Stakeholder Perspectives on the Use of Community Health Workers To Improve Palliative Care Use by African Americans with Cancer

Abstract

Background: African Americans in the United States have worse end-of-life care and cancer outcomes than whites. Palliative care may improve this disparity. Community Health Workers may provide a means to improve palliative care disparities. Methods: Semistructured in-depth interviews (five) and stakeholder focus groups (four) were conducted with cancer patients, caregivers, health care administrators, oncologists, and community health workers (CHWs). Patients were recruited through snowball sampling. Three raters coded interviews independently. Data were analyzed using interpretative phenomenological analysis. Results: Seventy-one individuals were contacted to participate with 24 stakeholders (34%) participating in individual interviews or across 4 stakeholder engagements. Eleven constructs were identified and grouped in three broader themes: ''hub of the wheel,'' understanding palliative care, and patient-provider relationships. Participants felt that the role of a CHW should be central, bridging patients with their providers, information, and resources, including psychosocial support and advance care planning documents. They also placed an emphasis on the background of CHWs, saying individuals selected should be familiar with the history, culture, and norms of the communities from which they operate. Stakeholders reported that a CHW could activate a patient to contact their primary care physician or oncologist who may refer to or provide palliative care. Stakeholders reported that given the barriers to palliative care, a CHW could contribute to patient-centered multidisciplinary care while addressing palliative care domains with patients and families in a culturally sensitive manner. Conclusion: Based on feedback from patients, caregivers, and providers, a culturally adapted CHW intervention may improve palliative care use for African American patients with advanced malignancies.

The Association Between Area Deprivation Index and Patient-Reported Outcomes in Patients with Advanced Cancer

“… 51 , 52 Additional strategies to assist patients with advanced cancer at the neighborhood level may involve patient navigation, traditionally utilized to assist with screening and appointment adherence, provided by community health workers familiar with the local resources for patients with advanced illness. 53 This community navigation role has recently been expanded to work with patients toward advanced directives 54 and could be considered in a broader, more supportive role for patients and families coping with advanced illness.…”

Sociodemographic Disparities in Access to Hospice and Palliative Care: An Integrative Review

“…Of the studies included in this review (N ¼ 20), 16 were quantitative studies, 8,19-33 3 qualitative studies, [34][35][36] and 1 mixed-methods study. 37 All quantitative studies involved non-experimental designs (cross-sectional, observational, and correlational designs).…”

“…The majority of studies ( 14) included patients exclusively. 8,[20][21][22][24][25][26][27][28][30][31][32][33]37 Remaining studies included patients and caregivers, 19 providers, 34,36 patients, caregivers, and providers, 35 and state-level data, that is, U.S. states or counties. 23,29 Race and ethnicity demographics were rather homogenous across studies, with majority of participants being White or Caucasian, consistent with existing literature.…”

“…Studies were characterized using the health care accessibility conceptual framework, 15 and identified challenges and barriers were conceptualized within each of the five domains (Table 3). Of the five domains influencing health care access, 60% (12) of studies emphasized Acceptability, [21][22][23][24][25][30][31][32][33][34][35]37 Affordability, 8,[19][20][21][22][23]25,27,29,31,32,34,37 and Appropriateness of services. 8,19,20,22,24,26,28,[30][31][32][33]35 Availability was highlighted in 50% ( 10) of studies.…”

“…Of the five domains influencing health care access, 60% (12) of studies emphasized Acceptability, [21][22][23][24][25][30][31][32][33][34][35]37 Affordability, 8,[19][20][21][22][23]25,27,29,31,32,34,37 and Appropriateness of services. 8,19,20,22,24,26,28,[30][31][32][33]35 Availability was highlighted in 50% ( 10) of studies. 20,21,23,24,[28][29][30]32,34,36 Approachability was described in only 15% (3) of studies, all of which were qualitative in nature.…”