Consigned to the margins: a call for global action to challenge intellectual disability stigma

Scior, Katrina; Hamid, Aseel; Hastings, Richard P.; Werner, Shirli; Belton, Catherine; Laniyan, Adebisi; Patel, Maya; Groce, Nora; Kett, Maria

doi:10.1016/s2214-109x(16)00060-7

Cited by 33 publications

(31 citation statements)

References 3 publications

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“…Stigma is considered one of the most important concerns of our era, especially in relation to conditions such as HIV, leprosy, and mental illness. However, scant attention has been paid to stigma toward people with ID, even when it affects an estimated of 300 million people globally (Scior et al, 2016). The results of Table 3 Included studies organized by stakeholder groups and methodological approach 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.…”

Section: Discussionmentioning

confidence: 99%

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

Tenorio

Donoso

Ali

et al. 2020

Policy Practice Intel Disabi

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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.

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Section: Discussionmentioning

confidence: 99%

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

Tenorio

Donoso

Ali

et al. 2020

Policy Practice Intel Disabi

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“…As housing availability and affordability is in decline in urbanized city centers around the world [ 29 ] and people with intellectual disability continue to experience layers of disadvantage [ 30 ], those with intellectual disability face limited opportunities to claim the right to make choices about where they live, who they live with, and who provides support to them and how. This research provides information upon which informed decisions can be made with and by people with intellectual disability so that they may live the life they choose to lead, participating and living in the communities of their choice.…”

Section: Discussionmentioning

confidence: 99%

Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health

Carnemolla¹

2020

JMIR Res Protoc

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Background Understanding the outcomes associated with both receiving and providing support to people with intellectual disability in specific settings can facilitate the alignment of health providers, community care providers, architects, and urban planners to strengthen levels of autonomy and community participation of people with intellectual disability living in the community. This study explores the impact of providing support (available 24 hours a day) for people with intellectual disability in a high-density apartment. It seeks the perspectives of people with intellectual disability who have moved into an apartment from a group home (where 4-6 people with disability live), their families, and support staff. It will enable comparison between two models of supported accommodation, group homes and individualized apartments, in a community setting. Objective The aims of this study are to explore the impact of an individualized apartment model of supported accommodation in a high-density setting on the well-being, autonomy, and participation of people with intellectual disability living and receiving support; the experience of providing care or support; and how this setting impacts the logistics of how quality support is provided. Methods Qualitative research methods were employed as the primary means of collecting and analyzing data. There are two main sources of data in this study: (1) semistructured interviews with participants in up to 3 waves (pre, post 1, and post 2) and (2) pre- and postoccupancy evaluation data on the design, layout, and location details of the built environments. Coded interview data will be paired with pre- and postoccupancy evaluations of the two accommodation settings. Results As of May 2020, we have recruited 55 participants. There have been 96 interviews conducted in 2 waves with people who have moved into supported accommodation, families, and staff. Collected data are currently being analyzed. We expect the results of the trial to be published in a peer-reviewed journal in late 2020. Conclusions This paper sets out a study of an alternative housing and support model for people with intellectual disability. It will capture personal experiences of people with intellectual disability receiving support in an apartment compared to their experiences in a group home. It will also capture the experiences of support staff working in the new setting and reveal how this differs from a group home setting. The inclusion of pre (group home) and post (apartment integrated into a community setting) measures addresses evaluative and comparative questions around the nature and impacts of the small-scale apartment and support model for both those who live and receive support, and those who support them. International Registered Report Identifier (IRRID) DERR1-10.2196/18248

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“…Nevertheless, despite the high hopes of families, Scior et al (2016) have warned that in many middle- and low-income countries children and adults with intellectual disabilities run a high risk of stigmatization both from within and outside families, and this was reflected in excerpts from the data relating to prejudice from other families and from those in the health professions. Prior findings (Chadwick et al, 2013) have demonstrated that the devaluation of people with intellectual disabilities within communities can cause repeated stigma and upset to family carers.…”

Section: Discussionmentioning

confidence: 99%

“…Scior et al (2016) have estimated that 2% of people with disabilities worldwide have an intellectual disability (around 300 million). More specifically, Hartley and Wirz (2002) estimated from a small-scale survey in Africa that 50% of disabled people presented at their health centres had a communication disability.…”

Section: Introductionmentioning

confidence: 99%

Meeting the communication support needs of children and young people with intellectual disabilities in the Bolivian Andes

Buell

Chadwick

2017

J Intellect Disabil

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Consigned to the margins: a call for global action to challenge intellectual disability stigma

Cited by 33 publications

References 3 publications

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

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

Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health

Meeting the communication support needs of children and young people with intellectual disabilities in the Bolivian Andes

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