Does terminology matter? Perspectives from people with limb difference, clinicians, and researchers.

ABSTRACT

OBJECTIVE: Elicit preferred terminology among people with limb difference, as well as healthcare and/or research professionals. DESIGN: Cross-sectional survey. SETTING: Online. PARTICIPANTS: A convenience sample of 122 individuals (people with limb difference n=65; healthcare and/or research professionals n=57) completed an online survey. People were included if they 1) were 18 years of age or older, 2) self-identified as having limb difference (regardless of etiology) or as a healthcare or research professional (with experience working with people with limb difference), and 3) lived in the US for the majority of the time in their selected role. INTERVENTIONS: N/A MAIN OUTCOME MEASURE(S) Importance of terminology, preference towards 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 ± 15.4; professionals=41.0 ± 14.3; p=0.001). Fewer professionals (5.3%) reported that terminology was slightly or not at all important to them, compared to people with limb difference (approximately 30%) (χ2=16.6, p=0.002). 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 preferences 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, except many people with limb difference indicated they preferred "amputee" when speaking about a population. CONCLUSIONS: The majority of 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 does not intend 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.