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      The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

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          Abstract

          Background:

          Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting.

          Aim:

          To understand patient, family, clinicians’ and volunteers’ experience of delirium and its care in palliative care contexts.

          Design:

          Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417).

          Data sources:

          The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers.

          Results:

          A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high ( n = 5), medium ( n = 8) or low ( n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians’ responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care.

          Conclusions:

          Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients’ multi-dimensional needs to be met.

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          Most cited references68

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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.

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            Methods for the thematic synthesis of qualitative research in systematic reviews

            Background There is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies. Methods We describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved. Results We used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses. Conclusion We compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.
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              Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ

              Background The syntheses of multiple qualitative studies can pull together data across different contexts, generate new theoretical or conceptual models, identify research gaps, and provide evidence for the development, implementation and evaluation of health interventions. This study aims to develop a framework for reporting the synthesis of qualitative health research. Methods We conducted a comprehensive search for guidance and reviews relevant to the synthesis of qualitative research, methodology papers, and published syntheses of qualitative health research in MEDLINE, Embase, CINAHL and relevant organisational websites to May 2011. Initial items were generated inductively from guides to synthesizing qualitative health research. The preliminary checklist was piloted against forty published syntheses of qualitative research, purposively selected to capture a range of year of publication, methods and methodologies, and health topics. We removed items that were duplicated, impractical to assess, and rephrased items for clarity. Results The Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement consists of 21 items grouped into five main domains: introduction, methods and methodology, literature search and selection, appraisal, and synthesis of findings. Conclusions The ENTREQ statement can help researchers to report the stages most commonly associated with the synthesis of qualitative health research: searching and selecting qualitative research, quality appraisal, and methods for synthesising qualitative findings. The synthesis of qualitative research is an expanding and evolving methodological area and we would value feedback from all stakeholders for the continued development and extension of the ENTREQ statement.
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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                30 March 2021
                June 2021
                : 35
                : 6
                : 988-1004
                Affiliations
                [1 ]Department of Health Sciences, University of York, York, UK
                [2 ]School of Nursing, The University of Notre Dame Australia, Sydney, NSW, Australia
                [3 ]The Cunningham Centre for Palliative Care, St Vincent’s Health Network, Sydney, NSW, Australia
                [4 ]Hull York Medical School, University of York, York, UK
                [5 ]School of Social Work, Carleton University, Ottawa, ON, Canada
                [6 ]Department of Medicine, Division of Palliative Care, University of Ottawa, Ottawa, ON, Canada
                [7 ]Bruyere Research Institute, Ottawa, ON, Canada
                [8 ]Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada
                [9 ]Department of Palliative Care, Bruyere Continuing Care, Ottawa, ON, Canada
                [10 ]Institute of Population Health Sciences, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK
                [11 ]Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
                Author notes
                [*]Imogen Featherstone, Department of Health Sciences, University of York, ARRC Building, York YO10 5DD, UK. Email: imogen.featherstone@ 123456york.ac.uk
                Author information
                https://orcid.org/0000-0002-9042-7600
                https://orcid.org/0000-0003-1674-2124
                https://orcid.org/0000-0001-5898-0900
                https://orcid.org/0000-0001-6204-9158
                Article
                10.1177_02692163211006313
                10.1177/02692163211006313
                8189008
                33784915
                d4681e08-11e8-4edd-a2a6-e7061ec6ada1
                © The Author(s) 2021

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: National Institute for Health Research Doctoral Fellowship, ;
                Award ID: DRF-2017-10-063
                Categories
                Review Articles
                Custom metadata
                ts1

                Anesthesiology & Pain management
                delirium,palliative care,qualitative research,systematic review

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