In addition to the training, the plan was to start some assessment for home based care by talking to some of the church leaders and participants, and conducting a short survey. So I prepared myself by thinking of the key stakeholders, the information I would need from the different stakeholders, and some questions I could ask to gather this information. I also had prepared a short survey to find out the willingness of church members to care for people with HIV/AIDS and what they thought the needs are in caring for people.
After Day 1, Heidy thought I could talk to the participants before the morning session on Day 2. Well the morning session happened to be ALL the participants at once…so there were about 48 people in the room! It was really more of a community meeting…definitely not an interview or even a focus group. And it was all men except for 1 woman… And translation went from English to bahasa Indonesia to bahasa Lani and back…though it didn’t often travel straight back and forth – sometimes it would get partway, sometimes responses never made it past bahasa Lani. So it was very intimidating and frustrating at times and I think I missed a lot!
However, what did come back was obat and dokters, medicine and doctors…which we had already heard from the church leaders the evening before and from the Umoja training. Even when Heidy clarified that we do not have these things, the response to any questions came back around to obat and doctors. Yes, those are certainly valid and important needs but there is so much you can do for people who are sick even without doctors and medications! I was able to get some information from it anyways, but it was not encouraging, I felt like there were a lot of hurdles to overcome before getting to a point where the church would be ready to start implementing any sort of home based care.
There was hope though! One particularly insightful comment was (not exact quote r/t translation [translators summary words!] !) “[Stigma] means we don’t want to visit or touch people with AIDS and this makes people die faster, [depression]. We want information on how to make people live longer and so we can safely hang out with them.” This gave me hope that maybe we can reach beyond the fears and stigma so that people can “hang out” together!
The last day brought more hope. Through conversation with the church leaders and their wives, they validated the fact that stigma is a big problem, but they are also interested in extending beyond prevention into care. They responded to several questions about the willingness to participate and support this with “bisa” (can). Their further comments beyond the “bisa” revealed that stigma and discrimination will still be a barrier to overcome, but at least there is support!
The conversation with the women again revealed some of the stigma that is present; “Naughty children” will go to places like Wamena for school or work and return to their villages sick with suspected HIV. This makes their parents “sad”. Another woman mentioned a petition to kick out any prostitutes (I didn’t quite get from where – the village, district…). But when I followed this comment with the question, “so would you be willing to care for someone who was a prostitute and now had AIDS?” The answer came translated back to me as “Because I am a pastor’s wife I am willing, based on love.”
So…potential! They did feel that other women may not be as willing since they do not have that responsibility as a pastors wife, but maybe if we start with the pastors and their wives, and begin breaking down the stigma, more people will follow.
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