Skip to main content

Advertisement

SpringerLink
Log in

Coping with HIV Treatment Side Effects: Conceptualization, Measurement, and Linkages

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

Abstract

Side effects from HIV treatments impact quality of life (QOL) and adherence to care, and influence decisions about health care. The purposes of this study are to describe the development of a measure of coping with HIV treatment side effects, the SECope, and to provide support for the reliability and validity of the measure. Based in Stress and Coping Theory, the 20-item measure assesses strategies for coping with HIV treatment side effects, and includes scales of Positive Emotion Focused Coping, Social Support Seeking, Nonadherence, Information Seeking, and Taking Side Effect Medications. The factor structure was supported by exploratory and confirmatory factor analyses with two samples of HIV+ individuals on treatment (Ns = 173 and 233). The SECope has demonstrated reliability (internal consistency and test–retest), and its validity is supported through construct and criterion-referenced analyses. Nonadherence as a strategy for coping with side effects was associated with poorer provider relations, lower treatment knowledge, and higher beliefs of treatment effectiveness. Findings have the potential to inform investigations and interventions in the context of treatment of HIV disease and other medical conditions.

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.

Institutional subscriptions

Similar content being viewed by others

References

  • Allen, M. J., & Yen, W. M. (1979). Introduction to measurement theory. Monterey, Calif.: Brooks/Cole Pub. Co.

    Google Scholar 

  • Ammassari, A., Murri, R., Pezzotti, P., Trotta, M., Ravisio, L., & DeLonis, P. (2001). Self reported symptoms and medication side effects influence adherence to highly active antiretroviral therapy in persons with HIV infection. Journal of Acquired Immune Deficiency Syndromes, 28, 445–449.

    PubMed  CAS  Google Scholar 

  • Beck, A. T. (1967). Depression: Causes and treatment. Philadelphia, PA: University of Pennsylvania Press.

    Google Scholar 

  • Beck, A. T., & Steer, R. A. (1984). Internal consistencies of the original and revised Beck Depression Inventory. Journal of Clinical Psychology, 40, 1365–1367.

    Article  PubMed  CAS  Google Scholar 

  • Bentler, P. M., & Bonnett, D. G. (1980). Significance tests and goodness of fit in the analysis of covariance structures. Psychological Bulletin, 88, 588–606.

    Article  Google Scholar 

  • Binik, Y. M., Chowanec, G. D., & Devins, G. M. (1990). Marital role strain, illness intrusiveness, and their impact on marital and individual adjustment in end-stage renal disease. Psychology & Health, 4, 245–257.

    Google Scholar 

  • Breitbart, W., McDonald, M. V., Rosenfeld, B., Monkman, N. D., & Passik, S. (1998). Fatigue in ambulatory AIDS patients. Journal of Pain & Symptom Management, 15, 159–167.

    Article  CAS  Google Scholar 

  • Browne, M. W., & Cudek, R. (1993). Alternative ways of assessing model fit. In K. A. Bollen & J. S. Long (Eds.), Testing structural equation models. Newbury Park, CA: Sage Publications.

  • Chene, G., May, M., Costagliola, D., Monforte, A. d. A., Junghans, C., Wolf, F. d., et al. (2002). Prognosis of HIV-1 infected drug naïve patients starting potent antiretroviral therapy. ART Cohort Collaboration. Paper presented at the XIV International AIDS Conference, Barcelona.

    Google Scholar 

  • Chesney, M. A. (2000). Factors affecting adherence to antiretroviral therapy. Clinical Infectious Diseases, 30(Suppl 2), S171–S176.

    Article  PubMed  Google Scholar 

  • Chesney, M. A., Ickovics, J. R., Chambers, D. B., Gifford, A. L., Neidig, J., Zwickl, B., et al. (2000). Self-reported adherence to antiretroviral medications among participants in HIV clinical trials: the AACTG adherence instruments. Patient Care Committee & Adherence Working Group of the Outcomes Committee of the Adult AIDS Clinical Trials Group (AACTG). AIDS Care, 12, 255–266.

    Article  PubMed  CAS  Google Scholar 

  • Chesney, M. A., Neilands, T. B., Chambers, D. B., Taylor, J. M., & Folkman, S. (2006). A validity and reliability study of the coping self-efficacy scale. British Journal of Health Psychology, 11, 421–437.

    Article  PubMed  Google Scholar 

  • Comrey, A. L. (1973). A first course in factor analysis. New York: Academic Press.

    Google Scholar 

  • Cutrona, C. E. (1989). Ratings of social support by adolescents and adult informants: Degree of correspondence and prediction of depressive symptoms. Journal of Personality & Social Psychology, 57, 723–730.

    Article  CAS  Google Scholar 

  • Cutrona, C. E., & Russell, D. W. (1990). Type of social support and specific stress: Toward a theory of optimal matching. In B. R. Sarason & I. G. Sarason (Eds.), Social support: An interactional view (pp. 319–366). New York: Wiley.

  • D’Zurilla, T. J., Nezu, A. M., & Maydeu-Olivares, A. (2002). Social problem solving inventory-revised. North Tonoawanda, NY: Multi-health Systems.

    Google Scholar 

  • Devins, G. M. (1983). The emotional impact of end-stage renal disease: Importance of patients’ perceptions of intrusiveness and control. International Journal of Psychiatry in Medicine, 13, 327–343.

    Article  PubMed  Google Scholar 

  • Devins, G. M., Armstrong, S. J., Mandin, H., & Paul, L. C. (1990). Recurrent pain, illness intrusiveness, and quality of life in end-stage renal disease. Pain, 42, 279–285.

    Article  PubMed  CAS  Google Scholar 

  • Devins, G. M., Mandin, H., Hons, R. B., & Burgess, E. D. (1990). Illness intrusiveness and quality of life in end-stage renal disease: Comparison and stability across treatment modalities. Health Psychology, 9, 117–142.

    Article  PubMed  CAS  Google Scholar 

  • Elliott, T. R., Johnson, M. O., & Jackson, R. (1997). Social problem solving and health behaviors of undergraduate students. Journal of College Student Development, 38, 24–31.

    Google Scholar 

  • Flora, D. B., & Curran, P. J. (2004). An empirical evaluation of alternative methods of estimation for confirmatory factor analysis with ordinal data. Psychological Methods, 9, 466–491.

    Article  PubMed  Google Scholar 

  • Foddy, W. H. (1993). Constructing questions for interviews and questionnaires: Theory and practice in social research. New York, USA.

  • Fogarty, L., Roter, D., Larson, S., Burke, J., Gillespie, J., & Levy, R. (2002). Patient adherence to HIV medication regimens: a review of published and abstract reports [Review]. Patient Education & Counseling, 46, 93–108.

    Article  Google Scholar 

  • Grady, C., Anderson, R., & Chase, G. A. (1998). Fatigue in HIV-infected men receiving investigational interleukin-2. Nursing Research, 47, 227–234.

    Article  PubMed  CAS  Google Scholar 

  • Griffin, K. W., & Rabkin, J. G. (1997). Psychological distress in people with HIV/AIDS: Prevalence rates and methodological issues. AIDS & Behavior, 1, 29–42.

    Article  Google Scholar 

  • Groopman, J. E. (1998). Fatigue in cancer and HIV/AIDS. Oncology, 12, 335–344; discussion 345–336.

    PubMed  CAS  Google Scholar 

  • Horne, R., Weinman, J., & Hankins, M. (1999). The Beliefs about Medicines Questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health, 14, 1–24.

    Google Scholar 

  • Hu, L.-t., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.

    Google Scholar 

  • Johnson, M. O., Catz, S. L., Remien, R. H., Rotheram-Borus, M. J., Morin, S. F., Charlebois, E. D., et al. (2003). Theory guided, empirically supported avenues for intervention on HIV medication nonadherence: Findings from the Healthy Living Project. AIDS Patient Care STDS, 17, 645–656.

    Article  PubMed  Google Scholar 

  • Johnson, M. O., Charlebois, E., Morin, S. F., Catz, S. L., Goldstein, R. B., Remien, R. H., et al. (2005). Perceived Adverse Effects of Antiretroviral Therapy. Journal of Pain & Symptom Management, 29, 193–205.

    Article  Google Scholar 

  • Johnson, M. O., Chesney, M., Goldstein, R. B., Remien, R. H., Catz, S., Gore-Felton, C., et al. (2006). Positive provider interactions, adherence self-efficacy, and adherence to antiretroviral medications among HIV infected adults: A mediation model. AIDS Patient Care & STDS, 20, 258–268.

    Article  Google Scholar 

  • Johnson, M. O., Elliott, T. R., Neilands, T. B., Morin, S. F., & Chesney, M. A. (2006). A social problem solving model of adherence to HIV medications. Health Psychology, 25, 355–363.

    Article  PubMed  Google Scholar 

  • Johnson, M. O., & Folkman, S. (2004). Side effect and disease related symptom representations among HIV+ adults on antiretroviral therapy. Psychology, Health & Medicine, 9, 139–148.

    Article  Google Scholar 

  • Johnson, M. O., Stallworth, T., & Neilands, T. B. (2003). The drugs or the disease? Causal attributions of symptoms held by HIV positive adults on HAART. AIDS and Behavior, 7, 109–117.

    Article  PubMed  Google Scholar 

  • Johnson, S. C., & Gerber, J. G. (2000). Advances in HIV/AIDS therapy. Advances in Internal Medicine, 45, 1–40.

    PubMed  CAS  Google Scholar 

  • Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Pub. Co.

    Google Scholar 

  • Lorenz, K. A., Shapiro, M. F., Asch, S. M., Bozzette, S. A., & Hays, R. D. (2001). Associations of symptoms and health-related quality of life: findings from a national study of persons with HIV infection. Annals of Internal Medicine, 134, 854–860.

    PubMed  CAS  Google Scholar 

  • Maes, S., Leventhal, H., & de Ridder, D. T. D. (1996). Coping with chronic diseases. In E. Moshe Zeidner, E. Norman S. Endler, & et al. (Eds.), Handbook of coping: Theory, research, applications (pp. 221–251). New York, USA: John Wiley.

  • Millsap, R. E., & Yun-Tein, J. (2004). Assessing factorial invariance in ordered-categorical measures. Multivariate Behavioral Research, 39, 479–516.

    Article  Google Scholar 

  • Muthén, B., du Toit, S. H. C., & Spisic, D. (in press). Robust Inference using weighted least squares and quadratic estimating equations in latent variable modeling with categorical and continuous outcomes. Psychometrika.

  • Oyugi, J. H., Byakika-Tusiime, J., Charlebois, E. D., Kityo, C., Mugerwa, R., Mugyenyi, P., et al. (2004). Multiple validated measures of adherence indicate high levels of adherence to generic HIV antiretroviral therapy in a resource-limited setting. Journal of Acquired Immune Deficiency Syndromes, 36, 1100–1102.

    Article  PubMed  CAS  Google Scholar 

  • Raykov, T. (1997). Estimation of composite reliability for congeneric measures. Applied Psychological Measurement, 21, 173–184.

    Article  Google Scholar 

  • Raykov, T., & Shrout, P. E. (2002). Reliability of scales with general structure: Point and interval estimation using a structural equation modeling approach. Structural Equation Modeling, 9, 195–212.

    Article  Google Scholar 

  • Russell, D. W., & Cutrona, C. E. (1991). Social support, stress, and depressive symptoms among the elderly: Test of a process model. Psychology & Aging, 6, 190–210.

    Google Scholar 

  • Spector, P. E. (1992). Summated rating scale construction: An introduction. Newbury Park, CA, USA.

  • Stall, R., Hoff, C., Coates, T., Paul, J., Phillips, K., Ekstrand, M., et al. (1996). Decisions to get HIV tested and to accept antiretroviral therapies among gay/bisexual men: Implications for secondary prevention efforts. Journal of Acquired Immune Deficiency Syndromes, 11, 151–160.

    CAS  Google Scholar 

  • Stirratt, M. J., Remien, R. H., Smith, A., Copeland, O. Q., Dolezal, C., & Krieger, D. (2006). The role of HIV serostatus disclosure in antiretroviral adherence. AIDS & Behavior, 10, 483–493.

    Article  Google Scholar 

  • Treisman, G. J., & Kaplin, A. I. (2002). Neurologic and psychiatric complications of antiretroviral agents. AIDS, 16, 1201–1215.

    Article  PubMed  CAS  Google Scholar 

  • Volberding, P. A. (2003). HIV therapy in 2003: Consensus and controversy. AIDS, 17(Suppl 1) S4–S11.

    PubMed  Google Scholar 

  • Walsh, J. C., Mandalia, S., & Gazzard, B. G. (2002). Responses to a 1 month self-report on adherence to antiretroviral therapy are consistent with electronic data and virological treatment outcome. AIDS, 16, 269–277.

    Article  PubMed  Google Scholar 

  • Walsh, J. C., Pozniak, A. L., Nelson, M. R., Mandalia, S., & Gazzard, B. G. (2002). Virologic rebound on HAART in the context of low treatment adherence is associated with a low prevalence of antiretroviral drug resistance. Journal of Acquired Immune Deficiency Syndromes, 30, 278–287.

    PubMed  CAS  Google Scholar 

  • Watson, A., Samore, M. H., & Wanke, C. A. (1996). Diarrhea and quality of life in ambulatory HIV-infected patients. Digestive Diseases and Sciences, 41, 1794–1800.

    Article  PubMed  CAS  Google Scholar 

Download references

Acknowledgements

This research was funded by KO8MH001995 and R01MH068208 from the National Institutes of Health and grant # ID01SF020 from the Universitywide AIDS Research Program of California. The authors would like to thank the men and women who participated in the research and the interviewers and recruiters who worked on the projects. In particular, we thank Samantha Dilworth for her contributions to the data analyses.

Author information

Authors and Affiliations

  1. Center for AIDS Prevention Studies, Department of Medicine, University of California, San Francisco, 50 Beale Street, Suite 1300, San Francisco, CA, 94105, USA

    Mallory O. Johnson & Torsten B. Neilands

Authors
  1. Mallory O. Johnson
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Torsten B. Neilands
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Mallory O. Johnson.

Appendix: SECope Items

Appendix: SECope Items

Please think about any symptoms that you have experienced in the past 30 days that you believe are caused by your HIV medications. If you have experienced more than one side effect, please choose the one that is most important (that is: which is the most bothersome or disruptive).

Specify here:——————

Please think about a time recently when you were experiencing this side effect. There are many things that people do in order to deal with problems such as side effects from treatment. Please listen to the following list and choose the number that best describes how often you use each way of dealing with this side effect. Again, please think about this side effect each time I say side effect.

  1. 0

    Never

  2. 1

    Rarely

  3. 2

    Sometimes

  4. 3

    Often

  5. 4

    Very Often

When you experience this side effect, how often do you:

  1. 1.

    Remember that others have it worse than you do?

  2. 2.

    Decide that the medication is not worth the side effect and stop taking it?

  3. 3.

    Get support from other people?

  4. 4.

    Try to get more information about the medication or side effect?

  5. 5.

    Reduce the dose of the medication that is causing the side effect?

  6. 6.

    Remind yourself that the reason you are having this side effect is that you need the medications to stay healthy?

  7. 7.

    Talk to family, friends, loved ones about the problem?

  8. 8.

    Share your feelings and thoughts with others?

  9. 9.

    Take a break from the medication?

  10. 10.

    Take a medication that will make the side effect feel better or go away?

  11. 11.

    Take another medication to deal with the side effect?

  12. 12.

    Take less of the medication to see if the side effect is not so bad (smaller doses or less frequent)?

  13. 13.

    Talk to a counselor, therapist, or case manager?

  14. 14.

    Request a medication from your doctor to help the side effect?

  15. 15.

    Talk to your doctor or health care provider about the problem?

  16. 16.

    Think about good times in the past?

  17. 17.

    Try to find out as much as you can about the side effect and what is causing it?

  18. 18.

    Let others know what you are going through?

  19. 19.

    Try to have compassion for others who are suffering?

  20. 20.

    Try to keep your sense of humor?

Rights and permissions

Reprints and permissions

About this article

Cite this article

Johnson, M.O., Neilands, T.B. Coping with HIV Treatment Side Effects: Conceptualization, Measurement, and Linkages. AIDS Behav 11, 575–585 (2007). https://doi.org/10.1007/s10461-007-9229-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-007-9229-4

Keywords

Search

Navigation