HIV Infections Clinical Trial
Official title:
A Qualitative Study for the Development of an Intervention Among HIV-Positive Former Plasma Donors (FPDs) in Fuyang, Anhui Province, China
The purpose of this study was to examine the needs, concerns, stigmas, and social networks of HIV infected former plasma donors (FPDs) and their relatives in Fuyang, Anhui Province, China. Interviews and focus groups were used to collect data in preparation for a future, larger behavioral study for HIV infected individuals in China.
The HIV epidemic in China has reached a phase of exponential growth. Among the infected are
former commercial plasma donors (FPDs) in rural communities, who became infected through
contaminated blood collection equipment. This study examined the needs, concerns, stigmas,
social networks, and discrimination among HIV infected FPDs and their families. The study
was designed to provide preliminary information and help prepare for the implementation of a
second study, which evaluated community based intervention on quality of life of HIV
infection villagers and HIV-related stigma.
Four groups of people were enrolled in this study: HIV infected FPDs; family members of HIV
infected FPDs; local healthcare workers; and other villagers not related to an HIV infected
individual. Participants were recruited based on sampling framework which stratified
potential participants by gender, age, and place of residence. Selected study participants
from all four groups had in-depth, one-on-one interviews approximately 2 to 3 hours in
length. The interviews were taped and transcribed, and the transcriptions were coded with
respect to responses. In addition, there were 2 separate focus groups; one for local
healthcare workers and a second for other villagers not related to an HIV infected
individual.
Information was collected from 111 participants through face-to-face, in-depth interviews
(FFI) and focus group discussions (FGD). FFIs were held with 20 HIV+ FPDs, 20 family
members, 20 villagers from HIV-negative households and 20 local health workers. A further 31
participants participated in four FGDs; two each with villagers from HIV-negative households
and local health workers, respectively.
Main findings
1. HIV testing and disclosure: Most of the interviewed HIV+ FPDs were tested when the
local CDC went to their villages and offered testing. Most of their spouses were also
tested. Villagers usually knew who is HIV+ in their village because there have been
confidentiality issues in the notification process and because they see who is seeking
AIDS-related healthcare or getting assistance from the government's HIV/AIDS care and
support programs.
2. Discrimination and stigma: There have been no acts of physical violence as a result of
discrimination or stigma. Acts of discrimination included being deliberately ignored,
both by other villagers and their families. Stigma associated with HIV/AIDS includes
imminent death, loss of labor and family economy, and bad reputation. The severity of
stigma/discrimination is inversely related to the prevalence of HIV in a village.
3. Psychological status: The ART program has improved people's outlook on life, however
many remain pessimistic about their health, economic situation and future.
4. HIV knowledge: Almost all the interviewees had heard of HIV/AIDS and knew the three
main transmission routes (i.e. blood, sex, mother-to-child), however there were some
misconceptions about transmission and prevention.
5. Sexual behavior: Most of the HIV+ FPDs reduced their frequency of sex, and some even
stopped having sex, after they learned their sero-status. Extra-marital sex was rare.
HIV+ FPDs rarely used condoms before they knew they were positive. While they reported
that they now use condoms every time they have sex, some of them do not use condoms
correctly.
6. Healthcare seeking behavior: After the introduction of the Four Free and One Care
program, HIV+ FPDs tended to seek health services in HIV-designated hospitals/clinics
because they provide financial support for medications. Despite the subsidies, many
still found healthcare unaffordable. A minority forgot to take or could not adhere to
their regimen at first, however this situation was very much improved by regular home
visits by local health workers.
7. Social network and support: Social networks among HIV+ FPDs have been formed as a
result of daily life, work and medical treatment. However the networks vary. In Funan,
a stable network has been formed among HIV+ people who know each other quite well
because they live close to each other and were together when selling blood, seeking
medical care after being informed of their HIV+ status and participating in
AIDS-related programs. In Yingzhou, PLWHAs have less contact with each other, partly
because they do not have a fixed treatment place. They do, however, have some
opportunities to meet and chat with each other.
8. Perceived needs: Participants were keen to learn more about HIV in general and in
particular about treatment. They also desire more opportunity for communication to help
them deal with the stress and pressure they experience. Family member recognized the
need for some kind of intervention to help their HIV+ relatives.
9. Economic situation: HIV+ individuals are the main income earners for their household,
however most are not fit enough for jobs in the cities and rely on crops as their main
source of income. People in Yingzhou are generally better off than people in Funan. A
large proportion of the family income is spent on healthcare for the HIV+ family
member.
10. Modality of intervention: Participants' opinions on AIDS-related programs varied
widely. HIV+ participants indicated their willingness to participate in any kind of
AIDS-related programs. Group activities seemed to be acceptable. It was suggested that
groups be divided by gender; that activities be held in a nearby or convenient
location; that the intervention be scheduled during the off-season for farming; and
that village leaders or doctors act as the contact persons for AIDS-related programs.
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