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

TL;DR

This study explores how caregivers in Austria perceive advance care planning for people with intellectual disabilities, finding that training and communication tools can help improve future care discussions.

Contribution

The study provides insights into professional caregivers' perspectives on barriers and facilitators to ACP for people with ID in Austria, emphasizing the need for training and systemic support.

Findings

Only 33.6% of caregivers reported engaging in ACP discussions with people with ID.

Barriers include communication challenges, emotional discomfort, and structural constraints.

Most caregivers (83.2%) expressed interest in ACP training to improve implementation.

Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1186/s12939-025-02747-1.

People with intellectual disabilities often do not get the chance to talk about their wishes for future care and end-of life decisions. Advance care planning (ACP) means talking about what kind of care a person wants later in life, especially if they get very sick. It helps make sure their wishes are known and respected. In this study, we asked 125 professional caregivers in Austria about their experiences with ACP. We wanted to know how often they talk about future care, what makes it easy or hard, and how it can become better. Only one in three caregivers said they had talked about ACP with the person they care for. Many said it was difficult because of communication problems, not enough time, or not knowing how to do it. But most caregivers said they want more training and believe ACP is important. The study shows that people with intellectual disabilities need more support to take part in ACP. Professional caregivers need training, more time, and tools like pictures or simple language to help with these talks. This can help people with intellectual disabilities be more involved in decisions about their care and future.

The online version contains supplementary material available at 10.1186/s12939-025-02747-1.

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