Circles of Care

Abstract

Background Community-based peer support may help meet practical, emotional and spiritual needs of African Americans with advanced cancer. Support teams are a unique model of peer support for persons facing serious illness, but research is rare. This study sought to 1) implement new volunteer support teams for African Americans with advanced cancer in two distinct regions, and 2) evaluate support teams’ ability to improve support, awareness of services, and quality of life for these patients. Methods The study used a pre-post design. Community and academic partners collaborated to implement volunteer support teams, and evaluate the intervention using pre-post surveys of volunteers and patients. Patients who declined support teams were also interviewed as a comparison group. Results Investigators enrolled and trained 130 volunteers who formed 25 support teams in two geographic regions. Volunteers supported 25 African American patients with advanced cancer (72%) or other diseases. After 2 months, patients with support teams reported fewer needs for practical, emotional and spiritual support on a structured checklist. They more often communicated with someone about their cancer care needs (48% vs. 75%, p=0.04), and were more aware of Hospice (4% vs 25%, p=0.04), but quality of life scores were unchanged. Comparison patients who refused a support team had fewer support needs at baseline and follow-up, suggesting refusals were based on lack of need. Conclusion Coordinated volunteer support teams are a promising new model to provide peer support for African Americans facing cancer and other serious illnesses. Further testing in a pragmatic clinical trial is warranted.

A Review and Considerations on Palliative Care Improvements for African Americans With Cancer

“…53 A church-based volunteer peer support program has been found to provide support to African Americans with advanced cancer. 54 Even though QOL scores remained unchanged over the 2 months of the intervention, patients reported a decrease in their practical, emotional, and spiritual needs and a greater awareness of hospice services. 54 The National Hospice and Palliative Care Organization has developed an African American Outreach Guide with a strong focus in reaching out to spiritual and religious communities to increase the effectiveness of palliative care services for African American clients.…”

“…54 Even though QOL scores remained unchanged over the 2 months of the intervention, patients reported a decrease in their practical, emotional, and spiritual needs and a greater awareness of hospice services. 54 The National Hospice and Palliative Care Organization has developed an African American Outreach Guide with a strong focus in reaching out to spiritual and religious communities to increase the effectiveness of palliative care services for African American clients. 6 Having a good understanding of a patient's spiritual belief system and practices is an essential component to providing high-quality palliative care, given the potential for drastically different beliefs related to illness, suffering, and death, which will inform how a patient approaches this transition.…”

“…43 Unfortunately, even when African American patients have DNR orders they are no less likely than those without DNR orders to receive life-prolonging care. 54 These disparities are particularly noteworthy because life-prolonging care has been associated with increased distress and decreased QOL. 58 An African American at the end of their life may have experienced disparate health care throughout their lives.…”

They Lift My Spirit Up

“…The support team model is an innovative form of community-based support adapted to the needs of seriously and chronically ill individuals. The basic model of a support team focuses on helping one person to meet a variety of needs and includes elements of peer support, focusing on the abilities of each team member (Hanson, Armstrong, et al, 2013; Hanson, Green, et al, 2013). Support team volunteers work together to provide practical, emotional, and spiritual support to a person who is open to receiving assistance (Buys, Marler, Robinson, Hamlin, & Locher, 2010; Hanson, Armstrong, et al, 2013; Hartman, Brooks, & Morrill, 2009).…”

“…Volunteers offer to assist in a capacity they are comfortable with, in a coordinated way. Our research team has demonstrated the feasibility and acceptability of volunteer support teams for African Americans with cancer, called “Circles of Care” (Hanson, Armstrong, et al, 2013; Hanson, Green, et al, 2013). The support team model, developed in 1994 at the University of Alabama to improve care for patients with HIV, has only been described in two other peer-reviewed studies prior to its use in the current research: a support intervention for caregivers of persons with Alzheimer’s disease (AD; Stevens, Lancer, Smith, Allen, & McGhee, 2009) and a church-based home-delivered meals program (Buys et al, 2010).…”