Study Design
A systematic review of research priorities in palliative care was undertaken and guided by the PRISMA statement for reporting systematic reviews (38) .
Search Strategy
A systematic search of databases from health sciences, medicine, and psychology was undertaken in August 2017 in conjunction with a subject librarian. Six databases were searched: Cumulative Index of Nursing and Allied Health Literature (CINAHL), Excerpta Medica database (EMBASE), PubMed, SCOPUS, Web of Science, and PsycINFO. Grey literature was identified via ProQuest Dissertations and Theses, CareSearch grey literature, James Lind Alliance Website, Lenus, and the Palliative Hub of the All Ireland Institute of Hospice and Palliative Care. A further search of the grey literature was conducted on the following sites in April and May 2019: OpenGrey, European Association of Palliative Care (EAPC) conferences, Australian and New Zealand Society of Palliative Medicine and Google.
Key words were identified through the titles, abstracts, and indexed phrases of relevant articles from a preliminary search of PubMed and CINAHL. Indexed terms from the selected databases were identified and included in the search terms for these specific databases (Table 1). Articles were limited by publication date (January 2008- June 2019) and language (English). Subsequently, indexed terms (e.g., CINAHL headings, Mesh terms) from the selected databases were identified and included in the search terms for these databases.
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Screening
The search yielded 10,325 articles from which 2007 duplicates were removed (Figure 1). Two reviewers (EN and FH) uploaded titles and abstracts of the remaining 8318 papers into Covidence for initial screening, of which 8252 were considered irrelevant and excluded. Four reviewers (EN, DM, FH and OB) screened the full texts of the remaining 66 articles against the review’s inclusion/exclusion criteria (Table 2).
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Ten studies were eligible, and they were included for quality appraisal (see figure 1). Any conflict of opinion regarding which article to include or exclude was resolved through discussion among the reviewers. If no agreement could be reached between the reviewers, a fifth reviewer (SM) mediated.
Quality Appraisal and Risk of Bias
The quality, methodological rigour, and risk of bias of the ten studies included in the final review were assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Tools (39). JBI critical appraisal tools were selected based on their appropriateness to the methodology in the papers. The qualitative research tool (40) was utilised for papers using workshops, the systematic review tool (41) was used for evidence reviews, and the cross-sectional research tool (42) for research using surveys and questionnaires. To prevent the introduction of bias and enhance transparency, four studies (21,45,49,50), adopting multiple methods and consensus methods, were not subject to quality appraisal due to a lack of specific tools. No study was excluded based on quality.
Quality assessment for included studies was completed independently by EN & DM. Any unresolved variances were resolved by a third author (FH). These appraisals were summarised respectively and presented the grading using a range of coding systems. A coding system of 0–10 was applied to three papers; 8–10 was considered high quality, 4–7 moderate and below 4 poor. Of the three papers one was considered high and two moderate quality. Two papers were accessed using a coding system of 0–8: 7–8 was considered high quality, 6–4 moderate and 3–1 poor. The two papers were each accessed as moderate quality. The remaining paper was accessed using coding system of 1–11; 8–11 was considered high quality, 4–7 moderate and below 4 poor. In terms of quality this paper was rated as high quality (see table 3).
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Data Extraction
A data extraction form was developed on Microsoft Word to extract key data from the included studies. Data extracted included author, year, and aim of the study, geographical location, participants, method, data analysis and priorities identified. Three reviewers (EN, DM and OB) independently extracted data from the final ten papers using the data extraction form and any disagreements were resolved through discussion. A fourth reviewer (FH) was consulted if an agreement could not be reached.
Data Synthesis
Categorical data including year, country, participants, and method were extracted and analysed in Microsoft Excel. Qualitative data underwent a thematic synthesis (37) to integrate the findings of multiple studies and identify which priorities were the most common across the ten included papers and this allowed for the development of higher order themes. Synthesis included line by line coding of the findings of the primary studies, and the categorisation of codes into broad groups of research priorities followed by descriptive themes (37,43). The final stage in the analysis was the development of broad analytical themes.