Family Practice Vol. 20, No. 3, 304-310
© Oxford University Press 2003
Health Services Research |
Organizing palliative care for rural populations: a systematic review of the evidence
Department of Primary Care, University of Wales Swansea Clinical School, Swansea SA2 8PP and
a Ceredigion and Mid Wales NHS Trust, Bronglais Hospital, Aberystwyth, Ceredigion SY23 1ER, UK.
Correspondence to Rhodri Evans; E-mail: rhodri.evans{at}btinternet.com
Evans R, Stone D and Elwyn G. Organizing palliative care for rural populations: a systematic review of the evidence. Family Practice 2003; 20: 304–310.
Received 29 April 2002; Revised 7 October 2002; Accepted 13 January 2003.
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Abstract |
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Background. Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known, however, either of their views or of how best to organize palliative care in rural areas.
Objective. The aim of this study was to conduct a systematic literature review of studies that have examined the organization of rural palliative care and the views of professionals in rural areas.
Method. Six electronic databases were searched for published studies between 1991 and 2001. Articles had to match against (i) MeSH or keyword terms relating to palliative, terminal or end of life care; and (ii) MeSH or keyword terms relating to rural. A data extraction framework was designed and used systematically by two reviewers to consider research question and method, sample characteristics, selection and size, study quality, summary results and implications.
Results. Twenty-six studies were identified. These were mostly questionnaire surveys and reports, and three qualitative studies. No randomized controlled studies or cohort studies were identified. Education and strategic issues were dominant research questions. Both the sample numbers and response rates in the surveys were variable. The qualitative studies had methodological strengths and elicited important views from nurses, carers and families. GPs were, however, unrepresented. Whilst the role of primary care emerged as an important theme, primary care professionals reported difficulties in obtaining education and training. There were also reported problems in symptom control and in the management of emotional issues such as bereavement counselling. Difficulties were also described in accessing specialist services such as hospices, and families were reported as having problems in accessing information. Developments in information technology such as telemedicine were seen as possible solutions to some of the problems.
Conclusions. There is little published work on this topic. Most of the work identifies problems in the delivery of palliative care in rural areas. Whilst primary care professionals are seen as having a key role, there is a need to discover both their views and their needs in this field.
Keywords. Palliative care, rural, systematic literature review.
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Introduction |
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Palliative care services, in both primary and secondary care, have developed mostly in urban areas, where the population density allows specialist palliative care staff to work alongside nursing and medical personnel, providing skills, advice and continuing education. In addition, there are hospices, a uniquely urban phenomenon in which palliative care services tend to be focused. The challenges involved in organizing palliative care in rural areas compared with urban areas relate to differences in environment, infrastructure and resources.1,2 The population is thinly distributed over large areas, with few specialists.1 Consequently, primary care professionals, and more specifically GPs and district nurses, play crucial roles in both organizing and delivering palliative care services.
Solutions to the problem of organizing palliative care in rural areas will require evidence, both of professional views about how services should be organized and evaluations of differing models of palliative care provision in rural areas. It was therefore imperative to consider the research base, to examine the underlying assumptions and models, and to assess previous work in this field, both in the UK and internationally. The aim of this study was to conduct a systematic literature review of studies that have examined the organization of palliative care in rural areas.
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Method |
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We were interested specifically in work undertaken in rural contexts, and therefore searched for studies that had evaluated palliative care services and those that examined professional views about the organization of palliative care services in these settings (see Box 1
for definitions of rurality, palliative care and the health professional disciplines considered in this review). | Box 1 Definitions of terms used in the review Rurality is defined by population sparsity (low density) and remoteness (distance between a given area and the nearest urban centre. There are no agreed quantifications for these measures, and self-reported rurality had to be assessed qualitatively in the studies.1,3,4 Palliative care is defined as the care of any individual who has a progressive, life-threatening disease.5 Health professional refers to GPs and district or community nurses.6
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Search strategy
The following databases were searched (1991–2001): Medline, Cancerlit, CINAHL, Cochrane Library, Embase and the TRIP (Turning Research Into Practice—an evidence-based search engine) database.7 The search strategy for the databases required articles to match against (i) MeSH or keyword terms relating to palliative, terminal or end of life care; and (ii) MeSH or keyword terms relating to rural. The abstracts of cited articles were scrutinized initially for possible inclusion. If deemed to be potentially eligible, full text versions were read by two reviewers (RE and DS). In addition, the reference lists of these articles were also searched for other possible citations. Leading authors in the field were also contacted directly, and asked to contribute any relevant unpublished work. This included a systematic review of the effectiveness of palliative care teams8 and a related ‘grey literature’ search.9
Inclusion and exclusion criteria
All articles that evaluated palliative care services in rural settings or which reported the views of professionals about the organization (proposed or desired) were included. No methodological exclusion criteria were used as it was anticipated that the number of articles would be small. The search terms (rurality, palliative care, health professional) had to meet the definitions as set out in Box 1. Studies in non-English language journals or those which reported work from developing countries were excluded.
Data extraction
A data extraction framework was designed and each study independently examined by the two reviewers (RE and DS). The following categorization was used: research question (as set out in the aims); research method (type of study e.g. survey, randomized control trial, qualitative study, etc.); sample characteristics, selection and size; geographical factors (country of origin, rural/urban); study quality (e.g. response rates); summary results (effect sizes where reported); and implications. Results from mixed urban/rural studies were divided into urban and rural data and extracted separately. In order to assess the methodological quality systematically, quality assessment guidelines from the NHS Centre for Reviews and Dissemination10 were followed, and a checklist by Greenhalgh and Taylor11 used for the qualitative studies.
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Results |
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A summary of the results is shown in Box 2
. Twenty-six studies were identified by the search methods; they are described in Table 1, categorized into surveys (102,12–20), qualitative studies (three21–23 ) and other quasi-research reports (1324–36). No case–control, cohort or randomized control studies were found. There were no meta-analyses or indeed any formal literature review of rural palliative care. Most of the studies (16) were Australian.14,16,18,19,21,23,25–28,31–36 Four of the studies were from the UK.2,12,13,17
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| Box 2 Summary of results Studies identified A total of 26 studies were identified: 10 surveys, three qualitative studies and 13 reports. No case–control, cohort, randomized control trials or meta-analyses were found. The majority of studies (16) were based in Australia. Research questions Education and training (eight studies); strategic issues, e.g. access and the role of primary care professionals (six studies); role of carers (five studies); pain control (three studies); consultation skills (one study). Survey study details Sample numbers ranged from 15 to 2915. Only four studies sampled exclusively rural populations. Response rates varied from 34 to 88.2%. Qualitative study details Qualitative methods were appropriate, with clear aims and careful representation of rural areas in the three studies identified. Purposive sampling was used in two of the studies; detailed description of methods and analysis were available. The views of nurses were explored in two studies and carers in one study, but the views of GPs were not examined in any of these studies. The researchers’ perspective was not described in any of the three studies. Report details The reports identified were difficult to analyse in a systematic way because of their diversity and the lack of details about methods. Summary of findings The role of primary care was discussed in 12 studies, and problems were reported in the provision of symptom control for patients and the education, training and emotional support for professionals providing palliative care in rural settings. Accessing specialist services was also reportedly difficult for these professionals, and both they and rural families described difficulties in accessing information. Developments in information technology were mentioned in a few studies as possible solutions.
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In terms of research question, eight studies focused on assessing the perceived needs of health care professionals for education and training.15–19,25,28,31 Strategic policy issues such as patient access and the role of primary care health professionals in the delivery of rural palliative care were considered in six studies.12,18,20,21,27,35 Five studies evaluated the potential role of carers.14,22,23,26,32 Less attention was given to the presence or absence of adequate pain control (three studies12,13,24) or the quality of consultations skills in the palliative care context (one study30).
The sample numbers in the surveys ranged from 1514 to 2915.12,13 There were no data for sample size in one of the surveys.19 Most of the surveys, however, had sample sizes >100 (eight studies2,12,13,15–18,20). A minority of the surveys sampled exclusively rural populations (four studies14,18–20). One survey looked at ‘predominantly’ rural populations,2 whilst the others looked at mixed urban/rural populations.12,13,15–17 The response rates varied from 3416 to 88.2%,18 with only three surveys achieving response rates >80%.14,15,18
The three qualitative studies21,22,23 were assessed with reference to a methodological checklist,11 chosen for its clarity and ease of use. First, all the studies were found to examine an important problem, with clear aims set down. A qualitative method was appropriate in all cases, as all three studies explored questions of perceived needs and roles. In terms of setting, efforts were made in the three studies to represent rural areas and further to include different districts within a rural area. All strove to obtain a representative sample; two of the studies moreover used purposive sampling.21,22 The sample numbers in the three qualitative studies were, however, relatively small (n = 621, 1322, 2923). Furthermore, whilst the views of nurses were explored in two studies21,23 and the views of families and carers in two studies,22,23 GPs were unrepresented.
The researchers’ perspective was not described in the qualitative studies; there was no account of their backgrounds, viewpoints nor of their relationships with the subjects. Methods for collecting the data were described in detail in the three studies. All used semi-structured/ in-depth interviews, and one study21 combined this with participant observation techniques. The data analysis was described in detail, with formal content analysis used in the three studies. This analysis was conducted by more than one independent researcher in two of the studies,22,23 but by only one researcher in the other study.21 In terms of the results, the emerging themes from the three studies were presented with reference to verbatim quotations. Their conclusions also seemed valid as they were directly related to the studies’ findings.
It was difficult systematically to analyse or compare the methodology of the 13 reports. They were of a disparate nature, ranging from project reports32 to consultation documents,30 with two of the reports using a range of methods.24,35 On the whole, few methodological details were available. Nine of the reports were exclusively rural,25,26,28,29,32–36 whilst four were mixed urban/ rural.24,27,30,31
The role of primary care in rural palliative care was discussed in 12 of the studies.2,14,15,17,18,21,25,29–31,35,36 Carers reported satisfaction with the local primary care services,14 and GPs described palliative care as an important part of their work.2 Primary care workers reported problems obtaining relevant education and training.2,16–18 Studies also reported difficulties achieving symptom control12,35 and obtaining sufficient support for emotional issues such as bereavement counselling for both nurses and carers.18
Specialized palliative care in rural areas was considered in eight studies.2,12,14,15,22,27,30,35 Access to these specialized services was reported as a problem,14,22,35 and rural patients reportedly were less likely than their urban counterparts to receive care from the hospice service.27 Families and professionals described difficulties in accessing information,12,17 and communication difficulties also reportedly arose between primary care and specialists.15 Developments in information technology such as telemedicine were seen as possible solutions to some of these problems.25,30–32
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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The most effective organization of palliative care for rural populations is a poorly researched topic. Such work that does exist reveals an inequity of services, and identifies a significant opportunity to improve outcomes for patients with terminal illness in these areas. Only a small number of studies (26) were found in our review, mostly surveys and reports of variable sampling and response rate quality. Only three qualitative studies were found, all involving very small samples. The fact that the majority of the studies were Australian may reflect a greater investment in rural health research there than in other countries.
Strengths and weaknesses of the review
There are no previous systematic literature reviews in the field of rural palliative care. Consequently, the scope of the review is necessarily broad. This breadth is also a reflection of the weakness of the literature base. The review is repeatable, using a recommended range of electronic databases and a standardized set of keywords and inclusion/exclusion criteria. Further, we used accepted methods of evaluating quantitative and qualitative studies. As the work was not funded, we limited the search to studies published in the preceding 10 years (1991–2001). In addition, neither hand searching of journals nor the appraisal of work published in languages other than English was attempted, but the bibliography of all identified articles was checked for relevant earlier work. By contacting other authors and specifically comparing our work with a review of the effectiveness of palliative care teams,8 no further relevant work was found.
RE and DS assessed the studies using the framework described and subsequently discussed the findings. Most discussion centred on the definition of rurality. Rurality was defined in the review in terms of sparsity and remoteness. These definitions were not quantified, and self-reported rurality was assessed qualitatively by considering the areas studied in terms of sparsity and remoteness. Such subjective, arguably loose definitions reflect both the paucity and wide variety of descriptions in the literature of rurality.1
Given the aims of the review, we decided only to consider work from developed countries. We dis-cussed whether a study from South Africa24 should be included. Our decision was that the health services there were sufficiently developed for the study to be included. Mixed urban/rural studies were included in the review; ‘rural’ and urban data were extracted separately.
Meaning of the study: possible mechanisms and implications for clinicians or policymakers
The limited number of studies in this review precludes definitive conclusions on the most effective organization of palliative care in rural areas. Indeed, the principal message is of the weakness of the literature base. Furthermore, the Australian predominance in the review limits the extrapolation to other developed countries. Rural Australia arguably is considerably different from rural UK, for instance, in terms of sparsity and remoteness. Nonetheless, the important contribution of primary care to the delivery of palliative care is reiterated throughout the body of work. Moreover, there is a recurring theme of primary care professionals feeling either unsupported or overwhelmed.2,15–18,22,35,36 This also seems to be true, though with less supporting evidence, of families and carers in rural areas.14,23
Unanswered questions and future research
This review raises more questions than answers. Accept ing that primary care has a key role in the delivery of rural palliative care, there is little discussion on how best to organize, support and develop it. Specific questions are how best to provide education and training, specialist and symptom support and to develop networks involving information technology. Perhaps the answers will have to come from those primary care professionals who find themselves providing the service under conditions that are less than ideal. Or is it time to abandon the idea that generalists can provide what is rapidly being seen as specialist skills requiring new investment to provide a more intensive service in rural areas? It seems that continuing with the current arrangements is less than ideal, particularly for patients, and this review clearly demonstrated the need for further research into how best to organize rural palliative care.
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Acknowledgments |
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We thank Tricia Chapman, Library Services, Ceredigion and Mid Wales NHS Trust for acquiring the papers, Drs Jenny Deaville and Dr Alister Scott for their advice regarding rurality, and Dr Adrian Edwards and Danielle Goodwin for advice on literature sources and method. We also thank the CAPRICORN Primary Care Research Network for their support to write this article.
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References |
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