Successful strategies for including adults with intellectual disabilities in research studies that use interpretative phenomenological analysis

Abstract

Background: Adults with intellectual disabilities are not regularly recruited as participants in health research which may be due to perceptions regarding their inability to participate meaningfully with or without significant support and anticipated difficulty in gaining ethical approval because of issues around consent and mental capacity. This means that the voices of people with an intellectual disability are often missing within health research and their experiences and views are unexplored.Aim: To share successful strategies for accessing, recruiting and collecting data from a purposive sample of adults with an intellectual disability using interpretative phenomenological analysis (IPA).Discussion: Interpretative Phenomenological Analysis was a person-centred, flexible and creative approach to adopt. Meaningful collaboration with people with intellectual disabilities, their families, carers, advocacy group managers, specialists within intellectual disability services and research supervisors was vital to the success of conducting this study. Practical strategies for including people with an intellectual disability in a study from the perspective of a novice researcher, an outsider to the field of intellectual disability, have been shared. A limitation is that participants were not included in all stages of the research process. Conclusion: Inclusion of participants with an intellectual disability in research studiesis important and achievable for healthcare researchers. A framework to support Accepted manuscript 22.3.21 researchers outside of the specialist field of intellectual disabilities has been presented.Implications for practice: Adults with intellectual disabilities often receive poor healthcare and have poorer outcomes which is perpetuated if their input into research is not facilitated. People with intellectual disabilities make valuable contributions to the evidence base; personal views and perceptions of healthcare are important if health services are to meet individual needs.

From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities

“…Regarding the reasonable accommodations within research, the model capitalizes, above all, on 20 of the works included in the final sample of this literature review, namely: Adams et al (2010), Bigby et al (2014), Boxall and Ralph (2009), , Coons and Watson (2013), Drozd et al (2021), Goldsmith and Skirton (2015); Hall (2013), Hamilton et al (2017), Herron et al (2015, Ho et al (2018), Northway et al (2015), MacDonald ( 2020 2014). This sub-dimension concerns the work of identifying a set of reasonable adaptations implemented in the context of scientific research, to accommodate specific characteristics of individuals, systematizing the rationale that underlies them, implementation experiences identified in the literature, and possible threats to the validity of the processes arising from this.…”

“…c) Developing accessible formats for informed consent, which can include accessible language and writing, for example: pictograms or easy-to-read formats (Boxall & Ralph, 2009;Drozd et al 2021;Goldsmith & Skirton, 2015;Northway et al, 2014;St. John et al, 2022;Thomson et al, 2015); In turn, these adaptations seem to raise some concerns related to the validity of the process itself, as it is considered that they may result in some threats, biases, and/or parasitic variables arising from them, which include: a) Complex regulations on the use of images and visual content, adopted by most ethics committees in the social sciences field (Boxall & Ralph, 2009…”

“…a) The use of photos of each member of the research team to accompany the name, as an accessible resource (Herron et al, 2015); b) An explanation of the purpose of the study and respective conditions at the beginning and throughout the process, giving the participants the option of having someone they trust to support them at key moments (Gjertsen, 2019); c) Treating the person as an adult and not as a label or condition (McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); d) The view that both the person and the appropriate obtaining of consent must be considered according to personal characteristics (Coons & Watson, 2013;McDonald et al, 2017;McDonald, Schwartz, et al, 2022); e) The guarantee of confidentiality, specifically considering that there may be people who are providing support to the participant. However, if they must have access to the data, it is advisable to sign a confidentiality contract/agreement (McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); f) Promoting decision-making by the participant (Burns et al, 2008;Gjertsen, 2019;McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); g) Ensuring the scientific basis of exclusion criteria (McDonald, Schwartz, et al, 2022); h) Providing different dates and times for participation, so that the investigation does not interfere with other activities (Drozd et al, 2021);…”

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

“…De forma concreta, as adaptações razoáveis promotoras de um melhor suporte das necessidades das pessoas com DI no processo de investigação científica podem incluir: a) Adoção de abordagens visuais e/ou baseadas em imagens (Boxall & Ralph, 2009;McDonald, 2021); "Esta subdimensão diz respeito a um trabalho de identificação de um conjunto de adaptações razoáveis implementadas no contexto da investigação científica, por forma a acomodar características específicas dos indivíduos (...). " b) Consideração de tecnologias de comunicação aumentativa e ou alternativa desde o desenho de investigação (Boxall & Ralph, 2009;Herron et al, 2015;Taylor & Baladin, 2020); c) Desenvolver formatos acessíveis para o consentimento informado, que podem incluir a linguagem e a escrita acessível, por exemplo, pictogramas ou formatos easy-to-read (Boxall & Ralph, 2009;Drozd et al 2021;Goldsmith & Skirton, 2015;Northway et al, 2014;St. John et al, 2022;Thomson et al, 2015); Por seu turno, estas adaptações parecem despertar algumas preocupações relacionadas com a validade do próprio processo, por se considerar que delas podem decorrer algumas ameaças, enviesamentos e/ou variáveis parasitas.…”

“…e) A garantia da confidencialidade, especificamente considerando as pessoas que estão a prestar apoio ao participante. No entanto, caso estas tenham de ter acesso aos dados, é aconselhável a assinatura de um contrato/acordo de confidencialidade (McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); f) A promoção da tomada de decisão por parte da pessoa participante (Burns et al, 2008;Gjertsen, 2019;McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); g) A garantia da fundamentação científica dos critérios de exclusão (McDonald, Schwartz, et al, 2022); h) A disponibilização de diversas datas e horas para a participação, de modo que a investigação não interfira com as restantes atividades (Drozd et al, 2021); i) A inclusão no processo de pessoas de confiança da PcDI que possam auxiliar na interpretação de pistas não verbais, em particular das que confirmem, ou não a sua vontade de participar (Mietola et al, 2017); j) Promover esclarecimentos relativamente ao caráter temporário do contato entre a equipa de investigação e as PcDI, minimizando os eventuais impactos do término abrupto da relação criada (Haines, 2017).…”