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. Author manuscript; available in PMC: 2018 Aug 20.
Published in final edited form as: AIDS Care. 2016 May 10;28(10):1261–1268. doi: 10.1080/09540121.2016.1173641

Table 2.

Family relations among PLWH in southwest China

(1) Coping With From the Community
   Substantial level of local stigma:
 • (28-year-old rural woman) - “People in our area say that it [HIV/AIDS] is really terrible. They say it’s really terrible!”
 • (33-year-old rural woman) - “My mom said ‘your infection is somewhat difficult to accept.’”
 • (34-year-old suburban woman) - “Alas… I’m afraid that, afterwards, others will know that we have this disease [AIDS]…and despise us…we carry this kind of idea around with us…”
   Concealment of an HIV/AIDS diagnosis as a coping strategy:
 • (36-year-old urban man) - “I didn’t tellΔafter all, this is a terrible disease, and it causes discrimination.”
 • (40-year-old suburban woman) - “People who actually have this disease like us are afraid of telling others because people don’t usually accept it. If they find out you have this kind of disease, some don’t understand it and think that they could get infected by eating with you. I have this idea in my mind.”
 • (38-year-old rural woman) - “Once the doctor told me that I was HIV positive, my whole body became powerless. At that time, my child wasn’t around, and I cried every night. I had to go to work in the morning, and when I was at work I didn’t say anything. My colleague asked me why I didn’t talk at all. I said I was upset and didn’t dare talk to others. I was afraid that people wouldn’t understand or accept me, so I said I had something upsetting happen at home. Every evening for the whole week, I went to sleep alone and didn’t dare to tell others. I didn’t even tell my son.”
   Minimization of social interactions and shrunken networks:
 • (31-year-old suburban woman) - “I’d feel uncomfortable [to talk to others]. I’m reluctant to contact anyone, for the sake of escaping the feeling. I rarely even contact my friends.”
 • (14-year-old girl) - “Whenever my classmates want to visit me and play at my house, I say I don’t have time this week or give another excuse. Yes [I don’t want to let them play at my home]… [cry]…”

 (2) Coping with Stigma Alongside and Against Family
   Exclusion, lacking empathy, substantial discrimination:
 • (37-year-old rural woman) - “When I did not have the disease [AIDS], everyone [in the family] was good to me, but now that I have the disease, everyone is distant.”
 • (37-year-old man) - “Whenever my mom sees me, she asks me to ‘get out’ and ‘die,’ saying it’s meaningless that I live in this world and that I have no contribution to the family…while she speaks these kinds of words. I can also understand her, so I don’t fight with her or care about what she says either. I already became like this [an AIDS patient]… it’s fine to let her talk if it makes her feel comfortable.”
 • (12-year-old boy) - “No [other people know about my mom’s infection], probably just three of us [immediate family] know. My uncle’s family doesn’t care about us. We just need to live stronger.”
   Willingness to distance themselves from family members:
 • (33-year old rural woman) - “Usually, our family was very nice to me, and was concerned about me. Now, after I got this disease, I also don’t want to interact with them…I also don’t give things I’ve eaten to him [her son] ‘cause I’m afraid… There was a change in family relationships after my infection…I don’t want to have contact with them much. We washed all of the clothes and other stuff together before, but after knowing my diagnosis we separated them. We’re afraid just in case there is a bloodstain on it or something.”
   Replacing the parental care of infected family member’s children:
 • (28-year-old rural woman) - “My mother is good to my child. She’s afraid that my child would get infected, so she doesn’t want me to bring up the child.”
   Daily exclusions, despite greater acceptance:
 • (39-year-old rural man) - “It’s true that people don’t eat together, he [son] wakes me up to eat, but nobody eats with us [PLWH].”
   Too embarrassed to share suffering:
 • (40-year-old man) - “Usually we can’t talk about this kind of thing [AIDS]. Sometimes, I ask a bit about it, but basically she [daughter] won’t take the initiative and talk about it.”
   Minimized communications:
 • (28-year-old rural woman) - “My daughter asks me if I had a meal, and if my health condition is better. No more details than that.”
 • (40-year-old suburban man) - “We haven’t talked about anything specific, we don’t know how to talk, and we have nothing to talk about. I take my medicine on time, she [his mother] has nothing to ask, and she knows this disease is hard to cure. I take the medicine and it’s nothing more than a temporary control to put off the date of falling ill. She probably just knows about this, so she doesn’t ask anything.”
  Inconsistent attitudes within a single family:
 • (33-year-old rural woman) - “She [sister] helps me, and also, if the price of milk powder gets too high, she gives me some money. My parents won’t usually give me a penny…”

(3) Families that Support
   Knowledgeable, better-off and supportive families:
 • (33-year-old rural woman) - “My uncle and I are like brother and sister. My uncle is fifty some years old, but he understands me very much, and he shares some knowledge because he’s been all over the country. He said it’s nothing; he often gives me a call as well and asks me how much my CD4 has increased.”
 • (31-year-old suburban woman) - “… I take care of my little brother’s child. My brother also knows that I have this kind of problem…To speak of our family’s perception, their awareness is quite strong, and the kind of knowledge is quite broad, so they think it’s nothing, and I still take care of my nephew.”
   Staying married through HIV/AIDS:
 • (39-year-old rural man) - “… When I first learned of the fact [HIV infection], I simply couldn’t accept it. But, later I thought that I already had the disease, it’s useless to blame her [his wife]. We just need to live well, two people need to live well together, and divorce is useless. If I marry another person, I’ll harm the person, and she’ll blame me. This is how it is.”
   Family care as the most helpful resource for wellness:
 • (31-year-old suburban woman) - “Consolation at home is quite valuable, and my family helps me.”
 • (35-year-old woman) - “My family members help me. Speaking of which, I’m nevertheless lucky, my big brother and the family are very nice to me… If my family was like that of that woman [referring to an AIDS patient violently discriminated against by her family], I probably would’ve been dead as well. I know I wouldn’t still be alive today.”
   Children provide the utmost emotional and practical support:
 • (39-year-old rural man) - “…Originally, I had no hope. Now I look at the situation for my son’s sake and my heart becomes relaxed.”
 • (11-year-old suburban girl) - “I became more concerned about my dad [after his infection]. I know he has to take medicine on time every day, and when I help him I feel more comfortable.”
 • (38-year-old rural woman) - “… My kid is concerned about me a lot. Sometimes I don’t take medicine in the evening, then she says, ‘Mom, it’s time, why don’t you take the medicine?’ Sometimes she asks, ‘Mom, have you taken the medicine?’ … I shop and cook dishes, and she cooks rice, does laundry, sweeps the floor, etc.”
   Concerns about children: lacking the ability to support:
 • (36-year-old rural man) - “Yes, I’m worried [about my child]. I don’t worry about anything else. It’s nothing even if I die, but I just worry about my child.”
 • (31–year-old suburban woman) - “I don’t have a way out, my salary is too little, and I can’t bring her [daughter] around…We [the couple] rent a room and it’s somewhat difficult to raise a child. We can’t support her.”