Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model.
| Autor: | Mayo-Gamble, Tilicia L., Murry, Velma McBride, Cunningham-Erves, Jennifer, Cronin, Robert Michael, Lari, Nabilah, Gorden, Alexis, Scott, Lametra, DeBaun, Michael R., Thompson, Trevor |
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| Předmět: |
CHRONIC diseases
FIELDWORK (Educational method) HEALTH services accessibility HEALTH status indicators INTERPROFESSIONAL relations MEETINGS METROPOLITAN areas MINORITIES HEALTH outcome assessment RURAL conditions HEALTH self-care SICKLE cell anemia HUMAN services programs HUMAN research subjects PATIENT-centered care |
| Zdroj: | Journal of Health Care for the Poor & Underserved; Feb2020, Vol. 31 Issue 1, p353-369, 17p |
| Abstrakt: | Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and [End Page 353] the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research. [ABSTRACT FROM AUTHOR] |
| Databáze: | Complementary Index |
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