A Qualitative Study of Spanish-Speakers' Experience with Dense Breast Notifications in a Massachusetts Safety-Net Hospital

Abstract

Background: Legislation requiring mammography facilities to notify women if they have dense breast tissue found on mammography has been enacted in 34 US states. The impact of dense breast notifications (DBNs) on women with limited English proficiency (LEP) is unknown.

Objective: This study sought to understand Spanish-speaking women's experience receiving DBNs in a Massachusetts safety-net hospital.

Design: Eligible women completed one audio-recorded, semi-structured interview via telephone with a native Spanish-speaking research assistant trained in qualitative methods. Interviews were professionally transcribed verbatim and translated. The translation was verified by a third reviewer to ensure fidelity with audio recordings.

Participants: Nineteen Spanish-speaking women ages 40-74 who received mammography with a normal result and recalled receiving a DBN.

Approach: Using the verified English transcripts, we conducted a content analysis to identify women's perceptions and actions related to receiving the notification. A structured codebook was developed. Transcripts were independently coded and assessed for agreement with a modification of Cohen's kappa. Content codes were grouped to build themes related to women's perceptions and actions after receiving a DBN.

Key results: Nineteen Spanish-speaking women completed interviews. Nine reported not receiving the notification in their native language. Four key themes emerged: (1) The novelty of breast density contributed to notification-induced confusion; (2) women misinterpreted key messages in the notification; (3) varied actions were taken to seek further information; and (4) women held unrealized expectations and preferences for follow-up.

Conclusions: Not having previous knowledge of breast density and receiving notifications in English contributed to confusion about its meaning and inaccurate interpretations of key messages by Spanish speakers. Tools that promote understanding should be leveraged in seeking equity in risk-based breast cancer screening for women with dense breasts.

Keywords: breast cancer screening; health policy; informed decision-making; limited English proficiency; risk perception.