Exploring Inclusion in Austria’s Breast Cancer Screening:A Dual-Perspective Study of Women with Intellectual Disabilities and Their Caregivers

TL;DR

This study shows that women with intellectual disabilities in Austria face significant barriers to breast cancer screening, leading to health inequities and late diagnoses.

Contribution

The study provides new insights into systemic barriers and proposes actionable strategies to make breast cancer screening more inclusive for women with intellectual disabilities.

Findings

Barriers include social taboos, psychological distress, and unclear responsibility among stakeholders.

Facilitators involve person-centered communication, accessible information, and supportive healthcare environments.

Low screening participation is due to systemic issues, not lack of awareness or willingness.

Abstract

Public health relevance—How does this work relate to a public health issue?
Demonstrates systematic exclusion within an organized national breast cancer screening program, resulting in inequitable access for an underserved population—women with intellectual disabilities.Connects to broader public health priorities, including health equity, disability inclusion, and preventing avoidable late-stage diagnoses through early detection.

Demonstrates systematic exclusion within an organized national breast cancer screening program, resulting in inequitable access for an underserved population—women with intellectual disabilities.

Connects to broader public health priorities, including health equity, disability inclusion, and preventing avoidable late-stage diagnoses through early detection.

Public health significance—Why is this work of significance to public health?
Identifies the complex interplay of structural, emotional, social, organizational, and attitudinal barriers, including diffusion of responsibility within the screening system, societal taboos, psychological factors, and the role of self-determination, that systematically limit screening participation.Generates actionable evidence to enhance program quality by incorporating accessibility and inclusion as core features of the screening rather than supplementary accommodations.

Identifies the complex interplay of structural, emotional, social, organizational, and attitudinal barriers, including diffusion of responsibility within the screening system, societal taboos, psychological factors, and the role of self-determination, that systematically limit screening participation.

Generates actionable evidence to enhance program quality by incorporating accessibility and inclusion as core features of the screening rather than supplementary accommodations.

Public health implications—What are the key implications or messages for practitioners, policy makers, and/or researchers in public health?
Underscores the need for person-centered healthcare, accessible communication and information, supportive environments, and screening pathways that accommodate diverse and individual needs within standard services.Calls for inclusion to be standardized through clear guidelines, robust data collection, mandatory ID-specific training, and clear accountability across the entire screening continuum.

Underscores the need for person-centered healthcare, accessible communication and information, supportive environments, and screening pathways that accommodate diverse and individual needs within standard services.

Calls for inclusion to be standardized through clear guidelines, robust data collection, mandatory ID-specific training, and clear accountability across the entire screening continuum.

Women with intellectual disabilities (IDs) face persistent health inequities, particularly in preventive services such as breast cancer screening, where participation rates remain disproportionately low. These disparities contribute to higher mortality and poorer survivorship outcomes, often linked to later-stage diagnoses. To better understand these challenges and inform the development of inclusive screening programs, this qualitative study conducted in Austria explored barriers, facilitators, and needs related to breast cancer screening from the dual perspectives of 17 women with mild-to-moderate IDs aged 45 and older and 10 caregivers. Semi-structured focus groups and interviews were analyzed thematically within a constructivist framework, integrating perspectives from both groups. Barriers included social taboos around sexuality, psychological distress, exclusion through standardized procedures, and unclear responsibility among stakeholders. Facilitators involved person-centered communication, accessible information, emotional and practical support, and familiar healthcare environments. Women with IDs expressed a strong desire for education, autonomy, and inclusion, while caregivers played a pivotal role in enabling access. These findings demonstrate that low screening participation among women with IDs is driven by systemic and organizational barriers rather than lack of health awareness or willingness to participate. Without structurally inclusive design, organized screening programs risk perpetuating preventable inequities in early detection. Embedding accessibility, clear accountability, and person-centered communication as standard features of breast cancer screening is therefore a public health priority to reduce avoidable late-stage diagnoses and narrow survival disparities for women with IDs.

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