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International Journal of Nursing Practice
2003;
9
: 2–9
Blackwell Science, LtdOxford, UK
IJNInternational Journal of Nursing Practice1322-71142002 Blackwell Science Asia Pty Ltd
91February 2003
396
Focus group study of endometriosis
H Cox
et al.
10.1046/j.1322-7114.2002.00396.x
Original Article29BEES SGML
Correspondence: Professor Helen Cox, Centre for Clinical Nursing
Research, Epworth Hospital, 89 Bridge Road, Richmond, Victoria
3121, Australia. Email: helencox@deakin.edu.au
✠
RESEARCH PAPER
✠
Focus group study of endometriosis:
Struggle, loss and the medical merry-go-round
Helen Cox RN, PhD
Chair of Contemporary Nursing, Deakin University/Epworth Hospital, Richmond, Victoria, Australia
Lorraine Henderson RN
Member, Endometriosis Association (Vic) Inc.,Victoria, Australia
Natalie Andersen RN
Clinical Nurse Specialist, Day Surgery Unit, Epworth Hospital,Richmond, Victoria, Australia
Glenda Cagliarini
Student nurse and member, Endometriosis Association (Vic) Inc.,Victoria, Australia
Chantal Ski PhD
Research Fellow, Deakin/Epworth Centre for Clinical Nursing Research, Epworth Hospital, Richmond, Victoria, Australia
Accepted for publication July 2002
Cox H, Henderson L, Andersen N, Cagliarini G, Ski C.
International Journal of Nursing Practice
2003;
9
: 2–9
Focus group study of endometriosis: Struggle, loss and the medical merry-go-round
Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This
paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs
of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a
forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61
women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the
worst experience that these women described was the encounter with health professionals and the ways in which their
symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with
endometriosis if they are to support women with this chronic illness in their search for well-being.
Key words:
endometriosis, trivialisation, delayed diagnosis, loss, taking control.
INTRODUCTION
Endometriosis is a chronic condition of as yet undeter-
mined origin. It is the second most common gynaecolog-
ical condition, affecting approximately 10% of women in
their menstruating years. It is one of the leading causes of
infertility in women over the age of 25 and it is believed
that approximately 30–40% of infertile women have some
degree of endometriosis.
1
Nurses encounter women with
endometriosis in a variety of settings: community health
centres, schools, GP clinics, day surgery units and surgical
wards. This paper describes a study undertaken by staff of
Epworth Hospital, Deakin University and the Endometri-
osis Association (Vic) which explored the information
Focus group study of endometriosis 3
needs of women having laparoscopy for endometriosis. In
particular, the paper describes the experiences that these
women went through in their journey to be diagnosed and
treated appropriately, rather than focusing on the laparos-
copy experience itself. The purpose of this paper is to
increase awareness of women’s experiences of endometri-
osis and the lack of support for women sufferers. A stark
picture of struggle and loss, trivialisation and dismissal is
presented. Endometriosis is depicted as a chronic condi-
tion that doctors and nurses do not know enough about
and do not manage well. Although the information pre-
sented is most pertinent to doctors, there are important
messages for nurses also. Where nurses aim to give holistic
care, an understanding of the experience of living with
this chronic illness is vital.
Background
In endometriosis, tissue that is usually found lining the
uterus is found elsewhere, generally in the pelvic cavity.
This tissue responds to reproductive hormone cycles,
eventually causing irritation, inflammation and scarring.
Endometriosis can cause a variety of symptoms, particu-
larly pain, and is often quite debilitating.
2
Diagnosis of
endometriosis often takes a long time. The Endometriosis
Association (Vic) conducted a survey of 750 women in
1989 and found that the average time between symptom
onset and diagnosis was over 6years (Wood, R., unpubl.
data, 1992). The survey results indicated that the delay
was partly attributable to difficulty with diagnosis, but
that there was also an attitude among doctors of not taking
women’s complaints of symptoms such as period pain
seriously. Investigations aimed at establishing a physical
cause of such pain are usually delayed and prolonged. In
addition, endometriosis is sometimes not considered to
be a priority health care issue by the medical profession,
despite the high emotional and physical impact it has on
women. It is not seen as a high acuity problem.
The published reports on endometriosis paint a picture
of a disease that women experience as problematic in a
number of areas of their lives. A national survey of 4000
members of the National United Kingdom Endometriosis
Society found long delays to diagnosis (7 years on aver-
age); lives of chronic pain and multiple laparoscopies for
treatment; distress due to infertility; and loss of career
and relationships.
3
The findings suggest a lack both of GP
knowledge of endometriosis and of empathy for sufferers.
In another study that examined GP knowledge, attitudes
and views on diagnosis of endometriosis, knowledge gaps
about possible symptoms were uncovered, and it was
found that older GPs have less knowledge of the condition
than do younger ones.
4
General practitioners themselves
readily agree that they lack knowledge and that they expe-
rience difficulty diagnosing a disease where the symptoms
are difficult to distinguish from other diseases.
In a study by Carlton, women’s experience with GPs
was varied.
3
The study found that, once women sought
help for their symptoms: (i) 41% were referred to a spe-
cialist within 6 months because the GP suspected
endometriosis; (ii) 16% were referred to a specialist
within 6 months to 2years; and (iii) 16% had no diagnosis
after 2 years. Of the 70% who told their GP that they sus-
pected endometriosis, 26% were referred on to a special-
ist immediately. In other words, the GP listened to their
reasons and thought them legitimate. Fifteen percent
were referred reluctantly, and a further 18% were not
referred on because the GP disagreed with their self-
diagnosis. Of concern is that 7% were completely ignored
by their GP.
Similar experiences have been reported in New
Zealand
5
and in the USA
6
with the persistent somatisation
of endometriosis also having been reported in the latter.
Somatisation occurs when a patient is considered to have
underlying psychological factors or conflicts that cause the
symptoms of a disease rather than to have a true physical
disease. According to the
Diagnostic and Statistical Manual
of Mental Disorders
(DSM-4R),
7
somatisation primarily
affects women. Ballweg wrote, ‘an article written by psy-
chiatrists for the
Journal of Family Practice
states that “only a
1h outpatient evaluation is required to make the diagnosis
[of somatisation]”.’ The result is that a patient is referred to
a psychiatrist or psychologist: practitioners, as Ballweg
notes, who are ‘even less educated about endometriosis
than the referring physician’.
6
In respect to GP empathy, women in the New Zealand
study
5
did not believe doctors are attuned to how the dis-
tress is experienced, why it is of importance, and how it
affects their lives. Participants perceived this results pri-
marily from the doctors’ preoccupation with a largely bio-
medical conception of the disease.
5
When women are eventually diagnosed with
endometriosis, their struggle often continues. It is often
the case that the more they discover about this disease, the
more they fear that they will never be pain-free, be fertile
or have a normal life as no treatment is entirely satisfac-
tory and the disease has a high recurrence rate. Such fears
are not unjustified. Studies have indicated that approxi-
4 H Cox
et al.
mately 20% of women will have a recurrence of their
symptoms of endometriosis within 12 months of treat-
ment, regardless of the type of treatment received, and a
further 50% will have a recurrence within 5 years.
8,9
The
longer a woman must deal with the symptoms of and
treatment for endometriosis, the more likely it is she will
feel overwhelmed and powerless.
9
The current study
Endometriosis is diagnosed by investigative laparoscopy
and one of the treatment options is operative laparoscopy.
Both investigative and treatment laparoscopies are gener-
ally done in day surgery units. The Day Surgery Unit at
Epworth is increasing activity at a rate of 20% per year,
with a throughput that was 150% higher in 2000 than it
was in 1995. Over the 12 months of 2000, 685 patients
per month received treatment.
10
Gynaecology is one of
the major specialty areas using the Day Surgery Unit.
Monash IVF operate from Epworth and Epworth also runs
an Endometriosis Clinic in conjunction with Endometri-
osis Association (Vic) Inc. As a direct consequence, the
Day Surgery Unit has increasing numbers of women
undergoing gynaecological procedures for endometriosis.
They form a growing consumer group.
METHODS
This study used both qualitative and quantitative methods,
with a survey and focus group designed to determine con-
sumer needs for information related to day surgery for
endometriosis-related problems. A total of 1031 surveys
were sent to women who had been diagnosed with
endometriosis through the Endometriosis Association
(Vic) Inc. membership and the Epworth Endometriosis
Centre database. A 65% response rate was achieved. Of
the survey respondents, 61 women also contributed to
focus groups, either in person or by telephone (for those
who lived interstate or in rural locations where there were
insufficient numbers for a group meeting, but where
women were adamant that they wanted their voices heard
in this matter). Focus group outcomes are reported in this
paper.
Focus groups
Five focus groups were held to further explore issues
identified in the survey. Women were invited to add their
opinions regarding what information they would like to
receive or contribute about endometriosis, including but
not restricted to (i) the nature of the disease; (ii) their
experience of living with endometriosis; and (iii) their
experience with diagnosis and treatment.
The study leader, Helen Cox, acted as facilitator for
each focus group. At each of the focus groups a member
of the Study Steering Committee representing the
Endometriosis Association was present as a support per-
son. It became evident at the first focus group that the
women had undergone quite traumatic experiences: some
became distressed during discussions and two required
debriefing following the meeting. The telephone inter-
views, in particular, had to be managed with a great deal
of sensitivity and opportunities for debriefing were
offered at the end of the meetings and telephone calls to
be sure that no one was left unsupported.
The focus groups were audiotaped and transcribed ver-
batim. In addition, the study leader took notes during
each group and kept a diary for later reflection. Tapes were
listened to several times and transcripts read and re-read
by the study leader. Themes were identified and then
checked to be sure they had emerged from the data rather
than been forced on the data. The transcripts were then
re-read for illustrations of the themes. At the end of this
process, the data analysis was given to the other members
of the study team who had attended the focus groups so
that they could comment and was also mailed to the par-
ticipants for validation. The majority of these women indi-
cated that the thematic analysis was true to their
experience.
RESULTS AND DISCUSSION
The demographics of the focus groups are provided in
Table1. It needs to be stated at the outset that the women
in the focus groups may represent a skewed sample, as all
had experienced a long history of struggle both with the
disease and with treatment. Many who were members of
the Endometriosis Association joined because of their
need for ongoing support and advice. It may be that those
who chose not to participate in focus groups did not share
this experience of trauma. Nevertheless, the results of the
survey, along with the experiences of the women in the
focus groups, highlight a number of problems. These
problems are discussed under the three key themes that
arose from the data: ‘Living with endometriosis’, ‘The
doctor trail’ and ‘Taking control’.
Living with endometriosis
Although this study had a particular focus on day surgery,
the majority of women in the focus groups wanted to
Focus group study of endometriosis 5
talk about what it was like to live with endometriosis
broadly. Indeed, each focus group could have run for
much longer, such was the need of the women to tell of
the trauma, distress and anger of not being taken seri-
ously. Two subthemes could be identified under the theme
of living with endometriosis: ‘The long struggle’ and
‘Depression’.
The long struggle
Most of the women had been living with endometriosis
for many years. In some cases there was a significant gap
(i.e. 3.8years average from survey data) between the
onset of symptoms and seeking help. Some of the women
explained that their experience of pap smears had been
extremely painful and made them reluctant to seek med-
ical advice that would no doubt require a pelvic examina-
tion. Others said that they found intercourse painful and
were embarrassed to discuss such personal issues with
anyone. Some said they guessed that they might have
endometriosis but when they read a bit about it, they
became scared and decided they did not want to know.
Yet others had been convinced by their mothers, aunts,
teachers or others that painful periods were normal, and
no one had made any association with other symptoms
they were experiencing to connect them to a bigger
picture.
Many of the women had experienced symptoms as
adolescents, that is, in the 10–16 years age range. They
had been through the struggle of the doctor trail, of
parents who were unsympathetic and who felt that this
was ‘a woman’s lot’, particularly if their mother and
grandmothers had experienced painful periods also. The
symptoms of endometriosis pervaded these women’s
lives, affecting everything from their work to relationships
to future plans for conception. Women told of losing jobs
because of having to take too much sick leave. A number
of women reported marriage breakdown because it was so
hard for partners to live with the constancy of the disease.
Most women indicated they struggled to lead normal
lives, and not to let this disease take over their sense of
self.
Depression
A serious problem for many sufferers of endometriosis is
the development of depression. One young woman told
the group that she had been diagnosed as suicidal depres-
sive, and others had thought of suicide at some time. Many
women indicated that the struggle is compounded by
workplace discrimination issues and by being judged a
hypochondriac by family members: ‘always ill with some-
thing!’ Marriage breakdown and loss of partners and
friends is serious. The majority of sufferers indicated they
felt alone in a hostile world since the health professionals
who could legitimise their symptoms were dismissive of
them and it seems that it seems that the damage to self-
esteem done by the disbelief of health-care professionals is
quite significant. A large number of the women reported
feeling worthless and hating being compared to other
women who are able to manage monthly periods and get
on with life.
Those women whose endometriosis had rendered them
infertile indicated they resented the judgement that
women with no children are not real women, that they
have failed in life’s purpose. One woman said she felt
angry at the current Australian Federal Government’s
‘baby bonus’ for women with new babies, stating that her
tax is rewarding women for doing the very thing that has
been taken from her. She considered that Government
resources should also be put to use in the area of research
and treatment of endometriosis.
Table 1
Focus group demographics (
n
=
61)
Variable
n
Age
20–24 5
25–29 10
30–34 19
35–39 9
40–44 9
45–49 6
50–54 2
55–59 0
60–64 1
Location
Victoria
City 44
Regional 4
Rural 4
Interstate
Qld 1
NSW 6
SA 2
6 H Cox
et al.
The doctor trail
Almost every woman spoke at length of the years spent
‘doctor shopping’ to locate a doctor who would be sym-
pathetic to her plight, who would listen and believe her.
The subthemes that arose under this main theme were ‘GP
trauma’ and ‘The specialist/non-specialist gynaecologist’.
GP trauma
Four women spoke about dealings with sensitive GPs. This
was unusual because, in the main, women spoke of diffi-
culties encountered with GPs. One woman told of the 12-
year trail she had been on before she found a GP who
would take her complaints seriously and not dismiss her
symptoms as period pain and something she just had to
put up with. Another told of the more than 100 GPs she
had visited in the same search, and always, she said, she
ended up feeling ‘the victim of their disbelief and trivial-
isation’. Almost all women had experienced doctors who
told them they were ‘too young to have endometriosis’.
One woman related a history of severe pain even while in
early high school. Her GP told her repeatedly that it was
‘in my head’ and it was not until she was 21 years of age
that she was diagnosed with endometriosis. Sometimes
women recalled the questions that they had been asked,
and their impression was that GPs did not ask the right
questions, so that the reality of their situation was not
uncovered. Some women expressed surprise that the
female GPs they had consulted were not any more helpful
than the male GPs. One female GP who knew that her
patient had been diagnosed and treated for endometriosis
said, when told the symptoms were coming back, that this
was ‘highly unlikely’. Indeed, the patient’s endometriosis
had returned and further surgery was required.
Women told of how doctors refused to give referrals
because they simply did not believe them. In one instance,
a young woman whose mother had endometriosis sug-
gested to her GP that she too might have symptoms of the
disease. She was told it was highly unlikely, and her GP
was reluctant to refer her on to a specialist. She was told
‘let’s see what happens’, and she put up with her symp-
toms for many years before finally insisting on being
referred to a specialist. The specialist diagnosed her with
stage 4 endometriosis and told her that this meant
endometriosis had ‘glued her insides together in a chaotic
mess’, with the result that she was required to undergo
quite radical surgery.
Another young woman who had complained of symp-
toms for 2 years was told to settle into her new marriage,
get her life together and come back in 12 months. This
‘getting married and having kids’ attitude to solving
gynaecological problems appears widespread among GPs.
If there are benefits of pregnancy for women with
endometriosis, these were not explained to participants of
the focus groups, who indicated they felt fobbed off. Par-
ticipants expressed that they sensed there is an attitudinal
problem that GPs generally have toward ‘women’s
problems’.
The specialist/non-specialist gynaecologist
Whether or not they had undergone a long journey to be
referred to a specialist, the majority of women from the
focus groups did not necessarily find their problems with
doctors to be over. In many cases, gynaecologists them-
selves had no specialised knowledge of endometriosis.
One woman said that her surgeon ‘burned bits of
endometriosis’ during laparoscopy, but did not persist
with the diathermy, considering it to be too severe a treat-
ment. However, the gynaecologist did not refer the
woman to an expert, so there was no further follow up of
this woman and her persisting symptoms. Some of the
women from the focus groups said they had undergone
quite radical surgery without any of it making a difference
in the longer term to their physical symptoms, and sub-
sequent consultations with endometriosis specialists left
them in some doubt that the radical surgery had been the
right treatment decision. In a number of instances, the
women felt that gynaecologists who did not specialise in
endometriosis shared the GP’s attitude of dismissing their
symptoms and trivialising their problems.
Some women spoke of the blunt way in which they
were told that they had endometriosis. They said there
appeared to be no empathy from some doctors and the
women indicated that they felt that this was related to the
doctors’ lack of detailed knowledge about the condition,
how severe symptoms can be and the ramifications for the
future lives of these women and their partners. One
woman who consulted a gynaecologist in a regional area
said that this gynaecologist, a woman, told her that her
choice would be ‘to become a lactating female, meno-
pausal or turn into a man’—and this at the age of 19. She
was given no information and no options, and eventually
moved to the city to try to find help to better manage her
life.
Having mentioned these problems, the women’s com-
ments indicate that there was nowhere near the level of
discontent with gynaecologists as there was with GPs.
Focus group study of endometriosis 7
Nevertheless, it was with great emotion that many of the
women spoke of finding gynaecologists who had specialist
expertise in endometriosis. The relief of being diagnosed
and of having someone able to explain their symptoms,
the nature of the disease and the treatment options was
tremendous and lifted a serious burden from the minds of
these women.
Taking control
Women in the focus groups indicated that they took seri-
ously the decision to have an operation and that they liked
to be in control of what happened to them when possible.
One woman said that she had no intention of being ‘cut up
again’. She indicated that she feared adhesions developing
that would prevent pregnancy, and at the time of the focus
group was intensely focused on her fertility. This woman
indicated that she felt cheated and was resisting any sug-
gestion of succumbing to the disease, ‘normal’ treatments
(hysterectomy) or anything that might suggest the disease
could win over her desire to have a child.
A number of women who participated in the focus
groups managed, despite the odds, to take back control
of their lives. These women indicated that this was a
long and difficult road, and that they recognised not all
women would be able to achieve this. These women also
indicated the personal struggle they had had to go through
to gain strength for battle, and that they wanted women
who followed them not to have to learn to be strong
through such adversity. The sub themes in this category
were ‘Undoing the damage’, ‘Setting goals’ and ‘Becoming
assertive’.
Undoing the damage
The damage that occurred through GPs not listening, not
taking symptoms seriously, trivialising these women’s
experiences and telling young women that their symp-
toms were ‘in their heads’ was deep and serious. From
women’s accounts, the emotional backlash seemed to take
a great deal of time and effort to undo—if indeed it was
ever undone. The women who had learnt to take control
reported that they had done so because they had no choice
in the end. They had to force doctors to listen, force doc-
tors to refer them to the gynaecologist of their own
choice, force employers to be just in their dealings with
them, and force their partners and friends to listen and to
be compassionate. They got angry. Having decided that
they would no longer put up with being treated badly,
they sought information. Armed with as much informa-
tion as possible, they then made their demands and
insisted on being heard. Where they were still not listened
to, they switched GPs or specialists; they demanded good
care and kept up the search until they got what they
needed. A number of women said that after locating the
right consultant, they returned to their GP only for
scripts. They were clear about what they wanted, asked
for it and left—they never discussed what was happening
in their care or treatment, having decided that there was
no point in consulting a GP for this aspect of their health
care.
Setting goals
Each of the women in the focus groups indicated that she
set a particular goal, or goals, for herself. For most, the
main goal was to be drug free but at the same time receive
good pain management. Another woman set her goal as
getting off ‘the medical roundabout’; she indicated that
she did this through natural therapies, diet and spiritual
healing. She said that endometriosis had destroyed her
relationships and changed her life, and that she could see
ongoing surgery would produce more of the same. When
doctors indicated that she needed radical surgery to
‘remove everything’, she decided that she had had
enough. At the time of the focus group she stated that
most of her symptoms had subsided, and she was manag-
ing life well, in general.
Becoming assertive
Analysis of the women’s responses showed that one of the
things that started women on the road to assertiveness was
recording their symptoms, locating their patterns and
realising that their symptoms were cyclical and had a basis
in physiology. Their statements revealed how they first
began to believe what they were feeling and started to rea-
lise that they did really know their own bodies and could
trust the judgements that they were making about what
was happening to them. This led the women to start
rejecting what they were being told by those who were
dismissive of them. They said that now they could name
their experience and that previously they were being bul-
lied, and further explained that emotionally they grew
stronger with this knowledge.
The women expressed that realising they were ulti-
mately in charge was liberating. This is not to say that life
had become easier, but that they no longer put up with
treatment that was less than they required and demanded.
An outcome of this in the focus groups was the recogni-
8 H Cox
et al.
tion by women that they could be responsible for some of
the ‘spreading of the word’, ensuring increased public
awareness and encouraging young women to seek help
rather than thinking that their pain was period pain and
therefore ‘normal’. Some women spoke of how they could
play a role in educating their GP by passing on useful
information they had located, thus helping other women
to get better care.
DISCUSSION
The information gleaned from the five focus groups high-
lights a number of issues for women with endometriosis.
These can be grouped as:
1.
The difficulty in locating information about
endometriosis and the need for information, not only for
women who have or might have endometriosis, but for
partners, employers and others.
2.
Lack of knowledge and negative attitudes of GPs and
non-specialist gynaecologists, and the resultant trauma
and depression experienced by the women.
3.
The difficulty of learning to take control of their lives
and be assertive in relation to communicating with health
care professionals.
The information given by the women in this study pre-
sents a stark picture of marginalisation, loss, struggle and
grief, and it is a picture that is similar for women in other
countries. Studies in the United Kingdom,
3
New Zealand
5
and the USA
6
have found that women experienced:
(i) delays in diagnosis; (ii) chronic pain; (iii) multiple
laparoscopies and infertility; and (iv) loss of career and
relationships.
Other studies have reported similar experiences
regarding GP knowledge of and attitudes towards
endometriosis. The somatisation experienced by women
in Ballweg’s study was perhaps more extreme than that
experienced by women in the present study, but the triv-
ialisation and dismissal of their problems was the same,
and sometimes occurred for similar reasons.
4
In addition, GPs’ empathy towards sufferers has been
called into question in this study. Montague and Wood
found that only a minority of doctors held negative,
woman-blaming attitudes towards patients with
endometriosis, with most demonstrating a sympathetic
understanding of the broad range of problems and their
implications for women with the disease.
4
It is worth reit-
erating, since this is not what women in this study
reported, the possible skewed nature of the composition
of the focus groups. Women who had experienced signif-
icant problems with doctors may well have been the
majority of those prepared to attend the focus groups spe-
cifically because they wanted to voice their frustration,
and they may have been a minority in respect of the
respondents to the survey.
Much of what was uncovered in these focus groups can
be alleviated with knowledge, understanding and compas-
sion. The information presented in this paper is important
for nurses in that it will help them to gain an understand-
ing of what many women with endometriosis go through
in their journey to diagnosis and treatment. It is hoped
that such understanding will encourage nurses to be
compassionate when dealing with these women in any
context.
Future directions
The information collated from the focus groups strongly
suggests that we have only scratched the surface of difficult
and, at present, apparently unavoidable experiences for a
number of women. The women in this study were ada-
mant about the need for health professionals to be better
educated about endometriosis, and for the production and
dissemination of information not only to women with
endometriosis but also to teachers, employers, partners
and family members.
The researchers have taken a number of positive steps
in response to the findings of this study. Among these are:
1.
The production of a booklet about endometriosis, to
be distributed via the Endometriosis Association (Vic).
2.
Journal articles written to target GPs and
gynaecologists.
3.
Information distributed through GP division
newsletters.
4.
Targeted conference presentations to provide feedback
of results to relevant professional groups and to consumer
groups.
Further research studies are planned, particularly in
the areas of quality of life, and developing partner/
employer knowledge about endometriosis and empathy
towards sufferers.
ACKNOWLEDGEMENTS
The Commonwealth Department of Health and Aged
Care Consumer Focus Strategy aimed to strengthen the
role of consumers in health service planning, delivery,
monitoring and evaluation. To document good practice in
consumer involvement and to demonstrate, promote and
refine resources developed under the Strategy, a series of
Focus group study of endometriosis 9
small grants were provided to local partnerships of con-
sumers and health providers.
This study was funded by the Department of Health
and Aged Care as part of the Consumer and Provider Part-
nerships in Health (CAPPS) Project series, which were
designed to further develop the evidence base underpin-
ning effective consumer participation.
The authors also acknowledge Margo Sheahan, the
Care Evaluation Coordinator at Epworth Hospital, and
the members of the CAPPs Study Steering Committee, in
particular Ms Terri Punshon, the Facilitator and the Exec-
utive of Epworth Hospital, who supported this study in its
entirety.
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What Is Endometriosis?
Melbourne: Endometriosis Association (Vic), 2000.
[Accessed July 2001.] Available at: http://
www.endometriosis.org.au/savvyendosite/whatisendo
2Zreik
T
, Olive
D
. Pathophysiology: The biologic principles
of disease.
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1997;
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3 Carlton
D
. Awareness of endometriosis.
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: 514–515.
4 Montague
M
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