Fluid Independence: Powered Wheelchair Users’ Perspectives on Autonomy, Care, and Assistive Technology

Paper Title

Fluid Independence: Powered Wheelchair Users’ Perspectives on Autonomy, Care, and Assistive Technology

Publication Info

• Topic area: Assistive technology and user-centered design for powered-wheelchair users
• Keywords: powered-wheelchair users, assistive technology, autonomy, caregiving, independence, emotional well-being, accessibility, participatory design, systemic barriers, user-led frameworks

Background and Problem

• Problem / challenge: Despite advancements in assistive technologies, real-world independence for powered-wheelchair users is constrained by structural barriers, caregiving dynamics, and emotional factors. Existing research often neglects the lived experiences and systemic challenges faced by users.
• Significance: Understanding these challenges is critical for designing assistive technologies that enhance autonomy, dignity, and emotional well-being while addressing systemic barriers like insurance denials and caregiver shortages.
• Motivation and related work: Prior work has focused on device functionality and clinical perspectives, often overlooking the emotional, relational, and systemic contexts of assistive technology use. This study builds on disability studies and participatory design approaches to address these gaps.

Solution

• Proposed approach: The study introduces a trajectory- and ask-point–centered co-design framework and a user-led knowledge infrastructure called the Assistive-Tech Commons.
• Novelty:
  1. Empirically grounded insights into the lived experiences of powered-wheelchair users, emphasizing emotional, relational, and systemic factors.
  2. A co-design framework that centers high-frequency "ask-points" and emotional dignity in assistive technology design.
  3. A proposed Assistive-Tech Commons to consolidate community knowledge, policy resources, and peer-driven innovations into a sustainable infrastructure.
• Procedure and key techniques:
  • Conducted 55 semi-structured interviews with powered-wheelchair users across diverse contexts.
  • Thematic analysis of lived experiences, focusing on daily routines, caregiving dynamics, and systemic barriers.
  • Proposed actionable design principles and workflows based on participant narratives.

Results

• Concrete findings:
  • Participants required an average of 8.7 hours of daily caregiving, with high-frequency dependencies in tasks like reaching objects (87%), food preparation (67%), and personal hygiene (62%).
  • Technologies like robotic arms (used by 5%) and low-cost tools (e.g., voice assistants, reachers) were empowering but constrained by cost, insurance, and systemic barriers.
  • Emotional factors such as privacy invasion (47%), feeling like a burden (36%), and loneliness (27%) significantly influenced technology adoption and caregiving dynamics.
• Advantage over baselines:
  • The proposed framework addresses gaps in existing assistive technology models by integrating emotional, relational, and systemic dimensions into design and policy.
  • The Assistive-Tech Commons formalizes fragmented peer knowledge and provides insurer-ready resources, bridging the gap between clinical and community expertise.
• Experiments / evaluation:
  • The study used qualitative interviews with 55 participants across 10 U.S. states, representing diverse conditions and caregiving arrangements.
  • Thematic analysis identified recurring patterns in autonomy, caregiving, and technology use.
• Limitations and future work:
  • The study focused exclusively on powered-wheelchair users, excluding manual-wheelchair users and other mobility aid users.
  • Self-reported data may introduce recall bias.
  • Future work should include longitudinal and cross-cultural studies, as well as complementary methods like ethnography.

Summary

This study explores how powered-wheelchair users negotiate autonomy, caregiving, and assistive technology within structurally constrained ecosystems. It highlights the emotional, relational, and systemic factors that shape technology adoption and caregiving dynamics. The proposed trajectory- and ask-point–centered co-design framework and Assistive-Tech Commons aim to address these challenges by centering lived experiences, emotional dignity, and systemic barriers. These findings provide actionable insights for designing sustainable, user-led assistive technology ecosystems that empower wheelchair users as co-creators of inclusive futures.