Does Terminology Matter? Perspectives From People With Limb Difference, Clinicians, and Researchers.

ABSTRACT

OBJECTIVE: To elicit the preferred terminology among people with limb difference as well as health care and/or research professionals. DESIGN: Cross-sectional survey. SETTING: Online. PARTICIPANTS: A convenience sample of N=122 individuals (people with limb difference, n=65; health care and/or research professionals, n=57) completed an online survey. People were included if they (1) were aged ≥18 years; (2) self-identified as having limb difference (regardless of etiology) or as a health care or research professional (with experience working with people with limb difference); and (3) lived in the United States for most of the time in their selected role. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Importance of terminology, preference toward person-first or identity-first terms, preferred terms, and individual perspectives on terminology preferences. RESULTS: Most participants identified as White (92.6%). Age significantly differed between groups (people with limb difference, 49.9±15.4y; professionals, 41.0±14.3y; P=.001). Approximately 50% of people with limb difference stated terminology was very or extremely important, compared to 70% of professionals (χ2=16.6, P=.002). While 73.7% of professionals reported a preference for person-first terminology, the sample of people with limb difference were more evenly split, as 42.9% reported a preference for identity-first terminology and 50.8% reported a preference for person-first terminology. The most frequently selected limb and population terms, respectively, were residual limb and individual/person with limb difference; however, many people with limb difference indicated they preferred "amputee" when speaking about a population. CONCLUSIONS: Most of the participants indicated terminology was very or extremely important, and both groups tended to prefer the terms residual limb (limb term) and individual/person with limb difference (population term). However, this study was not intended to recommend terminology, but rather help inform terminology choices that are centered around people with limb difference. Individuality and context should be considered when deciding terminology. Future studies should include more participants from racially/ethnically minoritized groups and people with limb difference who have dysvascular and/or congenital etiologies.