Barriers and facilitators to advance care planning for people with intellectual disabilities: a cross-sectional survey study of professional caregiver perspectives

Autor(en)

Elisabeth Lucia Zeilinger, Lena Simeoni, Theresa Wagner, Tamina-Laetitia Vielgrader, Amelie Fuchs, Tobias Fragner, Igor Grabovac, Eva Katharina Masel, Matthias Unseld

Abstrakt

Background: Advance care planning (ACP) is a critical process for ensuring person-centred end-of-life care, yet it remains underutilized among people with intellectual disabilities (ID). Understanding caregivers’ perspectives is essential to identify barriers and facilitators to ACP implementation and improve practice. This study aimed to examine how professional caregivers in Austria perceive and experience ACP for people with ID, including its current use, barriers, facilitators, and strategies to improve uptake. Methods: A cross-sectional survey was conducted using a structured online form comprising multiple-choice and open-ended questions. Data were collected from 125 professional caregivers across Austria who were primary caregivers of at least one adult with ID and proficient in German. Quantitative data were analysed descriptively, while qualitative responses to open-ended questions were subjected to content analysis. Results: A total of 33.6% of caregivers reported engaging in ACP discussions, with considerable barriers including cognitive and communicative challenges, emotional discomfort, and structural constraints. Facilitators included person-centred communication, interdisciplinary collaboration, and targeted training. Notably, 83.2% of caregivers expressed interest in ACP training. Conclusions: ACP is rarely practiced in the care of people with ID in Austria. However, caregivers identified clear pathways to improve implementation, particularly through training, use of tailored communication methods, and systemic support within care institutions. Promoting inclusive ACP practices is essential to uphold the autonomy and health equity of people with ID, ensuring their voices are heard in decisions about their future and end-of-life care.

Organisation(en)

Institut für Klinische und Gesundheitspsychologie, Institut für Ethik und Recht in der Medizin

Externe Organisation(en)

Karl Landsteiner Privatuniversität für Gesundheitswissenschaften, Haus der Barmherzigkeit, Medizinische Universität Wien, Vienna Doctoral School in Cognition, Behavior, and Neuroscience

Journal

International Journal for Equity in Health

Band

25

ISSN

1475-9276

DOI

https://doi.org/10.1186/s12939-025-02747-1

Publikationsdatum

12-2026

Peer-reviewed

Ja

ÖFOS 2012

501033 Gesundheitspsychologie

Schlagwörter

ASJC Scopus Sachgebiete

Health policy, Public Health, Environmental and Occupational Health

Link zum Portal

https://ucrisportal.univie.ac.at/de/publications/79c456dd-ecc9-412c-babf-4267d99e9c02