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What are Systematic Reviews? (3 minutes, 24 second YouTube Video)

Systematic Literature Reviews: Steps & Resources

These steps for conducting a systematic literature review are listed below . 

Also see subpages for more information about:

• The different types of literature reviews, including systematic reviews and other evidence synthesis methods
• Tools & Tutorials

Literature Review & Systematic Review Steps

• Develop a Focused Question
• Scope the Literature  (Initial Search)
• Refine & Expand the Search
• Limit the Results
• Download Citations
• Abstract & Analyze
• Create Flow Diagram
• Synthesize & Report Results

1. Develop a Focused   Question 

Consider the PICO Format: Population/Problem, Intervention, Comparison, Outcome

Focus on defining the Population or Problem and Intervention (don't narrow by Comparison or Outcome just yet!)

"What are the effects of the Pilates method for patients with low back pain?"

Tools & Additional Resources:

• PICO Question Help
• Stillwell, Susan B., DNP, RN, CNE; Fineout-Overholt, Ellen, PhD, RN, FNAP, FAAN; Melnyk, Bernadette Mazurek, PhD, RN, CPNP/PMHNP, FNAP, FAAN; Williamson, Kathleen M., PhD, RN Evidence-Based Practice, Step by Step: Asking the Clinical Question, AJN The American Journal of Nursing : March 2010 - Volume 110 - Issue 3 - p 58-61 doi: 10.1097/01.NAJ.0000368959.11129.79

2. Scope the Literature

A "scoping search" investigates the breadth and/or depth of the initial question or may identify a gap in the literature. 

Eligible studies may be located by searching in:

• Background sources (books, point-of-care tools)
• Article databases
• Trial registries
• Grey literature
• Cited references
• Reference lists

When searching, if possible, translate terms to controlled vocabulary of the database. Use text word searching when necessary.

Use Boolean operators to connect search terms:

• Combine separate concepts with AND  (resulting in a narrower search)
• Connecting synonyms with OR  (resulting in an expanded search)

Search:  pilates AND ("low back pain"  OR  backache )

Video Tutorials - Translating PICO Questions into Search Queries

• Translate Your PICO Into a Search in PubMed (YouTube, Carrie Price, 5:11) 
• Translate Your PICO Into a Search in CINAHL (YouTube, Carrie Price, 4:56)

3. Refine & Expand Your Search

Expand your search strategy with synonymous search terms harvested from:

• database thesauri
• reference lists
• relevant studies

Example: 

(pilates OR exercise movement techniques) AND ("low back pain" OR backache* OR sciatica OR lumbago OR spondylosis)

As you develop a final, reproducible strategy for each database, save your strategies in a:

• a personal database account (e.g., MyNCBI for PubMed)
• Log in with your NYU credentials
• Open and "Make a Copy" to create your own tracker for your literature search strategies

4. Limit Your Results

Use database filters to limit your results based on your defined inclusion/exclusion criteria.  In addition to relying on the databases' categorical filters, you may also need to manually screen results.  

• Limit to Article type, e.g.,:  "randomized controlled trial" OR multicenter study
• Limit by publication years, age groups, language, etc.

NOTE: Many databases allow you to filter to "Full Text Only".  This filter is  not recommended . It excludes articles if their full text is not available in that particular database (CINAHL, PubMed, etc), but if the article is relevant, it is important that you are able to read its title and abstract, regardless of 'full text' status. The full text is likely to be accessible through another source (a different database, or Interlibrary Loan).  

• Filters in PubMed
• CINAHL Advanced Searching Tutorial

5. Download Citations

Selected citations and/or entire sets of search results can be downloaded from the database into a citation management tool. If you are conducting a systematic review that will require reporting according to PRISMA standards, a citation manager can help you keep track of the number of articles that came from each database, as well as the number of duplicate records.

In Zotero, you can create a Collection for the combined results set, and sub-collections for the results from each database you search.  You can then use Zotero's 'Duplicate Items" function to find and merge duplicate records.

• Citation Managers - General Guide

6. Abstract and Analyze

• Migrate citations to data collection/extraction tool
• Screen Title/Abstracts for inclusion/exclusion
• Screen and appraise full text for relevance, methods, 
• Resolve disagreements by consensus

Covidence is a web-based tool that enables you to work with a team to screen titles/abstracts and full text for inclusion in your review, as well as extract data from the included studies.

• Covidence Support
• Critical Appraisal Tools
• Data Extraction Tools

7. Create Flow Diagram

The PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) flow diagram is a visual representation of the flow of records through different phases of a systematic review.  It depicts the number of records identified, included and excluded.  It is best used in conjunction with the PRISMA checklist .

Example from: Stotz, S. A., McNealy, K., Begay, R. L., DeSanto, K., Manson, S. M., & Moore, K. R. (2021). Multi-level diabetes prevention and treatment interventions for Native people in the USA and Canada: A scoping review. Current Diabetes Reports, 2 (11), 46. https://doi.org/10.1007/s11892-021-01414-3

• PRISMA Flow Diagram Generator (ShinyApp.io, Haddaway et al. )
• PRISMA Diagram Templates  (Word and PDF)
• Make a copy of the file to fill out the template
• Image can be downloaded as PDF, PNG, JPG, or SVG
• Covidence generates a PRISMA diagram that is automatically updated as records move through the review phases

8. Synthesize & Report Results

There are a number of reporting guideline available to guide the synthesis and reporting of results in systematic literature reviews.

It is common to organize findings in a matrix, also known as a Table of Evidence (ToE).

• Reporting Guidelines for Systematic Reviews
• Download a sample template of a health sciences review matrix  (GoogleSheets)

Steps modified from: 

Cook, D. A., & West, C. P. (2012). Conducting systematic reviews in medical education: a stepwise approach.   Medical Education , 46 (10), 943–952.

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• Next: What are Literature Reviews? >>
• Last Updated: Apr 13, 2024 9:13 PM
• URL: https://guides.nyu.edu/health

• Open access
• Published: 12 October 2020

A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data

• Elizabeth Hutchings   ORCID: orcid.org/0000-0002-6030-954X 1 ,
• Max Loomes   ORCID: orcid.org/0000-0003-1042-0968 2 ,
• Phyllis Butow   ORCID: orcid.org/0000-0003-3562-6954 2 , 3 , 4 &
• Frances M. Boyle   ORCID: orcid.org/0000-0003-3798-1570 1 , 5  

Systematic Reviews volume  9 , Article number:  240 ( 2020 ) Cite this article

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A systematic literature review of researchers and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain.

Systematic review registration

PROSPERO CRD42018110559

Peer Review reports

Healthcare systems generate large amounts of data; approximately 80 mB of data are generated per patient per year [ 1 ]. It is projected that this figure will continue to grow with an increasing reliance on technologies and diagnostic capabilities. Healthcare data provides an opportunity for secondary data analysis with the capacity to greatly influence medical research, service planning, and health policy.

There are many forms of data collected in the healthcare setting including administrative and clinical trial data which are the focus of this review. Administrative data collected during patients’ care in the primary, secondary, and tertiary settings can be analysed to identify systemic issues and service gaps, and used to inform improved health resourcing. Clinical trials play an essential role in furthering our understanding of disease, advancing new therapeutics, and developing improved supportive care interventions. However, clinical trials are expensive and can take several years to complete; a frequently quoted figure is that it takes 17 years for 14% of clinical research to benefit the patient [ 2 , 3 ].

Those who argue for increased data sharing in healthcare suggest that it may lead to improved treatment decisions based on all available information [ 4 , 5 ], improved identification of causes and clinical manifestations of disease [ 6 ], and provide increased research transparency [ 7 ]. In rare diseases, secondary data analysis may greatly accelerate the medical community’s understanding of the disease’s pathology and influence treatment.

Internationally, there are signs of movement towards greater transparency, particularly with regard to clinical research data. This change has been driven by governments [ 8 ], peak bodies [ 9 ], and clinician led initiatives [ 5 ]. One initiative led by the International Council of Medical Journal Editors (ICMJE) now requires a data sharing plan for all clinical research submitted for publication in a member scientific journal [ 9 ]. Further, international examples of data sharing can be seen in projects such as The Cancer Genome Atlas (TCGA) [ 10 ] dataset and the Surveillance, Epidemiology, and End Results (SEER) [ 11 ] database which have been used extensively for cancer research.

However, consent, data ownership, privacy, intellectual property rights, and potential for misinterpretation of data [ 12 ] remain areas of concern to individuals who are more circumspect about changing the data sharing norm. To date, there has been no published synthesis of views on data sharing from the perspectives of diverse professional stakeholders. Thus, we conducted a systematic review of the literature on the views of researchers and healthcare professionals regarding the sharing of health data.

This systematic literature review was part of a larger review of articles addressing data sharing, undertaken in accordance with the PRISMA statement for systematic reviews and meta-analysis [ 13 ]. The protocol was prospectively registered on PROSPERO ( www.crd.york.ac.uk /PROSPERO, CRD42018110559).

The following databases were searched: EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest. The final search was conducted on 21 October 2018. No date restrictions were placed on the search; key search terms are listed in Table 1 . Papers were considered eligible if they: were published in English; were published in a peer review journal; reported original research, either qualitative or quantitative with any study design, related to data sharing in any disease setting; and included subjects over 18 years of age. Systematic literature reviews were included in the wider search but were not included in the results. Reference list and hand searching were undertaken to identify additional papers. Papers were considered ineligible if they focused on electronic health records, biobanking, or personal health records or were review articles, opinion pieces/articles/letters, editorials, or theses from masters or doctoral research. Duplicates were removed and title and abstract and full-text screening were undertaken using the Cochrane systematic literature review program Covidence [ 14 ]. Two authors were involved in all stages of the review process; conflicts were resolved by consensus.

Quality and bias were assessed at a study level using the QualSyst system for quantitative and qualitative studies as described by Kmet et al. [ 15 ]. A maximum score of 20 is assigned to articles of high quality and low bias; the final QualSyst score is a proportion of the total, with a possible score ranging from 0.0 to 1.0 [ 15 ].

Data extraction was undertaken using a pre-piloted form in Microsoft Office Excel. Data points included author, country and year of study, study design and methodology, health setting, and key themes and results. Where available, detailed information on research participants was extracted including age, sex, clinical/academic employment setting, publication and grant history, career stage, and world region.

Quantitative data were summarised using descriptive statistics. Synthesis of qualitative findings used a meta-ethnographic approach, in accordance with guidelines from Lockwood et al. [ 16 ].The main themes of each qualitative study were first identified and then combined, if relevant, into categories of commonality. Using a constant comparative approach, higher order themes and subthemes were developed. Quantitative data relevant to each theme were then incorporated. Using a framework analysis approach as described by Gale et al. [ 17 ], the perspectives of different professional groups (researchers, healthcare professionals, data custodians, and ethics committees) towards data sharing were identified. Where differences occurred, they are highlighted in the results. Similarly, where systematic differences according to other characteristics (such as age or years of experience), these are highlighted.

This search identified 4019 articles, of which 241 underwent full-text screening; 73 articles met the inclusion criteria for the larger review. Five systematic literature reviews were excluded as was one article which presented duplicate results; this left a total of 67 articles eligible for review. See Fig. 1 for the PRISMA diagram describing study screening.

PRIMSA flow diagram (attached)

This systematic literature review was originally developed to identify attitudes towards secondary use and sharing of health administrative and clinical trial data in breast cancer. However, as there was a paucity of material identified specifically related to this group, we present the multidisciplinary results of this search, and where possible highlight results specific to breast cancer, and cancer more generally. We believe that the material identified in this search is relevant and reflective of the wider attitudes towards data sharing within the scientific and medical communities and can be used to inform data sharing strategies in breast cancer.

Eighteen [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ] of the 67 articles addressed the perspectives of clinical and scientific researchers, data custodians, and ethics committees and were analysed for this paper (Table 2 ). The majority ( n = 16) of articles focused on the views of researchers and health professionals, [ 18 , 19 , 20 , 21 , 22 , 24 , 25 , 26 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], only one article focused on data custodians [ 27 ] and ethics committees [ 23 ] respectively. Four articles [ 18 , 19 , 21 , 35 ] included a discussion on the attitudes of both researchers and healthcare professionals and patients; only results relating to researchers/clinicians are included in this analysis (Fig. 1 ).

Study design, location, and disciplines

Several study methodologies were used, including surveys ( n = 11) [ 24 , 25 , 26 , 27 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], interviews and focus groups ( n = 6) [ 18 , 19 , 20 , 21 , 22 , 23 ], and mixed methods ( n = 1) [ 28 ]. Studies were conducted in a several countries and regions; a breakdown by country and study is available in Table 3 .

In addition to papers focusing on general health and sciences [ 18 , 21 , 22 , 24 , 25 , 26 , 29 , 30 , 31 , 32 , 33 , 34 ], two articles included views from both science and non-science disciplines [ 27 , 28 ]. Multiple sclerosis (MS) [ 19 ], mental health [ 35 ], and human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS)/tuberculosis (TB) [ 20 ] were each the subject of one article.

Study quality

Results of the quality assessment are provided in Table 2 . QualSyst [15] scores ranged from 0.7 to 1.0 (possible range 0.0 to 1.0). While none were blinded studies, most provided clear information on respondent selection, data analysis methods, and justifiable study design and methodology.

Four key themes, barriers, facilitators, access, and ownership were identified; 14 subthemes were identified. A graphical representation of article themes is presented in Fig. 2 . Two articles reflect the perspective of research ethics committees [ 23 ] and data custodians [ 27 ]; concerns noted by these groups are similar to those highlighted by researchers and healthcare professionals.

Graphic representation of key themes and subthemes identified (attached)

Barriers and facilitators

Reasons for not sharing.

Eleven articles identified barriers to data sharing [ 20 , 22 , 24 , 25 , 27 , 29 , 30 , 31 , 32 , 33 , 34 ]. Concerns cited by respondents included other researchers taking their results [ 24 , 25 ], having data misinterpreted or misattributed [ 24 , 27 , 31 , 32 ], loss of opportunities to maximise intellectual property [ 24 , 25 , 27 ], and loss of publication opportunities [ 24 , 25 ] or funding [ 25 ]. Results of a qualitative study showed respondents emphasised the competitive value of research data and its capacity to advance an individual’s career [ 20 ] and the potential for competitive disadvantage with data sharing [ 22 ]. Systematic issues related to increased data sharing were noted in several articles where it was suggested the barriers are ‘deeply rooted in the practices and culture of the research process as well as the researchers themselves’ [ 33 ] (p. 1), and that scientific competition and a lack of incentive in academia to share data remain barriers to increased sharing [ 30 ].

Insufficient time, lack of funding, limited storage infrastructure, and lack of procedural standards were also noted as barriers [ 33 ]. Quantitative results demonstrated that the researchers did not have the right to make the data public or that there was no requirement to share by the study sponsor [ 33 ]. Maintaining the balance between investigator and funder interests and the protection of research subjects [ 31 ] were also cited as barriers. Concerns about privacy were noted in four articles [ 25 , 27 , 29 , 30 ]; one study indicated that clinical researchers were significantly more concerned with issues of privacy compared to scientific researchers [ 25 ]. The results of one qualitative study indicated that clinicians were more cautious than patients regarding the inclusion of personal information in a disease specific registry; the authors suggest this may be a result of potential for legal challenges in the setting of a lack of explicit consent and consistent guidelines [ 19 ]. Researchers, particularly clinical staff, indicated that they did not see sharing data in a repository as relevant to their work [ 29 ]

Trust was also identified as a barrier to greater data sharing [ 32 ]. Rathi et al. identified that researchers were likely to withhold data if they mistrusted the intent of the researcher requesting the information [ 32 ]. Ethical, moral, and legal issues were other potential barriers cited [ 19 , 22 ]. In one quantitative study, 74% of respondents ( N = 317) indicated that ensuring appropriate data use was a concern; other concerns included data not being appropriate for the requested purpose [ 32 ]. Concerns about data quality were also cited as a barrier to data reuse; some respondents suggested that there was a perceived negative association of data reuse among health scientists [ 30 ].

Reasons for sharing

Eleven articles [ 19 , 20 , 21 , 22 , 24 , 25 , 29 , 30 , 31 , 32 , 33 ] discussed the reasons identified by researchers and healthcare professionals for sharing health data; broadly the principle of data sharing was seen as a desirable norm [ 25 , 31 ]. Cited benefits included improvements to the delivery of care, communication and receipt of information, impacts on care and quality of life [ 19 ], contributing to the advancement of science [ 20 , 24 , 29 ], validating scientific outputs, reducing duplication of scientific effort and minimising research costs [ 20 ], and promoting open science [ 31 , 32 ]. Professional reasons for sharing data included academic benefit and recognition, networking and collaborative opportunities [ 20 , 24 , 29 , 31 ], and contributing to the visibility of their research [ 24 ]. Several articles noted the potential of shared data for enabling faster access to a wider pool of patients [ 21 ] for research, improved access to population data for longitudinal studies [ 22 ], and increased responsiveness to public health needs [ 20 ]. In one study, a small percentage of respondents indicated that there were no benefits from sharing their data [ 24 ].

Analysis of quantitative survey data indicated that the perceived usefulness of data was most strongly associated with reuse intention [ 30 ]. The lack of access to data generated by other researchers or institutions was seen as a major impediment to progress in science [ 33 ]. In a second study, quantitative data showed no significant differences in reasons for sharing by clinical trialists’ academic productivity, geographic location, trial funding source or size, or the journal in which the results were published [ 32 ]. Attitudes towards sharing in order to receive academic benefits or recognition differed significantly based on the respondent’s geographic location; those from Western Europe were more willing to share compared to respondents in the USA or Canada, and the rest of the world [ 32 ].

Views on sharing

Seven articles [ 19 , 20 , 21 , 29 , 31 , 33 , 34 ] discussed researchers’ and healthcare professionals’ views relating to sharing data, with a broad range of views noted. Two articles, both qualitative, discussed the role of national registries [ 21 ], and data repositories [ 31 ]. Generally, there was clear support for national research registers and an acceptance for their rationale [ 21 ], and some respondents believed that sharing de-identified data through data repositories should be required and that when requested, investigators should share data [ 31 ]. Sharing de-identified data for reasons beyond academic and public health benefit were cited as a concern [ 20 ]. Two quantitative studies noted a proportion of researchers who believed that data should not be made available [ 33 , 34 ]. Researchers also expressed differences in how shared data should be managed; the requirement for data to be ‘gate-kept’ was preferred by some, while others were happy to relinquish control of their data once curated or on release [ 20 ]. Quantitative results indicated that scientists were significantly more likely to rank data reuse as highly relevant to their work than clinicians [ 29 ], but not all scientists shared data equally or had the same views about data sharing or reuse [ 33 ]. Some respondents argued that not all data were equal and therefore should only be shared in certain circumstances. This was in direct contrast to other respondents who suggested that all data should be shared, all of the time [ 20 ].

Differences by age, background, discipline, professional focus, and world region

Differences in attitudes towards shared data were noted by age, professional focus, and world region [ 25 , 27 , 33 , 34 ]. Younger researchers, aged between 20–39 and 40–49 years, were less likely to share their data with others (39% and 38% respectively) compared to other age groups; respondents aged over 50 years of age were more willing (46%) to share [ 33 ]. Interestingly, while less willing to share, younger researchers also believed that the lack of access to data was a major impediment to science and their research [ 33 ]. Where younger researchers were able to place conditions on access to their data, rates of willingness to share were increased [ 33 ].

Respondents from the disciplines of education, medicine/health science, and psychology were more inclined than others to agree that their data should not be available for others to use in the first place [ 34 ]. However, results from one study indicated that researchers from the medical field and social sciences were less likely to share compared to other disciplines [ 33 ]. For example, results of a quantitative study showed that compared to biologists, who reported sharing 85% of their data, medical and social sciences reported sharing their data 65% and 58% percent of the time, respectively [ 33 ].

One of the primary reasons for controlling access to data, identified in a study of data custodians, was due to a desire to avoid data misuse; this was cited as a factor for all surveyed data repositories except those of an interdisciplinary nature [ 27 ]. Limiting access to certain types of research and ensuring attribution were not listed as a concern for sociology, humanities or interdisciplinary data collections [ 27 ]. Issues pertaining to privacy and sensitive data were only cited as concerns for data collections related to humanities, social sciences, and biology, ecology, and chemistry; concerns regarding intellectual property were also noted [ 27 ]. The disciplines of biology, ecology, and chemistry and social sciences had the most policy restrictions on the use of data held in their repositories [ 27 ].

Differences in data sharing practices were also noted by world region. Respondents not from North American and European countries were more willing to place their data on a central repository; however, they were also more likely to place conditions on the reuse of their data [ 33 , 34 ].

Experience of data sharing

The experience of data sharing among researchers was discussed in nine articles [ 20 , 24 , 25 , 26 , 28 , 29 , 30 , 31 , 32 , 33 ]. Data sharing arrangements were highly individual and ranged from ad hoc and informal processes to formal procedures enforced by institutional policies in the form of contractual agreements, with respondents indicating data sharing behaviour ranging from sharing no data to sharing all data [ 20 , 26 , 31 ]. Quantitative data from one study showed that researchers were more inclined to share data prior to publication with people that they knew compared to those they did not; post publication, these figures were similar between groups [ 24 ]. While many researchers were prepared to share data, results of a survey identified a preference of researchers to collect data themselves, followed by their team, or by close colleagues [ 26 ].

Differences in the stated rate of data sharing compared to the actual rate of sharing [ 25 ] were noted. In a large quantitative study ( N = 1329), nearly one third of respondents chose not to answer whether they make their data available to others; of those who responded to the question, 46% reported they do not make their data electronically available to others [ 33 ]. By discipline, differences in the rate of refusal to share were higher in chemistry compared to non-science disciplines such as sociology [ 25 ]. Respondents who were more academically productive (> 25 articles over the past 3 years) reported that they have or would withhold data to protect research subjects less frequently than those who were less academically productive or received industry funding [ 32 ].

Attitudes to sharing de-identified data via data repositories was discussed in two articles [ 29 , 31 ]. A majority of respondents in one study indicated that de-identified data should be shared via a repository and that it should be shared when requested. A lack of experience in uploading data to repositories was noted as a barrier [ 29 ]. When data was shared, most researchers included additional materials to support their data including materials such as metadata or a protocol description [ 29 ].

Two articles [ 28 , 30 ] focused on processes and variables associated with sharing. Factors such as norms, data infrastructure/organisational support, and research communities were identified as important factors in a researcher’s attitude towards data sharing [ 28 , 30 ]. A moderate correlation between data reuse and data sharing suggest that these two variables are not linked. Furthermore, sharing data compared to self-reported data reuse were also only moderately associated (Pearson’s correlation of 0.25 ( p ≤ 0.001)) [ 26 ].

Predictors of data sharing and norms

Two articles [ 26 , 30 ] discussed the role of social norms and an individual’s willingness to share health data. Perceived efficacy and efficiency of data reuse were strong predictors of data sharing [ 26 ] and the development of a ‘positive social norm towards data sharing support(s)[ed] researcher data reuse intention’ [ 30 ] (p. 400).

Policy framework

The establishment of clear policies and procedures to support data sharing was highlighted in two articles [ 22 , 28 ]. The presence of ambiguous data sharing policies was noted as a major limitation, particularly in primary care and the increased adoption of health informatics systems [ 22 ]. Policies that support an efficient exchange system allowing for the maximum amount of data sharing are preferred and may include incentives such as formal recognition and financial reimbursement; a framework for this is proposed in Fecher et al. [ 28 ].

Research funding

The requirement to share data funded by public monies was discussed in one article [ 25 ]. Some cases were reported of researchers refusing to share data funded by tax-payer funds; reasons for refusal included a potential reduction in future funding or publishing opportunities [ 25 ].

Access and ownership

Articles relating to access and ownership were grouped together and seven subthemes were identified.

Access, information systems, and metadata

Ten articles [ 19 , 20 , 21 , 22 , 26 , 27 , 29 , 33 , 34 , 35 ] discussed the themes of access, information systems, and the use of metadata. Ensuring privacy protections in a prospective manner was seen as important for data held in registries [ 19 ]. In the setting of mental health, researchers indicated that patients should have more choices for controlling access to shared registry data [ 35 ]. The use of guardianship committees [ 19 ] or gate-keepers [ 20 ] was seen as important in ensuring the security and access to data held in registries by some respondents; however, many suggested that a researcher should relinquish control of the data collection once curated or released, unless embargoed [ 20 ]. Reasons for maintaining control over registry data included ensuring attribution, restricting commercial research, protecting sensitive (non-personal) information, and limiting certain types of research [ 27 ]. Concerns about security and confidentiality were noted as important and assurances about these needed to be provided; accountability and transparency mechanisms also need to be included [ 21 ]. Many respondents believed that access to the registry data by pharmaceutical companies and marketing agencies was not considered appropriate [ 19 ].

Respondents to a survey from medicine and social sciences were less likely to agree to have all data included on a central repository with no restrictions [ 33 ]; notably, this was also reflected in the results of qualitative research which indicated that health professionals were more cautious than patients about the inclusion of personal data within a disease specific register [ 19 ].

While many researchers stated that they commonly shared data directly with other researchers, most did not have experience with uploading data to repositories [ 29 ]. Results from a survey indicated that younger respondents have more data access restrictions and thought that their data is easier to access significantly more than older respondents [ 34 ]. In the primary care setting, concerns were noted about the potential for practitioners to block patient involvement in a registry by refusing access to a patient’s personal data or by not giving permission for the data to be extracted from their clinical system [ 21 ]. There was also resistance in primary care towards health data amalgamation undertaken for an unspecified purpose [ 22 ]; respondents were not in favour of systems which included unwanted functionality (do not want/need), inadequate attributes (capability and receptivity) of the practice, or undesirable impact on the role of the general practitioner (autonomy, status, control, and workflow) [ 22 ].

Access to ‘comprehensive metadata (is needed) to support the correct interpretation of the data’ [ 26 ] (p. 4) at a later stage. When additional materials were shared, most researchers shared contextualising information or a description of the experimental protocol [ 29 ]. The use of metadata standards was not universal with some respondents using their own [ 33 ].

Several articles highlighted the impact of data curation on researchers’ time [ 20 , 21 , 22 , 29 , 33 ] or finances [ 24 , 28 , 29 , 33 , 34 ]; these were seen as potential barriers to increased registry adoption [ 21 ]. Tasks required for curation included preparing data for dissemination in a usable format and uploading data to repositories. The importance of ensuring that the data is accurately preserved for future reuse was highlighted; it must be presented in a retriable and auditable manner [ 20 ]. The amount of time required to curate data ranged from ‘no additional time’ to ‘greater than ten hours’ [ 29 ]. In one study, no clinical respondent had their data in a sharable format [ 29 ]. In the primary care setting, health information systems which promote sharing were not seen as being beneficial if they required standardisation of processes and/or sharing of clinical notes [ 22 ]. Further, spending time on non-medical issues in a time poor environment [ 22 ] was identified as a barrier. Six articles described the provision of funding or technical support to ensure data storage, maintenance, and the ability to provide access to data when requested. All noted a lack of funding and time as a barrier to increased sharing data [ 20 , 24 , 28 , 29 , 33 , 34 ].

Results of qualitative research indicated a range of views regarding consent mechanisms for future data use [ 18 , 19 , 20 , 23 , 35 ]. Consenting for future research can be complex given that the exact nature of the study will be unknown, and therefore some respondents suggested that a broad statement on future data uses be included [ 19 , 20 ] during the consent process. In contrast, other participants indicated that the current consent processes were too broad and do not reflect patient preferences sufficiently [ 35 ]. The importance of respecting the original consent in all future research was noted [ 20 ]. It was suggested that seeking additional consent for future data use may discourage participation in the original study [ 20 ]. Differences in views regarding the provision of detailed information about sharing individual level data was noted suggesting that the researchers wanted to exert some control over data they had collected [ 20 ]. An opt-out consent process was considered appropriate in some situations [ 18 ] but not all; some respondents suggested that consent to use a patient’s medical records was not required [ 18 ]. There was support by some researchers to provide patients with the option to ‘opt-in’ to different levels of involvement in a registry setting [ 19 ]. Providing patients more granular choices when controlling access to their medical data [ 35 ] was seen as important.

The attitudes of ethics and review boards ( N = 30) towards the use of medical records for research was discussed in one article [ 23 ]. While 38% indicated that no further consent would be required, 47% required participant consent, and 10% said that the requirement for consent would depend on how the potentially identifying variables would be managed [ 23 ]. External researcher access to medical record data was associated with a requirement for consent [ 23 ].

Acknowledgement

The importance of establishing mechanisms which acknowledge the use of shared data were discussed in four articles [ 27 , 29 , 33 , 34 ]. A significant proportion of respondents to a survey believed it was fair to use other researchers’ data if they acknowledged the originator and the funding body in all disseminated work or as a formal citation in published works [ 33 ]. Other mechanisms for acknowledging the data originator included opportunities to collaborate on the project, reciprocal data sharing agreements, allowing the originator to review or comment on results, but not approve derivative works, or the provision of a list of products making use of the data and co-authorship [ 33 , 34 ]. In the setting of controlled data collections, survey results indicated that ensuring attribution was a motivator for controlled access [ 27 ]. Over half of respondents in one survey believed it was fair to disseminate results based either in whole or part without the data provider’s approval [ 33 ]. No significant differences in mechanisms for acknowledgement were noted between clinical and scientific participants; mechanisms included co-authorship, recognition in the acknowledgement section of publications, and citation in the bibliography [ 29 ]. No consentient method for acknowledging shared data reuse was identified [ 29 ].

Data ownership was identified as a potential barrier to increased data sharing in academic research [ 28 ]. In the setting of control of data collections, survey respondents indicated that they wanted to maintain some control over the dataset, which is suggestive of researchers having a perceived ownership of their research data [ 28 ]. Examples of researchers extending ownership over their data include the right to publish first and the control of access to datasets [ 28 ]. Fecher et al. noted that the idea of data ownership by the researcher is not a position always supported legally; ‘the ownership and rights of use, privacy, contractual consent and copyright’ are subsumed [ 28 ] (p. 15). Rather data sharing is restricted by privacy law, which is applied to datasets containing data from individuals. The legal uncertainty about data ownership and the complexity of law can deter data sharing [ 28 ].

Promotion/professional criteria

The role of data sharing and its relation to promotion and professional criteria were discussed in two articles [ 24 , 28 ]. The requirement to share data is rarely a promotion or professional criterion, rather the systems are based on grants and publication history [ 24 , 28 ]. One study noted that while the traditional link between publication history and promotion remains, it is ‘likely that funders will continue to get sub-optimal returns on their investments, and that data will continue to be inefficiently utilised and disseminated’ [ 24 ] (p. 49).

This systematic literature review highlights the ongoing complexity associated with increasing data sharing across the sciences. No additional literature meeting the inclusion criteria were identified in the period between the data search and the submission of this manuscript. Data gaps identified include a paucity of information specifically related to the attitudes of breast cancer researchers and health professionals towards the secondary use and sharing of health administrative and clinical trial data.

While the majority of respondents believed the principles of data sharing were sound, significant barriers remain: issues of consent, privacy, information security, and ownership were key themes throughout the literature. Data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region.

Addressing concerns of privacy, trust, and information security in a technologically changing and challenging landscape is complex. Ensuring the balance between privacy and sharing data for the greater good will require the formation of policy and procedures, which promote both these ideals.

Establishing clear consent mechanisms would provide greater clarity for all parties involved in the data sharing debate. Ensuring that appropriate consent for future research, including secondary data analysis and sharing and linking of datasets, is gained at the point of data collection, would continue to promote research transparency and provide healthcare professionals and researchers with knowledge that an individual is aware that their data may be used for other research purposes. The establishment of policy which supports and promotes the secondary use of data and data sharing will assist in the normalisation of this type of health research. With the increased promotion of data sharing and secondary data analysis as an established tool in health research, over time barriers to its use, including perceptions of ownership and concerns regarding privacy and consent, will decrease.

The importance of establishing clear and formal processes associated with acknowledging the use of shared data has been underscored in the results presented. Initiatives such as the Bioresource Research Impact Factor/Framework (BRIF) [ 36 ] and the Citation of BioResources in journal Articles (CoBRA) [ 37 ] have sought to formalise the process. However, increased academic recognition of sharing data for secondary analysis requires further development and the allocation of funding to ensure that collected data is in a usable, searchable, and retrievable format. Further, there needs to be a shift away from the traditional criteria of academic promotion, which includes research outputs, to one which is inclusive of a researcher’s data sharing history and the availability of their research dataset for secondary analysis.

The capacity to identify and use already collected data was identified as a barrier. Moves to make data findable, accessible, interoperable, and reusable (FAIR) have been promoted as a means to encourage greater accessibility to data in a systematic way [ 38 ]. The FAIR principles focus on data characteristics and should be interpreted alongside the collective benefit, authority to control, responsibility, and ethics (CARE) principles established by the Global Indigenous Data Alliance (GIDA) which a people and purpose orientated [ 39 ].

Limitations

The papers included in this study were limited to those indexed on major databases. Some literature on this topic may have been excluded if it was not identified during the grey literature and hand searching phases.

Implications

Results of this systematic literature review indicate that while there is broad agreement for the principles of data sharing in medical research, there remain disagreements about the infrastructure and procedures associated with the data sharing process. Additional work is therefore required on areas such as acknowledgement, curation, and data ownership.

While the literature confirms that there is overall support for data sharing in medical and scientific research, there remain significant barriers to its uptake. These include concerns about privacy, consent, information security, and data ownership.

Availability of data and materials

All data generated or analysed during this study are included in this published article.

Abbreviations

Bioresource Research Impact Factor/Framework

Collective benefit, authority to control, responsibility, and ethics

Citation of BioResources in journal Articles

Findable, accessible, interoperable, and reusable

Global Indigenous Data Alliance

Human immunodeficiency virus/acquired immunodeficiency

International Council of Medical Journal Editors

Multiple sclerosis

Surveillance, Epidemiology, and End Results

Tuberculosis

The Cancer Genome Atlas

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Acknowledgements

The authors would like to thank Ms. Ngaire Pettit-Young, Information First, Sydney, NSW, Australia, for her assistance in developing the search strategy.

This project was supported by the Sydney Vital, Translational Cancer Research, through a Cancer Institute NSW competitive grant. The views expressed herein are those of the authors and are not necessarily those of the Cancer Institute NSW. FB is supported in her academic role by the Friends of the Mater Foundation.

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EH, PB, and FB were responsible for developing the study concept and the development of the protocol. EH and ML were responsible for the data extraction and data analysis. FB and PB supervised this research. All authors participated in interpreting the findings and contributed the intellectual content of the manuscript. All authors have read and approved the manuscript.

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Hutchings, E., Loomes, M., Butow, P. et al. A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data. Syst Rev 9 , 240 (2020). https://doi.org/10.1186/s13643-020-01485-5

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A literature review provides an overview of what's been written about a specific topic. There are many different types of literature reviews. They vary in terms of comprehensiveness, types of study included, and purpose. 

The other pages in this guide will cover some basic steps to consider when conducting a traditional health sciences literature review. See below for a quick look at some of the more popular types of literature reviews.

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Literature Review Overview

What is a Literature Review? Why Are They Important?

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

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

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

Literature Review Steps

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

1. Choose a topic and define your research question

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

2. Determine the scope of your review

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

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

3. Develop a search plan

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

4. Conduct searches and find relevant literature

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

5. Review the literature

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

6. Organize and synthesize

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

Organizing Information

Options to assist in organizing sources and information :

1. Synthesis Matrix

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

3. Summary Table

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

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

Literature Review Sections

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

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

Standalone Literature Review (aka Narrative Review):

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

Literature Review as Part of a Research Study Manuscript:

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

Literature Reviews vs Systematic Reviews

Systematic Reviews are NOT the same as a Literature Review:

Literature Reviews:

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

Systematic Reviews:

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

Literature Review Examples

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

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

Resources for Writing a Literature Review

These sources have been used in developing this guide.

Resources Used on This Page

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

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

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

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Health literacy in cancer care: A systematic review

Affiliations.

• 1 Department of University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden. Electronic address: [email protected].
• 2 Department of University Health Care Research Center, Faculty of Humanities and Social Sciences, Örebro, Sweden.
• 3 School of Medical Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
• 4 Department of University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
• 5 School of Health Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
• PMID: 38608377
• DOI: 10.1016/j.ejon.2024.102582

Purpose: Health literacy (HL) is a set of knowledge and skills that enables individuals to interpret and act upon health information, which is essential for health equity. There is a growing body of evidence in the field of HL in cancer care but there is, to our knowledge, no systematic review that explores the association between sociodemographic factors and HL among patients with cancer. The aim of this study was therefore to conduct a systematic review of the existing literature that assesses HL levels and the relationship between HL and sociodemographic factors in an adult cancer population.

Methods: This is a systematic review and its protocol was registered in PROSPERO (ID: CRD42021164071). The study was conducted in accordance with the PRISMA statement. The literature search, from December 2009 to September 2023, was made in six databases, AMED, CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science Core Collection.

Results: Fifteen studies were included in the review. The included studies used nine different measurement tools for assessing HL. In the included studies between 11.9 % and 86 % had limited HL. We identified a relationship between limited HL and annual income, education level, ethnicity, living in rural areas and multiple comorbidities.

Conclusion: The results indicate that limited HL is prevalent in the cancer population and should be acknowledge in everyday practice to meet health equity. Our awareness about sociodemographic factors and its association with HL, may enhance adherence to cancer treatment and quality of life, and lower physical and emotional distress.

Keywords: Cancer; Health equity; Health literacy; Neoplasm; Social determinants of health.

Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.

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• Open access
• Published: 01 December 2023

Compassion fatigue in healthcare providers: a scoping review

• Anna Garnett 1 ,
• Lucy Hui 2 ,
• Christina Oleynikov 1 &
• Sheila Boamah 3  

BMC Health Services Research volume  23 , Article number:  1336 ( 2023 ) Cite this article

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The detrimental impacts of COVID-19 on healthcare providers’ psychological health and well-being continue to affect their professional roles and activities, leading to compassion fatigue. The purpose of this review was to identify and summarize published literature on compassion fatigue among healthcare providers and its impact on patient care. Six databases were searched: MEDLINE (Ovid), PsycINFO (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, for studies on compassion fatigue in healthcare providers, published in English from the peak of the pandemic in 2020 to 2023. To expand the search, reference lists of included studies were hand searched to locate additional relevant studies. The studies primarily focused on nurses, physicians, and other allied health professionals. This scoping review was registered on Open Science Framework (OSF), using the Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) extension to scoping review. From 11,715 search results, 24 met the inclusion criteria. Findings are presented using four themes: prevalence of compassion fatigue; antecedents of compassion fatigue; consequences of compassion fatigue; and interventions to address compassion fatigue. The potential antecedents of compassion fatigue are grouped under individual-, organization-, and systems-level factors. Our findings suggest that healthcare providers differ in risk for developing compassion fatigue in a country-dependent manner. Interventions such as increasing available personnel helped to minimize the occurrence of compassion fatigue. This scoping review offers important insight on the common causes and potential risks for compassion fatigue among healthcare providers and identifies potential strategies to support healthcare providers’ psychological health and well-being.

• What do we already know about this topic? The elevated and persistent mental stress associated with the COVID-19 pandemic predisposed healthcare providers (HCP) to various psychological conditions such as compassion fatigue. Declines in health providers’ mental health has been observed to negatively impact their professional performance and the quality of patient care.

• How does your research contribute to the field? This review provides an overview of the prevalence of compassion fatigue among HCPs across the globe during the COVID-19 pandemic. The main risk factors for compassion fatigue include younger age, female sex, being either a physician or a nurse, high workload, extensive work hours, and limited access to personal protective equipment (PPE). Negative behavioral intention towards patients has been identified to be a consequence of compassion fatigue. Interventions such as the provision of emotional support, increased monitoring for conditions such as stress and burnout, and increasing available personnel helped to minimize the occurrence of compassion fatigue.

• What are your research’s implications towards theory, practice, or policy? While the public health emergency associated with the COVID-19 pandemic has ended, the impact on human health resources persists. The findings of this review can inform policy decisions and implementation of evidence-based strategies to prevent, manage, and lessen the negative effects of compassion fatigue on HCPs and its subsequent impacts on patient care.

Peer Review reports

Introduction

The 2019-novel coronavirus disease (COVID-19) outbreak spread rapidly and by January 30 th , 2022 was formally proclaimed a global health emergency despite being first identified just over a month prior [ 1 ]. Although there have been five other global health emergencies associated with disease outbreaks since 2009, none has matched the scale and scope of the COVID-19 pandemic [ 2 ]. In the short-term the rapid increase in patients requiring acute care services presented unprecedented challenges for health systems. Care provision and infection control strategies were hampered by capacity limitations, staffing shortfalls and supply chain challenges [ 3 ]. As a result, healthcare providers (HCPs) encountered mounting levels of strain which have continued with little reprieve for the duration of and beyond the global COVID-19 pandemic. Limited access to personal protective equipment (PPEs) exacerbated transmission of the virus, compounding healthcare providers’ fears of contracting and spreading COVID-19 among their peers, patients and families [ 4 , 5 , 6 , 7 ]. HCPs also contracted COVID-19, became seriously ill and died with global estimates of HCP death between January 2020 and May 2021 being over 100,000. With time, the number of absences, extended sick leaves and staff turnovers increased [ 7 , 8 ]. The combination of short staffing, frequent changes to workflow and continuous care provision to patients who were gravely ill and had high mortality amplified the toll on health care providers [ 8 , 9 ]. While no longer a global health emergency, there continue to be COVID-19 cases and deaths. As of July 14, 2023 there were 767,972,961 COVID-19 cases and 6,950,655 deaths globally [ 10 ].

HCPs around the globe who treated severe COVID-19 cases, a process which necessitated in-depth compassionate engagement, became vulnerable to developing compassion fatigue as a result of their continued and in-depth involvement in the care of these severely ill patients and their families [ 11 ]. Compassion fatigue is defined as a composite of two measurements: burnout (sustained employment-related stress that compromises an individual’s desire to work) and secondary trauma (the development of traumatic symptoms resulting from the protracted exposure to the suffering of others) [ 12 , 13 ]. An individual experiencing compassion fatigue has a reduced ability for showing compassion to others, resulting from the prolonged exposure to witnessing the suffering of others without being able to relieve one’s anguish despite having the desire to do so [ 9 ]. Individuals experiencing compassion fatigue may express a range of behaviors such as increased work absences or declines in the ability to engage in work-related tasks such as decision-making. Burnout and secondary trauma are suggested to be mediated by compassion satisfaction—the pleasure that comes from helping behavior [ 11 , 12 ].

As the pandemic shifts from being a global health emergency to an endemic disease, there continues to be concern for HCP health and well-being [ 14 , 15 , 16 ]. The increased and chronic nature of the stress experienced during and beyond the COVID-19 pandemic has heightened HCPs risk for a range of negative psychological impacts such as depression, fearfulness, grief and post-traumatic stress disorder (PTSD) [ 17 ]. Prior infectious disease outbreaks (SARS-CoV-1, H1N1, MERS-CoV, Ebola) are also associated with an increased prevalence of declining mental health in HCPs [ 18 ]. A growing body of research on the COVID-19 pandemic highlights the range of psychological symptoms HCPs developed following their sustained exposure to COVID-19 including burnout, feelings of isolation, insomnia, grief, emotional exhaustion, depression, post-traumatic stress and depersonalization, some of which have persisted over time [ 14 , 17 , 19 , 20 , 21 , 22 ]. The consequences of HCPs’ declining psychological health and well-being has had impacts on the quality of patient care and indirectly on patient outcomes through inadequate staffing [ 18 ]. Compromises in HCPs’ ability to provide optimal clinical care can have serious consequences, including the worsening of patient conditions and the increased transmission of the infection from patients to others in the hospital [ 18 ]. In addition, compassion fatigue may be exacerbated by the COVID-19 pandemic, potentially leading to moral injury, decreased productivity, increased turnover, and reduced quality of care [ 23 ]. Moreover, a growing body of literature suggests that challenges across health systems will persist although COVID-19 is no longer a global health emergency [ 24 , 25 ]. As such, it is important to have a fulsome understanding of COVID-19’s toll on HCPs and tailor health system strategies accordingly.

As health care systems continue to experience a health human resources crisis, it is important to identify and understand the prevalence of compassion fatigue, identify contributing factors, and increase understanding of the consequences and actions that can be taken to address compassion fatigue among HCPs. While there has been in an increase in the body of published literature on the health and well-being of HCPs since the onset of the COVID-19 pandemic, there continues to be a knowledge gap mapping the incidence of compassion fatigue, its resultant impact on HCP well-being, and its potential influence on patient care provision [ 11 , 17 ]. A comprehensive review of the literature on compassion fatigue among HCPs can inform policy and practice initiatives to improve the current health human resources crisis experienced by many health systems. It may also aid in identifying prospective research foci.

The purpose of this scoping review was to synthesize and provide a synopsis of the literature on compassion fatigue among HCPs during the COVID-19 pandemic and to understand its broader impact. The review was guided by the following question: What is the current state of knowledge on compassion fatigue among HCPs over the course of COVID-19?

Project registration

This scoping review was registered under Open Science Framework. A project outline was submitted including the study hypotheses, design, and data collection procedures. The DOI for the registered project is as follows: https://doi.org/10.17605/OSF.IO/F4T7N . In addition, a scoping review protocol for this review has been published in a peer-reviewed journal ( https://doi.org/10.1136/bmjopen-2022-069843 ).

Study design

A systematic scoping review strategy was chosen to explore the existing body of literature pertaining to the research topic. The objective of a scoping review is to identify relevant literature on a given topic, without focusing on evaluating research quality or conducting a thorough analysis of selected studies, as systematic reviews typically do. Current gaps in research and directions for future research can be identified by means of summarizing emerging literature on compassion fatigue in HCPs.

The current scoping review used two methodological tools, namely the Arksey and O’Mally scoping review framework as well as the Joanna Briggs Institute Critical Appraisal Tools. The Arksey and O’Malley framework comprises five stages, which include: (1) formulating the research question; (2) identifying relevant studies; (3) selecting studies for inclusion; (4) extracting and organizing the data; and (5) collating, summarizing, and reporting the findings [ 26 ]. While scoping reviews typically do not require article appraisal, all articles were evaluated by one author (CO) using the methodology established by the Joanna Briggs Institute (JBI) to enhance the overall quality of the review [ 27 ]. No articles were excluded based on their quality, in accord with the Arksey and O’Malley framework [ 26 ].

Stage I: Identifying the research question(s)

The research objective and question were drafted by the authors (AG, LH, CO, SB) and can be found in the previous section under “Research aim”.

Stage II: Identifying relevant studies

As outlined by the JBI methodology, a three-step approach was used to identify relevant studies. These steps include: (1) conducting a preliminary search of at least two suitable databases; (2) identifying relevant keywords and index terms to perform a secondary search across all chosen databases; and (3) manually examining the reference lists of the included articles to discover additional relevant studies [ 28 ]   (p11) .

Preliminary literature search

To establish the criteria for inclusion and exclusion, an initial and restricted search was conducted on the subject of interest. The preliminary literature exploration encompassed three scholarly electronic databases: MEDLINE (Ovid), Scopus, and Web of Science. The search employed the keywords “compassion fatigue” and incorporated the timeframe March 1, 2020, to June 15, 2022, so that the most impactful waves of the COVID-19 pandemic were represented in the included literature, resulting in 1519, 2489, and 2246 studies, from the respective databases. These three databases were selected due to their likelihood of yielding results relevant to the research topic. To construct a comprehensive search strategy, a collection of keywords and index terms were identified from the titles and abstracts of relevant articles. The search strategy was further refined in collaboration with a social science librarian.

Structured search strategy

A systematic search was conducted across six scholarly electronic databases: MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, and Web of Science. These databases were deliberately chosen to encompass a broad range of relevant findings within the current knowledge landscape regarding the research topic. The systematic search of the literature commenced once the scoping review was peer reviewed and revisions were addressed by the authors. Using the selected vocabulary and Boolean connectors as shown in Table 1 , a string of relevant search terms was developed. The search strategy was adapted accordingly for each individual database (e.g., Medical Subject Headings [MeSH] terms for MEDLINE [Ovid]). In the final stage of the search strategy, the reference lists of all included studies were manually examined to identify additional relevant studies.

Inclusion criteria

The inclusion criteria for this review was formulated using the PCC (Population, Concept, Context) mnemonic developed by JBI (Table 1 ). The participants included in this review were HCPs who were employed across healthcare systems during the COVID-19 pandemic (e.g., physicians, registered nurses, nurse practitioners, physician assistants, and licensed clinical social workers). The concept explored in this review focused on compassion fatigue among HCPs working in healthcare systems during the COVID-19 pandemic. The context of the study encompassed various care settings where HCPs carry out their professional activities across different clinical specialties (e.g., surgery, critical care, palliative care), as well as clinical settings (e.g., inpatient and outpatient). For the purposes of this scoping review, formal healthcare settings were broadly classified as those that provided health services and were situated within and administered by healthcare institutions.

This scoping review only included articles published in English. A time filter was applied to encompass studies conducted between 2020 to 2023, spanning the period from the onset of the COVID-19 pandemic to the present. A range of study designs were included in the review (i.e., experiments, quasi-experimental studies, analytical observational studies, descriptive observational studies, mixed-methods studies, and qualitative studies).

Exclusion criteria

Through the past two decades, compassion fatigue has been defined in different ways, sometimes being considered synonymous with burnout and secondary traumatic stress, or as an outcome resulting from both components [ 12 , 13 ]. Yet recently, it has been suggested that compassion fatigue is a focal concept related to the management of traumatic situations whereas burnout is a general concept that may have multiple contributors [ 26 ]. Due to the conceptual ambiguity surrounding compassion fatigue, articles that solely examine the components of compassion fatigue, such as burnout and secondary trauma, without directly addressing compassion fatigue itself, were excluded from consideration.

Studies that failed to meet the inclusion criteria or lacked full-text availability were excluded from the review. Additionally, editorials, letters to the editor, commentaries, and reviews were also excluded as they did not offer sufficient information for addressing the research questions.

Stage III: Study selection

After the full database searches were conducted, all identified citations were compiled and uploaded into Covidence. Any duplicate citations were automatically excluded.

Three reviewers (LH, CO, AG) independently screened the titles and abstracts of the identified studies to assess their eligibility according to the pre-established inclusion and exclusion criteria. Subsequently, the full texts of 736 selected studies were evaluated to arrive at the final list of articles for data extraction. The reasons for excluding specific studies were documented. Throughout the process, any disagreements that arose at each stage of study selection were resolved through discussions with a third reviewer (AG, SB).

The outcomes of the study selection process were presented in a flow diagram adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines (Fig.  1 ) [ 29 ]. Additionally, all the included studies underwent an assessment of their risk of bias (quality) using established critical appraisal tools from the Joanna Briggs Institute (JBI) for Evidence Synthesis [ 30 ]. Although not mandatory for scoping reviews, appraisals of study quality will contribute to the subsequent implications and future steps stemming from this scoping review [ 31 ]. The JBI provides critical appraisal checklists for various study designs, encompassing experimental, quasi-experimental, randomized controlled trials, observational, and qualitative study designs. One reviewer (CO) conducted the assessments of all the included studies, and a second reviewer (AG) verified the evaluations. Any discrepancies that arose were discussed and resolved in consultation with both reviewers. In line with the methodology of scoping reviews, no studies were excluded based on their quality assessments, ensuring a comprehensive understanding of the current state of the literature on compassion fatigue among HCPs during the COVID-19 pandemic. A summary of the quality assessments were presented in the results section of the review, while the full appraisals can be found in Additional file 1 .

PRISMA flow chart [ 28 ]

Stage IV: Data extraction

To facilitate data extraction aligned with the research objectives, a data-extraction template was developed by one reviewer (LH). This template encompassed various aspects of the included studies (i.e., authors, publication year, study populations, country, study design, aims, sample size, assessment instruments, risk factors, protective factors, consequences of compassion fatigue, and measures to prevent/manage/reduce compassion fatigue). Utilizing Covidence, two independent reviewers (LH, CO) extracted the relevant data from the studies included in the final list of citations.

Stage V: Risk of bias

Standardized tools developed by the Joanna Briggs Institute for respective study types were used to assess risk of bias (quality) for all studies included in the review [ 27 ]. The study appraisals were conducted by one reviewer (CO) and reviewed by another reviewer (AG). Any discrepancies were discussed and resolved together. While no studies were excluded based on the appraisal scores to ensure a comprehensive presentation of the available literature on compassion fatigue among healthcare providers, the findings for the risk of bias assessments are summarized in the results section and the full appraisals are presented in Additional file 1 .

Stage VI: Collating, summarizing, and reporting the results

To summarize and synthesize the findings, the study followed a three-step approach proposed by Levac et al. [ 32 ]: (1) collating and analyzing the collected data; (2) reporting the results and outcomes to address the study objectives; and (3) discussing the potential implications that findings hold for future research and policy considerations [ 31 ]. The review process adhered to the PRISMA Extension for Scoping Reviews checklist, which provided guidance for conducting the review and reporting the findings [ 26 ].

Search results

Figure  1 displays the PRISMA-ScR flowchart of the scoping review search strategy. The search and reference list initially yielded 11,715 studies. Of these, 5769 were excluded as duplicates. Following the title and abstract screening of the remaining studies, 5179 studies were excluded as they met the exclusion criteria. Finally, the full-texts of the remaining 736 studies were screened, and 712 were excluded as they did not meet the inclusion criteria. In total, 24 eligible studies were included in the review for further analysis.

Risk of bias of included studies

The complete assessment of risk of bias of all 24 included studies is available in Additional file 1 . Within the two mixed-methods studies risk of bias primarily stemmed from the quantitative strand of the studies with a lack of clarity provided about study inclusion criteria, study setting, and identification of confounding factors [ 29 ]. Other sources of bias in other quantitative studies were vagueness around the criteria used for outcome measurement [ 30 ] and only one study identified potential cofounding factors along with strategies to manage them [ 31 ]. Further shortcomings related to the failure to provide transparency around the use of valid and reliable outcome measures [ 23 , 31 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 ]. Within qualitative studies not all provided information about the researchers’ theoretical stance [ 29 , 41 , 43 ] and two studies did not provide documentation of ethics approval for the conducted research [ 43 , 44 ]. One included case report met most assessment criteria for risk of bias although more description of assessment, post-assessment condition and adverse events were warranted [ 45 ].

Characteristics of studies

Study characteristics are presented in Table 2 . Of the 24 eligible studies, 18 studies used quantitative methods [ 23 , 30 , 31 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 46 , 47 , 48 , 49 , 50 , 51 ], 3 studies used qualitative methods [ 43 , 44 , 45 ], and the remaining studies used mixed-methods approaches [ 29 , 41 , 52 ]. Additionally, 13 studies focused on the antecedents of compassion fatigue [ 23 , 29 , 33 , 34 , 35 , 36 , 40 , 41 , 42 , 45 , 46 , 47 , 48 ] and 5 studies examined the consequences of compassion fatigue [ 30 , 37 , 43 , 44 , 49 ]. Six studies were conducted in the United States, with the others being conducted in a range of countries including Ecuador, Spain, United Kingdom, Italy, Greece, Turkey, Iran, Uganda, Taiwan, Japan, Philippines, China, and India. These studies primarily focused on nurses, physicians, and other allied health professionals. The study samples included both male and female HCPs. Only one study focused exclusively on female HCPs [ 43 ].

A variety of assessment tools were used to measure compassion fatigue across included studies. Common tools included Compassion Fatigue Short Scale (CFSS) [ 33 , 47 , 48 ], Compassion Fatigue Scale (CFS) [ 30 , 49 ], Professional Quality of Life Scale Version 5 (ProQoL 5) [ 23 , 29 , 29 , 31 , 35 , 36 , 38 , 39 , 40 , 41 , 42 , 50 , 51 ], Work-Related Quality of Life Scale (WRQoL) [ 46 ], and Compassion Fatigue and Satisfaction Self-Test (CFST) [ 37 , 52 ] (Table 3 ).

The time period of the study period shows that most of the studies were conducted in the first six months of 2020, coinciding with the World Health Organization’s declaration of the COVID-19 outbreak as a pandemic [ 54 ]. No studies included in the review were conducted between March 2021 and May 2023 (Fig.  2 ).

The time trend of study periods on compassion fatigue in HCPs during the COVID-19 pandemic

Findings were synthesized and presented using the following 4 themes: (1) prevalence of compassion fatigue, (2) antecedents of compassion fatigue (individual-Level, organizational-Level, and systems-level factors), (3) consequences of compassion fatigue, and (4) interventions for compassion fatigue.

Theme 1: Prevalence of compassion fatigue

Of the studies reviewed, five measured the prevalence of compassion fatigue among HCPs during the COVID-19 pandemic [ 23 , 30 , 31 , 36 , 41 ]. In a study conducted in Spain, 306 out of 506 (60.4%) HCPs reported high levels of compassion fatigue while 170 (33.6%) showed moderate levels of compassion fatigue (ProQoL 5: M = 19.9, SD = 7.6) [ 36 ]. In a sample composed of 395 Ugandan frontline nurses, 49.11% of the nurses reported high levels of compassion fatigue, while 29.6% experienced moderate levels of compassion fatigue [ 23 ]. Over half of the nurses in the study (54.94%) reported direct exposure to COVID-19 cases. A study conducted in Greece found that in a sample of 105 nurses, the majority of nurses (51.4%) experienced moderate levels of compassion fatigue (ProQoL 5: M = 22.26, SD = 6.76) [ 41 ]. In a Taiwanese study of 503 HCPs, the majority of the participants (63.2%) experienced low levels of compassion fatigue (ProQoL 5: M = 20.9, SD = 7.6) [ 31 ]. Finally, in a Filipino sample composed of 270 frontline nurses, 61.4% of the nurses reported low levels of compassion fatigue (CFS: M = 2.213, SD = 0.979) [ 30 ].

Theme 2: Antecedents of compassion fatigue

Individual-level factors.

Age and sex were key factors associated with compassion fatigue among participant HCPs. Younger HCPs with less experience were more likely to experience mental health issues and conflicting feelings with regards to providing care to COVID-19 patients [ 23 , 29 , 44 , 46 ]. Seven studies included in the review determined that female HCPs were more likely than male HCPs to experience compassion fatigue [ 23 , 35 , 36 , 38 , 40 , 50 , 52 ]. Physicians were also reported to have higher levels of compassion fatigue compared to nurses in three studies [ 36 , 38 , 39 ]. While nursing assistants had higher levels of compassion fatigue when compared to nurses in one study (ProQol 5: Nursing assistants = 29.15 ± 6.94; Nurse = 25.68 ± 5.87) [ 29 ]. Furthermore, the risk was higher in permanent workers compared to temporary workers (ProQoL 5: Permanent = 2.48 ± 1.29; Temporary = 2.11 ± 1.15; P -value < 0.05) [ 35 ]. One included study determined that marital status and education levels were not correlated with compassion fatigue [ 23 ]. Psychiatric comorbidities such as past trauma, burnout, stress, anxiety, and depression exacerbated HCPs’ psychological well-being across a number of included studies [ 31 , 33 , 36 , 38 , 39 , 41 , 49 , 50 ]. Other psychological factors such as excessive empathetic engagement, sensitive sensory processes, and overidentification from frequent witnessing of patient suffering and deaths were found to aggravate the development of compassion fatigue [ 34 , 39 , 45 ]. The inability to cope with the rapidly evolving landscape of healthcare provision and a lack of self-care contributed to increased burden and blurring of role boundaries between professional and private lives [ 29 , 41 , 43 , 44 , 51 , 52 ]. One study that used Compassion Fatigue and Satisfaction Self-Tests and a questionnaire of personal and professional characteristics found that feelings of underappreciation, insufficient compensations, and social isolation incurred psychological burden on pediatric sub-specialists [ 52 ]. Additionally, a decrease in occupational hardiness, as measured by the Occupational Hardiness Questionnaire, increased the risk of compassion fatigue among HCPs in two studies [ 42 , 50 ]. Negative outcomes to the HCPs’ families and concerns revolving around their patients’ families also predicted higher risk of experiencing compassion fatigue [ 45 , 48 , 52 ]. Finally, HCPs’ fear of COVID-19 with regards to infection and transmission was identified as a predictor of compassion fatigue [ 29 , 40 , 43 , 44 , 47 ].

Two studies identified social support from family, friends, peers, and hospital leadership as a crucial protective factor for compassion fatigue [ 43 , 52 ]. Coping mechanisms such as venting and exercising were found to help alleviate stress among HCPs [ 44 ]. Psychological qualities such as compassion satisfaction, professional satisfaction, resilience, vigor, and hardiness were found to help protect the psychological health of HCPs as well as reducing turnover intention and increasing perceived quality of care [ 30 , 34 , 36 , 37 , 39 , 40 , 42 , 46 , 50 ]. Self-care, self-awareness of limitations, and self-regulation of emotions were crucial for reducing risk of compassion fatigue in two studies comprised of physicians and nurses [ 44 , 50 ]. Lastly, spirituality, religiosity, and meditation also served as protective factors in three studies on compassion fatigue in HCPs [ 41 , 44 , 51 ].

Organizational-level factors

In five of the articles reviewed, increased workload [ 23 , 29 , 44 , 45 ], long working hours [ 23 , 29 , 44 , 45 ], and increased number of patients [ 50 ] were identified as common predictors of compassion fatigue. Furthermore, providing direct care to COVID-19 patients, which were often emotionally challenging cases, exacerbated the psychological risks to HCPs [ 23 , 36 , 46 , 48 , 50 ]. Chronic exposure to a dynamic work environment also increased the risk of compassion fatigue among HCPs [ 29 ]. Lack of access to suitable PPEs and lack of foresight from management and human resources teams regarding infection control guidelines contributed to HCPs’ distress [ 29 ]. Adjusting to the discomfort caused by wearing PPEs presented as a challenge to maintaining the efficiency of work activities [ 29 ]. Lastly, in two studies, HCPs identified that while there were plenty of wellness resources provided by healthcare organizations to support mindfulness, there was a lack of practical and pragmatic resources for social and emotional support, work-life balance, and remuneration [ 23 , 43 ].

Positive work conditions, such as a visible presence and engagement by leadership and management, as well as a positive work culture allowing HCPs to seek help without fear of judgment was found to be important protective factors against the development of compassion fatigue [ 44 ]. The social aspects of teamwork facilitated the sharing of feelings of trauma which in turn contributed to resilience and improved psychological well-being among HCPs in three studies [ 41 , 43 , 44 ]. One study observed that workplace wellness activities and a sense of feeling valued can prevent high levels of compassion fatigue [ 52 ]. Words of appreciation from supervisors boosted morale for some HCPs [ 44 ]. Attention to workplace safety in the form of PPEs and early access to vaccines alleviated the fear of infection [ 44 ]. Finally, two studies determined that adequate preparation and education to handle COVID-19 cases and increased autonomy decreased the risk of compassion fatigue and increased professional fulfillment [ 42 , 44 ].

Systems-level factors

Significant and frequently changing public health measures over the course of the pandemic presented a challenge as they were disruptive to workflow and resulted in uncertainty, feelings of inadequacy, and distress among HCPs across a range of geographical contexts [ 29 , 41 , 43 , 49 ]. Increases in the incidence of COVID-19 cases also contributed to a rise in the number of hospital admissions, aggravating HCPs’ workload [ 35 ]. Social-distancing policies precluded informal team interactions, such as sharing meals together, which posed a risk to HCPs’ psychological well-being by decreasing social support [ 43 , 52 ]. Transitions to tele-health also increased social isolation [ 43 ]. A theme that emerged was the negative impact of stigma on HCPs, with their proximity to contagion, as a possible risk factor [ 35 , 41 ]. Aggressive behaviors and verbal abuse from patients were sources of emotional stress for some HCPs [ 44 ]. Finally, negative peer pressure was identified as a barrier to HCPs engaging in self-care as they felt pressure to conform to sociocultural norms of an expected level of dedication [ 44 ]. In contrast to the impacts of stigma, a positive perception of one’s own profession is related to increased commitment and decreased compassion fatigue [ 46 ].

Theme 3: Consequences of compassion fatigue

The findings of one study suggested that compassion fatigue associated with HCP’s professional practice impacted their private lives, predicting greater parental burnout ( r  = 0.542), child abuse ( r  = 0.468), child neglect ( r  = 0.493), spouse conflict ( r  = 0.340), and substance abuse ( r  = 0.298) [ 48 ]. This study identified factors such as direct care of COVID-19 patients ( r  = 0.255), exposure to patient death and suffering due to COVID-19 ( r  = 0.281), and family income loss due to COVID-19 ( r  = 0.366) as risk factors for compassion fatigue [ 48 ]. Additionally, at an organizational-level, two studies conducted in 2020 and 2021 observed that Turkish and Filipino HCPs who reported compassion fatigue also reported lower job satisfaction and reduced professional commitment [ 30 , 46 ]. Consequently, elevated compassion fatigue also increased organizational turnover intent among Filipino HCPs (β = 0.301, P -value = 0.001) [ 30 ]. A study conducted in China found that compassion fatigue predicted negative behavioral intentions towards treating COVID-19 patients, as measured by the Attitude, Subjective Norms, and Behavioral Intention of Nurses toward Mechanically Ventilated Patients (ASIMP) questionnaire [ 33 ]. This suggests that quality of care may be adversely impacted [ 33 ]. Finally, an American study observed that compassion fatigue among HCPs was associated with deteriorating workplace culture [ 52 ].

• Patient care

The provision of care during the pandemic was impacted by the general lack of preparation for handling novel tasks experienced by many HCPs [ 23 ]. Findings from one study found that many HCPs (73%) experienced a shift in their clinical practice setting, for example, from in-personal care to virtual telehealth consults as a result of the pandemic [ 43 ]. HCPs also experienced an increase in the need to provide palliative care as a result of the negative health impacts of COVID-19, something they may have had limited prior experience with [ 43 ]. In a case study conducted in Japan, the physician reported feeling inexperienced with handling the psychological impact of the pandemic experienced by not only the patients but also the patients’ family [ 45 ]. The consequences of not being able to provide optimal care was found to exacerbate feelings of guilt, powerlessness, and frustration in HCPs [ 41 , 43 ]. In turn, study findings suggest that worsening compassion fatigue may reduce the quality of care provided by HCPs because it has been found to be a significant predictor of negative behavioral intention [ 30 , 33 , 40 , 52 ].

Theme 4: Interventions for compassion fatigue

Two studies in Japan and Uganda investigated potential interventions to support HCPs experiencing COVID-19 related compassion fatigue. On an individual-level, regularly engaging in self-care activities such as expressions of gratitude as well as learning how to recognize signs and symptoms of compassion fatigue were identified as crucial first steps in its management [ 45 , 52 ]. Emotional support from colleagues and mental health specialists was found to be effective in improving the mental health of a Japanese physician experiencing compassion fatigue [ 45 ]. Findings of two studies identified the need for a systematic approach to monitor the progression of psychological symptoms and providing tailored resources in a timely manner to HCPs to help ameliorate compassion fatigue and its consequences [ 29 , 45 ]. Suggested strategies included: facilitating regular consultations with each department [ 45 , 52 ], increasing the staffing number of HCPs in busy departments [ 23 , 45 ], and providing PPEs and vaccines in a timely manner [ 23 , 52 ]. Lastly, findings from two studies in Uganda and the United States suggested that increased remuneration may prevent or minimize compassion fatigue [ 23 , 52 ].

Key findings

This scoping review sought to provide a comprehensive summary of the literature published between January 2020 and May 2023 on the impact of the COVID-19 pandemic on compassion fatigue among HCPs and its subsequent impact on patient care. Most of the included studies were conducted in 2020 and used cross-sectional study designs. Given that the COVID-19 outbreak was declared a global health emergency in early 2020 [ 1 ], cross-sectional study designs were well-placed to provide prompt and important insights on compassion fatigue across the HCP population. Review findings were presented using four themes addressing the prevalence, antecedents, consequences, and consequences of compassion fatigue in HCPs. The prevalence of compassion fatigue was observed to vary across countries. The negative psychological outcomes reported by included studies were precipitated by individual-level factors such as age and occupational role; organizational-factors such as lack of access to PPE; and systems-level factors such as loss of social engagement and stigma. The consequences of compassion fatigue impacted HCPs’ personal and professional roles. Findings suggest an urgent need for policy makers, health managers, and team leaders to develop and implement strategies that target the potential root causes of compassion fatigue in HCPs.

Prevalence of compassion fatigue

Among the five studies that measured prevalence of compassion fatigue, results were highly variable across countries [ 23 , 30 , 31 , 36 , 41 ]. This may be attributed to differences in preparedness for infection containment and variability among health systems’ preparation and ability to respond to supply chain issues [ 53 ]. Taiwan provides an example of how digital technologies were adopted to improve disease surveillance and monitor medical supply chains [ 55 ]. Using the stringent Identify-Isolate-Inform model in conjunction with public mask-wearing and physical distancing, the spread of the disease was effectively contained in Taiwan [ 53 ]. Consequently, despite not enforcing lockdowns, Taiwan blocked the first wave of cases and slowed down subsequent outbreaks, which may contribute to the observed low prevalence of compassion fatigue among HCPs [ 56 ]. In the Philippines, responses to disease outbreaks varied across different municipalities and provinces [ 57 ]. Effective containment measures such as strict border control and early lockdowns in addition to plentiful medical supplies and personnel allowed certain regions to mount a strong response to this public health emergency, subsequently resulting in the observed low prevalence of compassion fatigue among HCPs [ 57 ]. In Uganda, there were generally low levels of preparedness with regards to the infection identification, PPE supply, access to hand-washing facilities, and establishment of isolation facilities [ 58 ]. This may have contributed to an overwhelmed healthcare system and overworked HCPs as the surge of cases was exacerbated by the shortage of disease containment resources [ 58 ]. In April 2020, Spain experienced the second highest infection incidence in the world [ 59 ]. The Spanish health system was overwhelmed by the abundance of patients due to lack of HCPs [ 60 ], hospital capacity, and material supplies [ 59 ]. An increase in compassion fatigue among HCPs was also observed in recent studies from Italy and Canada [ 61 , 62 ]. Overall, the various strategies used to address the resultant COVID-19-related public health crisis presented distinctive challenges to HCPs in different countries. Caution must be taken when interpreting the study findings given the contextual differences across various healthcare systems. The psychological burden and prevalence of compassion fatigue subsequently varied depending on the context.

Antecedents of compassion fatigue

The findings of this review suggest that individual characteristics such as age and occupational role are significant contributing factors to the development of compassion fatigue during COVID-19 [ 63 ]. Specifically, older HCPs were less likely to experience compassion fatigue than younger HCPs according to regression analyses [ 23 , 29 , 44 , 46 ]. This observation may be attributed to their increased work experience. Resilience was also positively linearly related to age [ 64 ]. Factors identified as potential contributors to the observed age-related advantage in wellbeing were access to job resources, better job security, work-life balance, and coping skills [ 64 ]. The compounding of stressors such as an increase in workload during the COVID-19 pandemic could have exacerbated the psychological health of younger HCPs. In the context of telework, older employees tended to create clear boundaries between work and non-work responsibilities [ 64 ]. The rise in telework among HCPs was mostly a consequence of the COVID-19 pandemic which may have increased the psychological burden on younger HCPs [ 65 ]. In addition, a study examining demographic predictors of resilience in nurses reported that younger nurses had less exposure to stress, and thus have fewer opportunities to develop skills in stress management [ 66 ]. As a result of these factors, the younger HCPs were at high risk for compassion fatigue during the COVID-19 pandemic. Interestingly, three of the included studies in this review also observed that physicians were at a higher risk of compassion fatigue compared to nurses [ 36 , 38 , 39 ]. This difference may be attributed to the burden of responsibility in relation to breaking bad news, a task that is often the physicians’ responsibility [ 67 ]. A study examining compassion fatigue in HCPs determined that conflict arising during patient interactions placed HCPs at a risk for compassion fatigue [ 68 ]. Delivery of bad or uncertain news also predicted a greater mental health burden in HCPs [ 68 ].

At the organizational level, findings from the studies included in this review identified that a lack of access to PPE was a contributor to compassion fatigue in HCPs during COVID-19 [ 29 , 52 ]. Specifically, one study reported that the fear of infection and transmission to patients, family, and friends added to the concern of HCPs working in high-risk environments [ 69 ]. This finding can potentially be explained by the increased vulnerability that HCPs experience following a lag in the provision of PPE. Several organizational factors were determined as potential barriers to the distribution of PPE; the unprecedented nature of the pandemic presented challenges for maintaining domestic inventories [ 70 ]. Disruptions to the PPE global supply chain also amplified the equipment shortage [ 70 ]. This finding highlights the importance of monitoring and ensuring that domestic health supplies are adequately stocked.

At the system level, loss of social engagement [ 43 , 52 ] and stigma [ 35 , 41 ] were identified in the studies included in the review as antecedents to compassion fatigue. Public policies such as social-distancing and occupancy capacity limits negatively impact social interactions which may explain the loss of social engagement in addition to worsening mental health well-being in HCPs [ 71 ]. As certain practices transition to telehealth, other studies have found increased mental fatigue and difficulty with maintaining empathetic rapport, which has important implications on patient care [ 72 , 73 ]. In addition, other studies have found that given the proximity of their role to contagion, stigma towards HCPs from patients increased during COVID-19 [ 74 , 75 ]. Consequently, the combinatorial experience of being socially isolated and stigmatized may worsen mental health outcomes [ 76 ]. This points to a need for increased access to support services for HCPs such as virtual communities.

Consequences of compassion fatigue

Review findings suggest that compassion fatigue impacted the private and professional lives of HCPs. The risk for parental burnout has increased across many occupations during the pandemic [ 77 ]. Factors related to low levels of social support, lack of leisure time, and greater parental responsibilities in face of education disruptions adds to the psychological burden of parents [ 77 ]. HCPs were placed in a unique position having to work in highly stressful environments while also balancing household responsibilities and increased challenges related to childcare [ 48 , 78 ]. This finding highlights a need for the provision of child support services for HCPs or a reduction in workload to alleviate the burden of parental and homecare responsibilities particularly in times of public health crises.

Beyond their private lives, this review has found that decreases in HCPs’ professional commitment due to compassion fatigue, may endanger the quality of patient care delivered [ 79 ]. In particular, this may be attributed to the surge in palliative care cases during the pandemic in conjunction with an unprepared workforce, creating psychological stress for HCPs [ 80 ]. In a study examining palliative care preparedness during the pandemic, a lack of core palliative care training and expertise among frontline HCPs [ 81 ] meant many felt emotionally unprepared to address cases with seriously ill patients [ 45 ]. An increased frequency of breaking bad news to patients’ families was associated with negative psychological outcomes [ 82 ]. Providing training on relevant communication skills may protect HCPs from compassion fatigue [ 83 , 84 ].

Implications

The findings of this review highlight the urgency to provide support for HCPs who may be at risk for compassion fatigue which could have subsequent impacts on the provision of patient care [ 85 ]. To address the antecedents of compassion fatigue, this scoping review has identified a need for increased staffing, recruitment, and retention efforts on the part of hospital human resources departments [ 23 , 45 ]. Interventions suggested by studies included in the review encompass the monitoring of psychological well-being among HCPs to inform timely provision of resources [ 29 , 45 ]. Specifically, structured debriefing, training on self-care routine, reduced workload, and normalization of trauma-related therapy are essential interventions [ 86 ]. Additionally, a study identified that fostering collaborative workplace culture encourages social and emotional support among staff [ 45 ]. Certain hospitals have adopted “wobble rooms” as a private unwinding and venting space for employees [ 87 ]. Studies have observed that interventions aimed at improving the well-being of HCPs resulted in enhanced quality and safety of care being delivered [ 75 ].

Strengths and limitations

There are both strengths and limitations in this review. Although some literature reviews focused on the psychological health status of HCPs (e.g., burnout, anxiety, depression), very few studies have specifically explored compassion fatigue. Reviews that considered the impact of the COVID-19 pandemic on HCPs were even more limited. It is known that compassion is a cornerstone of quality health care improvement and increases successful medical outcomes [ 88 , 89 , 90 ]. Nevertheless, prolonged exposure to distressing events by HCPs, such as patient death and suffering, results in the absorption of negative emotional responses and leads to the development of compassion fatigue [ 91 ]. This scoping review presents an extensive exploration of the current body of literature on compassion fatigue among HCPs during the COVID-19 pandemic. Another strength in this study lies in the transparency and reproducibility of the methodology. The scoping review protocol has been published in a peer-reviewed journal to establish high methodological standards for the final scoping review [ 92 ]. Additionally, the study plan was pre-registered with Open Science Framework to ensure commitment to the methodology. Double extraction was performed to ensure that a comprehensive descriptive summary of the studies was achieved.

Some limitations include the short time frame chosen for the included studies that were published since the COVID-19, which may have constrained the breadth and quality of the studies. Longitudinal studies may not be captured in the review as this study methodology requires a prolonged period of time to yield meaningful observations. More data is needed to support conclusions on the impact of compassion fatigue on patient care. Additionally, none of the studies included in the review were conducted between March 2021 and May 2023, which may miss out on meaningful trends in levels of compassion fatigue in HCPs. This scoping review only included literature published in English so studies published in other languages were not assessed. Additionally, no comparisons of compassion fatigue were made among the HCP groups in spite of potentially relevant differences such as patient exposure. There was also a lack of allied health profession representation, with the majority of the study population being nurses or physicians. Lastly, grey literature was not included in this scoping review which may delimitate the information included in the scoping review.

There were recurring themes related to limitations in the included research studies. Several studies identified sampling issues including small sample sizes, restricted sample frame, low response rate, and selection error [ 23 , 29 , 31 , 38 , 39 , 40 , 41 , 42 , 43 , 47 , 50 , 51 , 83 ]. Other studies have called for investigations into how different sociodemographic factors, other psychiatric diseases, health care settings, and workplace environment impact compassion fatigue in HCPs [ 38 , 39 , 47 , 48 , 83 ]. One study observed a lack of homogeneity in the sample due to an overrepresentation of female HCPs in the sample [ 38 ]. Lastly, many studies employed a cross-sectional study design which limits the interpretation of the data in terms of causality [ 23 , 30 , 31 , 34 , 42 , 47 , 48 , 50 ]. While there are limitations to the study, a comprehensive summary of existing literature may be useful to inform future research and policies.

Future research is needed to examine the longitudinal impacts of COVID-19 on compassion fatigue in HCPs. Moreover, research in this area could be strengthened by including a consultation phase with external experts on compassion fatigue to improve the robustness of the scoping review.

Conclusions

The COVID-19 pandemic presented a unique set of challenges to healthcare systems across the globe. This scoping review indicated that the prevalence of compassion fatigue was inconsistent across countries and may reflect the variability of pandemic preparedness among the individual countries. Primary risk factors for the development of compassion fatigue included being younger, female, a physician or nurse, and having limited access to PPE in conjunction with an excessive workload and prolonged work hours. The negative impacts of compassion fatigue were experienced at the individual and organizational level. The findings suggest there is a systemic need to assess, monitor and support health professionals’ well-being particularly during conditions of protracted health crises such as a pandemic. In addition, many health systems and sectors are facing a profound health human resources crisis and therefore ongoing efforts must be made to improve workplace environments and increase recruitment and retention efforts. Lastly, pandemic planning must include provisions to support health providers’ ability to safely do their jobs while also minimizing negative impacts to their health and well-being.

Availability of data and materials

All the material presented in the manuscript is owned by the authors and/or no permissions are required.

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Arts and creativity interventions for improving health and wellbeing in older adults: a systematic literature review of economic evaluation studies

• Grainne Crealey 1 ,
• Laura McQuade 2 ,
• Roger O’Sullivan 2 &
• Ciaran O’Neill 3  

BMC Public Health volume  23 , Article number:  2496 ( 2023 ) Cite this article

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As the population ages, older people account for a larger proportion of the health and social care budget. A significant body of evidence suggests that arts and creativity interventions can improve the physical, mental and social wellbeing of older adults, however the value and/or cost-effectiveness of such interventions remains unclear.

We systematically reviewed the economic evidence relating to such interventions, reporting our findings according to PRISMA guidelines. We searched bibliographic databases (MEDLINE, EMBASE, Econlit and Web of Science and NHSEED), trial registries and grey literature. No language or temporal restrictions were applied. Two screening rounds were conducted independently by health economists experienced in systematic literature review. Methodological quality was assessed, and key information extracted and tabulated to provide an overview of the published literature. A narrative synthesis without meta-analysis was conducted.

Only six studies were identified which provided evidence relating to the value or cost-effectiveness of arts and creativity interventions to improve health and wellbeing in older adults. The evidence which was identified was encouraging, with five out of the six studies reporting an acceptable probability of cost-effectiveness or positive return on investment (ranging from £1.20 to over £8 for every £1 of expenditure). However, considerable heterogeneity was observed with respect to study participants, design, and outcomes assessed. Of particular concern were potential biases inherent in social value analyses.

Conclusions

Despite many studies reporting positive health and wellbeing benefits of arts and creativity interventions in this population, we found meagre evidence on their value or cost-effectiveness. Such evidence is costly and time-consuming to generate, but essential if innovative non-pharmacological interventions are to be introduced to minimise the burden of illness in this population and ensure efficient use of public funds. The findings from this review suggests that capturing data on the value and/or cost-effectiveness of such interventions should be prioritised; furthermore, research effort should be directed to developing evaluative methods which move beyond the confines of current health technology assessment frameworks, to capture a broader picture of ‘value’ more applicable to arts and creativity interventions and public health interventions more generally.

PROSPERO registration

CRD42021267944 (14/07/2021).

Peer Review reports

The number and proportion of older adults in the population has increased in virtually every country in the world over past decades [ 1 ]. In 2015, there were around 901 million people aged 60 years and over worldwide, by 2030, this will have increased to 1.4 billion [ 2 ]. An ageing population is one of the greatest successes of public health but it has implications for economies in numerous ways: slower labour force growth; working-age people will have to make greater provisions in welfare payments for older people who are no longer economically active; provisions for increased long-term care; and, society must adjust to the changing needs, expectations and capabilities of an expanding group of its citizens.

The Covid-19 pandemic shone an uncompromising light on the health and social care sector, highlighting the seriousness of gaps in policies, systems and services. It also focused attention on the physical and mental health consequences of loneliness and social isolation. To foster healthy ageing and improve the lives of older people, their families and communities, sustained and equitable investment in health and wellbeing is required [ 3 ]. The prevailing model of health and social care which is based ostensibly on formal care provision is unlikely to be sustainable over the longer term. New models, which promote healthy ageing and recognise the need for increasing reliance on self-care are required, as will be evidence of their effectiveness, cost-effectiveness and scalability.

Arts and creativity interventions (ACIs) can have positive effects on health and well-being, as several reviews have shown [ 4 , 5 ]. For older people, ACI’s can enhance wellbeing [ 6 , 7 , 8 , 9 ], quality of life [ 10 , 11 ] and cognitive function [ 12 , 13 , 14 , 15 , 16 ]. They can also foster social cohesion [ 17 , 18 , 19 ] and reduce social disparities and injustices [ 20 ]; promote healthy behaviour; prevent ill health (including enhancing well-being and mental health) [ 21 , 22 , 23 , 24 , 25 ], reducing cognitive decline [ 26 , 27 ], frailty [ 28 , 29 , 30 , 31 , 32 , 33 ] and premature mortality [ 34 , 35 , 36 , 37 , 38 ]); support people with stroke [ 39 , 40 , 41 , 42 ]; degenerative neurological disorders and dementias and support end of life care [ 43 , 44 ]. Moreover, ACIs can benefit not only individuals, but also others, such as supporting the well-being of formal and informal carers, enriching our knowledge of health, and improving clinical skills [ 4 , 5 ].

The benefits of ACIs have also been acknowledged at a governmental level by those responsible for delivering health and care services: The UK All-Party Parliamentary Special Interest group on Arts, Health and Wellbeing produced a comprehensive review of creative intervention for health and wellbeing [ 45 ]. This report contained three key messages: that the arts can keep us well, aid recovery and support longer better lived lives; they can help meet major challenges facing health and social care; and that the arts can save money for the health service and social care.

Despite robust scientific evidence and governmental support, no systematic literature review has collated the evidence with respect to the value, cost or cost-effectiveness of such interventions. Our objective was to assess the economic impact of ACIs aimed at improving the health and wellbeing of older adults; to determine the range and quality of available studies; identify gaps in the evidence-base; and guide future research, practice and policy.

A protocol for this review was registered at PROSPERO, an international prospective register of systematic reviews (Registration ID CRD42021267944). We used pre-determined criteria for considering studies to include in the review, in terms of types of studies, participant and intervention characteristics.

The review followed the five-step approach on how to prepare a Systematic Review of Economic Evaluations (SR-EE) for informing evidence-based healthcare decisions [ 46 , 47 , 48 ]. Subsequent to developing and registering the protocol, the International Society for Pharmacoeconomic Outcomes and Research (ISPOR) published a good practice task force report for the critical appraisal of systematic reviews with costs and cost-effectiveness outcomes (SR-CCEOs) [ 49 ]. This was also used to inform the conduct of this review.

Eligibility criteria

Full economic evaluations are regarded as the optimal type of evidence for inclusion in a SR-EE [ 46 ], hence cost-minimisation analyses (CMA), cost-effectiveness analyses (CEA), cost-utility analyses (CUA) and cost–benefit analyses (CBA) were included. Social value analyses were also included as they are frequently used to inform decision-making and commissioning of services within local government. Additionally, they represent an important intermediate stage in our understanding of the costs and consequences of public health interventions, where significant challenges exist with regard to performing full evaluations [ 50 , 51 , 52 , 53 ].

Development of search strategies

The population (P), intervention (I), comparator (C) and outcomes (O) (PICO) tool provided a framework for development of the search strategy. Studies were included if participants were aged 50 years or older (or if the average age of the study population was 50 years or over). Interventions could relate to performance art (dance, singing, theatre, drama etc.), creative and visual arts (painting, sculpture, art making and design), or creative writing (writing narratives, poetry, storytelling). The intervention had to be active (for example, creating art as opposed to viewing art; playing an instrument as opposed to listening to music). The objective of the intervention had to be to improve health and wellbeing; it had to be delivered under the guidance of a professional; delivered in a group setting and delivered on more than one occasion. No restrictions were placed on the type of comparator(s) or the type of outcomes captured in the study. We deliberately limited the study to professionally led activities to provide a sharper distinction between social events where arts and creativity may occur and arts and creativity interventions per se. We set no language restriction nor a restriction on the date from which studies were reported.

Search methods

PRESS (peer-review electronic search strategies) guidelines informed the design our search strategy [ 54 , 55 ] and an information specialist adapted the search terms (outlined in Table S 1 ) for the following electronic bibliographic databases: MEDLINE, PubMed, EMBASE, Econlit and Web of Science and NHSEED. We also inspected references of all relevant studies; and searched trials registers (ClinicalTrials.gov). Search terms used included cost, return on investment, economic, arts, music, storytelling, dancing, writing and older adult as well as social return on investment (SROI). The last search was performed on 09/11/2022. As many economic evaluations of ACIs (especially SROIs) are commissioned by government bodies or charitable organisations, a search of the grey literature was undertaken.

Handling searches

A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow chart was used to document study selection, illustrating the numbers of records retrieved and selection flow through the screening rounds [ 56 , 57 , 58 ]; all excluded records (with rationale for exclusion) were documented.

Selection of studies

Two screening rounds were conducted independently by two health economists experienced in undertaking reviews (GC, CO’N). The first round screened the title and abstract of articles based on the eligibility criteria; those selected at this stage entered a second round of full text screening with eligibility based on the inclusion and exclusion criteria. Any disagreements were discussed among the two reviewers, with access to a third reviewer available to resolve disagreements, though this proved unnecessary.

Data extraction and management

Two reviewers extracted relevant information independently using an proforma developed specifically for the purposes of this study, which included all 35 items suggested by Wijnen et al. (2016) [ 48 ]. Information was extracted in relation to the following factors: (1) general information including study title, author, year, funding source, country, setting and study design; (2) recruitment details, sample size, demographic characteristics (age, gender) and baseline health data (diagnosis, comorbidities); (3) interventions, effectiveness and cost data; (4) type of economic evaluation, perspective, payer, beneficiary, time horizon, measure of benefit and scale of intervention; (5) quality assessment, strength of evidence, any other important information; (6) results; (7) analysis of uncertainty and (8) conclusions. The quality assessment/risk of bias checklists were included in the data extraction proforma, and picklists were used to enhance uniformity of responses. The data extraction form was piloted by two reviewers (GC and CON) on one paper and discussion used to ensure consistent application thereafter.

Assessment of study quality

Two reviewers (GC & CON) independently assessed study quality, with recourse to a third reviewer for resolution of differences though this proved unnecessary. Quality assessment was based on the type of economic evaluation undertaken. Full and partial trial-based economic evaluations were assessed using the CHEC-extended checklist [ 59 ]. SROI analyses were assessed using a SROI-specific quality framework developed for the purpose of systematic review [ 60 ].

Data analysis methods

Due to the small number of evaluations detected, possible sources of heterogeneity and a lack of consensus on appropriate methods for pooling cost-effectiveness estimates [ 61 ] a narrative synthesis analysis was undertaken.

Database searches returned 11,619 records; from this, 402 duplicates were removed leaving 11,214 reports. From these 113 reports were assessment against the inclusion and exclusion criteria resulting in 4 studies for inclusion in the review. Over 40 websites were searched for relevant content returning 2 further studies for inclusion. The PRISMA 2020 diagram is presented in Fig.  1 . A high sensitivity search strategy was adopted to ensure all relevant studies were identified, resulting in a large number of studies being excluded at the first stage of screening.

PRISMA 2020 flow diagram for new systematic reviews which include searches of databases, registers and other sources

A total of six studies were identified; key characteristics are presented in Table 1 . Identified studies were published between 2011 and 2020. Two studies used a health technology assessment (HTA) framework alongside clinical trials [ 62 , 63 ] to assess the cost-effectiveness of community singing interventions. Both evaluations scored highly on the CHEC-extended checklist (Table 2 ), with findings reported in line with the CHEERS (Consolidated Health Economic Estimation Reporting Standards) checklist 2022 [ 64 ].

Four further studies employed an SROI framework to assess art and/or craft interventions: two studies were published in the peer-reviewed literature [ 65 , 66 ] and a further two in the grey literature [ 67 , 68 ]. All four adhered closely to the suggested steps for performing an SROI and consequently secured high scores (Table 3 ). No quality differential was discerned between those studies published in the academic literature when compared with those from the grey literature.

Five of the studies were undertaken in the UK [ 63 , 66 , 67 , 68 , 69 ] and one in the US [ 63 ]. Four of the studies were designed for older adults with no cognitive impairment [ 62 , 63 , 67 , 68 ]; one was designed for participants with or without dementia [ 65 ], and another was specifically for older adults with dementia and their caregivers [ 66 ]. Three of the studies were delivered in a community setting [ 62 , 63 , 67 ], two in care homes [ 65 , 68 ] and one across a range of settings (hospital, community and residential) [ 66 ]. The length and duration of the ACIs varied; some lasted 1–2 h (with multiple classes available to participants) [ 65 ], whereas others were structured programmes with sessions lasting 90 min over a 14-week period [ 62 ]. The number of participants included in studies varied; the largest study contained data from 390 participants [ 63 ], whereas other studies measured engagement using numbers of care homes or housing associations included [ 67 , 68 ].

Costs were captured from a narrower perspective (i.e., the payer—health service) for those economic evaluations which followed a health technology assessment (HTA) framework [ 62 , 63 ]. Costs associated with providing the programme and health and social care utilisation costs were captured using cost diaries. Valuation of resource usage was in line with the reference case specified for each jurisdiction.

Social value analyses included in the review [ 65 , 66 , 67 , 68 ] captured a broader picture of cost; programme provision costs included were similar in nature to those identified using an HTA framework, however, the benefits captured went beyond the individual to capture costs to a wide range of stakeholders such as family members, activity co-ordinations and care home personnel. Costs were apportioned using financial proxies from a range of sources including HACT Social Value Bank [ 69 ] and market-based valuation methods.

The range of outcomes captured and valued across HTAs and SROIs was extensive: including, but not limited to, wellbeing, quality of life, physical health, cognitive functioning, communication, control over daily life choices, engagement and empowerment, social isolation, mobility, community inclusion, depressive symptoms, sadness, anxiety, loneliness, positive affect and interest in daily life. In the programmes assessed using an HTA framework, outcomes were captured using standardised and validated instruments, for both control and intervention groups across multiple time points. Statistical methods were used to assess changes in outcomes over time. Programmes assessed using SROI relied primarily on qualitative methods (such as reflective diaries and in-depth interviews) combined with routinely collected administrative data.

The evidence from the singing interventions was encouraging but not conclusive. The ‘Silver Song Club’ programme [ 62 ] reported a 64% probability of being cost-effective at a willingness-to-pay threshold of £30,000. This study was also included in the Public Health England (PHE) decision tool to support local commissioners in designing and implementing services to support older people’s healthy ageing, reporting a positive societal return on investment [ 70 ]. Evidence from the ‘Community of Voices’ trial [ 63 ] suggested that although intervention group members experienced statistically significant improvements in loneliness and interest in life compared to control participants, no significant group differences were observed for cognitive or physical outcomes or for healthcare costs.

A positive return on investment was reported by all social value analyses undertaken. The ‘Imagine Arts’ programme, reported a positive SROI of £1.20 for every £1 of expenditure [ 65 ]. A higher yield of between £3.20-£6.62 for each £1 invested was reported in the ‘Dementia and Imagination’ programme [ 66 ]. The ‘Craft Café’ programme, reported an SROI of £8.27 per £1 invested [ 68 ], and the ‘Creative Caring’ programme predicted a SROI of between £3 to £4 for every £1 spent [ 67 ]. The time period over which return on investment was calculated differed for each evaluation from less than one year to 4 years.

The primary finding from our review concerns the paucity of evidence relating to the value, cost and/or cost-effectiveness of ACIs aimed at improving health and wellbeing in this population. Despite few restrictions being applied to our search, only six studies were found which met our inclusion criteria. This is not indicative of research into ACIs in this population, as evidenced by the identification of ninety-three studies where arts and creativity interventions were found to support better health and wellbeing outcomes in another recent review [ 5 ]. An alternative explanation is that funders do not see the added value of undertaking such evaluations in this area. That is, for funders, the cost of evaluating an ACIs is likely to be deemed unjustified given the relatively small welfare loss a misallocation of resources to them might produce. While at first glance this may seem reasonable, it disadvantages ACIs in competing with other interventions for funding and arguably exposes an implicit prejudice in the treatment of interventions from which it may be difficult to extract profit in general. That is, the paucity of evidence, may reflect inherent biases within our political economy that favour the generation of marketable solutions to health issues from which value can be appropriated as profit. Pharmaceuticals are an obvious example of such solutions, where the literature is replete with examples of evaluations sponsored by pharmaceutical companies or where public funds are used to test the claims made by pharmaceutical companies in respect of the value of their products. If the potential of ACIs to improve health and well-being is to be robustly established, ACIs must effectively compete for funding with other interventions including those from pharma. This requires a larger, more robust evidence base than is currently available and investment in the creation of such an evidence base. As there is currently no ‘for-profit’ industry to generate such an evidence base, public funding of evaluations will be central to its creation.

Our second finding concerns the values reported in the meagre evidence we did find. In five of the six studies we identified, evidence indicated that ACIs targeted at older people offered value for money [ 62 , 65 , 66 , 67 , 68 ]. One study provided mixed evidence [ 63 ], however, in this study a ‘payer’ perspective was adopted when applying an HTA framework which, by virtue of the perspective adopted, excluded a range of benefits attributable to ACIs and public health interventions more generally. Among the four studies that adopted a SROI approach, estimated returns per £1 invested ranged from £1.20 to £8.27. Given the evident heterogeneity among studies in terms of context and methods, care is warranted in comparing estimates with each other or with other SROIs. Care is also required in accepting at face value the estimates reported given methodological issues that pertain to the current state of the art with respect to SROI. With these caveats in mind noted, the values reported for ACIs using the SROI approach are comparable with those from other SROI studies in other contexts including those as diverse as a first aid intervention [ 71 ], investment in urban greenways [ 72 ] and the provision of refuge services to those experiencing domestic violence [ 73 ] (a return on investment of £3.50-£4, £2.88-£5.81 and £4.94 respectively). Similarly, with respect to the study that adopted a cost-effectiveness approach, Coulton and colleagues (2015) reported a 64% probability of the intervention being cost-effective at a threshold of £30,000 [ 62 ]. Again, it is difficult to compare studies directly, but this is similar to that reported for interventions as diverse as a falls prevention initiative [ 74 ] and the treatment of depression using a collaborative approach [ 75 ] both in the UK. That the evidence base is meagre notwithstanding, there is, in other words, a prima facie case that ACIs are capable of offering value for money when targeted at older persons.

Our third finding relates to the state of the art with respect to SROIs in this area. Over the past 40 years, considerable time, effort and resources have been expended in the development of cost-effectiveness techniques in health and social care. While considerable heterogeneity can exist around their conduct, national guidance exists in many jurisdictions on the conduct of cost-effectiveness analyses (CEA) – such as the NICE reference case in the UK [ 76 ]– as well as in the reporting of these as set out in the CHEERS 2022 guidance [ 64 ]. This has helped raise the quality of published evaluations and the consistency with which they are reported. Despite the existence of a step-by-step guidance document on how to perform SROIs [ 77 ] which outlines how displacement effects, double counting, effect attribution and drop-off should be addressed, a significant body of work still remains to ensure that the methodology addresses a range of known biases in a robust manner. Where there is no comparator to the intervention being evaluated (as was the case in the SROIs reported here) it may be difficult to convince funders that the implicit incremental costs and benefits reported are indeed incremental and attributable to the intervention. Equally, where a comparator is present, greater consensus and standardisation is required regarding the identification, generation and application of, for example, financial proxies. Currently, SROI ratios combine value across a wide range of stakeholders, which is understandable if the objective is to capture all aspects of social benefit generated. This ratio, however, may not reflect the priorities and statutory responsibilities of healthcare funders. Whist all of the aforementioned issues can be addressed, investment is required to develop the SROI methodology further to more closely meet the needs of commissioning bodies.

Notwithstanding these challenges, social value analyses play a pivotal role within the procurement processes employed by government, local authorities and other non-departmental public bodies and should not be dismissed simply because the ‘burden of proof’ falls short of that required to secure remuneration within the health sector. As most SROIs are published in the grey literature, this means they often avoid peer scrutiny prior to publication and the potential quality assurance this can offer. It is noteworthy however that two of the SROIs included in this review [ 65 , 66 ] were published in the academic literature, suggesting that the academic community are engaging with this method which is to be applauded.

Moving forward, it is unlikely we will be able to meet all of the health and wellbeing needs of our ageing population solely in a primary or secondary care setting. New models of care are required, as are new models of funding to support interventions which can be delivered in non-healthcare settings. New hybrid models of evaluation will be required to provide robust economic evidence to assist in the allocation of scarce resources across health and non-healthcare settings; such evaluative frameworks must have robust theoretical underpinnings and be capable of delivering evidence from a non-clinical setting in a timely and cost-effective manner.

In the absence of a definitive evaluation framework for ACIs being currently available, we have a number of recommendations. First, and most importantly, all impact assessments should have a control group or credible counterfactual. This is currently not required when performing an SROI making it difficult to determine if all of the benefits ascribed to an intervention are in fact attributable. This recommendation is in line with the conclusion of a report by the London School of Economics [ 78 ] for the National Audit Office (NAO) which concluded that ‘any impact evaluation (and subsequent value for money calculation) requires construction of a counterfactual’. Second, a detailed technical appendix should accompany all impact assessments to allow independent review by a subject specialist. While this would assist peer review, it would allow providing greater transparency where peer review was not undertaken prior to publication. Furthermore, it would enable recalculation of SROI ratios to exclude ‘value’ attributable to stakeholders which are not relevant to a particular funder. Third, equity considerations should be addressed explicitly in all evaluations (this is currently not required in HTAs). Fourth, both costs and outcomes should be captured from a ‘broad’ perspective (adopting a ‘narrow’ healthcare perspective may underestimate the full economic impact), with non-healthcare sector costs being detailed as part of the analysis. Finally, data should be collected post-implementation to ensure that resources continue to be allocated efficiently.

As with any review, there are limitations which should be noted. A search of the grey literature was included as evaluations of applied public health interventions are not always reported in the academic literature. Systematically identifying grey literature and grey data can be problematic [ 79 , 80 , 81 , 82 , 83 ] as it is not collected, organised or stored in a consistent manner. Hence it is possible that we have not identified all relevant studies. Furthermore, as applied public health interventions can be performed in a non-healthcare setting we included SROIs in our review of economic evaluations. Current guidance on the systematic review of economic evaluations has been developed primarily for review of HTA as opposed to public health interventions and hence SROIs would be excluded, or if included would score poorly due to the inherent biases arising from no comparator or counterfactual being included.

This systematic review found that participation in group-based arts and creativity programmes was generally cost-effective and/or produced a positive return on investment whilst having a positive impact on older people’s physical, psychological, and social health and wellbeing outcomes. Unfortunately, the small number of studies identified, coupled with differences in methods used to assess economic impact hinders our ability to conclusively determine which types of art and creativity-based activities are more cost-effective or represent best value for money.

As well as the need for a greater focus on prevention of poor health as we age, new hybrid models of healthcare delivery are necessary to meet the needs of our ageing population. These models will integrate traditional medical care with other services such as home health aides (some of which may include artificial intelligence), telemedicine and social support networks. Alongside these, ACIs have the potential to provide a low cost, scalable, easily implementable and cost-effective solution to reduce the burden of illness in this age group and support healthy ageing.

Evidence on the cost-effectiveness of a range of ACIs is of utmost importance for policy and decision makers as it can both inform the development of policies that support the provision of ACIs in the context of ageing, but also identify the most cost-effective approaches for delivering such interventions. The development of hybrid models of evaluation, capable of capturing cost-effectiveness and social value, is becoming increasingly necessary as healthcare delivery for this age group moves beyond the realms of primary and secondary care and into the community. The development and refinement of such models will ensure a more comprehensive assessment of the impact of a diverse range of interventions providing a more nuanced understanding of the impact of an intervention. This will help inform decision making and ensure interventions are implemented in a cost-effective and socially beneficial manner.

Availability of data and materials

All data generated or analysed during this study are included in the published article and its supplementary information files.

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We would like to thank Ms. Louise Bradley (Information Resource Officer, Institute of Public Health) for her assistance in refining search strategies and literature search.

This study was supported by the Institute of Public Health (IPH), 200 South Circular Road, Dublin 8, Ireland, D08 NH90. This study was a collaboration between two health economists (GC, CO’N) and two members of staff from the funding organisation (LM, RO’S). Input from IPH staff was fundamental in defining the scope of work and research question, refining search terms and review and editing of the manuscript. Staff from IPH were not involved in quality assurance or review of papers included in the manuscript.

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Crealey, G., McQuade, L., O’Sullivan, R. et al. Arts and creativity interventions for improving health and wellbeing in older adults: a systematic literature review of economic evaluation studies. BMC Public Health 23 , 2496 (2023). https://doi.org/10.1186/s12889-023-17369-x

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A literature-based study of patient-centered care and communication in nurse-patient interactions: barriers, facilitators, and the way forward

Abukari kwame.

1 College of Graduate and Postdoctoral Studies, University of Saskatchewan, Saskatoon, Canada

Pammla M. Petrucka

2 College of Nursing, University of Saskatchewan, Regina Campus, Regina, Canada

Associated Data

Not applicable.

Providing healthcare services that respect and meet patients’ and caregivers’ needs are essential in promoting positive care outcomes and perceptions of quality of care, thereby fulfilling a significant aspect of patient-centered care requirement. Effective communication between patients and healthcare providers is crucial for the provision of patient care and recovery. Hence, patient-centered communication is fundamental to ensuring optimal health outcomes, reflecting long-held nursing values that care must be individualized and responsive to patient health concerns, beliefs, and contextual variables. Achieving patient-centered care and communication in nurse-patient clinical interactions is complex as there are always institutional, communication, environmental, and personal/behavioural related barriers. To promote patient-centered care, healthcare professionals must identify these barriers and facitators of both patient-centered care and communication, given their interconnections in clinical interactions. A person-centered care and communication continuum (PC4 Model) is thus proposed to orient healthcare professionals to care practices, discourse contexts, and communication contents and forms that can enhance or impede the acheivement of patient-centered care in clinical practice.

Providing healthcare services that respect and meet patients’ and their caregivers’ needs are essential in promoting positive care outcomes and perceptions of quality of care, thus constituting patient-centered care. Care is “a feeling of concern for, or an interest in, a person or object which necessitates looking after them/it” [ 1 ]. The Institute of Medicine (IOM) noted that to provide patient-centered care means respecting and responding to individual patient’s care needs, preferences, and values in all clinical decisions [ 2 ]. In nursing care, patient-centered care or person-centered care must acknowledge patients’ experiences, stories, and knowledge and provide care that focuses on and respects patients’ values, preferences, and needs by engaging the patient more in the care process [ 3 ]. Healthcare providers and professionals are thus required to fully engage patients and their families in the care process in meaningful ways. The IOM, in its 2003 report on Health Professions Education , recognized the values of patient-centered care and emphasized that providing patient-centered care is the first core competency that health professionals’ education must focus on [ 4 ]. This emphasis underscored the value of delivering healthcare services according to patients’ needs and preferences.

Research has shown that effective communication between patients and healthcare providers is essential for the provision of patient care and recovery [ 5 – 8 ]. Madula et al. [ 6 ], in a study on maternal care in Malawi, noted that patients reported being happy when the nurses and midwives communicated well and treated them with warmth, empathy, and respect. However, other patients said poor communication by nurses and midwives, including verbal abuse, disrespect, or denial from asking questions, affected their perceptions of the services offered [ 6 ]. Similarly, Joolaee et al. [ 9 ] explored patients’ experiences of caring relationships in an Iranian hospital where they found that good communication between nurses and patients was regarded as “more significant than physical care” among patients.

According to Boykins [ 10 ], effective communication is a two-way dialogue between patients and care providers. In that dialogue, both parties speak and are listened to without interrupting; they ask questions for clarity, express their opinions, exchange information, and grasp entirely and understand what the others mean. Also, Henly [ 11 ] argued that effective communication is imperative in clinical interactions. He observed that health and illness affect the quality of life, thereby making health communication critical and that the “intimate and sometimes overwhelming nature of health concerns can make communicating with nurses and other healthcare providers very challenging” [ 11 ]. Furthermore, Henly [ 11 ] added that patient-centered communication is fundamental to ensuring optimal health outcomes, reflecting long-held nursing values that care must be individualized and responsive to patient health concerns. Given the prevalence of face-to-face and device-mediated communications and interactions in healthcare settings, we must explore and clarify who, what, where, when, why, and how interactions with individuals, families, and communities are receiving care and health services [ 11 ].

The value of effective communication in nurse-patient clinical interactions cannot be overemphasized, as “research has shown that communication processes are essential to more accurate patient reporting and disclosure” [ 12 ]. Respectful communication between nurses and patients can reduce uncertainty, enhance greater patient engagement in decision making, improve patient adherence to medication and treatment plans, increase social support, safety, and patient satisfaction in care [ 12 , 13 ]. Thus, effective nurse-patient clinical communication is essential to enhancing patient-centered care and positive care outcomes.

Patient-centered communication, also known as person-centered communication or client-centered communication, is defined as a process that invites and encourages patients and their families to actively participate and negotiate in decision-making about their care needs, as cited in [ 7 ]. Patient-centered communication is crucial in promoting patient-centered care and requires that patients and their caregivers engage in the care process. As McLean [ 14 ] observed, patient-centered care can be enhanced through patient-centered communication by valuing patients’ dignity and rights. Through open communication and collaboration, where information and care plans are shared among care providers, patients, and their families, care provision becomes patient-centered [ 14 ].

Given the interconnected nature of patient-centered care and communication, we must identify the barriers and enablers of patient-centered care and communication and proposed efficient ways to enhance that because patient-centered communication is essential in achieving patient-centered care. Our aim in this paper is to identify the barriers and facilitators of patient-centered care and communication and propose and present a patient-centered care and communication continuum (PC4) Model to explain how patient-centered care can be enhanced in nurse-patient clinical interactions. As Grant and Booth argued, critical reviews are often used to present, analyse, and synthesized research evidence from diverse sources, the outcome of which is a hypothesis or a model as an interpretation of existing data to enhance evidence-based practice [ 15 ]. Thus, this critical literature review study explores the questions: what are the barriers and facilitators of patient-centered care and how can patient-centered care be enhanced through effective clinical communication?

An earlier version of this study was submitted as part of author AK’s doctoral comprehensive exams in February 2021. An interdisciplinary doctoral committee recommended many of the included literature and the questions explored in this study based on the current discourse of patient-centered care advocated for in many healthcare facilities and in recognition of the universal healthcare access objective of the health sustainable development goal. Additional searches for literature were conducted between September and November 2020 using keywords such as barriers and facilitators of nurse-patient interaction, patient-centered care, patient-centered communication , and nurse-patient communication . Databases searched included CINAHL, PubMed, Medline, and Google Scholar. Included studies in this critical review were empirical research on nurse-patient interactions in different care settings published in English and open access. All relevant articles were read, and their main findings relevant to our review questions were identified and organized into themes and subthemes discussed in this paper. Other published studies were read, and together with those that addressed the review question, a model was developed regarding how to enhance patient-centered care through effective communication.

Barriers to Patient-Centered Care and Communication

Nurses constitute a significant workforce of care providers whose practices can severely impact care outcomes (both positive and negative). Nurses spend much time with patients and their caregivers. As a result, positive nurse-patient and caregiver relationships are therapeutic and constitute a core component of care [ 9 , 13 ]. In many instances, nurses serve as translators or patients’ advocates, in addition to performing their primary care duties. Although good nurse-patient relationships positively impact nurse-patient communication and interaction, studies have shown that several factors impede these relationships with significant consequences on care outcomes and quality [ 6 , 16 , 17 ]. Thus, these barriers limit nurses’ and other care providers’ efforts to provide healthcare that meets patients’ and caregivers’ needs. We categorize the barriers to patient-centered care and communication into four kinds: institutional and healthcare system-related, communication-related, environment-related, and personal and behaviour-related barriers. Although these barriers are discussed in separate subheadings, they are interlinked in complex ways during clinical practice.

Institutional and Healthcare System Related Barriers

Many barriers to providing patient-centered care and communication during nurse-patient interactions emanate from healthcare institutional practices or the healthcare system itself. Some of these factors are implicated in healthcare policy or through management styles and strategies.

Shortage of nursing staff, high workload, burnout, and limited-time constituted one complex institutional and healthcare system-level barrier to effective care delivery [ 18 , 19 ]. For instance, Loghmani et al. [ 20 ] found that staffing shortages prevented nurses from having adequate time with patients and their caregivers in an Iranian intensive care unit. Limitations in nursing staff, coupled with a high workload, led to fewer interactions between nurses, patients, and caregivers. Similarly, Anoosheh et al. [ 16 ] found that heavy nursing workload was ranked highest as a limiting factor to therapeutic communication in nurse-patient interactions in Iran.

In a study on communication barriers in two hospitals affiliated with Alborz University of Medical Sciences, Norouzinia et al. [ 21 ] found that shortage of nurses, work overload, and insufficient time to interact with patients were significant barriers to effective nurse-patient interactions. Similar factors are identified as barriers to nurse-patient communication and interactions in other studies [ 13 , 16 , 18 ]. For instance, Amoah et al. [ 16 ] reported that nursing staff shortage and high workload were barriers to patient-centered care and therapeutic communication among Ghanaian nurses and patients. Amoah and colleagues reported a patient’s statement that:

[B]ecause there are few nurses at the ward, sometimes you would want a nurse to attend to you, but he or she might be working on another patient, so in such case, the nurse cannot divide him or herself into two to attend to you both [ 16 ].

Nurses and patients and their caregivers have noted that limited time affects nurse-patient interactions, communication, and care quality. Besides, Yoo et al. [ 22 ] reported that limited visiting hours affected communications between caregivers and nurses in a tertiary hospital in Seoul, Korea. Since the caregivers had limited time to spend with patients, they had little knowledge about the intensive care unit and distrusted the nurses.

Although nursing staff shortage is a significant barrier to patient-centered care and communication that healthcare institutions and managers must know, some healthcare scholars have critique nurses’ complaints of time limitation. For instance, McCabe [ 7 ] argued that the quality of nurse-patient interactions is what matters and not the quantity of time spent with patients and their caregivers. McCabe maintained that “spending long periods with patients does not always result in positive nurse-patient relationships” [ 7 ]. He argued that implementing patient-centered care does not require additional time; hence, nurses’ perceptions of being too busy cannot excuse poor therapeutic communication during clinical interactions. Instead, nurses are encouraged to develop self-awareness, self-reflection, and a commitment to ensuring that patients receive the needed care.

Another institution-related barrier to patient-centered care and communication is the healthcare system’s emphasis on task-centered care. Care providers are more focused on completing care procedures than satisfying patients’ and caregivers’ needs and preferences. This barrier to patient-centered care and communication is acknowledged in several studies [ 7 , 14 , 20 , 22 , 23 ]. For example, McLean [ 14 ] studied dementia care in nursing homes in the United States. She found that patient-centered care and communication in one nursing home (Snow I) were severely affected when nurses, physicians, and care managers focused on completing tasks or observing care and institutional routines to the detriment of satisfying patients’ care needs. However, in the other care home (Snow II), patient-centered care was enhanced as nurses, physicians, and the care home managers focused on addressing patients’ needs and values rather than completing care routines and tasks.

Similarly, Yoo and colleagues [ 22 ] observed that nurse-patient communication was affected when the ICU nurses placed urgency on completing tasks linked directly to patients’ health (e.g., stabilizing vital signs) than communicating to addressed patients’ specific needs. This evidence shows that when nurses are more task-focused, patients and caregivers are treated as bodies and objects, on which medical and care practices must be performed to restore health. Research has shown that when nurses focus on task-oriented care, it becomes hard to provide holistic care to patients or teach and communicate with patients even when nurses are less busy [ 20 ].

Nursing managers and their management styles can affect patient-centered care and communication. Studies have revealed that the management styles that nursing managers implement can either facilitate or impede patient-centered care [ 14 , 22 ]. When nurse managers orient their nursing staff towards task-centered care practices, it affects nurse-patient interaction and communication. Moreover, when nurse managers fail to address their staff’s mental health needs and personal challenges, it influences how nurses attend to patients’ care needs. For example, nurses have indicated that nurse-patient communication is affected when nurse managers are unsupportive or unresponsive to their needs [ 20 ].

In a study exploring nursing and midwifery managers’ perspectives on obstacles to compassion giving and therapeutic care across 17 countries, Papadopoulos et al. [ 24 ] discovered that nurses and midwifery managers’ characteristics and experiences could facilitate or impede compassion and therapeutic interactions in nursing care. Negative personal attitudes, including selfishness, arrogance, self-centeredness, rudeness, lack of leadership skills, the desire for power, and feelings of superiority among nurses and midwifery managers, were obstacles to compassion building. The study further showed that managers who emphasize rules, tasks, and results do not prioritize relationship-building and see their staff as workers rather than team members [ 24 ]. Therefore, nurse managers and care administrators must monitor nurse-patient interaction and communication to address nurses’ concerns and support them, especially in resource-constrained and high patient turnover contexts [ 25 , 26 ].

Communication-Related Barriers

Effective communication is essential to providing patient-centered care. Studies have shown that poor communication between care providers and patients and their caregivers affects care outcomes and perceptions of care quality [ 7 , 16 , 27 , 28 ]. A consistent communication-related barrier in nurse-patient interaction is miscommunication, which often leads to misunderstandings between nurses, patients, and their families [ 20 ]. Other communication-related barriers include language differences between patients and healthcare providers [ 6 , 16 , 27 ], poor communication skills, and patients’ inability to communicate due to their health state, especially in ICU, dementia, or end-of-life care contexts [ 13 , 22 ]. For instance, in their maternity care study, Madula et al. [ 6 ] noted that language barriers significantly affected effective communication between nurses/midwives and expectant mothers. A patient in their study indicated that although many nurses were polite and communicated well, some nurses had challenges communicating with patients in the Chitumbuka language, which affected those nurses’ ability to interact effectively with patients [ 6 ].

Furthermore, Norouzinia et al. [ 21 ] asserted that effective communication could not be established when nurses and patients have a language difference. Moreover, the meanings of certain non-verbal communication acts (e.g., head nodding, eye gaze, touch) can invoke different interpretations across different cultures, which could impede the interactions between patients and nurses. Even in healthcare contexts where nurses and patients speak the same language, “differences in vocabulary, rate of speaking, age, background, familiarity with medical technology, education, physical capability, and experience can create a huge cultural and communication chasm” between nurses and patients [ 12 ]. In ICU and other similar care settings, nurses find it difficult to effectively communicate with patients because the mechanical ventilators made it hard for patients to talk [ 22 ].

To overcome the communication-related barriers, healthcare institutions must make it a responsibility to engage translators and interpreters to facilitate nurse-patient interactions where a language barrier exists. Moreover, nurses working in ICU and other similar settings should learn and employ alternative forms of communication to interact with patients.

Environment-Related Barriers

The environment of the care setting can impact nurse-patient communication and the resulting care. Thus, “good health care experiences start with a welcoming environment” [ 29 ]. Mastors believed that even though good medicine and the hands working to provide care and healing to the sick and wounded are essential, we must not “forget the small things: a warm smile, an ice chip, a warm blanket, a cool washcloth. A pillow flipped to the other side and a boost in bed” [ 29 ]. The environment-related barriers are obstacles within the care setting that inhibit nurse-patient interaction and communication and may include a noisy surrounding, unkept wards, and beds, difficulties in locating places, and navigating care services. Noisy surroundings, lack of privacy, improper ventilation, heating, cooling, and lighting in specific healthcare units can affect nurse-patient communication. These can prevent patients from genuinely expressing their healthcare needs to nurses, which can subsequently affect patient disclosure or make nursing diagnoses less accurate [ 13 , 18 , 21 ]. For instance, Amoah et al. [ 16 ] revealed that an unconducive care environment, including noisy surroundings and poor ward conditions, affected patients’ psychological states, impeding nurse-patient relationships and communication. Moreover, when care services are not well-coordinated, new patients and their caregivers find it hard to navigate the care system (e.g., locating offices for medical tests and consultations), which can constrain patient-centered care and communication.

Reducing the environment-related barriers will require making the care setting tidy/clean, less noisy, and coordinating care services in ways that make it easy for patients and caregivers to access. Coordinating and integrating care services, making care services accessible, and promoting physical comfort are crucial in promoting patient-centered care, according to Picker’s Eight Principles of Patient-Centered Care [ 30 ].

Personal and Behaviour Related Barriers

The kind of nurse-patient relationships established between nurses and patients and their caregivers will affect how they communicate. Since nurses and patients may have different demographic characteristics, cultural and linguistic backgrounds, beliefs, and worldviews about health and illnesses, nurses’, patients’, and caregivers’ attitudes can affect nurse-patient communication and care outcomes. For instance, differences in nurses’ and patients’ cultural backgrounds and belief systems have been identified as barriers to therapeutic communication and care [ 12 , 13 , 21 ]. Research shows that patients’ beliefs and cultural backgrounds affected their communication with nurses in Ghana [ 16 ]. These scholars found that some patients refused a blood transfusion, and Muslim patients refused female nurses to attend to them because of their religious beliefs [ 16 ]. Further, when nurses, patients, or their caregivers have misconceptions about one another due to past experiences, dissatisfaction about the care provided, or patients’ relatives and caregivers unduly interfere in the care process, nurse-patient communication and patient-centered care were affected [ 16 , 21 ].

Similarly, nurse-patient communication was affected when patients or caregivers failed to observe nurses’ recommendations or abuse nurses due to misunderstanding [ 20 ], while patients’ bad attitudes or disrespectful behaviours towards nurses can inhibit nurses’ ability to provide person-centered care [ 31 ]. The above-reviewed studies provided evidence on how patients’ and caregivers’ behaviours can affect nurses’ ability to communicate and deliver patient-centered care.

On the other hand, nurses’ behaviours can also profoundly affect communication and care outcomes in the nurse-patient dyad. When nurses disrespect, verbally abuse (e.g., shouting at or scolding), and discriminate against patients based on their social status, it affects nurse-patient communication, care outcomes, and patient disclosure [ 6 , 32 ]. For instance, Al-Kalaldeh et al. [ 18 ] believe that nurse-patient communication is challenged when nurses become reluctant to hear patients’ feelings and expressions of anxiety. When nurses ignore patients’ rights to share ideas and participate in their care planning, such denials may induce stress, discomfort, lack of trust in nurses, thereby leading to less satisfaction of care [ 18 ].

Furthermore, when nurses fail to listen to patients’ and caregivers’ concerns, coerce patients to obey their rules and instructions [ 16 , 17 , 20 ], or fail to provide patients with the needed information, nurse-patient communication and patient-centered care practices suffer. To illustrate, in Ddumba-Nyanzia et al.‘s study on communication between HIV care providers and patients, a patient remarked that: “I realized no matter how much I talked to the counselor, she was not listening. She was only hearing her point of view and nothing else, [and] I was very upset” [ 17 ]. This quote indicates how care provider attitudes can constrain care outcomes. Due to high workload, limited time, poor remunerations, and shortage of personnel, some nurses can develop feelings of despair, emotional detachment, and apathy towards their job, which can lead to low self-esteem or poor self-image, with negative consequences on nurse-patient interactions [ 13 , 18 ].

Given the significance of effective communication on care, overcoming the above personal and behaviour related barriers to patient-centered care and communication is crucial. Nurses, patients, and caregivers need to reflect on the consequences of their behaviours on the care process. Thus, overcoming these barriers begins with embracing the facilitators of patient-centered care and communication, which we turn to in the next section.

Facilitators of patient-centered care and communication

Patient-centered care and communication can be facilitated in several ways, including building solid nurse-patient relationships.

First, an essential facilitator of patient-centered care and communication is overcoming practical communication barriers in the nurse-patient dyad. Given the importance of communication in healthcare delivery, nurses, patients, caregivers, nursing managers, and healthcare administrators need to ensure that effective therapeutic communication is realized in the care process and becomes part of the care itself. Studies have shown that active listening among care providers is essential to addressing many barriers to patient-centered care and communication [ 7 , 13 ]. Although handling medical tasks promptly in the care process is crucial, the power of active listening is critical, meaningful, and therapeutic [ 22 ]. By listening to patients’ concerns, nurses can identify patients’ care needs and preferences and address their fears and frustrations.

Another facilitator of patient-centered care is by understanding patients and their unique needs [ 25 ], showing empathy and attending attitudes [ 7 , 13 ], expressing warmth and respect [ 22 ], and treating patients and caregivers with dignity and compassion as humans. For instance, McCabe [ 7 ] noted that attending, which obligates nurses to demonstrate that they are accessible and ready to listen to patients, is a patient-centered care process; a fundamental requirement for nurses to show genuineness and empathy, despite the high workload. Showing empathy, active listening, respect, and treating patients with dignity are core to nursing and care, and recognized in the Code of Ethics for Nurses [ 33 ], and further emphasized in the ongoing revision of the Code of Ethics for nurses [ 34 ].

Besides, engaging patients and caregivers in the care process through sharing information, inviting their opinion, and collaborating with them constitutes another facilitator of patient-centered care and communication. When patients and caregivers are engaged in the care process, misunderstandings and misconceptions are minimized. When information is shared, patients and caregivers learn more about their health conditions and the care needed. As McLean [ 14 ] argued, ensuring open communication between care providers and patients and their families is essential to enhancing patient-centered care. Conflicts ensue when patients or their families are denied information or involvement in the care process. As a result, the Harvard Medical School [ 30 ] identified patient engagement, information sharing, and nurse-patient collaboration during care as essential patient-centered care principles.

Finally, health policy must be oriented towards healthcare practices and management to facilitate patient-centered care and communication. These policies, at a minimum, can involve changes in management styles within healthcare institutions, where nurse managers and healthcare administrators reflect on nursing and care practices to ensure that the Code of Ethics of Nurses and patients’ rights are fully implemented. Resource constraints, staff shortages, and ethical dilemmas mainly affect care practices and decision-making. Nonetheless, if patients are placed at the center of care and treated with dignity and respect, most of the challenges and barriers of patient-centered care will diminish. Empowering practicing nurses, equipping them with interpersonal communication skills through regular in-service training, supporting them to overcome their emotional challenges, and setting boundaries during nurse-patient interactions will enhance patient-centered care practices.

In line with the above discussion, Camara et al. [ 25 ] identify three core dimensions that nurses, patients, and caregivers must observe to enhance patient-centered care: treating the patient as a person and seeing the care provider as a person and a confidant. Regarding the first dimension, care providers must welcome patients, listen to them, share information with them, seek their consent, and show them respect when providing care. The second dimension requires that the healthcare provider be seen and respected as a person, and negative perceptions about care providers must be demystified. According to Camara et al. [ 25 ], care providers must not overemphasize their identities as experts but rather establish good relationships with patients to understand patients’ personal needs and problems. Lastly, patients and caregivers must regard care providers as confidants who build and maintain patients’ trust and encourage patients’ participation in care conversations. With this dimension, patients and caregivers must know that nurses and other care providers have the patient at heart and work to meet their care needs and recovery process.

Camara et al.‘s [ 25 ] three dimensions are essential and position patients, their caregivers, and nurses as partners who must engage in dialogic communication to promote patient-centered care. As a result, effective communication, education, and increased health literacy among patients and caregivers will be crucial in that direction.

Enhancing Patient-Centered Care and Communication: A Proposed Model

Nursing care practices that promote patient-centered communication will directly enhance patient-centered care, as patients and their caregivers will actively engage in the care process. To enhance patient-centered communication, we propose person-centered care and communication continuum (PC4) as a guiding model to understand patient-centered communication, its pathways, and what communication and care practices healthcare professionals must implement to achieve person-centered care. In this PC4 Model, we emphasize the person instead of the patient because they are a person before becoming a patient. Moreover, the PC4 Model is supposed to apply to all persons associated with patient care; thus, respect for the dignity of their personhood is crucial.

Although much is written about patient-centered communication in the healthcare literature, there is a gap regarding its trajectory and what communication content enhances patient-centered communication. Also, little is known about how different clinical discourse spaces influence communication and its content during nurse-patient clinical interactions. Using evidence from Johnsson et al. [ 3 ], Murira et al. [ 23 ], and Liu et al. [ 35 ], among other studies, we outline the components of the PC4 Model and how different discourse spaces in the clinical setting and the content of communication impact patient-centered care and communication.

The proposed PC4 Model in this paper has three unbounded components based on the purpose of and how communication is performed among care providers, patients, and their caregivers. Figure  1 illustrates the PC4 Model, its features, and trajectory.

A Person-Centered Care and Communication Continuum (PC4 Model)

Task-Centered Communication

At the lowest end of the PC4 Model is task-centered communication. Here, the care provider’s role is to complete medical tasks as fast as possible with little or no communication with the patient and their caregivers. Patients and caregivers are treated as bodies or objects whose disease symptoms need to be studied, identified, recorded, treated, or cured. As Johnsson et al. [ 3 ] observed, communication content at this stage is mainly biomedically oriented, where nurses and other healthcare professionals focus on the precise medical information (e.g., history taking, medical examination, test results, medication, etc.) about the patient. With a task-centered orientation, nurses make journal entries about their patients’ disease state and ensure that treatment plans, diagnostic tests, and medical prescriptions are completed. Communication at this stage is often impersonal or rigid (see [ 23 ] for details). Care providers may address patients and their caregivers by using informal attributes (e.g., bed 12, the woman in the red shirt, card 8, etc.), thereby ignoring patients’ and caregivers’ personal and unique identities. Patients’ and caregivers’ nonverbal communication signs are mostly overlooked.

Motivations for task-centered communication can be attributed to time limitation, high workload, and staff shortage, thereby pushing nurses and other care providers to reach as many patients as possible. Moreover, the healthcare system’s orientation towards and preference for biomedically-focused care seems to favour task-centered communication [ 7 , 14 ].

Depending on the clinical discourse space under which patient-provider interactions occur, different forms of communication are employed. Clinical discourse spaces can be public (e.g., in the ward, patient bedside), private (e.g., consulting rooms, medical test labs, nurse staff station, etc.), or semi-private (e.g., along the corridor) [ 35 ]. In these clinical discourse spaces, nurse-patient communication can be uninformed (patients or caregivers are not informed about patients’ care conditions or why specific data and routines are performed). It can be non-private (others can hear what the nurse and patient are talking about) or authoritative (care providers demonstrate power and control and position themselves as experts) [ 23 ]. Finally, in task-centered communication, healthcare providers often use medical jargon or terminologies [ 3 ] since the goal of communication is not to engage the patient in the process. Usually, patients or their caregivers are not allowed to ask questions, or their questions get ignored or receive superficial, incomprehensible responses.

Process-Centered Communication

Process-centered communication is an intermediate stage on the continuum, which could slip back into the task-centered or leap forward into person-centered communication. Through process-centered communication, care providers make an effort to know patients and their caregivers as they perform care routines. Care providers ask patients or their caregivers questions to understand the care conditions but may not encourage patients or caregivers to express their thoughts about their care needs. Patients and caregivers are recognized as persons with uniques care needs but may not have the agency to influence the care process. Care providers may chit-chat with patients or their caregivers to pass the time as they record patients’ medical records or provide care. Unlike task-centered communication, there is informative and less authoritative communication between nurses and patients and their caregivers. The goal of process-centered communication could be a mixture of instrumental and relational, with less display of power and control by nurses.

Person-Centered Communication

This is the highest point of the PC4 Model, where patient-centered care is actualized. At this stage of the communication continuum, patients and caregivers are treated as unique persons with specific care needs and are seen as collaborators in the care process. As McLean [ 14 ] observed, caregiving becomes a transactional relationship between the care provider and receiver at the person-centered stage of the continuum. The care itself becomes intersubjective, a mutual relational practice, and an ongoing negotiation for care providers and receivers [ 14 ].

The content of communication at this stage of the continuum is both “personal” and “explanatory” [ 3 ]. Nurses and other healthcare providers create meaningful relationships with patients and their caregivers, understand patients’ concerns, needs, and problems, use open-ended questions to encourage patients or caregivers to express their thoughts and feelings about the care situation. Nurses and other healthcare professionals explain care routines, patients’ health conditions, and management plans in lay language to patients and caregivers through person-centered communication. Accomplishing this level includes employing alternative forms of communication to meet the needs of intensive care unit patients, deaf patients, and ventilated and intubated patients. For instance, it has been shown that “deaf people […] frequently do not have access to clear and efficient communication in the healthcare system, which deprives them of critical health information and qualified health care” [ 36 ]. Empathetic communication practices, including active listening, showing genuine interest in patients’ care, and respect and warmth, become a significant part of nursing care [ 3 , 7 , 14 , 22 ].

Different communication strategies are employed based on the care situation and context. Chit-chatting, as a form of personal communication [ 3 ], use of humor as a communication strategy [ 7 , 8 ], and even maintaining silence [ 28 ] are essential in enhancing person-centered care and communication. Both care providers and patients or their caregivers use relationship-building and -protecting humor (see [ 28 ] for details) to address difficult situations in the care process.

Implications of the PC4 Model for Nursing Practice

Given the values of effective communication in nurse-patient interactions and care outcomes, nurses and other healthcare providers must ensure that they develop therapeutic relationships with patients, their families, and caregivers to promote person-centered care and communication. Achieving that begins with knowing and reflecting on the barriers of therapeutic communication and ways to minimize them. The PC4 Model draws nurses and all healthcare providers’ attention to patient-centered care pathways and how effective communication is necessary. Healthcare professionals, including nurses, must be aware of how their communication orientation–––either oriented toward completing tasks, following care processes or toward addressing patients’ and their caregivers’ needs––can impact patient-centered care. Healthcare providers must observe the care context, patients’ unique situations, their non-verbal language and action, and whether they belong to historically marginalized groups or cultures.

Mastors [ 29 ] has offered healthcare providers some guidance to reflect on as they communicate and interact with patients and caregivers. Thus, (a) instead of asking patients, “What’s the matter?“ care providers must consider asking them, “What’s important to you?“ With this question, the patient is given a voice and empowered to contribute to their own care needs. Care providers should (b) check with patients in the waiting room to update patients whose waiting time has been longer than usual, based on the care context. They should also (c) try to remember their conversations with patients to build on them during subsequent interactions. This continuity can be enhanced by nurse managers reexamining how they deploy care providers to patients. The same nurse can be assigned to the same patients for the duration of the patient’s stay to help patients feel valued and visible [ 29 ].

Knowledge of cultural competence, sensitivity, humility, and interpersonal communication skills will help achieve and implement the PC4 Model. As Cuellar [ 37 ] argues, “[h]umility is about understanding and caring for all people [and] being empathetic.“ Cultural competence is a “dynamic process of acquiring the ability to provide effective, safe, and quality care to the patients through considering their different cultural aspects” [ 38 ]. The concept of cultural competence entails “cultural openness, awareness, desire, knowledge and sensitivity” during care [ 39 ]. It demands that care providers respect and tailor care to align with patients’ and caregivers’ values, needs, practices, and expectations, based on care and moral ethics and understanding [ 39 ]. Active listening and showing compassion as therapeutic relationship-building skills are essential, and continuous education and mentorship will be crucial to developing these skills among healthcare providers.

We invite qualitative and quantitative studies, especially on language use and communication strategies, to explore and evaluate the PC4 Model. Providing in-depth and experiential data on ways to increase its effectiveness as a tool to guide healthcare providers is highly desired. More knowledge can support healthcare providers in offering evidence-based patient-centered care in different healthcare settings and units.

Conclusions

Effective communication is an essential factor in nurse-patient interactions and a core component of nursing care. When communication in the nurse-patient dyad is patient-centered, it becomes therapeutic. It allows for trust and mutual respect in the care process, thereby promoting care practices that address patients’ and caregivers’ needs, concerns, and preferences. We have identified the barriers and facilitators of patient-centered care and communication and proposed a person-centered care and communication continuum (PC4 Model) to demonstrate how patient-centered communication intersects with patient-centered care.

Acknowledgments

We express our gratitude to the first author’s doctoral committee members for their valuable comments, suggestions, and critique of an earlier version of this paper. We are also grateful to the anonymous reviewers for the insightful comments and suggestions that have helped us improve the study’s quality.

Authors' information

Abukari Kwame is a Ph.D. candidate in Interdisciplinary Studies in the College of Graduate and Postdoctoral Studies, University of Saskatchewan, interested in patients' rights in nurse-patient clinical communications and interactions in the hospital setting. He holds two Master of Philosophy degrees in Indigenous Studies and English Linguistics. Abukari's research interests include language use in social interaction, health communication, First/Second language acquisition, African traditional medical knowledge, and Indigenous and qualitative research methodologies.

Pammla M. Petrucka is a professor in Nursing and has international research experience with many of her graduate students from Africa, Asia, and the Caribbean. Pammla has published extensively in the field of nursing. Her research interests are vast, including child and maternal health, Indigenous peoples' health, global health, and vulnerable populations, with extensive experiences in qualitative research and indigenous research methodologies. Pammla is co-editor of the BMC Nursing journal and a reviewer for many other academic journals.

Abbreviations

Authors’ contributions.

Both authors conceived the topic. PMP recommended the literature, AK searched and added more sources, and drafted the paper. PMP reviewed the paper for intellectual content. Both AK and PMP read and approved the final version.

The authors have not received any funding for the conduct, preparation, and publication of this paper.

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Published on 8.4.2024 in Vol 12 (2024)

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis

Authors of this article:

• Xiaoyu Yang 1 , BSN ; 
• Xueting Li 2 , BSN ; 
• Shanshan Jiang 2 , BSN ; 
• Xinying Yu 3 , MSN

1 Department of Oncology, Shengjing Hospital of China Medical University, , Shenyang, , China

2 College of Nursing, China Medical University, , Shenyang, , China

3 Department of Pediatrics, Shengjing Hospital of China Medical University, , Shenyang, , China

Corresponding Author:

Xinying Yu, MSN

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear.

Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care.

Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio.

Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85).

Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Trial Registration: PROSPERO CRD42023415688; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=415688

Introduction

With the continued increase in the number of individuals with multiple and severe diseases, the global demand for palliative care services is also growing [ 1 ]. Given that most patients who require palliative care prefer to spend time at home and receive the necessary care [ 2 - 4 ], informal caregivers play a crucial role in caring for patients. However, the cumbersome and complex care tasks may have negative impacts on their physical, psychological, and social well-being [ 5 - 7 ]. In recent years, telemedicine, as an emerging technology, has been increasingly used in home care [ 2 ], benefiting informal caregivers [ 8 , 9 ]. It may serve as a pathway to support informal caregivers of patients in palliative care, improve their health outcomes, and thus enhance the quality of palliative care [ 10 ].

The World Health Organization estimates that 56.8 million people require palliative care yearly [ 11 ]. However, there is a prevailing shortage of professional palliative care personnel, and the majority of patients prefer to receive such care at home [ 2 - 4 ]. Hence, informal caregivers, usually family members or friends, assume the primary responsibility for patient care. In doing so, they adapt to changes in their role, family, and social life to provide long-term, unpaid care for patients [ 12 , 13 ]. Informal caregivers frequently lack professional training [ 4 ]. Thus, they face unmet supportive care needs, such as symptom management, psychological counseling, and social support [ 4 , 13 ], and experience anxiety, depression, physical overload, and a decline in the quality of life (QOL) [ 5 - 7 ]. Studies reveal that the state of informal caregivers and the condition of the patients mutually affect each other. The quality of care provided by caregivers in poor condition can be diminished, exacerbating the patient’s condition. In turn, the patient’s worsening condition can negatively affect informal caregivers [ 7 , 14 , 15 ]. Therefore, the demand to assist informal caregivers and address their physiological, psychological, and social health needs is urgent.

With the development of the information age, telemedicine has demonstrated tremendous potential in providing health care. Telemedicine refers to the use of information and communication technologies to facilitate communication between patients and health care workers for the assessment, diagnosis, treatment, and prevention of diseases, thereby improving patient health [ 16 ]. As a personalized medical approach, telemedicine overcomes the conventional care constraints of time and space; facilitates remote treatment, supervision, education, and care services; and promotes the rational distribution and refinement of medical resources [ 17 ]. Telemedicine has been widely applied in medical fields such as diabetes, chronic wounds, and cardiovascular diseases [ 18 , 19 ], benefiting patients and improving the health outcomes of informal caregivers [ 8 , 9 ].

In recent years, telemedicine has also provided novel ideas to guide palliative care [ 20 ]. In the field of palliative care, an increasing number of informal caregivers are opting to provide home care for patients who require palliative care [ 21 ]. Telemedicine facilitates real-time communication between professionals and family caregivers. This promotes information sharing; assists in the patient’s symptom management; and helps in providing health education, psychological counseling, and social support [ 22 ]. However, the outcomes of using telemedicine with informal caregivers are controversial. For example, a randomized controlled trial (RCT) by Chen et al [ 23 ] indicated that telemedicine could alleviate caregiving burden and enhance the QOL of informal caregivers. However, Dionne-Odom et al [ 24 ] found no significant difference between the telemedicine and control groups in terms of improvements in informal caregivers’ QOL, burden, or emotional state. Of the few available systematic reviews, most provide a descriptive summary of results without performing a meta-analysis to quantify the outcomes of the studies [ 25 - 27 ]. Thus, the intervention effects of telemedicine remain unclear.

Given the limitations of previous reviews, we conducted a systematic review and meta-analysis. We summarized articles on the intervention effects of telemedicine among the informal caregivers of patients in palliative care, focusing on 4 health outcomes: caregiver burden, anxiety, depression, and QOL. This provides a reference for the clinical practice of telemedicine. This is the first systematic review and meta-analysis to verify the effects of telemedicine on the outcomes for informal caregivers of patients in palliative care.

This systematic review adhered to the guidelines in the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist [ 28 ] ( Checklist 1 ). In addition, it was registered on PROSPERO (CRD42023415688).

Ethical Considerations

As all data used were obtained from previously published articles, this research did not require ethical approval from an institutional review board or informed consent from participants.

Search Strategy

A literature search was conducted in 10 electronic databases (PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP) for publications dating from the establishment of each database until March 31, 2023. Following the Population, Intervention, Comparison, Outcome, and Study design principles, the searches in this systematic review were performed using Medical Subject Headings, the title or abstract, and keywords, as well as Boolean logical operations. Multimedia Appendix 1 describes the search strategy for all databases. In addition, relevant systematic reviews and references were manually screened to identify additional eligible studies.

Study Eligibility Criteria

The inclusion criteria were as follows. (1) The study population was informal adult caregivers (aged ≥18 y) caring for patients receiving palliative care for severe diseases (eg, advanced stage, incurable “stage 4” diseases). (2) Intervention measures were being provided through the internet, applications, telephone, video, or other telemedicine technologies. (3) The control group received usual care or enhanced usual care or was on a waiting list. (4) The study reported outcomes for informal caregivers focusing on 1 or more of the following aspects: caregiver burden, anxiety, depression, or QOL. (5) The study was designed as an RCT. (6) The article was published in English or Chinese.

The exclusion criteria were as follows. (1) The publications were qualitative research, conference abstracts, letters, comments, reviews, or protocols. (2) Patients were underage (aged <18 y), or palliative care indications were unrelated to life-limiting diseases (eg, chronic diseases or nonmalignant pain). (3) Interventions were not being targeted at informal caregivers. (4) The full-text article or relevant data were not accessible.

Study Selection and Data Extraction

The titles and abstracts of the retrieved literature were first downloaded and imported into Endnote X9 (Clarivate; a reference management program) to remove duplicates. Two evaluators then independently screened the studies based on the inclusion and exclusion criteria. Any disagreements were resolved through consultation or discussion with a third researcher. Data were extracted through a predesigned table, including the name of the first author, year of publication, country, age of the caregiver, sample size, type of disease diagnosed in the patient, type and content of intervention measures, study duration, and time of the outcome assessment.

Quality Assessment

Two evaluators independently assessed the methodological quality of the included studies using the Cochrane Collaboration’s tool for assessing the risk of bias [ 29 ]. Seven aspects were evaluated: (1) random sequence generation, (2) allocation concealment, (3) blinding of participants and personnel, (4) blinding of outcome assessment, (5) incomplete outcome data, (6) selective reporting, and (7) other biases. Each study was categorized as “low risk,” “uncertain risk,” or “high risk,” with disagreements resolved through consultation or discussion with a third researcher.

Data Analysis

For studies with multiple measurements, only data from the last measurement were extracted for analysis. SDs were calculated according to the Cochrane Handbook for Systematic Reviews of Interventions if not reported [ 29 ]. If required data were not reported, we contacted the first authors of the relevant publication. Heterogeneity testing and the meta-analysis were conducted using Review Manager 5.4 (The Cochrane Collaboration). Intervention effects were estimated through standardized mean differences (SMDs) and 95% CIs, and forest plots were generated. A 2-sided P value <.05 was considered statistically significant. Heterogeneity was evaluated using the χ 2 test (with P <.10 indicating heterogeneity) and I 2 test (with I 2 >50% indicating moderate heterogeneity and I 2 >75% indicating high heterogeneity). If I 2 ≤50% and P >.10, a fixed-effect model was adopted for data merging and analysis; otherwise, a random-effects model was used. A sensitivity analysis was conducted using a one-study-out method to evaluate the robustness of the combined results. In addition, 95% prediction intervals (PIs) were calculated using R (version 4.3.2; R Foundation for Statistical Computing) and RStudio (Posit) to explain the heterogeneity across studies and estimate the true effects in similar future studies [ 30 ].

Search Results and Selection

A preliminary search of the electronic databases yielded 5456 articles: 254 in Chinese and 5202 in English. After removing 1733 duplicated articles, an additional 3669 unrelated articles were excluded after evaluating their titles and abstracts, leaving 54 articles for the full-text review. From these, 8 articles were included, and with the addition of 1 more article, 9 studies were ultimately included in the meta-analysis. The screening process is detailed in Figure 1 [ 28 ].

Characteristics of the Included Studies

Study characteristics.

Multimedia Appendix 2 [ 23 , 24 , 31 - 37 ] summarizes the main characteristics of the included studies. These studies were all RCTs published in 3 countries between 2015 and 2023: a total of 6 from the United States, 1 from the Netherlands, and 2 from China. Four studies mentioned the theoretical or conceptual framework of the intervention, including Erikson’s psychosocial development theory and Bowen’s family system theory [ 23 ], self-determination theory [ 31 ], shared decision-making [ 33 ], and cognitive behavioral stress management [ 35 ].

Characteristics of Informal Caregivers

The studies involved 1215 informal caregivers, with the number of participants in each study ranging from 35 to 334. The average age of the informal caregivers ranged from 45.71 (SD 11.85) to 60.1 (SD 12.5) years, and they were predominantly patients’ parents, spouses or partners, and children. The types of diseases of the patient included advanced cancer, advanced heart failure, and advanced dementia.

Characteristics of Telemedicine Interventions

Telemedicine was practiced via websites, web conferences, applications, or the telephone, but primarily through websites and the telephone. A total of 4 studies provided interventions through a website. Oliver et al [ 33 ] performed a 3-arm clinical trial, where 1 group received an intervention via Facebook, which offered education and social support to informal caregivers, whereas a separate group received the ACCESS intervention. Here, in addition to the Facebook-based intervention, web conferences were incorporated to facilitate the engagement of informal caregivers in joint decision-making in palliative care. The project aimed to alleviate informal family caregivers’ anxiety and depression. Pensak et al [ 35 ] implemented a 12-week intervention named Pep-Pal, which provided stress management support to informal caregivers of patients with advanced cancer via a website. The intervention program of Parker Oliver et al [ 34 ], ACTIVE, used web conferences or telephone calls to link informal caregivers to end-of-life care teams to improve caregivers’ perceptions of pain management. Similarly, Fu et al [ 37 ] established real-time communication between medical staff and family caregivers of patients with advanced cancer via an internet platform to provide relevant health guidance. Furthermore, 2 studies provided intervention through an application. Schuit et al [ 36 ] developed a program called Oncokompas to provide personalized information, suggestions, and supportive care solutions tailored to the caregiver’s situation. Chen et al [ 23 ] created a dyadic life review program for patients with advanced cancer and their caregivers using WeChat software to promote their QOL. In addition, 3 studies offered interventions via the telephone. Dionne-Odom et al [ 24 ] implemented a telephone intervention program named ENABLE CHF-PC, which offered psychological and problem-solving support for patients with heart failure in palliative care and their caregivers to improve their emotions, burden, and QOL. Two years later, Dionne-Odom et al [ 32 ] performed a similar intervention for patients with advanced cancer and their caregivers. Finally, Badr et al [ 31 ] provided a telephonic psychosocial intervention to enhance the QOL of patients with advanced cancer and their caregivers.

Characteristics of Controls

The control group in 1 study received enhanced usual care [ 33 ], whereas those in the remaining studies received usual care. Furthermore, in the study by Schuit et al [ 36 ], informal caregivers in the control group were allowed to use telemedicine equipment after the research ended.

Risk of Bias

A quality assessment of the included studies was conducted using the Cochrane risk-of-bias tool. Although most studies (6/9, 67%) reported using randomization, some did not detail allocation concealment, potentially leading to selection bias. Only 2 studies were determined as having a low risk of implementation bias owing to the challenge of blinding researchers and participants in telemedicine intervention trials [ 24 , 32 ]. Approximately half (4/9, 45%) the studies blinded the outcome assessors, and thus, their risk of measurement bias was classified as low. Three studies were determined to have a high risk of attrition bias due to elevated loss to follow-up rates or a lack of appropriate data processing methods [ 32 , 35 , 37 ]. However, no selective reporting bias was detected in the included studies. Four studies were categorized as having a high risk of other biases due to baseline differences [ 24 , 34 ] and small sample sizes [ 31 , 32 ]. The results are shown in Figure 2 .

Meta-Analysis

Caregiver burden.

A total of 5 studies that evaluated caregiver burden were included in the meta-analysis [ 23 , 31 , 35 - 37 ]. Since no significant heterogeneity was observed among the included studies ( I 2 =0%; P =.64), a fixed-effect model was used for merging the data. The results revealed that telemedicine intervention could mitigate the burden on informal caregivers (SMD −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13), as shown in Figure 3A . The sensitivity analysis showed that the results were stable, as shown in Figure 4A . The results remained unchanged when studies were merged using a random-effects model.

A total of 5 studies assessed the anxiety level of informal caregivers [ 24 , 31 , 32 , 34 , 35 ]. Due to mild heterogeneity among the included studies ( I 2 =43%; P =.14), a fixed-effect model was adopted to pool the data for analysis. The results demonstrated that telemedicine intervention could reduce informal caregivers’ level of anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39), as shown in Figure 3B . The sensitivity analysis showed that after excluding Badr et al [ 31 ], the pooled results were the opposite, with I 2 decreasing to 0%, as shown in Figure 4B . This could be attributed to a higher risk of bias in this study. However, when merging studies using a random-effects model, the results still retained statistical significance (SMD −0.30, 95% CI −0.57 to −0.03; P =.03).

A total of 5 studies assessed the depression level of informal caregivers [ 24 , 31 - 33 , 35 ]. In the study by Oliver et al [ 33 ], “a” represents the ACCESS intervention and “b” represents the Facebook intervention. Due to moderate heterogeneity among the included studies ( I 2 =51%; P =.07), a random-effects model was used for merging the data. The analysis indicated that the telemedicine intervention did not result in a statistically significant difference in reducing depression among informal caregivers (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51), as shown in Figure 3C . Furthermore, the sensitivity analysis showed that no individual trial could change the results. However, after excluding Badr et al [ 31 ], the I 2 decreased to 0%, as shown in Figure 4C .

QOL of Caregivers

A total of 4 studies that assessed QOL were included in the meta-analysis [ 23 , 24 , 32 , 36 ]. Due to moderate heterogeneity among the studies ( I 2 =73%; P =.01), a random-effects model was used. The results indicated that the telemedicine intervention did not result in a statistically significant difference in improving the overall QOL of informal caregivers (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85), as shown in Figure 3D . Furthermore, the sensitivity analysis indicated that no individual trial could change the results. However, after excluding Chen et al [ 23 ], the I 2 decreased to 0%, as shown in Figure 4D .

Principal Findings

The results of this review indicate that compared to conventional care, telemedicine interventions can alleviate the caregiving burden and anxiety of informal caregivers; however, they do not significantly alleviate depression or improve their QOL. The 95% PIs indicate considerable heterogeneity among the studies, and the effects of future telemedicine interventions on these outcomes remain uncertain, except for reducing caregiver burden.

The results of the study demonstrated that telemedicine interventions could relieve the caregiving burden of informal caregivers, which is consistent with previous research [ 9 , 12 , 31 ]. The systematic review by Hu et al [ 9 ] demonstrates that internet-based interventions can effectively alleviate the stress of informal caregivers of patients with chronic diseases and improve their well-being. Chih et al [ 38 ] developed the Comprehensive Health Enhancement Support System for informal caregivers of patients with advanced cancer. The tool reduced the negative emotions of family caregivers and subsequently decreased their caregiving burden. Caregiver burden consists of both subjective and objective levels. Subjective burden includes the perceived physical, emotional, social, and economic difficulties caused by caring for individuals with serious diseases, whereas objective burden refers to the time and number of tasks devoted to patient care [ 39 ]. Telemedicine facilitates health education, assists in decision-making, helps develop problem-solving skills, and provides social support. It also improves and conserves the resources and time of informal caregivers. Thus, it is conducive to alleviating the caregiving burden at both the subjective and objective levels.

The results revealed that telemedicine interventions can alleviate anxiety in informal caregivers, which is consistent with the findings of previous research [ 8 , 27 ]. Research indicates that the likelihood of anxiety occurring in caregivers of patients with advanced cancer is 3 times that of the general population [ 40 ]. Here, factors such as overwhelming nursing pressure, inadequate self-care, and the lack of supportive care can lead to anxiety [ 41 , 42 ]. Currently, the proposed interventions to reduce the anxiety of informal caregivers focus on psychological education, skill training, and treatment counseling [ 43 ]. In this case, telemedicine enables monitoring, assessing, and managing patient symptoms, which can enhance informal caregivers’ symptom management skills [ 1 , 37 ]. Moreover, it allows them to join discussions on the disease and participate in clinical decisions [ 20 , 33 , 44 ]. This can help satisfy informal caregivers’ information needs and enhance their caregiving confidence and ability. In addition, telemedicine can provide psychological interventions, improve interpersonal relationships, and offer training in stress management skills [ 31 , 32 ], thereby alleviating symptoms of anxiety. However, the sensitivity analysis indicated that the result was unstable. To ensure greater stability, it will be necessary to gather additional data for further investigation.

The results of our research indicate that telemedicine does not have a statistically significant effect on alleviating depression among caregivers, which is consistent with the findings of previous research [ 45 ]. In addition to influencing factors such as the high nursing stress and insufficient social support observed for anxiety, an increased economic burden may also contribute to the onset of depression [ 42 , 46 ]. Despite its potential advantages, telemedicine requires a stable internet connection and available electronic devices. The initial investment cost of such equipment may negatively affect informal caregivers [ 47 ]. Furthermore, researchers only offered counseling on disease knowledge and mental and emotional well-being, but not economic and welfare support. Subsequently, factors including a lower baseline depression level in the study population [ 24 ], small sample size, and significant differences in intervention measures in various studies may negatively impact the combined results. These findings differ from those of Northouse et al [ 48 ], possibly due to variations in the target population. The study by Northouse et al [ 48 ] focused on informal caregivers of patients with cancer. In contrast, our research noted higher loss to follow-up rates in the population with advanced diseases, potentially impeding the discovery of beneficial outcomes. Moreover, Northouse et al [ 48 ] conducted a self-controlled study, whereas we included RCTs in which conventional palliative care can alleviate depression in informal caregivers [ 46 ]. Consequently, the extent to which telemedicine can improve depression is limited.

Quality of Life

This study found that telemedicine does not significantly improve the QOL of informal caregivers of patients in palliative care, which is consistent with the findings of earlier research [ 25 , 49 ]. Most informal caregivers consistently place the needs of patients above their own [ 50 ], leading to various unmet supportive care needs, such as physical, psychological, and social needs [ 6 , 51 ], and a subsequent decline in QOL. As QOL is a multidimensional construct, a multidisciplinary intervention is often more effective than single-faceted approaches. However, the majority of studies (3/4, 75%) in this review targeted interventions at the social-psychological level, and the results might not be ideal. Furthermore, the small sample sizes in the included studies and variations in intervention measures may have limited the possibility of revealing meaningful results. Finally, the effectiveness of intervention measures may further be moderated by other factors such as the characteristics of informal caregivers, preexisting mental health issues, and the caregiver-patient relationship. Therefore, future efforts should aim to devise personalized interventions for specific informal caregiver populations to ensure the best possible support.

Strengths and Limitations

This study meticulously adhered to the systematic review writing process, developed a comprehensive search strategy, and selected appropriate methods for meta-analysis. To enhance the reliability of the results, only RCT studies were included. However, this review also had limitations. First, we only included available data for the analysis. Missing data may impact the combined results of the meta-analysis. Second, some included studies, especially pilot studies, have small sample sizes, which requires a cautious approach to generalizing the results. Third, the inclusion of only English- and Chinese-language articles may lead to publication bias. Last, the included studies all measured the results immediately after intervention, without evaluating the persistence of the intervention effect. Therefore, in the future, large samples and high-quality research are required to further validate the intervention effects of telemedicine and explore the most suitable intervention duration for informal caregivers.

Implications for Practice and Future Research

The findings indicated that telemedicine interventions have beneficial effects on the informal caregivers of patients in palliative care. We recommend that professional palliative care personnel consider the needs of informal caregivers, incorporating telemedicine into care plans to optimize and complement existing health care measures. When implementing such interventions, several considerations arise. First, the needs of informal caregivers are diverse and require multidisciplinary team collaboration. Second, personalized interventions should be tailored based on the demographic characteristics of informal caregivers. Finally, cost-effectiveness should be considered. In this regard, we suggest that relevant organizations establish regulations to minimize health care costs as much as possible.

Moreover, a theoretical or conceptual framework can provide the foundation of interventions, drive their development, and facilitate the prediction and explanation of their mechanism to achieve the desired effect [ 22 ]. For example, in the included studies, Badr et al [ 31 ] conducted a study based on self-determination theory. The authors hypothesized that telephone-based psychosocial interventions could improve the mental state and burden of patients and informal caregivers. Those results were statistically significant. The study by Pensak et al [ 35 ] was based on cognitive behavioral stress management theory and provided stress management training to alleviate informal caregivers’ burden. In contrast, studies lacking theoretical support failed to improve patient and informal caregiver outcomes. Therefore, it is recommended that researchers have a relevant theoretical foundation when devising intervention measures to enhance the intervention effect, which will be more likely to benefit informal caregivers.

In summary, telemedicine can alleviate caregiving burden and anxiety in informal caregivers but does not significantly impact their depression and QOL. Despite certain outcomes lacking statistical significance, they retain clinical relevance for those engaged in family palliative care. We believe that support provided through telemedicine represents a viable means to ensure the continuity of care, address the needs of informal caregivers, and foster favorable outcomes. Future studies that involve large samples and high-quality research are still required to further validate the effects of telemedicine. Furthermore, intervention measures should be designed with a solid theoretical basis to the fullest extent.

Acknowledgments

This study was supported by the scientific research project of the Chinese Nursing Association (ZHKY202101). The funder had no role in the study design, data extraction process, data analysis, results interpretation, or manuscript preparation.

Authors' Contributions

X Yang and X Yu were responsible for the topic and design of this review. X Yu obtained funding, and X Yang drafted the manuscript. X Yang, XL, and SJ performed the study selection and data extraction. X Yu supervised the project. All authors were responsible for the analysis and interpretation. All authors reviewed and approved the final manuscript.

Conflicts of Interest

None declared.

Search strategy.

Characteristics of the included studies.

PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist.

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Abbreviations

Edited by Lorraine Buis; submitted 03.11.23; peer-reviewed by Carlos Laranjeira, Shumenghui Zhai; final revised version received 28.02.24; accepted 28.02.24; published 08.04.24.

© Xiaoyu Yang, Xueting Li, Shanshan Jiang, Xinying Yu. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 8.4.2024.

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