The Fatigue Experience for Women With Human Immunodeficiency Virus

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CLINICAL ISSUES

The Fatigue Experience for Women With Human Immunodeficiency Virus Kathryn A. Lee, RN, PhD, FAAN, Carmen]. Portillo, RN, PhD, Helen Miramontes, RN, M S N , FAAN

=Purpose: by

To examine fatigue as a symptom women with human immunodefi-

experienced ciency virus (HIV).

Sample: A convenience sample of 100 women with HIV.

Analysis: Independent sample t-tests were used to test for mean differences in fatigue related to variables in the women's sociocultural and home environment (ethnicity, employment, marital status, and parenting). Pearson product moment correlations were used to examine significant relationships between fatigue and physiologic variables (age, CD4 cell count, and sleep). Findings: Lower CD4 cell counts were related to more daytime sleep, higher evening fatigue, and higher morning fatigue. Morning fatigue was related to duration of wake episodes during the night, napping, and perception of sleep disturbance during the past week. The number of awakenings during the first night predicted the severity of fatigue the next evening. Conclusion: To understand the fatigue experienced by women with HIV, researchers and clinicians must focus on the relative contributions of sociocultural, home, and physiologic environments within which these women live. Additional research is ongoing to identify the strategies these women use to manage daily activities such that gender-relevant and culturally relevant interventions for alleviating fatigue can be tested in women with a variety of chronic illnesses, including HIV and acquired immune deficiency syndrome.

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28, 193-200; 1999.

Acceded: October 1998

MarchlApril1999

More than 100,000 women in the United States are infected with the human immunodeficiency virus (HIV).The number of female cases of acquired immune deficiency syndrome (AIDS)has risen at a rate nearly four times the rate for male cases (Centersfor Disease Control [CDC], 1995). In addition to the disproportionate increase among women, it has been documented that women who are poor, women of color, and women who use drugs are disproportionately affected by HIV/AIDS (CDC, 1995; Ellerbrock, Bush, Chamberland, & Oxtoby, 1991; Squire, 1993). In a recent study of patients with AIDS living in the Boston area, the most significant predictor of physical functioning was level of fatigue (Wilson & Cleary, 1996). Fatigue has been reported as a prominent symptom in men with HIV (Norman, Nay, & Cohn, 1988; Norman et al., 1992; Reilly, 1993; Tindall et al., 1988). Recent research indicates that women with AIDS are more likely to report fatigue (62%) than are men (49%) with AIDS (Breitbart, McDonald, Rosenfeld, Monkman, & Passik, 1998). The purpose of this study was to describe the severity of fatigue experienced by women with HIV and identify significant correlates of their fatigue. Variables from the sociocultural environment (ethnicity, employment status, income), the home environment (number of children, marital status), and the physiologic environment (age, CD4 cell count, and sleep fragmentation) were included to examine the effects on fatigue severity.

Conceptual Framework The proposed study was guided by Lee, Lentz, Taylor, Mitchell, and Woods' (1994) con-

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ceptual model of the demands and resources that influence fatigue placed within the context of McBride and McBride’s (198 1) theoretical framework for women’s health. Within this model and framework, a woman’s fatigue experience is influenced by her contextual environment, and her health problems cannot be examined without consideration of that context. For the purpose of this study, a woman’s health is conceptualized as a complex interaction between the resources and demands of her sociocultural, home, and physiologic environments. Women with HIV may experience fatigue differently from healthy women because of their immune deficiency, because of their life-style, or because of their lack of employment opportunities or income (Ballinger, 1985; Harris, Ellicott, & Holmes, 1986; O’Brien & Pheifer, 1993; Uphold & Susman, 1981).

Home Environment The home environment consists of the demands and resources women have in relation to being partnered with another adult (Verbugge, 1986; Welch & Booth, 1977), having children, and caregiving (Muller, 1986; Welch & Booth, 1977). In a community sample of 656 women, the level of self-reported fatigue was not associated with marital status or number and ages of children in the home; however, more hours spent parenting was associated with greater fatigue (Lee et al., 1994). The home environments of women with HIV have not been adequately described in the literature. Family structure may become unstable when women experience symptoms related to HIV (Semple et al., 1993), and family members experience a high level of symptom distress (McShane, Bumbalo, & Patsdaughter, 1994).

Physiologic Environment Sociocultural Environment The sociocultural environment contains both resources and demands. Resources inherent in being a paid employee have been found to be health promoting (Schuster, 1990); employment brings financial resources and expanded social networks (Verbugge, 1986; Woods, Dery, & Most, 1982). However, the demands of employment often preclude control over one’s work environment, and a lack of flexibility in work hours or arrangements for child care may limit time for family interactions (Chambers, 1986; Meleis, Norbeck, & Laffrey, 1989; Nathanson, 1980; Paringer, 1983; Waldron, 1980; Woods, 1985). In a community sample of 656 women, the level of self-reported fatigue was not associated with working full time or part time (Lee et al., 1994). The sociocultural environment of a woman with HIV often excludes full-time paid employment opportunities and results in low income and few financial resources. In a study of more than 400 men and women with AIDS, employment status was not assessed, but ethnicity, age, and years of education were not associated with fatigue (Breitbart et al., 1998).

W o m e n with HIV may experience fatigue differently from healthy women because of their immune deficiency, because of their lifestyle, or because of their lack of employment opportunities or income.

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Specific indicators of illness in the physiologic environment of individuals with HIV are associated with fatigue and include anemia, infection, and immune dysfunction (low CD4 cell count). These illness-related physiologic factors place demands on the individual such that fatigue is almost always a major symptom (Belza, 1995; Breitbart et al., 1998; O’Dell, Meighen, & Riggs, 1996; Schaefer, 1995). Although CD4 cell count has been associated with the fatigue experience in men with HIV in some studies (Darko, McCutchan, Kripke, Gillin, & Golshan, 1992; O’Dell et al., 1996), the exact physiologic mechanism by which fatigue occurs remains unknown, and other researchers have found no significant association between fatigue and CD4 cell count (Breitbart et al., 1998; Perkins et al., 1995). Antiretroviral medications (such as zidovudine) are thought to cause fatigue because of their toxic effect on skeletal muscle (Sinnwell et al., 1995). However, researchers have been unable to establish a relationship between medications and fatigue perception in patients with HIV/AIDS (Breitbart et al., 1998; Miller et al., 1991; Wilson & Cleary, 1996). Adequate sleep also is an important physiologic variable related to the experience of daytime fatigue. In a pilot study of 20 men with HIV, sleep and rest were more affected than were other aspects of health assessed with the Sickness Impact Profile (O’Dell et al., 1996).Walker, McGown, Jantos, and Anson (1997) found no relationship between fatigue and the amount of reported sleep in men with HIV. In contrast, Darko et al. (1992)reported that, on average, men with AIDS slept more (9 hours per night) than did a comparison group of healthy men (8 hours per night); 50% of men with AIDS took naps, whereas only 12% of the healthy men napped. Darko et al. also found significant differences in self-reported sleep disturbance and napping behavior between men with HIV and the healthy comparison group. However, Volume 28, Number 2

sleep disturbance and naps were analyzed dichotomously, as present or absent, and by self-report measures only. Compared with healthy men participating in electrophysiologic sleep studies, men infected with HIV (n = 14) had lighter sleep and more awakenings before any perception of symptoms (Norman et al., 1988, 1992).

Fatigue Symptom Experience Breitbart et al. (1998) surveyed 438 patients with AIDS (CD4 cell counts below 200/mm3) and found no relationship between their level of fatigue and time since diagnosis, use of antiretroviral medications, or CD4 cell count. Darko et al. (1992)reported a significant negative correlation between CD4 cell count and fatigue (r = -.19, p = .05) in 112 men with HIV who had a wider range in their CD4 cell counts than did persons with AIDS. However, the correlation was weak, and validity and reliability of the investigator-developed measure of fatigue was not reported (Darko et al., 1992).More than 50% of the 14 men with AIDS reported fatigue and said the fatigue interfered with daily activities, and approximately 20% ( n = 3) reported that fatigue was the reason they stopped working. Data about these men’s sociocultural or home environment were not presented. Despite methodological problems with a small sample size and self-report measures using investigator-developed instruments, Darko et al. provide important data to confirm clinical impressions of the fatigue experienced by men with HIV.

Design and Methods Sample A cross-sectional, descriptive design was used to describe the multifaceted environment of a convenience sample of 100 ethnically diverse women with HIV. Women were recruited from four agencies that primarily provide care for Medi-Cal/Medicaid clients in northern California. To be included in the study, women had to be: 1)18 years of age or older, 2) able to understand and sign an English consent form, and 3) seropositive for HIV. For the purpose of this study, women were excluded if there was: 1)a confirmed AIDS dementia diagnosis, 2) moderate (Grade 11) neuropathy, 3) a hospital admission within the past week, 4) pregnancy or lactation during the last 6 months, or 5) current use of illicit substances. It has been found that patients with Grade I1 neuropathy often are taking medications that confound the validity of findings and the reliability of measures of interest. A hospital admission within the past week also would affect validity of the patient responses because the timeframe overlaps with instruments that ask for data about the past week. One mode of HIV transmission is through intravenous drug use; some subjects were enrolled in drug treatment programs, but none were curMarchlApril1999

rently using substances. Medications in use by study participants included antiretroviral (45%), antianxiety and antidepressants (11%), antibacterial and antifungal (8%0),and multivitamins and mineral supplements (8%).

Procedures During a clinic visit, potential participants who met the inclusion and exclusion criteria were accessed through their health care provider. Potential participants were presented with the details of the study. After choosing to participate and giving informed consent, these women wore a motion sensor (wrist actigraph) to monitor sleep and activity continuously for the next 2 days. In addition, they completed a 2-day diary that included sleep and wake times, meal and exercise times, medications, and any symptom or stressful situation experienced during the day. The most recent CD4 cell count, lymphocyte count, hemoglobin level, and albumin level were obtained from their clinic record. Standardized instruments were administered by a member of the research team in a private area within the clinic setting or at a mutually agreed upon location. These instruments took approximately 30 minutes to complete. At the end of 48 hours, the wrist actigraph and 2-day diary were collected, and the subject was paid $25.00 in cash for her participation.

Variables and Instruments The complex environment of these women was assessed in three dimensions. The sociocultural environment was operationalized as ethnicity (African American, European American, or Hispanic American), employment status (unemployed, part-time employment, or full-time employment), and family net income. The home environment included marital status and number of children in the home. The physiologic environment included the woman’s age, her medical record’s most current CD4 cell count, and the average hours of sleep during the night and average number of awakenings during the night assessed with noninvasive monitoring for 2 consecutive nights using a wrist motion sensor (Mini Motionlogger Actigraph, AAM-32 Ambulatory Monitoring, Inc., Ardsley, NY). This wrist-actigraph has been validated with electroencephalogram measures of sleep and awakenings on men and women and on healthy and disturbed sleepers (Hauri & Wisbey, 1992; Walsh et al., 1991). Their average sleep disturbance for the 2 nights was obtained by a sleep efficiency index (ratio of time actually sleeping to time trying to sleep). Nap time was described as a daytime sleep period and was not included in the total sleep time. These three dimensions of environment are hypothesized to influence symptom experience. Symptom experience was confined to subjective reports of percep-

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tion of sleep disturbance during the past week and perception of fatigue severity. The perception of sleep disturbance was assessed with the General Sleep Disturbance Scale (GSDS), consisting of 21 items rating aspects of sleep quality and quantity during the past week using eight-point Likert-type scales ranging from 0 (not at all) to 7 (every day). Scores can range from 0 to 147, and three items are reverse-coded. The GSDS has established internal consistency reliability (Cronbach's alpha coefficient = .88), and validity was established in female shiftworkers, of whom night and rotating workers reported significantly higher disturbance scores (56.6 2 18.4) than did permanent day and evening (47.3 2 13.8) workers (Lee, 1992). Cronbach's alpha coefficient for this current HIV seropositive sample was .SO, and GSDS scores reflecting the past week were inversely correlated (r = -.27) with the objective 2-day measure of sleep efficiency ( p = .03). Perception of fatigue severity was measured with the Visual Analogue Scale-Fatigue (VAS-F),consisting of 13 100-mm visual analog lines with adjectives related to fatigue and five lines with adjectives related to energy. It has established validity and reliability (Cronbach alpha coefficients > .90) in healthy persons, patients with sleep disorders (Lee, Hicks, & Nino-Murcia, 1991), in sleepdeprived subjects (Morris, So, Lee, Lash, & Becker, 1992),and in women with chronic fatigue syndrome and fibromyalgia (Schaefer, 1995). The level of perceived fatigue was assessed twice a day: at bedtime and in the morning upon awakening. The instrument takes less than 1 minute to complete, and scores can range from 0 to 100 mm. This instrument has established concurrent validity with the Profile of Mood States (POMS) subscale for fatigue (r = .78) and vigor (r = -.73). The VAS-F was not statistically associated (r = .22) with the POMS subscales for depression and anxiety, thus indicating divergent validity for fatigue compared with emotional symptoms. The Cronbach alpha coefficients for morning and evening fatigue in this current sample of women with HIV were .92 and .91, respectively.

Data Analyses Independent, unpaired t-tests were used to test for significant differences in fatigue severity between employed and unemployed women, between partnered and unpartnered women, between those with children and those without, and between ethnic groups (African American, European American, and Hispanic American). In addition to group comparisons, Pearson product moment correlation coefficients were used to test the significance of bivariate relationships between the dependent outcome variable of fatigue severity in the evening and morning, and the continuous predictor variables that included age, CD4 cell count, average total sleep time during the night, average number of awaken196 JOG"

ings, sleep efficiency, perception of sleep disturbance in the past week, number of children in the home, and net family annual income. Finally, two multiple regression analyses were conducted to assess the relative contribution of the sociocultural, home, and physiologic environments, with evening and morning fatigue severity as the two dependent variables.

Results Sociocultural Environment The convenience sample of 100 women in this study reflects the ethnic makeup of those with HIV in the San Francisco Bay area. There were 59 African American women, 27 European American women, and 14 Englishspeaking Hispanic American women. Most were unemployed (82%) but reported doing some volunteer work. Most (60%) were high school educated; eight women had completed college, and five women had not completed grade school. Most (73%) reported a net family annual income of less than $10,000; four women reported a net family annual income of more than $25,000.

Home Environment There were 39 married or partnered women and 61 single, separated, divorced, or widowed women. Thirty women had children living with them.

Physiologic Environment The women ranged in age from 20 to 66 years old, with a mean age of 38.3 2 7.8 years. Time since diagnosis of HIV disease ranged from 3 months to 11years. The most recent serum laboratory result for CD4 cell counts revealed a range of 4 to 974, with a mean of 339 2 241; 35% had a CD4 cell count below 200/mm3. Average total sleep time for the 2 nights ranged from 31 minutes to 10 hours, with a mean of 6.5 2 1.95 hours. The average number of awakenings for the two nights recorded by actigraphy ranged from 1.0 to 49.5, with a mean of 18.8 2 10.1. The range of self-reported awakenings was much smaller (1to 8 ) and did not correlate with the objective findings. When actual sleep time during the night was calculated as a percentage of the time spent in bed with the lights out trying to sleep, sleep efficiency ranged from 6.5% to 97%, with a mean of 74.6% ? 17.9%. Fifty-two women napped for more than 20 minutes during the day.

Symptom Experience As a group, subjective sleep disturbance was evident, with a mean GSDS score of 65.3 2 22.7. Evening fatigue averaged 49.7 mm t 20.1 mm (median, 41 mm), and fatigue improved in the morning to an average of 32.9 mm +- 20.9 mm (median, 31 mm). Thirteen women Volume 28, Number 2

TABLE 1

Evening and Morning Fatigue Severity by Demographic Variables (n = ZOO)

DemographicVariable Evening Ethnicity African American (n = 59) European American (n = 27) Hispanic American (n = 14) Family status Partnered (n = 39) Not partnered (n = 61) Children in home ( n = 30) N o children (n = 70) Employment Not employed (n = 82) Part-time or full-time (n = 18) Daytime nap N o nap (n = 48) Nap >20 minutes (n = 52)

Fatigue Morning

T h e women without children 46.1 2 20.4

33.2 2 21.8

60.0 2 17.7,

36.0 2 21.6

43.4 2 16.3

25.7 2 14.2

54.1 2 19.8 46.4 2 19.9

34.8 2 23.8 31.6 2 18.9

46.7 2 21.1

37.6 2 18.3t

51.4 2 19.8

30.8 2 22.1

47.8 2 19.8

33.8 2 21.1

57.3 2 20.2

29.2 2 20.3

50.5 2 25.4 49.7 2 23.8

27.7 2 20.5 38.4 2 20.4$

Significantly higher (F,,99 = 6.03, p = .003) than the other two ethnic groups. t Higher (Mann Whimey U 1.79, p = .07) than women without children. $ Significantly higher (t = 2.52, p = .013) than those not taking a nap.

had morning fatigue scores more than 10 mm higher than their evening scores; 27 women had morning fatigue scores within 10 mm of their evening scores; and 58 had improved fatigue scores in the morning. The European American group perceived significantly higher fatigue than did the African American or Hispanic American group (see Table 1).There were no significant differences in morning or evening fatigue between women with children and women without children living in the home. However, the women without children had more improvement in their fatigue after a night's sleep than did the women with children (t = 2.8, p = .006). Evening fatigue was significantly higher (t = 1.96, p = .05) in the women who were employed than in the women who were unemployed, but there was no difference between the groups for morning fatigue. Partnered women perceived higher evening fatigue than did MarchlAprill999

unpartnered women, but the difference did not reach statistical significance (t = 1.90, p = .06). There was no significant bivariate correlation between income and fatigue in the morning (r = . l o ) or evening (r = .17).

had more

improvement in their fatigue after a night's sleep than

did the women with children.

Fatigue severity was negatively related to CD4 cell count, such that the lower the CD4 cell count, the higher the fatigue in the evening (r = -.37, p = .01) and morning (r = -.24, p = .037). Fatigue in the morning was related to increased amount of sleep obtained during that day (r = .22, p = .035)and subjective sleep disturbance during the past week (r = .37, p = .01). The number of awakenings during the first night was predictive of fatigue severity the following evening (r = .27, p = .008). The difference between evening and morning fatigue was correlated with sleep efficiency, such that the better the sleep efficiency, the more improvement in fatigue in the morning from the prior night (r = .26, p = .01). Compared with those who did not nap, women who napped during the day had significantly higher fatigue scores in the morning before the nap and lower fatigue in the evening after the nap, but the improvement in evening fatigue was not statistically significant (see Table 1). In a multiple regression analysis, 51% of the variance (F = 5.0, p = .0006) in evening fatigue was explained by higher income and European American eth, CD4 cell count (14%),and perception nicity ( ~ O ' Y O )low of more disturbed sleep during the past week (7%).CD4 cell counts, income, and ethnicity accounted for none of the variance in morning fatigue, whereas parenting (7%) and daytime nap (11 %) accounted for 18'Yo of the variance in morning fatigue (F = 4.8, p = .005).

Conclusions This sample of women with HIV reflects the demographic profile of women with HIV in California. The range of infection severity, as assessed by CD4 cell count, is representative of the population of persons with HIV in the United States. None of these women were taking protease inhibitors when the study was conducted. Whether this was because of a lack of resources or lack of information from their health care provider remains unknown. As a group, these women perceived high levels

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of fatigue unrelieved by a night of sleep. Because they also perceived high sleep disturbance, and sleep disturbance was evident by minimally invasive procedures to monitor sleep, the high level of fatigue in the evening and morning is not a surprising finding. By self-report, the participants’ sleep was more disturbed than that of women who work nights or those who rotate between day and night shifts (Lee, 1992) and similar to that reported for women with chronic fatigue syndrome in Schaefer’s (1995) study. Although their perception of fatigue was less severe than that reported by women during their ninth month of pregnancy, it was comparable to women’s morning fatigue during the seventh month of pregnancy (Elek, Hudson, & Fleck, 1997). Factors in the sociocultural (ethnicity, income, employment) and home (adult partner, parenting) environments of women with HIV had more influence on their experience of fatigue than did their CD4 cell count or sleep patterns. The extent to which paid employment influenced their experience of fatigue was difficult to assess in this cross-sectional study design, when only 20% were currently employed. With income often confounded by gender, employment, ethnicity, and marital status, the multivariate analysis would suggest that it is upper income European Americans who perceive higher fatigue, rather than employed or partnered women per se. Without longitudinal data, it is unclear whether being employed leads to higher fatigue or whether unemployment resulted from fatigue. The number of women with HIV in the paid work force remains unknown. The number of women with HIV who are single parents and totally responsible for home environments that include parenting and other forms of caregiving, as well as household chores, is unknown. Of interest was the finding that most of the women in this study were not partnered and not parenting. Women who were partnered had higher evening fatigue scores than did single women, but women who were parenting had higher morning fatigue scores than did women without children. The multivariate analysis would suggest that being partnered is confounded by parenting and that parenting influences morning fatigue. Again, it is difficult to draw conclusions from this cross-sectional study. A major limitation of this study was the lack of randomized selection of participants from outpatient clinic settings. Results from this convenience sample of women living in the San Francisco Bay area would be difficult to generalize to the larger population of all women with HIV. However, establishing significant correlates of fatigue will allow for the development and testing of possible interventions based on empirical data that are relevant to women with HIV.

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F a c t o r s in the sociocultural and home environments of women with HIV

had more

influence on their experience of fatigue than

did their CD4 cell count or sleep

patterns.

Implications for Women’s Health Care Providers Nurses care for people with HIV at many points in the health care system (Bradley-Springer, Schwanberg, & Frank, 1994).The current and future health problems for someone with HIV primarily involve fever, anemia, pain, infection, depression, and disturbed sleep cycles associated with immune dysfunction. In addition, medications used in the treatment of HIV often produce adverse side effects, such as nausea, vomiting, and diarrhea. These side effects also can exacerbate a patient’s experience of fatigue and force curtailment of daily activities that include both paid and unpaid work. As a clinician, it would first be useful to ascertain the woman’s diurnal pattern of fatigue. If there is no evidence of a sleep disorder (such as sleep apnea, myoclonus, or esophageal reflex), and the woman’s fatigue is not improved by a restful night’s sleep, research suggests that depression may be a likely diagnosis (Breitbart et al., 1998; O’Dell et al., 1996; Perkins et al., 1995). If fatigue is the symptom of concern, women may find a nap beneficial. Women in this study were more likely to nap as a result of feeling fatigued in the morning after a poor night’s sleep, and some women’s evening fatigue levels were lower after the nap. The effects of a formal low-impact exercise program in reducing fatigue have not been studied in women with HIV. However, exercise has been shown to reduce fatigue in some patient populations and may be more beneficial in enhancing deep sleep and a sense of wellbeing than are naps, which could adversely affect that night’s sleep. Results from this study indicate that clinicians caring for women with HIV who report fatigue should not attribute the symptom entirely to physiologic factors such as CD4 cell counts or poor sleep. Once anemia, infections, and sleep disorders are excluded as the cause of fatigue, the clinician should consider aspects of sociocultural and home environments when planning care or interventions to reduce fatigue for women with HIV. In summary, women’s health involves the interaction of a multidimensional environment, the experience of symptoms related or unrelated to an illness, and reVolume 28, Number 2

sponses to the symptoms. Most of what is known about women’s health is based on middle-class European American women using a biomedical framework and ignoring the environmental influences. Most of what is known about HIV and fatigue also is based on a biomedical framework and ignores sociocultural and home environmental influences. A woman’s experience with HIV/AIDS and perception of fatigue must be considered within the context of her complex environment. To understand women’s symptom experiences and responses to these symptoms, research must focus on the relative contributions of the sociocultural, home, and physiologic environments within which these women live.

Acknowledgment This research was supported by The National Institute of Nursing Research (NINR)R01 NR03969.

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Kath ryn A. Lee is a Professor and Livingston Chair in the School of Nursing at the University of California, Sun Francisco in Sun Francisco, CA. Carmen J. Portillo is an Associate Professor in the School of Nursing at the University of California, Sun Francisco in Sun Francisco, CA. Helen Miramontes is an Associate Clinical Professor in the School of Nursing at the University of California, Sun Francisco in Sun Francisco, CA. Address for correspondence: Kathryn A. Lee, PhD, RN,Box 0606, Room N411 Y, School of Nursing, University of California, Sun Francisco, Sun Francisco, CA 94143-0606.

Volume 28, Number 2