International journal for equity in health · 2025
Barriers and facilitators to advance care planning for people with intellectual disabilities: a cross-sectional survey study of professional caregiver perspectives.
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Zeilinger Elisabeth Lucia, Simeoni Lena, Wagner Theresa, Vielgrader Tamina-Laetitia, Fuchs Amelie, Fragner Tobias, Grabovac Igor, Masel Eva Katharina, Unseld Matthias
Аннотация
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.
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.