‘It’s Easier Said Than Done’: Perspectives on Mammography From Women With Intellectual Disabilities

Joanne E. Wilkinson; Cristina E. Deis; Deborah J. Bowen; Barbara G. Bokhour

doi:10.1370/afm.1231

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Table 1

Demographic Characteristics of Participants (N = 27) by Residential Setting

Characteristic	Group Home (n=13) No.	Independent (n=14) No.	Total No.
Age, y
<40^a	0	1	1
40–50	2	3	5
51–60	11	5	16
61–70	0	5	5
Race
White	11	13	24
Black	2	1	3
Consent status
Independent	6	14	20
With guardian	7	0	7

↵a One participant was younger than 40 years but had a family history of breast cancer.

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Table 2

Suggestions From Participants About Preparation and Communication

Theme	Participant Recommendation
Give details in advance about logistics of test	It’s important that I know ahead of time instead of a week later. And explain that it’s going to hurt but it’s to protect you….Because people really don’t know.
Listen attentively to the patient’s concerns and address them	And don’t interrupt and wait until they’re finished talking, what they’re saying… ‘Cause some doctors, they can just sit there and listen, then nod some and when you walk out of the room, it’s like they didn’t hear nothing. Be, um, more persistent, be um persistent with your patients and everything to make sure you know they have everything they need.
Tailor information to patient’s level of understanding; show, don’t tell	[Interviewer]: Like a dummy to show it on? M: Yes, exactly I mean you have to show it on a dummy where they have the um…. Interviewer: Lump? M: Lump! The lump… maybe I’d understand it more, I’d get it more, but if she says push here or here, do you think I’m gonna understand? I’m not gonna understand it. I think a great way for doctors to understand like how to communicate with a person with a disability is to strike up a casual conversation first. And for them to judge by the conversation how they should talk to them in medical terms.

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Supplemental Appendix

Supplemental Appendix 1. Interview Guide

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Supplemental data: Appendix - PDF file, 1 page, 102 KB
The Article in Brief

'It�s Easier Said Than Done': Perspectives on Mammography for Women With Intellectual Disabilities

Joanne E. Wilkinson , and colleagues

Background Women with intellectual disabilities have equal rates of breast cancer compared with women in the general population but lower rates of mammography. This study explores the perceptions and understanding of mammography in women with intellectual disabilities.

What This Study Found Women with intellectual disabilities perceive mammography differently from women in the general population, and their perception is shaped by inadequate knowledge, anxiety, and inadequate preparation. In-depth interviews with 27 intellectually disabled women revealed that they feel poorly prepared for the procedure, not understanding its purpose or what to expect during the test. The latter was particularly upsetting to those interviewed and contributed to their negative perceptions of mammography. Participants reported feeling singled out for being unprepared despite their desire to have at least one mammogram like other women their age.

Implications

The authors assert that women with intellectual disabilities need more time and explanation to understand and process elements of the experience. The women want to be perceived as competent, not disabled, which compounds the anxiety of unfamiliar situations. Increased familiarity with the test may facilitate the women's ability to complete mammography successfully and to return for subsequent screenings.
The authors offer several recommendations for preparing intellectually disabled women for mammography, including allowing for extra time during the appointment so medical providers can describe the procedure, including details about where it occurs, how long it takes, and what the experience will be like, as well as a brief explanation of why it is necessary.