Perceptions of ability among adults with upper limb absence: impacts of learning, identity, and community

Abstract

Aims: The purpose of this research was to examine the lived experiences of adults with upper limb absence, specifically the interplay of device use, ability, and quality of life through semi-structured interviews. We sought to draw insight from these experiences to improve the practice and perceptions of adults with upper limb absence, prosthetists, and technology designers.

Methods: Semi-structured interviews were conducted and interpreted with phenomenological analysis for fourteen individuals with acquired or congenital limb absence. Through an interpretive phenomenological analysis approach, researchers employed an inductive approach to coding and identification of central themes.

Results: Participants shared high perceptions of ability and function, regardless of prosthesis or assistive technology use. Life experiences related to three dimensions strongly influenced perceptions of ability: (1) learning to live with upper limb absence, (2) developing their identity, and (3) connecting with their community. The diversity of experiences across participants highlighted the limitations of identifying “normative” pathways of recovery or device use, emphasizing the need for flexible and adaptable systems that can creatively support personal goals and needs.

Conclusions: Integration of novel platforms for professional practice, supportive communities, and technology innovation can support the evolving needs and care of individuals with upper limb absence.

Implications for rehabilitation

• In this study, perceptions of ability were largely independent of prosthetic use and each individual developed a unique toolkit of devices and strategies to support function in daily life.

• Clinicians can support perceptions of ability by promoting opportunities for community development and life-long learning.

• Informal communities, such as online networks, can provide novel device designs, resources for learning, and societal awareness to empower individuals with limb absence.

Keywords:

• Amputee
• rehabilitation
• life change events
• artificial limb
• disability
• self-help devices

Acknowledgements

The authors also wish to thank Keting Cen for her assistance with the interviews and transcription.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This research is based upon work supported by the National Science Foundation under Grant No. 1453329.