Navigating the maze: ethics approval pathways for intellectual disability research: Table 1

Thomson, Allyson; Roberts, Peter; Bittles, Alan H.

doi:10.1136/medethics-2012-100899

Cited by 9 publications

(9 citation statements)

References 19 publications

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“…Ethics approval was obtained from Edith Cowan University Human Research Ethics the sections of the survey that related to them. Data relating to an adult with AS or PWS who did not have a legal guardian and could not provide their own consent were not eligible for inclusion [44].…”

Section: Ethics and Consentmentioning

confidence: 99%

“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

Thomson

Glasson

Roberts

et al. 2016

Disability and Rehabilitation

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Purpose: This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS) in Western Australia, and identified their coping strategies. Method: Parents of 19 offspring with AS and PWS participated in the Family Stress and Coping Interview which provides a stress level score, and discussion of stressors and coping methods associated with 24 life situations, two of which are reported. All text was examined using directed content analysis. Results: Family carers (14/19) reported high stress associated with the initial diagnosis of AS or PWS in their offspring; and finding time for themselves. Stressors identified included lack of quality information about the disorder, time constraints, and physical and emotional tiredness. Parents adopted a variety of coping strategies, including learning about the disorder, accepting the situation, seeking instrumental and social supports, and dealing with problems. Conclusions: No specific coping strategy was associated with reduced stress. However, parents felt that accurate and timely information during the diagnostic period helped. Parents used family and community support although there were difficulties accessing respite care. Government agencies, service providers, family members, and peer support associations should provide practical and emotional support to assist parents of offspring with AS and PWS, and indeed any form of intellectual disability, across the lifespan. Implications for Rehabilitation  Long-term caring for offspring with AS or PWS can involve considerable stress for parents.  Stress has been associated with poorer health outcomes for parental carers.  Parents need a variety of practical and emotional supports to cope with stress, including timely access to information.

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Section: Ethics and Consentmentioning

confidence: 99%

“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

Thomson

Glasson

Roberts

et al. 2016

Disability and Rehabilitation

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“…O consentimento informado é uma componente ética essencial em qualquer investigação, promovendo a autonomia e o direito à autodeterminação das pessoas que participam no estudo (Andre-Barron et al, 2008;Thomson et al, 2014). Como tal, a informação nele contida deve ser relevante e apropriada às competências conceptuais e de compreensão de potenciais participantes (Andre-Barron et al, 2008).…”

Section: Consentimento Informadounclassified

“…• Participação livre e voluntária durante o estudo (Andre- Barron et al, 2008;Ghosh, 2013;Thomson et al, 2014).…”

Section: Do Tokenismo à Autodeterminaçãounclassified

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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“…There are particular concerns that must be addressed when designing and conducting research with vulnerable people (McDonald, Conroy, & Olick, 2017;Thomson, Roberts, & Bittles, 2014). For this study, the capacity of potential participants to express understanding, freely give consent, and coherently communicate if or when they wish to withdraw their participation were key ethical concerns (Hamilton et al, 2017;McDonald et al, 2017).…”

Section: What Is Known About Research With People With Nonverbal Autismmentioning

confidence: 99%

Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

Hills

Clapton

Dorsett

et al. 2020

Journal of Social Inclusion

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Current academic literature exposes a paucity of information about people diagnosed with Level 3 (severe social and communication deficits requiring substantial support) autism from their own perspective. Most research pertaining to this population has obtained data from secondary sources such as a parent or caregiver. This paper describes the methodological approach to a study exploring the spirituality of people with Level 3 autism, using interview as a strategy for sourcing data. The study was intentionally designed to work inclusively with this population, rather than conducting research on or about them. As such, opportunity was provided for participants to be direct respondents in the research process. Participants were seven adults, aged between 23 and 53, who had been diagnosed with Level 3 autism. A bricolage approach incorporating participant's personal narratives provided an inclusive method for working with people who do not use spoken language to communicate. As communicating with this population necessitates the use of some type of augmentative device, certain strategies were adopted to address the particular practical, methodological and ethical challenges confronted during the research process. Interviews resulted in a rich source of data, providing unique insights into the lived experience of a severely under researched population. This study demonstrated that with researcher flexibility, a methodology that provides participants meaningful and inclusive involvement is not only possible, but beneficial in learning more about this marginalised group. Furthermore, this paper introduces a methodological approach that provides a platform for further research concerning people who do not communicate by speech.

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Navigating the maze: ethics approval pathways for intellectual disability research: Table 1

Cited by 9 publications

References 19 publications

“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

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

Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

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