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Home care nurses’ contribution to the integration of palliative care services Legault, Mary Theresa Frances

Abstract

The purpose of this study was to explore and interpret the contribution of nurses in the development and provision of integrated palliative care services for diverse populations. This issue has emerged as a relevant policy challenge. Many researchers and policy makers have recognized barriers to access and gaps in the utilization of services. The specific elements of quality palliative care in the home are not well understood. Ethical issues are challenging for nurses and families. Another major gap was to determine appropriate services to meet the care requirements for marginalized populations. Ethnographic approaches are ideally suited to the study of health services, such as palliative home care, to develop a narrative description and analysis of the experiences of a particular group of people, as well as events, and trends. In total, there were 52 participants including home care clients, their family members, home care and shift care nurses, clinical nurse specialists, nursing administrators, and a hospice physician. Data collection methods included participant observation, fieldnotes, interviews, and documentary review during fieldwork that occurred over a two-year period. Findings of this study are organized into three major themes that emerged from the data. The first was that home care nurses made valuable contributions to quality of life and quality of palliative care through coordination and integration of services amidst the complexities and challenges of the health care system. The second theme illustrated dramatic differences in quality of life and quality of care for mainstream and marginalized populations as reflected in the client and family experiences, nursing practice, and program models of care. Critical tensions within the health care system comprised the third theme, which showed that current programs are unable to keep pace with the rising expectations and demands for services. By examining these findings in the context of the existing empirical and theoretical literature, several issues became evident. The nature of palliative care is dynamic and changing. Within the mainstream context, programs must be responsive to specific needs of extended segments of the population including people with long-term and chronic illness, the elderly, and cultural minorities. For marginalized people, the challenge will be to provide specialized services based on the principles of harm reduction for primary care, crisis care, hospice care, and long term care. The complexity of home care nursing practice is reflected in the multiple dimensions of personal qualities and competencies required for providing quality palliative care and coordinating and integrating services. A vision of integration for community-based palliative care services entails the development of regional networks that address the needs of diverse populations and ensure accountability for resources and quality of care, within the framework of national initiatives for the reform of health care and social policies. Building family and community capacity and strengthening the ability of home care nurses to contribute their knowledge and expertise will ensure future development and integration of quality palliative care services. These challenges are consistent with the need to continually renew and adapt all aspects of the health care system to address the changing nature of society and its evolving health concerns through public participation and active involvement of nurses.

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