More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

Abstract

Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

A longitudinal assessment of adherence to breast and cervical cancer screening recommendations among women with and without intellectual disability

“…Thus, for women with mild and moderate ID who do not have a legal guardian, they could refuse screening, and for women with severe of profound ID, who have a legal guardian the issue of consenting for the screening is left to the guardian. Challenges, such as needing more assistance with aspects of the examination and feeling embarrassed about the experience, might contribute to lower screening rates (Greenwood et al, 2014; Wilkinson et al, 2011a, 2011b). Additionally, difficulty navigating the health care system also might play a role; in one study, women with ID who had the assistance of a nurse to coordinate their health care had higher mammography screening rates (Wilkinson et al, 2011a, 2011b).…”

“…One possibility is that doctors face challenges with time management and communication in their care of patients with ID and therefore do not always recommend screening to this group of women (Weedon et al, 2015). The other possibility is that women with ID may be unaware of the need for screening or they or their caregivers anticipate the Pap test and mammogram will cause distress (Greenwood et al, 2014). …”

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

“…59 Physical examinations can also be a source of embarrassment and/or discomfort for individuals with intellectual disabilities. 38,[60][61][62][63] Some people with intellectual disabilities and/or autism find the clinical environment daunting, 63,64 owing to unpleasant or alarming noises, odours, and bright lights. 31,65 The waiting room may induce anxiety, especially if the individual is unsure of why they are there.…”

Exploring the impact of mental capacity on breast screening for women with intellectual disabilities

“…Family carers and support staff members reported discrimination from medical staff members towards women with intellectual disabilities around breast screening, especially in cases of severe intellectual disabilities (Willis, Kilbride, Horsburgh, & Kennedy, ). Nonetheless, there are also reports of family members who requested their relative not to engage in breast screening due to the complex decisions which could result from a possible cancer diagnosis (Greenwood, Dreyfus, & Wilkinson, ).…”

“…The lack of accessible information was reported to be a barrier to screening (Taggart et al., ; Truesdale‐Kennedy et al., ) along with poor support or a lack of importance afforded to screening by members of staff (Taggart et al., ). Reasonable adjustments, such as “easy read” information (Taggart et al., ), longer appointment times and having support from a trusted staff/family member (Greenwood et al., ), were shown to assist in facilitating screening for women with intellectual disabilities.…”