コミュニケーションが困難な発達障害のある人における患者参加の困難性

抄録

Individuals with developmental disabilities who experience communication difficulties often face challenges in conveying their needs to healthcare providers during time-constrained medical interviews, which can impede access to appropriate medical care. Although patient participation in healthcare has become increasingly important, communication barriers may limit such involvement. This study employed semi-structured interviews with nine individuals experiencing communication difficulties and their regular support providers. Narratives were analyzed using an approach informed by thematic analysis and organized around three perspectives: "medical interviews," "expectations for medical care," and "patient participation in healthcare." The findings highlighted a multilayered structure of difficulties in medical interviews, including challenges in recalling, verbalizing, and self-regulating expression under time constraints; multiple meanings of medical care beyond symptom treatment; and the importance of support providers as "translators" mediating between patients and clinicians. Drawing on these experiences, the study discusses design strategies to foster collaboration between healthcare and welfare services. Proposed strategies include mechanisms for externalizing and summarizing concerns prior to appointments and interfaces that facilitate supplementary or proxy explanations by support personnel, redesigning patient participation as a relational and structural process rather than relying on individuals' linguistic competence.