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Enhancing Palliative Care for Individuals With Intellectual and Developmental Disabilities: A Scoping Review of
Juan E Correa-Morales1, María Alejandra Umbacia2, Nidia Mantilla-Manoslava3
1Marie Curie Palliative Care Research Department (J.E.C.M., K.D.H.C.), University College London, London, UK.
Background:
Individuals with intellectual and developmental disabilities (IDD) face significant health disparities, particularly in accessing appropriate palliative care. Communication challenges remain a major barrier to understanding and addressing their complex needs. Despite palliative care's emphasis on person-centered approaches, research on how to communicate with people with IDD to support effective and equitable care delivery and decision-making is limited.
Aim:
This scoping review aimed to identify and synthesize communication strategies used across diverse disciplines that can support the assessment and management of health needs in individuals with IDD within the context of palliative care.
Methodology:
Following the PRISMA-ScR framework and Arksey and O'Malley's five-stage methodology, we conducted a comprehensive search across six databases. Eligible studies focused on communication strategies targeting individuals with IDD in relation to healthcare needs. Data were extracted and synthesized using a systematic qualitative approach to identify patterns and thematic categories across studies.
Results:
Thirty-four studies met the inclusion criteria. Eight key themes were identified through systematic qualitative synthesis: structured communication frameworks, behavioral observation tools, visual and symbol-based aids, caregiver training, technology-based tools, systems-level enhancements, interview-based tools, and adaptive strategies. These strategies were implemented in a variety of settings, including hospitals, homes, and community programs, and served diverse participants with varying communication abilities. Tools addressed pain assessment, emotional expression, decision-making, and support planning. Notably, several studies emphasized co-design and user engagement to improve tool relevance and accessibility.
Conclusion:
Inclusive, multidimensional, and adaptive communication strategies are essential for delivering effective and equitable palliative care to people with IDD.
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