People with Intellectual Disabilities Can Speak for themselves! A Methodological Discussion of Using People with Mild and Moderate Intellectual Disabilities as Participants in Living Conditions Studies

Abstract

In 2016-2017, a living conditions survey was conducted among people with intellectual disabilities in Sami areas in Norway. The aim of this article is to discuss methodological aspects of carrying out living conditions studies where people with mild and moderate intellectual disabilities answer the questions themselves. What kinds of methodological challenges related to the reliability and validity of the study arise? How do we cope with these challenges? How can they affect the quality of the study? The challenge, among other things, is whether we measure what we want to measure. We argue it is possible to let people with intellectual disabilities answer surveys if we carefully consider methodological and research ethical issues throughout the entire research process. To let people with intellectual disabilities answer for themselves will strengthen the quality of the research. At the same time, we must recognise the limitations.

How entrepreneurship drives life satisfaction among people with intellectual disabilities (PwID): a mixed-method approach

“…The questionnaire was developed using simplified and easy-to-read terminology, as it had to be easy to understand owing to the great cognitive difficulties PwID may have (Gjertsen, 2019). The questionnaire was reviewed by four academics, an entrepreneurship support person and two people with cognitive disabilities in order to check that all the questions were understandable.…”

Understanding the Concepts of Death in Bereaved Teens with Intellectual Disabilities: An Examination of Measurement Tools

“…Additionally, the vulnerable population of teens with ID needs to be strongly considered due to the historical social vulnerability of persons with ID (Fisher et al, 2016) and the protections needed for research with children and teens, including issues related to informed consent and assent (Crane & Broome, 2017). Some researchers argue that the voices of individuals with ID need to be incorporated into the research process (Gjertsen, 2019), which has prompted the recent development of self-report tools specifically for use with bereaved adults with ID (Dodd et al, 2021; McEvoy et al, 2012; O’Keeffe et al, 2019). However, such tools can be used only with individuals who can demonstrate the adaptive and intellectual functioning needed to engage in self-report.…”

“…The DSM-5 categorizes IDs under the broad umbrella of neurodevelopmental disorders, due to the manifestation during childhood and the impairment in social, academic, personal, and occupational functioning (APA, 2013). Varying levels of support may be needed for individuals with ID in navigating daily functioning and novel situations, and in understanding and incorporating new or complex information and skills (Gjertsen, 2019; Maulik et al, 2011). Given the additional physical and emotional transitions from adolescence to young adulthood, and developing cognitive maturity, teens with ID may have particular vulnerability in relation to significant life changes (Haider & Zaman, 2022).…”

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

“…Durante o processo de investigação científica, as boas práticas identificadas incluem: a) Recurso a fotografias de cada elemento da equipa de investigação ao acompanhar o nome, como recurso de acessibilidade (Herron et al, 2015); b) Explicação do propósito do estudo e respetivas condições no início e durante todo o processo, dando opção à pessoa participante de ter alguém de confiança a apoiar em momentos chave (Gjertsen, 2019); c) O tratamento da pessoa enquanto pessoa adulta e não como um rótulo ou condição (McDonald, Conroy, Kim, et al, 2016;McDonald et al, 2017); d) A visão de que a pessoa e a obtenção de consentimento de modo adequado devem ter em consideração as suas características pessoais (Coons & Watson, 2013;McDonald et al, 2017;McDonald, Schwartz, et al, 2022); "(...) é absolutamente imprescindível que a equipa estude quais as expressões, termos e designações mais amplamente aceites pelos indivíduos (...) promovendo o respeito e a autodeterminação através da linguagem adotada. " e) A garantia da confidencialidade, especificamente considerando as pessoas que estão a prestar apoio ao participante.…”