The experiences of adults with an upper limb loss/difference

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University of New Brunswick
Living with a congenital upper limb difference or an acquired upper limb loss is a complex and challenging experience. Physical, psychological, social, and economic barriers can lead to decreased quality of life and well-being. To understand the challenges faced by those living with an upper limb loss/difference (ULLD) and subsequently improve their quality of life, the perspectives of these individuals must be explored. Thus, the purpose of this research study was to describe the essence or meaning of everyday life for persons with ULLD. Five participants shared their experiences of living with ULLD with the researcher. Approval from the Research Ethics Board was obtained prior to the recruitment of participants. Descriptions were analyzed according to Giorgi's descriptive phenomenological method as described by Giorgi & Giorgi (2003) and Aquino-Russell (2006). The Canadian Model of Occupational Performance and Engagement was utilized as the theoretical framework (Polatajko, Townsend, & Craik, 2007). The core finding of the study was: Acceptance is marked by cognitive well-being and influenced by the environment. Stereotypes present challenges to well-being; however, defying stereotypes imparts feelings of pride. Peer support is desired among persons with ULLD but is found wanting. Completing difficult tasks often requires determination and modification. As well, aging introduces new concerns for some individuals with ULLD. Finally, the prosthesis is viewed as either part of the person, part of the environment, or a combination of both. This study provides valuable information to expand understanding and inform future practices, policies, and research, with important implications for helping individuals with ULLD.