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);
3. a challenge to the ideology and methodology of
dominant research paradigm;
4. the development of a methodology and set of techniques
commensurate with emancipatory
research
paradigm;
5. a description of collective experience in the
face of academics who are unaware or ignore the
existence
of the disability movement;
6. a monitoring and evaluation of services that are
established, controlled and operated by
disabled
people themselves.
Oliver
further locates this mode of research in critical theory and within the social
model of
disability
thereby keeping away from a positivist perspective. Similarly, Barnes, Mercer
(1997)
state that
emancipatory research is politically committed.
Due
to the nature of the present evaluation, only three of the six points expressed
by both authors
(unknown and Oliver) were achieved:
●
women involved in conducting the on-site visits were women
with disabilities;
● the community initiated the evaluation;
● members of the community were engaged in
part, as co-constructors or validators of
knowledge.
Experimental
knowledge is both vital and consistent with the feminist standpoint perspective.
The
standpoint
of women who live in specific situations is central to the methodology of
participatory
action
research and emancipatory research. The consultation
undertaken during the second phase
of the
questionnaire is consistent with feminist standpoint research (Campbell and
Bunting,
1991).
3.1.3 Processus de
production du handicap and Universal
Accessibility
P.
Fougeyrollas developed the Processus
du production du handicap
in 1980. In developing the
questionnaire, we have used only one component known as situations de handicap.
Situations
de handicap is defined
as a reduced ability to perform daily activities that result from
the interaction
between personal and environmental factors defined as facilitators or barriers
(Lemieux-Brassard, 1996). Environmental barriers are elements
that reduce the capacity of
individual
to carry out activities of daily living. Facilitators are elements
that facilitate execution
of these
activities. For example, buildings that have stairs without an added ramp
create a barrier
for people
using wheelchairs and for parents with baby strollers. A ramp is a facilitator
for people
who use
wheelchairs and for people who push baby strollers and carts.
A
facilitator for one person can be a barrier for another; a radio
may be useful for people with
visual
disabilities to obtain news. It is, however, a barrier for people with
hearing disabilities. A
Web
page with photos can be a facilitator for a person with reading-based
disabilities but it is
inaccessible to blind people.
The
questionnaire, (Appendix 2) was developed using situations de handicap
of the Processus de
production du handicap
model (PPH). (Fougerollas, 1996)
3.1.4 Universal Accessibility
Universal accessibility is the elimination of all environmental barriers for
all users, particularly
those with
mobility, visual, and hearing disabilities (Unofficial translation of Société Logique's
objectives).
Moreover, Connell, Jones et
al. (2003) identify seven
basic principles:
1.
Equitable use: Ideally, providing one means of entry to the building
that works well for
everyone
in terms of their privacy, security, safety and convenience.
2.
Flexibility in use: Flexibility should be built-in the design
to accommodate everyone
3.
Simple and intuitive all components from the faucet to the symbolisation should be easy to
operate
by everyone.
4.
Use perceptible information: It should ensure effective communication
with all users
regardless
of their sensory or cognitive abilities.
5.
Tolerance for error: It should anticipate accidental or unintended
actions by any user to
minimise the inconvenience and/or protect the user
from harm
6.
Low physical effort: The design should require little or no physical
force to be used.
7.
Size and space for approach and use: It should provide an adequate
amount of space so that
regardless
of someone’s position (eg. sitting, standing, etc.),
anyone could use it. It should
provide
a clear path for people to pass.
4. METHODOLOGY
4.1 Process and Questionnaire Development
This
project was put together by a working group that included members of AFHM
and two
members
of the Table sur le dépistage du cancer du
sein de Relais-femmes. Subsequently, the
DSP
Montréal-Centre assisted with the development and implementation of the project.
First,
the working group called a consultation meeting. A first meeting was held
in June 2002 to
identify
the problems faced by women having disabilities and to discuss the procedure
to collect
information on the CDD and the CRID’s accessibility.
We
called approximately ten groups representing different types of disabilities
to invite women to
participate in the project. Only the following responded: RAAMM, Le Fil d’Arianne and La
Maison des femmes sourdes.
Although
the goal was to have eight women representing eight different type disabilities,
we were
only able
to have the participation of six at the first meeting. As well, we had the
participation of
a parent
of a person with a developmental disability who works with l'Intégrale.
A representative
from La
Maison des femmes sourdes
was not present at that first meeting.
The
group identified numerous and diverse barriers reflecting the participants’
situations de
handicap. These included:
●
mammography equipment does not lower adequately to accommodate
a woman who uses a
wheelchair;
● examination rooms are not large enough;
● information providing directions to get to
the examination room is not adapted or not
available
to women with visual and/or hearing disabilities;
● medical forms are inaccessible to women with
various types of disabilities;
●
the attitude of the staff is problematic.
It
was agreed that a questionnaire would be developed in consultation with the
women at the
meeting.
It became clear that all the centres needed to be
visited and that women with different
types of
disabilities needed to be involved in the evaluation.
The
questions were not based on impairment (biomedical component) nor were they
split into
several
sections based on each impairment. Instead, the questionnaire was based on
situations de
handicap, as we were
looking for environmental barriers or facilitators. This allowed
women to
identify
barriers as they experience them. This is also consistent with the emancipatory model
wherein
we do not assume that a single barrier is unique to one specific type of disability
(i.e.
only women
with mobility disabilities experience barriers with building entrances).
Based
on the information provided at the meeting, a first draft of the questionnaire
was developed
during
the summer. The questionnaire was sent to four of the six women who participated
in the
June
meeting and to two other women who had expressed interest in collaborating
in the project
for their
comments. In the fall of 2002, the revised questionnaire was sent to La
table sur le
dépistage du cancer
du sein de Relais-femmes, the DSP Montréal-Centre, Dr. Abby Lippman and
to Sylvie
Gendron.
Since
some aspects could not be assessed through a visit, it was decided that a
second component
consisting
of anonymous telephone calls to the CDD and the CRID be included in the project.
The
DSP
Montréal-Centre funded this component of the project. Subsequently, the questionnaire
was
substantially modified and a telephone questionnaire was developed (Appendix 2).
The
DSP was concerned about the impact of the visits on the functioning of the
centres. In
particular,
the DSP questioned the pertinence of having eight women visiting a centre
at once.
After
discussions, the DSP representatives suggested that they would approach the
CDD and the
CRID to request their participation. Also, the DSP would carry out a preliminary
assessment of
access
for women with physical disabilities within their own already-planned evaluation.
It was
also agreed
upon that four women representing the disability groups (Deaf, mobility,
blind/visually
impaired, developmental disabilities) would participate in the visit of the
centres.
A
meeting was held on January 9, 2003 funded by Health Canada’s Programme
de contribution
pour la santé des femmes
and CRIAW.
This meeting was attended
by:
●
the evaluation agents-- women representing all four major disability
groups (Deaf, mobility,
Blind/visually
impaired, developmental disabilities);
● two representatives
of the La table sur le dépistage du cancer du
sein de Relais-femmes ;
● a representative of the DSP;
● the woman who would act as support agent
for the agent representing women with
developmental disabilities;
● two LSQ interpreters (Langue des signes québécois)
During
the meeting, a brief presentation of the Processus
de production du handicap was given.
The
questionnaire was reviewed and the evaluation agents’ questions and concerns
were
answered.
Questions were reformulated or removed and new questions were added. The
questionnaire was made more accessible to women using alternative formats such
as the ASCII
format.
The final version of the questionnaire included 12 sections with a total of
175 elements
that covered
all possible environmental barriers to women living with different disabling
barriers
(Appendix 2).
In
February 2003, a mid-term meeting was held to ask evaluation agents how they
felt about the
process
and to clarify the objectives of the visits. Overall, they said the questionnaire
was too long
and difficult.
It was decided that evaluation agents would complete only the questions relevant
to
their situations
de handicap. However, all of them were encouraged to elaborate more in
their
comments.
4.2 On-Site Visits
The
visits were scheduled by members of the DSP and were conducted between January
15 and
April
3, 2003. Eleven of the 14 CDD and all five CRID accepted to participate in
the project.
Three
CDD did not participate. Reasons cited for not participating included a specialist
strike in
December
that impeded regular workings of the clinic, lack of physical access, the
planning of
major renovations
and the inability to accommodate women who were not autonomous.
Between
January 17 and 20, 2003, we faxed a letter (Appendix 3) to the 14 CDD. Two
centres
called
us back within the first week. It became evident that the collaboration of
the DSP/PQDCS
was instrumental
in the outcome of this project.
The
women with disabilities then conducted evaluations of the centres.
From this point on, they
will be
referred to as agents representing women with mobility, blind/visually impaired,
Deaf, and
developmental disabilities.
Four
evaluation agents representing Deaf, mobility, blind/visually impaired and
developmental
disabilities conducted assessments of the centres.
Two women shared the tasks of the evaluation
agent representing
blind/visually-impaired women but only one would be present at each visit.
Both
agents representing blind/visually-impaired women had a guide dog.
The
original agent representing Deaf women left and was replaced by another Deaf
woman. Both
women communicated
with LSQ.
The
woman with a developmental disability was accompanied by a woman who acted
as her
buddy.
The women who acted as her buddy filled out the questionnaire with her after
each visit
and assisted
other agents when needed. Moreover, she shared her observational notes with
the
coordinator of the project.
The
coordinator of AFHM’s project had both mobility
and hearing impairments.
Typically, visits to the CDD and the CRID were conducted as follows:
●
the evaluation agents met at the front entrance and did the
assessment of the front entrance
and related
entrances, as well as the location of the centres;
● they took turns as the primary evaluator
who would play the role of the client;
● the primary evaluator introduced the team to the centre’s
representative;
● the primary evaluator asked questions pertinent to her disability
at each step of the process;
● the remaining evaluation agents followed
her asking questions pertinent to their disabilities.
For
the most part, the evaluation agents that conducted the on-site visits were
able to tangibly
assess
aspects of the clinics from the door to the actual mammography equipment,
focusing
specifically on the location of the equipment and on how it could be adapted
to suit their specific
needs.
However, the evaluation could not always be carried out identically each time.
In some
cases,
the women had the opportunity to ask questions not included in the questionnaire.
For
the last meeting, the members of Relais-femmes
in conjunction with the project coordinator
prepared
an up-to-date summary of the results which was sent to the evaluation agents
and the
advisory
board.
Two
of the evaluation agents gave a brief summary and overall
impressions of their experience.
Two
of the four advisory board members were present at the last meeting. One member
sent her
recommendations by e-mail prior to meeting. The evaluation agent representing blind/visually
impaired
women, the evaluation agent representing Deaf women and the remaining member
of
the advisory
board could not come. They have been asked to send their input by e-mail,
as well.
4.3 Limitations of the Evaluation
Some
of the limitations encountered during the process were the following:
●
there were only two days per week during which all of the evaluation agents
were available.
As
a result, co-ordination of the visits was rather difficult;
● the evaluation agent representing Deaf women
quit in the middle of the project and a new
agent had
to be trained. As a result, three visits had to be rescheduled;
● this new agent representing Deaf women became
sick. As a result, three visits were
rescheduled for that particular agent. However, because they were cancelled
at the last minute,
we still
had to pay the sign language interpreter;
● the job action by radiologists in December led to an increased
workload in the CDD in
particular;
● the spring break in March also affected the scheduling of the visits.
5. RESULTS AND DISCUSSION
The
results will be presented using in same categories as in the questionnaire
(Appendix 2) to
present
the results.
In
some cases, evaluation agents’ comments were used to illustrate specific issues.
We have left
their quotations
in French. Recurring comments are paraphrased and attributed to all agents.
To
truly reflect the spirit of the conceptual guidelines of this evaluative research,
we acknowledge
that women
with disabilities have diverse needs and respond differently to “disabling
situations”
(situations de handicap). Therefore, women with
similar disabilities as the agents may not
experience
the same barriers or facilitators. For example, what an evaluation agent marks
as a
barrier
may not be so for someone else with the same disability; conversely, what
agents may
have marked
as a bon coup (facilitator) may be a barrier for other women
with the same
disability.
Due to the diversity of disabilities in the evaluation team, items marked
as a barrier by
one evaluation
agent may be considered a facilitator or not applicable by others. This is
consistent
with the
Processus de production du
handicap model which says that what is a facilitator for one
person
may not be for another (Fougerollas, 1996).
One
important factor to note is that the agent using a wheelchair in this project
had a wheelchair
of 23 inches
in width. Therefore, items presented as adequate for someone with a wheelchair
of
this size
may be inadequate for anyone with a larger wheelchair.
In
looking at the environmental barriers we indicated whether something was universally
accessible.
Universal accessibility stipulates that all people using the premises
should be able to
use everything
in it with equal ease.
In
accordance with standpoint and emancipatory methods,
the voice of the individual living a
specific
situation is the best situated to identify and represent their reality at
a given moment.
Thus, it is important that the comments by women with disabilities herein
are understood as being
part of
their experience at a given moment. These cannot be interpreted or
generalized as existing
in all
the centres nor can these be interpreted from an
outsider’s perspective (i.e. by someone who
is not
a woman with a disability and who has not lived that reality).
5.1 Location and Exterior Factors
5.1.1 Location
● Seven of the 11 CDD were located in medical clinics. Three were either
in shopping centres
or in a
combined medical/shopping complex. All five CRID were located in university
hospitals.
● Ten CDD and five CRID were located within a short distance from a
metro station and all of
them had
at least one public transportation bus line at a nearby corner.
● One CDD was in a more remote location. All four agents used a private
adapted taxi to get to
that centre.
The
CDD located in shopping centres may be a barrier
for women with some types of disabilities
as exemplified
by the comments from the evaluation agent representing women with visual
disabilities and the agent representing women with developmental disabilities.
Ce complexe est facilement accessible soit en métro ou en
autobus. À moins de bien
connaître le complexe,
il est presque impensable qu’une personne aveugle puisse se
rendre seule à ce
centre. Le complexe compte plusieurs entrées et le centre est situé loin
d’une d’elles.
C'est difficile à trouver, si je suis seule, lorsqu'on vient
du métro. D'ailleurs, c'est difficile
à trouver [la clinique]
dans le complexe.
5.1.2 Adapted Transit
Being in hospitals, the CRID fall under the regulations for adapted
transit specific to hospitals.
They
include:
1) there is only one address specifically designated for each of the major
hospitals,.
2)
a person can only be picked up at the same entrance that they
are left at.
Only one of the CDD and three of the CRID had a visible panel indicating a
reserved door for
adapted
transportation.
5.1.3 Parking
Nine
of the 11 CDD had parking. Of these:
●
Only one had reserved parking for persons with disabilities
at an acceptable distance.
●
One had reserved parking for disabled people but it was further
away. Although it may be
acceptable
for someone in a motorized wheelchair, it is too far for women who use canes
or
walkers
etc. or for those use manual wheelchairs.
●
Two centres had indoor parking but it was reserved for people
who live or work in the
complexes.
●
Two of the CRID had parking reserved for persons with disabilities.
5.1.4 Entrances
In
order to be universally accessible women with disabilities must be able to
use all the same
entrances
as the general public. Ten of the 11 CDD had universally accessible entrances.
●
Nine centres had no stairs.
● In one case, the CDD had approximately ten
stairs but had an access ramp at one side of the
building
next to the stairs. The evaluation agent with a mobility disability made a
comment
about the
access ramp: “Le plancher
de la rampe a des trous. Cela peut être difficile pour
des femmes en chaise roulant
manuelle, parce qu’en montant, cela donne l’impression que
l’inclinaison de la rampe
est inégale, trop élevée.”
● Only one of the 11 CDD had stairs and no
ramp. In this centre, there were steps both outside
and inside
the main entrance.
● In one CDD, the entrance used by adapted
transport is different than that provided on the
address
list of the PQCDS. However, this was not an exclusive entrance for
people with
disabilities as it is used by the general public.
In
the case of the CRID, located in a university hospital, the entrances used
by the people using
adapted
transport are not always the same as the main entrance or the address specified
in the
PQCDS brochure. This was the case in three of the five CRID. These entrances complied
with
the notion
of universal accessibility since many people use them.
5.1.5 Doors
Six
of the 11 CDD had electric doors; four had regular doors.
●
In the CDD with regular doors, three CDD had glass doors; these were particularly
difficult to
open. Although
the handles were at reasonable heights, the glass doors were heavy. This could
be problematic
for elderly people, individuals with visual and mobility disabilities and
people
with packages
among others. During the visits, the driver of the adapted transport had to
open
the front
door which is not always the current practice.
5.1.6 Signs Indicating Location of
Centres
All
CDD had signs indicating the location of the centre; two were easy to read
and understand and
six were
difficult. In three centres, the clinic was located
very close to the elevator or entrance.
In
one case, although there is a sign at the front entrance, the name of the
centre was given by the
PQCDS
brochure is not fully visible. In this centre, near the back door next to
the adapted transit
drop-off
point, there was a security desk where one can ask for directions.
In
another case, the evaluation agent representing women with blind/visually
impaired disabilities
stated:
Sur le panneau indiquant la direction, il n’est pas inscrit
le nom du centre car celui-ci fait
partie d’un ensemble
de service dans une clinique qui porte un autre nom.
She presented
a possible solution: “Pour les personnes qui voient un peu, il y a un grand
panneau
près de la rue ce qui aide
à repérer l’entrée de l’édifice.”
The
signs indicating the location of the CDD in shopping centres
were the most difficult to find.
With
the CRID, hospital signage was sometimes complicated:
●
In four CRID, the various buildings were identified by alphabetical
designations which were
complicated.
● Three of the five CRID were located on floors other than the main
floor.
● Signs indicating the CRID were not clearly visible until we reached
the floor of the centre.
● Only one CRID was located on a first floor
near the main entrance.
5.1.7 Elevators
Six
of the 11 CDD and four of the five CRID required the use of elevators to access
the clinic.
●
Two CDD and one CRID had Braille characters on elevator buttons.
●
Two CDD and one CRID had a sound signals to announce floors.
●
None had voice synthesis.
One
of the CDD located in a shopping centre had elevators which, mostly due to
their
configuration, were not large enough to allow the four of access at the same time.
In
another CDD, the carpet in the elevator was not attached to the elevator floor.
This made the
movements
of the woman with an electric wheelchair difficult.
In
some cases, the elevator’s door closed quickly making it difficult for some
women to enter or
leave the
elevator. In three CDD and one CRID, the centres
were located on the main floor. Thus,
getting
there did not require the use of an elevator.
5.2 Doors
Five
of the 11 CDD had doors that were difficult to open.
●
In five others, the doors remained open during working hours
which facilitates access.
● One centre is located below some stairs in
close proximity to the waiting room.
Three
of the five CRID have doors that stay open.
● One has a door that was particularly difficult
for women with a mobility disability.
● The last CRID was divided into two buildings.
In the first building, there was no door. In the
second,
the door was more difficult to open by women with mobility disabilities.
5.3 Waiting Rooms
Some CDD had two types of waiting rooms: a primary waiting room where all
clients wait and a
secondary
waiting room specifically designed for women waiting for their mammograms.
In
seven of the 11 CDD, the primary waiting room was accessible.
●
However, in two of these centres, the arrangement
of chairs created barriers for women using
a wheelchair
23 inches or more in width.
●
Two other centres had small waiting
rooms.
●
In one of these CDD, the waiting room was too small for someone
in a wheelchair. In this
centre,
the agent representing blind/visually impaired women identified another barrier.
She
stated: “Le chien
ne peut se coucher sous la chaise puisqu’on occupe des fauteuils deux
places.”
Three
of the 11 CDD had waiting rooms specifically for women waiting for a mammogram.
● In one of these centres,
the waiting room was small and did not have enough light for a
hearing-impaired woman to lip-read when she was spoken to.
● In another case, although the room was large,
a coffee table in the middle made turning a
wheelchair
difficult.
● The third was large and spacious with good
lighting.
With
the CRID, hospital signage was more complicated.
● In two of the CRID, the waiting room was
large enough; however, the arrangement of chairs
restricted
access for women in wheelchairs. These chairs needed to be moved. In one case,
the waiting
room was right in front of the door to the reception area, making the waiting
room
too small.
● In a fourth CRID, the hallway was used as
a waiting room; needless to say, this is much too
small.
This is, however, temporary as they are awaiting construction of a new waiting
room.
● In the last CRID, there were two waiting
rooms both adequately large for a woman in a
wheelchair
to move in.
5.4 Changing Rooms
Ten
of the 11 CDD had very small changing rooms. In such cases, women who used
wheelchairs
would either
use the mammography room or another examination room to change.
●
In three cases, the agent representing blind/visually impaired
women found that the changing
room did
not allow enough room for her guide dog to enter with her. In these cases,
women
with guide
dogs (like women who use wheelchairs) would be instructed to use a
mammography room or another examination room to change.
● In two CDD, all women, regardless of disability,
used the mammography room as a changing
room.
Similarly,
in all the CRID, changing rooms were too small for women using wheelchairs.
In
some cases, they were too small for those with guide dogs. Again, women would
either use the
mammography room or another examination room to change. In most cases, lighting
in the
waiting
rooms was insufficient as noticed by the evaluation agent with a visual disability:
“L’éclairage dans les salles de déshabillage est faible.”
Staff
members in all CDD and all CRID can offer assistance in directing women from
waiting
rooms to
changing and mammography rooms. In two cases, where the women are called via
intercom,
Deaf/ hearing impaired women must notify the receptionist that they need to
be
approached
and not called over the intercom when the technician is ready to take them
to the
mammography room.
5.5 Washrooms
Only two CDD had large enough washrooms located within the CDD’s
premises.
These
washrooms had:
●
a door wide enough for the agent using a wheelchair to enter
easily;
●
enough space for an attendant to be present if necessary and
enough space for the door to
close when
the woman was inside;
●
adequate lighting;
●
grab bars;
●
a sink and an electric hand dryer or paper dispenser at an
adequate height;
●
enough room for the agent representing blind/visually impaired
women to enter with her guide dog;
●
a pictogram clearly indicating the women’s and men’s washrooms.
Three
CDD had partially adapted washrooms located outside the CDD premises. These washroom
were not
fully accessible because of one or more of the following elements:
● the toilet seat was too low;
●
the electric hand dryer or paper dispenser was too high;
●
they did not allow access to wheelchairs larger than 26 inches
in height;
●
the door was too difficult to close for any woman who cannot get in and out
of her wheelchair
on her
own ;
●
there was not enough space for an assistant;
●
the evaluation agent with developmental disabilities noted that the word toilette
was indicated
in letters
and not by a pictogram.
In
two other CDD, there were no adapted washrooms in the entire medical centre.
Three
other washrooms were located outside the CDD’s premises.
One had an accessible
washroom
located outside its premises on a different floor.
One
centre had a washroom designated as accessible that we could not verify as
the CDD did not
have a
key. We visited this centre two times and both times, the organization that
had the key was
closed.
The key was in the possession of an organization of persons with disabilities
located on
the same
floor.
The
washrooms in the CRID were all fully accessible; all but one was located on
the CRID
premises.
5.6 Mammography Rooms
Six
of the 11 CDD had mammography rooms large enough to enable access to women
with
wheelchairs 23 inches wide and 26 inches high. In three of these CDD, the space
was vast enough
to allow
someone with a wheelchair 23 inches to rotate 90 degrees with ease. In the
other five, it
would be
more difficult.
●
In one CDD, the evaluation agent using a wheelchair was not
able to enter the mammography
room because
the door was too narrow.
● In three others, although the agent was able
to enter, movement was limited and exiting was
difficult.
In
the centre where the door was too narrow, the agent was asked to transfer
to a regular chair in
order to
access the mammography room. This centre could only provide services to women
who
are able
to transfer from a wheelchair to a regular chair.
In
the fifth case, where the hallway between the waiting, changing and mammography
rooms is
very narrow,
the agents were informed that if women could not walk, the staff could use
a stool to
transfer
them from the waiting room to the mammography room. As the changing rooms
faced
the mammography
room and the distance between the changing and the examination rooms is
minimal,
this could be a facilitator for women who can walk short distances with a
cane, crutches,
a walker
etc. However, for women who cannot walk and are not able to transfer to a
stool, this
may be
problematic.
●
In two other CDD, the agent using a wheelchair could only go
forward or backward to get out
of the
room (i.e. she couldn’t turn around). The room or doorway was either too small
or it
had furniture
that did not leave enough space for rotation.
●
In three CDD, the mammography rooms were very spacious.
Mammography
rooms in all five CRID were spacious enough to allow someone to rotate in
a
wheelchair.
5.6.1 Mammography Equipment
Three brands of mammography equipment were seen in the CDD and the CRID all
with various
height
possibilities:
●
GE Senographie: descends to between 31 inches and 32 inches
from the floor.
Two
CRID and four CDD have this equipment.
●
Lorad (with various model numbers): descends
to between 23 inches and 28 inches from the
floor.
Six CDD and two CRID have this equipment.
●
Simmons-Mammosmat: descends to 32 inches. One CRID has this equipment.
One
CDD had both the GE Senographie and the Lorad. This centre had the Lorad
in a somewhat
larger
room that served women who use wheelchairs
According
to the manufacturer of Lorad, the
Lorad IV model and higher were created in
consultation with women with disabilities (personal e-mail, 2003). Two technicians
at two centres
also agreed
that Lorad is generally better adapted
for women using wheelchairs.
All
mammography models had transparent plastic protective panels. These are used
to protect
people
and guide dogs from x-rays from the mammogram. This is a facilitator for women
who are
hearing
impaired or Deaf allowing them to lip-read or communicate with the sign language
interpreter standing behind these panels. The protective panels in all CDD except
two were
positioned
so that women could easily see the technician and interpreter during the examination.
The evaluation
agent representing Deaf
women indicated that: “Je préfère avoir deux vitres
[panel de protection] des deux
côtés pour avoir toute explication par l’interprète.”
In
most centres, there was enough space to allow the guide dog to
remain behind the protective
panel.
Two
of the four CRID told us that after the sign language interpreter explained
the procedure, it is
expected
that he or she remain behind a protective panel.
5.7 Other Examination Rooms
Consisting of specific rooms for complementary exams, ultrasounds and biopsies,
these types of
examination rooms were found in the CRID.
5.7.1 Ultrasound Examination Room
For an ultrasound, women lie on a bed which is fixed. There was no means for
adjusting its
height
for women using wheelchairs or for women with other types of mobility disabilities.
Technicians reported that in cases where women cannot get on the table, either
stretchers were
used or
they had other hospital personnel help them up. At one of the CRID, the technician
told us
that in
certain cases, the ultrasound had been performed in the wheelchair for women
who could
not be
lifted up.
●
Ultrasounds in two CRID were performed in rooms that were not large enough.
● At one CRID, the ultrasound room appeared
somewhat smaller then the others.
● The remaining two were adequate in size.
5.7.2 Biopsy Room
We saw a typical biopsy room in three of the five CRID that we visited. At
the other two CRID,
we were
told that an examination was in progress. As a result, the technician simply
described
the size
of the room and the procedure.
The
problems arising from biopsies primarily concern women with mobility disabilities.
The
biopsy
procedure requires that one lies face-down on the table so that their breast
falls into a hole.
Below
the hole lies the apparatus’s needle that pierces the breast to take a sample.
Depending on
the hospital,
this procedure lasted approximately 35 to 45 minutes with the patient having
to stay
still.
When asked how they accommodate women who have back difficulties, spasms,
and other
problems
that would affect staying still, each hospital said that they have ways of
helping women
to relax
including medication or other techniques.
5.8 Written and Audio-Visual and Other Forms of Communication
The PQCDS, the CDD and the CRID give out a variety of brochures on breast
cancer in French
and English
but none of these materials was available in any alternate format. This means
that
women with
all types of visual disabilities and low literacy levels have no access to
the same
information.
The
following recommendations by the evaluation agent representing blind/visually
impaired
women addresses
some of the problems generally observed concerning written information:
Le personnel devrait développer le réflexe d’offrir aux
personnes avec problèmes de
vision les documents
d’information disponibles près des salles d’examen”; “La
documentation offerte aux
femmes est produite par le Ministère de la santé et services
sociaux et se retrouve
dans toutes les cliniques de dépistage. Une demande pourrait être
adressée à ce ministère
pour qu’il rende accessible ses documents imprimés.
L’information concernant la manière de se les procurer pourrait
faire l’objet d’un
communiqué auprès de
la clientèle handicapée visuelle.
Furthermore,
three evaluation agents also found that the PQCDS brochure and most of the
medical
forms are written in small print, making reading difficult for a majority
of women.
Having
information available on video at each CDD could be one way of informing women
with
any type
of visual disability and women who cannot read. Ideally, the videos should
be captioned
with LSQ
interpretation to make them accessible for Deaf women as well.
Although
two CDD had televisions available in the waiting rooms, none had a video on
the
PQDCS or on breast-cancer screening. Three CRID had televisions but only one
had the abovementioned
video.
One of the CRID had a computer CD on breast cancer provided by the Quebec
Cancer
Society which is not captioned.
5.8.1 Consent Form
In five CDD and two CRID, women were asked to complete the medical questionnaire
on paper
prior to
the mammogram. These medical questionnaires were found to be difficult to
complete
especially
by the agents representing women with developmental disabilities and by the
agent
representing Deaf women mostly
because “les mots dans les formulaires étaient difficiles” or the
print was
too small.
●
At five centres, the technicians
or receptionist completed the questionnaire with the women in
the mammography
room and the responses were entered directly into the computer.
● One centre had a room specifically designated
for completing the form and to enter the data
into the
computer. This room was small and the hallway toward it was narrow. Although
difficult,
it was possible for a woman with a wheelchair of a 23-inch width to enter.
The
consent form to participate in the PQDCS was only available in print. Overall,
the font was
too small
and the form was printed in a format not accessible to women who are blind/visually
impaired.
Two centres had photocopies of the forms but agents
found the print to be too small and
inaccessible to blind/visually impaired women.
5.9 Telephones
None of the 11 CDD had a Text Telephone (TTY) (also known as a TDD or Telephone
Device
for the
Deaf)
●
Only one CRID had a TTY located in the public telephone just
outside the CRID allowing
Deaf women to make calls from the pay phone. It is locked with key access. A pictogram
on
the wall
indicated its presence.
●
Seven CDD and all five CRID have public Bell Canada pay phones at the front
or designated
entrance(s). All pay phones had amplifiers for women who use hearing aids. However,
most
are located
too close to the entrance creating noise interference with hearing aids. Only
one
had a Bell
Canada telephone located in the waiting area not far from the front entrance.
●
Only six CDD had telephones designated for calls to taxi companies.
None of these are
equipped
with amplifiers, or T-Coil, making them incompatible with hearing aids.
5.1.0
Greeting and Attitudes
Literature
on health issues and women with disabilities converge on several points. Among
these,
the literature
points to a “lack of access to services and medical equipment that could provide
early cancer
detection” (Jacobs Institute, 1996). This is due to many factors (Welner retrieved
2003)
including social biases, lack of information and the inability to differentiate
between biomedical
component
of disabilities and the environmental barriers (Chytilo,
J. citing Edwards,
2003).
Some
of the experiences we have encountered in the CDD and the CRID are not atypical
of
attitudes
encountered in general society. The main concern found in almost all CDD is
that, in one
way or
another, it is difficult for the centres to accommodate
women with physical disabilities, as
Welner,
1996 states “especially if the women need assistance in leaning forward, toward
the
mammography equipment.”
Overall,
it was very difficult to get an accurate sense of the reception as acknowledged
by two of
the four
evaluation agents. In fact, as noted by the agent representing blind/visually
impaired
women “Cette
section est très difficile à répondre compte tenu de la visite de groupe et
de
l’absence de réel examen.”
In
most centres, the agents conducting the evaluation reported that
they felt staff was cordial,
sensitive
and had been willing to adapt or modify the procedure in order to accommodate
the
agents’
visit.
The
staff in some centres informed evaluation agents
that they knew how to adapt their practices
to meet
the needs of women with various types of disabilities. In particular, the
technician of one
particular
centre stated that she had found ways to provide services to women with “severe
disabilities.” She adapts the screening procedure so that women using wheelchairs
could remain
in their
wheelchairs or she transferred them to a regular chair. This chair also could
be used by
women who
could not stand for long periods of time. Also, the technician could assist
women
with disabilities
who had “uncontrolled movements” (i.e. spasms etc.) or those who had
difficulties remaining still. In this case, the technician could hold them forward
for the duration
of the
mammogram.
Most
CDD and all CRID stated that serving women with blind/visual, hearing disabilities
or who
are Deaf
was not a problem. However, the evaluation agent who represented blind /visually
impaired
women found that some CDD were more sensitive than others to her needs. She says:
“Le personnel de radiologie arrive à me décrire le fonctionnement
de l’appareil de
mammographie en me faisant
toucher l’appareil.”
This
particular centre also had a comforting non-medical décor with colourful walls in the
mammography room which helped women to relax. All women, including women with
disabilities who undergo mammograms, may feel anxious and the décor might help.
Two
other CDD were also helpful in finding solutions to meet the needs of women
with mobility
disabilities.
On
the other hand, in some cases we identified “uninformed” attitudes.
For
example, one centre had a chair similar to chairs used in other centres
to transfer women with
disabilities. The technician told us that she could not use the chair to transfer
women with
disabilities because they may fall and she would not be around to help. She also
told us that a
woman with
Multiple Sclerosis came to the centre and the technician could not perform
the exam:
“…même si les femmes peuvent s’approcher de l’équipement,
ça ne fonctionnerait pas parce
qu’elles ne pourraient
rester droites assez longtemps pour qu’elle puisse faire le film.”
A
similar statement was said about women with developmental disabilities citing
a previous
experience: “…quand
on comprime les seins la femme recule et crie.”
The
agent with a developmental disability suggested that in this case, the woman
could have been
gently
calmed down.
In
some centres, we were told that technicians routinely explain the
process to family members
and not
to women with disabilities themselves:
“D'habitude avec les femmes ayant des handicaps intellectuels,
elle explique le processus à un
membre de la famille
qui l'accompagne.” “Il faut que la personne collabore … parce qu’on ne
peut pas expliquer
tout.”
Another
centre informed us that if women with developmental disabilities go in as
a group at the
same time,
their needs could not be met.
All
CDD staff members mentioned that they appreciate it if someone accompanies
women with
disabilities for their appointments. However, it seems that CDD staff was not
aware that some
women do
not have family members or friends that could go with them. In this instance,
these
women could
request a service provider from the CLSC, if they already qualify for these
services.
This
is not a preferred solution due to the fact that there is
only a specific number of hours of care
allotted
to each person by the CLSC. Therefore, the only other alternative is for women
to pay for
these services
out of their own pocket.
The
issue of assistance does not seem to be a problem in the CRID where support
staff could be
called
upon when required.
A
marked difference exists between the CDD, which are private clinics, and the
CRID, which are
located
in public hospitals. The staff at the CRID seemed less rushed and appeared
to be aware
and willing
to meet the needs of women with disabilities. Part of this may be due to the
fact that
the CRID
can request extra assistance from hospital personnel when necessary. This
may explain
why some
CDD refer women with disabilities automatically to a CRID for their initial
screening.
(Remember:
The CRID are designed for supplementary examinations after an abnormality
is
detected
in the initial screening.)
5.11 Communication
Of note, one CDD had a technician who communicated in sign language. This
CDD is a possible
resource
for women who are Deaf.
When
we evaluated communication, agents representing women with developmental disabilities
and agents
representing Deaf women identified the most barriers. In a few CDD and in
a few
CRID,
the staff spoke too quickly making it difficult for LSQ interpreters to interpret.
The
agent representing women with developmental disabilities stated “la femme
à l’accueil parle
trop vite.” This barrier was also noted by the other evaluation agents
and observers : “La
technicienne parle trop
vite et c'était dur.”
The
agent representing blind/visually impaired women also had some comments about
communication: “Quelques petites
difficultés à me faire comprendre à la réception lorsque j’ai
posé la question à l’effet
de recevoir de l’aide pour compléter le questionnaire.”
A
common experience among persons with disabilities was that often people speak
to the nondisabled
persons
accompanying them. This communication issue was noted by several of the Deaf
agent’s
remarks that the technician’s attitude was “froide,
pressée.”
Or
that expressed by the agent representing blind/visually impaired women:
“(Elle)…a peu d’intérêt à évaluer les besoins spécifiques
de la clientèle handicapée. Elle
considère que si une
femme énonce ses besoins il est plus facile d’y répondre. Par contre, le ton
démontrait un désintérêt.
J’avais l’impression que le personnel manquait de considération pour
toute personne étant
différente.” “La personnel prend un peu à la légère mes inquiétudes.”
All
these comments should be interpreted from the perspective of standpoint theory.
In
standpoint
theory, each of us interpret messages from our own position as well as our
understanding of reality based on past experiences.
A
common misunderstanding is that communication with Deaf women could be done
by simply
writing
down the explanations on a piece of paper or by making gestures. These basic
forms of
communication may work for simple instructions. But for delicate procedures, it
is crucial that
Deaf
women, like most other women, receive information as precise as possible.
The
interpreter is a valuable part of communications. Two of the four CRID told
us that after the
procedure
is explained through the interpreter, it is expected that the sign language
interpreter
remain
behind a protective panel.
Generally
speaking, most the CDD and the CRID were not informed with regard the functioning
of the
services of SIVET (Service de interprétation
visuel et tactile) which provides
interpretation.
6. CONCLUSION
6.1 Summary of Data
To
conclude, we will summarise the accessibility of
the centres based on the seven criteria of
Universal Accessibility. To reiterate, these seven points are:
1.
equitable use;
2.
flexibility in use;
3.
simple and intuitive;
4.
use perceptible information;
5.
tolerance for error;
6.
low physical effort;
7.
size and space for approach and use.
In
order for a centre to be considered universally accessible, all seven criteria
needed to be
identified
by at least three evaluation agents. For the purpose of this report, a centre
must meet at
least three
of these criteria in order to be considered partially accessible. To be partially
accessible,
evaluation agents must have identified fewer barriers within these centres. When
evaluating
documentation and communication, only items two, three and four of Universal
Accessibility
were considered.
The
summary of this evaluation shows that:
●
Although the entrance to ten of the 11 CDD and all five CRID
were universally accessible,
none of
the 11 CDD and five CRID could be considered totally universally accessible.
For
two or
more evaluation agents, four or more criteria of Universal Accessibility were
not
present
in these centres. This could either be within the
room or one of the components (eg.
doors,
elevators, signage, waiting rooms, mammography, washrooms, documentation etc.)
Of
the 11 CDD and five CRID:
●
Six CDD and all five CRID could be considered partially accessible. This is
based primarily
on evaluations
by women with mobility disabilities blind/women or women with visual
impairments.
As
mentioned previously, the CRID had greater level of access primarily due to
the fact that they
have other
hospital staff available to provide human assistance to women with mobility
disabilities.
Documentation
was primarily a barrier for women with developmental disabilities and women
who are
visually impaired /Blind. Documentation in alternate formats were completely
absent
from all
CDD and CRID. Telephones and TTY for deaf women were not available in any
CDD
or CRID
except for in one CRID.
In
most CDD and CRID, someone with a wheelchair 23 inches wide and 26 inches
high could use
the mammography
room and equipment. Only three CDD have rooms and equipment which
allowed
women in wheelchairs larger than 23 inches to undergo a mammogram without
much
effort.
In most CDD and CRID, protective panels were available in accessible locations.
The
attitude of staff could not be evaluated with this model. Rather, the evaluation
is based on
written
statements from evaluation agents. According to their accounts, attitudes
at the centres
were not
different than those found elsewhere in society. That is, some of the staff
were informed
about disability
issues while others based their responses on single incidents resulting in
biased
attitudes
and treatment. A few staff members exhibited overprotective attitudes toward
evaluation
agents
representing women with developmental disabilities.
From
the explanations given as to why three centres did
not participate in the evaluation, one can
infer that
generally, some people still assume that people with disabilities only includes
wheelchair
users thus unintentionally creating inequity to women with other types of
disabilities.
6.2 General Conclusion
Two
points emerge from this evaluation: 1) Parts of the conceptual framework are
validated; 2)
The
findings show a consistency with previous research on issues of screening
and women with
disabilities.
Some
parts of the emancipatory and standpoint models
were validated in this research-- that is
persons
living with a specific situation who are aware of their realities are the
best-situated to
identify
both facilitators and barriers. This becomes obvious when we
compare the results of the
initial
telephone interviews (page 10) and the results of the on-site visits or grounded
evaluations
(i.e. evaluations where people living a specific situation concretely
evaluate a social
phenomenon).
For
example, in the initial telephone interviews, the CDD respondents either said
that they did not
know if
the mammography equipment descended and in one case, they said that it didn’t
descend.
In
effect, our evaluation shows that all of the equipment descends to different
heights. In another
example,
the presence of the Deaf woman and the woman with a hearing impairment allowed
us
to find
out that the protective panels are facilitators when placed properly.
As
stated above, this evaluation is consistent with most of the literature in
the area of health
issues.
Dr. S. Welner, a leading expert on women’s related
health issues and a woman with a
disability
herself, points to four barriers that hinder access to services for women
with disabilities.
We
observed these four barriers: physical, technical, attitudinal and lack of
shared information.
Our
goal was to report our experiences of the environmental barriers and/or facilitators
at the
centres in hope that this aids women with disabilities
to choose centres which best suit their
needs.
We hope that this information can be useful to stakeholders in better informing
their
decision-making process.
One
of the established goals for the year 2002 of the Politique
de santé et de bien-être
of the
ministère de la Santé
et des Services sociaux was to “diminuer
les situations qui entraînaient un
handicap” (MSSS, 1992
p. 128). Continuing to render all services inclusive to women with
disabilities is within the range of equity and the goals set up by this policy.
Now,
we anticipate that we can all work together toward the elimination of these
barriers to
secure
full access for all.
Annex 1: Addendum to Data
SIVET Procedures
Consistent
with emancipatory and action research is the notion
of information sharing, and acting
on information
that arises beyond the specific set goals of the research.
One
element that emerged several times during our evaluation was that both within
the CDD and
the CRID,
there seems to be misinformation about how to access sign-language interpreters.
Moreover,
the director of SIVET spoke with the coordinator of this project asking us
to inform all
possible
stakeholders of its functioning.
The
agency provides sign-language interpreters for Deaf and hearing impaired persons
in
Montréal.
SIVET provides sign language interpretation paid for by RAMQ in certain cases.
A
sign language interpreter is provided:
●
when the Deaf person requires explanation prior, during and
after a medical procedure, or
before
and after an operation;
●
when there are medical forms to be filled out;
●
when a liquid needs to be injected into the Deaf person and
the Deaf person must understand
what has
been administered.
A
sign language interpreter is not provided:
●
for a simple x-ray;
●
during an operation (if a Deaf person is under anesthesia).
How
the service works:
●
Deaf women call SIVET to give them information regarding whole appointments;
●
SIVET verifies with the hospital clinic what is required in terms of procedure
and treatment
and then
assigns an interpreter.
Mammogram
In
the case of a mammogram, there seem to be questions as to whether there is
a need for an
interpreter. It was explained to the director of SIVET that the women need to
fill out medical
forms as
well as consent forms if they wish to be part of the PQDCS.
The
director explained that the services that SIVET can provide are limited if
the hospital and/or
clinic
call at the last minute. They require a minimum of a week notice. In case
of an emergency,
they do
their best. There is a shortage of sign language interpreters to meet the
present level of
need.
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