Conducting Research with Individuals Who Have Intellectual Disabilities: ethical and Practical Implications for Qualitative Research
Kelly D. Coons and Shelley L. Watson
Despite the acknowledgement that individuals with intellectual disabilities are the experts on their own experiences, these individuals have been largely omitted from the disability discourse. Research in the field of disability has typically been done on individuals with disabilities, rather than with them, disempowering this already vulnerable population. Qualitative methodologies, such as Participatory Action Research (PAR), can be employed to involve individuals with intellectual disabilities in the research process. A review of the literature revealed a number of ethical (e.g., obtaining informed consent and assessing capacity) and practical challenges (e.g., recruitment, data collection, analytic strategy, researcher interpretation) that interfere with researchers engaging in PAR. These challenges must be overcome in order to empower persons with intellectual disabilities to participate in research.
Partnering for Research in the Field of Intellectual/Developmental Disabilities - Lessons For participant Recruitment
Helene Ouellette-Kuntz, Yona Lunsky, Rosemary Lysaght, Lynn Martin, and Robyn Saaltink
The importance of including persons with intellectual and developmental disabilities (IDD) in research is widely recognized, yet recruitment is difficult and participation rates are low. In this paper, the recent efforts of a province-wide partnered research program - the Multidimensional Assessment of Providers and Systems (MAPS) - are used to further the discussion of research recruitment to benefit adults with IDD in Ontario and elsewhere. Specifically, we report on six studies that utilized different recruitment methods (i.e., by researchers, through a third party, or based on previous study participation) with participation rates ranging from 17% to 94%. We found that service providers and funders play a critical role in promoting participation in research to ensure that persons with IDD and their families are represented. Practical suggestions are offered for researchers to more actively seek partnerships with providers and funders to increase, not only the success of their study, but also the relevance of their work.
Family Quality of Life of Polish Families with a Member with Intellectual Disability
Elaine Ho, Nalini James, Ivan Brown, Anna Firkowska-Mankiewicz, Ewa Zasepa, Agnieszka Wolowicz, and Ewa Wapiennik
A Polish sample of 189 caregivers of individuals with intellectual or developmental disabilities was surveyed with the Family Quality of Life Survey-2006, as part of a larger study examining family quality of life (FQOL) across 26 countries. The survey has six outcome measures in each of nine domains. Caregivers rated the Health of the Family, Financial Well-Being, and Family Relationships domains as most important. However, Opportunity and Initiatives outcomes were lower, especially in the Support from Others and Support from Services domains. Families initiatives and opportunities were affected by the health of family members, financial resources available, and relationships among family members. Overall, caregivers were fairly satisfied with their FQOL despite having limited opportunities to improve their FQOL.
The Diagnostic Process of Children with Autism Spectrum Disorders: Implications for Early Identification and Intervention
Carly A. McMorris, Elizabeth Cox, Melissa Hudson, Xudong Liu, and James M. Bebko
Obtaining a diagnosis of autism spectrum disorder (ASD) often includes long delays, multiple diagnoses, and several visits to healthcare professionals. Consequently, parents often report dissatisfaction and frustration with the diagnostic process and their child's diagnosis. One hundred and sixty-six parents/caregivers of children in Canada with various ASD diagnoses completed a self-report questionnaire related to their experiences with the diagnostic process. Parents expressed high levels of satisfaction with their child's current diagnosis, despite delays and concerns related to additional psychological issues identified, particularly anxiety. Difficulties in obtaining a diagnosis may not only have a significant impact on the timing of intervention, it can also increase family stress and caregiver burden. As such, it is essential to understand families experiences in order to help improve the diagnostic process