disability and mammography screening: intangible barriers to participation

RESEARCH PAPER

Disability and mammography screening: intangible barriers toparticipation

GWYNNYTH LLEWELLYN1, SUSAN BALANDIN2, ANN POULOS1 &

LOUELLA MCCARTHY3

1Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia, 2Faculty of Health and Social Care,

Molde University College, Molde, Norway, and 3School of Medicine, University of Western Sydney, Sydney, NSW, Australia

Accepted December 2010

AbstractPurpose. The aim of this study was to investigate intangible or non-physical barriers to participation of women withdisability in mammography screening.Method. Women with disability were recruited via specific advocacy and support organisations in New South Wales,Australia. Interviews were conducted which focused on issues relating to participants’ experience with breast screeningservices.Results. A total of 75 women with varying degrees of disability agreed to participate. Three key intangible barriers wereidentified related to the women’s expectations to be informed, to be involved and to be treated with respect. Details of thecontent, type, timing of appropriately presented information as well as who should provide it were emphasised. Barriers toactive involvement to manage their disability and take control over their experience were identified. The women alsoindicated the specific treatment they received from screening staff which negatively impacted on their experience.Conclusions. This study has provided important and clinically significant detail of intangible barriers to participation inscreening mammography experienced by women with physical disability. These study outcomes suggest ways in which thesatisfaction with the mammogram experience can be increased for these women and contribute to increased participation inmammography screening.

Keywords: Disability, health care access, population screening

Introduction

It is generally accepted that women with disabilities

interact more frequently with the health care system

than the general population. It is also clear that the

health care needs of people with disabilities are not

consistently met [1]. In particular, it has been noted

that people with disabilities are under-represented in

the areas of preventive services and regular health

checks [2–7]. One such area is breast screening by

mammography which is currently the most effective

method for reducing morbidity and mortality asso-

ciated with breast cancer [8–10]. Under-representa-

tion in breast cancer screening has been identified as

a contributor to higher than normal mortality rates

from breast cancer among women with disability

[11].

Barriers contributing to under-representation in

breast screening by women with disability have

ranged from mobility problems [12], severity of

disability, urban dwelling and marital status [6],

physical comfort, communication and support [13],

transport and access difficulties and not feeling

valued [14]. In a recent review of barriers to

screening, Poulos et al. [15] emphasised the im-

portance of optimising the experience of women with

disability to increase successful participation in this

important health care area.

The aim of this current project was to optimise the

experiences of women with disability by investigating

Correspondence: Dr Ann Poulos, Faculty of Health Sciences, The University of Sydney, PO Box 170, Lidcombe, 1825 NSW, Australia.

E-mail: [email protected]

Disability and Rehabilitation, 2011; 33(19–20): 1755–1767

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2011 Informa UK, Ltd.

DOI: 10.3109/09638288.2010.546935

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barriers to participation. Our project, funded by the

National Breast Cancer Foundation, was conducted

in three phases. Phase 1 comprised interviews with

women with disabilities about their experiences with

breast screening and from these interviews intangible

barriers such as lack of appropriate information and

the attitudes and beliefs erected by others and

encountered during the screening process are re-

ported here.

Method

Ethics approval for the study was granted by The

University of Sydney Human Ethics Committee).

Recruitment

Women with disability between the ages of 50–69

were recruited for this project. This age range was

selected as this is the targeted age range for screening

in Australia). The women therefore were most likely

to have experience and/or knowledge of the national

screening program. The women were recruited using

three methods designed to ensure representation of

women both known and not known to service

organisations. The first and second methods directly

targeted disability and carer organisations, respec-

tively, while the third targeted women not linked to

these organisations, by way of television, radio and

newspaper publicity.

In the first and second methods, specific advo-

cacy or support organisations were invited to act as

intermediaries between their members and the

researchers. Detailed briefing sessions were con-

ducted and information packages about the project

were distributed. The organisations contacted the

researchers with the woman’s verbal consent. The

third recruitment method involved providing the

project’s contact details to the media outlets used

and the women themselves were invited to initiate

contact. We then arranged to meet with the

potential interviewees at a time and place with

which they felt comfortable. If the interviewee

wished for a support person to be present, this

was arranged. At this meeting, a ‘Plain English’

information sheet outlining the project’s methods

and objectives was provided to the participant. To

ensure that this material was understood and

acceptable, it was fully discussed with each partici-

pant immediately prior to the interview. The

requirement for taping and transcribing each inter-

view was particularly addressed, as were the

project’s arrangements concerning anonymity and

data protection. Participants who agreed to these

requirements then signed a consent form. Each

interview took around 2 hours and was fully

transcribed verbatim and imported into qualitative

analysis software, NVivoTM Version 7 [16].

Sample size

Seventy-five women with physical and intellectual

disability participated in the research. The age range

of participants was between 50 and 69 (see Table I)

and each woman self-identified (or was carer-

identified) as having a disability. We employed

maximum variation sampling, followed by theoreti-

cal sampling to reach theoretical saturation. This

strategy ensured a diverse sample to capture the

breadth of possible characteristics of the women

involved and their experiences.

Interview process

The interview was designed to reflect specific issues

we wished to investigate. These were developed from

research that team members had undertaken and

which was considered to be potentially significant in

terms of understanding women’s relationships with

health care providers e.g. [17–20]. Specific concerns

of the interviews included: the impact of having

complex communication needs or communication

disability [17]; women’s familial and social networks

and how these influenced health care [18]; con-

tributors to the holistic discomfort experienced

during screening such as beliefs about mammogra-

phy screening, women’s experiences on the day and

the mammography procedure [19], the relationship

between information provided and expectations of

screening [20]. In addition, the women’s education,

employment and residential histories, their interac-

tions with and attitudes to health care providers and

finally, each woman’s breast care history were

recorded. This final category included questions

about their knowledge of and reactions to breast

cancer in family or friends, understanding of and

decisions about self, clinical and mammographic

breast examinations, their beliefs about risk and

specific breast health care information.

In particular, we wished to examine the variety of

ways having a disability might influence a woman’s

Table I. Age grouping of participants.

Age range n¼75

Percent

of sample

Percent

of population

50–54 (1950–1955) 34 45.3 31.8

55–59 (1945–1949) 22 29.3 28.6

60–64 (1940–1944) 9 12.0 21.5

65–69 (1935–1939) 10 13.3 18.1

1756 G. Llewellyn et al.

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involvement in the mammography screening process.

So, in addition to inviting participants to describe

and assess the impact of their disabilities, we followed

up with specific questions concerning the woman’s

need for assistance in terms of the kinds of assistance

obtained and an estimate of the time per day such

assistance was required. This information was valu-

able in helping the researchers acquire some under-

standing of each woman’s self-perception, as well as

enabling us to identify patterns of access for this very

broad group ‘women with disabilities’.

Data analysis

An iterative coding analysis of the transcribed inter-

view material was carried out by the authors and

applied to the transcriptions to facilitate structuring

and validation. Thematic analysis was carried out

using the following steps:

Step 1: Initial coding identified barriers experienced

by the women with physical disability

participating in mammography screening.

These barriers were then ranked according

to the number of responses by participants

identifying the barrier.

Step 2: Secondary analysis was carried out by cate-

gorising the barriers into key expectations of

the women with disability when they partici-

pate in screening mammography following

the method suggested by Cresswell [21].

Results and discussion

Sample profile

Disability history. In terms of the women’s self-

reported disability, as indicated, the recruitment

process provided for participation by women with

both physical disabilities and intellectual disabilities.

At the broadest level, 54 participants (72%) self-

reported having a physical disability as their primary

disability and 16 (21%) self-reported (or carer

reported) an intellectual disability, three (4%)

reported an acquired brain injury and two (2.6%)

reported psychiatric disorders. There was some

overlap between these categories. In an attempt to

identify how women themselves viewed their dis-

ability in terms of functioning, each participant was

asked to assess her abilities and provide details about

her care/support requirements. The largest group,

32%, considered themselves to be independent and

required (or received) no support. The second

largest category, 20%, required the highest level of

support, here assessed at 6 hours or more per day.

Almost 34% of the sample reported receiving

between 2 and 5 hours of support per day.

Communication ability. Overall, 48% of women

interviewed for this project used verbal communica-

tion with minimal or no impairment. And while only

a minority used communication devices or support

personnel (17%), this is still a sufficiently high

proportion to suggest that mammography staff be

provided with skills in different communication

modes. In addition, the remaining 35% of women

used only verbal communication but demonstrated

varying degrees of difficulty in being understood by a

stranger.

Support personnel. A support person was invited by

two women with intellectual disability and seven

women with communication difficulties. Their sup-

port role was primarily to prompt the interviewer to

rephrase a question, use simpler English or use

physical gestures to get the idea of the question

across. Some support people acted as translators for

women with limited verbal skills. In some cases,

specifically in residential care facilities, the interview

took place in a group setting.

Breast care history. The participants’ screening rates

are important in the context of the issues they

identified as barriers or facilitators to screening and

as a validity comparison with national screening

rates. Overall, our sample’s largest category was

‘Regularly Screened’ at 49.3% of the sample, slightly

lower than the national average at 56.8% [22]. ‘Only

Once’, ‘Stopped Screening’ and ‘Irregular’ com-

bined represented 36%; while never screened women

constituted a further 14.7%. No national data for

‘never screened’ women is available. As a measure of

the importance of breast cancer screening practices

for the women we interviewed, we asked a series of

questions regarding their participation in self-breast

examinations and clinical breast examinations. Over-

all, this data suggest that the majority (89%) of

women we interviewed believe breast health to be an

important issue.

Data analysis

Interview data were coded to reflect the issues and

concerns that the women themselves raised: the kind

and forms of information women associate with

screening, women’s explanations for participating or

not in screening and the key issues women believe

influence their access to screening. The ‘intangible’

barriers identified by the women in our study,

specifically those relating to their disability, are

reported here. These issues related to expectations

of the screening process that were not always met.

Disability and mammography screening 1757

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The key expectations of these women were to be

appropriately informed about the screening process,

to be actively involved in the mammography

procedure and to be treated with respect. These

key expectations and the barriers that constrain them

are presented in Table II.

To be appropriately informed

Information or lack of was identified as a barrier in

85.3% of responses. Like all women, women with

disability need relevant information at appropriate

times and in appropriate formats. The chief concern

for women in our study was a lack of consistent

information about screening mammography, its

goals and outcomes, the details of the mammogram

procedure and most importantly, the impact of

having a disability on the screening process. When

women talked about their information needs, they

did so in ways which located their expectations about

different forms and kinds of information and who

they believed should be responsible for providing it.

Untangling the many strands that make up the

category of ‘information provision’ formed a major

component of this analysis.

Understanding breast cancer. Before the benefits of

screening mammography can be appreciated, it is

important to have an unambiguous notion of breast

cancer and the role of mammography screening in its

detection. Therefore, equally influential for the take-

up of cancer screening programs such as mammo-

graphy screening is the general understanding of the

natural history of cancer. In our study, it was

intriguing to hear within the women’s perspectives

on cancer risk and prevention, stories which although

some feel are the product of their own observations,

do reiterate previous medical beliefs or beliefs

widespread in previous generations. One case in

point is the belief in cancer’s transmissibility. For one

woman (M21), the evidence from her own family

and friends network was compelling, despite ‘know-

ing’ that it was not considered possible:

. . . another friend of mine who’s 82 and I just cheer her

up she just had a breast off and her husband died of

cancer. And then my vet, Mr K died of cancer and his

wife had a breast off. I don’t know, I think that

cancer . . . I honestly think that it can get into us almost,

I know that cancer is not contagious but I know that it

goes in husband and wife. I know of three couples,

husband and wife, husband-wife, husband-wife. And my

father, my aunt and my uncle, all.

Concerns about a lack of information could also

take the form of confusion resulting in receiving

conflicting information. This is a recognised pro-

blem, particularly in relation to topics such as breast

cancer, where discussion by women occurs both in

family and friendship groups but also receives

extensive media coverage. However, it can be seen

that a lack of ‘definitive’ information, and informa-

tion which consistently reinforces a single message,

can lead to a perception by health consumers that

they know little about the topic in question. As (M4)

pointed out, information about breast cancer has,

. . . pretty much exploded because it’s become a big PR

thing, you know. They have those days when they hang

bras on the line and promote it mainly through people on

television developing breast cancer, but then that doesn’t

translate into people knowing what to do about that.

Equally, troubling can be the result of a mislead-

ingly upbeat message. As one participant (M03)

recalled, it was not until someone close to her

became seriously ill with breast cancer that she

realised how dangerous it can be:

I had no idea in all honesty. Only seeing Sara Henderson

on TV and knowing that the family has breast cancer

I’ve just assumed that, ok you’ve got breast cancer you

remove the breast and you’re fine. Sorry I didn’t know

until my step-mum . . . well its hit more home that it can

go through your system and it can kill you . . . unless it’s

treated the right way it will kill you . . . There’s not

enough information on that there really isn’t.

Another participant, (M7) raised a similar con-

cern, indicating how conflicting messages can lead to

a lack of confidence in all information.

Because not long ago, it was a program on television and

they say, it was about breasts and little tubes or channels,

how you calling, them for milk, they say cancer’s usually

happening there because they’re finding out round those

Table II. Expectations and barriers.

Key expectations Barrier

To be appropriately

informed

Understanding breast cancer

Conflicting information

Benefits of screening mammography

General practitioners as informants

Stories as information

Invitation to screening: ‘outside the box’

Getting there

All about the mammogram

To be appropriately

involved

Expressing special needs

Being listened to

Minimising pain

Having control

To be treated with

respect

Staff knowledge of disability

Staff attitudes


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canals tubes or something, and there in all those things is

arrested maybe . . . And they [also] say it doesn’t matter

if you are mother and breast feeding or you never had

children, it could happen to either side so what’s that

telling you? . . . But in reality I don’t think we really

know why it’s happening.

Women in our study also identified a lack of

consistency in messages promoting the benefits of

mammography screening.

Benefits of mammography screening. Information on

the benefits of breast screening by mammography

is available through a range of advertising media.

However, this information is also subjected to

adverse influences suggesting that mammography is

an unreliable method. For example, while accept-

ing that screening is a worthwhile activity, (M26)

expressed some niggling doubts derived from

‘stories’ about women for whom screening had

failed:

. . . if you watch TV sometimes you are having second

thoughts because those who have mammography they

are told nothing is wrong and then later on in their lives

they have it and it is too late. I don’t think I am going to

have cancer, that is how I look at it.

(M11) had a similar experience to relate with

similar feelings about the test’s unreliability:

Prevention. I do believe in prevention. OK I’ve been a

nurse so . . . And I have a friend, actually I’m so upset,

she did a mammogram one week before she got the

cancer. That was terrible, she couldn’t . . . she said, ‘I

just did mammogram they couldn’t see it.’ How good is

this mammogram, is it no good? If they can’t detect, I

don’t know if it was a week or a few weeks before, or a

month before, she did it and it couldn’t detect and she

had a big lump. So how did that happen? How does it

happen? They said the ultrasound is better than

mammogram. I believe it is worthwhile because some

people did get prevention, but I think the best thing is to

detect yourself when it’s small so you’ve got more

chance . . .

These doubts support the findings of Barr et al.

[13] which identified scepticism about the utility of

mammography to detect lumps in a timely fashion as

a barrier.

Another side effect of possibly misleading medical

terminology relates to the notion of mammography

screening as a ‘preventive’ health procedure. Most

health professionals are conscious of the need to

clearly differentiate between preventive practices,

which claim to reduce one’s chances of contracting

a disease (such as smoking cessation and lung

cancer) and cancer checks such as mammography

screening, which merely identify those people who

already have the disease. Such fine nuances, while

often recognised at one level, can be misunderstood

at another. As (M20) recounts:

. . . because you know like with women because more

women are going the breast cancer the percentage of

women with breast cancer had gone down, was all

because of the breast check.

Women in our study when asked where their

information about screening mammography came

from described the role of general practitioners.

General practitioners as informants. In our study,

general practitioners received mixed acclaim relating

to encouraging breast screening for women with

disabilities. Participants saw their GP as a primary

source of information and guidance on screening

with 46% of the women interviewed indicating their

GPs had prompted their participation e.g. (M63):

From the time I had my accident she had me

going for mammograms. They send me reminders that

I need to have another one done. So I’ve been lucky,

I’ve an extremely good doctor whenever there’s some-

thing due like a tetanus shot or a Hep B shot, I get a

reminder.

The importance of doctors’ promotion of mammo-

graphy screening and encouraging participation has

been identified in a recent systematic review of

mammography utilisation [23]. This review con-

cluded that ‘improving the scope and frequency and

of mammography recommendation by primary care

providers is the single most important direct con-

tribution the medical community can make toward

increasing mammography use’ (p. 1477). Given that

women with disability typically see their doctors

frequently, their encouragement of mammography

screening is paramount to increased participation.

However not all primary care providers embrace

the benefits of mammography screening. Conflicting

opinions between doctors added to the women’s

feelings of uncertainty, for example (R60)’s recollec-

tions highlight how a woman who herself accepts the

value of screening might examine the meaning

behind their practitioner’s opinion:

. . . the doctor I was under in those times for some

reason she did not feel breast screening did any

good . . . She said she had been a doctor for a long time

and she did not think it did the job that they claim it

does. I don’t know if it was a case of the technique was

too new to her, or if she was set in her ways or what, but

she did not think it was good. She thought the pressing

of the breasts like that would cause damage . . . .


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Also, (M11) sums up the problems of doctors’

conflicting opinions as follows:

Education. There’s not enough education about it. And

what I find is very confusing. You’ve got all this research

against, research for, some doctors say yes [you] should

have it, some doctors . . . I think it’s very confusing. And

if you’re not so well educated, it’s very . . . I feel sorry for

these ladies because you know coming from a different

background, ethnic background, some women can’t

read, they don’t know where to go, there’s no informa-

tion. I think it’s very, very hard for them.

For (M11), it was not simply a problem for women

with language difficulties, but rather one resulting

from a lack of a standard position by the medical

profession. For her

It’s very confusing; if you’ve got three GPs you get three

opinions!

Stories as information. Friends and family also

constituted a major source of information for the

women we interviewed and again provided a rich

source of conflicting information. However, a point

of difference between doctors and friends as con-

flicting sources of information was the kind of

material discussed with each. As can be seen above,

the technical aspects of screening, a woman’s risk of

breast cancer and the potential value of screening are

topics which the women tended to confine to their

medical advisors. What the women most frequently

recalled discussing with their friends is the pain.

The memories of one participant (M05) tied

together the lack of knowledge of a first time screener

with the friends’ tales of pain:

I was a bit anxious about it [the first time] based on what

they’d [friends] experienced. [They told you it hurt?] yes

and that it was a big box thing and they clamp things

down on you and all the rest. So, maybe it wasn’t as bad

when it turned out . . . .

On the other hand, another participant (M16)

illustrated how conflicting information is absorbed

and tends to melt into a perception of uncertainty

surrounding breast cancer and mammography

screening.

Some will say, ‘‘Oh God it was the worst experience of

my life’’. My sister for example she says, ‘‘I’m never

going to have another one I tell you’’, and all of that. My

best friend went and had hers and said, ‘‘I didn’t think

there was anything wrong’’. So you are getting two

different stories but the majority of the stories are

always, ‘‘Oh no way. I’m glad I don’t have to have

another for another two years’’.

While conflicting information about breast cancer

and screening mammography is confusing for all

women, for women with disabilities it may be

sufficient justification for non-participation given

that many of them have competing health demands.

As this participant (M01) indicated:

It’s about not being too much trouble. Try to limit what

you have to have done and minimize those things that

are going to be a trouble like a breast scan. Everything

has to be planned and planned ahead. So don’t do things

that aren’t essential for your survival today.

Invitation for screening: ‘outside the box’. An invita-

tion to participate in screening is a crucial compo-

nent to participate; however, for women with

disabilities, there are many opportunities for them

to miss out on vital information. As one participant

suggested to increase participation it is necessary to

ensure women with disabilities:

. . . do not fall between the cracks . . . the ‘Breast

Cancer Council’(sic) must think outside the

box . . . Think outside the square (M61).

She suggested information days and targeting

carers as well as disability organisations.

A woman with an intellectual disability (M14) has

never been for a mammogram despite being within

the well into the age group targeted for participation.

Not being on the electoral roll, she had not received

the standard letter of invitation but was doubtful

whether she would have understood its purpose even

if she had:

It should be in plain English. Because maybe that’s why

a lot of women don’t go because they don’t understand

the jargon. Especially women with intellectual disabil-

ities. A lot of us can’t read. You get given a paper, are

you going to understand? You’re not going to turn

round to the . . . you’re not going to bring attention to

yourself and say ‘look I can’t read’. So why don’t they

make . . . tell all women, even women with disabilities. I

reckon they should cut out the jargon and make it easy,

and explain the whole process and what goes on and

then the women can say whether they, ‘oh I don’t think

I’d like to do that’ or ‘I think I’d better, just in case’. But

I think it should be explained better.

The language and format used in inviting women

with disabilities to participate is clearly critical to

understanding and decision making.

Getting there. While the philosophy and purpose of

screening are important issues for women to under-

stand before entering into such programs, as (M07)

spells out clearly below, the information some


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women felt they lacked could be as simple as

directions for getting to the breast screening unit.

Participant (M07) is a woman from a non-English

speaking background who has a visual impairment.

Her experiences emphasise the need for the informa-

tion to be provided in accessible forms:

How to get there, if I go to [the local] hospital it’s really

hard to find for me. Because you go over there and

everywhere are these- it’s used to get up you know

walking [ramps] and get up on a lift and [you] go up

[close] is sign and arrows and you follow arrow and

again you have to ask someone and person stop and say

‘is there!’ Where? So not many people know or not many

people listen to you in a hospital. So sometimes you’re

really losing yourself in a hospital. Even from their

personnel, who do I mean; people who are behind on a

table, or the kitchen people or cleaners or whatever. I

think, they’re all working there they all should know and

give directions where to go. Often people don’t know

and send you in the wrong door. And if you’re really not

determined and confident you give up. You go, you look

around it’s not there, or by the time you find it’s over,

‘Oh your appointment, you’re too late, make another

appointment’. Who cares! I go home, I’m angry because

I wasted my time today and people don’t care for ‘next

time’.

Women in our study frequently discussed the need

to plan their activities and be well informed in order

to achieve what others may take for granted. Thus,

for a breast screening program to omit providing

such crucial information can play a significant role in

a woman’s decision not to participate further.

Information about the procedure. Our analysis of

women’s concerns about insufficient information

continues with what is for many women their first

experience of mammography: their invitation and

first visit to the screening unit. Many women recalled

in their interviews their first experience of mammo-

graphy screening as a woman with a disability and

their ignorance of what was to happen and what was

expected. Participant (M01) for example, a well-

known disability activist, expressed a great deal of

dissatisfaction with her experience of her first

attempt to be screened for breast cancer. Having

been contacted via the usual channels by the

screening service (who access target aged women

through the electoral roll), she was delighted to

receive her invitation to attend for a routine cancer

screening. She remarked on how pleased she had

been to be included in the program in this ‘regular’

fashion rather than through specialised disability

services. This gave her a positive feeling for the

program at the outset. However, her first visit was by

no means a successful encounter. While she did alert

the staff to the fact that she had limited physical

flexibility and used a motorised wheelchair when

ringing to confirm her appointment, she nevertheless

felt that the staff’s inability to X-ray her was primarily

a result of the service having provided her with

insufficient information about the process:

. . . it just became . . . it was just extraordinarily stress-

ful. Because of these people telling me, ‘Oh well, all the

other people who come in here with wheelchairs can use

it.’. . . For instance, I knew that . . . if I came back on

another day with say my sister with me she would be able

to position me in the best position: she’s a very, very

practical woman . . . if I had her I know that we would be

able to manage with my own chair, with my smaller

chair, I’m sure I could have done it. Because I needed to

get someone behind me to hold my back, just so that I

can be more upright.

One woman (M02) with a long and generally

positive history of breast screening could never-

theless easily imagine the impact of attending for a

first screening without any knowledge of the test and

its expectations of women, especially for those with a

disability:

. . . particularly women who have not come to terms

with their bodies. If they have not come to terms with

their bodies and have no other information that whole

mammogram thing could be a pretty frightening

experience. If you did not know ahead of time that

there was going to be some squashing and mashing

happening. That could be a really traumatic sort of an

experience.

A woman with a psychiatric illness (M05) high-

lighted a number of issues specific to the needs of

consumers such as herself, in particular, she stressed

that the need for information targeted to women with

psychiatric illness was acute:

. . . it’s true that people don’t know, and my experience

is common to a lot of women, so women may be afraid

about what’s involved or they’ve heard it hurts and so

they think, ‘oh well, I won’t bother with that’. Whereas if

you explain the importance of it and that it’s free, I think

the big thing is the cost, people think ‘oh it’s going to

cost’ and they don’t want to do it.

(M12) has an intellectual disability and belongs to

a self-advocacy group, so she likes to be able to speak

up for herself when she can. Her recollections of her

first mammogram illustrate how a lack of knowledge

can result in much unnecessary fear for some

women:

Well, I wasn’t sure [what would happen] until I got to

the clinic. No one told me, no. Well, I didn’t do

nothing, I just went, scared. But the nurse said, ‘Don’t


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worry love, we’ll look after you.’ She said, ‘you’ll be all

right.’ . . . Yes, I would like a lot of information, you

know.

It is to be expected that women who have not

previously been involved in the mammography

screening program will know very little about it.

However, this does constitute an excellent moment

for screening services to present a positive and

informative face in their interactions with women.

It represents a pivot point where a woman may

become a regular screener or instead drop out of the

program altogether. And while there are additional

issues concerning a woman’s experiences inside the

screening room, the information a woman receives at

this point contributes equally to her judgement of the

service and her willingness to take part.

One woman described the concerns experienced

prior to the mammogram:

It’s that how will they be treated. Will they be under-

stood? Will they be able to get in there? How will they be

understood? Are they going to patronise me, treat me

like a baby (M20)?.

Another describes her preparation for a mam-

mogram:

It was very painful for her getting that left arm up. We

practised all week before that because we knew mum

had to lift her arm up, just to stretch the muscle. It was

quite painful and the lady was lovely but we just couldn’t

do it. We just got real cranky when they told us that we

couldn’t get the ultrasound until she had a mammogram

(M28).

These concerns need to be addressed in informa-

tion provided prior to the mammogram. As well

women with disabilities need to be alerted to the

possibility of an unsuccessful attempt to produce

diagnostic images. They will then be forewarned and

any sense of failure felt will be minimised. Informa-

tion should also include how they will be advised if a

mammogram is not possible.

To be appropriately involved

Women in our study wanted to be involved in the

mammography procedure not as passive observers

but as important team members actively working

together with staff to achieve a successful outcome.

The women wanted to assist rather than be a burden

to staff and were very clear about their ability to assist

in ways that potentially could make the difference

between a successful and unsuccessful outcome.

Assisting however depended upon the women

expressing their special needs, being listened to,

and being able to take control during the process.

This would then contribute to minimising the

experience of pain.

Expressing special needs. Key to being involved in the

mammography procedure is a mutual understanding

between the woman with disabilities and the radio-

graphers concerning the physical limitations which

will potentially impact on the positioning required

for the mammogram. The importance of this sharing

is suggested by one participant thus:

. . . they wouldn’t know what your special needs are not

until you tell them (M26).

Not all the women however were keen to share this

information. As one participant indicated, divulging

these details was never an easy decision:

It’s a difficult choice to make the choice whether you

identify that you have a problem or you to try slip under

the cover so with head injury, with stroke, with any of

these sort of things that affected the brain, if you

physically appear as normal people are going to treat you

as normal and they’re going to have expectations about

how you function. And there is this thing where you’ve

got to decide whether you are going to try and start

explaining and trying to explain to a woman in this tin

box on a hot day that was difficult for me to do was just

something I decided not to try to do (M04).

In addition to sharing information about physical

limitations, women in the study also found it

difficult to express their special needs. There were

conflicting expectations: some women expected to

be asked about special needs whereas others were

more forthright and expressed them clearly. For the

women who did want to express their special needs

and suggest ways to make the procedure easier on

themselves and the radiographers, not being lis-

tened to provided a barrier.

Being listened to. Women in our study emphasised

that people with disabilities may require time and

patience to express themselves, for example one

participant described in detail the difficulties experi-

enced by women with communication difficulties:

I think I’m lucky because I can communicate but so

many stroke people just can’t and everybody’s impatient

with them and they don’t get it, you know it’s just so

hard. And it just takes a lot of patience and you just have

to wait and just re-ask a question or just give them time,

because when there’s pressure it just, even with me, I

just can’t think, just everything disappears. I know that

happens to everybody to some degree but it’s much

worse after you’ve had a stroke. The minute you have to


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think about an answer you can’t. And so if you then have

trouble getting out an answer aside from thinking about

it then it’s just hopeless. And they’re treated much worse

than I am people with communication problems, it’s

horrible. I mean I’m one of the worse affected people

that I know, so physically, that’s where I get my

problems, but they get their problems all the time with

their communications.(so physically) they’d be fine yes,

but communicating . . . (M54).

Taking time to listen was emphasised as being

even more important than providing clear explana-

tions:

You know it’s not so much them explaining things

clearly it’s really how they respond then to the person.

It’s not so much the explanation, it’s really if the person

needs to say something and if it takes them twice as long

to say it or three times as long then I think the

radiographer just has to wait and not be impatient,

which they all are impatient because they just want to get

through it, the bodies you know (M05).

This participant described the extra time needed

to take part in a conversation:

It’s not a long procedure that requires you to do so many

things where you want to know what’s going to happen

next and is that needle going to hurt . . . everybody has a

rough idea what’s involved. So maybe the person would

just need to say: ‘now we’re going to start with this side

and I’ll just have to do this and then it will squeeze more’

and whatever, but it just needs to be quite general . . . .

(but responding well) yes to anything the person might

be trying to say. Even just in chatting, you know how

they try, if they’re nice ones they try and chat to you and

to make you feel comfortable, forget about what’s

happening, that kind of conversation is very difficult

for a person to have because when they want to say

something it doesn’t come out quickly, and it doesn’t

come out correctly and that’s the hard part and that’s

when they really need extra time. And if that, you know

to have a friendly conversation you have to be prepared

to be patient (M37).

These communication difficulties support the

findings of Barr et al. [13] who identified discomfort

about communication issues and the lack of sensi-

tivity by facility staff were important barriers to

mammography participation.

Carers accompanying women with disability were

identified as a mixed blessing. One woman felt

terrible after the mammogram because she had not

been able to communicate because the radiographer

only wanted to talk to and listen to the carer (M04).

Another carer, however, took on the role of advocate

for the woman having the mammogram and made

sure her needs were met and let her speak and

insisted she was listened to (M63).

Minimising pain. The pain of the mammography

procedure was identified as a barrier by 89.3% of the

participants. Most women find the breast compres-

sion during a mammogram an uncomfortable and

sometimes painful experience. However, women in

our study also described the additional pain they

experience due to their disability: as one participant

described:

. . . because it’s (the mammography procedure) is very

hard for us girls when we’ve got cerebral palsy to take a

deep breath and hold it while they’re doing it because

our muscles are not the same as other people’s . . . with

us girls we get a lot of pain and a lot of discomfort

because of our muscles (M22).

Another participant suggested that for women who

frequently experience pain in their lives, the thought

of a painful procedure was enough to discourage

participation:

Because I have quite an amount of pain in my life, when

I already have a whole bunch of pain it becomes just that

bit more I don’t need. Thinking here of women who

have arthritic conditions . . . that give them a whole lot

of pain a whole lot of the time, they do not need one

more thing to hurt them (M48).

Both expressing specific needs and being listened

to assisted in minimising the pain experienced.

Women in our study talked about the pain of the

mammogram in 89.3% of their responses and most

frequently in the same way as women without

disability [19,24]. Like most women, minimising

the pain/discomfort of the mammography procedure

reduces anxiety and promotes relaxation which

makes the required positioning easier to tolerate.

Many women experience slight discomfort during

mammography [25] and the majority of research into

mammography pain/discomfort has focussed on the

pain/discomfort of breast compression. A holistic

appraisal of the experience of mammography pain,

however, is provided in a study by Poulos and

Llewellyn [19], which identified the diffuseness of

the pain experience through events prior to the

mammogram as well as the mammogram itself.

Clearly, the pain/discomfort of the mammography

procedure takes on a new dimension for women with

disabilities. This must be acknowledged and every

effort should be made to minimise the experience of

pain/discomfort.

Having control. Women with disabilities frequently

experience a lack of control particularly when

confined to a wheelchair. While the mammography

staff clearly needed to take control of the procedure

apportioning as much control as is appropriate and


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feasible to the women potentially leads to greater

satisfaction with screening. For example, one parti-

cipant resented the way she was instructed to

manipulate her wheelchair and her body to accom-

modate a mammogram:

. . . these people kept trying to tell me how to do it: it’s

my chair, it’s my body. I see where I have to go (M01).

One participant felt awful for a couple of hours

because she had no control over her chair (M47)

while another was keen to take control and position

herself which was more appropriate and more

humane from her perspective than being pushed

and pulled into the correct position. She felt that the

radiographers should ask her to help them. Radio-

graphers do need to provide firm guidance when

positioning that can be viewed as ‘pushing and

pulling’ however when carrying out this ‘firm

guidance’ for women with disabilities the potential

for excessive pain and discomfort is considerable and

needs to be anticipated and minimised as much as

possible.

The following participant clearly describes a no-

win, no control situation arising from being left out

of the important discussion about her ability to

complete a mammogram:

If I gave up that easily, god only knows where I’d be. If

Richard hadn’t been getting anxious about what was

happening; and the fact that they didn’t know what we’re

talking about; and them trying to talk to me and ignoring

what Richard was saying only made me, once again, as

the ham in the middle of the sandwich and it didn’t

matter what happened I wasn’t going to affect either of

these people. They were thinking that he’s getting too

aggressive and anxious and he’s thinking they’re treating

me like shit and why don’t they listen to me. And here

am I thinking I’m in a no-win position here. If I back

them we’re going to have a ding-dong argument about

it, but if I support him they’re going to say it is too hard.

Which is exactly what they did (exasperated tone). I just

decided, I can’t fight this. I’m not getting anywhere with

these two lots of people . . . both of them trying to do the

right thing but none of them . . . I mean I would have

been better off if they’d all bloody left the room and let

me position myself! Or if they had tried with the right

breast first (M10).

The participant’s husband with the participant’s

welfare at heart had contributed unwittingly to this

no-win situation.

Taking control by one participant however took on

a different meaning:

I’ve got a weak right hand. It’s numb and I can’t grab.

I’ll challenge them. I intend to. That’s what I do best

(M32).

Women with disabilities to varying degrees fre-

quently lose control over aspects of their everyday

life. It is therefore important to rethink the mammo-

graphy process such that women can be given control

over appropriate components, which will not only

increase the likelihood of a successful outcome but

also enhance the women’s satisfaction with what is

acknowledged to frequently be an uncomfortable or

painful procedure.

To be treated with respect

In our study, many women praised the facility staff

for their helpfulness and support, unfortunately this

praise was not universal. One participant describes

the experience thus:

. . . it was the most hideous experience I’d had up till

there, apart from giving birth. It was absolutely

cruel . . . .So it does have to be, I think the person doing

it as well . . . (R57).

Staff knowledge of disability. Staff sensitivity de-

pended upon knowledge of disability, seen as a

necessity for screening staff by one participant:

And believe you me they don’t know anything about

cerebral palsy at all in these places. That’s why I’m glad

to be able to help you with this research because they

don’t know anything about cerebral palsy.

Another participant (M19) indicated how lack of

knowledge can have disastrous outcomes:

I mean people of course don’t know what it’s like not to

be able to feel anything down one side. So you can’t

explain that to them but the result is that you can’t

balance and so any movement any touch . . . any little

push can push me over, and of course they manhandle

and push and pull . . .

Staff attitudes. Women in our study talked about

the fight against entrenched medical staff attitudes:

Oh well I just put it down to the normal medical

response. You know, the disability issue, ‘she’s disabled

so we’ll just let that one slide through. We should do it,

we should have it done. It’s a necessary part, it’s like

saying yes we have a disability but yes we are subject to

so called ‘normal’ things that happen to the normal

population. The whole way. It’s like every day, some-

where you can come up against it and you think how

much longer do I have to go on battling it and fight the

fight (M23)?

Women interviewed described the attitudes of

screening staff in both positive and negative terms.


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Many participants acknowledged the help and

assistance provided by the radiographers. Their

influence on the process was clearly demonstrated

by one participant who indicated that she could

tolerate the discomfort of the procedure if:

someone is being generous and kind at the other end.

Some, however, were very critical and very

emotional regarding their treatment by radiographers

whom they described in terms such as: ‘cruel’,

‘callous’, meaninglessly ‘sorry’ (many times), ‘un-

supportive’, ‘process rather than people centred’,

‘rushed’, ‘had rough voices’, ‘inhuman’ and in need

of appropriate communication skills. These words

clearly indicate the strong emotions evoked by their

treatment during the mammography procedure.

Inhuman treatment was described by one participant

(M22):

. . . well just that to treat us properly . . . like the way

they would treat – I hate to use the word – a normal

person . . . they think we’re a ‘freak’ . . . and we don’t

understand . . . everybody try to rush off with the job so

nothing personal nothing emotional nothing . . . but we

feel like a number, because they just push, push,

push . . . .it could be a little bit more human . . . Because

we’re dealing with people . . . .

And another:

. . . even though we are in wheelchairs we are human

beings and we do need things looked at (M31).

Apprehension about treatment by staff was the

focus of this participant prior to having a mammo-

gram:

. . . are they going to patronise me, treat me like a baby

(M23)?

Another participant indicated she was ‘too scared

to talk’ about her needs due to the look on the faces

of the radiographers while too many sorrys were

mentioned by one dissatisfied participant (R58):

And you can’t get your head out of the way, so it’s a real

‘sorry’ occasion. Oh sorry, sorry, sorry. Everyone’s

sorry.

Women’s satisfaction with mammography screen-

ing has been related to returning for screening in a

number of studies [26–29]. In a recent study of

unmarried women, it was found that women with

disabilities were less likely to return for screening

than women without disabilities due to experiences

at the screening facilities. Interestingly, severity of

disabilities was not related to return rate suggesting

that treatment by staff at the facility was the key

factor [26]. Lack of knowledge about disability and

attitudes towards disability have been identified in

our study as strong, immutable barriers to being

treated with sensitivity and respect.

Summary of outcomes

The outcomes of our study have identified intangible

barriers which are specific to women with disability

participating in screening mammography. In terms

of the study’s particular findings, many of the women

we interviewed, while facing and discussing a

number of hurdles they have had to overcome to

participate in screening, were nevertheless com-

mitted screeners, believing its ‘life-saving’ value

worth accessing despite the barriers encountered.

Tangible environmental and physical barriers exist in

a variety of forms however of equal or potentially

greater significance are the intangible barriers cre-

ated by the role of specific groups of people,

including medical professionals and breast screening

staff for women’s understanding of and participation

in the screening process.

Information and the form in which it is provided to

underpin each of these issues and can be seen to

influence women’s choices in ways that may not be

obvious. Our study found that conflicting informa-

tion (breast cancer/mammography screening) was a

major barrier in women with disabilities deciding to

participate while the inaccessibility of appropriate

information (invitation/facility and procedural de-

tails) was likely to deter participation. Equally, the

deterrent effect of assumed pain is clearly a

significant disincentive to regular attending. These

points all indicate therefore that information, from its

provision in alternative formats through to women’s

ability to access reliable forms of advice on the

process and its outcomes, need to be a priority for

future developments of screening programs.

In mammography screening, women and radio-

graphers have the same goal – to produce optimally

diagnostic images for interpretation with a minimum

of pain/discomfort. Our study found that this

mutuality was frequently in conflict. Feelings of

isolation, being ignored and not being encouraged to

assist were common. Ways in which women with

disabilities can facilitate the mammography process

need to be clearly enunciated to minimise percep-

tions of ‘being a burden’. Finally, women in our

study talked about the insensitivity of staff, particu-

larly radiographers and their lack of knowledge of

disability and its implications on their functional

limitations. This led to inappropriate and sometimes

dangerous treatment. Sadly, women in our study felt

they received inhumane treatment from staff, which


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emanated from firmly entrenched medical profes-

sional attitudes towards disability. These attitudes,

for which the data in our study provides ample

evidence, must be confronted and appropriately

dealt with if mammography providers are to offer

disability friendly services.

Limitations

The women in our study volunteered for the project

and so were highly motivated to talk about screen-

ing mammography and their perceptions of barriers

to participation for women with disability, so as a

result the intangible barriers identified here are

potentially limited by their particular experiences. A

further study which focuses on women who have

never attended screening or only attended once

might well produce barriers not covered in our

study.

The use of support personnel by women in our

study raised important issues concerning reliability of

responses. A support person as translator created a

barrier for the interviewer, which could have been

avoided by asking the woman to repeat her response

and have it fed back to her to ensure the point had

been understood. Similarly, the support person of a

woman with intellectual disability who had limited

verbal skills answered all the questions. The inter-

viewer felt that left to her own devices the woman

would have been able to provide more of her own

story.

Interviews conducted in a group setting in two

residential care facilities also provided limitations to

the study when women other than the one being

interviewed answered the questions. However, the

comfort and support provided by the group setting to

the interviewee overcame the problem of extraneous

responses and difficult transcriptions.

Recommendations

From the outcomes of this project the following

recommendations can be made:

(1) Review of screening recruitment practices to

ensure inclusion of women with disability.

(2) Review of information on breast cancer and

the benefits of mammography screening

provided by screening facilities to ensure a

definitive message is provided in appropriate

formats.

(3) Development of relevant information in

appropriate formats about the process of

mammography screening for women with

disability and their carers. How women can

become involved in the screening process

should be emphasised. Importantly, women

need to know what advice they will be given

should the mammogram be unsuccessful due

to their disability.

(4) Development of appropriate information

about the process of mammography screen-

ing for women with disability for general

practitioners.

(5) Specific training for breast screening staff in

disability.

(6) Specific training for radiographers in

carrying out mammography for women with

disability particularly focusing on minimising

pain not only during breast compression

but during the mammography positioning

process.

Conclusion

For the 75 women with disabilities who arranged

their time to participate in the interviews is testament

to their commitment to and determination in having

their voices heard on this topic which is critically

important for their ongoing physical health.

Our study has provided detail of the expectations

women with disability have when participating in

breast screening. While these expectations are similar

to those of all women, physical and/or intellectual

disability exacerbates the physical and psychological

discomfort/pain of the process and therefore requires

both specific knowledge and enhanced sensitivity in

attitudes and practice.

Acknowledgements

The authors would like to thank the women with

disability who participated in this study. This study

was supported by a grant from the National Breast

Cancer Foundation.

Declaration of interest: The authors report no

conflicts of interest. The authors alone are respon-

sible for the content and writing of the paper.

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