Community Engagement: The Ethnography of HIV/AIDS

This semester, we will be carrying out interviews with people living with HIV/AIDS in our community. In order to do so, you will be interviewing a person who is HIV positive over the course of the semester. In order to assist you in this process, we will be reading the text Wise Before Their Time, and following its basic topical interview structure. We will reworking through a number of community organizations that serve member of the community affected by HIV/AIDS:

• MANNA
• The Nest
• SJAA
• AtlanticCare PRIDE

Fieldwork may seem unfamiliar and uncomfortable, especially when meeting new people and "crossing (sub)cultural boundaries".  I will be guiding you every step of the way, but there are some helpful tips to getting started.

1. PREPARE*: Read about the people, organization and place you will be visiting and the people you will be interviewing beforehand! Prepare interview questions. Gather tools for note taking, photography and video recording. Be on time! You may want to voice record your interviews and note in a journal while you are recording.
2. ASK PERMISSION: Seek informed consent from potential participants. Give them a chance to say yes or no. Be honest and direct about who you are and what you are doing. We will be taking an online course on basic ethical considerations in interviewing.
3. PARTICIPATE AND OBSERVE: Participate in the group's activities to experience their lives from the inside. Beware of your ethnocentrism-judging others based on your own cultural assumptions.
4. SIT STILL: Don't race in and out. Stay as long as you can, without wearing out you're welcome. Be patient. See what is actually happening rather than what you expect to find. The preconceived notion is the worst enemy of the anthropologist.* the dark side of preparation!
5. LISTEN CAREFULLY: Ask good questions and then listen carefully to the answers. Base your follow-up questions on what you hear in the interview or observe as you interact. Notice who says what to whom and how it is said.
6. TAKE CAREFUL NOTES: Write extensive notes, both during and after you're fieldwork. Take note of seemingly unimportant matters, they may prove to be significant later!
7. NOTICE SILENCES: What is not being said? Who is not in the room? What won't you speak about? Silences and absences reveal important insights but are difficult to notice.
8. MAP INSIDE AND OUTSIDE:Sketch the inside and the outside of your fieldwork site. The best way to notice things and dynamics that might skirt your attention.
9. EMBRACE BEING AN INSIDER AND AN OUTSIDER: We will be studying people and places in our home community. This allows us to be in part both insider and outsider. Take advantage of these two different perspectives. Switch from one to the other when making observations and analysis.
10. LEAVE ROOM FOR THE UNEXPECTED: Be patient, flexible and open to the unexpected. Allow the ethnographic experience to develop on its own terms, not necessarily on your own schedule.
11. BE OPEN TO MUTAL TRANSFORMATION: Your worldview and those of the people you study may be transformed by your fieldwork interactions.
12. RETURN: Rapport and the quality of your research will increase with each return visit. Do not blow people off. Show them respect, show up.
13. PROTECT THOSE THAT YOU STUDY: Do no har! Consider the ways in which the things that you have learned could cause harm if you carelessly reveal them. Provide anonymity if necessary, and be prepared to change factual information if necessary (or leave things out) if it could act as an identifier, or cause damage. THIS IS ESSENTIAL, you are not a journalist, you are an anthropologist. Your principle job is to let OTHERS tell THEIR stories.
14. SAY THANK YOU: Show your gratitude for people who help you. Acknowledge their generosity for sharing their time and stories with you.Find ways to return this generosity...we will be reporting back our findings, but there may be other opportunities to give back.
15. ANALYZE: Reflect on your fieldwork experience. What patterns emerged (we will look at identifying themes/patterns) How is the experience of a person living with HIV/AIDS the same or different from what we have seen in our readings?
• Language: take note of often used terms or phrases, special terms, or terms that seem to be used in a different way than you are familiar with. These are often a doorway to themes
• Stories/Memories: coming out stories, diagnosis stories, first experience stories, family stories, etc. These are very important windows into a person's sense of their lives.

Kleinman developed "EXPLANATORY MODELS" to understand how people relate to their illnesses, that we will be borrowing to understand experiences with HIV this semester. You will be asking theses questions of your informants in the course of your interviews. Questions are grouped which are relevant to each other below. Explanatory models are:

..."notions that patients, families, and practitioners have about a specific illness episode.These informal descriptions of what an illness is about have enormous clinical significance: to ignore them may be fatal. They respond to such questions as, What is the nature of this problem? Why has it affected me? What course will it follow? How does it most affect my body? What treatments do I desire? What do I most fear about the illness and its treatments? Explanatory models are responses to urgent circumstances ...[that} contain contradictions and a shift in content. They are our representations of the cultural flow of life experience:consequently...they congeal and unravel as that flow and our understanding of it firms up in one situation only to dissolve in another. (Kleinman 1988, 120-122).

The questions you will ask are*:

• What do you call your problem?
• What name does it have?

• What do you think caused your problem?
• Why do you think it started when it did?

• What does your sickness do to you?
• How does it work? How severe is it?
• Will it have a short or long course?

• What do you fear most about your disorder?
• What are the chief problems that your sickness has caused for you?

• What kind of treatment do you think you should receive?
• What are the most important results you hope to receive from the treatment?

*Harvard physician and anthropologist Arthur Kleinman studied how cultural beliefs impact an individual's understanding of health and illness. Kleinman's work offers an approach to understand the patient's "illness narrative." The wording of questions should vary with characteristics of the patient, the problem and the setting. Patients may hesitate to disclose their beliefs, so patience and a genuine interest are important. The goal of the question is to elicit a patient's understanding of their health. (Reference: Kleinman, A. (1980). Patients and healers in the context of culture. Berkley, CA: University of California Press).