Journal on Developmental Disabilities

Some of the most interesting and rewarding research opportunities can involve community service providers, persons receiving their services, university researchers and students all sharing their commitment and curiosity about an issue of shared concern. However, the reality of meeting the needs of all members of these research teams can be complicated by different time and process demands for each group in the partnership. This presentation will explore some of the challenges, frustrations and excitement associated with community engaged enquiry.

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.

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.

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.

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

Little is known about the significant life events experienced by adults with Asperger syndrome (AS), though these may result in psychiatric illness. This study looks at the prevalence and types of significant life experiences among 51 adults with AS, the largest-available-to-date sample of adults with AS in Ontario. The most frequently reported life events (in the last two months) included: unemployment; financial problems; mistreatment; disruptions in interpersonal relations; change in living arrangements; and disruptions of routine at work or school. The majority of respondents had at least one significant life event, 58.8% had experienced at least two, and 41.2% had at least three. A significant relationship was found between the number of life events and reported levels of distress. The results suggest that adults with AS may experience significant life events more frequently than adults with other types of developmental disabilities.