Comparing perspectives from experts and individuals with lived experience in the Global North versus the Global South: ICF core sets for deafblindness.

backgroundAchieving equitable global health frameworks requires the intentional integration of diverse voices-both professional and lived-from across the high-resourced Global North (GN) and low-resourced South (GS). It is, however, rare that Core Set development using the International Classification of Functioning, Disability and Health (ICF) has equal data representation from both regions. Using the data from the development of Core Sets on deafblindness, we explored a unique opportunity, given the geographic distribution of data sources. We compared ICF category frequencies from the GN and GS across body structure, body function, activities and participation, and environmental factors.

methodsWe divided the data from an expert survey (n = 105) and from interviews with deafblind individuals (n = 72) by country of origin into GN and GS using the Brandt Line, representing all six regions of the WHO (28 countries). Using the ICF coding system to identify perceived categories of functioning, aggregated frequencies of unique ICF categories were compared across ICF components and chapters using chi-square statistics.

resultsSurvey data showed no significant geographic differences across activities and participation or environmental factors; however, qualitative interviews revealed significant deviations. For activities and participation, GN emphasized d9205 (socializing) and d940 (human rights), while GS highlighted d760 (family relationships). For environmental factors, GN focused on e5800 (health services) and e298 (environmental adaptations), whereas GS emphasized e5550 (associations), e310 (family), and e325 (community supports). Within the GN, survey and interview data also differed. Surveys emphasized e310, e315 and e320 (supports), while interviews highlighted e410, e425, e450, and e455 (attitudes). For activities and participation, d660 (assisting others) was more frequent in interviews. The GS showed significant within-region differences for e4 (attitudes), d9 (community, social and civic life) and d2 (general tasks and demands).

conclusionsFindings highlight the regional variations in activities and participation among individuals with deafblindness as they reflect differences in environmental factors. Rooted in cultural and resource differences, geographic region itself constitutes a key environmental factor. Expert perspectives may underrepresent differences in lived environmental realities of individuals with deafblindness. Future Core Set development will benefit from including more diverse sources.