Research Priorities and Protections

Gavidia-Payne, Susana; Jackson, Mervyn

doi:10.1007/978-3-030-20843-1_15

Handbook of Intellectual Disabilities

2019

DOI: 10.1007/978-3-030-20843-1_15

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Research Priorities and Protections

Susana Gavidia-Payne

Mervyn Jackson

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Cited by 3 publications

(1 citation statement)

References 52 publications

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“…Adults in the general population are assumed capable of consenting to research, rendering an evaluation of their competency unnecessary.Therefore, in Fischer's words, adults with ID might be "unfairly held to a higher standard of competency than commonly applied to the general population" (Fischer 2003). In addition, individuals with ID have little opportunity to practice decision-making skills, which may hinder decision-making competency independently of cognitive status(McDonald et al 2009;Gavidia-Payne and Jackson 2019).…”

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confidence: 99%

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements

Meierer

Borry²,

Sanchini

2022

Accountability in Research

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The history of human-subject experimentation has shown the need for safeguards to protect certain populations from abuse. Balancing participant protection with adequate representation of the adult intellectual disability population in research presents an important challenge. Our study aimed to analyse guidance on the appropriate inclusion of adults with intellectual disability who are or are not able to consent to biomedical research participation. Terminology, consent and type of ethically acceptable research provisions relevant to adult participants with intellectual disability were comprehensively reviewed in a selection of 17 international and national ethical research guidelines and statements. Most guidelines and statements recommend that adult participants with ID who are unable to consent be included when it is not possible to conduct the same research with adults capable of independent decision-making, or when there is therapeutic benefit and only minimal risk. Assent requirements for incapacitated adults are not explicitly mentioned in most documents reviewed. There appears to be room for further description of the importance of careful capacity assessments and solid assent requirements in ethical research guidance documentation to promote meaningful participation of adults with intellectual disability.

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mentioning

confidence: 99%

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements

Meierer

Borry²,

Sanchini

2022

Accountability in Research

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Evaluation of Social Interventions with People with Disabilities: A Systematic Literature Review

Mira-Aladrén,

Martín-Peña,

Gil-Lacruz

2024

Social Work Research

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This article aims to review the scientific production on social interventions (SI) in the field of persons with disabilities (PWD) and their families and to analyze its evaluations. To do so, it starts from the context of the social model of care of the United Nation’s Convention on the Rights of Persons with Disabilities and the sustainable development goals, and the evaluation of SI. The methodology proposes a systematic review of the existing literature on SI with PWD and their evaluation, based on the preferred reporting items for systematic review and meta-analysis (or PRISMA) model, including 19 articles. The results highlight issues such as the scarcity of publications with evaluations, the lack of homogeneity in the evaluation indicators used, the large number of interventions related to intellectual disability, and a large proportion of community interventions. This scoping review assists future research to consider different questions about evaluation indicators and implementation of the social model or social inclusion, among others.

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Discapacidad, inclusión y empleo público, ¿es posible mejorar su relación? Reflexiones a partir de una experiencia piloto en la Universidad de Zaragoza

Mira-Aladrén,

Yagüe-Sanjuán,

Latorre-Dena

2024

AIS

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Introducción. - La legislación relativa al empleo público y a los derechos de las personas con discapacidad reconoce una obligación de cuota de reserva para personas con discapacidad intelectual del 2% de las plazas convocadas. Pese a ello, la idiosincrasia de las administraciones públicas en España y, en concreto, de las universidades, dificultan la efectividad de esos derechos. Por ello, se plantea un programa piloto de formación teórico-práctica y promoción del empoderamiento para fomentar su inclusión laboral. Objetivo.- El objetivo de este artículo es presentar y evaluar el citado programa piloto, planteando propuestas para la mejora del acceso al empleo público de este colectivo. Metodología.- Para ello, se evaluó tanto su efectividad, mediante la Escala de Calidad de Vida, como la satisfacción de familias, participantes y profesionales con el mismo, con un cuestionario ad hoc. Resultados.-Los resultados muestran que, pese a la mejora en la calidad de vida, se detectaron déficits como la necesidad de sensibilización y formación a la comunidad universitaria, la relevancia de la mediación laboral o la relevancia de la realización de adaptaciones individualizadas. Discusión.- Con todo ello, se plantean una serie de mejoras en la implantación de programas de este tipo, así como en la inclusión de las personas con discapacidad intelectual en el empleo público, en general.

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Research Priorities and Protections

Cited by 3 publications

References 52 publications

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements

Evaluation of Social Interventions with People with Disabilities: A Systematic Literature Review

Discapacidad, inclusión y empleo público, ¿es posible mejorar su relación? Reflexiones a partir de una experiencia piloto en la Universidad de Zaragoza

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