Do rural primary health care nurses feel equipped for palliative care
TL;DR: Even those who did not enjoy working with palliative care patients often went beyond the 'call of duty' to support a home death if that was what the patient wanted, and barriers to education included competing work roles, work load, geographical isolation and lack of backfill.
Abstract: Community primary health care nurses in rural and remote settings are required to provide palliative care as part of their generalist role. They have limited access to specialist medical and nursing support and sometimes there are no resident GPs. A study consisting of a mailed survey and follow-up interviews was conducted to explore the experiences of these nurses and to determine how personally and professionally equipped they felt for palliative care service provision. Most participants were registered nurses experienced in nursing and in rural and remote settings, who juggled multiple generalist work roles. They had only occasional palliative care patients, and more than half had provided palliative care for a friend or family member. Some nurses found palliative care rewarding, others preferred not to have to do it. However, even those who did not enjoy working with palliative care patients often went beyond the 'call of duty' to support a home death if that was what the patient wanted. Three-quarters had attended palliative care education in the last 2 years but 88% wanted more education. Barriers to education included competing work roles, work load, geographical isolation and lack of backfill. Support from managers and peers was considered important, as was accessing timely and relevant clinical support.
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TL;DR: The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education.
Abstract: People living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem. The educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location. All participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence. The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals.
39 citations
Cites background from "Do rural primary health care nurses..."
...This may reflect the broad experience base of the rural and remote nursing workforce, which takes on additional tasks and responsibilities in the absence of medical support [23]....
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...Similarly, rural nurses consider that palliative care is integral to their role, but find it difficult in the absence of adequate support and continuing education [22,23]....
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TL;DR: The thematic network description provides deep insight into the emotional skill and moral agency involved in successful end-of-life nurse advocacy and can be used as a sound basis for modeling and testing in future research.
Abstract: Choices in care during the end stages of life are limited by the lack of resources and access for rural people. Nursing advocacy based on the holistic understanding of people and their rural communities may increase the opportunity for choice and improve the quality of care for people living and dying at home. Pragmatism and nurse agency theory were used for a practical exploration of how district nurses successfully advocate for rural Australian end-of-life goals to begin the development of a practice model. In two stages of data collection, rural district nurse informants ( N = 7) were given the opportunity to reflect on successful advocacy and to write about their experiences before undertaking further in-depth exploration in interviews. They defined successful advocacy as "caring" that empowers people in the "big and small" personal goals important for quality of life. The concepts described that enable successful advocacy were organized into a network with three main themes of "willing" investment in holistic person-centered care, "knowing" people and resources, and feeling "supported." The thematic network description provides deep insight into the emotional skill and moral agency involved in successful end-of-life nurse advocacy and can be used as a sound basis for modeling and testing in future research.
30 citations
TL;DR: Literature is sparse reporting the lived experience of nurses providing palliative care in country areas for patients wanting to die at home, and an increase in demand for a home-based palliatives nursing service will require additional funding globally to meet this increase in the future.
Abstract: Aims The aim of the study is to explore the experiences of nurses providing home-based palliative care for patients who live in country settings. Methods This study is an integrated literature review. Electronic databases, specific journals of interest, and reference lists were searched using key words and Boolean operators. Descriptive thematic analysis was undertaken to identify main themes and subthemes. Critical appraisal of the articles was conducted using the qualitative Critical Appraisal Skills Program guidelines. Primary research articles published in English, in peer-reviewed journals from 1990 to 2017, were included. Results Twelve articles were included in this review. Two main themes emerged including the nature of nursing in country communities and nurses' emotional responses. The first main theme had the subthemes of community connections, geographical distance and isolation, organizational deficits, lack of education, and resources. The second main theme consisted on five subthemes including feeling rewarded, autonomy and professional isolation, hope and hopelessness, frustration, and fear. Conclusion Literature is sparse reporting the lived experience of nurses providing palliative care in country areas for patients wanting to die at home. An increase in demand for a home-based palliative nursing service will require additional funding globally to meet this increase in the future.
19 citations
TL;DR: Research designed to increase understanding of how rural district nurses advocate successfully for client goals will enable improvements to be made in the quality of end-of-life care offered.
Abstract: Background:Choice to live and die at home is supported by palliative care policy; however, health resources and access disparity impact on this choice in rural Australia. Rural end-of-life home care is provided by district nurses, but little is known about their role in advocacy for choice in care.Objectives:The study was conducted to review the scope of the empirical literature available to answer the research question: What circumstances influence district nurse advocacy for rural client choice to live and die at home?, and identify gaps in the knowledge.Method:Interpretive scoping methodology was used to search online databases, identify suitable studies and select, chart, analyse and describe the findings.Results:34 international studies revealed themes of ‘the nursing relationship’, ‘environment’, ‘communication’, ‘support’ and ‘the holistic client centred district nursing role.Discussion:Under-resourcing, medicalisation and emotional relational burden could affect advocacy in rural areas.Conclusion:...
15 citations
Cites background from "Do rural primary health care nurses..."
...In rural areas, time available for care is reduced by restricted formal service hours combined with long travel distances and chronic staff shortages that limit replacement for time off duty and education.(50,66) Nevertheless, the literature indicates benefit to DNs in the environment of the home setting....
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...The need to understand local cultural characteristics of the population and have education and support to provide culturally competent EoL care is considered important.(66) In contrast, rural UK DNs report witnessing lack of respect for clients, and the home becoming medicalised when hospital models of care are applied in the community,(56) and some rural Australian DNs complain of difficulty switching cultures of care between their divided hospital and community nursing roles....
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...Motivation to go beyond expected care to respect client wishes to live and die at home in rural Australia is high, regardless of some acknowledged negative attitudes and lack of educational preparedness.(66) The need to understand local cultural characteristics of the population and have education and support to provide culturally competent EoL care is considered important....
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...Community inclusion raises awareness of services and access and enables partnerships that benefit health outside the formal environment.(56,66) Barriers to positive relationships are evident in the selected studies and impact significantly on rural care....
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...Respect for choices, flexibility and a commitment to dignity allows DNs to meet the varied needs and expectations of clients, involved family members and their communities.(56,66) Ability to enter and view the ‘dying world’ from other perspectives gives access to private emotions,(64) where professional boundaries fade, and everyone deserves attention and care....
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TL;DR: Burns et al. as discussed by the authors compared a rural and metropolitan cohort in a South Australian bereaved population study, and found that the metropolitan cohort provided better care for people dying of cancer than the rural cohort.
Abstract: Author version under embargo for 12 months from publication. This is the peer reviewed version of the following article: [Burns, C.M., Dal Grande, E., Tieman, J.J., Abernethy, A.P. and Currow, D.C. (2015). Who provides care for people dying of cancer? A comparison of a rural and metropolitan cohort in a South Australian bereaved population study. Australian Journal of Rural Health, 23(1) pp. 24-31. ], which has been published in final form at [DOI:10.1111/ajr.12168]. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
14 citations
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TL;DR: Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology as mentioned in this paper, and it offers an accessible and theoretically flexible approach to analysing qualitative data.
Abstract: Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
103,789 citations
TL;DR: Rural and remote registered nurses have moderately high levels of participation in continuing education; however, participation and job satisfaction can be improved if some of the barriers identified are addressed.
Abstract: Background This article examines the barriers to participation in continuing education activities that are perceived by rural and remote registered nurses in Canada. Methods The data are drawn from a national survey that was part of a larger national project, "The Nature of Nursing Practice in Rural and Remote Canada." Results Perceived barriers to participation in continuing education activities include the isolation of rural nurses and time and financial constraints. Nurses who perceived barriers to participation were more likely to be middle-aged, unmarried, and working full-time than nurses who did not perceive barriers. They were also more likely to possess higher levels of nursing education and have children or dependents. The perception of barriers to participation was also associated with lower job and scheduling satisfaction. Conclusions Rural and remote registered nurses have moderately high levels of participation in continuing education; however, participation and job satisfaction can be improved if some of the barriers identified are addressed.
139 citations
TL;DR: Codaizzi et al. as mentioned in this paper explored district nurses' experiences of providing palliative care for patients with cancer and their families using a Husserlian phenomenological approach.
Abstract: Aim. This paper reports a study exploring district nurses’ experiences of providing palliative care for patients with cancer and their families.
Background. There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on district nurses’ experiences in palliative care.
Method. A Husserlian phenomenological approach was adopted with a purposive sample of 25 female district nurses. Data were collected using unstructured, tape-recorded interviews and analysed using Colaizzi's seven stages of data analysis.
Findings. Four themes were identified: the communication web; the family as an element of care; challenges for the district nurse in symptom management and the personal cost of caring.
Conclusions. District nurses’ experiences of providing palliative care to family units was challenging but rewarding. The emotive nature of the experience cannot be under-estimated, as many district nurses were touched by the varying situations. Whilst acknowledging the need to maintain an integrated approach to care, district nurses should be identified as the key workers in the complex situation of palliative care.
139 citations
TL;DR: There is little strong evidence to inform palliative policy and service development in rural settings, which means Coordinated programs of research are clearly required to develop a body of knowledge that is adequate to support effective service and policy development.
Abstract: Background: Access to integrated, palliative care regardless of location of residence is a palliative care standard yet we know such access is limited for those living in rural and remote settings. As a beginning step in the development of research aimed at informing policy and program development, a comprehensive review of the state of knowledge regarding palliative care in rural contexts is required. Purpose: To identify, evaluate and synthesize the published literature on rural palliative care. Design: Comprehensive review. Methods: Computer searches were conducted on PubBMed, ISI Web of Science, PsycInfo, CINAHL, and Ageline using the search terms palliative care, hospice, terminal care, end-of-life care, end-of-life, and rural or remote. Results: One hundred fifty-eight studies were retrieved. After screening using relevance and quality criteria, 79 studies were included in the review. Studies were grouped by subject matter into one of three categories: patient and caregiver perspectives; pr...
123 citations
TL;DR: A systematic literature review of studies that have examined the organization of rural palliative care and the views of professionals in rural areas to discover both their views and their needs in this field is conducted.
Abstract: 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.
116 citations