Access to Breast Cancer
Screening Programs
for Women with Disabilities
Maria Barile
Action des femmes handicapées de Montréal
with the collaboration of l’Équipe Cancer de la
July 2003
This project was funded by Programme de contribution pour la santé des femmes
(Santé
Canada) & Canadian Research Institute for the Advancement of Women/
l'Institut canadien des
recherches sur les femmes (CRIAW/ICREF)
TABLE OF CONTENTS
ACKNOWLEDGEMENTS
1. INTRODUCTION
1.1 PROGRAMME QUÉBÉCOIS DE DÉPISTAGE DU CANCER DU
SEIN (PQDCS)
1.2 ACTION
DES FEMMES HANDICAPÉES DE MONTRÉAL (AFHM)
1.3 OVERALL GOALS AND OBJECTIVES
2. SCREENING ISSUES FOR WOMEN-RELATED CANCER: WOMEN WITH DIS ABILITIES
3. CONTEXT OF THIS EVALUATION
3.1 CONCEPTUAL FRAMEWORKS
3.1.1 Participatory Action Research
3.1.2 Emancipatory Research
3.1.3 Processus de production
du handicap and Universal
Accessibility
3.1.4 Universal Accessibility
4. METHODOLOGY
4.1 PROCESS AND QUESTIONNAIRE DEVELOPMENT
4.2
ON-SITE VISITS
4.3 LIMITATIONS
OF THE EVALUATION
5. RESULTS AND DISCUSSION
5.1 LOCATION AND
EXTERIOR FACTORS
5.1.1 Location
5.1.2 Adapted Transit
5.1.3 Parking
5.1.4 Entrances
5.1.5 Doors
5.1.6 Signs Indicating Location of Centres
5.1.7 Elevators
5.2 DOORS
5.3 WAITING ROOMS
5.4 CHANGING ROOMS
5.5 WASHROOMS
5.6 MAMMOGRAPHY
ROOMS
5.6.1
Mammography Equipment
5.7 OTHER EXAMINATION ROOMS
5.7.1 Ultrasound Examination Room
5.7.2 Biopsy Room
5.8 WRITTEN AND AUDIO-VISUAL AND OTHER FORMS OF COMMUNICATION
5.8.1 Consent Form
5.9 TELEPHONES
5.10
Greeting and Attitudes
5.11 Communication
6.
CONCLUSION
6.1
SUMMARY
OF DATA
6.2 GENERAL CONCLUSION
Annex 1: Addendum to Data
BIBLIOGRAPHY
ACKNOWLEDGEMENTS
The
health committee of Action des femmes handicapées
de Montréal (AFHM) would like to
acknowledge the contribution and collaboration of the following individuals
and organizations to
this project:
The
women with disabilities (the evaluation agents):
● Chantal Bolla (Centre Fil d’Arianne)
● Mélanie Boucher /Denise Monette (Le Regroupement
des aveugles et amblyopes du Montréal
métropolitain) (RAAMM)
● Virginie Savaria (Maison
des femmes sourdes) / Nicole Tessier (Alpha Sourd)
This
evaluation would not have been possible without the input of these women with
disabilities.
The
above women were pro-active in asking challenging questions. This report is
by and about all
of us.
The
following people:
● Sujata Dey, originally
hired as “support agent” for one member of our team, who, in the end,
gave support
to each member of the evaluation team; her extraordinary and tireless assistance
was indispensable
during and after the evaluation
● Renée Ouimet and
Johanne Marcotte (La table sur le dépistage du cancer du sein de Relaisfemmes)
for their
constant support and encouragement, for their suggestions in the
development and implementation of the project, for the long hours that they
spent with me
summarizing the results and for correcting the work done in French
● Diane Ouellet, Lynda
Lynch, Michel Malo, Marie-Irène Polivka,
Annick Landreville and
Michèle Deschamps (Équipe cancer de la Direction de santé
publique Montréal-Centre) for
their collaboration
with providing access to the radiology and investigation centres,
coordinating the appointments, providing technical, secretarial assistance and
much more
● The members of the Advisory Committee: Linda
Ouellet, Marie Fafard, Chantal Bolla,
Suzanne Lavallée, Lorraine Doucet,
Anita Matheson, Michèle Blais and Abby Lippman for
their individual
and collective advice, for their support and for revising the questionnaire
The following organizations:
●
The board members of AHFM 2000-2003 who supported this initiative
from the start
●
Representatives of the Service interprétation
visuel et tactile (SIVET)
for providing the
langue des signes
québécois (LSQ) interprétation, Centre Fil d’Arianne, Maison des femmes
sourdes and Alpha Sourds
● Last but not least, the management and staff of the radiology
and investigation centres who
patiently
facilitated our evaluation
This
project was made possible with the financial support of the Canadian Research
Institute for
the Advancement of Women/ l'Institut
canadien des recherches sur les femmes (CRIAW/ICREF)
and the Programme de contribution pour la santé des femmes
(Santé Canada).
Author’s notes:
In this report:
Deaf: will have a capital
D to denote women/people who see themselves as part of a linguistic
and cultural
minority. This is different than people who are deaf (small d) or who
have hearing
impairments.
We: refers to the primary author who assumes the role of representative of
Action des
femmes handicapées de
Montréal except on paged 11 and 15, where we refers to both
the author and representatives from the Table
sur le dépistage du cancer
du sein de
Relais-femmes
1. INTRODUCTION
Equal access to health services for women with disabilities is a constant
concern throughout their
life cycles.
Often, women with disabilities are denied services provided to women simply
because
these services are “unintentionally” geared to non-disabled women. In some
cases, as in
the case
of breast-cancer screening, this inequality of access for all women with disabilities
can
have life-threatening
consequences.
The statistics show that in the area of breast cancer screening, women with
disabilities are
constantly
under-served.
Overall, women who are not disabled receive mammograms 11% more than women
with
considerable limitations. (National Women’s Health Information Centre, 1999)
As well:
Inaccessible health care facilities and medical equipment prevent women with
disabilities
from getting mammograms. Furthermore, health care providers do not encourage
women
with disabilities to get screened focusing instead on the medicalization of disability and
not
on the health conditions they face as women (1999).
This
has significant consequences as women with disabilities do not have equal
access to cancer
screening
that could prevent mortality.
In
this context, AFHM wanted to evaluate the accessibility of the Québec based
program, the
Programme québecois de dépistage
du cancer du sein (PQDCS) in Montréal for women
with
diverse
disabilities. The ultimate goal of this project was to ensure that women with
disabilities
have the
same choices, opportunities and available resources for breast cancer screening
as other
women.
The
secondary goal was to ensure the participation of women with disabilities
in the design,
development and implementation of this project and to involve the women in a
process of
information and education.
This
project was conducted by AFHM in collaboration with La table sur le dépistage du cancer
du sein de Relais-femmes and l’Équipe
Cancer de la Direction de santé publique (DSP)
Montréal-Centre.
1.1 Programme québécois de dépistage du cancer du sein (PQDCS)
In 1998, the ministère de la Santé et des Services
sociaux du Québec (MSSS) implemented the
PQDCS.
The purpose of this program is to decrease mortality related to breast cancer
by 25%
between
1998 and 2008 among women aged 50 to 69 years. The services provided by the
PQDCS
are free of charge and aims to be accessible to all women living in the province
of
Québec.
Every
two years, all women between the ages of 50 and 69 receive a letter from the
Regional
Coordination
Centre of the PQDCS inviting them to have a mammogram in a Centre de dépistage
désigné (CDD) which is basically a radiology clinic. After agreeing
to participate in the program,
the women
and their doctors receive the results of their mammogram by mail.
If
the results are abnormal, they are referred to an investigation centre or
Centre de référence pour
investigation désigné (CRID) for further diagnostic procedures.
In Montréal, fourteen CDD and
five CRID
are part of the PQDCS. The CDD are private radiology clinics whereas
the five CRID
are located
in public hospitals. The mammogram and diagnostic examinations are covered
by the
Régie de l’assurance-maladie du Québec (RAMQ).
For
more details on the program please consult the following web page:
Cancer du sein: Programme québécois de dépistage du cancer
du sein
(http://www.santepub-mtl.qc.ca/cancer/cancersein/depistage.html)
1.2 Action des femmes handicapées de Montréal (AFHM)
AFHM
is a feminist organization created in the wake of the foundation of the Dis-Abled
Women’s
Network in 1985. One of the organization's main aims is to bring women with
disabilities together to facilitate the development of their fullest potentials
through collective
action.
AFHM is comprised of women with all types of disabilities coming from diverse
cultural
backgrounds and all levels of society.
The
organization's health committee aims to look at health issues, which affect
women with
disabilities-- especially ones that touch on their overall health as women.
The
health committee’s goals are to:
1.
conduct research on the health of women with disabilities;
2. demand that women with disabilities be given complete
information on all aspects of their
health;
3. continue to demand that health services be made
accessible to women with disabilities
(www.afhm.org).
After
all:
Women
with disabilities are faced with many stereotypes. It's important that everyone,
including health care professionals, understand that having a disability is
not the same as
being ill. Women with disabilities are women first. Women with disabilities
have as much,
if
not more need to be proactive about their overall health. (Chytilo, J
citing Edward, C.
retrieved
2003)
1.3
Overall Goals and Objectives
The
specific objectives of our evaluation were to:
●
identify the facilitators and barriers to the CDD and the CRID for women with
various
disabilities;
● inform women with disabilities about the CDD and the CRID that are
currently accessible to
women with
disabilities in the region of Montréal;
● suggest architectural and/or technical changes to improve access to
women with various
disabilities;
● sensitize PQDCS decision makers to the factors that need to be taken
into account in
evaluating
the accessibility of the CDD and the CRID;
● sensitize CDD and CRID managers and staff to the special needs of
women with disabilities
and suggest
ways to reduce or eliminate barriers to access.
2. SCREENING ISSUES FOR WOMEN-RELATED CANCER: WOMEN WITH DISABILITIES
Breast
cancer is the most frequent cancer experienced by women. It accounts for 30%
of all
cancers.
In Canada, more than 20,000 women have been diagnosed with breast cancer in
2002.
Five
thousand women have died from this disease. Overall, one woman in nine is
expected to
develop
breast cancer during her lifetime. (Canadian Cancer Society, 2003)
The
probability of developing the disease increases as follows with age:
● at 25: 1 in 19,608 woman are affected
●
at 40: 1 in 217 woman are affected
●
at 50: 1 in 50 woman are affected
●
at 60: 1 in 24 woman are affected
●
at 70 :1 in 14 woman are affected
●
at 85: 1 in 9 woman are affected
(Régie régionale de la santé et des services sociaux de
Montréal, (undated).
It
is not clear if general data on breast cancer includes women with disabilities.
To the best of our
knowledge,
there appears to be neither statistical information showing incidents of breast
cancer
among women
with disabilities nor comparison studies on breast cancer among disabled and
nondisabled
women.
However, published reports and papers concerning these issues provide some
compelling
facts.
First,
an increasing number of women with disabilities live to an age where menopause
and
interrelated issues need to be examined (Welner, Simon,
& Welner 2002), the same age group
generally
identified as having a higher incidence of breast cancer and cancer of the
uterus
(Goyon, 1996). In Québec, the number of women with disabilities
begins to rise in the 35 to 54
age bracket
(OPHQ, 1997). Some impairment specific information is emerging. As reported
by
Brown
and Murphy, "Women with Down syndrome and women with epilepsy may reach
menopause
at an earlier age than women in the general population” (retrieved, 2003).
This then
may imply
that women with the above-mentioned disabilities should be screened for womenrelated
cancers
at the onset of menopause.
Secondly,
women with disabilities face social problems such as lack of access and lack
of public
awareness.
These social problems are now emerging in all area of women’s health. The
National
Women's
Health Information Centre (1999) reports that when women with disabilities
go to
clinics
for breast exams, many of them cannot receive services because of inaccessible
health care
facilities
and medical equipment. As well, a Toronto-based study shows that of 210 women
with
disabilities, 38.3% reported difficulties accessing the equipment in their doctor’s
office (Riddle et
all, 2003
p. 4).
Thirdly,
even if equipment were accessible, a general lack of awareness by health care
providers
emerges:
“Health care providers are not trained to look at broader issues for women
with
disabilities. They tend to focus more on women with disabilities’ physiological
or pathological
problems
rather than considering their environmental limitations such as access to
clinics and to
appropriate medical equipment” (National Women's Health Information Centre,
1999). Or: “They
are more
concerned with the problems related with the disability than screening and
therefore, do
not encourage
women to participate in screening activities regularly” (1999).
As
a result, women with disabilities do not seem to be receiving mammograms or
other womenrelated
prevention
tools at the same rate as other women. In fact:
●
disability was a significant independent risk factor for not
receiving mammograms and Pap
smears
(Riddle et all, 2003 p5);
● only 13% of learning-disabled women who were eligible for cervical
cancer screening had a
record
(of having had one) in (the) previous five years. This compared poorly with
the
remainder
of women in the district, 88% of whom had Pap smears (2003 p.5);
● “l'efficacité du suivi médical et de la prévention en matière de
santé dépend de nombreux
facteurs. Une étude
américaine montre que les femmes avec une sclérose en plaques (SEP) et
des difficultés motrices
reçoivent moins d'examens préventifs comme des frottis cervicaux ou
des mammographies d'une
manière générale. Les auteurs ont pu noter que les patientes avec
une mobilité très réduite
avaient moins tendance à avoir eu un frottis (cinq fois moins
environ) ou une mammographie
(trois fois moins) que celles qui se déplaçaient sans
difficulté” (Des difficultés
de mobilité constituent-elles un frein au suivi médical? (on-line,
2003).
Most
worrisome is that women with disabilities are not identified as an under-served
population
for the
purposes of breast cancer screening. Therefore, they are not specifically
targeted in
education
and outreach efforts by breast cancer organizations. Together, these barriers
may
contribute
to the delayed diagnosis of breast diseases in women with disabilities (Breast
Health
Access
Online, 2003).
3. CONTEXT OF THIS EVALUATION
This project was initiated when
La table sur le dépistage du cancer du sein de Relais-femmes
invited
AFHM to attend a meeting on breast cancer screening. During the meeting, issues
related
to accessibility
were discussed.
As
a result of these discussions, we decided to make telephone calls to determine
the CDD
accessibility to women with disabilities. A short questionnaire was developed
(Appendix 1) and
telephone
calls were made to six of the 14 CDD. The results of this survey indicated
that:
●
none of the CDD had any information in Braille, on tape, or
in large print; thus, they did not
have information
accessible to women who are blind/visually impaired or to women who are
illiterate;
● none of the CDD had Text Telephone (TTY)
(also known as a TDD or Telephone Device for
the Deaf)
to accommodate women with hearing impairments wishing to book an appointment;
● five of the six CCD were accessible by the
front door but only one had an accessible back
door. No
other accommodation was provided for women who use wheelchairs or for women
with other
mobility disabilities;
● five did not know if the mammography machine descended; one said it
didn’t descend;
● the CDD staff seemed uninformed about the specific needs of women
with various types of
disabilities.
Based
on these preliminary data, AFHM applied to CRIAW and was successful in securing
a first
grant.
With the
support and collaboration of La table sur le
dépistage du cancer du sein de
Relais-femmes, AFHM
sought further funding to collect comprehensive data on the CDD and the
CRID accessibility to women with disabilities. In December 2002, Dr. Abby Lippman assisted us
in securing
funding from the Programme de contribution pour la santé des femmes
(Santé
Canada).
3.1
Conceptual Frameworks
This
evaluative research was guided by components of the following concepts:
●
participatory action (Maguire, 1987);
●
feminist standpoint research (Harding, 1987; Hartsock, 1987; hooks, 1984);
●
a few components of emancipatory
research (Oliver, 1997; Barnes, 1997);
●
the Processus de production des handicaps (Fougeyrollas, 1996);
●
principles of universal accessibility (Connell, Jones et al.,
2003).
3.1.1 Participatory Action Research
Participatory
action research is committed to helping people discover and understand the
contradictions in society and how these contradictions relate to their own lives
and involves,
according
to Maguire (1987), three major tenets:
Social investigation that aims at collectively investigating things
as they are. The
persons being
researched
play active roles in naming their specific reality including the questions
asked and how
the information
is gathered. The objective is to investigate reality in order to bring about
change.
Education
that involves sharing the social knowledge and skills gained with participants
who also
actively
share their knowledge with the researchers. This is opposed to only recording
information or writing reports.
Action
that links what it finds (creative knowledge) with concrete action so that
researchers and
the persons
involved join together to plan to pursue action.
3.1.2 Emancipatory Research
Emancipatory research takes participatory action research one step further by
ensuring that
individuals who live in a specific situation are directly involved in all aspects
of the research.
Emancipatory research includes six components:
1.
conducted on and with people from a historically marginalized racial, ethnic,
or social group;z
2.
led by a researcher or research team who is either an indigenous
or external insider;
3.
interpreted within intellectual frameworks of that group;
4.
conducted largely for the purpose of improving education;
5.
engages members of the community as co-constructors or validators
of knowledge;
6.
[is known]… within numerous historically oppressed groups (no
author, 2003). (Background
on emancipatory knowledge).
Oliver
(1997) expresses the emancipatory model from a disability
position with the prerequisite
that people
with disabilities participate at all levels. According to Oliver, the following
six points
should
describe successful emancipatory research with people
with disabilities. That is, the
research
should be:
1.
a description of experience in the face of academics who abstract
and distort the experience of
disabled
people;
2. a redefinition of the problem of disability (redefine
disability away from being individual
positivist -or welfare problem, to one constructed by lack of access, restrictive
policies etc. thus
redefining it politically);
<