident it wouldn’t be captured, whereas CCTV has the advantage of being always present.

If there’s CCTV, then it’s the same thing, you get me. Like, if its body worn cameras that people can always do things away from staff. They can always go down to that corridor to have their fight or go to the side where staff ain’t gonna see them to have their fight, but with CCTV you can’t do that. Elijah (m), Patient, A, Post.

In addition to exploring technological and video-based interventions, many staff noted that the key tool to violence reduction had to be the use of de-escalation skills, noting that the use of communication and positive relationships had to be the primary tool before other interventions such as BWCs or CCTV.

We do a lot of verbal de-escalation. So we got our destress room now still open. That has a punch bag, and it’s got sensory tiles, and the aim and hope is that when people do get frustrated, because we’re all human. We all get annoyed at anything or many little things in life. There is the aim that they go into that room and start punching the bag instead of property and damaging furniture. But we also are working really hard on verbal de-escalation and actually trying to listen to patients and talk to them before anything else. And that’s helped a lot. And between this kind of shared, or role modelling, where while we’re showing staff, actually even spending an extra 20 min is okay. If it means you’re not going to end up having to restrain a patient. Petra (f), Staff, A, Post.

By using communication skills and de-escalation techniques skilfully, some staff felt there was no need to utilise the BWCs. One concern with the introduction of the BWCs for staff was that the use of this technology may negatively impact on trust and relationships and the use of de-escalation.

Some situations I feel like it can make a situation worse sometimes… I think a lot of situations can be avoided if you just talk with people…. Trying to find out why they’re angry, trying to just kind of see it from their point of view, understand them… I think maybe additional training for verbal de-escalation is needed first. Patrick (m), Staff, A, Post.

Characteristics of individuals

Staff and patients’ knowledge and beliefs about the intervention.

Overall, there were mixed views among both staff and patients as to whether cameras would reduce incidents, prior to and after the pilot period. When considering the possible impact on violence and aggressive incidents there was a view among staff that there was the need for a nuanced and person-centred view.

All the patients that come in, they’re different you know. They have different perceptions; they like different things… everyone is different. So, it just depends. We might go live, and then we have good feedback because the patients they are open and the understand why we have it, and then as they get discharged and new patients come in it might not go as well. It just depends. Serene (f), Staff, A, Pre.

As a result of the desire to be person-centred in the use of such interventions, one staff member noted that they weighed-up such consequences for the patient before using the BWC and would make decisions not to use the camera where they thought it may have a negative impact.

Actually, with this body worn camera, as I did mention, if a patient is unwell, that doesn’t, the patient will not have the capacity to I mean, say yes, you cannot just put it on like that. Yeah, I know it’s for evidence, but when something happens, you first have to attend to the patient. You first have to attend to the patient before this camera is, for me. Ruby (f), Staff, I, Post.

Some staff questioned the existing evidence and theories as to why BWCs work to reduce incidents, and instead noted that for some people it will instigate an incident, while others may be triggered by a camera.

I’m on the fence of how that is going to work because I know the evidence is that by telling a patient ‘look if you keep escalating I’m gonna have to turn this on’, but I know several of our patients would kind of take that as a dare and escalate just to spite so that you would turn it on. Diana (f), Staff, A, Pre.

In contrast, some staff felt the cameras helped them feel safer on wards due to transparency of footage as evidence for both staff and patients.

They [staff] need to use it for protection, for recording evidence, that type of thing… They can record instances for later evidence. Yeah, for them as well. Safer for them and for patients because you can also have the right to get them to record, because a patient might be in the wrong but sometimes it may be the staff is in the wrong position. And that’s achieving safety for patients as well. Yeah, I think it works both ways. Dylan (m), Patient, A, Post.

Positive buy-in was also related to the potential use of the intervention as a training, learning or reflective tool for staff to improve practice and care and promote positive staff behaviour.

If you know that your actions might be filmed one way or the other, that would make me to step up your behaviour to patients… if you know that your actions can be viewed, if the authority wants to, then you behave properly with patients so I think that will improve the quality of the care to patient. Davide (m), Staff, I, Pre.

While there were some positive attitudes towards the cameras, there remained considerable concerns among participants regarding the transparency of camera use to collate evidence in relation to incidents as it was widely noted that the cameras remain in staff control therefore there is an issue in relation to bias and power.

I do think my gut would say that it wouldn’t necessarily be well received. Because also I think people feel like prisoners in here, that’s how some of the patients have described their experience, so in terms of the power dynamic and also just – I think that can make one feel a bit, even worse, basically, you know? Leslie (m), Staff, A, Pre.

These issues lead to staff reporting they didn’t want to wear the camera.

I’d feel quite uncomfortable wearing one to be honest. Leslie (m), Staff, A, Pre.

The staff control of the cameras had a particular impact on patient acceptability of the intervention as it led to some patients viewing BWCs as being an intervention for staff advantage and staff safety, thus increasing a ‘them and us’ culture and leading to patient resistance to the cameras. This was particularly salient for those with prior negative experiences of police use of cameras or mistrust in staff.

I feel like the fact that the body worn cameras is gonna be similar to how the police use them, if a staff member has negative intent toward a patient, they would be able to instigate an incident and then turn the camera on and use the consequences of what they’ve instigated to expect restraint or injection or whatever else might happen. So, I feel like it would be putting all the power and trust into the hands of the staff and I feel that it would be better to have CCTV on the ward because CCTV is neutral. Whereas, the body worn camera, especially with some of the personality conflicts/bad attitudes, impressions I’ve had from certain members of staff since I’ve been here, I feel like body worn cameras might be abused in that way possible. Harry (m), Patient, A, Pre.

Perceived unintended consequences and impact on care

Prior to the implementation there were concerns from staff that the introduction of BWCs could have consequences beyond the intended use of reducing violence and aggression, unintentionally affecting a range of factors that may impact on the overall delivery of care. There was a key concern regarding the potential negative impact that cameras may have for patients who have paranoia or psychosis as well as for those who may have prior traumatic experiences of being filmed.

It might have negative impacts on these patients because I’m thinking about kind of patients with schizophrenia and things like that who already have paranoid delusions, thinking that people are after them, thinking that people are spying on them, people are watching them, and then seeing kind of cameras around. It might have negative impacts on them. Tayla (f), Staff, I, Pre. When I was admitted I was going through psychosis… I don’t want to be filmed and things like that. So you just see a camera, a guy with a camera on, you are like, are you filming me? Elijah (m), Patient, A, Post.

There was also a considerable concern among both staff and patients that the use of cameras would have a negative impact on the therapeutic relationship between staff and patients. This was felt to be related to the implication that the cameras enhanced a ‘them and us’ dynamic due to the power differential that staff controlling the cameras can create, likened to policing and criminalisation of patients. With the potential of a negative impact on relationships between staff and patients, staff suggested they may be disinclined to use BWCs if it would stop patients speaking to them or approaching them if they needed support.

Yeah, I think it would probably damage [the therapeutic relationship] because I think what’s probably quite helpful is things that maybe create less of a power difference. I think to some extent, [the BWC] might hinder that ability. Like for example imagine going to a therapist and them just like ‘I’ve got this camera in the corner of the room and it’s gonna be filming our session and just in case – or like, just in case I feel that you might get aggressive with me’. Um, I don’t think that’s going to help the therapeutic relationship! Jamal (m), Staff, A, Pre. When you get body worn cameras on there, the relationship as well between staff and patients, is just gonna instantly change because you’re looking like police! Elijah (m), Patient, A, Post.

In contrast, a minority of staff felt that the presence of cameras may improve relationships as they provide transparency of staff behaviour and would encourage staff to behave well and provide high quality care for patients.

It will also help how, improve the way we look at the patients… because if you know that your actions might be filmed one way or the other, that would make me to step up your behaviour you know… you behave properly with patients so I think that will improve the quality of the care to patient. More efficiently, more caring to patient. Davide (m), Staff, I, Pre.

The process of implementation

Planning: top-down implementation.

Staff perceived that BWC implementation directives had been given by senior management or policy stakeholders whom they felt viewed the process from a position of limited understanding due to a lack of ‘frontline’ mental health service experience. This led to a lack of faith amongst staff, and a perception that funds were being misspent.

They sit up there, they just roll it out and see how it works, how it goes. They waste a whole lot of money, millions or whatever, thousands of pounds in it, and then they see that ‘Oh, it’s not gonna work’. They take it back and all of that. Before coming out with it, you need to come speak to us… they just sit up there drinking tea and coffee, and then they’re just like, Oh, yeah, well, let’s do it this way…come stay with these people, work with them, for just I give you a 12 h shift, stay with them. Richard (m), Staff, I, Post.

This was exacerbated when staff felt there was a lack of consultation or explanation.

we don’t always get the ins and outs of certain things…We know that the cameras are coming in and stuff like that, but you know, and obviously it’s gone through every avenue to make sure that it’s fine. But then sometimes we don’t always know the ins and outs to then explain to people why we have the cameras. Patrick (m), Staff, A, Post.

It was also highlighted that due to multiple initiatives being implemented and directives handed down in parallel, staff felt negative towards interventions more widely, with the BWCs being ‘ just another thing to do’ , adding to workload for staff and reducing enthusiasm to use the cameras.

it’s not just to do with the camera, I just think there’s lots of changes happening at once, and there’s loads of new things being constantly introduced that people are just thinking oh it’s another thing. I think that’s what it is more than the camera itself. Alice (f), Staff, A, Pre.

Execution: training, Use and Ward Visibility

Overall, there was a lack of consistency amongst staff in their understanding of the purpose and processes of using the BWCs on the wards.

What do you do, do you record every single thing or, I don’t know. Do you record like, if a patient said, I want to talk to you, confidential, you go sit in a room, do you record things like those or is it just violence and aggression? Ada (f), Staff, A, Post.

The lack of clarity regarding the purpose of the intervention and the appropriate use of the cameras was felt to impact staffs’ attitudes and acceptance of using them and contributed to a lack of transparency or perhaps trust regarding the use of any subsequent video footage.

I think if the importance of the recording was explained a bit more…and how it would improve things, I think people would use it more… that’s why I don’t think it’s always used sometimes… if you’re not sure why some of it’s important, then you’re not going to see the value…I think if you’re gonna keep with them, it’s about updating the training, teaching staff when to use it, then where does that information go? How does that look in terms of improving? Just a bit of transparency, I think. But when you don’t know certain things it’s a bit hard to get behind something or back it, you know? Patrick (m), Staff, A, Post.

The lack of information about the purpose and processes related to the intervention was also seen among patients, with most patients noting that they hadn’t received information about the cameras during their admissions.

No information at all. I don’t think any of the patients know about it. Toby (m), Patient, A, Post.

While training was provided it was widely felt that it was insufficient to provide understanding about the purpose of the cameras or the more in-depth processes beyond operational aspects such as charging and docking. Several staff interviewed were unaware of the training, while others noted that they had an informal run-through by colleagues rather than anything formal.

What training are you talking about?… I wasn’t here, so I was taught by my colleague. I mean, from what I was taught, to operate the camera, and to give a warning to the patient that you’re going to use the camera. Nevis (f), Staff, A, Post.

Longer training with further details beyond operational use was felt to be needed by staff.

I think the training should have to be longer, even if it’s like an hour or something… Like what situations deem the camera to be… more information on the cameras, when to use it, why it’s used, and I think if the importance of the recording was explained a bit more and what it was doing and how that recording would go and how it would improve things. Patrick (m), Staff, A, Post.

Furthermore, there was a need for training to be on a rolling basis given the use of bank staff who were not trained to use the cameras or to understand the proper processes or purpose of using the BWCs, which could leave them vulnerable to misuse or abuse.

We have bank staff [who aren’t trained] so they say ‘I don’t know how to use that camera you are giving me’. Nevis (f), Staff, A, Post.

The inner setting

Ward context: acceptance of violence and aggression is part of the job.

It was widely believed by staff that the nature of working on a mental health ward included accepting that violence and aggression was part of the job. This was not seen as an acceptance of violence but more that the job was providing care for individuals who are mentally unwell, and confusion, fear, frustration and aggression can be part of that. As a result, there was an ambivalence among some staff that the introduction of cameras would change this.

I think like in this line of work, there’s always that potential for like risky behaviours to happen. I’m not sure if putting the camera on will make much difference. Patrick (m), Staff, A, Post.

Staff noted that because of the nature of the job, staff are used to managing these situations and they understood that it was part of the job; therefore, it was unlikely that they would record everything that on paper might be considered an incident.

There’s also enough things that happen here, so I don’t think they would record [the incidents] because it’s just another day here. You know what I’m saying… [staff] can just say, ‘Stop, go back to your room and leave it at that and that kind of be the end of it’. Dylan (m), Patient, A, Post. We are trained for it. Eveline (f), Staff, I, Pre.

This acceptance that incidents are a hazard of mental healthcare was linked to staff’s acknowledgment that many factors make up the complexity of violence and aggression including the nature of individual patients, acuity levels, ward atmosphere, staffing levels, access to activities, leave and outside space. The interplay of multiple factors creates a context in which frustrations and incidents are likely, thus become part of the everyday and ‘normal’ life on the ward for staff and patients alike.

I feel like, you know, how in GP services you say, zero tolerance to abusive language, or any kind of harassment. I don’t think there is that on a psychiatric ward you are kind of expected to take all the abuse and just get on with it. Petra (f), Staff, A, Post.

With staff reported having a higher threshold for these behaviours it was perceived that this was likely to impact on the efficiency of the intervention as staff would be less likely to consider a situation as violent but more ‘ part of the job’ .

Reactive nature of the ward and incidents

Most participants noted that the ward context is always changing with people being admitted and discharged, with daily staff changes and wider turnover of staff, so things are never static and can change at any point. This reflects the dynamic nature of the ward which creates a complex moving picture that staff need to consider and react to.

[the atmosphere] it’s very good at the moment. If you had asked me this two weeks ago, I would say, ‘Oh, my gosh’. But it changes… The type of patient can make your whole ward change… it depends on the client group we have at the time. Nevis (f), Staff, A, Post.

Staff noted that a key limitation of using the cameras to reduce incidents was the reactive nature of the environment and care being provided. This was felt to impact on the feasibility and use of the cameras as staff noted that they often react to what is happening rather than thinking to ‘ put the camera on first ’. It was felt by staff with experience of reacting to incidents that the failure to use BWCs during these processes were linked to staff’s instincts and training to focus on patients as a priority.

Say for instance, you’re in the office, and two patients start fighting, or a patient attacks someone and, all you’re thinking about is to go there to stop the person. You’re not thinking about putting on any camera. You understand? So sometimes it’s halfway through it, somebody might say, ‘Has anybody switched the camera on’? And that’s the time you start recording… If something happens immediately, you’re not thinking about the camera at that time, you’re just thinking to just go, so yeah. Nevis (f), Staff, A, Post.

Incidents happen quickly and often surprise staff, therefore staff react instantly so are not thinking about new processes such as recording on the cameras as this would slow things down or is not in the reactive nature needed by staff during such incidents.

When you’re in the middle of an incident and your adrenaline’s high, you’re focusing on the incident itself. It’s very difficult for you to now remember, remind yourself to switch on the camera because you’re thinking, patient safety, staff safety, who’s coming to relieve you? What’s going on? Who’s at the door? Petra (f), Staff, A, Post.

In addition, the need for an immediate response meant that it was felt that by the time staff remember to, or have the chance to, switch the camera on it was often too late.

Sometimes in the heat of moments and stuff like that, or if the situation’s happening, sometimes you don’t always think to, you know, put your camera on. Patrick (m), Staff, A, Post.

Outer setting

Resources: staffing.

Issues related to staffing were highlighted by several participants as a key problem facing mental health wards thus leading to staff having higher workloads, and higher rates of bank and agency staff being used on shift and feeling burnt-out.

Out of all the wards I’ve been on I’d say this is the worst. It’s primarily because the staff are overworked…it seems like they spend more time doing paperwork than they do interacting with the patients. Harry (m), Patient, A, Pre. We’re in a bit of a crisis at the minute, we’re really, really understaffed. We’re struggling to cover shifts, so the staff are generally quite burnt out. We’ve had a number of people that have just left all at once, so that had an impact… Staff do get frustrated if they’re burnt out from lack of staff and what have you. Alice (f), Staff, A, Pre.

It was noted by one participant that the link of a new intervention with extra workload was likely to have a negative impact on its acceptability due to these increasing demands.

People automatically link the camera to then the additional paperwork that goes alongside it. It’s like, ‘Oh god, if we do this, we’ve got to do that’, and that could play a part. Petra (f), Staff, A, Post.

One staff member noted that the staffing issue meant there were more likely to be bank staff on wards so the care of patients may be affected as temporary staff may be less able to build meaningful therapeutic relationships.

So obviously there is the basic impact on safety of not having adequate staffing, but then there’s the impact of having a lot of bank staff. So obviously when you have permanent staff they get to know the patients more, we’re able to give them the more individualised care that we ideally should be giving them, but we can’t do that with bank staff. Diana (f), Staff, A, Pre.

It was also suggested that staffing levels and mix often made it more difficult to provide activities or facilitate escorted leave which can lead to patients feeling frustrated and becoming more aggressive.

So you know there is enough staff to facilitate the actual shift, so you know when there’s less staff like you say you’ve got people knocking at the door, but then you don’t have staff to take people out on leave straight away, that all has a rippling effect! Serene (f), Staff, A, Pre.

Wider systemic issues

Overall, there was a concern that the introduction of BWCs would not impact on wider, underlying factors that may contribute to frustration, aggression and incidents on wards. Providing a more enhanced level of care and better addressing the needs of patients was felt to be central to helping people but also reducing the frustration that patients feel when on the ward.

… for violence and aggression, [focus on] the mental health side of things like therapy and psychology should be compulsory. It shouldn’t be something you apply for and have to wait three or four weeks for. I think every person should, more than three or four weeks even, months even… we need psychology and therapists. That’s what will stop most violence, because psychologists and a therapist can edit the way that they speak to people because they’ve been given that skill depending on the way the person behaves. So that’s what we need regularly… not like all this dancing therapy, yoga therapy. That’s a person, that you come and you actually sit down and talk through your shit with them. That will help! Elijah (m), Patient, A, Post. There’s a lack of routine and I think there’s a lack of positive interaction between the patient and the staff as well. The only time you interact with a member of staff is if you’re hassling them for something, you have to hassle for every little thing, and it becomes a sort of, frustration inducing and like I’m a very calm person, but I found myself getting very fucking angry, to be honest, on this ward just because out of pure frustration… there’s bigger problems than body worn cameras going on. Harry (m), Patient, A, Pre.

Staff agreed that there was a need to invest in staff and training rather than new technologies or innovations as it is staff and their skills behind the camera.

It’s not the camera that will do all of that. It’s not making the difference. It’s a very good, very beautiful device, probably doing its job in its own way. But it’s more about investing in the staff, giving them that training and making them reflect on every day-to-day shift. Richard (m), Staff, I, Post.

There was felt to be a need to support staff more in delivering care within wards that can be challenging and where patients are unwell to ensure that staff feel safe. While in some circumstances the cameras made some staff feel safer, greater support from management would be more beneficial in making staff feel valued.

In this study exploring the implementation and use of body-worn cameras on mental health wards, we employed two methods for collecting and comparing data on incidents and use of containment measures, including BWCs, on one acute ward and one psychiatric intensive care unit. We found no clear relationship between the use of BWCs and rates or severity of incidents on either ward. While BWCs may be used when there are incidents of both physical and verbal aggression, results indicate that they may also provoke verbal aggression, as was suggested during some interviews within this study. This should be a concern, as strong evidence that being repeatedly subject to verbal aggression and abuse can lead to burnout and withdrawal of care by staff [ 30 ]. These mixed findings reflect results that were reported in two earlier studies of BWCs on mental health wards [ 12 , 13 ]. However, the very low use of the cameras, on just 10 per cent of the shifts where data was obtained, makes it even more difficult to draw any conclusions.

While the data shows limited impact of using BWCs on levels of incidents, we did find that during the pilot period BWC use tended to occur alongside physical restraint, but the direction of relationship is unclear as staff were asked to use BWCs when planning an intervention such as restraint. This relationship with restraint reflected the findings on several wards in a previous study [ 13 ], while contrasting with those reported in a second study that found reductions in incidents involving restraint during the evaluation period [ 12 ]. Such a mix of findings highlights the complexity of using BWCs as a violence reduction method within a busy healthcare setting in which several interacting components and contextual factors, and behaviours by staff and patients can affect outcomes [ 31 ]. The qualitative data collected during this pilot period highlighted the potential systemic and contextual factors such as low staffing that may have a confounding impact on the incident data presented in this simple form.

The findings presented within this evaluation provide some insights into the process of implementing BWCs as a safety intervention in mental health services and highlight some of the challenges and barriers faced. The use of implementation science to evaluate the piloting of BWCs on wards helps to demonstrate how multiple elements including a variety of contextual and systemic factors can have a considerable impact and thus change how a technology may vary not only between hospitals, but even across wards in the same hospital. By understanding the elements that may and do occur during the process of implementing such interventions, we can better understand if and how BWCs might be used in the future.

Within this pilot, extensive preparatory work conducted at a directorate and senior management level did not translate during the process of implementation at a ward level, which appeared to impact on the use of BWCs by individuals on the wards. This highlights that there is a need to utilise implementation science approaches in planning the implementation of new technologies or interventions and to investigate elements related to behavioural change and context rather than just the desired and actual effects of the intervention itself.

While ward staff and patients identified the potential for BWCs to enhance safety on the wards, participants distrusted their deployment and expressed concerns about ethical issues and possible harmful consequences of their use on therapeutic relationships, care provided and patient wellbeing. These themes reflect previous findings from a national interview study of patient and staff perspectives and experiences of BWCs in inpatient mental health wards [ 14 ]. Given these issues, alternatives such as increasing de-escalation skills were identified by staff as possible routes that may be more beneficial in these settings. Furthermore, other approaches such as safety huddles have also been highlighted within the literature as potential means to improve patient safety by looking ahead at what can be attended to or averted [ 32 ].

Furthermore, it is important to consider that the presence of power imbalances and the pre-existing culture on the ward have considerable implications for safety approaches and must be considered, as exemplified by the preferences by both staff and patients in this evaluation for more perceived ‘impartial’ interventions such as CCTV. As identified within previous studies [ 14 ], BWCs can have different implications for psychological safety, particularly for vulnerable patients who already feel criminalised in an environment with asymmetrical power imbalances between staff and patients. This is particularly salient when considering aspects of identity such as race, ethnicity, and gender both in terms of the identities of the patient group but also in terms of the staff/patient relationship.

While preferences in this study note CCTV as more ‘impartial’, work by Desai [ 33 ] draws on the literature about the use of surveillance cameras in other settings (such as public streets) as well as on psychiatric wards and concludes that CCTV monitoring is fraught with difficulties and challenges, and that ‘watching’ patients and staff through the lens of a camera can distort the reality of what is happening within a ward environment. In her recently published book, Desai [ 34 ] develops this theme to explore the impacts of being watched on both patients and staff through her ethnographic research in psychiatric intensive care units. She highlights concerns over the criminalisation of patient behaviour, safeguarding concerns in relation to the way women’s bodies and behaviours are viewed and judged, and the undermining by CCTV of ethical mental health practice by staff who attempt to engage in thoughtful, constructive, therapeutic interactions with patients in face-to-face encounters. Appenzeller et al.’s [ 35 ] review found that whilst the presence of CCTV appeared to increase subjective feelings of safety amongst patients and visitors, there was no objective evidence that video surveillance increases security, and that staff may develop an over-reliance on the technology.

In addition, our findings add to the existing literature which notes that alternative interventions and approaches that address underlying contextual and systemic issues related to improving care on inpatient wards require attention to address the underlying factors related to incidents, e.g., flashpoints [ 36 ]. Evidence suggests that factors leading to incidents can be predicted; therefore, there is a need to enable staff to work in a proactive way to anticipate and prevent incidents rather than view incidents as purely reactive [ 37 , 38 , 39 ]. Such skills-based and relational approaches are likely to impact more on improving safety and reducing incidents by addressing the complex and multi-faceted issue of incidents on inpatient mental health wards [ 40 ].

These findings highlight that interventions such as BWCs are not used within a vacuum, and that hospitals are complex contexts in which there are a range of unique populations, processes, and microsystems that are multi-faceted [ 41 ]. As a result, interventions will encounter both universal, specific, and local barriers that will impact on its functioning in the real world. This is salient because research suggests that camera use inside mental health wards is based on a perception of the violent nature of the mental health patient, a perception that not only influences practice but also impacts how patients experience the ward [ 33 ]. As a result, there needs to be careful consideration of the use of any new and innovative intervention aimed at improving safety within mental health settings that have limited research supporting their efficacy.

Limitations

While the study provides important insights into the efficacy and acceptability of introducing BWCs onto inpatient mental health wards, there were several limitations. Firstly, the analysis of incident data is limited in its nature as it only presents surface level information about incidents without wider contextual information. Results using such data should be cautiously interpreted as they do not account for confounding factors, such as staffing, acuity, ward culture or ward atmosphere, that are likely to contribute to incidents of violence and aggression. For example, while there was a statistically significant decrease in restrictive practice on the PICU across the study period, we know that BWCs were not widely used on that ward, so this is likely due to a confounding variable that was not accounted for in the study design.

Secondly, the study faced limitations in relation to recruitment, particularly with patients. Researchers’ access to wards was challenging due to high staff turnover and high rates of acuity, meaning many patients were not deemed well enough to be able to consent to take part in the study. In addition, the low use of the cameras on wards meant that many patients, and some staff, had not seen the BWCs in use. Similarly, patients had been provided limited information about the pilot, so their ability to engage in the research and describe their own experiences with BWCs was restricted.

Thirdly, analysis captures the active use of the BWC, however it does not fully capture the impact of staff wearing the cameras even where they do not actively use them. While our qualitative analysis provides insight into the limitation of such passive use, it is likely that the presence of the cameras being worn by staff, even when turned off, may have an impact on both staff and patient behaviours. This may explain trends in the data that did not reach significance but warrant further investigation in relation to the presence of BWCs, nonetheless.

Finally, researchers had planned to collect quantitative surveys from staff and patients in relation to their experiences of the ward atmosphere and climate, views related to therapeutic relationships on the ward, levels of burnout among staff, views on care, and attitudes to containment measures. Due to issues related to staff time, patient acuity, and poor engagement from staff leading to challenges accessing the wards, the collection of such survey data was unfeasible, and this element of the study was discontinued. As a result, we have not reported this aspect in our paper. This limitation reflects the busy nature of inpatient mental health wards with pressures on staff and high levels of ill health among patients. As such, traditional methodologies for evaluation are unlikely to elicit data that is comprehensive and meaningful. Alternative approaches may need to be considered.

Future directions

With BWCs being increasingly used across inpatient mental health services [ 14 ], it is important that further research and evaluation is conducted. To date, there is limited data regarding the effectiveness of this technology in relation to violence reduction; however, there may be other beneficial uses in relation to safeguarding and training [ 13 ]. Future research should consider alternative methods that ensure contextual factors are accounted for and that patient voices can be maximised. For example, focus groups with patients currently admitted to a mental health ward or interviews with those who have recently been on a ward that has used the cameras, would bypass problems encountered with capacity to consent in the present study. Furthermore, ethnographic approaches may provide a deeper understanding of the implementation, deployment and impact that BWCs have on wards.

Overall, this research sheds light on the complexities of using BWCs as a tool for ‘maximising safety’ in mental health settings. The findings suggest that BWCs have a limited impact on levels of incidents on wards, something that is likely to be largely influenced by the process of implementation as well as a range of contextual factors, including the staff and patient populations on the wards. As a result, it is likely that while BWCs may see successes in one hospital site this is not guaranteed for another site as such factors will have a considerable impact on efficacy, acceptability, and feasibility. Furthermore, the findings point towards the need for more consideration to be placed on processes of implementation and the complex ethical discussions regarding BWC use from both a patient and a staff perspective.

In conclusion, while there have been advances in digital applications and immersive technologies showing promise of therapeutic benefits for patients and staff more widely, whether BWCs and other surveillance approaches are to be part of that picture remains to be seen and needs to be informed by high-quality, co-produced research that focuses on wider therapeutic aspects of mental healthcare.

Data availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Acknowledgements

We would like to thank The Burdett Trust for Nursing for funding this work. We would also like to acknowledge our wider Lived Experience Advisory Panel and Project Advisory Panel for their contributions and support and would like to thank the staff and service users on the wards we attended for their warmth and participation.

Funding was provided by The Burdett Trust of Nursing. Funders were independent of the research and did not impact findings.

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All authors have read and approved the manuscript. Authors AS, UF, KW, GB created the protocol for the study. KW, JJ, UF conducted the recruitment for the study, and conducted the interviews. UF, JJ, JB, LMA, LU, SMK, KB, ET coded data, and contributed to the analysis. All authors supported drafting and development of the manuscript.

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Foye, U., Wilson, K., Jepps, J. et al. Exploring the use of body worn cameras in acute mental health wards: a mixed-method evaluation of a pilot intervention. BMC Health Serv Res 24 , 681 (2024). https://doi.org/10.1186/s12913-024-11085-x

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Received : 03 January 2024

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DOI : https://doi.org/10.1186/s12913-024-11085-x

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