Stigma Affects Those Living with HIV and Caregivers

The rate of HIV/AIDS increases every year in China. Along with a diagnosis comes the physical and emotional toll. People who live with HIV/AIDS (PLWHA) must address a host of issues, including reduced physical ability, treatment adherence, emotional consequences, and the negative impact of stigma. China is a highly collective society in which individuals are very protective of the reputation of their families. They are taught to keep family matters private and rarely share their difficulties or problems with others in order to keep the image of their family intact. Because there is still a negative stigma attached to HIV/AIDS, Hongjje Liu of the Department of Epidemiology and Biostatistics at the University of Maryland wanted to see if this stigma was felt by caregivers of those living with HIV/AIDS as much as it was by the PLWHA themselves.

In the study, Liu used the actor-partner interdependence model (APIM) as a method of gauging the effects of stigma on 148 Chinese PLWHA and how these perceptions affected their caregivers. Additionally, Liu examined the reverse, specifically, how the caregiver’s perceptions affect the well-being and quality of life of the PLWHAs. The results revealed that the perceptions of the PLWHA and of the caregiver had a direct effect on their own quality of life. “In other words, the higher level of HIV stigma that is perceived by either PLWHAs or their caregivers contributes to lower quality of life for themselves.” Even though the overall perception of stigma was higher for the PLWHA than for the caregiver, the perception of stigma for one individual in the dyad directly predicted the actual level of quality of life by the other.

Liu believes this can be explained in several ways. First, individuals who themselves feel discriminated against or feel socially isolated may not seek out emotional support or medical attention. Second, regardless of whether they are caregivers or PLWHAs, individuals feeling the effects of stigma may internalize their psychological distress and put themselves at risk for depression and anxiety. These results clearly show that stigma is a global problem that affects people of different cultures in unique and varying ways. Liu added, “As HIV stigma and quality of life are complex phenomena rooted in cultures, intervention programs should be carefully planned based on social or cognitive theories and should be culturally adopted.”

Reference:
Liu, H., Xu, Y., Lin, X., Shi, J., Chen, S. (2013). Associations between perceived HIV stigma and quality of life at the dyadic level: The actor-partner interdependence model. PLoS ONE 8(2): e55680. doi:10.1371/journal.pone.0055680

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  • lucy

    lucy

    May 9th, 2013 at 11:51 PM

    not easy to get it off your mind but when you believe it is something to be ashamed for then youre doing no favor to yourself.what others say can be overcome but what you think of yourself has far more value and is tougher to overcome.

  • marcus

    marcus

    May 10th, 2013 at 4:08 AM

    This saddens me. There is a huge population of people who are having to not only live with this terrible disease, but they also have to face ridiculous stigma from society that is now being felt by their caregivers too. Sad.

  • Cheves

    Cheves

    May 10th, 2013 at 6:26 PM

    I suppose that because being this way toward someone who is ill has never occurred to me, it has also never occurred to me that obviously it does happen within the lives of many others.
    It is crazy to believe that in this day and time, when there is so much knowledge out there that there are still many cultures around the world where these patients have to live being filled with such hurt and shame. I would have really hoped that there would be more of a world wide acceptance and understanding by now.

  • DARREN

    DARREN

    May 10th, 2013 at 11:51 PM

    IM SURE STIGMA WOULD BE A LARGE FACTOR WHETHER YOU ARE THE PERSON OR A CAREGIVER,ESPECIALLY IN AN EASTERN SOCIETY.NOT BEING DISCRIMINATING HERE BUT THAT THEY GIVE MORE IMPORTANCE TO STIGMA IS A FACT THAT CANNOT BE CHANGED.

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