AIDS and Behavior

, Volume 19, Issue 11, pp 2123–2129 | Cite as

Informal HIV Caregiver Proxy Reports of Care Recipients’ Treatment Adherence: Relationship Factors Associated with Concordance with Recipients’ Viral Suppression

  • Amy R. KnowltonEmail author
  • Mary M. Mitchell
  • Allysha C. Robinson
  • Trang Q. Nguyen
  • Sarina Isenberg
  • Julie Denison
Original Paper


To explore the role of informal caregivers in adherence, we compared adherence reports by caregivers to those of care recipients. We identified individual-level and relationship factors associated with agreement between caregivers’ reports of recipients’ adherence and assessed viral suppression. Participants were care recipients, who were on ART and had ever injected drugs, and their caregivers (N = 258 dyads). Nearly three-fourths of caregivers’ reports of recipients’ ART adherence agreed with recipients’ viral suppression status. Agreement was associated with recipient age and expressing affection or gratitude to the caregiver, caregiver’s having been close to someone who died of HIV/AIDS, and caregiver’s fear of caregiving-related HIV (re)infection, while it was negatively associated with recipient’s limited physical functioning. Our findings support the utility of caregiver proxy reports of care recipients’ ART adherence and suggest ways to identify and promote HIV caregiver attention to and support of this vulnerable population’s ART adherence.


Informal HIV caregiving Black/African American Injection drug/substance abuse Antiretroviral therapy adherence Measurement concordance/agreement 



This study was supported by Grants R01 DA019413, R01 NR14050-01, and T-32DA007292 from the National Institutes of Health.

Conflict of interest



  1. 1.
    Robles TF, Kiecolt-Glaser JK. The physiology of marriage: pathways to health. Physiol Behav. 2003;79(3):409–16.CrossRefPubMedGoogle Scholar
  2. 2.
    Uchino BN. Social support and physical health: understanding the health consequences of relationships. New Haven: Yale University Press; 2004.CrossRefGoogle Scholar
  3. 3.
    Chander G, Himelhoch S, Moore RD. Substance abuse and psychiatric disorders in HIV-positive patients: epidemiology and impact on antiretroviral therapy. Drugs. 2006;66(6):769–89.CrossRefPubMedGoogle Scholar
  4. 4.
    Lucas GM, Griswold M, Gebo KA, et al. Illicit drug use and HIV-1 disease progression: a longitudinal study in the era of highly active antiretroviral therapy. Am J Epidemiol. 2006;163(5):412–20.CrossRefPubMedGoogle Scholar
  5. 5.
    Lemly DC, Shepherd BE, Hulgan T, et al. Race and sex differences in antiretroviral therapy use and mortality among HIV-infected persons in care. J Infect Dis. 2009;199(7):991–8.CrossRefPubMedGoogle Scholar
  6. 6.
    Losina E, Schackman BR, Sadownick SN, et al. Racial and sex disparities in life expectancy losses among HIV-infected persons in the United States: impact of risk behavior, late initiation, and early discontinuation of antiretroviral therapy. Clin Infect Dis. 2009;49(10):1570–8.PubMedCentralCrossRefPubMedGoogle Scholar
  7. 7.
    Knowlton A, Arnsten J, Eldred L, et al. Individual, interpersonal, and structural correlates of effective HAART use among urban active injection drug users. J Acquir Immune Defic Syndr. 2006;41(4):486–92.CrossRefPubMedGoogle Scholar
  8. 8.
    Knowlton A, Hua W, Latkin C. Social support among HIV positive injection drug users: implications to integrated intervention for HIV positives. AIDS Behav. 2004;8(4):357–63.CrossRefPubMedGoogle Scholar
  9. 9.
    Knowlton A, Hua W, Latkin C. Social support networks and medical service use among HIV-positive injection drug users: implications to intervention. AIDS Care. 2005;17(4):479–92.CrossRefPubMedGoogle Scholar
  10. 10.
    Centers for Disease Control and Prevention (2011). HIV Surveillance Report, vol. 23. Accessed 25 March 2015.
  11. 11.
    Turner HA, Catania JA, Gagnon J. The prevalence of informal care giving to persons with AIDS in the United States: caregiver characteristics and their implications. Soc Sci Med. 1994;38(11):1543–52.CrossRefPubMedGoogle Scholar
  12. 12.
    Edwards LV. Perceived social support and HIV/AIDS medication adherence among African-American women. Qual Health Res. 2006;16:679–91.CrossRefPubMedGoogle Scholar
  13. 13.
    Johnson MO, Dilworth SE, Neilands TB. Partner reports of patients’ HIV treatment adherence. J Acquir Immune Defic Syndr. 2011;56(4):e117–8.PubMedCentralCrossRefPubMedGoogle Scholar
  14. 14.
    Molloy GJ, Stamatakis E, Randall G, et al. Marital status, gender and cardiovascular mortality: behavioural, psychological distress and metabolic explanations. Soc Sci Med. 2009;69(2):223–8.PubMedCentralCrossRefPubMedGoogle Scholar
  15. 15.
    Mosack KE, Petroll A. Patients’ perspectives on informal caregiver involvement in HIV health care appointments. AIDS Patient Care STDS. 2009;23(12):1043–51.PubMedCentralCrossRefPubMedGoogle Scholar
  16. 16.
    Knowlton AR, Arnsten JH, Gourevitch MN, et al. Microsocial environmental influences on highly active antiretroviral therapy outcomes among active injection drug users: the role of informal caregiving and household factors. J Acquir Immune Defic Syndr. 2007;46(2):S110–9.CrossRefPubMedGoogle Scholar
  17. 17.
    Knowlton AR, Yang C, Bohnert A, et al. Informal care and reciprocity of support are associated with HAART adherence among men in Baltimore, MD, USA. AIDS Behav. 2010;15(7):1429–36.CrossRefGoogle Scholar
  18. 18.
    Chandola T, Marmot M, Siegrist J. Failed reciprocity in close social relationships and health: findings from the Whitehall II study. J Psychosom Res. 2007;63(4):403–11.PubMedCentralCrossRefPubMedGoogle Scholar
  19. 19.
    Ingersoll-Dayton B, Antonucci TC. Reciprocal and nonreciprocal social support: contrasting sides of intimate relationships. J Gerontol. 1988;43(3):S65–73.CrossRefPubMedGoogle Scholar
  20. 20.
    Buunk BP, Schaufeli WB. Reciprocity in interpersonal relationships: an evolutionary perspective on its importance for health and well-being. Eur Rev Soc Psychol. 1999;10(1):259–91.CrossRefGoogle Scholar
  21. 21.
    Tovanabutra S, Robison V, Wongtrakul J, et al. Male viral load and heterosexual transmission of HIV-1 subtype E in northern Thailand. J Acquir Immune Defic Syndr. 2002;29(3):275–83.CrossRefPubMedGoogle Scholar
  22. 22.
    Mitchell MM, Robinson AC, Nguyen TQ, et al. Latent growth curve analyses of emotional support for informal caregivers of vulnerable persons with HIV/AIDS. AIDS Care. 2015. doi: 10.1080/09540121.2015.1032202.Google Scholar
  23. 23.
    Mitchell MM, Robinson AC, Nguyen TQ, et al. Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS. AIDS Care. 2014;8:1–5.Google Scholar
  24. 24.
    Mitchell MM, Robinson AC, Wolff J, et al. Perceived mental health status of injection drug users living with HIV/AIDS: concordance between informal HIV caregivers and care recipient self-reports and associations with caregiving burden and reciprocity. AIDS Behav. 2014;18(6):1103–13.PubMedCentralCrossRefPubMedGoogle Scholar
  25. 25.
    Arnsten JH, Demas PA, Farzadegan H, et al. Antiretroviral therapy adherence and viral suppression in HIV-infected drug users: comparison of self-report and electronic monitoring. Clin Infect Dis. 2001;33(8):1417–23.PubMedCentralCrossRefPubMedGoogle Scholar
  26. 26.
    Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(3):179–86.CrossRefPubMedGoogle Scholar
  27. 27.
    Latkin CA, Forman-Hoffman VL, D’Souza G, et al. Associations between medical service use and HIV risk among HIV-positive drug users in Baltimore, MD. AIDS Care. 2004;16(7):901–8.CrossRefPubMedGoogle Scholar
  28. 28.
    Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583–94.CrossRefPubMedGoogle Scholar
  29. 29.
    Horwitz AV. Siblings as caregivers for the seriously mentally ill. Milbank Q. 1993;71(2):323–39.CrossRefPubMedGoogle Scholar
  30. 30.
    IBM Corporation. IBM SPSS statistics for windows, version 20.0. Armonk: IBM Corporation; 2011.Google Scholar
  31. 31.
    Rook KS, Pietromonaco PR, Lewis MA. When are dysphoric individuals distressing to others and vice versa—effects of friendship, similarity, and interaction task. J Pers Soc Psychol. 1994;67(3):548–59.CrossRefPubMedGoogle Scholar
  32. 32.
    Segrin C. Interpersonal processes in psychological problems. New York, NY: Guilford Press; 2001.Google Scholar
  33. 33.
    Bunting SM. Sustaining the relationship: women’s caregiving in the context of HIV disease. Health Care Women Int. 2001;22(1–2):131–48.CrossRefPubMedGoogle Scholar
  34. 34.
    Knowlton AR, Yang C, Bohnert A, et al. Main partner factors associated with worse adherence to HAART among women in Baltimore, Maryland: a preliminary study. AIDS Care. 2011;23(9):1102–10.PubMedCentralCrossRefPubMedGoogle Scholar
  35. 35.
    Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Crit Care Med. 2001;29(2 Suppl):N26–33.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Amy R. Knowlton
    • 1
    Email author
  • Mary M. Mitchell
    • 1
  • Allysha C. Robinson
    • 1
  • Trang Q. Nguyen
    • 1
  • Sarina Isenberg
    • 1
  • Julie Denison
    • 2
  1. 1.Department of Health, Behavior and SocietyJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  2. 2.Department of International HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA

Personalised recommendations