Skip to main content

Advertisement

SpringerLink
Log in

Quality of Life Among Caregivers of a Vulnerable Population Living with HIV: Caregiving and Relationship Factors

  • Original Paper
  • Published:
AIDS and Behavior Aims and scope Submit manuscript

Abstract

Literature on health-related quality of life (HRQOL) has focused on people living with chronic conditions, with less attention given to HRQOL among informal caregivers. We used cross-sectional dyadic data from both care recipients (CR) living with HIV and the person they identified as their primary informal (unpaid) caregiver (CG) to identify psychosocial and caregiving relationship factors (including, CG role ambivalence and caregiving-related stress) associated with CG HRQOL. We conducted confirmatory factor analysis and structural equation modeling testing. The results highlight interdependent effects of the CG-CR relationship and reveal pathways whereby relationship interactions positively and negatively impact CGs’ HRQOL. Affiliative stigma, CG-CR communication, CRs’ reciprocity of support and other psychosocial factors indirectly and differentially affected physical and mental HRQOL through effects on secondary stress and role ambivalence. Dyad-focused intervention on interpersonal communication and support exchange may improve HRQOL and resilience of CGs of vulnerable people living with HIV.

Resumen

La literatura sobre calidad de vida relacionada con la salud (CVRS) se ha centrado en las personas que viven con enfermedades crónicas, con menos atención a la CVRS entre los cuidadores informales. Utilizamos datos diádicos transversales de recibidores de cuidado (RC) que viven con VIH y de la persona que identificaron como su principal cuidador informal (no remunerado) (CI) para identificar los factores psicosociales y en la relación de cuidado (incluyendo la ambivalencia del rol de CI y del estrés) asociado con calidad de vida. Realizamos análisis factoriales confirmatorios y pruebas de modelación de ecuaciones estructurales. Los resultados demostraron los efectos interdependientes de la relación entre el cuidador y el recibidor de cuidado y revelan cómo las interacciones de la relación impactan la calidad de vida de los cuidadores. El estigma, la comunicación en la relación, la reciprocidad de apoyo de los recibidores de cuidado y otros factores psicosociales afectaron indirecta y diferencialmente la calidad de vida física y mental a través de los efectos sobre el estrés secundario y la ambivalencia de roles. Las intervenciones diádicas centradas en la comunicación interpersonal y la facilitación de apoyo pueden mejorar la calidad de vida y la capacidad de recuperación de los cuidadores de las personas vulnerables que viven con el VIH.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Hagen SA, United States. Financing long-term care for the elderly. Washington, D.C.: Congress of the U.S., Congressional Budget Office; 2004.

  2. Institute of Medicine. Retooling for an aging America: building the health care workforce. Washington, D.C.: National Academies Press; 2008.

  3. DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health Psychol. 2004;23(2):207.

    Google Scholar 

  4. Berg CJ, Michelson SE, Safren SA. Behavioral aspects of HIV care: adherence, depression, substance use, and HIV-transmission behaviors. Infect Dis Clin. 2007;21(1):181.

    Google Scholar 

  5. Mosack KE, Petroll A. Patients’ perspectives on informal caregiver involvement in HIV health care appointments. AIDS Patient Care STDs. 2009;23(12):1043.

    PubMed  PubMed Central  Google Scholar 

  6. Butler AM, Williams PL, Howland LC, Storm D, Hutton N, Seage GRI II. Impact of disclosure of HIV infection on health-related quality of life among children and adolescents with HIV infection. Pediatrics. 2009;123(3):935.

    PubMed  PubMed Central  Google Scholar 

  7. Korthuis PT, Zephyrin LC, Fleishman JA, et al. Health-related quality of life in HIV-infected patients: the role of substance use. AIDS Patient Care STDs. 2008;22(11):859.

    PubMed  PubMed Central  Google Scholar 

  8. Rodriguez-Penney A, Iudicello JE, Riggs PK, et al. Co-morbidities in persons infected with HIV: increased burden with older age and negative effects on health-related quality of life. AIDS Patient Care STDs. 2013;27(1):5.

    PubMed  PubMed Central  Google Scholar 

  9. Knowlton AR. Informal HIV caregiving in a vulnerable population: toward a network resource framework. Soc Sci Med. 2003;56(6):1307.

    PubMed  Google Scholar 

  10. Turner HA, Catania JA, Gagnon J. The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications. Soc Sci Med. 1994;38(11):1543.

    CAS  PubMed  Google Scholar 

  11. Bullock K, Crawford SL, Tennstedt SL. Employment and caregiving: exploration of African American caregivers. Soc Work. 2003;48(2):150.

    PubMed  Google Scholar 

  12. Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J. 2004;170(12):1795.

    Google Scholar 

  13. Leblanc AJ, London AS, Aneshensel CS. The physical costs of AIDS caregiving. Soc Sci Med. 1997;45(6):915.

    CAS  PubMed  Google Scholar 

  14. Williams AL. Family caregivers to adults with cancer: the consequences of caring. recent results in cancer research. Fortschritte Der Krebsforschung. Progres Dans Les Recherches Sur Le Cancer. 2018;210:87.

    PubMed  Google Scholar 

  15. Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115(18):4362.

    PubMed  Google Scholar 

  16. Perkins M, Howard VJ, Wadley VG, et al. Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol Ser B Psychol Sci Soc Sci. 2013;68(4):504.

    Google Scholar 

  17. Aneshensel CS, Pearlin LI, Schuler RH. Stress, role captivity, and the cessation of caregiving. J Health Soc Behav. 1993;34(1):54.

    CAS  PubMed  Google Scholar 

  18. Kreutzer JS, Rapport LJ, Marwitz JH et al. Caregivers’ well-being after traumatic brain injury: a multicenter prospective investigation. Arch Phys Med Rehabil 2009;90(6):939.

    PubMed  Google Scholar 

  19. Pearlin LI, Mullan JT, Semple SJ, Skaff MM (1990) Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 30:583. https://doi.org/10.1093/geront/30.5.583

    Article  CAS  PubMed  Google Scholar 

  20. Mitchell M, Robinson A, Nguyen T, Knowlton A. Informal caregiver characteristics associated with viral load suppression among current or former injection drug users living with HIV/AIDS. AIDS Behav. 2015;19(11):2117.

    PubMed  PubMed Central  Google Scholar 

  21. Knowlton A, Yang C, Bohnert A, Wissow L, Chander G, Arnsten J. Informal care and reciprocity of support are associated with HAART adherence among men in Baltimore, MD, USA. AIDS Behav. 2011;15(7):1429.

    PubMed  PubMed Central  Google Scholar 

  22. Andrinopoulos K, Clum G, Murphy DA, et al. Health related quality of life and psychosocial correlates among HIV-infected adolescent and young adult women in the US. AIDS Educ Prev. 2011;23(4):367.

    PubMed  PubMed Central  Google Scholar 

  23. Clayson DJ, Wild DJ, Quarterman P, Duprat-Lomon I, Kubin M, Coons SJ. A comparative review of health-related quality-of-life measures for use in HIV/AIDS clinical trials. Pharmacoeconomics. 2006;24(8):751.

    PubMed  Google Scholar 

  24. Garvie PA, Lawford J, Banet MS, West RL. Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literature. Child Care, Health Dev. 2009;35(4):440.

    CAS  Google Scholar 

  25. Wu AW, Gifford A, Asch S, Cohn SE, Bozzette SA, Yurk R. Quality-of-care indicators for HIV/AIDS. Dis Manag Health Outcomes. 2000;7(6):315.

    CAS  Google Scholar 

  26. Wu AW, Hays RD, Kelly S, Malitz F, Bozzette SA. Applications of the medical outcomes study health-related quality of life measures in HIV/AIDS. Qual Life Res. 1997;6(6):531.

    CAS  PubMed  Google Scholar 

  27. Ryff CD, Love GD, Urry HL, et al. Psychological well-being and ill-being: Do they have distinct or mirrored biological correlates? Psychother Psychosom. 2006;75(2):85.

    PubMed  Google Scholar 

  28. Ware J Jr, Keller SD, Gandek B, Brazier JE, Sullivan M. Evaluating translations of health status questionnaires. Methods from the IQOLA project. International quality of life assessment. Int J Technol Assess Health Care. 1995;11(3):525.

    PubMed  Google Scholar 

  29. Saitz R, Cheng DM, Winter M, et al. Chronic care management for dependence on alcohol and other drugs: the AHEAD randomized trial. J Am Med Assoc. 2013;310(11):1156.

    CAS  Google Scholar 

  30. Samet JH, Larson MJ, Horton NJ, Doyle K, Winter M, Saitz R. Linking alcohol- and drug-dependent adults to primary medical care: a randomized controlled trial of a multi-disciplinary health intervention in a detoxification unit. Addiction. 2003;98(4):509.

    PubMed  Google Scholar 

  31. Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(3):179–86.

    CAS  PubMed  Google Scholar 

  32. Canam C, Acorn S. Quality of life for family caregivers of people with chronic health problems. Rehabil Nurs Official J Assoc Rehabil Nurses. 1999;24(5):192.

    CAS  Google Scholar 

  33. Renwick R, Brown I, Nagler M. Quality of life in health promotion and rehabilitation: conceptual approaches, issues, and applications. Sage Publications, Inc; 1996.

  34. Pearlin LI, Aneshensel CS, LeBlanc AJ. The forms and mechanisms of stress proliferation: the case of AIDS caregivers. J Health Soc Behav. 1997;38(3):223.

    CAS  PubMed  Google Scholar 

  35. Brown M, Stetz K. The labor of caregiving: a theoretical model of caregiving during potentially fatal illness. Qual Health Res. 1999;9(2):182.

    CAS  PubMed  Google Scholar 

  36. Cantor M. Strain among caregivers: a study of experience in the United States. Gerontologist. 1983;23(6):597–604.

    CAS  PubMed  Google Scholar 

  37. Lawrence RH, Tennstedt SL, Assmann SF. Quality of the caregiver–care recipient relationship: Does it offset negative consequences of caregiving for family caregivers? Psychol Aging. 1998;13(1):150.

    CAS  PubMed  Google Scholar 

  38. Kadushin G. Gay men with AIDS and their families of origin: an analysis of social support. Health Soc Work. 1996;21(2):141.

    CAS  PubMed  Google Scholar 

  39. Rotheram-Borus M, Swendeman D, Lee S, Li L, Amani B, Nartey M. Interventions for families affected by HIV. Transl Behav Med. 2011;1(2):313.

    PubMed  PubMed Central  Google Scholar 

  40. Shim B, Barroso J, Davis LL. A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences. Int J Nurs Stud. 2012;49(2):220.

    PubMed  Google Scholar 

  41. Pine J, Steffen AM. Intergenerational ambivalence and dyadic strain: understanding stress in family care partners of older adults. Clin Gerontol. 2019;42(1):90.

    PubMed  Google Scholar 

  42. Connidis IA. Exploring ambivalence in family ties: progress and prospects. J Marriage Family. 2015;77(1):77.

    Google Scholar 

  43. Chan KY, Yang Y, Zhang KL, Reidpath DD. Disentangling the stigma of HIV/AIDS from the stigmas of drugs use, commercial sex and commercial blood donation—a factorial survey of medical students in China. BMC Public Health. 2007;7:280.

    PubMed  PubMed Central  Google Scholar 

  44. Goffman E. Stigma. New York: J. Aronson; 1963.

    Google Scholar 

  45. Wight RG, Aneshensel CS, Murphy DA, Miller-Martinez D, Beals KP. Perceived HIV stigma in AIDS caregiving dyads. Soc Sci Med. 2006;62(2):444.

    PubMed  Google Scholar 

  46. Mitchell M, Knowlton A. Caregiver role overload and network support in a sample of predominantly low-income, African-American caregivers of persons living with HIV/AIDS: a structural equation modeling analysis. AIDS Behav. 2012;16(2):278.

    PubMed  PubMed Central  Google Scholar 

  47. Werner S, Shulman C. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables. Res Dev Disabil. 2013;34(11):4103.

    PubMed  Google Scholar 

  48. 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.

    PubMed  PubMed Central  Google Scholar 

  49. Bunting SM. Sustaining the relationship: women’s caregiving in the context of HIV disease. Health Care Woman Int. 2001;22(1–2):131–48.

    CAS  Google Scholar 

  50. Pearlin LI, Aneshensel CS. Caregiving: the unexpected career. Social Justice Res. 1994;7(4):373.

    Google Scholar 

  51. Yates ME, Tennstedt S, Chang B. Contributors to and mediators of psychological well-being for informal caregivers. J Gerontol Ser B Psychol Sci Soc Sci. 1999;54(1):P12.

    CAS  Google Scholar 

  52. Aneshensel CS. Sociological inquiry into mental health: the legacy of Leonard I. Pearlin. J Health Soc Behav. 2015;56(2):166.

    PubMed  Google Scholar 

  53. Aneshensel CS, Avison WR. The stress process: an appreciation of leonard I. Pearlin. Soci Mental Health. 2015;5(2):67–85.

    Google Scholar 

  54. Pearlin LI. Stress process. J Health Soc Behav. 1981;22:337.

    CAS  PubMed  Google Scholar 

  55. Mitchell MM, Robinson AC, Nguyen TQ, Smith TJ, Knowlton AR. Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS. AIDS Care. 2015;27(2):218.

    PubMed  Google Scholar 

  56. Schuler BR, DeForge BR. The 12-item short form health survey: a confirmatory factor analysis in an urban African American sample. Health Soc Work. 2015;40(4):e135.

    Google Scholar 

  57. GlaxoSmithKline. How to score and interpret single-item health status measures: a manual for users of the of the SF-8 health survey: (with a supplement on the SF-6 health survey). Lincoln, RI; Boston, MA: QualityMetric, Inc. ; Health Assessment Lab; 2001.

    Google Scholar 

  58. Ware J Jr, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220.

    PubMed  Google Scholar 

  59. Ware JE, Kosinski M, Bayliss MS, McHorney CA. Comparison of methods for the scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the medical outcomes study. Med Care. 1995;33(4):264.

    Google Scholar 

  60. Mitchell MM, Knowlton A. Stigma, disclosure, and depressive symptoms among informal caregivers of people living with HIV/AIDS. AIDS Patient Care STDs. 2009;23(8):611.

    PubMed  PubMed Central  Google Scholar 

  61. Mitchell M, Nguyen T, Isenberg S, Maragh-Bass A, Keruly J, Knowlton A. Psychosocial and service use correlates of health-related quality of life among a vulnerable population living with HIV/AIDS. AIDS Behav. 2017;21(6):1580.

    PubMed  PubMed Central  Google Scholar 

  62. Abramson J, Berger A, Krumholz HM, Vaccarino V. Depression and risk of heart failure among older persons with isolated systolic hypertension. Arch Intern Med. 2001;161(14):1725.

    CAS  PubMed  Google Scholar 

  63. Lewinsohn PM, Teri L. Selection of depressed and nondepressed subjects on the basis of self-report data. J Consult Clin Psychol. 1982;50(4):590.

    CAS  PubMed  Google Scholar 

  64. Knowlton A, Mitchell M, Robinson A, Nguyen T, Isenberg S, Denison J. Informal HIV caregiver proxy reports of care recipients’ treatment adherence: relationship factors associated with concordance with recipients’ viral suppression. AIDS Behavior. 2015;19(11):2123.

    PubMed  Google Scholar 

  65. Pearlin LI, Mullan JT. The structure and functions of AIDS caregiving relationships. Psychosoc Rehabil J. 1994;17(4):51.

    Google Scholar 

  66. Muthén LK, Muthén BO. Mplus user’s guide. Los Angeles, CA: Muthén & Muthén; 2012.

    Google Scholar 

  67. Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model 1999;6(1):1.

    Google Scholar 

  68. Cohen S, Wills TA. Stress, social support, and the buffering hypothesis. Psychol Bull. 1985;98(2):310.

    CAS  PubMed  Google Scholar 

  69. Wrubel J, Richards TA, Folkman S, Acree MC. Tacit definitions of informal caregiving. J Adv Nursing (Wiley-Blackwell). 2001;33(2):175.

    CAS  Google Scholar 

  70. Adams KB, McClendon MJ, Smyth KA. Personal losses and relationship quality in dementia caregiving. Dementia Int J Soc Res Practice. 2008;7(3):301.

    Google Scholar 

Download references

Acknowledgements

This study was supported by Grants R01 DA019413, R01 NR14050-01 and the Johns Hopkins Center for AIDS Research 1P30 AI094189 from the National Institutes of Health. TQN's time was supported by Grant T-32DA007292.

Author information

Authors and Affiliations

  1. Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Amy R. Knowlton, Tuo-Yen Tseng, Zachary Catanzarite & Mary M. Mitchell

  2. Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Trang Q. Nguyen

  3. Temmy Latner Centre for Palliative Care, Sinai Health System, Department of Family and Community Medicine, University of Toronto, Toronto, USA

    Sarina Isenberg

  4. Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Dulce Cruz-Oliver

Authors
  1. Amy R. Knowlton
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Trang Q. Nguyen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sarina Isenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Tuo-Yen Tseng
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Zachary Catanzarite
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Mary M. Mitchell
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Dulce Cruz-Oliver
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Amy R. Knowlton.

Ethics declarations

Conflicts of interest

The authors declared that they have no conflict of interest.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Knowlton, A.R., Nguyen, T.Q., Isenberg, S. et al. Quality of Life Among Caregivers of a Vulnerable Population Living with HIV: Caregiving and Relationship Factors. AIDS Behav 25, 360–376 (2021). https://doi.org/10.1007/s10461-020-02975-2

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-020-02975-2

Keywords

Palabras de búsqueda

Search

Navigation