Stigma Toward Persons with Intellectual Disability in South America: A Narrative Review

Abstract

People with intellectual disability (ID) form one of the most underserved/stigmatized groups in society. Published data have documented stigma toward this population group in different countries. However, this phenomenon has received scant attention in South American countries. The aim of this work is to conduct a systematic search of published and gray literature in the area of stigma toward persons with ID within the 12 countries of the region to explore expression of stigma toward people with ID in the region. Systematic research of published data and gray literature, based on a previous published protocol, was run in this work. The search strategy included terms related to IDs being combined with stigma, prejudice, attitudes and stereotypes, and with the names of all the South American countries. Due to the known relationship between ID and Autism Spectrum Disorder, this term was included in the search. The search was conducted in English, Spanish, and Portuguese. A narrative approach to results is presented. Available information is organized by stakeholder groups, including persons with ID, families, caregivers, and mental health workers. The quality of the studies was analyzed based on the Mixed Method Appraisal Tool Version 2018, and results are variable. The results of the narrative review are indicative of the limited scientific study of stigma toward people with ID in South American countries and the clear sense that people with ID living in those countries report experience of stigmatizing attitudes. Future research, at population level, is needed in the region to ensure improvements in the quality of life and in the civil participation of people with ID.

As far as possible: The relationship between public awareness, social distance, and stigma towards people with intellectual disability

“…Studies have also reported national differences in social acceptance and awareness of ID related to literacy about the condition (Zeilinger et al, 2020). A narrative review presented by a joint UK‐Chile team found that there is a paucity of data available about stigma towards people with ID in South America (Tenorio et al, 2020).…”

“…Regional epidemiological studies show a higher birth rate of babies with Down Syndrome compared to international rates (2.7/1000 vs. 1.0/1000) (Nazer & Cifuentes, 2011; Potier & Reeves, 2016). Persons with ID form a considerable group in Chile that has, until now, remained largely invisible (Tenorio et al, 2020).…”

“…A published narrative review showed the lack of specific information about public stigma towards people with ID in South American countries (Tenorio et al, 2020). This literature gap impacts negatively in the design and implementation of public policies oriented to people with IDD.…”

Factors leading to effective social participation promotion interventions for people with intellectual disability: a protocol for a systematic review

“…ID is a neurodevelopmental condition characterized by differences in cognitive development and adaptive behavior as determined by standardized assessment procedures [3,4]. While self-advocacy groups have had positive impacts for people with ID [5], they still face barriers to participation due to stigma related to differences in verbal communication and learning difficulties, along with the kinds of support they require [6][7][8]. Adults with ID want to be heard, to participate in their life choices, to be treated as adults and accepted as individuals [2].…”

PaísDI: Feasibility and effectiveness of an advocacy program for adults with intellectual disability and their stakeholders' groups in Chile

“…Chile has 2.8 million people with disability; 20% of them have intellectual disability (National Disability Service, 2015). People with intellectual disability face high rates of stigma, discrimination and social barriers (Ditchman et al, 2013; Tenorio et al, 2020), hampered by exclusionary legislation, with restricted access to education and health services, low participation, and a weak exercise of their citizen rights (Espejo Yaksic & Lathrop Gómez, 2019; Montero & Lagos, 2011; Rotarou & Sakellariou, 2017). Examples of this exclusion are the high prevalence of forced sterilisation among women with intellectual disabilities (Chacón et al, 2017), legal frameworks allowing for the removal of parental rights based on outdated notions of their incapacity to care for newborn babies, and the rejection of children and adolescents from schools because of neurodevelopmental conditions (Obando & Ochoa, 2020).…”