Silent endurance and profound loneliness: Socioemotional suffering in African Americans living with HIV in the rural South

Qualitative Health Research

Volumn 21, Issue 4, 2011, Pages 489-501

  Miles, Margaret Shandor ^a   Isler, Malika Roman ^a   Banks, Bahby B ^a   Sengupta, Sohini ^a   Corbie Smith, Giselle ^a  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

Author keywords

African Americans; HIV AIDS; minorities; stigma; stress distress; suffering

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AFRICAN AMERICAN; AGED; ARTICLE; DEMOGRAPHY; EMOTION; FEMALE; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INFORMATION PROCESSING; MALE; MENTAL STRESS; MIDDLE AGED; PARTICIPATORY RESEARCH; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; RURAL POPULATION; SOCIAL ISOLATION; SOCIAL PSYCHOLOGY; SOCIAL SUPPORT; STATISTICS; TIME; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; ADULT; AFRICAN AMERICANS; AGED; COMMUNITY-BASED PARTICIPATORY RESEARCH; EMOTIONS; FEMALE; FOCUS GROUPS; HIV INFECTIONS; HUMANS; MALE; MIDDLE AGED; PREJUDICE; QUALITATIVE RESEARCH; RESIDENCE CHARACTERISTICS; RURAL POPULATION; SOCIAL ISOLATION; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; TIME FACTORS; UNITED STATES;

EID: 79953079820     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732310387935     Document Type: Article

References (70)

1. Basta, T., Shacham, E., & Reece, M. (2008). Psychological distress and engagement in HIV-related services among individuals seeking mental health care. AIDS Care, 20, 969-976. doi:10.1080/09540120701767240
2. Baumgartner, L.M., & David, K.N. (2009). Accepting being poz: The incorporation of the HIV identity into the self. Qualitative Health Research, 19, 1730-1743. doi:10.1177/ 1049732309352907
3. Beauboeuf-Lafontant, T. (2007). " You have to show strength": An exploration of gender, race, and depression. Gender and Society, 21, 28-51.
4. Berger, M.T. (2004). Workable sisterhood: The political journey of stigmatized women with HIV/AIDS. Princeton, NJ: Princeton University Press. doi:10.1057/palgrave.fr.9400401
5. Bing, E.G., Burnam, M.A., Longshore, D., Fleishman, J.A., Sherbourne, C.D., London, A.S.,... Shapiro, M. (2001). Psychiatric disorders and drug use among human immunodeficiency virus-infected adults in the United States. Archives of General Psychiatry, 58, 721-728. (Pubitemid 32717795)
6. Black, B.P., & Miles, M.S. (2002). Calculus of disclosure in African American women with HIV. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31, 688-697. doi:10.1177/0884217502239211
7. Bletzer, K.V. (2007). Identity and resilience among persons with HIV: A rural African American experience. Qualitative Health Research, 17, 162-175. doi:10.1177/1049732 306297 885 (Pubitemid 46062964)
8. Boyatzis, R.E. (1988). Transforming qualitative information: Thematic analysis code development. Thousand Oaks, CA ; Sage.
9. Cassell, E.J. (1991). The nature of suffering. Oxford, UK: Oxford University Press.
10. Catz, S.L., Kelly, J.A., Bogart, L.M., Benotsch, E.G., & McAulit, T.L. (2000). Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychology, 19, 124-133. doi:10.1037/0278-6133.19.2.124
11. Ciesla, J.A., & Roberts, J.E. (2001). Meta-analysis of the relationship between HIV infection and risk for depressive disorders. American Journal of Psychiatry, 158, 725-730. (Pubitemid 32429839)
12. Cohen, M.A., Hoffman, R.G., Cromwell, C., Schmeidler, J., Ebrahim, F. Carrera, G.,... Jacobson, M.D. (2002). The prevalence of distress in persons with human immunodeficiency virus infection. Psychosomatics, 43, 10-15. (Pubitemid 34214156)
13. Cohn, S.E., Berk, M.L., Berry, S.H., Duan, N., Frankel, M.R., Klein, J.D.,... Bozette, S.A. (2001). The care of HIV-infected adults in rural areas of the United States. Journal of Acquired Immune Deficiency Syndrome, 28, 385-392. (Pubitemid 33101293)
14. Cook, J.A., Grey, D., Burke, J., Cohen, M.H., Gurtman, A.C., Richardson, J.L.,... Hessol, N.A. (2004). Depressive symptoms and AIDS-related mortality among a multisite cohort of HIV-positive women. American Journal of Public Health, 94, 1133-1140. (Pubitemid 38857313)
15. Corbie-Smith, G., Banks, B., Enright, D., Jones, B., Isler, M.R., Mohottige, D., & Miles, M.S. (2010). Community mapping, photography and spatial analysis: Triangulating methods to understand HIV risk in rural communities. Manuscript submitted for publication.
16. Corbie-Smith, G., Isler, M.R., Miles, M.S., & Banks, B. (2010). Community based HIV clinical trials: An integrated approach in underserved, rural, minority communities. Manuscript submitted for publication.
17. Cruess, D.G., Douglas, S.D., Petitto, J.M., Leserman, J., Ten Have, T., Gettes, D.,... Evans, D. L. (2003). Association of depression, CD8+ T lymphocytes and natural killer cell activity: Implications for morbidity and mortality in human immunodeficiency virus disease. Current Psychiatry Reports, 5, 445-450.
18. Duffy, L. (2005). Suffering, shame, and silence: The stigma of HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 16, 13-20. doi:10.1016/j.jana.2004.11.002 (Pubitemid 40250471)
19. Farinpour, R., Miller, E.N., Satz, P., Selnes, O.A., Cohen, B.A., Becker, J.T.,... Visscher, B.G. (2003). Psychosocial risk factors of HIV morbidity and mortality: Findings from the Multicenter AIDS Cohort Study. Journal of Clinical Experimental Neuropsychology, 25, 654-670. doi:10.1076/ jcen.25.5.654.14577 (Pubitemid 36808151)
20. Ferrell, B.R., & Coyle, N. (2008). The nature of suffering and the goals of nursing. New York: Oxford University Press.
21. Flaskerud, J.H., & Winslow, B.J. (1998). Conceptualizing vulnerable populations in health-related research. Nursing Research, 47, 69-78. (Pubitemid 128456470)
22. Frank, A.W. (2001). Can we research suffering ? Qualitative Health Research, 11, 353-362.
23. Gelberg, L., Andersen, R.M., & Leake, B.D. (2000). The behavioral model for vulnerable populations: Application to medical care use and outcomes for homeless people. Health Services Research, 34, 1273-1302. (Pubitemid 30075409)
24. Gielen, A.C., McDonnell, K.A., Burke, J.G., & O'Campo, P. (2000). Women's lives after an HIV-positive diagnosis: Disclosure and violence. Maternal and Child Health Journal, 4, 111-120. doi:10.1023/A:1009522321240
25. Health and Society Scholars Working Group on Stigma, Prejudice, Discrimination and Health. (2008). Stigma, prejudice, discrimination, and health. Social Science & Medicine, 67, 351-357. doi:10.1016/j.socscimed. 2008.03.023
26. Heckman, B.D., Somlai, A.M., Kalichman, S.C., Franzoi, S.L., & Kelly, J.A. (2006). Psychosocial differences between Whites and African Americans living with HIV/AIDS in rural areas of 13 U.S. states. Journal of Rural Health, 22, 131-139. doi:10.1111/j.1748-0361.2006.00021.x
27. Heckman, T.G., Anderson, E.S., Sikkema, K.J., Kochman, A., Kalichman, S.C., & Anderson, T. (2004). Emotional distress in nonmetropolitan persons living with HIV disease enrolled in a telephone-delivered, coping improvement group intervention. Health Psychology, 23, 94-100. doi:10.1037/0278-6133.23.1.94 (Pubitemid 38134103)
28. Ickovics, J.R., Hamburger, M.E., Vlahov, D., Schoenbaum, E.E., Schuman, P., Boland, R.J., & Moore, J. (2001). Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women: Longitudinal analysis from the HIV Epidemiologic Research Study. Journal of the American Medical Association, 285, 1466-1474. (Pubitemid 32221895)
29. Jensen, L., McLaughlin, D.K., & Slack, T. (2003). Rural poverty: The persisting challenge. In D. L. Brown & L. Swanson (Eds.), Challenges for rural America in the 21st Century. University Park, PA: Pennsylvania State University Press.
30. Kahn, D.L., & Steeves, R.H. (1996). An understanding of suffering grounded in clinical practice and research. In B. R. Ferrell (Ed.). Suffering (pp. 3-28). Sudbury, MA: Jones & Bartlett.
31. Kalichman, S.C., Heckman, T., Kochman, A., Sikkema, K., & Bergholte, J. (2000). Depression and thoughts of suicide among middle-aged and older persons living with HIV/ AIDS. Psychiatric Services, 51, 903-907. (Pubitemid 30456975)
32. Khattab, H. (1989). The silent endurance: Social conditions of women's reproductive health. Cairo, Egypt: UNICEF and the Population Council.
33. Kleinman, A. (1988). The illness narratives. New York: Basic Books.
34. Kleinman, A., Das, V., & Lock, M. (Eds.). (1997). Social suffering. Berkley, CA: University of California Press.
35. Krueger, R.A., & Casey, M.A. (2009). Focus groups: A practical guide for applied research. Thousand Oaks, CA: Sage.
36. Lee, R.S., Kochman, A., & Sikkema, K.J. (2002). Internalized stigma among people living with HIV-AIDS. AIDS and Behavior, 6, 309-319. doi:10.1023/A:1021144511957 (Pubitemid 36033593)
37. Logie, C., & Gadalla, T.M. (2009). Meta-analysis of health and demographic correlates of stigma toward people living with HIV. AIDS Care, 21, 742-753. doi:10.1080/09540120 802511877
38. Maman, S., Campbell, J., Sweat, M.D., & Gielen, A.C. (2000). The intersections of HIV and violence: Directions for future research and interventions. Social Science & Medicine, 50, 459-478. doi:10.1016/S0277- 9536(99)00270-1 (Pubitemid 29509733)
39. Mayers, A.M., & Svartberg, M. (2001). Existential loneliness: A review of the concept, its psychosocial precipitants and psychotherapeutic implications for HIV-infected women. British Journal of Medical Psychology, 74, 539-553.
40. Mellins, C.A., Kang, E., Leu, C.S., Havens, J.F., & Chesney, M.A. (2003). Longitudinal study of mental health and psychosocial predictors of medical treatment adherence in mothers living with HIV disease. AIDS Patient Care, 17, 407-416. doi:10.1089/108729103322277420 (Pubitemid 37034256)
41. Mendelson, E. (Ed.). (2007). W. H. Auden: Selected poems (p. 87). New York: Random House.
42. Milan, J.E. (2006). Posttraumatic growth among HIV/AIDS patients. Journal of Applied Social Psychology, 34, 2353-2376. doi:10.1111/j.1559-1816.2004. tb01981.x
43. Miles, M.S., Holditch-Davis, D., Eron, J., Black, B.P., Pedersen, C., & Harris, D. (2003). An HIV self-care symptom management intervention for African American mothers. Nursing Research, 52, 350-360.
44. Miles, M.S., Holditch-Davis, D., Pedersen, C., Eron, J., & Schwartz, T. (2007). Emotional distress in African American women with HIV. Journal of Community and Preventive Psychiatry, 33, 35-50. doi:10.1300/J005v33n01-04
45. Miller, G.E., Kemeny, M.E., Taylor, S.E., Cole, S.W., & Visscher, B.R. (1997). Social relationships and immune processes in HIV seropositive gay and bisexual men. Annals of Behavioral Medicine, 19, 139-151. doi:10.1007/BF02883331 (Pubitemid 27400944)
46. Morris, D.B. (1997). About suffering: Voice, genre, and moral community. In A. Kleinman, V. Das, & M. Lock (Eds.), Social suffering (pp. 25-45). Berkley, CA: University of California Press.
47. Morse, J.M. (2001). Toward a praxis theory of suffering. Advances in Nursing Science, 24, 47-59. (Pubitemid 33596707)
48. North Carolina Division of Public Health. (2009). NC 2008 HIV/STD Surveillance Report. Retrieved from http://www.epi.state.nc.us/epi/hiv/
49. Orlando, M., Burnam, M.A., Beckman, R., Morton, S.C., London, A.S., Bing, E.G., & Fleischman, J.A. (2002). Re-estimating the prevalence of psychiatric disorders in a nationally representative sample of persons receiving care for HIV: Results from the HIV Cost and Services Utilization Study. International Journal of Methods of Psychiatric Research, 11, 75-82. doi:10.1002/mpr.125 (Pubitemid 34947050)
50. Peplau, L.A., & Perlman, D. (1982). Perspectives on loneliness. In L. A. Peplau & D. Perlman (Eds.), Loneliness: A sourcebook of current theory, research and therapy (pp. 1-20). New York: Wiley.
51. Phelan, J.C., Link, B.G., & Dovidio, J.G. (2008). Stigma and prejudice: One animal or two? Social Science & Medicine, 67, 358-367. doi:10.1016/j.socscimed.2008.03.022
52. Ransom, D., Heckman, G.G., Anderson, T., Garske, J., Holroyd, K., & Basta, T. (2008). Telephone-delivered, interpersonal psychotherapy for HIV-infected rural persons with depression: A pilot trial. Psychiatric Services, 59, 871-877. doi:10.1176/appi.ps.59.8.871
53. Reif, S., Whetten, K., Ostermann, J.I., & Raper, J.L. (2006). Characteristics of HIV-infected adults in the deep South and their utilization of mental health services: A rural vs. urban comparison. AIDS Care, 18 (Suppl.), S10 - S17. doi:10.1080/ 09540120600838738
54. Reutter, L.I., Stewart, M.J., Veenstra, G., Love, R., Raphael, D., & Makwarimba, E. (2009). "Who do they think we are, anyway?" Perceptions of and responses to poverty stigma. Qualitative Health Research, 19, 297-311. doi:10.1177/ 1049732308330246
55. Safren, S.A., Gershuny, B.S., & Hendriksen, E. (2003). Symptoms of posttraumatic stress and death anxiety in persons with HIV and medication adherence difficulties. AIDS Patient Care and STDs, 17, 657-664. doi:10.1089/ 108729103771928717 (Pubitemid 38031553)
56. Saldana, J. (2009). The coding manual for qualitative researchers. Thousand Oaks, CA ; Sage.
57. Shambley-Ebron, D.Z., & Boyle, J.S. (2006). In our grandmother's footsteps: Perceptions of being strong in African American women with HIV/AIDS. Advances in Nursing Science, 29, 195-206. (Pubitemid 44874621)
58. Shiu-Thornton, S. (2005). " Like a bird in a cage": Vietnam survivors talk about domestic violence. Journal of International Violence, 20, 959-964. doi:10.1177/0886260505277677
59. Siegel, K., & Schrimshaw, E.W. (2000). Perceiving benefits in adversity: Stress-related growth in women living with HIV/AIDS. Social Science & Medicine, 51, 1543-1554. doi:10.1016/S0277-9536(00)00144-1
60. Straits-Troster, K.A., Patterson, T.L., Semple, S.J., Temoshak, L., Roth, P.G., McCutchaw, J.A.... Grant, I. (1994). The relationship between loneliness, interpersonal comfort, and immunologic status in HIV-infected men. Psychology and Health, 9, 203-219. doi:10.1080/08870449408407481
61. Tickamyer, A.R., & Duncan, C.M. (1990). Poverty and opportunity structure in rural America. Annual Review of Sociology, 16, 67-86. doi:10.1146/annurev.so.16.080190.000435
62. U.S. Census Bureau. (2009). State and county quick facts. Retrieved from http://quickfacts.census.gov/qfd/states/37000.html
63. U.S. Department of Health and Human Services. (2010). The HIV/AIDS programs: About Ryan White Care. Retrieved from http://hab.hrsa.gov/
64. Vranceanu, A., Safren, S.A., Minyi, L., Coady, W.M., Skolink, P.R., Rogers, W.H., & Wilson, I.B. (2008). The relationship of post-traumatic stress disorder and depression to antiretroviral medication adherence in persons with HIV. AIDS Patient Care and STDs, 22, 313-321. doi:10.1089/ apc.2007.0069 (Pubitemid 351562964)
65. Ward, E.C., Clark, L.O., & Heidrich, S. (2009). African American women's beliefs, coping behaviors, and barriers to seeking mental health services. Qualitative Health Research, 19, 1589-1601. doi:10.1177/ 1049732309350686
66. Weiss, R.S., Bowlby, J., & Riesman, D. (1973). Loneliness: The experience of emotional and social isolation. Cam-bridge, MA: MIT Press.
67. Whetten, K., Reif, S., Whetten, R., & Murphy-McMillian L.K. (2008). Trauma, mental health, distrust, and stigma among HIV-positive persons: Implications for effective care. Psychosomatic Medicine, 70, 531-538. doi:10.1097/PSY.0b013e31817749dc
68. Whetten-Goldstein, K., & Nguyen, T.Q. (2002). " You're the first one I've told:" New faces of HIV in the South. New Brunswick, NJ: Rutgers University Press.
69. Wilkinson, I. (2005). The sociology of suffering. Malden, MA: Polity Press.
70. Woods-Giscombé, C.L. (2010). Superwoman schema: African American women's views on stress, strength, and health. Qualitative Health Research, 20, 668-683. doi:10.1177/ 1049732310361892