School of Nursing, University of North Carolina at Chapel Hill, NC 27599-7460, USA.
Qual Health Res. 2011 Apr;21(4):489-501. doi: 10.1177/1049732310387935. Epub 2010 Nov 1.
We explored how community responses to HIV contribute to distress in African Americans living with HIV in the rural South of the United States. We listened to the voices of community members through focus groups and African Americans with HIV through interviews. Community avoidance of HIV, negative views of HIV, and discriminatory behavior powerfully affected the distress of people living with HIV (PLWH). Ongoing distress, coupled with limited support, led to a life in which many PLWH endured their pain in silence and experienced profound loneliness. We conceptualized their experiences as socioemotional suffering--the hidden emotional burden and inner distress of not only living with HIV, a complex serious illness, but also with the societal attitudes and behaviors that are imposed on the illness and on PLWH. To improve the quality of life and health of PLWH, we cannot focus solely on the individual, but must also focus on the local community and society as a whole.
我们探讨了美国南部农村地区的艾滋病毒感染者的社区反应如何导致他们感到痛苦。我们通过焦点小组听取了社区成员的意见，通过访谈听取了艾滋病毒感染者的意见。社区对艾滋病毒的回避、对艾滋病毒的负面看法以及歧视性行为极大地影响了艾滋病毒感染者的痛苦。持续的痛苦，加上支持有限，导致许多艾滋病毒感染者在沉默中忍受痛苦，经历深刻的孤独。我们将他们的经历概念化为社会情感痛苦——不仅与艾滋病毒这种复杂的严重疾病共存，还与强加于疾病和艾滋病毒感染者身上的社会态度和行为所带来的隐性情绪负担和内心痛苦。为了提高艾滋病毒感染者的生活质量和健康水平，我们不能仅仅关注个人，还必须关注整个当地社区和社会。
