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55 Shared care planning for ALS in Argentina: barriers, opportunities, and competencies

bmjspcare · 2025-09-09 · canonical JSON source

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Background We seek to identify barriers to teaching and implementing Shared Care Planning (SCP) for Amyotrophic Lateral Sclerosis (ALS) patients in Argentina.Objective To identify barriers to the implementation of SCP for ALS patients.To define essential content for a multidisciplinary SCP training course for professionals caring for ALS patients.Methods Two nominal groups of ALS care experts were conducted using qualitative methodology aligned with COREQ guidelines. Discussions and prioritization focused on two questions:What are the limitations or obstacles to initiating SCP processes with ALS patients?What topics should be included in an SCP training course for ALS professionals?Analysis was based on the thematic axes outlined in the International Consensus of the European Association for Palliative Care (Rietjens, 2017).Results Seventeen professionals (occupational therapy, medicine, psychology, kinesiology, nursing) participated. The first group (10 in-person participants) met in Buenos Aires, while the second (7 virtual participants) included experts from Córdoba and Santa Fé. Each session lasted 90 minutes.The research team coordinated, facilitated, observed, and prioritized responses. Identified barriers included healthcare system constraints, limited time, personal barriers (e.g., fear of discussing death), frustration over incurability, lack of SCP training, communication difficulties, and undefined responsibilities in initiating SCP.Suggested training content: SCP definition, communication tools for difficult conversations, ethical aspects (e.g., autonomy, dignity), needs assessment and ALS trajectories, relevant legislation, rights-based perspectives, teamwork, and interdisciplinary collaboration.Conclusions Professional consensus enabled the design of a specialized SCP training program for ALS patients in Argentina.Unique Contribution To raise awareness among healthcare professionals about what PCA is, its benefits, and how to implement it in the specific context of ALS.Implications Reflecting on PCA practice allows for identifying areas for improvement and developing more effective strategies for its implementation.