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

Abstract

PURPOSE Women with intellectual disabilities (or mental retardation) are living longer, receiving primary care in the community, and have equal rates of breast cancer compared with women in the general population, but they have lower rates of mammography. Although several public campaigns have successfully raised the mammography rate for racial and ethnic minority women, they have not penetrated the community of women with intellectual disabilities. No research to date has explored potential barriers to mammography for these women by involving the women themselves as participants. METHODSWe undertook a qualitative study to explore the perceptions and understanding of mammography for women with intellectual disabilities and some of the potential reasons they would or would not have the test. Twentyseven intellectually disabled women were recruited through a variety of community groups and interviewed using a semistructured interview guide. Data were analyzed using qualitative techniques from grounded theory.RESULTS Participants in this study described being poorly prepared for mammography: they did not understand its purpose and were not prepared for the logistics of the experience. The latter was more upsetting to participants and contributed to their negative perceptions of mammography. Participants reported feeling unprepared and singled out for being unprepared, despite their desire to have at least 1 mammogram, as do other women their age.CONCLUSIONS Women with intellectual disabilities perceive mammography differently than do women who do not have intellectual disabilities, and their perception is informed by inadequate knowledge, anxiety, and inadequate preparation. These themes should be considered when planning cancer prevention interventions with this population and when counseling individual women in the clinical setting.

In This Issue: Back to Basics: Talking, Listening, and Low-Tech Primary Care

“…2 The authors show that standard communication really needs to be individualized. As many practices have increasing numbers of patients with such disabilities, clinicians need training and better information about how to work with them to address fears and concerns.…”

“…Thus, patients are known as persons in context of their own social worlds, listened to, informed, respected, and involved in their care-and their wishes are honored (but not mindlessly enacted) during their health care journey. [2][3][4][5][6] There have been concerns that patientcentered care, with its focus on individual needs, might be at odds with an evidence-based approach, which tends to focus on populations. Fortunately, that debate has been laid to rest; proponents of evidence-based medicine now accept that a good outcome must be defi ned in terms of what is meaningful and valuable to the individual patient.…”

Factors influencing the mammography utilization among Taiwanese women with intellectual disabilities, a nationwide population-based study

“…Furthermore, women with ID must rely on caregivers' assistance during breast cancer screening (Hanna et al, 2011;Taggart et al, 2011). Women with ID do not understand why they need mammography and how it is performed; thus, they experience more fears and anxieties than women in the general population (Sullivan et al, 2003;Wilkinson, Deis, Bowen, & Bokhour, 2011). In Taiwan, the population with ID is approximately 100,363, or 0.46% of the total population, and 43% are women (Ministry of the Interior, 2012).…”

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

“…Problems with communication or a lack of knowledge or understanding of a procedure may cause women with intellectual disability to not seek or be unable to seek appropriate care (Brown & Gill, 2009;Sullivan, Slack-Smith, & Hussain, 2004;Wilkinson, Deis, Bowen, &. Bokhour, 2011).…”