Self-Care for Fatigue in Patients With HIV

Inge B. Corless

Eli Haugen Bunch

Jeanne K. Kemppainen

William L. Holzemer

Kathleen M. Nokes

Lucille Sanzero Eller

Carmen J. Portillo

Ellen Butensky

Patrice K. Nicholas

Catherine A. Bain

Sheila Davis

Kenn M. Kirksey

Fang-yu Chou

ONF 2002, 29(5), E60-E69. DOI: 10.1188/02.ONF.E60-E69

Purpose/Objectives: To identify when fatigue is reported as a problem by people who are HIV positive, what the perception of fatigue is, and which self-care behaviors are used and with what efficacy.

Design: Multisite descriptive study.

Setting: University-based AIDS clinics, community-based organizations, and homecare agencies located in cities across the United States, in Norway, and through a university Web site.

Sample: Convenience sample of 422 self-identified people who are HIV positive.

Main Research Variables: Symptom description, symptom relief, symptom help, and self-care strategies.

Findings: The sixth most reported symptom in this study, fatigue, was treated with a variety of self-designed strategies. In only three instances was consultation with a healthcare provider (i.e., physician) or an injection (medication not defined) mentioned. The most frequently used interventions were supplements, vitamins, and nutrition followed by sleep and rest; exercise; adjusting activities, approaches, and thoughts; distraction; and complementary and alternative therapies. In addition to self-designed strategies, the media and friends and family were sources of information.

Conclusions: Fatigue was reported less frequently in this study than in other HIV-, AIDS-, or cancer-related studies. This may be an artifact of the study design. The use of informal networks for assistance, let alone the prevalence of unrelieved fatigue, indicates the need for more attention to this problem among people with AIDS.

Implications for Nursing: Careful assessment of the pattern of fatigue and its onset, duration, intervention, and resolution is required if the varied types of fatigue are to be identified and treated successfully.

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    Adinolfi, A. (2001a). Assessment and treatment of HIV-related fatigue. Journal of the Association of Nurses in AIDS Care, 12(Suppl.), 29-34.

    Adinolfi, A. (2001b). The need for national guidelines to manage fatigue in HIV-positive patients. Journal of the Association of Nurses in AIDS Care, 12(Suppl.), 39-42.

    Aistars, J. (1987). Fatigue in the cancer patient: A conceptual approach to a clinical problem. Oncology Nursing Forum, 14(6), 25-30.

    Barroso, J. (1999). A review of fatigue in people with HIV infection. Journal of the Association of Nurses in AIDS Care, 10(5), 42-49.

    Berger, A.M. (1998). Patterns of fatigue and activity and rest during adjuvant breast cancer chemotherapy. Oncology Nursing Forum, 25, 51-62.

    Blesch, K.S., Paice, J.A., Wickham, R., Harte, N., Schnoor, O.K., Purl, S., et al. (1991). Correlates of fatigue in people with breast or lung cancer. Oncology Nursing Forum, 18, 81-87.

    Bormann, J., Shively, M., Smith, T.L., & Gifford, A.L. (2001). Measurement of fatigue in HIV-positive patients: Reliability and validity of the Global Fatigue Index. Journal of the Association of Nurses in AIDS Care, 12(3), 75-83.

    Bower, J.E., Ganz, P.A., Desmond, K.A., Rowland, J.H., Meyerowitz, B.E., & Belin, T.R. (2000). Fatigue in breast cancer survivors: Occurrence, correlates, and impact on quality of life. Journal of Clinical Oncology, 18, 743-753.

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

    Breitbart, W., Rosenfeld, B., Kaim, M., & Funesti-Esch, J. (2001). A randomized, double-blind, placebo-controlled trial of psychostimulants for the treatment of fatigue in ambulatory patients with human immunodeficiency virus disease. Archives of Internal Medicine, 161, 411-420.

    Burrows, M., Dibble, S.L., & Miaskowski, C. (1998). Differences in outcomes among patients experiencing different types of cancer-related pain. Oncology Nursing Forum, 25, 735-741.

    Capaldini, L. (1998a, March 20). Fatigue and HIV: Interview with Lisa Capaldini, M.D. Interview by John S. James. AIDS Treatment News, 291, 1-6.

    Capaldini, L. (1998b, April 13). Fatigue and HIV: Interview with Lisa Capaldini, M.D. Part II. Interview by John S. James. AIDS Treatment News, 292, 2-6.

    Carlson, R.H. (2001). There is more to fatigue than anemia. Oncology Times, 23(1), 22-25.

    Cleary, P.D., Fowler, F.J., Weissman, J., Massagli, M.P., Wilson, I., Seage, G.R., et al. (1993). Health-related quality of life in persons with acquired immunodeficiency syndrome. Medical Care, 32, 569-580.

    Cosby, C., Holzemer, W.L., Henry, S.B., & Portillo, C.J. (2000). Hemato-logical complications and quality of life in hospitalized AIDS patients. AIDS Patient Care and STDs, 14, 269-279.

    Curt, G. A. (2000). The impact of fatigue on patients with cancer: Overview of fatigue 1 and 2. Oncologist, 5(Suppl. 2), 9-12.

    Curt, G.A., Breitbart, W., Cella, D., Groopman, J.E., Horning, S.J., Itri, L.M., et al. (2000). Impact of cancer-related fatigue on the lives of patients: New findings from the fatigue coalition. Oncologist, 5, 353-360.

    Darko, D.F., McCutchan, J.A., Kripke, D.F., Gillin, J.C., & Golshan, S. (1992). Fatigue, sleep disturbance, disability, and indices of progression of HIV infection. American Journal of Psychiatry, 149, 514-520.

    Darko, D.F., Miller, M.M., & Miller, J.C. (1998). Growth hormone, fatigue, poor sleep, and disability in HIV infection. Neuroendocrinology, 67, 317-324.

    Dimeo, F., Rumberger, E.G., & Keul, J. (1998). Aerobic exercise as therapy for cancer fatigue. Medicine and Science in Sport and Exercise, 30, 475-478.

    Doob, P.R., & MacFadden, O.K., (1992). The impact of peptide T on HIV-related fatigue and health-related quality of life [Abstract]. International Conference on AIDS, 8(3), 73.

    Ferrando, S., Evans, S., Goggin, K., Sewell, M., Fishman, B., & Rabkin, J. (1998). Fatigue in HIV illness: Relationship to depression, physical limitations, and disability. Psychosomatic Medicine, 60, 759-764.

    Ferrell, B.R., Grant, M., Dean, G.E., Funk, B., & Ly, J. (1996). "Bone tired": The experience of fatigue and its impact on quality of life. Oncology Nursing Forum, 23, 1539-1547.

    Ferrell, B.R., Grant, M., Funk, B.M., Otis-Green, S.A., & Garcia, N.J. (1998). Quality of life in breast cancer survivors: Implications for developing support services. Oncology Nursing Forum, 25, 887-895.

    Fighting fatigue requires battle on many fronts. (1996). AIDS Alert, 11(10 Suppl.), 1-2.

    Foltz, A.T., Games, G., & Gullatte, M. (1996). Recalled side effects and self-care actions of patients receiving inpatient chemotherapy. Oncology Nursing Forum, 23, 679-683.

    Fontaine, A., Larue, F., & Lassauniere, J.M. (1999). Physicians' recognition of the symptoms experienced by HIV patients: How reliable? Journal of Pain and Symptom Management, 18, 263-270.

    Fuhrer, R., & Wessely, S. (1995). The epidemiology of fatigue and depression: A French primary-care study. Psychological Medicine, 25, 895-905.

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

    Grohar-Murray, M.E., Becker, A., Reilly, S., & Ricci, M. (1998). Self-care actions to fatigue among myasthenia gravis patients. Journal of Neuro-science Nursing, 30, 191-199.

    Groopman, J.E. (1998). Fatigue in cancer and HIV/AIDS. Oncology, 12, 335-344.

    Harpham, W.S. (1999). Resolving the frustration of fatigue. CA: A Cancer Journal for Clinicians, 49, 178-189.

    Hays, R.B., Turner, H., & Coates, T.J. (1992). Social support, AIDS-related symptoms, and depression among gay men. Journal of Consulting and Clinical Psychology, 60, 463-469.

    Hoskins, C.N. (1997). Breast cancer treatment-related patterns in side effects, psychological distress, and perceived health status. Oncology Nursing Forum, 24, 1575-1583.

    Irvine, D.M., Vincent, L., Graydon, J.E., & Bubela, N. (1998). Fatigue in women with breast cancer receiving radiation therapy. Cancer Nursing, 21, 127-135.

    Kaasa, S., Loge, J.H., Knobel, H., Jordhoy, M.S., & Brenne, E. (1999). Fatigue measures and relation to pain. Acta Anaesthesiologica Scandinavica, 43, 939-947.

    Kuuppelomaki, M., & Lauri, S. (1998). Cancer patients' reported experiences of suffering. Cancer Nursing, 21, 364-369.

    Lee, K.A., Hicks, G., & Nino-Murcia, G. (1991). Validity and reliability of a scale to assess fatigue. Psychiatry Research, 36, 291-298.

    Lee, K.A., Portillo, C.J., & Miramontes, H. (1999). The fatigue experience for women with human immunodeficiency virus. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 28, 193-200.

    Lee, K.A., Portillo, C.J., & Miramontes, H. (2001). The influence of sleep and activity patterns on fatigue in women with HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 12(Suppl.), 19-27.

    Longman, A.J., Braden, C.J., & Mishel, M.H. (1997). Pattern of association over time of side-effects burden, self-help, and self-care in women with breast cancer. Oncology Nursing Forum, 24, 1555-1560.

    Magnusson, K., Moller, A., Ekman, T., & Wallgren, A. (1999). A qualitative study to explore the experience of fatigue in cancer patients. European Journal of Cancer Care, 8, 224-232.

    McDonnell, K.A., Gielen, A.C., O'Campo, P., & Burke, J.G. (1999, August). Using a quality of life measure to capture areas of unmet need among HIV-positive and HIV-negative women [Abstract 478]. Presented at the meeting of the National HIV Prevention Conference, Atlanta, GA.

    Messias, D.A.H., Yeager, K.A., Dibble, S.L., & Dodd, M.J. (1997). Patients' perspectives of fatigue while undergoing chemotherapy. Oncology Nursing Forum, 24, 43-48.

    Miller, R.G., Carson, P.J., Moussavi, R.S., Green, A.T., Baker, A.J., & Weiner, M.W. (1991). Fatigue and myalgia in AIDS patients. Neurology, 41, 1603-1607.

    Mock, V., Burke, M.B., Sheehan, P., Creaton, E.M., Winningham, M.L., McKenney-Tedder, S., et al. (1994). A nursing rehabilitation program for women with breast cancer receiving adjuvant chemotherapy. Oncology Nursing Forum, 21, 899-907.

    Mock, V., Dow, K., Meares, C.J., Grimm, P.M., Dienemann, J.A., Haisfield-Wolfe, M.E., et al. (1997). Effect of exercise on fatigue, physical functioning, and emotional distress during radiation therapy for breast cancer. Oncology Nursing Forum, 24, 991-1000.

    A model of symptom management. University of California, San Francisco School of Nursing Symptom Management Faculty Group. (1994). Image: Journal of Nursing Scholarship, 26, 272-281.

    More awareness needed in treatment of fatigue. (1996). AIDS Alert, 11(10), 115-117.

    Nail, L.M., Jones, L.S., Greene, D., Schipper, D.L., & Jensen, R. (1991). Use and perceived efficacy of self-care activities in patients receiving chemotherapy. Oncology Nursing Forum, 18, 883-887.

    O'Dell, M.W., Meighen, M., & Riggs, M.V. (1996). Correlates of fatigue in HIV infection prior to AIDS: A pilot study. Disability and Rehabilitation, 18, 249-254.

    Perkins, D.O., Leserman, J., Stern, R.A., Baum, S.F., Liao, D., Golden, R.N., et al. (1995). Somatic symptoms and HIV infection: Relationship to depressive symptoms and indicators of HIV disease. American Journal of Psychiatry, 152, 1776-1781.

    Piper, B.F., Dibble, S.L., Dodd, M.J., Weiss, M.C., Slaughter, R.E., & Paul, S.M. (1998). The revised Piper Fatigue Scale: Psychometric evaluation in women with breast cancer. Oncology Nursing Forum, 25, 677-684.

    Piper, B.F., Lindsey, A.M., & Dodd, M.J. (1987). Fatigue mechanisms in cancer patients: Developing a nursing theory. Oncology Nursing Forum, 14(6), 17-23.

    Piper, B.F., Rieger, P.T., Brophy, L., Haeuber, D., Hood, L.E., Lyver, A., et al. (1989). Recent advances in the management of biotherapy-related side effects: Fatigue. Oncology Nursing Forum, 16(6 Suppl.), 27-34.

    Ream, E., & Richardson, A. (1999). From theory to practice: Designing interventions to reduce fatigue in patients with cancer. Oncology Nursing Forum, 26, 1295-1303.

    Reillo, M., & Myers, R.A. (1992). HIV-related fatigue and hyperbaric oxygen therapy [Abstract]. International Conference on AIDS, 8(3), 126.

    Reillo, M.R. (1993). Hyperbaric oxygen therapy for the treatment of debilitating fatigue associated with HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 4(3), 33-38.

    Reilly, C.A., Holzemer, W.L., Henry, S.B., Slaughter, R.E., & Portillo, C.J. (1997). A comparison of patient and nurse ratings of human immunodeficiency virus-related signs and symptoms. Nursing Research, 46, 318-323.

    Richardson, A., Ream, E., & Wilson-Barnett, J. (1998). Fatigue in patients receiving chemotherapy: Patterns of change. Cancer Nursing, 21, 17-30.

    Rose, L., Pugh, L.C., Lears, K., & Gordon, D.L. (1998). The fatigue experience: Persons with HIV infection. Journal of Advanced Nursing, 28, 295-304.

    Sarna, L. (1998). Effectiveness of structured nursing assessment of symptom distress in advanced lung cancer. Oncology Nursing Forum, 25, 1041-1048.

    Schwartz, A.L. (1998a). Patterns of exercise and fatigue in physically active cancer survivors. Oncology Nursing Forum, 25, 485-491.

    Schwartz, A.L. (1998b). The Schwartz Cancer Fatigue Scale: Testing reliability and validity. Oncology Nursing Forum, 25, 711-717.

    Simon, A.M., & Zittoun, R. (1999). Fatigue in cancer patients. Current Opinion in Oncology, 11, 244-249.

    Skalla, K.A., & Lacasse, C. (1992). Patient education for fatigue. Oncology Nursing Forum, 19, 1537-1541.

    Stemhart, C.R., Montoya, I., & Kaiser, M.R. (1994). The effect of hyperbaric oxygenation (HBO) on HIV-associated chronic fatigue [Abstract]. International Conference on AIDS, 10(2), 220.

    Stewart, D., Abbey, S., Meana, M., & Boydell, K.M. (1998). What makes women tired? A community sample. Journal of Women's Health, 7(10), 69-76.

    Stone, P., Richards, M., A'Hern, R., & Hardy, J. (2000). A study to investigate the prevalence, severity, and correlates of fatigue among patients with cancer in comparison with a control group of volunteers without cancer. Annals of Oncology, 11, 561-567.

    Stone, P., Richards, M., Ream, E., Smith, A.G., Kerr, D.J., & Kearney, N. (2000). Cancer-related fatigue: Inevitable, unimportant, and untreatable? Results of a multi-centre patient survey. Annals of Oncology, 11, 871-975.

    Stuifbergen, A.K., & Rogers, S. (1997). The experience of fatigue and strategies of self-care among persons with multiple sclerosis. Applied Nursing Research, 10(1), 2-10.

    Testosterone therapy can improve mood, energy. (1999). AIDS Alert, 14(2), 18-20.

    van Mens-Verhulst, J., van Dijkum, C., Lam, N., & van Kuijk, E. (1999). Dealing with fatigue: The importance of health-related action patterns. Patient Education and Counseling, 36(1), 65-74.

    van Servellen, G., Sarna, L., & Jablonski, K.J. (1998). Women with HIV: Living with symptoms. Western Journal of Nursing Research, 20, 448-464.

    Vogl, D., Rosenfeld, B., Breitbart, W., Thaler, H., Passik, S., McDonald, M., et al. (1999). Symptom prevalence, characteristics, and distress in AIDS outpatients. Journal of Pain and Symptom Management, 18, 253-262.

    Wagner, G.J., Rabkin, J.G., & Rabkin, R. (1998). Testosterone as a treatment for fatigue in HIV+ men. General Hospital Psychiatry, 20, 209-213.

    Wagner, G.J., & Rabkin, R. (2000). Effects of dextroamphetamine on depression and fatigue in men with HIV: A double-blind, placebo-controlled trial. Journal of Clinical Psychiatry, 61, 436-440.

    Walker, B.L., Nail, L.M., Larsen, L., Magill, J., & Schwartz, A. (1996). Concerns, affect, and cognitive disruption following completion of radiation treatment for localized breast or prostrate cancer. Oncology Nursing Forum, 23, 1181-1187.

    Walker, K., McGowan, A., Jantos, M., & Anson, J. (1997). Fatigue, depression, and quality of life in HIV-positive men. Journal of Psychosocial Nursing and Mental Health Services, 35(9), 32-40.

    Winningham, M.L., Nail, L.M., Burke, M.B., Brophy, L., Cimprich, B., Jones, L.S., et al. (1994). Fatigue and the cancer experience: The state of the knowledge. Oncology Nursing Forum, 21, 23-36.

    Woo, B., Dibble, S.L., Piper, B.F., Keating, S.B., & Weiss, M.C. (1998). Differences in fatigue by treatment methods in women with breast cancer. Oncology Nursing Forum, 25, 915-920.

    Wyatt, G.K., & Friedman, L.L. (1998). Physical and psychosocial outcomes of midlife and older women following surgery and adjuvant therapy for breast cancer. Oncology Nursing Forum, 25, 761-768.

    Yarbro, C.H. (1996). Interventions for fatigue. European Journal of Cancer Care, 5(2 Suppl.), 35-38.