African American patient and caregiver attitudes and perceptions of community health workers as lay patient navigators in palliative care

Background: Concurrent palliative care for patients with advanced cancer has been shown to reduce physical and psychological symptoms, and improve the quality of life of patients with advanced cancer. Underutilization of palliative care services, especially among African American patients with advanced cancer, remains an important public health problem. To address this gap, we developed a community health worker (CHW) palliative care intervention for African American patients with advanced cancer, which is being formally assessed through an ongoing effectiveness-implementation trial (NCT05407844). As part of the preparatory phase of this study, we conducted qualitative interviews with African American patients with advanced cancer and their caregivers. The objective of this analysis was to explore patient and caregiver attitudes and perceptions of the CHW palliative care intervention to support African American patients with advanced cancer in accessing palliative care.

Methods: We used purposive sampling to identify African American patients with advanced cancer and their informal caregivers from clinic lists and through referring oncologists. We conducted six individual and group semi-structured interviews with patients and caregivers between November 2022 and April 2023 at three enrollment sites: Johns Hopkins Hospital, TidalHealth Peninsula Regional, and University of Alabama at Birmingham Hospital. The interview guide was informed by the Consolidated Framework for Implementation Research, with a focus on the Innovation and Inner Setting domains. We used the framework method for thematic analysis.

Results: Overall, there was a lack of awareness and understanding of palliative care, due primarily to limited experiences with palliative care services among study participants. Despite this lack of familiarity, participants recognized the potential benefits of palliative care for patients with advanced cancer. All study participants were enthusiastic about the concept of patient navigation and the CHW palliative care intervention, with CHWs as lay patient navigators in palliative care. When reflecting on their own experiences, patients and their caregivers identified several areas where CHWs may have supported their cancer care, such as care coordination. Study participants viewed the CHW palliative care intervention as fulfilling a need within the African American community. Participants also made intervention delivery recommendations related to CHW characteristics, training and integration, and communication.

Conclusions: This study provides evidence for the acceptability of a CHW palliative care intervention for African American patients with advanced cancer and their caregivers. The findings of this study have led to intervention refinement, which will enhance implementation, delivery, and sustainability of the intervention.