Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust.
The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered the Community Living Attitudes Scale (Henry et al., 1996), a measure of attitudes toward people with intellectual disability developed in the United States, to 262 community members and 190 disability service providers in Pakistan. Confirmatory factor analysis found a 4-factor solution (empowerment, similarity, exclusion, and sheltering) fit the Pakistani sample. More positive attitudes were observed in staff serving people with intellectual disability, females, Christians, Hindus, Sunnis, and people with greater education. We discuss implications for research, theory, and practice.
From an ethical standpoint, there are questions about the best ways to include adults with intellectual and developmental disabilities in research. Scholarship reflects divergent responses to these enduring questions and values that can be at odds with one another. To deepen our understanding of beliefs in the scientific community about how to conduct ethically strong research with adults with intellectual and developmental disabilities, we examined the views of researchers who conduct this research and ethics review board members on ethical principles and practices. We conducted four focus groups with 17 researchers and ethics review board members. We asked participants to discuss how to ethically conduct research, relevant factors to consider, appropriate ways to address ethical concerns, and the role of ethical and civil rights principles. Findings indicate support for the use of ethical principles and newer models of disability to promote inclusion in research, a focus on researchers' interpersonal skills and relationships to participants, questions about the best approaches to recruitment, consent, and compensation, and strategies to promote participation in research. These findings reflect the socio-ecological model of disability, civil rights-based interpretations of ethical principles, the provision of accommodations as an ethical imperative, the potential benefits of promoting relationships between researchers and persons with intellectual and developmental disabilities, and the need for dialogue between researchers and ethics review board members.In the USA, these bodies are federally mandated to review federally funded research, although many institutions use them to review all research with human subjects, irrespective of funding source.
IntroductionThe experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically. Method The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice.Findings Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians. Discussion We discuss implications for research and practice.
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