Comprehensive care in the context of terminal and life-limiting disease includes support for informal (family or friend) caregivers. An absence of community-based palliative and end- of-life (P/EOL) care resources means that informal caregivers are often left to cope with the complex needs of their loved ones at the end-of-life. The aim of this project is to assess both the capacity of rural communities to support informal care-givers, as well as the experiences and expressed needs of informal care-givers in rural places who are providing this essential care. Using a novel high and low tech approach in conducting this environmental scan and gap analysis, this project will provide information about P/EOL programs, services and policies especially as they impact informal caregivers in rural NL. The outcome will advance communities’ capacity to undertake the planning and delivery of P/EOL care – from policy, to programs and services, to volunteer initiatives.
Research question: What is the current state of P/EOL services in rural NL, and how does this impact (either positively or negatively) the capacity of informal caregivers to provide effective P/EOL care in rural communities?
• What is known about P/EOL programs and services in NL?
• What are the impressions of local/regional service providers about the reach of P/EOL programs in rural NL?
• What do end users – family friend providers and care receivers - of P/EOL support describe as the assets and challenges of dying in place?
• What can be done to better support informal providers of P/EOL care in rural places?
• Identify existing policies and programs (both provincially and regionally) that are aimed at rural P/EOL care
• Summarize formal providers’ views of strengths and gaps in the implementation of programs and policies, and/or the need to develop new policies
• Explore end users’ experiences of providing and receiving P/EOL care in rural places