Article Text

Protocol
Experiences and perspectives of healthcare professionals, patients and caregivers toward the serious illness conversation guide: protocol for a qualitative meta-synthesis
  1. Liu Yang1,
  2. Nanxi Zhu1,2,
  3. Xianlin Wang3,
  4. Jin Tan3,
  5. Liuliu Chen4,
  6. Cui Su3,
  7. Tiaoxia Dong3,
  8. Bingjie Long2,
  9. Yeyin Qiu5,
  10. Renli Deng1,3
  1. 1Department of Emergency, Affiliated Hospital of Zunyi Medical University, Zunyi, China
  2. 2Department of Neonatal Medicine Center, Xiamen Children’s Hospital, Xiamen, China
  3. 3Department of Nursing, Zunyi Medical University, Zunyi, China
  4. 4School of Health, Zhuhai College of Science and Technology, Zhuhai, China
  5. 5Fifth Affiliated Hospital of Zunyi Medical University, Zhuhai, China
  1. Correspondence to Professor Renli Deng; 690891192{at}qq.com

Abstract

Introduction Exploring the experiences and perspectives of healthcare professionals, patients and caregivers toward serious illness conversations based on the Serious Illness Care Program is vital for improving communication with patients who are seriously ill, as has been shown in previous studies. However, few studies have carried out a systematic review to examine common themes, strengthen conclusions and identify gaps in the literature, the findings of which could help steer further research, policies and practice to improve more timely and person-centred conversations about the values and priorities of patients with serious illnesses. The objective of this qualitative meta-synthesis is to explore how healthcare professionals, patients and caregivers described their own experiences of the processes of serious illness communication through a secondary analysis of published qualitative data.

Methods and analysis Meta-aggregation will be used to conduct a systematic review of qualitative studies. We conducted an initial search on 10 October 2023; papers published in English will be searched using electronic databases, including PubMed (MEDLINE), Web of Science, Embase, Ovid and CINAHL. Studies that satisfy the eligibility criteria will be evaluated for methodological quality using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. The meta-aggregative review will consist of the following: (1) extraction of findings of all included studies; (2) categorisation of the findings, with at least two findings per category; and (3) synthesis of one or more findings from at least two categories. Study eligibility screening, data extraction, analysis and JBI Critical Appraisal Checklist and Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research assessments will be undertaken independently by two authors.

Ethics and dissemination Secondary data analysis of published literature does not require ethical approval. The results will be disseminated in peer-reviewed journals and presented in conference papers and elsewhere.

PROSPERO registration number CRD42022330859.

  • QUALITATIVE RESEARCH
  • Adult palliative care
  • Nursing Care
  • Protocols & guidelines
  • ONCOLOGY
  • Systematic Review
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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • This is the first meta-synthesis of qualitative research on the experiences and perspectives of healthcare professionals, patients and caregivers toward serious illness conversations in the context of the Serious Illness Care Program.

  • Confidence in the qualitative meta-synthesis findings will be strengthened by the use of the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research approach.

  • The scope of the research will be limited by the exclusion of studies not written in the English language and grey literature.

  • The synthesis of the findings will rely on the data presented in each of the included studies, which may not reflect the full analysis of the original data.

Introduction

Serious illness is defined as carrying a high risk of mortality within 1 year, having a strong negative influence on quality of life and functioning, and being highly burdensome to patients and their families.1 2 Many patients with serious illnesses lack the opportunity to express their wishes for end-of-life treatment, and they often receive different degrees of invasive treatment in the last 6 months of life or even on the day of death. These treatments often have no meaningful effect on prolonging life or improving quality of life, while increasing patients’ pain and economic burden on their families.3 With the rapid development of medical technology, the overall survival time of patients with serious illnesses has been extended, but quality of life is low. This may be related to poor communication, emotional distress and inconsistencies between the type of care required and the type of care received by most patients with severe serious illnesses.4–6

Throughout the progression of a serious illness, effective communication plays an important role in promoting adaptation to the realities of the illness, appropriate decision-making and quality of life. As patients near the end of life, communication about care goals and plans is a key element in helping to ensure that they receive care that is consistent with their goals, reduces their anxiety and is supported by their families. Effective communication facilitates not only end-of-life care but also quality of life throughout the disease trajectory. Early quality care goal conversations (eg, end-of-life discussions, advance care planning, Respecting Choices, Living Matters, etc) have been shown to have numerous potential benefits, such as promoting end-of-life care decision-making, improving care with consistent goals, improving the quality of end-of-life care and death, and reducing overtreatment.7–13 One study showed that 68% of older patients considered their medical care preferences during illness and hospitalisation, but only 9% of older patients discussed their end-of-life care preferences with a primary care physician.14

Barriers to serious illness communication in primary care reported in the literature, including staff factors (eg, lack of knowledge and training on communication, clinical workload, fear of harm to patients, uncertainty about prognosis), patient factors (eg, anxiety, denial, low end-of-life care literacy) and system complexities, lead to workflow barriers that impede communication, including time constraints, inaccessible documentation in the electronic medical record (EMR) and competing priorities.15–22 The timing and content of these discussions are often flawed, with many occurring during acute hospitalisation and late in the course of the disease. Physicians also tend to focus critical conversations on care choices, such as resuscitation or intubation, rather than patients’ values and goals.23 24

To help seriously ill patients have more, better and earlier conversations with their clinicians about their goals and values, Ariadne Labs developed the Serious Illness Care Program (SICP),25 an intervention with a multicomponent structured design, to (1) identify patients at high risk of death in the next year; (2) train clinicians in using the SICP to structure advance care planning discussions with patients; (3) ‘trigger’ oncology clinicians to have conversations using a guide with enrolled patients; (4) prepare patients for conversations by providing them with a letter encouraging them to think about some of the topics raised in the SICP guide; (5) guide clinicians in conducting conversations about values and goals; (6) document outcomes of the discussions in a structured format for the EMR; and (7) provide patients with a family communication guide to facilitate their discussion with their loved ones at home.25 One of the major components of the SICP is the patient-centred conversation guide, which focuses the conversation on goals and values, involves sharing prognosis according to individual information preferences, de-emphasises treatment decisions and builds a foundation for future values-based medical decisions. The SICP has been studied and implemented in a variety of settings, including outpatient primary care,26 27 oncology28–32 and hospitalised medical patients.33

In a cluster randomised clinical trial, the SICP achieved more, earlier and better-quality conversations in an outpatient setting and reduced anxiety and depression among patients with advanced cancer,28 29 and the implementation of the SICP in the primary care setting led to decreased health expenditures at the end of life.34 However, ongoing patient, provider and system-level barriers have affected the widespread uptake of this initiative. Research is increasingly examining the experiences and perspectives of healthcare professionals, patients and caregivers toward serious illness conversations based on the SICP. One study sought to understand the experiences and perceptions of patients who had an SICP conversation with their oncology clinician,32 while another study reported clinicians’ perspectives after the implementation of the SICP,33 and another explored how patients with multiple myeloma and their caregivers experienced serious illness conversations.35 Direct data from healthcare professionals, patients and caregivers regarding their experiences with serious illness conversation interventions can provide valuable insights that may fill gaps regarding how this intervention works, and consequent clinical trial findings can be replicated and widely adopted in routine practice. To our knowledge, there have been no comprehensive syntheses of the experiences and perspectives of healthcare professionals, patients and caregivers toward serious illness conversations in the context of the SICP. The proposed meta-synthesis of qualitative research data aims to help address this gap.

Methods

Meta-aggregation will be used to examine primary qualitative research and qualitative components of mixed-methods research on healthcare professionals’, patients’ and caregivers’ views of the Serious Illness Conversation Guide.36 The protocol will be presented in accordance with the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols checklist37 (see online supplemental appendix I). The Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement will be followed.38 Studies that satisfy the eligibility criteria will be evaluated for methodological quality using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. The report of findings for this review will be published following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.39 The protocol for this meta-synthesis was prospectively registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42022330859) and can be accessed in full at https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022330859

Search strategy

The JBI three-step search strategy will be used for the literature search.40 For step 1, a preliminary search of the PubMed database will be performed on 10 October 2023, analysing the titles, abstracts and subject terms in the articles. For step 2, a comprehensive search will be undertaken across all included databases using keywords and index terms; the databases will include PubMed (MEDLINE), Web of Science, Embase, Ovid and CINAHL. This task would be finished on 13 October 2023. For step 3, all reference lists of the included literature published before 13 October 2023 will be searched to complement other relevant literature. The search strategy for databases is shown in online supplemental appendix II.

Inclusion and exclusion criteria

The inclusion criteria will include the following: (1) participants: healthcare professionals, patients and caregivers who have used the Serious Illness Conversation Guide; (2) phenomenon of interest: the experiences, perspectives and attitudes of healthcare professionals, patients and caregivers toward serious illness conversations, including healthcare professionals’ challenges, needs, barriers and facilitators in implementing the guide, and patients’ and caregivers’ understanding of its components and processes; (3) context: healthcare professionals, patients and caregivers, and the components and processes of the guide; (4) qualitative studies: including, but not limited to, ethnographies, phenomenologies, narrative studies, grounded theory and case studies; additionally, for mixed studies, only qualitative data will be included; and (5) language: studies published in English.

The exclusion criteria will include the following: (1) studies in languages other than English; (2) quantitative studies and quantitative data; (3) focused on other descriptions of serious illness conversations; (4) focused on the training and effectiveness evaluation of the guide; (5) irrelevant to the research topic and (6) full text was not found.

Identification and selection of studies

The results of the electronic database searching will be imported to EndNote V.X9 reference management software and will use the automated ‘Find Duplicates’ function to exclude any duplicates. The literature will be independently screened by two researchers (LY, NZ) trained in systematic review methodology, who will read the titles and abstracts for the preliminary screening, and then read the full texts for secondary screening and eligibility using a standardised form. Ineligible studies will be excluded, and the reason for exclusion will be recorded. Eligible studies will be included in the analysis. Differences encountered during the screening process will be resolved by the two investigators through negotiation or by discussion with a third investigator (RD). The screening process will be reported using a PRISMA flow chart. We plan to complete the selection of studies on 30 November 2023.

Assessment of the quality of the included studies

Two researchers (LY, NZ) will independently use the JBI Critical Appraisal Checklist to assess the methodological quality of the included studies. This critical appraisal instrument contains 10 questions addressing the possibility of bias in research design, conduct and analysis. Each question is rated ‘yes’, ‘no’, ‘unclear’ or ‘not applicable’. Studies fully meeting the above criteria, indicating a low risk of bias, will be graded A. Studies partially meeting the criteria, indicating a moderate risk of bias, will be graded B. Finally, studies not meeting the above quality standards at all, indicating a high risk of bias, will be graded C. Studies with grades of A and B will be included in the qualitative meta-synthesis. Differences encountered by the two investigators (LY, NZ) during the evaluation process will be resolved through negotiation or discussion with a third investigator (RD).

Data extraction

Two researchers (LY, NZ) will independently extract data according to the JBI standardised form, including study (year), country, design (data collection method), phenomenon of interest, recruitment and participants, and main findings, including relevant illustrative quotations. Disagreements will be resolved through negotiation or by discussion with a third investigator (RD).

Data synthesis

The JBI meta-aggregation method will be used to synthesise the data. Meta-aggregation is one approach that can be used to synthesise qualitative evidence based on the primary author’s findings and is a useful method for generating recommendations for action.36 This approach focuses on the integration of the findings from processed data rather than raw data collected from participants. Extracting findings is the first step in data synthesis.36 First, on the premise of fully understanding the philosophy and methodology of qualitative research, two reviewers (LY, NZ) will repeatedly read, analyse and interpret the meaning of the findings identified as highly correlated with the phenomenon of interest extracted from each study. As a finding is extracted, the two reviewers (LY, NZ) will independently assign a credibility level for each research finding. The three levels of plausibility will be as follows: (1) unequivocal (findings accompanied by an illustration that is beyond reasonable doubt and are therefore not open to challenge), (2) credible (findings accompanied by an illustration that lacks a clear association with the findings and are therefore open to challenge) and (3) unsupported (findings are not supported by data). If more than one quotation is included for the same finding, the highest level of credibility will be assigned (unequivocal>credible>unsupported). Second, findings rated unequivocal or credible will be aggregated into categories based on the principle of similarity merger. The original research results will be summarised to form a general category. Finally, by analysing the relationships between the categories, the final integration results will be synthesised. To minimise potential bias, the whole process will be reviewed and discussed by the research team.

Assessment of confidence in the evidence

The ConQual evidence grading method will be used to grade the quality of evidence of the synthesised findings(https://jbi-global-wiki.refined.site/space/MANUAL/4689627/2.7.3+ConQual+'Summary+of+Findings').41 Confidence level will be rated high, moderate, low or very low based on the dependability and credibility of the included studies. Assuming that the integration results will be of high quality, the reviewers will downgrade the results based on the evaluation of reliability and credibility, and, finally, will determine the quality level of the evidence in the integration results.

The reliability of the included studies will be evaluated according to items 2, 3, 4, 6 and 7 of the quality evaluation criteria. If four or five items are ‘yes’, the rating will remain unchanged. If two or three items are ‘yes’, the rating will be downgraded to one level. If zero or one item is ‘yes’, the rating will be downgraded to two levels.

The credibility assessment of each research finding will be determined based on the congruity between the studies’ interpretation of the findings and the participants’ quotations. If the integration results contain only ‘unequivocal’ original research results, the rating will remain unchanged; if ‘unequivocal’ and ‘credible’ results are included, the rating will be downgraded to one level; if only ‘credible’ results are included, the rating will be downgraded to two levels; results that are ‘unsupported’ will be downgraded to three levels; and if all results are ‘unsupported’, the results will be downgraded to four levels.

Patient and public involvement

The qualitative meta-synthesis will involve a secondary analysis of publicly available primary data; consequently, there will be no participant or public involvement.

Results

The results section will report the results of the literature search and screening, the basic characteristics of the included studies, the methodological quality evaluation of the included studies and the results of the meta-synthesis integration.

Ethics and dissemination

Secondary data analysis of published literature does not require ethical approval. The results will be disseminated in peer-reviewed journals and presented in conference papers and elsewhere.

Significance and impact of this review

This review represents a novel approach to the study of serious illness conversations.

Ethics statements

Patient consent for publication

References

Supplementary materials

  • Supplementary Data

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

  • Supplementary Data

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

Footnotes

  • Contributors LY conceived the idea for the qualitative meta-synthesis. LY, NZ and XW will be responsible for the study design. LY, NZ and RD will develop the search strategy. JT and LC will develop the methods. LY will draft the protocol manuscript with input from JT, LC and RD. All authors (LY, NZ, XW, JT, LC, TD, CS, BL, YQ and RD) will provide critical revisions and approve the final manuscript.

  • Funding This work was supported by the National Natural Science Foundation of China (grant number 72274235) and the Zunyi City Science and Technology Plan Project (Zunshi Kehe HZ Character (2021) nos. 138 and 158).

  • Competing interests None declared.

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

  • Provenance and peer review Not commissioned; externally peer reviewed.

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