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Community-Based Participatory Research on Issues Around Palliative and End-of-Life Care: Literature Review

Noh, Hyunjin PhD; de Sayu, Rebecca Paradiso PhD; Anderson, Kimberly Granda LCSW, PIP; Ford, Cassandra D. PhD, RN, FAHA

Journal of Hospice & Palliative Nursing: June 2016 - Volume 18 - Issue 3 - p 249–255
doi: 10.1097/NJH.0000000000000243
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This review describes past studies that adopted the approach of community-based participatory research to identify implications for future research to address palliative and end-of-life care needs in underserved communities. Four major databases were used to search for studies that met the inclusion criteria. A total of 18 articles published between 2000 and 2015 in scientific journals were identified and included in this review. Six themes emerged from the review of the 18 articles including end-of-life decision making/advanced care planning, experiences with serious illnesses, end-of-life views of individuals with disabilities, grief and loss, use of complementary medicine for palliative and end-of-life care, and community-based palliative care. Communities reported in the articles varied, including racial/ethnic minorities, people with disabilities, prison inmates, patients with late-stage AIDS, or volunteers serving seriously ill community members. Community members participated in many stages of the research process, generating research questions based on the community’s needs, providing input in developing intervention tools, implementing interventions, collecting data, and providing guidance for future direction. Building on these past efforts, future community-based participatory research studies on palliative and end-of-life care should include further intervention programs tailored to the needs of communities and more efforts to evaluate the effectiveness of the programs.

Hyunjin Noh, PhD, is assistant professor, The University of Alabama School of Social Work, Tuscaloosa.

Rebecca Paradiso de Sayu, PhD, is account manager, Forward Health Group, Inc, Madison, Wisconsin.

Kimberly Granda Anderson, LCSW, PIP, is doctoral student and research assistant, The University of Alabama School of Social Work, Tuscaloosa.

Cassandra D. Ford, PhD, RN, FAHA, is assistant professor, The University of Alabama Capstone College of Nursing, Tuscaloosa.

Address correspondence to Hyunjin Noh, PhD, The University of Alabama School of Social Work, PO Box 870314, Tuscaloosa, AL 35487 (hnoh1@sw.ua.edu).

The authors received no financial support for the research, authorship, and/or publication of this article.

The authors have no conflicts of interest to disclose.

© 2016 by The Hospice and Palliative Nurses Association.