Silent Endurance and Profound Loneliness: Socioemotional Suffering in African Americans Living With HIV in the Rural South

Abstract

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.

Influences of Social Determinants of Health on African Americans Living With HIV in the Rural Southeast: A Qualitative Meta-synthesis

“…Descriptions of the influences of poverty included inadequate housing, homelessness, and inability to buy basic necessities such as food, medicine, and transportation. Seven of the nine articles reported that at least half of the study participants were surviving on an annual income less than $10,000 (Gaskins et al, 2011;Kempf et al, 2010;KonkleParker et al, 2008;Mallory, 2008;Miles et al, 2011;Phillips et al, 2011;Vyavaharkar et al, 2008). Lack of education was mentioned in three of the articles Phillips et al, 2011;Vyavaharkar et al, 2008).…”

“…Unemployment and lack of skilled jobs in rural areas were mentioned in five articles Miles et al, 2011;Moneyham et al, 2010;Phillips et al, 2011;Vyavaharkar et al, 2008). Participants talked about unemployment as, ''I don't have no income or anything'' and ''No jobs'' (Phillips et al, 2011).…”

“…Stress and worry were communicated regarding obtaining health care access (Vyavaharkar et al, 2008), extra planning for medication regimen (Konkle-Parker et al, 2008), and competing life demands (Konkle-Parker et al, 2008;Williams et al, 2011). Loss of relationships, fear of abandonment, and deaths of family and friends from HIV were a source of stress (Konkle-Parker et al, 2008;Phillips et al, 2011;Williams et al, 2011), as were lack of choice and personal power within relationships (Mallory, 2008;Miles et al, 2011). Stressors also included lack of control over life circumstances (Miles et al, 2011;Moneyham et al, 2010;Phillips et al, 2011), suicidal thoughts (Miles et al, 2011;Phillips et al, 2011), and hopelessness (Miles et al, 2011;Williams et al, 2011).…”

“…Participants talked about unemployment as, ''I don't have no income or anything'' and ''No jobs'' (Phillips et al, 2011). Others described discrimination by employers and reliance upon disability benefits for income (Miles et al, 2011).…”

“…Tables 2 and 3 were constructed to organize data into manageable categories of key determinants and nine subcategories: Poverty, Stress, Social Exclusion, Work, Transportation, Unemployment, Social Support, Substance Use, and Health Care. Table 2 includes details regarding influences of social determinants of health extracted from five articles (Gaskins et al, 2011;Kempf et al, 2010;Konkle-Parker et al, 2008;Mallory, 2008;Miles et al, 2011), and Table 3 includes information obtained from four articles Phillips et al, 2011;Vyavaharkar et al, 2008;Williams et al, 2011).…”