What to learn and teach to implement Shared Care Planning for people with Amyotrophic Lateral Sclerosis? Nominal Group Technique

Abstract

Background: Advance Care Planning (ACP) is crucial in neurodegenerative conditions such as Amyotrophic Lateral Sclerosis (ALS), yet its implementation in Latin America remains limited, partly due to the lack of specific professional training. The objective of this work is to identify, from the perspective of experienced professionals, the main barriers, tensions, and core contents for designing a training program in ACP for teams caring for people with ALS.

Methods: A qualitative study using a participatory approach and Nominal Group Technique was conducted in Argentina in 2023. Seventeen professionals from clinical and psychosocial fields participated in the study. Thematic analysis was applied, with triangulation and consensus validation.

Results: Implementation barriers and six thematic areas were identified. Key topics included ethical frameworks, communication tools, existential distress, and strategies for involving families. A cross-cutting axis was the influence of local culture, team emotional responses, and the prevailing biomedical model.

Conclusion: This study offers a conceptual and practical foundation for developing ACP training programs in the context of progressive neurological diseases. It represents a first step toward addressing a training gap in the region.