Research Studies and Findings

Study I: Predictors of Adherence in HIV/AIDS
PI: William L. Holzemer, RN, PhD

Summary: Study 1 showed that people who reported more symptoms of HIV and AIDS reported symptoms that were more intense—especially depression—were less adherent to their HIV medication regimens. In addition, they were less likely to follow advice from their providers and missed a greater number of medical appointments. In contrast, individuals who reported greater positive feelings and more engagement with their HIV health care providers reported greater adherence to their HIV medication regimens.
Dates: 1998-2002
Main results:
Holzemer, W. L., Corless, I. B., Nokes, K. M., Turner, J. G., Brown, M. A., Powell-Cope, G. M., Inouye, J., Henry, S. B., Nicholas, P. K., & Portillo, C. J. (1999). Predictors of self-reported adherence in persons living with HIV disease. AIDS Patient Care & STDs, 13(3), 185-197.

Study II: Symptom Management for Persons with HIV Disease
PI: William L. Holzemer, RN, PhD

Summary: This qualitative study investigated self-care strategies that individuals use to manage their HIV symptoms, including using various medications, comforting themselves, using complementary therapies, engaging in diverse daily activities and thoughts, changing their diet, seeking help from others, turning to spirituality, and increasing exercise Kirksey et al., 2002; Nicholas et al., 2002). Study participants rated each self-care strategy, and results showed that effectiveness varied by symptom: 71% for symptoms of fatigue, 78% for symptoms of neuropathy, and 92% for symptoms of depression.
Dates: 2001-2005
Main results:
-Chou, F. Y., Holzemer, W. L., Portillo, C. J. & Slaughter, R. (2004). Self Care strategies and sources of information for HIV/AIDS symptom management. Nursing Research, 53(5), 332-339.
-Corless, I. B., Bunch, E. H., Kemppainen, J. K., Holzemer, W. L., Nokes, K.M., Eller, L. S., Portillo, C. J., Butensky, E., Nicholas, P. K., Bain, C. A., Davis, S., Kirksey, K. M., & Chou, F. Y. (2002). Self-care for fatigue in HIV disease. Oncology Nursing Forum, 29(5), E60-E69.
-Kirksey, K. M., Goodroad, B. K., Kemppainen, J. K., Holzemer, W. L., Bunch, E. H., Corless, I. B., Eller, L. S., Nicholas, P. K., Nokes, K. & Bain, C. (2002). Complementary therapy use in persons with HIV/ AIDS. Journal of Holistic Nursing, 20(3), 264-278.

Study III: Self-care Symptom Management in HIV/AIDS
PI: William L. Holzemer, RN, PhD

Summary: This study showed that, among racial and ethnic minority individuals living with HIV, constructs of illness representation (illness representation, the person, selfcare of symptoms, effectiveness of self-care strategies, medication adherence, and appraisal of outcomes) only explained 23% of variance in life satisfaction. Racial and ethnic minorities were also significantly more likely to use prayer as a complementary health strategy for HIV/ AIDS.
Dates: 2004-2008
Main results:
-Portillo, C. J., Rivero Mendez, M., Holzemer, W. L., Corless, I. B., ´ Nicholas, P. K., Coleman, C., Dole, P., Eller, L. S., Hamilton, M. J., Kemppainen, J. K., Kirksey, K., Nokes, K. M., Reynolds, N., Wantland, D. J., Sefcik, E. F., Bunch, E. H. & Canaval, G. E. (2005). Quality of life of ethnic minority persons living with HIV/AIDS.Journal of Multicultural Nursing & Health, 11(1), 31.
-Reynolds, N. R., Sanzero Eller, L., Nicholas, P. K., Corless, I. B., Kirksey, K., Hamilton, M. J., Kemppainen, J. K., Bunch, E., Dole, P., Wantland, D., Sefcik, E., Nokes, K. M., Coleman, C. L., Rivero, M.,Canaval, G. E., Tsai, Y. F., & Holzemer, W. L. (2009). HIV illness representation as a predictor of self-care management and health outcomes: A multi-site, cross-cultural study. AIDS and Behavior, 13(2), 258-267.

Study IV: The Efficacy of the HIV/AIDS Symptom Management Manual
PI: William L. Holzemer, RN, PhD

Summary: Using a clinical trial research design, Study IV demonstrated that people using a self care symptom management manual for HIV and AIDS experienced a larger decrease in the frequency and intensity of symptoms compared with those using a nutrition manual. In addition, participants rated the symptom manual as more useful than the nutrition manual and used it more often.
Dates: 2007-2010
Main results:
-Wantland, D. J., Holzemer, W. L., Moezzi, S., Willard, S. S., Arudo, J., Kirksey, K.M., Portillo, C. J., Corless, I. B., Rosa, M. E., Robinson, L. L., Nicholas, P. K., Hamilton, M. J., Sefcik, E. F., Human, S., Rivero, M., Maryland, M., & Huang, E. (2008). A randomized controlled trial testing the efficacy of an HIV/AIDS symptom management manual. Journal of Pain and Symptom Management, 36(3), 235-246

Study V:  Exploring the Role of Self-Compassion, Self-Efficacy and Self-Esteem for HIV-Positive Individuals Managing Their HIV
PI: Carol Dawson Rose, PhD, RN

Summary: Study V was a large, multisite cross sectional study that found that people living with HIV (PLWH) with more self-compassion reported less risky sexual behavior, even when using illicit drugs. In addition, self-compassion among PLWH was related to HIV self-management, and there was a moderate relationship between social capital and self-reported psychological and physical health .
Dates: 2011-2015
Main results:
-    Dawson Rose, C., Webel, A., Sullivan, K., Cuca, Y., Wantland, D., Johnson, M.O., Brion, J., Portillo, C., Corless, I., Voss, J., Chen, W-T., Phillips, J.C., Tyer-Viola, L., Rivero-Mendez, M., Nicholas, P., Nokes, K., Kemppainen, J., Sefcik, E., Eller, L., Iipinge, S., Kirksey, K., Chaiphibalsarisdi, P., Davila, N., Hamilton, M.J., Hickey, D., Maryland, M., Reid, P., and Holzemer, W.L. Self-compassion and risk behavior among people living with HIV/AIDS. Research in Nursing and Health, 37(2):98-106. DOI: 10.1002/nur.21587. PMCID: PMC4158433.
-    Kemppainen, J., Brion, J., Leary, M., Wantland, D.,  Sullivan, K., Nokes, K., Bain, C., Chaiphibalsarisdi, P., Chen, W.T., Holzemer, W.L., Eller, L.S., Iipinge, S., Johnson, M.O., Portillo, C., Voss, J., Tyer-Viola, L., Corless, I.B., Nicholas, P.K., Dawson Rose, C., Phillips, J.C., Sefcik, E., Rivero-Mendez, M., & Kirksey, K. (2013). Use of a brief version of the Self-Compassion Inventory with an international sample of people with HIV/AIDS. AIDS Care. 25(12):1513-9. DOI:10.1080/09540121.2013.780119. PMCID: PMC3796174.

Study VI:  Health Literacy: People Living with HIV, Health Care Providers, and Professional Care Team Members
PI: Carol Dawson-Rose, PhD, RN and Carmen Portillo PhD, RN

Summary: Multiple factors contribute to individuals and communities receiving equitable care for HIV. Health literacy, which can be described as the degree to which people are able to access, process, and understand health-related information is important for equitable care. Beyond understanding health information, the interactions between PLHIV and their clinicians and among PLHIV may contribute to unequal quality of HIV care. This study reports on one priority that PLHIV reported was important to them in the provision of their HIV care and that is building trust. Focus group discussions were conducted with PLHIV (N=120); 52% women and 50% Black from 8 sites in the U.S., and Botswana, between June 2013 and February 2014. Individuals were recruited from HIV/AIDS clinics and service organizations, and were asked questions related to how and where they learn about HIV. Focus group sessions were audio taped and transcribed.Transcripts were then coded and thematic analysis was used to reduce the data.
Dates: 2014-2017
Main results:
Dawson Rose, C., Cuca, Y.P., Webel, A.R., Solís Báez, S., Holzemer, W.L., Rivero Mendez, M., Sanzero Eller, L., Reid, P., Johnson, M.O., Kempainnen, J.K., Reyes, D., Nokes, K.M., Nicholas, P.K., Matshediso, E., Mogobe, D., Sabone, M., Ntsayagae, E., Shaibu, S., Corless, I.B., Wantland, D.J., Lindgren, T. (2016). Building trust and relationships between patients and providers: An essential complement to health literacy in HIV care. JANAC. S1055-3290(16)30001-2. doi: 10.1016/j.jana.2016.03.001.

Keitshokile Dintle Mogobe, Sheila Shaibu, Ellah Matshediso, Motshedisi B. Sabone, Esther Ntsayagae, Patrice K. Nicholas, Carmen J. Portillo, Inge B. Corless, Carol Dawson-Rose, Mallory O. Johnson, Allison Webel, Yvette Cuca, Marta Rivero-Mendez, Solymar Solis Baez, Kathleen M. Nokes, Darcel Reyes, J. K. Kemppainen, Paula Reid, Lucille Eller, Teri Lindgren, William L. Holzemer, and Dean Wantland. (2016). Language and Culture in Health Literacy for People Living With HIV: Perspectives of Health Care Providers and Professional Care Team Members. AIDS Research and Treatment.2016, Article ID 5015707, 10 pages, 2016. doi:10.1155/2016/5015707.

Study VII:An Ecological Understanding of Physical Activity Patterns of Adults Living with HIV Throughout the Lifespan
PI: Allison Webel, PhD, RN

Summary: People living with HIV (PLHIV), in all settings, are at increased risk for developing cardiovascular disease (CVD). Cardiorespiratory fitness is the best indicator of CVD-related morbidity and mortality but is poorly understood in PLHIV. Physical activity improves cardiorespiratory fitness and reduces CVD, but physical activity is low in this population. Our objective was to describe physical activity and cardiorespiratory fitness by age and sex and to examine the association between physical activity and cardiorespiratory fitness in PLHIV. Seven-hundred and two PLHIV participated in a cross-sectional study and completed the following validated measures of self-reported physical activity (7-day physical activity recall & leisure time exercise questionnaire) and cardiorespiratory fitness (6-minute walk test. Clinical data were abstracted from participants’ medical chart. Subjects were recruited from seven geographically diverse sites in the United States and Thailand.
Dates: 2016-2018
Main results:
Webel, A.R., Perazzo, J., Phillips, J.C., Nokes, K.M., Rentrope, C., Schnall, R., Musanti, R., Tufts, K.A., Sefcik, E., Hamilton, M.J. and Portillo, C., 2019. The Relationship Between Physical Activity and Cardiorespiratory Fitness Among People Living With Human Immunodeficiency Virus Throughout the Life Span. Journal of Cardiovascular Nursing, 34(5), pp.364-371.

Wang, T., Voss, J. G., Perazzo, J., Phillips, J. C., Musanti, R., Orton, P., Hamilton, M. J., Chaiphibalsarisdi, P., Schnall, R., Dawson-Rose, C., Nokes, K. M., Tufts, K. A., Portillo, C., Sefcik, E., & Webel, A. R. (2021). Working status and seasonal meteorological conditions predict physical activity levels in people living with HIV. AIDS Care. DOI: 10.1080/09540121.2021.198121

Study VIII: The Impact of the COVID-19 Pandemic on People Living with HIV
PI: Carol Dawson-Rose, PhD, RN and Yvette Cuca, PhD, MPH

Summary: The Network is currently developing a protocol to explore the effect of the COVID-19 pandemic on PLWH. Data will be collected from participants both online and in person. Recruitment began in late 2021.
Dates: 2021- current
Main results: The study is currently ongoing.

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