Challenges and opportunities for patients with HIV who educate health professionals

Background: Patient perspectives are valuable for clinical care and teaching. Purpose: To understand personal and programmatic effects of using HIV-infected persons as teachers in courses about care of HIV-infected people. Methods: Semistructured interviews with HIV-infected faculty for New England AIDS Education and Training Center (NEAETC), addressing teaching decision and its personal, medical, and psychological consequences. Interview transcripts were analyzed via iterative, consensus building. Results: Participants reported consequences of teaching that benefited them as patients (finding health care providers, increasing their knowledge base, and receiving tangible rewards such as gifts). A deeper level of benefit was realized personally, increasing control over their life and disease. Relationships, personal and professional, changed, from unilateral to mutual, heightening a sense of their own empowerment. Teaching built support networks and aided in coping with difficult issues raised (negative emotions, informing significant others about their infection, death and dying). Program support was essential for participation, allowing numerous teachers to transform teaching from individual messages to universal lessons. Conclusions: The program was well received and well regarded by participating teachers. Convenience sampling does not account for nonparticipating faculty viewpoints or those who left the program, but concrete benefits can be expected if support and investment by the program is in place. Learning by these HIV-infected teachers fits the characteristics of transformational learning.