Navigating the complexities of advanced-illness care

Family caregivers in Alameda County benefit from the skills and knowledge of School of Nursing researchers.

When the end of a loved one’s life approaches, family, friends and caregivers face a barrage of emotions and checklists. Most people go through a period of chronic illness before they die. Along the way there are numerous choices to make ― from pain management and caregiver roles to legal paperwork and spiritual needs.

In hopes of improving the quality of life for those nearing its end, the Alameda County Care Alliance recently launched an innovative church-based care navigator program for congregants with advanced illness and their caregivers. Alliance leaders then reached out to experts from the Betty Irene Moore School of Nursing at UC Davis to design and implement an evaluation of the program in hopes of developing a care model that can be duplicated for other groups.

“Clergy at several churches here in Alameda County told us they spend a large portion of their time counseling and procuring resources for congregation members with advanced illnesses,” said Cynthia Carter Hill, minister of civic engagement at Allen Temple Baptist Church and executive director of the alliance located in Oakland, California. “We recognized an opportunity to develop care navigators within the church community.”

Navigating the complexities of care

A care navigator is someone who provides personal guidance to caregivers and those needing care as they manage a health condition or move through the health care system.

“What this program does is to put people at ease and understand they’re not by themselves,” explained Bishop J.W. Macklin of Glad Tidings Church of God in Christ. “We want to get them over their fear.”

The alliance, which partners with health and social service agencies, serves a diverse faith community of more than 35,000. Funded by grants from the Kaiser Permanente Community Benefit program and the California HealthCare Foundation, the alliance’s pilot project aims to build capacity, as well as train clergy and other congregation members as health navigators. Researchers at the School of Nursing will then train the projects’ care navigators as health coaches.

“Ensuring that a person with advanced illness has access to care and that the care aligns with his or her wishes is critical to improving health care experiences and quality of life,” explained Janice Bell, associate professor at the School of Nursing leading the evaluation design. “Research driven by the community and led by members within that community offers great promise for replication and sustainability of the intervention and holds promise for building trust between the community and health partners.”

With understanding first, solutions will follow

The partnership supports the School of Nursing’s focus on working with communities to understand their needs, then developing solutions to meet those needs. With the faith-based model, team members hope to extend and strengthen the care-delivery system, improve outcomes for people with advanced illness, reduce caregiver burdens and bolster infrastructures to meet the demand for advanced illness care.

“Our communities lack knowledge of available resources or established channels to receive care, so they turn inward for guidance,” added Marion DePuit, nurse and clinical lead for the alliance. “Developing care navigators from within our congregations stems from our tradition of helping each other. This is simply a more focused role.”

Alliance leaders asked congregants what they perceived to be the most important needs for advanced illness care, which guided the development of care navigator training. Church members, who inherently possess trust among others in the congregations, learned about advance directives, mental health resources, caregiver support and quality-of-life issues. Currently there are five navigators, one in each of the five churches in the pilot study.

Community-driven solutions

An additional $25,000 grant from the San Francisco Foundation enables School of Nursing researchers to develop and implement an extended community care navigator training program that builds on the churches’ faith-based health ministries and incorporates elements of a health coaching program implemented in the Central Valley.

“Projects like this, in which we work with community groups to develop solutions that meet their needs, exemplify what the School of Nursing’s research program strives for,” Bell added. “Ultimately, we aim to support interventions that can reduce health disparities and improve quality of life.”

Researchers hope this program component ultimately evolves into larger strategic planning and building a framework for program evaluation.

“We are part of the team invited to the table to think about how we grow this,” explained Jill Joseph, School of Nursing associate dean for research. “So that families can understand what they want, say what they want and get what they want, when dealing with the end of life.”