Perceived uncertainty about menopause in women attending an educational program

Perceived uncertainty about menopause in women attending an educational program

/,rr .I IVW,. Std.. Vol. 32. No I, pp iY 48, 1995 CopyrIght c 1995 Elaevm Suence Ltd Prmted ,n Great Br~tam All rights rescncd OO20-7489,95 $9.50+0 00...

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/,rr .I IVW,. Std.. Vol. 32. No I, pp iY 48, 1995 CopyrIght c 1995 Elaevm Suence Ltd Prmted ,n Great Br~tam All rights rescncd OO20-7489,95 $9.50+0 00

Pergamon 0020-7489(94)00028-X

Perceived uncertainty about menopause in women attending an educational program GAIL Doctoral Cwtrr.

SCHOEN Student, School Greater Baltirnow

ELIZABETH Profti.ssor, Research.

LEMAIRE, qf Nursing, Medical

R. LENZ,

M.S.N., R.N., C.S.

Unicrisity qf’Maryland at Baltimore, Center, Baltimore, Mayland, U.S. A.

Director,

Women’.~

Re~ourcr

Ph.D., F.A.A.N.

Pmns~fvania State Unhwsit,v, School of Nursing and Senior Milton S. Hershq~ Medical Center, Hershe!,, Puw.y~lwmia,

Researc,her, U.S..4.

Center

for Nursing

purpose of this study was to identify predictors of uncertainty among a convenience sampleof 177 women attending an educational program on menopause and to determine whether an educational intervention modified uncertainty. A one group pre-test post-test design was used. Uncertainty, measured by the Mishel Uncertainty in Illness Scale-Community Form (MUISC), was relatively high before, and decreased significantly after, the program. Findings indicated that uncertainty is an important phenomenon associated with menopause. Predictors of pre-program uncertainty (TI) were age and perceived level of knowledge. Post-program uncertainty (T2)was predicted by preprogram uncertainty (T,)r perceived knowledge gained and level of knowledge at (.r2). Abstract-The

Introduction

With the aging of the “baby boomer” generation, menopause, a normal part of women’s aging process, has become a topic of increased interest. The physiological mechanismsof the menstrual cycle and menopauseare relatively well understood; however, physiological and emotional responsesto the hormonal fluctuations accompanying menopause are only beginning to receive empirical attention. Evidence is accruing in scientific as well as lay literature that there is dissonance between women’s perceptions of menopause and those 39

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G. S. LEMAIRE

and E. R. LENZ

of physicians, their primary care-givers (Dickson, 1991; Mansfield and Boyer, 1991, McKeever, 1991). Considerable variation exists in the way women experience menopause, the meaning it has for them, and their responsesto it. Testimony for women’s need for knowledge and understanding about menopause is apparent from the rapidly expanding body of scientific and lay literature (Cooksey et uf., 1991; Cutler and Garcia, 1992; Dickson, 1991; Engel, 1987; Duffy, 1988; Estok and O’Toole, 1991; Greenwood, 1989; Kahn and Holt, 1989; Mansfield and Boyer, 1991; Perry and O’Hanlan, 1992; Sheehy, 1991; Utian and Jacobowitz, 1990). In an early study, LaRocco and Polit (1980) found that women had a moderate level of knowledge about menopauseand were most concerned about not knowing what to expect. There is also evidence that women lack accurate and complete knowledge about the indicators of the approach and onset of menopause, and as a result are uncertain about why they are experiencing physical and emotional changes,not necessarilyassociating them with menopause (Millette, 1981). Information is generally obtained from lay relatives, friends and the popular literature, and is heavily influenced by the biomedical, diseaseoriented perspective. Much of women’s information seeking about menopause is undertaken in order to help them clarify ambiguous symptoms and determine whether their experiences are “normal” (Cooksey et al., 1991). They are often confused by conflicting conceptions of menopause and uncertain about how to behave in the face of inconsistent recommendations about how to manage or mitigate the effects of changesthey are currently or anticipate experiencing. In the nursing literature the concept of uncertainty has been used most often in an illness context. Mishel(1984) has defined uncertainty as the inability to cognitively determine, due to lack of sufficient cues, the meaning of events associated with illness. Current nursing conceptions have tended to reject the illness-oriented view of menopause and have conceptualized it as a complex, multifaceted, developmental process (Dickson, 1990; Macpherson, 1990; Siegal, 1990; Voda and George, 1986). Changes and experiencesassociated with menopauseare sufficiently variable and unpredictable to render uncertainty a potentially salient factor for understanding women’s perimenopausal and post-menopausal experiencesand improving their health. Variable symptoms, patterns and events associated with the process of menopause, along with conflicting views and information presented by health care providers and others, may foster ambiguity, inadequate knowledge and lack of predictability associated with uncertainty. Despite extensive documentation that it is an aversive experience associatedwith emotional distressand difficulties with adjustment and relationships (Hilton, 1989; Loveys and Klaich, 1990; Mishel, 1984; Mishel and Braden, 1987; Mishel and Braden, 1988; Mishel et al., 1984) uncertainty in relation to menopause has not been studied systematically. The present study was undertaken in order to: (1) describe the level of uncertainty among midlife women attending an educational program about menopause,(2) identify correlates of uncertainty, and (3) compare level of uncertainty before and following the educational program. Theoretical

Framework

The theoretical framework for the study was provided by the middle-range Uncertainty in Illness Theory of Mishel(198 1, 1984, 1988). This theory provides an explanation for the cognitive processingand construction of meaning in illnessand related events. Even though menopausewasconceptualized asa normal process,the theory was believed to be potentially

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41

applicable, because of the high degree of ambiguity and variability associated with it. According to the theory, perception of an event or series of events involves a subjective interpretation within the context of a cognitive schema of illness-related (or in the case of menopause, normal change-related) situations, treatment and hospitalization. Uncertainty results from ambiguity and complexity in the symptoms, events or situations being experienced, inadequate information or unclear outcome. Several elements of the theory are asserted to be predictors of the degree of uncertainty experienced. The stimuli frame represents the form, structure and composition of the perceived stimuli. Components of the stimuli frame (symptom pattern, event familiarity and event congruence) provide the stimuli which are structured to form the cognitive schema. The more clearly patterned, predictable, familiar and congruent the stimuli (e.g. symptoms, events), the less the uncertainty experienced. Cognitive capacity (namely, cognitive impairment and inability to process information) affects negatively the ability to perceive and understand stimuli, hence increasing uncertainty. The third major component of the theory. structure providers (including educational level, social support and credible authority) are viewed as having the capacity to reduce uncertainty both directly and indirectly. Applying the components of the theory to the situation of menopause, the stimuli would include the indicators or “symptoms” that menopause is approaching, for example, hot flashes. mood and behavior changes, thinning and drying of skin, fatigue. changes in memory, loss of libido, and irregularity in the menstrual cycle. Women whose symptom pattern is highly ambiguous, vague, variable and unpredictable would be predicted to have high uncertainty. Higher levels of education, social support, and level of information about menopause and the receipt of information from sources they deem credible and authoritative are predicted to be associated with low uncertainty. By extension, the receipt of an educational intervention in which a credible authority (health care provider) provides factual information about menopause and related changes, should result indirectly in decreased uncertainty, because it supplies structure to increase event familiarity and because information from a credible authority has a direct effect on uncertainty as well. Research Questions

1. What is the level of uncertainty about menopause among women before and after an educational program? 3. To what extent do women’s level of actual knowledge and their perceived level of knowledge about menopausechange after attending an educational program? 3. To what extent are women’s actual and perceived levels of knowledge about menopause related‘? 4. To what extent is variance in women’s perceived uncertainty about menopause explained by the variables of age, educational level, perceived level of knowledge and level of actual knowledge? Method

The sample was a convenience sample of women attending an educational program on menopause and midlife health at a suburban medical center. Of the 190 women who attended, 177 agreed to participate.

42

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and E. R. LENZ

The modal pattern was that the sample was middle-aged, married, with some college education and a relatively high household income. Subjects ranged in age from 30 to 71 years (M = 50, SD = 5), and the number of years of schooling completed ranged from IO to 20 or more (M = 15, SD = 2.7). The majority of women (72.9%) were married, and nearly half (45%) reported a family income of $60,000 or more. One-quarter reported family income between $26,000 and $40,000, and 23% reported family income of $41,00059,000. The majority of subjects (55%) reported that they were still having menstrual periods. Estrogen replacement therapy was being received by 28% of the subjects, and progesterone by 18%. Only 17% of the subjects reported taking both estrogen and progesterone, the regimen currently recommended by most physicians. It is important to note that since the subjects were recruited from a group of women who paid to attend an educational program, the sample may well be biased in the direction of a high level of interest in menopause. More than half (52%) of the subjects indicated that menopause or its approach was not difficult for them, while 36% reported difficulty. The measure of subjects’ perception of their need for information indicated that 57% thought that they did not have the information they needed about menopause, while 24% indicated that they were unsure. and only 16% thought they already possessed the information they needed. Instrumentation Information about the demographic variables, medication (hormone) patterns, and perceptions about menstrual periods and the need for information was gathered by means of a Background Information Questionnaire. Level of perceived uncertainty was measured by an adaptation of the 23-item, one-factor community version of the Mishel Uncertainty in lllness Scale-Community Form (MUISC) (Mishel, 1990). The scale (renamed “Menopause Experience Scale”), was modified based on a conception of menopause as a normal process. In 9 of the items, terms such as illness, diagnosis and treatment were replaced by more appropriate terminology, for example, menopause, symptoms and therapy. The items otherwise remained parallel to those in the MUIS-C. The MUISC employs a 5-point Likert-type scale ranging from strongly disagree (1) to strongly agree (5). Scores can range from 23 to 115, with higher scores reflecting higher uncertainty. Normative data for the scale have been derived from eight samples. The resulting reliability was in “the moderate to high range (r = 0.7550.90)” (p. 6). The alpha reliability for the MUIS-C in the study sample was 0.90. Evidence for concurrent validity of the scale as a measure of uncertainty was that the uncertainty score was significantly higher among subjects who perceived that they did not have the information they needed about menopause (M = 65.82) than among those indicating that they did (M = 58.37) (FZ,,hh = 3.98, p < 0.02). Level of actual knowledge about menopause was measured by a short (5-item), authordeveloped, true-false test consisting of questions addressing the definition and selected aspects of menopause and related health issues: symptom variability, hormone replacement therapy, urinary incontinence and osteoporosis. The test was limited in scope, in that four items related to symptoms of menopause and one related to a frequently used treatment modality. The test was designed as a pre- and post-program assessment of lay persons’

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knowledge about aspects of menopause that are within the scope of general knowledge; therefore, the level of item difficulty was low. Perception of knowledge before and after the program, respectively, was measured by responses to the following statements: “I knew a great deal about the topic prior to the program” and “I have gained useful information about the topic”. These statements were scored on a Likert-type scale ranging from strongly disagree (1) to strongly agree (5). Des@

and procedure

A one-group pre-test post-test design was used to assess knowledge, perceived knowledge and perceived level of uncertainty before and following an educational program about menopause. At the beginning of the program, subjects were asked to complete the instruments. Then, following the program they completed the uncertainty and actual knowledge measures. and responded to the item assessing perceived gain in information as a result of the program. A distinct limitation of the one-group pre-test post-test design is that lack of a control group does not allow inferences that pre- to post-intervention changes are attributable solely to the intervention. The educational program, taught by a clinical nurse specialist, gynecologist, reproductive endocrinologist, endocrinologist and general surgeon, provided information on the physiology of menopause, benefits and risks of hormone replacement therapy, breast cancer and osteoporosis risk, detection and treatment. and causes and treatment of urinary incontinence. Content was provided in a lecture style format, followed by a question and answer period. Results

Pw- wd post-in tewen tion Ienelsqf’uncertuin tJ The average level of uncertainty about menopause for 173 subjects at the outset of the educational program was 63.37 (SD = 13.82; range = 28-97) and following the program was 54.89 (SD = 12.9, range = 23-96) for 150 subjects. A z-test for paired samples (N = 148). revealed the decrease in uncertainty to be statistically significant (t = 1I .l 1. p < 0.0005). When compared with Mishel’s (1990) data from norming samples.the present sampleof women reported a higher level of uncertainty prior to the program than did some of the previously studied ill subject groups. Uncertainty related to lack of information was a problem for many in this sample. On the pre-program Menopause Experience Scale, 72% indicated that they had a lot of questions without answersabout menopauseand 61% indicated that the explanations they had received about menopause were hazy to them. Sixty-eight per cent were undecided or unclear about the purpose of hormone replacement therapy. More than half of the sample (60%) indicated that health-care providers did not use everyday language to help them understand. Many women were concerned about what the future might hold, in that 65% were unclear about how bad their symptoms would be and 54% indicated that it was not clear what was going to happen to them. PVC-md post-intervention levels qf‘knmz~le&e Average scores on the 5-item true-false test of actual knowledge about menopause for 147 subjects increased from before (M = 4.16, SD = 0.88) to following (M = 4.45,

44

G. S. LEMAIRE

and E. R. LENZ

SD = 0.59) the educational program. The differences were significant, as revealed by the ttest for paired samples(t = -3.85, p < 0.0005). The question most frequently answered incorrectly related to whether urinary incontinence is a normal aspect of the aging process. Approximately half of the subjects who answered the question gave an incorrect response on the pre-test (48.3%). This high error rate contrasts with the other questions which were answered correctly by most subjects (percentage of correct responsesranged from 80.5 to 98.7%). It should be noted that the high rate of correct responsesfor the measure as a whole suggeststhat it lacked sensitivity for measuring change resulting from the educational program, that is, there was little room for pre- to post-program improvement. Mean scores for subjects’ perceptions of their level of knowledge before the program, rated on a 5-point scale, was 2.9, and their post-program perception of knowledge gained was 4.4 on a 5-point scale. Subjects, on the average, perceived that they had a moderate amount of knowledge before the program and that they had gained substantial knowledge as a result of it. However, as shown in Table 1, perceived knowledge at the outset of the program was unrelated to scoreson the pre-program test of actual knowledge (r = 0.10). Perceived knowledge before and perceived knowledge gained after the program were unrelated (r = 0.06) but actual knowledge scoresat the two time periods were related. Perceived knowledge gained was unrelated to scoreson the post-test of actual knowledge (r = 0.01). Predictors qf uncertainty In order to determine which variables were predictors of the level of uncertainty prior to the program. a hierarchical multiple regressionanalysis was performed with uncertainty as the dependent variable. Age and level of education were force-entered as a block, followed by perceived level of knowledge and the score on the actual knowledge scale. The results are shown in Table 2. The total set of predictors explained 17.84% of the variance in uncertainty. The strongest relationship was with age, followed by perceived level of knowledge. Uncertainty was highest among younger women and those whose perceived level of knowledge was low. Neither level of education nor level of actual knowledge predicted uncertainty prior to the educational program. Predictors of uncertainty following the educational program were assessedusing a hierarchical multiple regression with the post-program uncertainty level dependent. Age and education were entered first as control variables followed by the pre-educational program levels of actual knowledge and perceived knowledge. The pre-program level of uncertainty was then entered, and finally the post-program levels of actual knowledge and perceived knowledge gained as a result of the program were entered. As shown in Table 3, age, education, perceived pre-program knowledge and pre-program actual knowledge were unrelated to post-program uncertainty. The strongest predictor was pre-program uncertainty which explained 49.06% of the variance in uncertainty after the program. However, an additional 5.1O/oof the variance in the dependent variable was explained by postprogram level of actual knowledge and perceived knowledge gain. Higher levels of preprogram uncertainty, lessperceived knowledge gain and lower levels of post-program actual knowledge were associatedwith higher post-program uncertainty. Discussion

Although uncertainty has not previously been examined as an aspect of menopause, the present findings underscore its importance. Levels of uncertainty about this normal life

*p < 0.01; tp < 0.001. : Listwise

Uncertainty,, We) Uncertainty,? (Post) Actual knowledge Testrl (Pre) Actual knowledge Test,2 (Post)

(Postj

Age Education Perceived knowledge (PreJ i(ndwledge gamed

subjects

with missing

I .oo

-0.14

0.32t -0.18* -0.31*

Uncert, (W

,

(N = 140):

data on any of the variables.

1.00

0.04 -0.03 - 0.06

variables

0.33.f 0.14 1.00

study

Knowledge gained (Post)

among

Perceived knowledge (Pre)

I. Correlations

was used to exclude

0.06 1.00

1.00

deletion

Education

Age

Table Actual

0.00

1.00

1.00

0.06

0.69t

0.01

0.17 0.10

-0.25t

0.05

-0.12 -0.17

knowledge

-0.14

Uncert T, (Post)

test,,

Actual knowledge test,, -. -0.01 -0.03 0.08

3 2 ay :

c:

46

G. S. LEMAIRE

Table 2. Regression

of pre-program

Step

Variable

1 2 3 4

Education Age Actual knowledge Perceived knowledge

rrnd E. R. LEN2

uncertainty on age. education. perceived a sample of mid-life women (N = 150)

knowledge

R

R’

R’ Change

0.351

0.123

0.123:

0.422

0.178

0.055t

and actual knowledge

Final

m

step beta

~ 0.095 - 0.236? -0.027 -0.248t

tp < 0.01: :p < 0.001

Table 3. Regression pre-program

of past program uncertamtyT,,

Step

Variable

I 2 3 4 5 6 7

Education Age Actual knowledge,, Perceived knowledge,, Pre-program uncertainty,, Knowledge gained,, Actual knowledge,:

uncertainty on age, education, perceived knowledge,,. actual knowledge at TL and perceived gain in knowledge R

R’

R’ Change

0.183

0.034

0.034

0.239 0.700

0.057 0.491;

0.024 0.434:

0.736

0.542:

0.052t

actual knowledge,,, (N = 131) Final

step beta

-0.017 0.106 0.114 0.005 0.6891 -0.190; -0.141+

tp < 0.01; :/, < 0.001.

process were high, exceeding those discerned by Mishel and her colleagues in several studies of ill individuals using parallel instruments. The level of uncertainty may be inflated in the present, well educated, middle to upper-middle-class sample of subjects who had actively sought information about menopause by attending the educational program. Perceived inadequacy in their present level of understanding or in the information they had already received, and, therefore, perceived uncertainty may have prompted women to attend the formal educational program. Responses to specific items in the uncertainty scale suggested that uncertainty is attributable not only to the inconsistency and unpredictability of present and anticipated symptoms of menopause, but also to the lack of clarity and comprehensibility of information received from health-care providers. These findings are understandable, given previously cited evidence that family, friends and the popular media most often are the sources of answers to women’s questions about the experience of menopause (Cooksey et ul., 1991; Mansfield and Boyer, 1991). Only recently have the multiple dimensions of menopause been studied with sufficient detail and from the kind of integrative perspective necessary to allow healthcare providers to address women’s concerns from an empirical base. Mishel’s Theory of Uncertainty in Illness was used to identify potential predictors of uncertainty about menopause among midlife women. Although some aspects of the theory are not appropriate because menopause is a normal life experience, rather than a pathological state, several of the elements included in the theory proved to be predictive of uncertainty surrounding menopause. Because no specific information about symptom patterns was gathered, there was no direct measure of the symptom frame component. However, age can be considered a proxy indicator, in that older women would be more likely than their younger counterparts to have increased familiarity with the events and symptoms surrounding menopause, and would have progressed through the highly variable

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perimenopausal phase to a more stable symptom pattern. Correspondingly, younger women reported higher levels of uncertainty about menopause prior to the educational program. According to Mishel (1988), the structure providers of education and information from credible authorities are both directly and indirectly related to uncertainty and, according to the model, should decrease it. Conversely, lack of information should be associated with higher uncertainty. In the present sample educational level did not predict uncertainty, perhaps because the sample was relatively homogeneous and well educated. Consistent with the theory, perceived lack of information predicted higher uncertainty both prior to and after the program. Information from a credible authority, provided in the educational program, was theorized to reduce uncertainty both directly and indirectly by increasing event familiarity. Consistent with the theory, uncertainty declined following the delivery of factual information in the program. Even with the pre-program level of uncertainty controlled, level of post-program actual knowledge and perceived knowledge gained as a result of the program, were associated with lower post-program uncertainty. In addition to supporting the efficacy of formal instruction for reducing uncertainty (at least in the short term), these findings suggest that more distal structure providers, such as age and pre-instruction perceptions. may decline in importance as new information stimulates reconceptualization of the context in which symptoms and events are interpreted. The duration of the effects of educational programs delivered by credible authorities need to be ascertained through further study. Findings regarding subjects’ level of uncertainty and actual knowledge about menopause were inconsistent. On the one hand, as expected, level of actual knowledge improved following the educational program, and predicted post-program uncertainty. However. actual knowledge was not a pre-program predictor of uncertainty nor was it associated with perceived level of knowledge. It can be argued that subjective perception of knowledge level should be closely associated with uncertainty since the latter is a highly subjective phenomenon. None the less, findings regarding actual knowledge must be interpreted cautiously. because of the lack of breadth and sensitivity of the measure. The impact of actual knowledge as a variable needs to be reassessed following development of a more precise and appropriate measure. Further research is required to enhance understanding of uncertainty as it relates to menopause. Studies of uncertainty related to surgical and premature menopause should be undertaken. Longitudinal investigation would allow examination of womens’ perception of uncertainty as they proceed from perimenopause to menopause. Elevated levels of perceived uncertainty associated with menopause were found to decrease following the educational program, suggesting the need for intervention designed to enhance knowledge about menopause. Additional efforts should be geared toward determining long term effects of knowledge gained on uncertainty.

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publication

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