Organizing palliative care for rural populations: a systematic review of the evidence

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.     

Australian issues in the provision of after-hours primary medical care services in rural communities

OBJECTIVE: In 2003 the Rural Doctors Workforce Agency in South Australia (SA) facilitated the 'SA Rural Hospital After Hours Triage Education and Training Program'. It was designed to improve communication between rural general practitioners (GPs) and nurses undertaking after-hours triage, provide training in triage for rural nurses and develop local collaborative after-hours primary medical care models that can be applied in other settings. DESIGN: The program consisted of a series of three workshops. The first workshop provided an opportunity for GPs and nurses to discuss local issues relating to after-hours primary medical care service delivery. This was followed by a one-day workshop on triage for nurses. A follow-up refresher workshop was conducted approximately six months later. SETTING: Twenty-three rural communities in SA. PARTICIPANTS: Rural GPs and nurses working in rural communities. RESULTS: This paper reports on the issues highlighted by clinicians in providing after-hours primary medical care in rural and remote communities. These included community expectations, systems of care, scope of practice, private practice/public hospital interface, and medico legal issues. CONCLUSION: The issues facing after-hours health services in rural communities are not new. There are many opportunities for improvement of systems. A formal program including workshops and training has provided a useful forum to commence service improvements.     

The contribution of occupational therapy to the fabric of Australian rural and remote communities

Social justice has provided a basis for the underlying values of occupational therapy in Australia. In the 1990s, changes in health issues and delivery of services are causing occupational therapists to reconsider their values and the ways they deliver their services. By any measure, the health status of individuals in rural and remote communities of Australia is poorer that their urban counterparts. The issues associated with the poor health status of these communities will best be addressed through a combined strategic approach by governments, organizations and professional groups, including occupational therapy. Identification of some of the key issues affecting the supply of occupational therapists in rural and remote communities and how they might be addressed are discussed. It is proposed that the development of cohesive national strategies and actions aimed at enhancing the contribution of occupational therapy to rural and remote communities ought to include, among other things, adoption of the primary health care approach, fundamental changes in the education and preparation of practitioners for practice, and identification of competencies and standards for effective rural and remote practice.     

Rural Nonphysician Providers'' Perspectives on Palliative Care Services in Northwestern Ontario, Canada

Most palliative care in rural remote areas is provided by nonphysicians. This paper reports a survey of interdisciplinary rural health service providers (not including physicians) to identify the strengths and weaknesses in palliative care service delivery in a rural and remote region in northwestern Ontario, Canada. Questionnaires were sent to 156 nurses, homemakers, social workers, and pastoral care workers who care for terminally ill persons and their families, and 122 were completed and returned (response rate 78%). Consistent with practice in most rural areas, 90% of respondents were generalists. Respondents identified several problems with palliative care services, including inadequate training for caregivers, inadequate support services for family and professional caregivers, inadequate human resources, and lack of organized volunteer programs. Suggestions for improvements included better education for service providers; better availability of palliative care services; more counseling and support services for patients, family members, and professionals; and greater availability of respite beds. Overall, respondents rated clients' needs as being better met than their own. The most frequently reported problems for care providers were related to the lack of supports for care provision.     

International Perspective: ISSUES FOR NURSES IN RURAL AND REMOTE CANADA

ABSTRACT: Canada is a vast country with great diversity in its landscape, industry, culture and communities. The healthcare issues and concerns of people living in rural and remote areas are as fully diverse as the people and the landscape. This article describes the context of rural and remote nursing practice in Canada and discusses issues of health status and the social determinants of health, geographical isolation, professional isolation and cultural safety. It concludes with current initiatives in practice, education, research and policy. Particular issues facing nurses in rural and remote First Nations communities are highlighted.     

Learning issues for nurses in renal satellite centres

ABSTRACT: The introduction of 'satellite' dialysis centres has increased local access to renal services for patients living in rural and remote areas across Australia and is, therefore, consistent with rural health policies. Rural health strategies also aim to maintain and improve the skills of health professionals through regular review of the scope of their practice and evaluation of the education required. Yet, the results of the present national study of nurses working in satellite dialysis centres indicate that, for many, the context of practice influences their ability to access ongoing professional education to support and extend their nursing practice. The present study showed that there was a range of educational backgrounds among nurses working in rural 'satellite' centres with reportedly limited access to specific dialysis-related professional development. In the present paper we report on factors that influence the ability of nurses working in satellite dialysis centres to access ongoing professional education.     

Barriers to Quality Care for Dying Patients in Rural Communities

CONTEXT: Barriers to providing optimal palliative care in rural communities are not well understood. PURPOSE: To identify health care personnel's perceptions of the care provided to dying patients in rural Kansas and Colorado and to identify barriers to providing optimal care. METHODS: An anonymous self-administered survey was sent to health care personnel throughout 2 rural practice-based research networks. Targeted personnel included clinicians, nurses, medical assistants, chaplains, social workers, administrators, and ancillary staff, who worked at hospice organizations, hospitals, ambulatory clinics, public health agencies, home health agencies, and nursing homes. FINDINGS: Results from 363 completed surveys indicated that most health care personnel were satisfied with the palliative care being provided in their health care facilities (84%) and that most were comfortable helping dying patients transition from a curative to a palliative focus of care (87%). Yet, many reported that the palliative care provided could be improved and many reported that family members' avoidance of issues around dying (60%) was a barrier to providing optimal care in rural health care facilities. CONCLUSIONS: Findings suggest that health care personnel perceive they are effective at providing palliative care in their rural health care facilities, yet face barriers to providing optimal end-of-life care. Results of this study suggest that differences in training and experience may influence health care personnel's perceptions of the existing barriers. It may be important in rural areas to customize interventions to both the professional role and the site of care.     

Assessing the suitability of host communities for secondary palliative care hubs: A location analysis model

An increased need for palliative care has been acknowledged world-wide. However, recent Canadian end-of-life care frameworks have largely failed to consider the unique challenges of delivery in rural and remote regions. In the Canadian province of British Columbia (BC), urban areas are well-served for specialized palliative care; however, rural and remote regions are not. This study presents a location analysis model designed to determine appropriate locations to allocate palliative care services. Secondary palliative care hubs (PCH) are introduced as an option for delivering these services in rural and remote regions. Results suggest that several BC communities may be appropriate locations for secondary PCHs. This model could be applied to the allocation of palliative care resources in other jurisdictions with similar rural and remote regions.     

Primary care mental health workers: role expectations, conflict and ambiguity

A number of professionals are involved in mental health in primary care. The NHS Plan proposed the introduction of a new professional, the primary care mental health worker (PCMHW), to improve care in this setting. The present study was conducted to examine pilot PCMHW-type roles currently in existence, to explore staff expectations concerning the new PCMHW role and to consider the issues relating to roles in primary care mental health that are raised by this new worker. The study used a case study design, and involved qualitative interviews with 46 managers and clinicians from primary care and specialist mental health services, including pilot PCMHW-type roles. The key findings were as follows: The pilot PCMHW-type roles were almost exclusively related to client work, whereas respondents had far wider role expectations of the new PCMHWs, relating to perceived gaps in current service provision. This highlights the potential for role conflict. Secondly, there was disagreement and ambiguity among some respondents as to the nature of the new PCMHW's role in client work, and its relationship with the work undertaken by other mental health professionals such as counsellors, psychologists and nurses. Given that multiple professionals are involved in mental health care in primary care, issues relating to roles are likely to be crucial in the effective implementation of the new PCMHWs.     

RURAL PALLIATIVE CARE VOLUNTEER EDUCATION AND SUPPORT PROGRAM

ABSTRACT: The present paper looks at the challenges of palliative care delivery in rural and remote areas and proposes the establishment, education and coordination of a network of palliative care volunteers to assist in the delivery of non-clinical services. The development of a rural palliative care volunteer education and support training package is documented, together with details of the trialling of the package and its evaluation. Possible benefits of the program and some key issues to be considered when establishing a volunteer network are raised.     

THE STATUS OF RURAL NURSING IN AUSTRALIA: A REVIEW

ABSTRACT: While much has been written about the practice roles of remote area nurses in Australia, less is known about the role and function of the rural nurse. The majority of rural nurses practise in rural hospitals, community health settings and nursing homes. In contrast, the remote area nurses work setting is generally involved with Aboriginal and Torres Strait Islander primary health care services. Rural nurses' practice setting is usually located in a larger organisation than that of the remote area nurse. There is usually at least one medical practitioner in the town or on-call close by. Nurses who are employed in the smaller rural hospitals have what has been described as a 'specialist generalist' role. This means that they are required to be multi-skilled and competent in a wide range of nursing and non-nursing practice. In contrast, nurses who work in base/provincial hospitals, may have either a generalist or specialist role. This paper provides a summary of the literature on Australian rural nurses and develops some of the themes contained therein.     

International Perspective: RURAL NURSING IN THE UNITED STATES: WHERE DO WE STAND AS WE ENTER A NEW MILLENNIUM?

ABSTRACT: Approximately one-fourth of all Americans live in rural communities; and, of the 50 States, 31 have more than 60% of their counties designated as rural. No matter what indicator is used, United States residents in non-metropolitan areas have less than metropolitan counterparts (e.g. per capita income, health status, access to care, level of education and employment opportunities) and are more likely to need help from human services and health professionals. Additionally, rural people often must confront unique obstacles not experienced by most urban residents to access those services. As nurses live and work in rural communities they, too, must be aware of and contend with similar factors in their practice settings. In some ways rural nursing practice has changed dramatically over the last decade but in other ways things remain much the same. This article will examine common nursing issues associated with caring for clients in a rural environment. The information in this article is based on a review of the literature and the author's personal and professional nursing experiences.     

The family and nurse in partnership: providing day-to-day care for rural cancer patients

OBJECTIVE: To explore demands made on family members in managing symptoms and providing for the day-to-day care of relatives with cancer in rural New South Wales and how specialist palliative care nurses support these family members. DESIGN: Cross sectional qualitative study. SETTING: Seven health centres across rural New South Wales that cover a broad geographical area and reflect the diversity in economic conditions, population density and distance from three major urban centres in New South Wales. SUBJECTS: The study involved two groups of participants. The first group consisted of one or more members of families of oncology patients who were accessed through health workers at the seven centres. Nineteen family members from 17 families were interviewed. The second group comprised 10 nursing staff working as specialist palliative care nurses across the same geographical area as the families. MAIN OUTCOME MEASURES: Physical care and symptom management were the two main areas of interest. RESULTS: The rural experience of caring for palliative care patients was challenging, with support nurses needing to take into consideration all aspects of the patients' and families' living environments. CONCLUSION: There is a need for equipment and basic resources to be readily available to practitioners, funding for ongoing education and 24-h care.     

Connection,special objects and congruence: the perspectives of young children from disadvantaged communities on participation in early childhood education settings

This study contributes to child voice research that seeks to understand the early childhood education and care (ECEC) experiences of young children. Forty-seven children from seven disadvantaged communities in NSW Australia, including urban, rural and remote areas, participated in a face-to-face interview guided by Ecocultural theory. The children were asked to describe their experiences of the routines and activities of the ECEC service they attended. Analysis of the qualitative data revealed three main themes: connectedness (the importance to children of feeling connected to their peers and carers); special objects (the importance of things from home and ownership) and congruence (the extent to which the centre reflected or contradicted their home environment). Discussion of these findings includes implications for practice.     

Health professionals' views of the effectiveness of nutrition care in general practice setting

Aim: The current qualitative study aimed to explore the perceptions of key health professionals relating to the effectiveness of nutrition care provided in the general practice setting. Methods: Twenty‐eight health professionals across a range of disciplines (general practitioners (n = 11), practice nurses (n = 3), dieticians (n = 5), naturopaths (n = 5) and exercise physiologists (n = 4)) individually participated in a semistructured telephone interview, guided by an inquiry logic informed by the literature. Interviews were transcribed verbatim and analysed thematically using a constant comparison approach. Results: Health professionals, including general practitioners, perceived that nutrition care provided in the general practice setting was mostly ineffective at improving patient nutrition behaviour. This was reported to be due to nutrition care competency deficits among general practitioners, a general practice reimbursement system that encourages practices inconsistent with quality nutrition care, and a low prioritisation of nutrition care in general practice. Tensions were apparent between health professional groups, which may be hindering the successful implementation of interdisciplinary nutrition care for patients with chronic disease in this setting. Conclusion: Without systematic changes to Australian primary health care model, the demand on general practitioners as primary providers of nutrition care will continue, therefore mandating support for general practitioners providing care in this context. Further research is required to identify strategies to improve nutrition care and opportunities to facilitate integrated health care provided to the general public within the general practice setting.     

Issues in Rural Palliative Care: Views From the Countryside

Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.
Purpose: To better understand experiences and issues related to rural palliative care.
Methods: Focus groups were held for health professionals, family members and volunteers in 3 rural British Columbia communities. A coding schema was developed and the data were then thematically analyzed using a constant comparison technique.
Findings: Three themes in rural palliative care were established: nature of palliative health care services, nature of rural relationships, and competencies required for rural palliative care. Findings indicated that the diversity in rural communities requires tailored approaches to palliative care that consider the geographic, cultural and health aspects of residents in order to optimize care.
Conclusion: Tailored approaches to palliative care developed in conjunction with rural communities are needed in order to optimize care.     

PALLIATIVE HOME CARE IN A RURAL SETTING: REFLECTIONS ON SELECTIVE INTERACTIONS

ABSTRACT: Despite the fact that terminally ill patients are approaching the end-stage of their lives, the need for information and continuing involvement in their own care remains paramount and does not necessarily diminish as their dependency increases. This paper supports the view that nurses working in the area of rural palliative care are in an optimum position to establish the kind of relationship with patients and informal carers that augments a sense of involvement, self determination, equity and trust. This is of particular significance to rural palliative care where service provision may be under-resourced and where domiciliary nurses are often the key provider for continuing care and support.     

Educational needs of rural and remote Australian non-specialist medical practitioners for obstetric ultrasound

Objective: To determine the educational needs of rural and remote non-specialist Australian doctors for obstetric ultrasound.
Design: Survey design.
Setting: The study surveyed rural and remote doctors practising in a variety of settings including general practice, rural hospitals, Aboriginal communities and flying doctor organisations throughout Australia.
Subjects: Subjects included 314 solo and group practice rural general practitioners, rural hospital medical superintendents, senior medical officers, Aboriginal community controlled health service doctors, flying doctors, rural locums, registrars and two rural obstetricians. A total of 55% of the subjects were general practitioners in group practice. Respondents included 68 (22%) women and 246 (78%) men.
Results: The response rate was 32%. The highest priority areas of need for education included detecting foetal abnormalities and anomalies (19.1%), basic routine ultrasonography (17.17%), placental position (17.17%), dating (17.17%), foetal viability (12.88%) and morphology scan (12.26%). The main areas where doctors stated they lacked confidence included detecting foetal abnormalities (29.09%), basic routine ultrasonography (including machine use), such as, carrying out and interpreting obstetric ultrasound scans (27.27%), morphology scans (16.36%) and placental position (14.54%).
Conclusion: The study showed there was a large unmet need for education in obstetric ultrasound among rural and remote non-specialist doctors. Information from the needs assessment was used to develop the Australian College of Rural and Remote Medicine national obstetric ultrasound professional development program.