Understanding the Management of Chronic Disease in Women Living with HIV/AIDS

Background

Self-management is a central health goal. Self-management is defined as the day to day decisions patients make to manage their illnesses. Several instruments have been created to assess self-management for specific diseases. However, these instruments have many limitations and have been unable to conceptualize the dynamic nature of self-management in individuals living with HIV. Without an appropriate measure of self-management, responsive to the individual’s priorities and context, we will never be able to accurately assess interventions to increase self-management. Therefore, the current research study had three aims:

  1. To understand self-management as practiced by women living with HIV/AIDS in the context of their lives;
  2. To describe the domains of self-management among women living with HIV/AIDS and draft and instrument to measure those domains; and
  3. To develop and validate a survey measuring self-management for women living with HIV/AIDS.

Research Design

Each aim had its own study design, as determined by the research question. The first aim was achieved with a descriptive qualitative study and we conducted 12 focus groups consisting of 6-8 participants per group. At each focus group the primary investigator asked the group semi-structured questions and allowed them to respond. The groups were digitally recorded and transcribed. The research team decided on a small group of generalizations that held true for the data and these themes were examined. A summer document of potential scale items was generated using data from each theme.

To address the second aim we conducted a descriptive qualitative study, one focus group (n = 7) of women living with HIV, one focus group with HIV experts (n=2), and one focus group of self-management experts (n=5) to assess the new self-management instrument. The instrument was revised using the feedback.

The research design to address the third aim is a cross-sectional, descriptive study. We recruited, obtained consent, and administered a packet of instruments, containing the new self-management instrument, to women living with HIV/AIDS (n=260). The completed, cleaned data set was analyzed to explore the validity and reliability of the Self-Management Instrument.

Participants

Participants were approximately 300 adult women who meet the following criteria prior to enrollment in the study: 1) Eighteen years or older; 2) Confirmed prior HIV+ serostatus; 3) Ability to provide informed consent; and 4) English speaking.

Results

A final scale was developed with 20 items covering three domains of HIV Self-Management (PDF).

Korean Translation

Kim, G. S., Chu, S. H., Park, Y., Choi, J. Y., Lee, J. I., Park, C. G., & McCreary, L. L. (2015). Psychometric Properties of the Korean Version of the HIV Self-Management Scale in Patients with HIV (PDF). Journal of Korean Academy of Nursing, 45(3), 439-448. ncbi.nlm.nih.gov/pubmed/26159145.

Research Team

Principal Investigator

  • Allison R. Webel, RN, PhD Frances Payne Bolton School of Nursing, Case Western Reserve University

Co-Investigators

  • Jennifer Okonsky, RN, PhD, University of California, San Francisco
  • Yvette Cuca, MPH, PhD, University of California, San Francisco
  • Alice Asher, RN, CNS, PhD(c), University of California, San Francisco
  • Chris Burant, PhD, Frances Payne Bolton School of Nursing, Case Western Reserve University
  • Alphoncina Kaihura, RN, University of California, San Francisco
  • Carol Dawson-Rose, PhD, RN, University of California, San Francisco
  • Roberta A Salata, MD, Case Western Reserve University School of Medicine

Research Publications

Webel, A.R. & Higgins, P. (2012) The relationship between social roles and self-management behavior in women living with HIV/AIDS. Women’s Health Issues. 22(1): e27-33. PMCID: PMC3206212 (PDF).

Webel, A.R., Dolansky, M., Henry, A. & Salata, R. (2012) A Qualitative Description of Women’s HIV Self-Management Techniques: Context, Strategies, And Considerations. Journal of the Association of Nurses in AIDS Care. 23(4): 281-93. PMCID: PMC3288777

Webel, AR., Asher, A., Cuca, Y., Okonsky, JO., Burant, C., Kaihura, A., Hanson, J., Dawson-Rose, C., & Salata, R. (2012) Measuring HIV Self-Management in Women Living with HIV/AIDS: A Psychometric Evaluation Study of the HIV Self-Management Scale. Journal of Acquired Immune Deficiency Syndrome. 60(3):e72-e81 PMCID: PMC3383929 (PDF)

Webel, AR., Cuca, Y., Okonsky, JG, Asher, AK., Kaihura, A & Salata, RA. (2013) The Impact of Social Context on Self-Management in Women Living with HIV. Social Science and Medicine. 87, 147-154 PMCID: PMC3656470

Okonsky, J. G., Webel, A., Dawson-Rose, C., Johnson, M., Asher, A., Cuca, Y., Kaihura, A., Hanson, J. & Portillo, C. J. (2014). Not Just Simply Forgetting: Appreciating Reasons for Non-adherence in Women by Adherence Level and Regimen. International Health Care for Women. 1-9.(In Press) PMID: 24654887

Cuca, Y.P., Asher, A., Okonsky, J., Kaihura, A., Dawson-Rose, C. and Webel, A. HIV stigma and social capital in women living with HIV. Journal of the Association of Nurses in AIDS Care. (In Press).

Research Presentations

2011. Webel, AR., Asher, A., Okonsky, JO., Cuca, Y., Kaihura, A., Hanson, J., Dawson-Rose, C., & Salata, R. Understanding the Management of Chronic Disease in Women Living with HIV/AIDS (WLHA):Development of the HIV Self-Management Scale (PDF). Association of Nurses in AIDS Care, Baltimore, MD. Poster P-22

2012. Cuca, Y., Webel, A.R., Asher, A, Kaihura, A Okonsky, JO& Dawson-Rose, C. The Relationship Between HIV Stigma Social Capital, and Marginalities in WLHIV (PDF). Center for AIDS Research Joint Symposium for HIV Research in Women, Providence, Rhode Island.

2012. Webel, AR., Cuca, Y., Okonsky, JO., Asher, A., Kaihura, A & Salata, R. The Impact of the Social Context on Self-Management in Women Living with HIV (PDF). Center for AIDS Research Joint Symposium for HIV Research in Women, Providence, Rhode Island.

2014. Kaihura, A.J., Waters, C.A., Dawson-Rose, C.; Kools, S.M., & Evers-Manly, S. Stigma and Quality of Life in African American Women Living with HIV Infection Through the Lens of Intersectionality (PDF). Sigma Theta Tau International Bay Area Conference. Poster Presentation.

Support

The development of the HIV Self-Management Scale was supported by funds from the National Institutes of Health (5 KL2 TR000440, 1UL1 RR024989, TL1 RR024129, T32 NR007081, & P30 NR010676) in the United States.