Greenwood Nechama W, Dreyfus Deborah, Wilkinson Joanne
Intellect Dev Disabil. 2014 Dec;52(6):444-55. doi: 10.1352/1934-9556-52.6.444.
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.
智障女性患乳腺癌的几率与普通人群相似，但乳腺癌死亡率更高，定期进行乳腺钼靶筛查的比例更低。在与家人同住的女性中，筛查率最低。尽管智障女性通常会与亲属共同做出决定，但我们缺乏关于家庭成员对乳腺钼靶筛查看法的研究。我们对智障女性的家庭成员进行了一项定性研究，采用了一份访谈指南，重点关注医疗保健决策与经历，以及与她们所爱的人相关的乳腺癌筛查障碍、促进因素和信念。16名家庭成员接受了半结构化访谈。重要主题包括乳腺钼靶筛查是其他社会和文化问题的参考点，比如她们所爱的人的性取向或成年女性意味着什么；担心如果诊断出癌症就得做出艰难决定，这成为筛查的障碍；关注生活质量；以及希望为她们所爱的人提供高质量医疗保健，尽管高质量医疗保健并不总是等同于定期癌症筛查。智障成年人是其家庭中有价值的成员，他们的亲属关心他们的幸福。然而，家庭担心与癌症诊断相关的潜在复杂决定，可能会因错误信息和对生活质量的关注而选择放弃筛查。解决乳腺钼靶筛查差异的有效干预措施应同时关注智障成年人及其家庭，并纳入家庭背景。
