Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research

Abstract

A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

“…We thus fund ourselves with too little information to address the pressing disparities experienced by people with intellectual disability, alongside conditions that threaten justice. To address tenacious disparities and promote human rights, we must respectfully and safely include people with intellectual disability in population-specific and general population research (Brooker et al, 2014; Feldman, Bosett, Collet, & Burnham-Riosa, 2013; Iacono & Carling-Jenkins, 2012; Northway, 2014; Welch et al, 2015). Righting past wrongs requires attention to promoting research benefits desired by community members (Dresser, 2014); importantly, like the general population, the prospect of direct and/or indirect benefits motivates adults with intellectual disability to participate in research (McDonald, Kidney, & Patka, 2012).…”

What's the Harm? Harms in Research With Adults With Intellectual Disability

“…However, social and ethical concerns present challenges to their involvement, and put them at risk of exclusion ( Brooker et al, 2014 ; Feldman, Bosett, Collet, & Burnham-Riosa, 2013 ; Northway, 2014 ). For example, the mistreatment and marginalization of people with intellectual disability and their varied degrees of cognitive impairment, give rise to concerns about the ability to make participation decisions and to safely manage research participation experiences ( Fisher, Cea, Davidson, & Fried, 2006 ; Freedman, 2001 ; McDonald, Kidney, Kimmel, et al, 2009 ).…”

“…The scientific community may also believe that adults with intellectual disability are uniquely vulnerable to psychological harm ( McDonald, Kidney, Kimmel, et al, 2009 ). Though safeguarding participants is paramount, these views are concerning as they may unnecessarily restrict the autonomy of adults with intellectual disability (a violation of human rights), and contribute to their exclusion from research ( Brooker et al, 2014 ; Feldman et al, 2013 ; Northway, 2014 ). Further, views of the scientific community may not fully reflect those of community members, especially those of adults with intellectual disability; divergent views could have significant implications for feelings of respect and willingness to participate in research among community members.…”

Validez de contenido y confiabilidad inter-observadores de Escala Integral Calidad de Vida

“…Algunos autores han llamado la atención sobre el poco interés que las investigaciones sobre salud pública muestran por el estudio de personas con discapacidad intelectual (Brooker et al, 2015). Aunado a esto, uno de los grandes obstáculos para el desarrollo de la investigación en el campo de la discapacidad y rehabilitación en el Perú, es la escasez de escalas y/o instrumentos de medición sobre discapacidad intelectual, que reúnan criterios de validez y confiabilidad.…”