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AIDS
Vol. 23 No. 4 April 2002
Journal of Pain and Symptom Management
301
Original Article
Symptom Management in Taiwanese Patients with HIV/AIDS Yun-Fang Tsai, RN, PhD, Ping-Chuan Hsiung, RN, PhD, and William L. Holzemer, RN, PhD, FAAN School of Nursing (Y.-F.T.), Chang Gung University and Department of Nursing (P.-C.H.), National Taiwan University, Taiwan, Republic of China; and Department of Community Health Systems (W.L.H.), University of California at San Francisco, San Francisco, California, USA
Abstract The purpose of this study was to explore HIV/AIDS patients’ symptom experiences and selfcare symptom management strategies using a semi-structured questionnaire. Concurrently, the investigators gathered information about patients’ symptom management strategies from healthcare providers. A total of 134 HIV-infected persons and 31 healthcare providers voluntarily participated in this study. Nausea, pain, anxiety, vomiting, diarrhea, fear and lack of appetite were described frequently by HIV-infected participants. Nausea, anxiety, diarrhea, fever, fear, pain and vomiting were observed frequently by healthcare providers. The management strategies used by these patients are presented and the differences in findings between Taiwan and Western cultures are discussed. In general, the results indicated that healthcare providers hold limited knowledge about self-care symptom management of HIV/ AIDS. Filling this knowledge gap is an essential task for all healthcare providers in Taiwan. J Pain Symptom Manage 2002;23:301–309. © U.S. Cancer Pain Relief Committee, 2002. Key Words Symptoms, HIV/AIDS, Taiwan, self-care
Introduction The development of highly-active anti-retroviral therapies (HAART) has increased the life expectancy of persons who are human immunodeficiency virus (HIV) positive and have acquired immunodeficiency syndrome (AIDS). As a result, AIDS is gradually being seen as a chronic disease in countries that have access to HAART. HIV-infected patients experience many
Address reprint requests to: Yun-Fang Tsai, RN, PhD, School of Nursing, Chang Gung University, 259 Wen-Hwa 1st Road, Kwei-Shan, Tao-Yuan, 333, Taiwan, Republic of China. Accepted for publication: July 9, 2001. © U.S. Cancer Pain Relief Committee, 2002 Published by Elsevier, New York, New York
symptoms that are related to opportunistic infections and malignancies, and to the side effects from prophylactic and therapeutic interventions. Helping patients to reduce the interference caused by symptoms and maintain a quality of life is a challenge for all healthcare providers. Effective symptom management can help HIV-infected patients to prevent, assess and treat their symptoms. Many studies have suggested that patient self-report is the “gold standard” for understanding the symptom experience. The purpose of this study was to understand this symptom experience and the self-care management approaches used by HIV-infected persons. Information about symptom manage0885-3924/02/$–see front matter PII S0885-3924(01)00413-4
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ment strategies provided by healthcare providers were also collected.
Literature Review Symptoms occur at all stages of HIV infection. Fantoni et al. surveyed 1,128 HIV-infected ambulatory patients and found that their most frequent symptoms were fatigue (65%), anorexia (34%), cough (32%), pain (29%) and fever (29%).1 Rosenfeld and his colleagues reported that the average number of symptom among 504 ambulatory patients with AIDS was 16.7 (SD7.3).2 The most prevalent symptoms were worrying (86%), fatigue (85%), sadness (82%), and pain (76%). Reilly et al. also found that the average number of symptom among 207 patients with AIDS was 16.3 More than 50% of them reported shortness of breath, fatigue, cough, weakness, dry mouth, insomnia, lack of appetite, weight loss, and headaches. The most severe problems were fatigue, weakness, shortness of breath during activities and dry mouth. In addition, some studies have found that the prevalence of psychiatric illness, particularly depression, anxiety and substance abuse, is higher among HIV-infected patients than others.4–5 In Taiwan, one study6 found that HIV/AIDS patients reported an average of 12 physical symptoms (SD6.49). Among them, fatigue, weaknesses, shortness of breath with activity, dry mouth and thirst were the most frequent and severe. Insomnia and depression were the most frequent and severe types of psychological distress experienced by patients. In Taiwan or elsewhere, it is clear that most patients experience more than one symptom. Several studies have pointed out that symptoms could influence HIV/AIDS patients’ quality of life.7–10 The relationships between symptoms and quality of life were demonstrated before and after the use of HAART. Although studies have used various ways to measure symptoms and quality of life, the findings are consistent, i.e. quality of life decreases as the severity of the HIV/AIDS symptom increases. The meaning of living with this symptom experience can only be captured from the patient’s perspective.11–17 Because of the relationship between symptom distress and quality of life, effective symptom management becomes a very important issue for improving patients’ quality of life. Researchers have pointed out that nurses have a significant role in the detection and manage-
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ment of symptoms.18–19 However, nurses tended to underestimate the severity and frequency of symptoms.3, 20 Physicians also poorly recognize the symptoms experienced by HIV patients.21 Wilson and Cleary22 defined a symptom as a patient’s perception of an abnormal physical, emotional, or cognitive state. Hegyvery23 defined symptoms as the perceived indicators of change in normal functioning, as experienced by patients. After working with the concept of symptom for an extended period, the University of California San Francisco School of Nursing Symptom Management Faculty Group24 defined symptoms as subjective experiences reflecting changes in a person’s biopsychosocial function, sensation or cognition. The latter model acknowledged the relationship between signs (detectable by another person and sometimes the patient) and symptoms, noting that both signs and symptoms bring the attention of a patient and healthcare provider to a problem. The model included three interrelated dimensions: (a) symptom experience; (b) symptom management strategies provided by patient, family, healthcare providers and the healthcare system; and (c) symptom outcomes. The focus of this paper is on the first dimension, symptom experience, and the second dimension, symptom management. Since the mid-1980s, Taiwan has seen a dramatic increase in the number of people diagnosed with HIV, from 9 people in 1984 to 2755 in September 2000. Of those diagnosed, 34.9% have developed AIDS and 92.1% were male.25 Patients with HIV infection are able to receive their medical care free of charge in designated hospitals. The number of designated hospitals includes 23 hospitals and one clinic for sexually-transmitted disease (STD). Antiretroviral therapy (zidovudine, didanosine, zalcitabine) has been provided free to HIV infected patients since 1990. Protease inhibitors (indinavir, ritonavir, saquinavir, stavudine, and lamivudine) were not available until April 1997, after which time HAART was administered to HIV infected patients who decided to receive anti-retroviral therapy. As expected, HAART has delayed disease progression, decreased opportunistic infections, and reduced the length of hospitalizations. The therapy has also produced severe and intolerable side effects for patients.26 There have been no previous studies focusing on understanding symptom management of patients with HIV/AIDS
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in Taiwan, and it is critical that this issue be explored.
were also asked to write other suggestions for dealing with the symptom.
Methods
Procedures
A descriptive design was used to understand symptom experience and the self-care management strategies used by patients with HIV/ AIDS. In addition, information on symptom management strategies was acquired from healthcare providers.
Sample and Setting A convenience sample was selected from four designated hospitals, one STD clinic and one community-based home visit setting that are geographically located in the northern, central, and eastern parts of Taiwan. A total of 167 HIV-infected persons and 31 healthcare providers participated. Because 33 HIV-infected persons did not have any self-management strategies, 134 cases were used for final data analysis. The average age of HIV-infected participants was 33.8 years (SD7.9) and 94% (n126) were male. Half of them had a college diploma. Most were single (76.1%), Buddhists (32.1%), living with parents (32.1%), had never had a drug abuse history (96.3%), and used HAART (89.6%). The average of CD4 count was 356.1 (SD294.5). They were known HIV positive for an average of 36.5 months. The average age of healthcare providers was 32.6 years (SD8.5). Among them, 67.7% were nurses, 22.6% were doctors, and 9.7% were social workers. Most of them were female (75.9%), had a college diploma (79.3%), were single (51.7%), worked in hospital settings, and had cared for 1 to 10 HIV/AIDS patients (65.5%). The average duration of working with HIV/AIDS patients was 38.1 months (SD45.9).
Instruments Self-report and semi-structured questionnaires were used in the study. HIV-infected persons were asked to describe three symptoms they had frequently experienced and their effective self-management strategies to relieve them. Healthcare providers were asked to describe three symptoms that they often observed among their patients and the management strategies carried out by their patients. They
With the permission of each hospital and clinical, the research assistant went to AIDS outpatient clinics and inpatient units to approach all possible subjects. After explaining the purpose of this study, they were invited to participate. All HIV-infected persons and healthcare providers who wished to participate were asked to complete the questionnaires. Every questionnaire also included an attached letter to explain the study and participants’ rights.
Analysis Content analysis was used to categorize all symptom management strategies. Frequencies were also computed.
Results Nausea (n54), pain (n33), anxiety (n29), vomiting (n22), diarrhea (n20), fear (n19) and lack of appetite (n14) were described very frequently by HIV-infected patients. The self-care management strategies used for these symptoms and the source of this information are shown in Table 1. In general, participants frequently ate heavily flavored food as a way to dealing with vomiting, nausea, and lack of appetite. They applied different self-care strategies in managing various types of pains. For example, patients frequently used massage for management of headache and muscle pain. Also, they either endured or took prescribed medications for dealing with joint pain. In addition, rest was described frequently to manage non-specific pain. For anxiety and fear, participants frequently talked to others as a way of dealing with the symptoms. Shifting attention was also commonly used to managing the symptom of anxiety. “To endure” was the most frequently used self-care management strategy to handle diarrhea by HIV-infected persons. Nausea (n13), anxiety (n10), diarrhea (n9), fever (n8), fear (n7), pain (n5) and vomiting (n5) were observed frequently by healthcare providers. Healthcare providers’ observations about patients’ symptom management and other suggestions for management
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of HIV/AIDS-related symptoms are presented in Table 2. In general, healthcare providers observed that patients frequently used eating heavily flavored
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food to manage the symptom of nausea. Talking to others was commonly observed to deal with anxiety. Nothing by mouth (NPO) was observed to manage diarrhea, drinking a large
Table 1 Self-Care Management of HIV/AIDS Symptoms Symptom (Frequency)
Self-Care Management (Frequency)
Nausea (54)
Breathe in fresh air (2). Chew gum (2). Do things to shift attention (3). Drink coffee (3). Drink water (6). Eat dry food (e.g., toast and crackers) (2). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (20). Exercise (1). Smell favorite odor (1). Stop eating for a while (3). Take Chinese medicine (5). Take your medicine as prescribed (3). Try relaxing activities (3).
Pain (33)
Anxiety (29)
Headache: (8) Do things to shift attention (1). Drink hot water (2). Massage (3). Rest (2). Take Chinese herb (1). Muscle pain: (10) Cover with a hot pack (1). Endure (1). Exercise (2). Massage (4). Rest (3). Take a warm bath (2). Joint pain: (4) Endure (2). Keep joints warm (1) Massage (1). Take medicine as prescribed (2). Not specified: (11) Endure (1). Ignore (1). Massage (2). Rest (4). Take Chinese medicine (1). Take medicines (2). Do things to shift attention (6). Eat more fruits and vegetables (1). Enough sleeping time (2). Exercise (1). Learn positive ways of thinking (1). Listen to music (4). Maintain a good mood (3). Read Buddhist scripture (1). Pray (2). Set a regular life pattern (1). Support from friends and family (3). Suppression (2). Talk to others (6). Watch TV (2).
Source (Frequency) A
B
C
1 2 1 5 1 6 1 1 3
1
1 1
2
3
D
E
1 1 1 1
1
4
1
2
F
G
H
1
2
1 1 1
3
3
1
2
3 1 1 2 1 1
1 1 1
1 1 2 4 3 2
1 1
2 1 1 2 1 1 2 3
1 1 1
2 5
2 1 1 1
1 1 4 3 1
1 2
1 2 1 2
1
1
1
1
1 1
2
1
1
(continued)
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Table 1 Self-Care Management of HIV/AIDS Symptoms (Continued) Symptom (Frequency) Vomiting (22)
Diarrhea (20)
Fear (19)
Lack of Appetite (14)
Self-Care Management (Frequency) Avoid fried foods (1). Do things to shift attention (2). Drink coffee (1). Drink water (1). Eat dry food (e.g., toast and crackers) (1). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (6). Eat small portions of food (1). Go to see a doctor and to discuss about changing medicine (5). Listen to music (1). Pray (1). Take Chinese medicine (1). Take medicine as prescribed (1). Avoid fried foods (1). Do things to shift attention (2). Drink more water (1). Eat fruits such as apple and guava (3). Eat small portions of food (1). Endure (6). Go to see a doctor and to discuss about changing medicine (2). Rest (1). Take Chinese medicine (1). Take medicine as prescribed (3). Attend religious activities (e.g., go to church or temple) (3). Avoid taking medicine in public (1). Do things to shift attention (1). Endure (2). Exercise (2). Ignore fear (3). Seek counseling (2). Sleep (1). Social support (e.g., from family, friends, and nurses (1). Take a walk (1). Talk to others (5). Try to make life more meaningful (1). Eat favor food (2). Eat heavy flavor food (e.g., salted or soured fruits) or candy (2). Eat natural concentrated/extract food (1). Eat small portions of food (2). Empower self to eat (2). Exercise to simulate appetite (2). Go to see a doctor and to discuss about changing medicine (2). Take Chinese medicine (1). Take vitamins (1).
A: Self B: Doctor C: Nurse D: Friend E: Family F: Patients’ peer G: Self-help group H: Others (e.g., book, newspaper, TV shows)
Source (Frequency) A
B
C
1
1
D
E
F
G
H 1
2 1 1 3
1
1
1 1
1 1
4
1 1 1 1 1 1
1 1
1 1 2 1 2 1 6
2 1
2 1 1 3 1 1 1 2 1 3 1 1
1
1
1
1 1
1 1 2 1
1
1
2
2 2 1 2 2 1
1 1
1
2 1 1
1
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Table 2 Healthcare Providers’ Observation on Patients’ Management of HIV/AIDS Symptoms Observed Patients’ Management Strategies (Frequency)
Symptom (Frequency)
Additional Suggestions
Nausea (13)
Avoid fried foods (2). Do things to shift attention (1). Eat dry food (e.g., toast and crackers) (2). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (4). Eat small portions of food (2). Endure (3). Go to see a doctor and discuss about changing medicines (1). Take their medicine as prescribed (2). Swallow saliva (2).
Aromatic therapy. Don’t take medicine when hungry. Take it easy. Ask help from healthcare providers.
Anxiety (10)
Go to see a doctor and discuss about changing medicines (1). Shift attention (2). Support from friends and family (2). Take medicine as prescribed (2). Talk to others (4).
Attend peer support group. Set up a channel for conversation. Listening. Mental support. Write a diary to explore feelings.
Diarrhea (9)
Discuss changing medicine with doctor (2). Eat vegetable and fruits (1). Endure (2). Maintain cleanliness and skin intact (2). Monitor eating condition (1). NPO (3). Take anti-diarrhea drug (2).
Admit to a hospital for a checkup. Consult nutritionist. Exercise to increase energy. Send to ER or OPD.
Fever (8)
Cover with ice pack (1). Drink a vast amount of water (4). Rest (2). Sleep with a ice pillow (3). Take anti-fever drug (3). Take a shower (2).
Adjust room temperature. Go to see a doctor.
Fear (7)
Talk to nurses (3). Talk to social worker (2). Suppression (2).
Build a relationship. Consultation. Express feelings. Help patient to understand the disease. Offer information. Talk to family.
Pain (5)
Endure (1). Rest (1). Take medicine (4). Take ointment (1).
Cover with a hot pack. Massage.
Vomiting (5)
Avoid fried foods (1). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (1). Eat small portions of food (1). Endure (2). NPO (1).
Take anti-vomiting drug.
amount of water was observed to manage fever, talking to nurses was observed to manage fear, taking medicine was observed to manage pain, and enduring was frequently observed to manage vomiting.
Discussion This study provides important data about the self-care management of symptoms among
HIV-infected persons and the symptom management strategies suggested by healthcare providers. For example, eating heavily flavored food (e.g., foods or fruits preserved in salt, as well as candy) was treated as a useful strategy to deal with vomiting, nausea, and lack of appetite for HIV-infected persons. Some studies in Western cultures had similar findings. Salted foods such as cucumbers, Sianggu mushroom, and seaweed are sold as canned foods in most
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Chinese communities. Salted fruits are also commonly used as snacks. People believe that this kind of food can increase appetite and avoid the feeling of nausea and vomiting, which may explain why HIV-infected persons used this strategy to deal with symptoms. HIV-infected participants reported using Traditional Chinese Medicines (TCM) to deal with the symptoms of HIV/AIDS. Compared with other studies in Western cultures, this is a phenomenon that is more specific to Chinese culture. Thus far, we still have very limited understanding about how and why Chinese medicines can help to relieve these symptoms. However, it is a cultural belief that Chinese medicines cause fewer side effects than Western medicines. In the long run, many believe that it is healthier and wiser to take Chinese medicines. No healthcare providers recommended that their patients use Chinese medicines. The suggestions all came from the peers of HIV-infected persons or friends. Further studies are needed to explore the use of Chinese medicine among these patients. Most self-care management strategies were performed by the patients themselves. Excluding the symptoms of anxiety and fear, few strategies involved others. This finding suggests that there may be too few available resources or overconcern about confidentiality issues. Energy is a very important concept for the Chinese people, who believe that having enough energy can prevent them from getting any infections or diseases. In the past, foods were prepared with Chinese herbs to maintain their energy. Currently, some use vitamins, or food concentrates or extracts for this. Some people eat natural foods, such as organic vegetables and fruits, to achieve the same purpose. They also believe that this way can also increase their immune function. This sample of HIV/AIDS patients reported several self-management strategies for HIV-related symptoms that focus upon balancing energy. Healthcare providers reported fewer strategies thought to be used by patients in management of HIV/AIDS symptoms than patients’ self-reports. In addition, fever was a symptom commonly observed by healthcare providers but was not reported by patients. Patients reported lack of appetite as a common symptom, but this was not observed by healthcare providers. These differences should be explored in
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future studies. Moreover, the rank orders of symptom management strategies varied between patients and healthcare providers. For example, HIV-infected patients used different self-care management strategies for various pain types, but healthcare providers did not distinguish among the different types of pain. Providers reported that taking medications is the most frequently observed strategy for managing pain, but it was only for joint pain based on patients’ self-report. Healthcare providers reported that enduring was the most frequently observed strategy for dealing with vomiting, but eating heavily flavored food was the most frequently reported by patients to manage this symptom. Healthcare providers also reported that NPO was the most frequently observed strategy for dealing with diarrhea, but enduring was most frequently reported by patients to manage this symptom. Healthcare providers’ other suggestions for management of symptoms emphasized professional care. They suggested that patients could seek consultations, build up a network for conversation, go to see a doctor or nutritionist, visit an emergency department or ambulatory clinic, or take medicine to relieve their symptoms. Some of them were mentioned by patients but these strategies did not belong to their major self-care management strategies. Patients and healthcare providers listed “to endure” as a self-care strategy. Based on healthcare providers’ data, they viewed symptoms as natural consequences of using ART. For the purpose of saving life, they might perceive “enduring” as a reasonable strategy to managing symptoms. Some patients also expressed that they use this strategy to deal with their symptoms. This may suggest that symptom management in HIV/AIDS is an under-explored issue in Taiwan. It is not clear if management strategies exist to help these patients deal with their symptoms. Consequently, healthcare providers can only observe their patients’ suffering but cannot suggest or offer effective management strategies. Many studies have shown that symptoms can influence patients’ adherence to medications and quality of life, yet asking clients to endure a life of severe symptoms may not be persuasive. It is an essential task for all healthcare providers to build a greater awareness of knowledge of symptom management in Taiwan.
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There are examples of self-care management strategies available for HIV related symptoms (see http://hivsymptoms.ucsf.edu).
sexual men with human immunodeficiency virus infection. Am J Psychiatry 1989;146:876–880.
Conclusion
7. Gustafson DH, Hawkins R, Boberg E, et al. Impact of a patient-centered, computer-based health information/support system. Am J Preventive Med 1999;16:1–9.
The results of this study confirm the problems identified in the Western literature, though the order and frequency of the symptoms may be different. There appears to be a gap between what healthcare providers offer and what patients suffer. The findings of the study revealed that patients report many valuable symptom management strategies. The results can help healthcare providers better understand these symptom management strategies from the patients’ perspective. As the strategies were either observed or self-reported by patients, their cultural relevancy is implied. A manual containing selected self-care strategies would undoubtedly be useful and beneficial to patients with HIV/AIDS symptoms. With the manual, healthcare providers can also empower these patients to decide what they consider to be best for them. Further studies should emphasize exploring the effectiveness of these symptom management strategies.
Acknowledgments This research was supported by the National Science Council (NSC 89-2314-B-320-017), NSC, Yun-Fang Tsai, PI.
6. Hsiung P, Tsai Y, Liang C, Shih C. Factors in psychiatric distress of patients with AIDS. Formosan J Med 2000;4:398–406.
8. Sangkard K, Ratanasombat S, Kimee S. Effect of supportive nursing care on life satisfaction and self care ability in HIV infected persons. Int Conf AIDS 1998;12:356. 9. Coene, EH, Fransen H, Vrij J. Self-care manuals for persons with HIV and AIDS in 10 countries of the European community. Int Conf AIDS 1996;11:180. 10. Lovejoy NC, Paul S, Freeman E, Christianson B. Potential correlates of self-care and symptom distress in homosexual/bisexual men who are HIV seropositive. Oncol Nursing Forum 1991;18:1175–1185. 11. Israelski D, Eversley R, Janjua S, Smith S. Race, HIV symptoms, recovery from drug abuse, and appointment adherence are associated with quality of life (QOL) among HIV infected women. 12th World AIDS Conference, Geneva, 1998. 12. Shively M, Gifford AL, Bormann JE, Timberlake DS, Bozzette SA. Developing symptom indices to assess health outcomes in persons with HIV/AIDS. 12th World AIDS Conference, Geneva, 1998. 13. Lubeck DP, Fries JF. Health status among persons infected with human immunodeficiency virus. A community-based study. Med Care 1993; 31: 269–276. 14. Valente S, Saunders JM, Uman G. Self-care, psychological distress, and HIV disease. J Assoc Nurses AIDS Care 1993; 4:15–25.
References
15. Mazonson PD, Lubeck D, Bennett C, Fifer S, Fries J. Quality-of-life among HIV patients with chronic diarrhea. Presented at the International Conference on AIDS, Amsterdam, July 1992. Poster Abstracts, 2, B178.
1. Fantoni M, Ricci F, Del Borgo C. Multicentre study on the prevalence of symptoms and symptomatic treatment in HIV infection. Central Italy PRESINT Group. J Palliative Care 1997;13:9–13.
16. Wachtel T, Piette J, Mor V, et al. Quality of life in persons with human immunodeficiency virus infection: measurement by the Medical Outcomes Study instrument. Annals Int Med 1992; 116:129–137.
2. Rosenfeld DVB, Breitbart W, Thaler H, et al. Symptom prevalence, characteristics, and distress in AIDS outpatients. J Pain Symptom Manage 1999;18: 253–262.
17. Ragsdale D, Morrow JR. Quality of life as a function of HIV classification. Nursing Res 1990;39: 355–359.
3. Reilly CA, Holzemer WL, Henry SB, Slaughter R, Portillo C. A comparison of patient and nurse ratings of human immunodeficiency virus-related signs and symptoms. Nursing Res 1997;6:318–323. 4. Atkinson JH, Grant I, Kennedy C, et al. Prevalence of psychiatric disorders among men infected with human immunodeficiency virus. Arch General Psychiatry 1988;45:859–864. 5. Chuang HT, Devins GM, Hunsley J, Gill MJ. Psychosocial distress and well-being among gay and bi-
18. Gebbie KM. A holistic look at the human immunodeficiency virus pandemic. Holistic Nursing Prac 1995;10:1–9. 19. Zeller JM, Swanson B, Cohen FL. Suggestions for clinical nursing research: Symptom management in AIDS patients. J Assoc Nurses AIDS Care 1993; 4:13–17. 20. Holzemer WL, Henry SB, Reilly CA. Slaughter RE. A comparison of persons with AIDS and nurse reports of symptoms. Proceedings of the Tenth International Conference on AIDS 1994: Yokohama, Japan, 338B/D.
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21. Fontaine A, Larue F, Lassauniere J. Physicians’ recognition of the symptoms experienced by HIV patients: How reliable? J Pain Symptom Manage 1999; 13:263–270.
24. University of California, San Francisco School of Nursing Symptom Management Faculty Group. A model for symptom management. Image: J Nursing Scholarship 1994; 26:272–276.
22. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. J Am Med Assoc 1995; 273:59–65.
25. Health of Department. HIV/AIDS Prevalence 2000.
23. Hegyvary ST. Issues in outcomes research. J Nurs Quality Assur 1993; 5:1–6.
26. Palella FJ, Delaney KM, Moorman AC, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. N Engl J Med 1998; 338:853–860.
Journal of Pain and Symptom Management
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Original Article
Symptom Management in Taiwanese Patients with HIV/AIDS Yun-Fang Tsai, RN, PhD, Ping-Chuan Hsiung, RN, PhD, and William L. Holzemer, RN, PhD, FAAN School of Nursing (Y.-F.T.), Chang Gung University and Department of Nursing (P.-C.H.), National Taiwan University, Taiwan, Republic of China; and Department of Community Health Systems (W.L.H.), University of California at San Francisco, San Francisco, California, USA
Abstract The purpose of this study was to explore HIV/AIDS patients’ symptom experiences and selfcare symptom management strategies using a semi-structured questionnaire. Concurrently, the investigators gathered information about patients’ symptom management strategies from healthcare providers. A total of 134 HIV-infected persons and 31 healthcare providers voluntarily participated in this study. Nausea, pain, anxiety, vomiting, diarrhea, fear and lack of appetite were described frequently by HIV-infected participants. Nausea, anxiety, diarrhea, fever, fear, pain and vomiting were observed frequently by healthcare providers. The management strategies used by these patients are presented and the differences in findings between Taiwan and Western cultures are discussed. In general, the results indicated that healthcare providers hold limited knowledge about self-care symptom management of HIV/ AIDS. Filling this knowledge gap is an essential task for all healthcare providers in Taiwan. J Pain Symptom Manage 2002;23:301–309. © U.S. Cancer Pain Relief Committee, 2002. Key Words Symptoms, HIV/AIDS, Taiwan, self-care
Introduction The development of highly-active anti-retroviral therapies (HAART) has increased the life expectancy of persons who are human immunodeficiency virus (HIV) positive and have acquired immunodeficiency syndrome (AIDS). As a result, AIDS is gradually being seen as a chronic disease in countries that have access to HAART. HIV-infected patients experience many
Address reprint requests to: Yun-Fang Tsai, RN, PhD, School of Nursing, Chang Gung University, 259 Wen-Hwa 1st Road, Kwei-Shan, Tao-Yuan, 333, Taiwan, Republic of China. Accepted for publication: July 9, 2001. © U.S. Cancer Pain Relief Committee, 2002 Published by Elsevier, New York, New York
symptoms that are related to opportunistic infections and malignancies, and to the side effects from prophylactic and therapeutic interventions. Helping patients to reduce the interference caused by symptoms and maintain a quality of life is a challenge for all healthcare providers. Effective symptom management can help HIV-infected patients to prevent, assess and treat their symptoms. Many studies have suggested that patient self-report is the “gold standard” for understanding the symptom experience. The purpose of this study was to understand this symptom experience and the self-care management approaches used by HIV-infected persons. Information about symptom manage0885-3924/02/$–see front matter PII S0885-3924(01)00413-4
302
Tsai, et al.
ment strategies provided by healthcare providers were also collected.
Literature Review Symptoms occur at all stages of HIV infection. Fantoni et al. surveyed 1,128 HIV-infected ambulatory patients and found that their most frequent symptoms were fatigue (65%), anorexia (34%), cough (32%), pain (29%) and fever (29%).1 Rosenfeld and his colleagues reported that the average number of symptom among 504 ambulatory patients with AIDS was 16.7 (SD7.3).2 The most prevalent symptoms were worrying (86%), fatigue (85%), sadness (82%), and pain (76%). Reilly et al. also found that the average number of symptom among 207 patients with AIDS was 16.3 More than 50% of them reported shortness of breath, fatigue, cough, weakness, dry mouth, insomnia, lack of appetite, weight loss, and headaches. The most severe problems were fatigue, weakness, shortness of breath during activities and dry mouth. In addition, some studies have found that the prevalence of psychiatric illness, particularly depression, anxiety and substance abuse, is higher among HIV-infected patients than others.4–5 In Taiwan, one study6 found that HIV/AIDS patients reported an average of 12 physical symptoms (SD6.49). Among them, fatigue, weaknesses, shortness of breath with activity, dry mouth and thirst were the most frequent and severe. Insomnia and depression were the most frequent and severe types of psychological distress experienced by patients. In Taiwan or elsewhere, it is clear that most patients experience more than one symptom. Several studies have pointed out that symptoms could influence HIV/AIDS patients’ quality of life.7–10 The relationships between symptoms and quality of life were demonstrated before and after the use of HAART. Although studies have used various ways to measure symptoms and quality of life, the findings are consistent, i.e. quality of life decreases as the severity of the HIV/AIDS symptom increases. The meaning of living with this symptom experience can only be captured from the patient’s perspective.11–17 Because of the relationship between symptom distress and quality of life, effective symptom management becomes a very important issue for improving patients’ quality of life. Researchers have pointed out that nurses have a significant role in the detection and manage-
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ment of symptoms.18–19 However, nurses tended to underestimate the severity and frequency of symptoms.3, 20 Physicians also poorly recognize the symptoms experienced by HIV patients.21 Wilson and Cleary22 defined a symptom as a patient’s perception of an abnormal physical, emotional, or cognitive state. Hegyvery23 defined symptoms as the perceived indicators of change in normal functioning, as experienced by patients. After working with the concept of symptom for an extended period, the University of California San Francisco School of Nursing Symptom Management Faculty Group24 defined symptoms as subjective experiences reflecting changes in a person’s biopsychosocial function, sensation or cognition. The latter model acknowledged the relationship between signs (detectable by another person and sometimes the patient) and symptoms, noting that both signs and symptoms bring the attention of a patient and healthcare provider to a problem. The model included three interrelated dimensions: (a) symptom experience; (b) symptom management strategies provided by patient, family, healthcare providers and the healthcare system; and (c) symptom outcomes. The focus of this paper is on the first dimension, symptom experience, and the second dimension, symptom management. Since the mid-1980s, Taiwan has seen a dramatic increase in the number of people diagnosed with HIV, from 9 people in 1984 to 2755 in September 2000. Of those diagnosed, 34.9% have developed AIDS and 92.1% were male.25 Patients with HIV infection are able to receive their medical care free of charge in designated hospitals. The number of designated hospitals includes 23 hospitals and one clinic for sexually-transmitted disease (STD). Antiretroviral therapy (zidovudine, didanosine, zalcitabine) has been provided free to HIV infected patients since 1990. Protease inhibitors (indinavir, ritonavir, saquinavir, stavudine, and lamivudine) were not available until April 1997, after which time HAART was administered to HIV infected patients who decided to receive anti-retroviral therapy. As expected, HAART has delayed disease progression, decreased opportunistic infections, and reduced the length of hospitalizations. The therapy has also produced severe and intolerable side effects for patients.26 There have been no previous studies focusing on understanding symptom management of patients with HIV/AIDS
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in Taiwan, and it is critical that this issue be explored.
were also asked to write other suggestions for dealing with the symptom.
Methods
Procedures
A descriptive design was used to understand symptom experience and the self-care management strategies used by patients with HIV/ AIDS. In addition, information on symptom management strategies was acquired from healthcare providers.
Sample and Setting A convenience sample was selected from four designated hospitals, one STD clinic and one community-based home visit setting that are geographically located in the northern, central, and eastern parts of Taiwan. A total of 167 HIV-infected persons and 31 healthcare providers participated. Because 33 HIV-infected persons did not have any self-management strategies, 134 cases were used for final data analysis. The average age of HIV-infected participants was 33.8 years (SD7.9) and 94% (n126) were male. Half of them had a college diploma. Most were single (76.1%), Buddhists (32.1%), living with parents (32.1%), had never had a drug abuse history (96.3%), and used HAART (89.6%). The average of CD4 count was 356.1 (SD294.5). They were known HIV positive for an average of 36.5 months. The average age of healthcare providers was 32.6 years (SD8.5). Among them, 67.7% were nurses, 22.6% were doctors, and 9.7% were social workers. Most of them were female (75.9%), had a college diploma (79.3%), were single (51.7%), worked in hospital settings, and had cared for 1 to 10 HIV/AIDS patients (65.5%). The average duration of working with HIV/AIDS patients was 38.1 months (SD45.9).
Instruments Self-report and semi-structured questionnaires were used in the study. HIV-infected persons were asked to describe three symptoms they had frequently experienced and their effective self-management strategies to relieve them. Healthcare providers were asked to describe three symptoms that they often observed among their patients and the management strategies carried out by their patients. They
With the permission of each hospital and clinical, the research assistant went to AIDS outpatient clinics and inpatient units to approach all possible subjects. After explaining the purpose of this study, they were invited to participate. All HIV-infected persons and healthcare providers who wished to participate were asked to complete the questionnaires. Every questionnaire also included an attached letter to explain the study and participants’ rights.
Analysis Content analysis was used to categorize all symptom management strategies. Frequencies were also computed.
Results Nausea (n54), pain (n33), anxiety (n29), vomiting (n22), diarrhea (n20), fear (n19) and lack of appetite (n14) were described very frequently by HIV-infected patients. The self-care management strategies used for these symptoms and the source of this information are shown in Table 1. In general, participants frequently ate heavily flavored food as a way to dealing with vomiting, nausea, and lack of appetite. They applied different self-care strategies in managing various types of pains. For example, patients frequently used massage for management of headache and muscle pain. Also, they either endured or took prescribed medications for dealing with joint pain. In addition, rest was described frequently to manage non-specific pain. For anxiety and fear, participants frequently talked to others as a way of dealing with the symptoms. Shifting attention was also commonly used to managing the symptom of anxiety. “To endure” was the most frequently used self-care management strategy to handle diarrhea by HIV-infected persons. Nausea (n13), anxiety (n10), diarrhea (n9), fever (n8), fear (n7), pain (n5) and vomiting (n5) were observed frequently by healthcare providers. Healthcare providers’ observations about patients’ symptom management and other suggestions for management
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of HIV/AIDS-related symptoms are presented in Table 2. In general, healthcare providers observed that patients frequently used eating heavily flavored
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food to manage the symptom of nausea. Talking to others was commonly observed to deal with anxiety. Nothing by mouth (NPO) was observed to manage diarrhea, drinking a large
Table 1 Self-Care Management of HIV/AIDS Symptoms Symptom (Frequency)
Self-Care Management (Frequency)
Nausea (54)
Breathe in fresh air (2). Chew gum (2). Do things to shift attention (3). Drink coffee (3). Drink water (6). Eat dry food (e.g., toast and crackers) (2). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (20). Exercise (1). Smell favorite odor (1). Stop eating for a while (3). Take Chinese medicine (5). Take your medicine as prescribed (3). Try relaxing activities (3).
Pain (33)
Anxiety (29)
Headache: (8) Do things to shift attention (1). Drink hot water (2). Massage (3). Rest (2). Take Chinese herb (1). Muscle pain: (10) Cover with a hot pack (1). Endure (1). Exercise (2). Massage (4). Rest (3). Take a warm bath (2). Joint pain: (4) Endure (2). Keep joints warm (1) Massage (1). Take medicine as prescribed (2). Not specified: (11) Endure (1). Ignore (1). Massage (2). Rest (4). Take Chinese medicine (1). Take medicines (2). Do things to shift attention (6). Eat more fruits and vegetables (1). Enough sleeping time (2). Exercise (1). Learn positive ways of thinking (1). Listen to music (4). Maintain a good mood (3). Read Buddhist scripture (1). Pray (2). Set a regular life pattern (1). Support from friends and family (3). Suppression (2). Talk to others (6). Watch TV (2).
Source (Frequency) A
B
C
1 2 1 5 1 6 1 1 3
1
1 1
2
3
D
E
1 1 1 1
1
4
1
2
F
G
H
1
2
1 1 1
3
3
1
2
3 1 1 2 1 1
1 1 1
1 1 2 4 3 2
1 1
2 1 1 2 1 1 2 3
1 1 1
2 5
2 1 1 1
1 1 4 3 1
1 2
1 2 1 2
1
1
1
1
1 1
2
1
1
(continued)
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Table 1 Self-Care Management of HIV/AIDS Symptoms (Continued) Symptom (Frequency) Vomiting (22)
Diarrhea (20)
Fear (19)
Lack of Appetite (14)
Self-Care Management (Frequency) Avoid fried foods (1). Do things to shift attention (2). Drink coffee (1). Drink water (1). Eat dry food (e.g., toast and crackers) (1). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (6). Eat small portions of food (1). Go to see a doctor and to discuss about changing medicine (5). Listen to music (1). Pray (1). Take Chinese medicine (1). Take medicine as prescribed (1). Avoid fried foods (1). Do things to shift attention (2). Drink more water (1). Eat fruits such as apple and guava (3). Eat small portions of food (1). Endure (6). Go to see a doctor and to discuss about changing medicine (2). Rest (1). Take Chinese medicine (1). Take medicine as prescribed (3). Attend religious activities (e.g., go to church or temple) (3). Avoid taking medicine in public (1). Do things to shift attention (1). Endure (2). Exercise (2). Ignore fear (3). Seek counseling (2). Sleep (1). Social support (e.g., from family, friends, and nurses (1). Take a walk (1). Talk to others (5). Try to make life more meaningful (1). Eat favor food (2). Eat heavy flavor food (e.g., salted or soured fruits) or candy (2). Eat natural concentrated/extract food (1). Eat small portions of food (2). Empower self to eat (2). Exercise to simulate appetite (2). Go to see a doctor and to discuss about changing medicine (2). Take Chinese medicine (1). Take vitamins (1).
A: Self B: Doctor C: Nurse D: Friend E: Family F: Patients’ peer G: Self-help group H: Others (e.g., book, newspaper, TV shows)
Source (Frequency) A
B
C
1
1
D
E
F
G
H 1
2 1 1 3
1
1
1 1
1 1
4
1 1 1 1 1 1
1 1
1 1 2 1 2 1 6
2 1
2 1 1 3 1 1 1 2 1 3 1 1
1
1
1
1 1
1 1 2 1
1
1
2
2 2 1 2 2 1
1 1
1
2 1 1
1
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Table 2 Healthcare Providers’ Observation on Patients’ Management of HIV/AIDS Symptoms Observed Patients’ Management Strategies (Frequency)
Symptom (Frequency)
Additional Suggestions
Nausea (13)
Avoid fried foods (2). Do things to shift attention (1). Eat dry food (e.g., toast and crackers) (2). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (4). Eat small portions of food (2). Endure (3). Go to see a doctor and discuss about changing medicines (1). Take their medicine as prescribed (2). Swallow saliva (2).
Aromatic therapy. Don’t take medicine when hungry. Take it easy. Ask help from healthcare providers.
Anxiety (10)
Go to see a doctor and discuss about changing medicines (1). Shift attention (2). Support from friends and family (2). Take medicine as prescribed (2). Talk to others (4).
Attend peer support group. Set up a channel for conversation. Listening. Mental support. Write a diary to explore feelings.
Diarrhea (9)
Discuss changing medicine with doctor (2). Eat vegetable and fruits (1). Endure (2). Maintain cleanliness and skin intact (2). Monitor eating condition (1). NPO (3). Take anti-diarrhea drug (2).
Admit to a hospital for a checkup. Consult nutritionist. Exercise to increase energy. Send to ER or OPD.
Fever (8)
Cover with ice pack (1). Drink a vast amount of water (4). Rest (2). Sleep with a ice pillow (3). Take anti-fever drug (3). Take a shower (2).
Adjust room temperature. Go to see a doctor.
Fear (7)
Talk to nurses (3). Talk to social worker (2). Suppression (2).
Build a relationship. Consultation. Express feelings. Help patient to understand the disease. Offer information. Talk to family.
Pain (5)
Endure (1). Rest (1). Take medicine (4). Take ointment (1).
Cover with a hot pack. Massage.
Vomiting (5)
Avoid fried foods (1). Eat heavily-flavored food (e.g., salted or soured fruits) or candy (1). Eat small portions of food (1). Endure (2). NPO (1).
Take anti-vomiting drug.
amount of water was observed to manage fever, talking to nurses was observed to manage fear, taking medicine was observed to manage pain, and enduring was frequently observed to manage vomiting.
Discussion This study provides important data about the self-care management of symptoms among
HIV-infected persons and the symptom management strategies suggested by healthcare providers. For example, eating heavily flavored food (e.g., foods or fruits preserved in salt, as well as candy) was treated as a useful strategy to deal with vomiting, nausea, and lack of appetite for HIV-infected persons. Some studies in Western cultures had similar findings. Salted foods such as cucumbers, Sianggu mushroom, and seaweed are sold as canned foods in most
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Chinese communities. Salted fruits are also commonly used as snacks. People believe that this kind of food can increase appetite and avoid the feeling of nausea and vomiting, which may explain why HIV-infected persons used this strategy to deal with symptoms. HIV-infected participants reported using Traditional Chinese Medicines (TCM) to deal with the symptoms of HIV/AIDS. Compared with other studies in Western cultures, this is a phenomenon that is more specific to Chinese culture. Thus far, we still have very limited understanding about how and why Chinese medicines can help to relieve these symptoms. However, it is a cultural belief that Chinese medicines cause fewer side effects than Western medicines. In the long run, many believe that it is healthier and wiser to take Chinese medicines. No healthcare providers recommended that their patients use Chinese medicines. The suggestions all came from the peers of HIV-infected persons or friends. Further studies are needed to explore the use of Chinese medicine among these patients. Most self-care management strategies were performed by the patients themselves. Excluding the symptoms of anxiety and fear, few strategies involved others. This finding suggests that there may be too few available resources or overconcern about confidentiality issues. Energy is a very important concept for the Chinese people, who believe that having enough energy can prevent them from getting any infections or diseases. In the past, foods were prepared with Chinese herbs to maintain their energy. Currently, some use vitamins, or food concentrates or extracts for this. Some people eat natural foods, such as organic vegetables and fruits, to achieve the same purpose. They also believe that this way can also increase their immune function. This sample of HIV/AIDS patients reported several self-management strategies for HIV-related symptoms that focus upon balancing energy. Healthcare providers reported fewer strategies thought to be used by patients in management of HIV/AIDS symptoms than patients’ self-reports. In addition, fever was a symptom commonly observed by healthcare providers but was not reported by patients. Patients reported lack of appetite as a common symptom, but this was not observed by healthcare providers. These differences should be explored in
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future studies. Moreover, the rank orders of symptom management strategies varied between patients and healthcare providers. For example, HIV-infected patients used different self-care management strategies for various pain types, but healthcare providers did not distinguish among the different types of pain. Providers reported that taking medications is the most frequently observed strategy for managing pain, but it was only for joint pain based on patients’ self-report. Healthcare providers reported that enduring was the most frequently observed strategy for dealing with vomiting, but eating heavily flavored food was the most frequently reported by patients to manage this symptom. Healthcare providers also reported that NPO was the most frequently observed strategy for dealing with diarrhea, but enduring was most frequently reported by patients to manage this symptom. Healthcare providers’ other suggestions for management of symptoms emphasized professional care. They suggested that patients could seek consultations, build up a network for conversation, go to see a doctor or nutritionist, visit an emergency department or ambulatory clinic, or take medicine to relieve their symptoms. Some of them were mentioned by patients but these strategies did not belong to their major self-care management strategies. Patients and healthcare providers listed “to endure” as a self-care strategy. Based on healthcare providers’ data, they viewed symptoms as natural consequences of using ART. For the purpose of saving life, they might perceive “enduring” as a reasonable strategy to managing symptoms. Some patients also expressed that they use this strategy to deal with their symptoms. This may suggest that symptom management in HIV/AIDS is an under-explored issue in Taiwan. It is not clear if management strategies exist to help these patients deal with their symptoms. Consequently, healthcare providers can only observe their patients’ suffering but cannot suggest or offer effective management strategies. Many studies have shown that symptoms can influence patients’ adherence to medications and quality of life, yet asking clients to endure a life of severe symptoms may not be persuasive. It is an essential task for all healthcare providers to build a greater awareness of knowledge of symptom management in Taiwan.
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There are examples of self-care management strategies available for HIV related symptoms (see http://hivsymptoms.ucsf.edu).
sexual men with human immunodeficiency virus infection. Am J Psychiatry 1989;146:876–880.
Conclusion
7. Gustafson DH, Hawkins R, Boberg E, et al. Impact of a patient-centered, computer-based health information/support system. Am J Preventive Med 1999;16:1–9.
The results of this study confirm the problems identified in the Western literature, though the order and frequency of the symptoms may be different. There appears to be a gap between what healthcare providers offer and what patients suffer. The findings of the study revealed that patients report many valuable symptom management strategies. The results can help healthcare providers better understand these symptom management strategies from the patients’ perspective. As the strategies were either observed or self-reported by patients, their cultural relevancy is implied. A manual containing selected self-care strategies would undoubtedly be useful and beneficial to patients with HIV/AIDS symptoms. With the manual, healthcare providers can also empower these patients to decide what they consider to be best for them. Further studies should emphasize exploring the effectiveness of these symptom management strategies.
Acknowledgments This research was supported by the National Science Council (NSC 89-2314-B-320-017), NSC, Yun-Fang Tsai, PI.
6. Hsiung P, Tsai Y, Liang C, Shih C. Factors in psychiatric distress of patients with AIDS. Formosan J Med 2000;4:398–406.
8. Sangkard K, Ratanasombat S, Kimee S. Effect of supportive nursing care on life satisfaction and self care ability in HIV infected persons. Int Conf AIDS 1998;12:356. 9. Coene, EH, Fransen H, Vrij J. Self-care manuals for persons with HIV and AIDS in 10 countries of the European community. Int Conf AIDS 1996;11:180. 10. Lovejoy NC, Paul S, Freeman E, Christianson B. Potential correlates of self-care and symptom distress in homosexual/bisexual men who are HIV seropositive. Oncol Nursing Forum 1991;18:1175–1185. 11. Israelski D, Eversley R, Janjua S, Smith S. Race, HIV symptoms, recovery from drug abuse, and appointment adherence are associated with quality of life (QOL) among HIV infected women. 12th World AIDS Conference, Geneva, 1998. 12. Shively M, Gifford AL, Bormann JE, Timberlake DS, Bozzette SA. Developing symptom indices to assess health outcomes in persons with HIV/AIDS. 12th World AIDS Conference, Geneva, 1998. 13. Lubeck DP, Fries JF. Health status among persons infected with human immunodeficiency virus. A community-based study. Med Care 1993; 31: 269–276. 14. Valente S, Saunders JM, Uman G. Self-care, psychological distress, and HIV disease. J Assoc Nurses AIDS Care 1993; 4:15–25.
References
15. Mazonson PD, Lubeck D, Bennett C, Fifer S, Fries J. Quality-of-life among HIV patients with chronic diarrhea. Presented at the International Conference on AIDS, Amsterdam, July 1992. Poster Abstracts, 2, B178.
1. Fantoni M, Ricci F, Del Borgo C. Multicentre study on the prevalence of symptoms and symptomatic treatment in HIV infection. Central Italy PRESINT Group. J Palliative Care 1997;13:9–13.
16. Wachtel T, Piette J, Mor V, et al. Quality of life in persons with human immunodeficiency virus infection: measurement by the Medical Outcomes Study instrument. Annals Int Med 1992; 116:129–137.
2. Rosenfeld DVB, Breitbart W, Thaler H, et al. Symptom prevalence, characteristics, and distress in AIDS outpatients. J Pain Symptom Manage 1999;18: 253–262.
17. Ragsdale D, Morrow JR. Quality of life as a function of HIV classification. Nursing Res 1990;39: 355–359.
3. Reilly CA, Holzemer WL, Henry SB, Slaughter R, Portillo C. A comparison of patient and nurse ratings of human immunodeficiency virus-related signs and symptoms. Nursing Res 1997;6:318–323. 4. Atkinson JH, Grant I, Kennedy C, et al. Prevalence of psychiatric disorders among men infected with human immunodeficiency virus. Arch General Psychiatry 1988;45:859–864. 5. Chuang HT, Devins GM, Hunsley J, Gill MJ. Psychosocial distress and well-being among gay and bi-
18. Gebbie KM. A holistic look at the human immunodeficiency virus pandemic. Holistic Nursing Prac 1995;10:1–9. 19. Zeller JM, Swanson B, Cohen FL. Suggestions for clinical nursing research: Symptom management in AIDS patients. J Assoc Nurses AIDS Care 1993; 4:13–17. 20. Holzemer WL, Henry SB, Reilly CA. Slaughter RE. A comparison of persons with AIDS and nurse reports of symptoms. Proceedings of the Tenth International Conference on AIDS 1994: Yokohama, Japan, 338B/D.
Vol. 23 No. 4 April 2002
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21. Fontaine A, Larue F, Lassauniere J. Physicians’ recognition of the symptoms experienced by HIV patients: How reliable? J Pain Symptom Manage 1999; 13:263–270.
24. University of California, San Francisco School of Nursing Symptom Management Faculty Group. A model for symptom management. Image: J Nursing Scholarship 1994; 26:272–276.
22. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. J Am Med Assoc 1995; 273:59–65.
25. Health of Department. HIV/AIDS Prevalence 2000.
23. Hegyvary ST. Issues in outcomes research. J Nurs Quality Assur 1993; 5:1–6.
26. Palella FJ, Delaney KM, Moorman AC, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. N Engl J Med 1998; 338:853–860.