Advocating for end-of-life choice at home: a survey of rural Australian nurses.

INTRODUCTION: Rural healthcare resource limitations can affect the choices people make and their quality of life during its end stages. In rural regions of Australia, district nurses (DNs) working in generalist community roles provide access to care by visiting people in their homes. They may be well positioned to improve the quality of the end-of-life experience by advocating for choice and person-centred end-of-life goals; however, knowledge about care in this context is limited. Initial findings from an exploratory qualitative study describing how rural DNs are able to successfully advocate for the end-of-life choices and goals of people living at home need to be confirmed and further developed to inform clinical practice. This survey aimed to test and complement the findings from a narrative exploration of how DNs advocate successfully for the end-of-life goals of rural Australians. METHOD: A sequential mixed methods study based on a pragmatic design was used to explore how DNs advocate successfully for the end-of-life goals of rural Australians. In the first phase of the study two stages of reflection on experience by rural DNs from the state of Victoria (N=7) provided written and in-depth narrative understandings of how advocacy is enabled and actioned in the practice context. The data were analysed with interpretive description, resulting in findings that could be used to inform a survey for the second phase. The survey, reported here, was designed as an online questionnaire to be distributed by email across inner and outer regional Australia. It was trialled by rural health professionals (N=13) and modified according to the advice received. The participation criteria for the survey specified registered nurses working in generalist community nursing roles with experience in providing successful end-of-life advocacy for people at home. Scales were used to test and complement the phase 1 findings and analysed using Cronbach's alpha and descriptive statistics, with a 95% confidence interval calculated. Open-ended questions added to complement the understanding of how successful advocacy is enabled and actioned in this context were analysed with descriptive interpretation. RESULTS: A self-selecting sample of nurses (N=91) responded to the survey between March and July 2015. The response came from most Australian states and territories, and confirmed the findings that willing nursing involvement in end-of-life experiences, specialised rural relational knowledge, and feeling supported, together enable nurses to advocate successfully for person-centred goals. Actions based on advocacy that were highly rated for success include holistic assessment, effective end-of-life communication and the organisation of empowering and supportive care, confirming the phase 1 findings. High levels of emotional intelligence, understandings of 'going beyond duty', the types of support used and the need for advocacy for resources were reported. CONCLUSION: The results provide both confirmatory and new knowledge that can be used with confidence to inform practice with a model for rural end-of-life nursing advocacy in the home setting.

A practice model for rural district nursing success in end-of-life advocacy care.

AIM: The development of a practice model for rural district nursing successful end-of-life advocacy care. BACKGROUND: Resources to help people live well in the end stages of life in rural areas can be limited and difficult to access. District nurse advocacy may promote end-of-life choice for people living at home in rural Australia. The lack of evidence available internationally to inform practice in this context was addressed by exploratory study. METHOD: A pragmatic mixed method study approved by the University Faculty Ethics Committee and conducted from March 2014 to August 2015 was used to explore the successful end-of-life advocacy of 98 rural Australian district nurses. The findings and results were integrated then compared with theory in this article to develop concepts for a practice model. RESULTS: The model illustrates rural district nurse advocacy success based on respect for the rights and values of people. Advocacy action is motivated by the emotional responses of nurses to the end-of-life vulnerability people experience. The combination of willing investment in relationships, knowing the rural people and resources, and feeling supported, together enables district nurses to develop therapeutic emotional intelligence. This skill promotes moral agency in reflection and advocacy action to overcome emotional and ethical care challenges of access and choice using holistic assessment, communication, organisation of resources and empowering support for the self-determination of person-centred end-of-life goals. Recommendations are proposed from the theoretical concepts in the model. LIMITATIONS: Testing the model in practice is recommended to gain the perceptions of a broader range of rural people both giving and receiving end-of-life-care. CONCLUSION: A model developed by gathering and comparing district nursing experiences and understanding using mixed methods and existing theory offers evidence for practice of a philosophy of successful person-centred advocacy care in a field of nursing that lacks specific guidance.

Rural District Nursing Experiences of Successful Advocacy for Person-Centered End-of-Life Choice.

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.

District nurse advocacy for choice to live and die at home in rural Australia: a scoping study.

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: It is not known how district nurses overcome these circumstances to advocate for choice in end-of-life care. 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.