Application of Community-Based Participatory Research Methods to a Study of Complementary Medicine Interventions at End of Life

Abstract

Community-based participatory research (CBPR) principles can be successfully applied to the design and implementation of a complementary medicine study for adults with end-stage AIDS. The Yale Prevention Research Center partnered with Leeway, Inc., an AIDS-dedicated nursing facility, and other academic and clinical entities to conduct a randomized, controlled pilot trial of meditation and massage on quality of life at the end of life. Using CBPR principles, a methodology was developed that was scientifically rigorous, highly respectful, and acceptable to the 91% minority study population. Using continuous, open communication among all involved parties, challenges were satisfactorily addressed in a timely manner. Fifty-eight residents (97% of those eligible) with end-stage AIDS participated from November 2001 to September 2003. Subjects received 1-month interventions of meditation, massage, combined meditation and massage, or standard care. The study of quality-of-life in end-stage AIDS poses unique challenges well met by applying CBPR principles to an academic-community research partnership.