90 million Americans are currently living with and will eventually die from chronic illnesses. The economic burden of chronic illness is a staggering $1.3 trillion annually. Many with complex chronic illness struggle to navigate myriad transitions in care while experiencing debilitating symptoms such as profound fatigue, dyspnea, breathlessness and pain for years prior to death. This is especially true in rural areas where rates of poverty, disability, and premature deaths are among the highest in the nation. Integrated palliative care promises to improve the quality and continuity of care from diagnosis forward. Very little is known about the practical aspects of integrating palliative care concepts into strained health infrastructures or their acceptability among rural lay and professional stakeholders. The overall purpose of this study is to assess the palliative care needs and opportunities to integrate palliative care into formal and informal care processes for adults with complex chronic illness in a transitioning Appalachian community. Specifically, the study aims to: (1) describe the intersection of formal and informal chronic care transitions. Data generated from interviews, focus groups, and participant observation will be thematically analyzed to capture structures, processes and transitions in care over time. (2) Describe and analyze the influence of rural culture on the management of physical, psychosocial, spiritual and transitional aspects of care over time. Interview and participant observation data will be organized by respondent group, analyzed thematically and within and between group comparisons made. (3) Describe and analyze barriers and facilitators to integrated palliative care from the perspectives of patients, families, and health and social service professionals. Interview, focus group and survey data will be analyzed and comparisons made across respondent groups and settings. Undergraduate nursing and social work students will assist with community assessment activities to capture the broader community context. The NCP Guidelines for Quality Palliative Care is the sensitizing framework used for data collection and analysis. The PI, co-investigators and consultants have expertise in ethnography, community-based chronic care, community engagement and lay helper interventions in rural, distressed communities. It is expected that when successfully completed, this study will to lead to the identification of tailored lay/professional interventions to improve the quality and continuity of care across complex illness continuums.
The study will provide a more comprehensive understanding of the socio-cultural context of living with and caring for adults with complex chronic illness in rural areas. This information is critical to the efficacy of interventions that aim to reduce rural health disparities by preventing and reducing the human and economic burdens associated with complex chronic illness, a national public health priority.
| Buck, Joy (2011) Policy and the Re-Formation of Hospice: Lessons from the Past for the Future of Palliative Care. J Hosp Palliat Nurs 13:S35-S43 |
