El problema temporal

My initial intention had been to undertake a systematic review exploring the concept of the rural good death, from the perspectives of rural residents, in order to answer the research question “What is a ‘good rural death’?” However, due to the very small number of relevant articles identified, a scoping review approach was chosen.

Currently, there is no standardised definition or methodology for scoping reviews (Peters et al., 2015) so the definition commonly applied is that first described by Mays et al. and cited and used by Arksey and O’Malley (2005, p. 5). They describe a scoping review as one that aims:

To map rapidly the key concepts underpinning a research area and the main sources and types of evidence available, and can be undertaken as stand-alone projects in their own right, especially where an area is complex or has not been reviewed comprehensively before.

The protocol used in my review was based on the methodological framework first described by Arksey and O’Malley (2005),enhanced by Levac et al. (2010), Daudtet al.

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(2013) and Colquohoun et al. (2014), and later refined by the Joanna Briggs Institute (JBI, 2015). The original (Arksey & O’Malley, 2005) and modified (Levac et al., 2010) frameworks consist of six stages (JBI, 2015):

1. Identifying the research question by clarifying and linking the purpose and research question.

2. Identifying relevant studies by balancing feasibility with breadth and comprehensiveness of the scoping process.

3. Study selection using an iterative team approach to selecting studies and extracting data.

4. Charting the data by incorporating a numerical summary and qualitative thematic analysis.

5. Collating, summarising and reporting the results, including identifying the implications for policy, practice and research.

6. An optional consultation exercise between stakeholders.

In recent years, scoping reviews have become increasingly popular. To ensure scoping reviews are validate and reliable, Tricco et al. (2016)have identified the need for standardised reporting guidelines. However, at the time of my scoping review no guidelines existed. Therefore, the reporting of my scoping review was based on the 2016 scoping review published by Tricco et al., the team developing the standardised reporting guidelines, the Preferred Reporting Items for Systematic Reviews and Meta- Analysis-Scoping Review (PRISMA-ScR) guidelines (Equator Network, 2016).While quality assessment is not a requirement of the JBI guidelines, it was included in my published review (Levac et al., 2010; Daudt et al., 2013); however, the optional consultation stage was omitted.

4.2.1.1 Eligibility criteria

Scoping reviews have a broad approach and include any existing literature, including both published (primary research studies, observational studies, reviews) and relevant unpublished (grey literature) articles, regardless of study design, discipline or quality. To answer my scoping review research question, I developed eligibility criteria, using the Participants, Concept and Context (PCC) acronym outlined in the JBI guidelines (2015):

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 Participants: Rural residents, including rural patients with a life-limiting illness, rural FCGs, rural HCPs and the wider rural community, as these are the most appropriate to provide the rural perspective. No age filter was applied.

 Concept: The principal concept under review was the ‘good death’ in a rural setting, as described through the personal experiences or perspectives of rural residents; collected by interviews, surveys or extensive field work observations. The term ‘good death’ was either used explicitly or implied.

 Context: Rural or remote; all countries and territories were considered; no standardised definition of rurality was used. Articles that included urban and rural data were considered providing the rural data were clearly identifiable.

4.2.1.2 Information sources and search strategy

Five electronic databases (PubMed, CINAHL, Scopus, PsycINFO, and Web of Science) were searched from 2nd January through 14th February 2016. A literature review update was undertaken in early March 2017, by accessing the same data bases and searching for articles published from 15th February 2016 to 28th February 2017. An iterative process was used with “peaceful death” omitted from the original search. The following keywords and Medical Subject Heading (MeSH) terms were used in the final search: (“good death” OR “managed death” OR “good enough death” OR “tamed death” OR “dying well” OR “peaceful death”) AND (Rural OR Remote). All study designs were included; no date filter was applied; only English language papers were included.

The initial search identified 377 articles. These were downloaded to ENDNOTE X7, merged and duplicates deleted (338 articles). The reference lists of all retained articles were scanned for additional studies. Recent issues (July 2014 - Jan 2016) of eight relevant journals (Palliative Medicine, Journal of Palliative Medicine, Palliative and Supportive Care, Australian Journal of Rural Health, Journal of Rural Health, Social Science and Medicine, Health and Place, and Death and Dying) were hand searched. Cochrane Library, CareSearch database and OpenGrey repository were searched for grey literature. Authors of three studies reporting mixed geographical data were contacted; however, rural data were not specified, and so these three articles were excluded from the review. The literature search update followed the same format and identified 19 papers, including my own published paper. On review of titles and

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abstracts no suitable papers were found to add to this scoping review. The remainder of the selection process is illustrated in the flow chart (Figure 4.1).

Figure 4.1. Flow diagram of scoping review selection process including reasons for exclusion. (Source: modified flow chart as described by Moher et al., 2009)

4.2.1.3 Assessment of quality

To ensure valuable insights reported in lower quality studies are not excluded, the current scoping review methodological guidelines do not require a formal quality assessment of eligible articles. However, a quality assessment was conducted in this review to assist in validating the quality of the literature informing my report. After an initial assessment was made, my four supervisors independently assessed each paper. Differences were discussed by email and resolved by consensus. All eligible articles

Phase 1 screening♦: Titles reviewed independently by SR and one supervisor Articles after searches merged, duplicates

removed (n =338)

Irrelevant (n=290)

Phase 2 screening♦: Abstract and/or full- text articles assessed independently for eligibility by SR and supervisors (n=48)

Articles identified through database searching (n =377)

Articles excluded (n =35)

 Not good death (16)

 Not rural (2)

 Rural data not identified (4)

 Not relevant (4)

 Duplicate [poster] (2)

 Workshop abstract (1)

 No personal perspectives (6) Eligible studies (n =13)

Studies added through hand search of references and journals (n=7); Grey literature search (n=0)

Articles included in scoping review (n=19) reporting 17 separate studies. (15 qualitative, 1 quantitative, 1 mixed methods.)

Literature search update; 19 papers identified; nil suitable to add to the review.

Systematic

review (n=1) _{♦ Differences were discussed via email} and resolved by consensus

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were retained in this scoping review, regardless of their quality. Some high-quality studies received a lower score, as the assessment was based on aspects relevant to the rural ‘good death’, and not of the study per se. All studies identified for the scoping review were rated to be of low, medium or high quality based on a simple scoring system described by Hawker et al. (2002) and modified by Gomes et al. (2013). Two additional items were added to account for the rural ‘good death’ focus: (1) clarity of rural definition and (2) validity of informant (prospective=2, retrospective =1, well community=0). The scoring card can be found in Appendix2.

4.2.1.4 Synthesis

The synthesis included both a quantitative analysis of the actual scoping review and a qualitative analysis of the content of the included articles (Appendix 3). A thematic analysis of the content was conducted by downloading the eligible articles into NVivo- 10, and coding for major themes. Findings were reported narratively. Due to

heterogeneity within a small number of studies, a meta-analysis and analysis according to informants were not possible. Some informant groups had only one study identified. The qualitative results of the scoping review were described in Chapter Two (Section 2.4). The published paper can be found in Appendix 6.