A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.
Despite significant progress in implementing palliative care interventions for patients with cancer, few intervention studies seek health care clinicians' input before implementation of these into the community. The purpose of this study was to explore palliative care and oncology clinicians' perspectives on the perceived facilitators and challenges in meeting the quality-of-life needs of patients with lung cancer and family caregivers in community-based settings. The Reach Effectiveness Adoption Implementation Maintenance model for implementation research was used as a framework. This was a multisite qualitative study using focus group and key informant interviews. Nineteen clinicians addressed useful practices and challenges in the following areas: (a) early palliative care, (b) interdisciplinary care planning, (c) symptom management, (d) addressing psychological and social needs, and (e) providing culturally respectful care, including spiritual care. In preparation for the intervention, specific education needs and organizational challenges were revealed. Challenges included timing and staffing constraints, the need for clinician education on palliative care services to increase organizational buy-in, and education in providing spiritual support for patients and family caregivers. This research allowed investigators to understand perceptions of clinicians as they prepared to integrate palliative care in their settings. Hospice and palliative care nurses can be instrumental in implementing palliative care into community practice.
Background: Disparities in hospice and palliative care (PC) for African Americans have been linked to mistrust toward the healthcare system, racial inequalities, and cultural preferences. Spirituality has been identified as important to African Americans in general. Less is known about the influence of spirituality on African American illness experiences. Objective: The goal of this study was to understand older African Americans’ perspectives on how spirituality influences chronic illness experiences to inform the development of a culturally tailored PC intervention. Methods: In partnership with 5 churches in the Denver metropolitan area, we conducted focus groups with African American older adults (n = 50) with chronic health conditions and their family caregivers. Transcripts were analyzed using a deductive approach. The theoretical framework for this study draws on psychology of religion research. Results: Themes referenced participants’ spiritual orienting systems, spiritual coping strategies, and spiritual coping styles. Psycho-spiritual struggles, social struggles, and sources of social support were also identified. Findings suggest African Americans’ spirituality influences chronic illness experiences. Participants relied on their spirituality and church community to help them cope with illness. In addition, social struggles impacted the illness experience. Social struggles included mistrust toward the healthcare system and not being connected to adequate resources. Participants expressed a need to advocate for themselves and family members to receive better healthcare. Churches were referred to as a trusted space for health resources, as well as spiritual and social support.
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