The Social Justice Speaker Series Presents:
Using a Community-Based Participatory Research Method to Explore Barriers and Facilitators to End-of-Life Care for a Black Urban Population in Connecticut
Presenter: Amisha Parekh de Campos, PhD, MPH, RN, CHPN
Date & Time: Â Thursday March 27th, 2025 from 7:00PM – 8:00PM Eastern Standard Time
Location: Via Zoom
Zoom Link: Emailed with ticket
Cost:
FREE to attend
FREE CE for CPA Members
$15.00 CE Processing Fee for Non-members
Continuing Education: Â Eligible for 1 CE
Abstract:
Health disparities among marginalized populations in end-of-life (EOL) care are related to social and structural challenges, including factors related to social determinants of health, spiritual values, and provider-level barriers. Many EOL programs are structured homogeneously and do not account for variances in cultural practice, socioeconomic status, or implicit bias, thus contributing to low EOL utilization among Blacks. Therefore, this study aims to identify barriers and facilitators to EOL care in an urban area through a community-based participatory research (CBPR) approach. CBPR approach allows for partnerships with community members, working collaboratively to identify needs and existing resources, and involve community members in data gathering, analysis, and dissemination. The study will be conducted in two phases; Phase 1 is developing a community advisory board (CAB) to develop recruitment materials and questions for qualitative interviews, and Phase 2 is interviewing Black individuals on their perceptions of EOL care. Phase 1 consists of an interprofessional team who will work with existing contacts in the community, faith-based organizations, and an associated DEI committee of the health system that serves the population to develop recruitment material and questions for semi-structured interviews. Phase 2 is recruiting approximately 11 Black individuals with serious illnesses to discuss access to EOL care. Themes that emerged included limitations with advance care planning, family caregiving, personal issues, health system barriers, and a lack of knowledge and understanding of palliative care. This study showed that barriers exist throughout many aspects of this population’s care, including access to palliative care. However, the larger problem, and more important issue, is a lack of exposure or introduction to palliative care for this population.
Learning Objectives:
By the end of the presentation, participants will be able to:
1. Identify three key components to community based participatory research (CBPR)
2. Recognize two racial disparities in palliative and end-of-life care in a vulnerable population
3. Verbalize three methods to reduce barriers to access and disparities in care coordination among marginalized populations.
Research Citations
Choi, S., McDonough, I.M., Kim, M., & Kim, G. (2020). The association between the number of chronic health conditions and advance care planning varies by race/ethnicity. Aging & Mental Health, 24(3). https://doi.org/10.1080/13607863.2018.1533521
de Vries, K., Banister, E., Dening, K.H., & Ochieng, B. (2019) Advance care planning for older people: The influence of ethnicity, religiosity, spirituality, and health literacy. Nursing Ethics, 26(7-8). https://doi.org/10.1177/0969733019833130
Estrada, L.V., Agarwal, M., Stone, P.W. (2021). Racial/ethnic disparities in nursing home end-of-life care: A systematic review. Journal of Post-Acute and Long-Term Care Medicine, 22(2021). https://doi.org/10.1016/j.jamda.2020.12.005
Presenter Biography
Amisha Parekh de Campos, PhD, MPH, RN, CHPN has a joint appointment as an Assistant Clinical Professor, University of Connecticut School of Nursing, and Quality and Education Coordinator of the Middlesex Health Hospice Program, Middletown, CT. Amisha received her PhD in Nursing from the University of Connecticut (2020), BS and MPH in Global Health from the George Washington University (2001 & 2005). She received her BSN from the University of St. Joseph in 2009; additional certifications include hospice and palliative care (CHPN). Amisha started her career in public health establishing public health clinics and training community health workers in rural areas of south India and the Dominican Republic. She led initiatives on the prevention of HIV, tuberculosis, and mosquito-borne illnesses with community, government, and private organizations.
For the past ten years, Amisha has worked in hospice home care in various leadership roles, including community liaison and clinical supervisor. Currently, she manages research, quality, education, and orientation for the Hospice Homecare program, which serves approximately 150,000 people in Connecticut. In addition, Amisha is an Assistant Clinical Professor at the University of Connecticut, School of Nursing working towards enhancing palliative care curriculum and education among undergraduate students. She is a Robert Wood Johnson, Future of Nursing Scholar (2017-2020) and Jonas Scholar for Chronic Health (2017-2020). In 2019, Amisha received the 2019 Hospice and Palliative Nurses Foundation Scholarship to fund a study in advance care planning through simulation with registered nurses. She is the 2021 recipient of the Hospice and Palliative Credentialling Center Certified Hospice and Palliative Nurse of the Year and recipient of the 2021 Young Investigator Award from the Connecticut Coalition to Improve End of Life Care. Amisha was also featured in the Journal of Hospice and Palliative Nursing.
Amisha’s program of research focuses on end-of-life care communication. Her dissertation focused on simulation among registered nurses in advance care planning communication. Working at a community health system, she has noticed the disparities in end-of-life care among Blacks. With her public health background and working with communities, she would like to assess the barriers and facilitators to end-of-life care and provide interventions to expand EOL services to this population.
Post-Webinar Evaluation Form:
Post-webinar evaluation form will be provided during the event and must be completed to receive a Continuing Education (CE) certificate.
Closed Captions:Â Live audio captions are accessible for this event. If you need additional disability-related accommodations, please contact us by email us at info@connpsych.org or by phone (860) 404-0333. Requests should be made at least two weeks in advance of workshop date.
Refund Policy: Participants may direct questions to CPA by email at info@connpsych.org or by phone at (860) 404-0333. Registrants may cancel and receive a full refund up to two-weeks in advance of workshop date. Â An administrative fee of $30 will be charged for cancellation of registration within two weeks of the workshop date (Social Justice events will not be charged an administrative fee). Please note, no refunds will be granted within 24 hours of workshop date.
Continuing Education Approval:
The Connecticut Psychological Association (CPA) is approved by the American Psychological Association (APA) to offer continuing education for psychologists. CPA maintains responsibility for the program and its content. CPA will issue certificates of completion. APA CE rules require that we only issue credits to those who attend the entire workshop. Those logging into the Zoom webinar more than 15 minutes late or logging off before the entire workshop is completed will not receive CE credits (i.e. partial CE credit will not be issued).
CPA GRIEVANCE POLICY:
The Connecticut Psychological Association (CPA) is fully committed to conducting all activities in strict conformance with the American Psychological Association’s Ethical Principles of Psychologists. The CPA will comply with all legal and ethical guidelines for non-discrimination in promotional activities, program content and in the treatment of CE participants.  While the CPA strives to assure fair treatment for all participants and to anticipate problems before they occur, occasionally grievances may be filed. In cases where a participant files a written or oral grievance, the following actions are taken:
If the grievance concerns the content of the workshop a CPA representative will mediate and will be the final arbitrator. If the participant requests action, the CPA will either provide a credit for a subsequent CE offering or provide a partial or full refund of the CE fee already paid. Â Actions involving a credit, or a refund will require a written note documenting the grievance for record- keeping purposes. The aggrieved individual need not sign the note. If the grievance specifically concerns the CPA, the CPA will attempt to arbitrate.
Direct correspondence to: The Connecticut Psychologial Association, P.O. Box #1167, Old Saybrook, CT 06475 or by email to executivedirector@connpsych.org.
