Hysterectomy: What Do Women
Need and Want to Kulow?
Jeannette Wade, RN, MS, Pamela K. Pletsch, RN, PhD,
Sarah WI Morgan, RN, MS, CNM, Sandra A. Menting, RN, M S
=Obi& The purpose of this article is to
describe women’s experiences of hysterectomy and to
identify their fears, concerns, and met as well as
unmet health care needs.
Design: Narrative data of women‘s hysterecto-
my experiences were collected via a written survey.
Setting: Data were collected from women living
in southeastern Wisconsin.
Participants: Participantswere 102 women who
had undergone hysterectomy within the previous 2
years. The mean age of the women was 43 and mean
time since hysterectomy was 13 months. Eighty per-
cent of the women had undergone both hysterectomy
and oophorectomy, and 78% were taking hormone
replacement therapy.
Main Outcome Measures: A questionnaire of
women’s hysterectomy needs and a demographic
questionnaire were used to collect data via mail. The
data from three open-ended questions were content
analyzed.
Results: Seven themes about womenf experi-
ences of hysterectomy were identified: (a) positive
aspects, (b) hormone replacement therapy, (c) insuffi-
cient information, (d) changes in sexual feelings and
functioning, (e) emotional support, (f) psychologic
sequelae, and (9) feelings of loss.
Conclusions: Women wanted treatment choices,
a part in decision-making, accurate and useful infor-
mation at an appropriate time, provider support, and
access to professional and lay support systems. The
essentials for hysterectomy care are outlined and
include the characteristics of care that women desire,
the informationalcontent that women want, health care
systems that support patient satisfaction, and the out-
comes women want. J O G “ , 29,33-42; 2000.
Keywords: Hysterectomy-Oophorectomy-
Patient education
Accepted: July 1999
]anuary/February 2 000
Hysterectomy is one of the most common
surgical procedures undergone by women in the
United States (Kjerulff et al., 1993; Lepine et al.,
1997). The number of hysterectomies performed
has become stable at about 600,000 per year
(Lepine et al., 1997; Pokras & Hufnagel, 1987;
Wilcox et al., 1994). Data from the National
Center for Health Statistics indicate that 574,000
hysterectomies were performed in 1995, with
women who were 40-44 years old more likely
than women of other ages to have the procedure
(Lepine et al., 1997).Thus, substantial numbers of
women undergo this surgery each year. During the
past 20 years there have been varied and some-
times conflicting discussions of women’s hysterec-
tomy experiences (Metcalf, Livesey, & Hudson,
1988; Moore & Tolley, 1976; Newton & Baron,
1976; Osborn & Gath, 1990; Richards, 1973;
Roeske, 1978; Sandberg, Barnes, Weinstein, &
Braun, 1985; Tsoi, Ho, & Poon, 1984; Turpin &
Heath, 1979). Most of the discussion has been
focused on problems and adjustments, with the
benefits mostly ignored. The Kinnick and Leners
(1995) study provides insight into women’s expe-
riences in the 1990s. The current study extends
the Kinnick and Leners study with women’s
descriptions of their hysterectomy experiences in
the mid-1990s. The purpose of this research was
to analyze contemporary information, in women’s
own words, about their personal hysterectomy
experiences, and to learn of any fears, concerns, or
unmet educational needs.
Background
Previous research described women’s hys-
terectomy experiences as complex and multidimen-
sional. Gould (1986) found that women’s experi-
ences included physical, psychologic, and social
JOGNN 33
dimensions and had positive and negative elements. Sim-
ilarly, Kuczynski (1982) documented that women’s per-
ceptions varied on a continuum from negative to posi-
tive. In the Kuczynski study, women reported having one
to nine problems after hysterectomy and oophorectomy,
including fatigue, weight change, nervousness, insomnia,
difficulty concentrating or remembering, periods of cry-
ing, loss of appetite, constipation or diarrhea, sadness,
and changes in sexual behavior. Kinnick and Leners
(1995) conducted an ethnographic study of six women
in the United States 3 months after elective hysterectomy.
The dominant theme of women’s pre- and posthysterec-
tomy experiences was “from resourceful endurance to
unexpected relief.” Domains of women’s preoperative
experiences included feeling miserable because of their
symptoms, seeking out information about hysterectomy,
fears, and not knowing what to expect. After surgery, an
additional theme was the improved quality of life associ-
ated with physical and psychologic symptom relief. The
final domain was about the presence of caring support
persons. Women’s hysterectomy experiences were
dynamic, multidimensional, and contained positive and
negative components.
Hysterectomy education is part of a woman’s
health care, should meet her needs, and can contribute
to a woman’s positive perceptions of her health care
experiences. Educational methods include the use of
booklets (Patient Education Group, 1985); handouts or
pamphlets (Young, de Guzman, Matis, & McClure,
1994); books (Cutler, 1988; Harris, 1992; Hufnagel,
1989; Morgan, 1985; Page, 1987); one-on-one struc-
tured teaching (Williams et al., 1988); presurgery class-
es (Phillips, 1977); postoperative support groups
(Webb, 1986); and comprehensive education and sup-
port programs (Dulaney, Crawford, & Turner, 1990).
Neefus and Taylor (1982)studied the educational needs
of 146 women who were 2 years or less posthysterec-
tomy. Women rated the importance of nine hysterecto-
my-related informational areas. The women identified
that having information about the physical effects of a
hysterectomy was of primary importance. Knowing
about the body parts involved and recovery details
were rated next in importance. The women thought
information about physiologic effects, surgical tech-
niques, and sexuality and femininity issues were impor-
tant as well.
Sexual feelings and functioning are topics that
some women hesitate to discuss with their health care
providers (Cosper, Fuller, & Robinson, 1978). Addi-
tionally, women who are feeling stressed or anxious
about their hysterectomies may be able to absorb only
limited information (Neefus & Taylor, 1982). Providers
may be embarrassed to discuss sexual issues with their
patients (Williamson, 1992). Yet nearly 70% of the 146
women in the Neefus and Taylor (1982) study indicat-
34 JOGNN
ed that receiving information about the effect of hys-
terectomy on sexual behavior and sexual desire was
very important.
Women who undergo a hysterectomy, especially
those who are younger and may not have completed
childbearing, may experience transient or prolonged grief,
loss, and sadness (Dulaney et al., 1990; Williamson,
1992). Early hysterectomy research focused on women
who had pelvic operations and reported either a history of
depressive reactions or perceived the operation as an
attack on their person. More current research suggests
that although hysterectomy can be distressing, no evi-
dence supports hysterectomy as the cause of psychiatric
disorders (Kinnick & Leners, 1995; Lalinec-Michaud &
Engelsmann, 1984, 1988). Such discussions are present in
the literature from the United Kingdom, but they have dis-
appeared from the U.S. literature (Gath et al., 1995;
Thornton, McQueen, Rosser, Kneale, & Dixon, 1997).
Although previous research provides insight into
women’s hysterectomy experiences and the educational
approaches available, much is yet to be learned about
women’s contemporary experiences with hysterectomy.
This study is an analysis of existing data from a cross-sec-
tional descriptive study conducted in 1994 by Patsdaugh-
ter and Wade. The questions addressed in the current
study were (a) What are the biopsychosocial aspects of
women’s hysterectomy experiences? (b)What are women’s
hysterectomy-related fears, concerns, or questions? (c)
How can women’s educational needs be better met?
Design
The Patsdaughter and Wade study was a replica-
tion of the Neefus and Taylor (1982) study of women’s
experiences and educational needs regarding hysterecto-
my. The Patsdaughter and Wade sample, used in the
current study, consisted of women living in southeastern
Wisconsin who had undergone hysterectomy within the
previous 2 years. Women were recruited through flyers,
contacts with women’s organizations, and newspaper
advertisements. Two hundred women expressed interest
in participating. They weie mailed questionnaires with
a return, stamped, self-addressed envelope. Eventually,
181 women returned the questionnaires for a response
rate of 91%. The Neefus and Taylor (1982) question-
naire, which included 23 forced-choice questions and
four open-ended questions, was used. Three of the
open-ended questions asked women to describe their
experiences, fears, concerns, and unmet educational
needs regarding hysterectomy. A brief demographic
questionnaire was included. The study was reviewed
and approved by the University of Wisconsin-Milwau-
kee Institutional Review Board for the Protection of
Human Subjects.
Volume 29, Number 1
Methods
The data used for this analysis were from the
demographic questionnaire and the written responses of
102 women to the three open-ended questions about
women’s hysterectomy experiences. The open-ended
questions were as follows:
1. Overall, how would you describe your hysterecto-
my experience?
2. What fears, concerns, or questions related to your
hysterectomy do you still have?
3. How could your educational needs regarding your
hysterectomy have been better met or served?
Responses to these questions were typed verbatim
into a word processing file. A thematic content analysis
of the text across questions was conducted (Miles &
Huberman, 1984). Initial coding categories were identi-
least some college education, and 94% were employed
at least part time.
Themes
Women’s responses to the open-ended questions
about their hysterectomies yielded information about
the variation and commonalities of the experience.
Women’s descriptions were categorized into seven
themes: (a) positive aspects of hysterectomy, (b) com-
ments and concerns about hormone replacement thera-
py, (c) insufficient information, (d) changes in and con-
cerns about sexual functioning, (e) need for a structure
that would provide them with emotional support, (f)
psychologic sequelae, and (g) feelings of loss.
Positive Aspects. Sixty-one out of 102 women
wrote about the positive aspects of having a hysterecto-
my. These women received relief from troublesome

-
fied from the data by the first author. The first two
authors reviewed the categories with samples of the text TABLE 1
and collapsed the initial categories into themes. The sec- Sample Characteristics (n = 99)a
ond author independently reviewed the themes with
another sample of text for conceptual consistency. Any Characteristic M SD
discrepancies were discussed between the first two
authors until consensus was reached. Member checks Age 43.1 6.4
were not possible because the questionnaires were Months since hysterectomy 12.7 7.1
anonymous. Seven themes were identified through the Frequency Percentage
content analysis. Hysterectomy and 80 80.1
The results were based on qualitative data from oophorectomy
102 women, and limitations exist. Data were collected Hysterectomy only 19 19.9
in one community from a relatively homogeneous sam- Hormone replacement 77 77.8
ple. The data were cross-sectional. Thus, women’s expe- therapy
riences over time were not studied. Data, however, were Ethnicity
from women who were at various time intervals African American 4 4.0
posthysterectomy. Women’s descriptions of their experi- White 89 89.9
ences required recall, which is subject to bias. Because Hispanic 4 4.0
the data were collected by anonymous survey, it was not Marital status
possible to ask additional questions or for clarification.
Married 43 43.4
The data were collected in 1994. No substantial
changes, however, have occurred in hysterectomy care Living with domestic 18 18.2
partner
since the data were collected.
Separated 17 17.2
Single 17 17.2
Results Widowed 4 4.0
Sample Highest education
The 102 women who answered the open-ended Some high school 1 1 .o
questions had the following characteristics (see Table High school graduate 11 11.1
1). Their mean age was 43 (SD = 6.4) and mean time Some collegehechnical 43 43.4
since hysterectomy was approximately 1 year. Nearly school
80% of the women had undergone both hysterectomy College degree 20 20.2
and oophorectomy, and 78% were using hormone Graduate degree 24 24.2
replacement therapy (HRT). Ninety percent of the Employed 93 93.9
women were of European-American heritage, and 63 %
aThree participants did not complete the demographic
were married or living with a partner. All but one par- questionnaire.
ticipant had completed high school, over 80% had at

JanuarylFebruary 2000 JOG” 35

symptoms, received good information and support from
their providers, and actively participated in decision-
making. Descriptions were clustered into four areas: (a)
relief from physical symptoms and improved quality of
life, (b) receipt of accurate and realistic information, (c)
receipt of support from their physicians, and (d) being
involved in the decision to have the hysterectomy.
Thirty women wrote about relief from physical
symptoms and improved quality of life. A 46-year-old
woman, 24 months posthysterectomy, wrote,
I was thrilled to finally be pain free and free of
monthly hemorrhages. I was being returned to my
room after surgery and recovery room and I would
call out to people in the hallway. “I don’t have a
uterus anymore and I’ll never again have a menstrual
period!” I was free of my fibroids and all the discom-
fort and pain they had caused me.
Twenty-one women wrote about receiving accu-
rate and realistic information from their physicians and
nurses. One woman, age 42, 8 months posthysterecto-
my, wrote
My physician and his nurse explained the entire
process and answered any questions I had. I went into
the hospital with a good attitude and it carried me
through a quick recovery.
Five women identified their physician as being
supportive. These women used words, such as caring,
concerned, and genuine, to describe their gynecologists.
A 48-year-old woman, 7 months posthysterectomy,
wrote
Both my family doctor and my gynecologist
would pull up a chair and sit beside my bed when [they]
would talk to me. [They] gave me support throughout
the entire time, [they were] really concerned about me.
Finally, five women described factors that con-
tributed to their making an informed decision about
having a hysterectomy. Active participation in the deci-
sion was desired. A 36-year-old woman, 24 months
posthysterectomy, wrote
The doctor I selected was recommended as a sec-
ond opinion. I felt that he understood the situation much
better. He educated me in what my problem was, drew
pictures, gave me plenty of time to ask questions and
even answered my phone calls when I called him. Hav-
ing the opportunity to make a choice was tremendously
important to me, in a way, it was a real education.
Women also wrote about their concerns, dissatis-
factions, and unmet needs.
Hormone Replacement Therapy. Seventy-eight
percent ( n = 77) of the sample took HRT. More than
half ( n = 45)of these women wrote about fears and con-
cerns that were based on a lack of information and par-
ticipation in decision-making. Twenty-one women
36 JOGNN
wrote that they were not given adequate information
about HRT. Several respondents wrote they were
excluded from the decision about their use of HRT.
Some women were unaware that various combinations
of HRT existed. A 46-year-old woman, 22 months
posthysterectomy wrote
I was immediately started on Estraderm patches
and Provera without any discussion of the pros and
cons of estrogen replacement, or the purpose of
Provera. No information on side-effects of the medica-
tion was given or the purpose of Provera. I feel that this
information should have been explained and discussed
prior to prescribing.
Some women expressed fears about HRT. Women
who had endometriosis wrote that they feared a return
of their preoperative symptoms if started on HRT. A 45-
year-old woman, 24 months posthysterectomy, wrote
Concerns that the pain of endometriosis will
come back. I still feel it was wrong to take a healthy
ovary out. Everything should be done to keep all
organs. My sexual desire has died overnight and I still
am not used to the complete change of my body. It’s a
completely different machine now. My bones, especial-
ly my knees, have hurt me for 1 % years and still both-
er me.
Other women were afraid of the risk of develop-
ing cancer as a consequence of HRT. A 39-year-old
woman, 24 months posthysterectomy, wrote
One concern I have relative to hysterectomy is
that they say the chance of getting breast cancer is
increased due to the use of estrogen. Also, I retain more
water and I find it more difficult to lose weight.
Some women felt that their health care provider
did not conduct adequate follow-up care or monitoring
after HRT was prescribed. Several women wrote about
the side effects associated with HRT, such as weight
gain, breast tenderness, headaches, and mood swings. A
39-year-old woman, 5 months posthysterectomy wrote
The surgery itself was OK, but I am having trou-
ble with the hormone therapy and side effects. I also
have aches in my joints I never had before the surgery
and I have gained weight.
Insufficient Information. About one third ( n = 38)
of the sample wrote about having insufficient informa-
tion about hysterectomy, their own anatomy and phys-
iology, and menopause. Twenty-eight women identified
insufficient quality and quantity of information regard-
ing the surgery. Women wanted their physicians to
spend time with them. They also wanted current and
accurate literature, books, articles, or videos. A 47-year-
old woman, 4 months posthysterectomy, wrote
Perhaps a booklet or book could be given to a
woman patient who is contemplating a hysterectomy so
Volume 29, Number I
 that she could make an informed decision on whether to
have surgery or not. A book or video that she could take
home, discuss with her family, then prepare questions
pertaining specifically to her situation.
Five women identified a general lack of informa-
tion about female anatomy and physiology. These
women wanted to know about organ function and
which organs were removed during surgery. A 44-year-
old woman, 1 month posthysterectomy, commented
Not having a complete knowledge of the female
anatomy, I still wonder how the one ovary that was left
is functioning. I no longer have my uterus and my left
ovary was removed. Just curious as to how the right
ovary is attached or is it just floating in emptiness.
Five women had questions about menopause.
They were unsure about what menopause meant, what
they would experience, and what a premenopausal
woman might experience if her ovaries were removed. A
34-year-old woman wrote
Do I need a Pap smear anymore? What about
menopause? Am I in menopause? I have hot flashes. I
wish I had some answers.
Sexual Concerns. One fourth ( n = 28) of the sam-
ple wrote about sexual concerns, including distressing
physical changes and having insufficient information
about changes in their sexual feelings and functioning.
The women wrote about their difficulty in obtaining
information from health professionals. Physical changes
in a woman’s sexual response were noted frequently.
These changes included a longer time needed for
arousal, a change or difference in the way orgasm was
experienced, a loss of desire, and vaginal dryness. A 41-
year-old woman, 5 months posthysterectomy, wrote
More information about what to expect after the
surgery. For example, vaginal drynesshtching and how
to overcome it. Knowing about the need for a longer
time for becoming aroused during sexual relations. The
lack of sexual desire. If I had known about these prob-
lems ahead of time, and how to deal with them, it
would have been easier to cope.
A lack of anticipatory guidance regarding sexual
concerns also was identified. Nineteen women stated
that very little or no information was provided by their
physician preoperatively. Even when direct questions
were raised about potential changes in sexual function-
ing, respondents noted that their concerns were mini-
mized by their physicians. A 35-year-old woman, 7
months posthysterectomy, wrote
A big area which was not addressed was the
effects on sexual relations-even though I point-blank
asked my doctor individually, “specifically what I’m
going to have to look forward to.” She said, “Oh, there
won’t be much problem.” I knew scientifically/surgical-
JanuarylFebruary 2000
ly all that was going to happen, being in the health field
for 13 years. However, knowing versus coping and
acceptance of knowing how to compensate for the lack
of sexual impacts is two different topics. Luckily, I had
a neighbor who went through a hysterectomy and I was
discussing the desire, the process, etc., with her.
Many women described seeking out a friend or
neighbor, as in the previous comment, to talk with
about issues of sexual functioning. Some women wrote
about using information from books, pamphlets, and
other reading materials as a coping strategy to compen-
sate for the lack of information provided by their physi-
cians or nurses.
Structure for Emotional Suppovt. One fifth of the
women ( n = 20) wrote about the need for systems to
provide women with emotional and informational sup-
port related to hysterectomy. Women identified the lack
of a structure within the health care system for provid-
ing emotional support throughout their hysterectomy
experience. Several women wanted to talk with other
women who had undergone hysterectomy. Suggestions
offered included pre- and posthysterectomy support
groups, a hot line for questions, or another vehicle for
interpersonal female discussion. One woman, 39 years
old and 2 4 months posthysterectomy, wrote the fol-
lowing:
I feel I should have gone to some type of sup-
port class before I had the surgery. I think it would
have been helpful to talk with other women and find
out, before and after, if some of the feelings I felt
were normal. Everyone was supportive and encour-
aging. However, they could not really relate to the
feelings I had and sometimes still experience.
Psychologic Sequelae. Women ( n = 17)also wrote
about psychologic distress associated with hysterecto-
my. Their experiences ranged from mood swings to one
instance of clinical depression. These women felt they
received insufficient information about potential psy-
chologic sequelae. Even when written informational
materials were provided, the women wrote that the
materials were insufficient or did not adequately pre-
pare them for their emotional responses to hysterecto-
my. A 31-year-old woman, 17 months posthysterecto-
my, wrote “Physically fine, emotionally horrible, 1 ?4
years and still struggling emotionally.” Another woman,
4 5 years old and 6 months posthysterectomy, wrote
On a scale of 1 to 5 , I would rate my experience a 2. I
was pretty much prepared for the physical aspect of a hys-
terectomy, but I was not prepared for the emotional roller
coaster I have been on. No one said anything about this.
Feelings of Loss. A small number of women ( n =
5 ) , all of childbearing age, wrote of the grief and loss
they experienced after hysterectomy. These women
wrote about changes in feelings of femininity, changes
JOGNN 37
in their body image, and loss related to their infertility.
A 31-year-old woman, 17 months posthysterectomy,
wrote “Was it really the right thing? Will I ever get
through the loss, grief, etc.? I don’t feel I’m really a
woman, too much was taken from me.” All of these
women’s responses support the need for information,
support, and participatory decision-making throughout
the hysterectomy experience.
Discussion
The experiences and health care needs of the 102
women who participated in this study add to hysterec-
tomy literature and provide direction for the nursing
care of women undergoing hysterectomy. The most
common theme noted throughout these women’s
descriptions of their hysterectomy experiences was the
positive aspects of the surgery. Having choices, accurate
and realistic information, support, and improved quali-
ty of life were factors women described as positive.
Clarke, Black, Rowe, Mott, and Howle (1995) studied
366 women in the United Kingdom who had undergone
abdominal hysterectomy. By 6 weeks after surgery,
women reported improvements in their health status,
quality of life, and sexual activity. Quality of life was
also assessed by Carlson, Miller, and Fowler (1994)
among 418 women in Maine who had undergone hys-
terectomies for nonmalignant conditions. At 1 year
after surgery, women who had distressing prehysterec-
tomy symptoms reported a marked improvement in
symptoms. However, women reported new problems of
hot flashes, weight gain, depression, and lack of interest
in sex. In the Kinnick and Leners (1995) study described
earlier, participants reported an improvement in their
quality of life. These results are consistent with the
experiences of many women in the current study. Thus,
women may have positive feelings about their hysterec-
tomy experiences. However, surgery can result in new
hysterectomy-related needs.
Having choices, accurate and realistic information
at an appropriate time, provider support, and access to
support systems were described as positive aspects of the
hysterectomy experience when women received them
and were identified as unmet needs when women did not
receive them. Other researchers have identified the
importance of women being given the opportunity to
participate in decision-making (Cherkin, 1994; Kinnick
& Leners, 1995). Women also wanted information in
several content areas.
Surgical menopause and hormone replacement
therapy were topics about which these women wanted
more information. They also wanted a more active role
in decision-making about HRT. Eighty percent of the
women in this study had their uterus and ovaries
removed, and 78% of the women were taking HRT.
38 JOGNN
W o m e n ‘ s experiences with hysterectomy
differed regarding information received,
provider support, part in decision-making,
and improvement in quality of life.
McNagny and Jacobson (1997), in their study of 328
African American women, reported that participants
who had undergone hysterectomy were significantly
more likely to be taking HRT. Langenberg, Kjerulff, and
Stolley (1997) studied 1,299 women, and found that at
24 months after hysterectomy, 85% were taking HRT.
Brett and Madans (1997) analyzed data from the first
National Health and Nutrition Examination Survey fol-
low-up study of 5,602 women who had become
menopausal. They found a higher probability of HRT
use among women who were white, more highly edu-
cated, lived in the western United States, or had experi-
enced surgical menopause. Thus, substantial numbers
of women who have had hysterectomies are faced with
decisions about HRT use.
Sexual feelings and functioning constituted a sec-
ond area for which women wanted information and
provider support. Williamson (1992) wrote about
women’s needs for anticipatory guidance related to
decreased libido, physical changes, and feelings of loss
and grief after hysterectomy. Bellerose and Binik (1993)
studied mood, body image, and sexual functioning
among 129 women who fell into one of five groups:
nonsurgical control, hysterectomy-only, oophorecto-
my-no hormone replacement, oophorectomy-estrogen
only, oophorectomy-estrogen plus androgen. Results
indicated that all surgical groups reported more sexual
problems than the nonsurgical control group. Kinnick
and Leners’ (1995) participants, however, did not report
sexual concerns. Information about sexual changes
after hysterectomy is in the literature. Women in the
current study had difficulty obtaining information from
health care providers about changes in sexual feelings
and functioning. In the absence of professional inter-
vention, they turned to neighbors, friends, books, and
pamphlets for advice and information.
Emotional distress, feelings of grief and loss, and
the need for system structures which provide support
comprise the third area for which women wanted infor-
mation and improved quality of care. Neefus and Tay-
lor (1982) and Williamson (1992) discussed the feelings
of anxiety, grief, and loss that women may experience
after hysterectomy. Some women in this study described
Volume 29, Number 1
emotional distress which continued for months after
hysterectomy and noted that they had not received
desired information and support. Several women’s
statements indicated that even months after their hys-
terectomies, they had unresolved feelings and were emo-
tionally distressed. The emotional needs of these women
were not met.
What women wanted and needed was expressed
in this study. In contemplating a hysterectomy and
oophorectomy, women wanted information about their
reproductive anatomy and physiology; how surgery
would change their anatomy; and what physical, sexu-
al, and emotional changes they might experience. They
wanted information about the types of HRT available,
what the risks and benefits might be, and how HRT was
related to symptoms, such as hot flashes, weight gain,
depression, vaginal lubrication, and sexual libido.
Women wanted information before their hysterec-
tomies about potential sexual changes. They wanted the
opportunity to discuss these changes and potential
treatments with their health care providers. Many
women wanted the opportunity to talk with other
women who had undergone hysterectomy. They wanted
organized support groups available to them as a
resource. Women wanted support from health care
providers and peers available during all phases of their
hysterectomy experience. Women wanted providers
who were willing to give them choices and include them
in decision-making.
The wants and needs of the women in this study
are consistent with the core values for woman-centered
W o m e n want information about anatomy
and physiology; hospital and surgical
procedures; physical, sexual, and emotional
changes; and management of posthysterectomy
symptoms and hormone replacement therapy.
care identified by attendees of the 1993 Jacobs Institute
of Women’s Health conference (Weisman, 1998). Those
values are (a) mutual respect between women and
health professionals, (b) prevention and wellness as part
of comprehensive care, (c) multidisciplinary teams
available to provide care, (d) education as an integral
part of care, and (e) quality improvement that includes
clinical outcomes and professional practice standards.
Some participants wrote that their care reflected these
values, while others found them missing.
JanuarylFebruary 2000
The demographic characteristics of the women in
this study indicated that they were well educated, most
were employed outside the home, and as indicated by
their participation in this study, were willing, able, and
motivated to tell the story of their hysterectomies. These
characteristics suggest that women in this study were
well positioned to obtain the information and services
they needed. Yet, many women had difficulty getting
information and support from their health care
providers. One can only speculate about the experiences
of more vulnerable groups of women. Future research
needs to include less educated women, women living in
remote areas, or socioeconomically disadvantaged
women to learn of their experiences.
Nearly all of the interventions that women in this
study said they wanted and needed were included in a
program developed by Dulaney, Crawford, and Turner
Future research should include diverse groups
of women, evaluation of models for the
delivery of women’s health care, and
organizational structures which support or
inhibit nurses providing care for women
undergoing hysterectomy.
(1990) almost a decade ago. Although many study par-
ticipants had good experiences, the care provided to the
women was uneven. Because of this study and others,
information is available about the characteristics, con-
tent, system structures, and outcomes that women want
in hysterectomy care (see Table 2). Why are some
women not receiving the care they want and need? Two
research trajectories can help answer this question: (a)
studies that evaluate models for and effectiveness of
women’s health care programs and (b) studies of care
provider mix and organizational structures.
Debate exists in the literature about whether
women’s health services should be integrated into regu-
lar health care or segregated (Weisman, 1998) and
whether care should be approached using an aggregate
or individual episodic model (Gevirtz, Corrato, Chod-
off, & Nash, 1999). Macro level studies are needed to
explain the health conditions and the women who are
best served by these different models. It is unlikely that
one model will work for all. Micro level studies to eval-
uate the effectiveness and efficiency of comprehensive
programs, brief intervention programs, self-help pro-
JOGNN 39

-TABLE 2
Essentials of Hysterectomy Care
Characteristics of Hysterectomy Care
Timely information before, during, and after hys-
terectomy
Accurate and realistic information in multimedia
form
Choices about procedures and treatments, with the
woman in a decision-making role
Provider support and structures for support from
women who have had hysterectomies
Monitoring of women’s recovery and posthysterecto-
my therapies
Content Women Want
Anatomy and physiology related to hysterectomy
How surgery might change anatomy
Hospital and surgical procedures
Potential physical, sexual, and emotional changes
Types of hormone replacement therapy available
Risks and benefits of hormone replacement therapy
Symptom-specific treatment options (e.g., vaginal
dryness and itching, joint pain)
Management of posthysterectomy symptoms, such
as hot flashes, weight gain, depression, reduced
libido, change in sexual response
Health System Structures
Health care providers available and accessible
Information about and access to support groups,
community support
Outcomes
Improved quality of life, relief from prehysterectomy
symptoms, management and monitoring of new
posthysterectomy symptoms
Satisfaction that they were cared for, informed, and
respected
Good feelings about decisions
grams, or Internet-based programs are needed to identi-
fy effective and efficient interventions. For example, one
could design, implement, and evaluate an Internet-
based hysterectomy educational program for women
living in remote areas. Evaluation would be facilitated
by the development and use of databases, such as
administrative databases and the Health Plan Employer
Data and Information Set (HEDIS). Although these
databases have limitations, nurses need to be involved
in their development so program evaluation data are
included and retrievable.
The optimal mix of care providers and the organi-
zational structure in which nurses work are areas for
future research. The women in this study wrote primar-
40 JOG”
ily about interactions with their physicians. Why were
nurses not mentioned more often? Women may have
had limited contact with nurses, especially in ambulato-
ry care settings. Women may not have been able to dif-
ferentiate between nurses and other care providers.
Women may have expected or preferred to receive infor-
mation and support from their physicians. Caseloads
may have been too heavy for nurses to provide compre-
hensive care. Studies are needed to examine organiza-
tional structures that support or inhibit nurses’ visibili-
ty in patient care. Research is needed to identify
organizational structures that support evidence-based
nursing practice. For example, in the ambulatory care
setting, studies of patient movement through the system
would be useful. Critical aspects include staff knowl-
edge and use of practice standards for hysterectomy
care, identification of which personnel (e.g., RN, MD,
psychologist) have responsibility for various aspects of
care, documentation of interventions, follow-up, refer-
rals, assessment of patient satisfaction, and feedback to
staff about patient outcomes. Quality indicators such as
provision of information, counseling about HRT, refer-
ral to support groups, and follow-up could be used to
evaluate nursing practice and demonstrate nursing’s
contribution to desired patient outcomes. The examina-
tion of organizational structures will help identify
which system characteristics support nurses providing
care for women undergoing hysterectomy and which
can be changed.
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JOGNN 41
Jeannette Wade is a clinical nurse specialist, St. Luke’s Med- Sandra A. Menting is a clinical nurse specialist, St. Luke’s
ical Center, Milwaukee, W. Medical Center, Milwaukee, W.
Pamela K. Pletsch is an associate professor, School of Nurs-
Address for correspondence: Pamela K. Pletsch, RN, PhD,
ing, University of Wisconsin-Milwaukee.
Sarah K? Morgan is a doctoral student in the School of Nurs-
ing, University of Wisconsin-Milwaukee.
I Associate Professor, School of Nursing, University of Wiscon-
sin-Milwaukee, P.0. Box 413, Milwaukee, W 53201. E-
mail: PAMELA@CSD.UWM.EDU.

JOGNN Review Panel: 2000

Rebecca Attenborough, RN, MN
Jana L. Atterbury, RNC, MSN
Linda Bell, RN, MSc
Caroline Brown, RNC, MS, DEd
Mary Brucker, CNM, DNSc
Lynn Clark Callister, RN, PhD
Sandra K. Cesario, RNC, PhD
Barbara Dion, RNC, ICCE, MA, MSN
Grace-Elizabeth Djupe, RNC, MS
Patricia M. Dunphy, MSN, CS, RNC
Susan M. Ellerbee, RNC, PhD, IBCLC
Robin G. Fleschler, RNC, CNS, MSN
Catherine Ingram Fogel, RNC, PhD,
FAAN
Peggy Gordin, RNC, MS, FAAN
Jeanne T. Grace, RNC, PhD
Annette Gupton, RN, PhD
Carol Hartwig, RN, MS, CNAA
Mary Henrikson, RNC, MN, ARNP,
WHCNP
JoAnne Kirk Henry, RN, CS, EdD
M. Katherine Hutchinson, RNC, MS,
PhD
Debra Jackson, RNC, BSN, MPH
Shirley L. Jones, RNC, PhD
Suzan Kardong-Edgren, RNC, MS,
FACCE
Margaret H. Kearney, RNC, PhD
Cheryl P. Kish, RN, EdD, WHCNP
Linda J. Kobokovich, RNC, MScN
Judith Lewis, RNC, PhD, FAAN
Kelly Lindgren, RN, PhD
Sharon Lock, RNC, FNP, PhD
M. Cynthia Logsdon, DNS, ARNP
Laura Mahlmeister, RN, PhD
Cathleen R. Maiolatesi, RN, MS
Judith Maloni, RN, PhD
Linda J. Mayberry, RN, PhD
Tara McComb, RN, MSN, PhD
Emily S. McKinney, RN, C, MSN
Dianne Morrison-Beedy, RNC,
WHNP, PhD
Paulina G. Perez, RN, BSN, LCCE,
FACCE, CD
Cynthia Amstrong Persily, RN, PhD
Martina Letko Porter, RNC, MS,
MBA
Kristen D. Priddy, RNC, MSN, CNS
Diana J. Reiser, RN, MAEd, MN
Beth Collins Sharp, RN, PhD
Mary Ann Stark, RNC, PhD
Rosemary Theroux, RNC, MS
Suzanne Thoyre, RN, PhD
Cecilia Tiller, RNC, DSN, WHNP
Judith Carveth Trexler, RN, PhD,
CNM
M. Terese Verklan, RNC, PhD
Tina Weitkamp, RNC, MSN
Luanne Wielichowski, RNC, MSN
Lenore R. Williams, RN, MSN

42 JOG” Volume 29, Number 1