Value, vulnerability and voice: An integrative review on research assent

Hart, Sarah; Pascucci, Mikayla; Sood, Sheetal; Barrett, Emily M.

doi:10.1111/bld.12309

Cited by 9 publications

(12 citation statements)

References 45 publications

(57 reference statements)

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“…Although suggestions to support scholars addressing these barriers have been offered (e.g. Hart et al, 2020; Horner-Johnson & Bailey 2013; Lennox et al, 2005), they have yet to be fully embraced and implemented in SP.…”

Section: Addressing Ei Barriers At the Intersection Of Id And Spmentioning

confidence: 99%

Elevating disabled voices: Decentering power in school psychology scholarship

Talapatra,

Snider,

McCreadie

et al. 2023

School Psychology International

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People with intellectual disabilities (IDs) have experienced involuntary and inhumane research practices. Consequently, researchers have shifted towards excluding those with IDs; caregivers, teachers, or peers compose study samples, dominating a space they indirectly experience. Researcher bias regarding intellectual capacity has resulted in a unique research gap that overlooks insights from the population the research is intended to benefit. People with ID are interested in research participation and have a right to be included in decision-making that impacts them. Emancipatory inquiry allows school psychology scholars to center student voices while also promoting social justice. Emancipatory inquiry empowers the “subjects” of social inquiry by producing knowledge that directly benefits disenfranchised populations. Emancipatory inquiry aligns with the social justice frame of DisCrit, which compels us to privilege the voices of marginalized populations and recognize that many of the gains for disabled populations have largely occurred because of the benefits they afford White, able-bodied, middle-class citizens. Using Emancipatory inquiry, school psychology scholars can prepare trainees and future researchers to conduct ethically sound research, prioritize first-person voices of those with ID, provide socially valid services to students and their families, and move school psychology closer to partnership with the disabled community.

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Section: Addressing Ei Barriers At the Intersection Of Id And Spmentioning

confidence: 99%

Elevating disabled voices: Decentering power in school psychology scholarship

Talapatra,

Snider,

McCreadie

et al. 2023

School Psychology International

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“…No conjunto dos artigos que contam na análise temática, sete abordam este tema, nomeadamente: Bigby et al (2014), Boxall e Ralph (2009), Gjertsen (2019), Hart et al (2020), Kuri e Schormans (2022), Schwartz e Durkin (2020) e Walmsley et al (2018).…”

Section: • De Consultoriaunclassified

Do Tokenismo à Autodeterminação: Considerações Éticas na Investigação com Pessoas com Deficiência Intelectual

Casimiro,

Sousa,

Luz

et al. 2023

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Ao longo da história foram vários os momentos que nortearam a criação de princípios éticos para a investigação científica com seres humanos, de forma a combater abusos. Iniciando-se em 1947, o Código de Nuremberga foi desenvolvido após as atrocidades cometidas por médicos nazis durante a Segunda Guerra Mundial e protege a autonomia e o consentimento voluntário da pessoa. A Declaração de Helsínquia, constituída em 1964, foi desenvolvida após a Associação Médica Mundial notar falhas no Código de Nuremberga e estabelece princípios básicos relacionados com a investigação clínica e o cuidado profissional e a investigação clínica não terapêutica. A Declaração acrescenta, entre outros, a introdução do consentimento por outrem, com habilitação legal para autorizar a participação de outra pessoa num processo de investigação científica. Durante as subsequentes revisões desta declaração, já foram adicionados pontos relativos a grupos e/ou indivíduos vulneráveis, comitês de ética, privacidade, confidencialidade, entre outros. Ao observarmos o contexto da deficiência, à documentação ética mencionada, junta-se necessariamente, e desde o ano de 2008, os pressupostos da Convenção sobre os Direitos das Pessoas com Deficiência da Organização das Nações Unidas (ONU). Em particular, no que se refere à ideia de “desenho universal” que esta postula, enquanto devendo nortear a concetualização dos processos de investigação e de criação de novos produtos ou tecnologias. No entanto, a aplicação destas premissas ao contexto específico das Pessoas com Deficiência Intelectual, em particular, parece ainda embater em visões sociais estigmatizantes, fortemente assentes num modelo médico da deficiência, que tende a descurar a participação das mesmas e o valor do seu contributo para a investigação científica enquanto imperativos éticos. Neste sentido, o presente documento apresenta um modelo conceptual e as propostas de guidelines éticas que dele decorreram para a investigação com Pessoas com Deficiência Intelectual. O modelo conceptual, exposto na parte dois, agrega-se em sete grupos: (1) acessibilidade do processo de investigação, onde se abordam temas como adaptações razoáveis, exequibilidade, diversidade e representatividade, boas práticas, e barreiras; (2) os desequilíbrios de poder, nomeadamente relativos ao poder assimétrico, tokenismo e gatekeeping; (3) vulnerabilidade, enquanto forma de exclusão e de poder e os risco a si associados; (4) autodeterminação relativa à investigação científica, grupos colaborativos e a sessões de consultoria; (5) incapacidade para consentir, especificamente sobre os dilemas éticos, flutuações de capacidade, perceção de risco e avaliação da capacidade para consentir; (6) consentimento informado, em relação à proximidade, adaptações e barreiras; e, por fim, (7) abordagem metodológica, no que concerne aos desafios éticos colocados pela mesma e as oportunidades que dela advêm. Após uma descrição detalhada sobre as temáticas inerentes a cada grupo, na parte três do documento, é possível encontrar, de modo sistematizado, as propostas de guidelines, escritas tendo em vista uma operacionalização facilitada no planeamento de um desenho de investigação. É importante relevar que, como próximos passos, as propostas de guidelines serão convertidas em linguagem acessível, por forma a serem validadas empiricamente junto de Pessoas com Deficiência Intelectual.

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“…(2017, 78) argue that what is considered to be harmful is often not objective at all but subjective. Viewing certain populations as uniformly more vulnerable stands in opposition with current trends in inclusive research and the ambition to do research “with” and not “on” people based on the notion that people with disabilities are “experts on their own lived experiences” (Hart et al., 2020, 159).…”

Section: The Paradox Of Vulnerabilitymentioning

confidence: 99%

“…Of course, some people may need assistance in decision‐making and thus finding themselves in an unequal power relationship with actors in their surroundings. However, overlooking people with disabilities as part of human diversity (Hart et al., 2020, 155) and viewing them as generally more vulnerable beings may in turn prevent them from acquiring important decision‐making experience that in itself can contribute to bolstering views of this population as particularly vulnerable and dependent (Morris, 2004, 431–432).…”

Section: Vulnerability and Intellectual Disabilitymentioning

confidence: 99%

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Concerns regarding the use of the vulnerability concept in research on people with intellectual disability

Snipstad

2021

Brit J Learn Disabil

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Accessible Summary People with intellectual disability are often described as “vulnerable” or a “vulnerable group.” The paper focuses on vulnerability as part of an ethical discussion in research. The paper says that people with intellectual disability are not necessarily more vulnerable than others in all areas of life but, like everyone else, experience many social contexts that may or may not place them in vulnerable positions. The paper is concerned with how the negative attributes often related to the label intellectual disability and vulnerability affect the decisions and views of researchers. Abstract BackgroundPeople with intellectual disability are often defined as a vulnerable group. The feminist philosopher Jackie Scully argues that vulnerability is often associated with qualities such as immaturity, helplessness, victimhood, passivity and so forth. As research is a social activity, the qualities associated with vulnerability affect researchers’ decisions about who to include and exclude from their research project as well as influencing their interpretations of the research participants’ answers, behaviour and actions. This may result in excluding people with intellectual disability from research or that their ways of being becomes interpreted as mere symptoms of their diagnosis rather than subjective opinions and experiences. ConclusionBy addressing these issues through the work of Norwegian philosopher Hans Skjervheim, this paper contests traditional interpretations of vulnerability and instead argues that vulnerability should be related more specifically to each individual research project and prompt questions such as: How do we protect these particular participants from harm?

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Value, vulnerability and voice: An integrative review on research assent

Cited by 9 publications

References 45 publications

Elevating disabled voices: Decentering power in school psychology scholarship

Elevating disabled voices: Decentering power in school psychology scholarship

Do Tokenismo à Autodeterminação: Considerações Éticas na Investigação com Pessoas com Deficiência Intelectual

Concerns regarding the use of the vulnerability concept in research on people with intellectual disability

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