Despite people with Down Syndrome (PwDS) being more independent and technologically proficient than in the past, their use of digital applications and devices is often monitored by others with little input from them. This exploratory qualitative study uncovers potential opportunities for supported decision-making (SDM) that centres on PwDS as they balance the need for safety during their user experiences while respecting their autonomy. Twenty-seven semi-structured interview sessions with eleven PwDS were analysed using reflexive thematic analysis. We report their current independent and unsupervised technology use across various activities and contexts, as well as barriers to their autonomy. This preliminary work then proposes how human-centred, SDM collaborations could respect the autonomy of individuals with DS by working with them to define what digital safety is for them.

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Striking a Balance Between Autonomy and Safety: Supported Decision-Making Opportunities Involving Technologies Used by People with Down Syndrome

  • Rachel E. Wood,
  • Jinjuan Heidi Feng,
  • Jonathan Lazar

摘要

Despite people with Down Syndrome (PwDS) being more independent and technologically proficient than in the past, their use of digital applications and devices is often monitored by others with little input from them. This exploratory qualitative study uncovers potential opportunities for supported decision-making (SDM) that centres on PwDS as they balance the need for safety during their user experiences while respecting their autonomy. Twenty-seven semi-structured interview sessions with eleven PwDS were analysed using reflexive thematic analysis. We report their current independent and unsupervised technology use across various activities and contexts, as well as barriers to their autonomy. This preliminary work then proposes how human-centred, SDM collaborations could respect the autonomy of individuals with DS by working with them to define what digital safety is for them.