Palliative/End of Life Care in Rural Settings: Support to Informal Providers of Care

Lay Summary 

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?
Objectives:
• 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

Departments 
School of Social Work
Communities 
St. John's
Locations 
Newfoundland and Labrador
Themes 
Health Services
Support Services
Industry Sectors 
Other Residential Care Facilities
Private Households
Start date 
1 Apr 2016
End date 
1 Apr 2018