Workforce Readiness for Advance Care Planning in Intellectual Disability Services.

Zeilinger, Elisabeth Lucia; Kreye, Gudrun; Fragner, Tobias; Grabovac, Igor; Sterz, Ellen; Simeoni, Lena; Masel, Eva Katharina; Unseld, Matthias · J Pain Symptom Manage · 2026

cross_sectional · Level IV

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Abstract

Advance Care Planning (ACP) improves communication, goal-concordant care, and end-of-life outcomes for people with serious illness. For people with intellectual disabilities (ID), ACP is essential for promoting autonomy but remains inconsistently implemented. Professional caregivers in disability services often provide long-term support and may be key facilitators of ACP; however, their preparedness for this role remains unclear. To evaluate workforce readiness for ACP in intellectual disability services by examining caregivers' conceptual knowledge, self-perceived competence, communication comfort, and role perceptions. A cross-sectional online survey was conducted among 127 professional caregivers working in Austrian intellectual disability services. The instrument assessed familiarity with ACP-related concepts, declarative knowledge, and Likert-scale measures of perceived competence, discussion comfort, attitudes, and responsibility attribution. Descriptive statistics and exploratory nonparametric analyses were performed. Although 67.7% of participants were familiar with advance directives, only 1.6% reported being able to explain ACP, indicating substantial conceptual gaps. Despite limited declarative knowledge, 68.5% reported feeling comfortable discussing ACP, and 85.8% endorsed its importance for people with ID. Declarative knowledge was not associated with perceived competence or discussion comfort, suggesting a mismatch between confidence and understanding. Most caregivers (77.2%) identified ACP as part of their professional responsibility. Professional caregivers demonstrate strong support for ACP but limited conceptual preparedness to implement it consistently. Insufficient workforce readiness may impede timely, person-centered ACP and personalized care for people with ID. Targeted training, interdisciplinary role clarification, and institutional support are required to enable inclusive, person-centered ACP for people with ID.