Search

Background: To address the growing concerns over poor mental health experienced by adults with intellectual disabilities due to the COVID‐19 pandemic, a national virtual mental health course was delivered and evaluated. Methods: This mixed methods study utilized both qualitative and quantitative assessments. Participants were 27 adults with intellectual disabilities who participated in the 6‐week course. Participants completed measures of self‐efficacy and well‐being at three time points and qualitative satisfaction measures at post and follow‐up. Results: Attendance was high and the course was feasible and acceptable to participants. Positive changes related to mental health self‐efficacy were detected (p =.01), though mental well‐being did not improve. Conclusion: The study provided evidence for the feasibility and value of the course for this population. Future research should examine how virtual courses could support the population in terms of pandemic recovery and how courses may work for individuals who are less independent. [ABSTRACT FROM AUTHOR]

Background: A limited number of studies have explored religion's role in the intimate lives of adults with intellectual disabilities. This paper illustrates how religion, both of disabled people and those around them (e.g., family members, support workers), can shape the attitudes and experiences of disabled people toward sexuality. Method: This paper draws on in‐depth interviews with adults with intellectual disabilities and support workers from two exploratory projects in Canada. Results: Participants with intellectual disabilities talked about how religion provided a network that served to counter their social isolation and a pool of potential intimate partners, as well as some guidance for maintaining relationships. Support workers discussed the influence of organisational values in their practices related to sexuality. Conclusions: Religion shapes disabled sexualities in various ways, sometimes supporting or constraining sexual expression. This paper invites disability scholars to consider religion when researching the intimate lives of disabled people. [ABSTRACT FROM AUTHOR]

Background: Direct support professionals (DSP) are instrumental in supporting the health care of individuals with intellectual disabilities, yet receive little training and support for this role. We implemented a capacity building intervention for DSPs in a community agency in Ontario, Canada. This study evaluated the perceived value and feasibility of the intervention and the value of a structured implementation approach. Method: The intervention included communication tools, a health resource toolkit, and training. A mixed methods evaluation was used to collect feedback from DSPs and people with intellectual disabilities. Results: Participants generally found the intervention valuable and feasible. Although practice change is difficult, extensive engagement and being responsive to feedback were helpful strategies. The primary concern reported by DSPs was resistance from health care providers. Conclusion: An important next step is to engage health care providers to ensure the tools are valuable and feasible for everyone involved in the health encounter. [ABSTRACT FROM AUTHOR]

Background: Many individuals with intellectual disabilities and their caregivers struggle to provide accurate and complete information to healthcare providers. Method: The present authors provided personal medical information cards (PMICs) containing contact and medical information to 52 Canadian adults with 22q11.2 deletion syndrome, a genetic condition associated with intellectual disability. The authors invited them and/or their caregivers to complete a user satisfaction survey concerning usage of the card. Results: Forty‐eight (92%) patients or their caregivers completed the survey. Twenty‐two (46%) respondents used the PMIC over a median of 8 months during encounters with doctors and other professionals, and a majority of these used it more than once. Users reported finding the PMIC "very helpful" (86%) or "helpful" (14%), providing necessary information, speeding up interactions with professionals and helping avoid repeat storytelling. Conclusion: Providing a PMIC to individuals with intellectual disabilities and their caregivers could help improve patient safety and assist in advocacy. [ABSTRACT FROM AUTHOR]

Background: This study examines newcomers with intellectual and developmental disabilities compared to other adults with intellectual and developmental disabilities in Ontario, Canada. Methods: This population‐based retrospective cohort study used linked health and social services administrative data to identify adults with intellectual and developmental disabilities as newcomers, or non‐newcomers, and compared their health status and health service outcomes. Results: Among those with intellectual and developmental disabilities, compared to non‐newcomers, newcomers generally had lower or similar rates of health issues, except for higher rates of psychosis. Newcomers also had slightly greater use of community‐based health services, but less hospital use. Conclusion: Trends among those with the intellectual and developmental disabilities were consistent with general population trends; newcomers had lower rates of many health issues and lower hospital use. It also underscores the value of understanding drivers of heterogeneity within newcomers, such as the circumstances of admission and settlement in their new country. [ABSTRACT FROM AUTHOR]

Background: The resources used in treatment for sex offenders with intellectual disabilities have had much research attention, but less has been written about how participants are expected to respond (programme mechanisms). Methods: A realist evaluation of seven programmes from the UK, Canada, USA, Switzerland and Germany was conducted. In semi‐structured interviews, programme designers elucidated how they are intended to work. The data analysis was driven by the realist concern to expose programme mechanisms and intended outcomes. Results: Two main outcomes are increasing risk management capacities and cultivating prosocial identities. These are achieved through developing insights into a person's risks, work on (sexual) self‐regulation skills, sexual boundaries and personal values and by developing meaningful social roles and positive relationships. Conclusions: Over time, there have been changes to some of the treatment resources used. However, there were little differences in terms of the intended programme mechanisms and outcomes, which remained surprisingly consistent. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods A 30-item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy. [ABSTRACT FROM AUTHOR]

Background: This study explored the way families support self‐determination in young adults with intellectual and developmental disabilities (IDD) during life transitions. Method: Qualitative case studies were conducted with two Canadian families who participated in semi‐structured interviews and ethnographic observations every quarter for one year. Analyses were informed by family systems theory and self‐determination theory. Findings: Families considered the needs and preferences of the young adults with IDD, suggesting individualized approaches for balancing independence and protection. Families set short‐term and long‐term goals for increased independence, scaffolded the learning of new skills and collaborated on important choices. Collaboration occurred to the extent that all family members perceived agency in planning and implementing transitions. Conclusions: Families supported the young adults with IDD in their psychological needs for competence, relatedness and autonomy, which allowed them to experience self‐determination. Findings have implications for supporting self‐determination and transition planning in the family system. [ABSTRACT FROM AUTHOR]

Background Employment provides an important avenue to social inclusion for most adults. A range of productivity options exist for persons with intellectual and developmental disabilities ( IDD) who wish to work, each offering unique challenges relative to inclusion. Methods This qualitative study examined the productivity experiences of people with intellectual and developmental disabilities in Ontario, Canada. A purposive sample of 74 individuals with productivity experiences spanning the spectrum of no employment to community-based jobs was selected from a pool of volunteers recruited through a mailed survey. Semi-structured interviews were conducted with individuals and family members. Interview transcripts were subjected to a team-based analysis using grounded theory methods. Results Varying needs and interests exist in regard to work. Participants revealed a multitude of factors contributing to inclusion and exclusion through productivity. Conclusions Productivity, whether paid or unpaid, can be an avenue to social inclusion. The experience of inclusion, particularly of belonging, depends on a successfully negotiated congruence between worker attributes and the social features and demands of the work environment. [ABSTRACT FROM AUTHOR]

Abstract Background No standardized tool is used in Canada for comprehensive health assessments of adults with intellectual disabilities. This study was conducted to determine the feasibility of implementing the Comprehensive Health Assessment Program (CHAP) in Manitoba, Canada. Method This was a qualitative study using a purposive sample of physicians, nurse practitioners, support workers and families. Data were collected through individual interviews and focus groups and were analysed using content analysis. Results Use of the CHAP was perceived as beneficial for persons with intellectual disabilities. Improved continuity of care was of the reported benefits. Six barriers for the future implementation of the CHAP were identified including the time required to complete the CHAP, and the perceived lack of physicians’ willingness to do comprehensive assessments. Conclusion The future implementation of the CHAP was strongly supported. For its successful implementation, training of healthcare professionals and support staff and change in regulations and policies were recommended. [ABSTRACT FROM AUTHOR]

Background Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. Methods Narrative research methods underpinned by intersectionality theory were used to explore the lives of eight mothers with intellectual disability from various ethnocultural communities in Canada. A total of 33 in-depth interviews were conducted with these eight women over a period of 2 years. Results The lives of the women who took part in this study were marked by violence. The women resisted. Their resistance strategies addressed two kinds of relationships: their relationships with others and their relationship with themselves. Conclusion The women in this study employed strategies of resistance, sometimes at great personal cost, to provide their children with a better life. [ABSTRACT FROM AUTHOR]

Background Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method Forty-five Special Olympics Canada coaches participated in structured telephone interviews investigating actual and ideal sources of coaching knowledge. Coaching knowledge was categorized across the dimensions of competition, organization and training. Results Coaches primarily learned by doing and by consulting with coaching peers. Information about ideal sources of coaching knowledge demonstrates that coaches would value structured coaching courses, learning from mentors and from administrative support, in addition to learning on their own and from peers. Discussion Results suggest that a broader approach to education should be incorporated into coaching athletes with intellectual disabilities. Recommendations for achieving such goals are provided. [ABSTRACT FROM AUTHOR]

Background Accurate measurement of adaptive behaviour is important in both clinical and research contexts. While several good clinical measures exist, as well as brief research measures for adults with intellectual disability, there is need for a brief and efficient measure for research with children and youth. We present preliminary psychometric properties of a new scale we developed for such purposes, the GO4 KIDDS Brief Adaptive Behaviour Scale. Materials and Methods A large sample ( n = 432) of parents of youth (aged 3-20) with intellectual disability and/or ASD completed an online survey that included the new scale. A subsample of these parents ( n = 204) also completed the Scales of Independent Behavior- Revised Short Form (Scales of Independent Behavior-Revised Comprehensive Manual, 1996 and Riverside Publishing). Results The new scale has good internal consistency and correlates strongly with the Scales of Independent Behavior, thus supporting its reliability and validity. Conclusions Although we do not recommend its use for clinical purposes, the GO4 KIDDS Brief Adaptive Behaviour Scale may be useful for survey research with parents of children and youth with developmental disabilities. [ABSTRACT FROM AUTHOR]

There is an increasing interest in the notion of health disparities, inequities and inequalities in Canada and elsewhere. In Canada, individuals with disabilities represent one of six groups identified as particularly vulnerable to health disparities.This paper combines the literature related to the concepts of inequity and inequality with the body of knowledge on health disparities faced by individuals with intellectual disabilities.The value of distinguishing inequity from inequality, particularly as it relates to the experience of individuals with intellectual disabilities, is highlighted.A framework for the study of health inequities based on intellectual impairment is proposed. [ABSTRACT FROM AUTHOR]

Background: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. Method: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. Results: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. Conclusions: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.

Background: The COVID‐19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic‐related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The current study examined the associations among COVID‐19 stressors, thriving, and mental health problems among youth and adults with intellectual and developmental disabilities. Method: Caregivers of 159 people with intellectual and developmental disabilities between 12 and 35 years of age from Canada completed an online questionnaire. Results: A mediation analysis revealed that COVID‐19 stressors were positively associated with mental health problems, and that thriving partially mediated this association. Conclusion: Our findings suggest that experiences of thriving may be an important target for mental health support for people with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Background: Although the Canadian Consensus Guidelines for Primary Care of Adults with Intellectual and Developmental Disabilities recommends conducting periodic health checks in primary care, uptake is lacking. This study seeks to understand factors influencing the conduct of periodic health checks and identify what needs to change to increase them. Method: Qualitative data from five stakeholder groups (adults with intellectual and developmental disabilities, primary care providers, administrative staff, family, disability support workers) was guided by the Behaviour Change Wheel and the Theoretical Domains Framework to identify barriers and 'what needs to change' to support periodic health checks. Results: Stakeholders (n = 41) voiced multiple barriers. A total of 31 common and 2 unique themes were identified plus 33 items 'needing to change'. Conclusion: Despite barriers, stakeholders saw merit in periodic health checks as a preventative and equitable healthcare offering for adults with intellectual and developmental disabilities. Results will inform future intervention development steps. [ABSTRACT FROM AUTHOR]

Background: Studies have reported unmet health needs in individuals with intellectual disability (ID). This study illustrated and analysed patterns of healthcare services utilization among people with intellectual disability and compared their use to that of the general population. Method: Participants (N = 791, aged 15-82) were mainly recruited through government-financed agencies specializing in services for people with intellectual disabilities in Québec, Canada. Comparisons were possible by using health administrative data. Results: Some services were more used by people with intellectual disability than the general population (general medicine, psychiatry, PSA blood tests), and others were accessed at significantly lower frequencies (optometry, physiotherapy, Pap tests). Similar rates were found for mammography, dentistry and psychology. Inequities were more salient for individuals who had more severe levels of intellectual disability. Conclusions: Our findings support that the population with intellectual disability would benefit from policies and practices aimed at enhancing the access to healthcare services.

Background Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health issues, according to caregivers’ perspectives. Method Focus groups were conducted with one group of unpaid caregivers (i.e. family members) and two groups of paid caregivers (i.e. staff from community agencies) from Ontario, Canada. Results Caregivers identified a number of issues centering on a lack of services, on respect, on knowledge and on expertise. Diagnostic overshadowing and overmedication were also prevalent concerns. Conclusions Input from caregivers points to deficiencies in the system that lead them to use the ED when other options have been exhausted. A number of recommendations can be implemented to improve the emergency psychiatric care of adults with ID in the ED. [ABSTRACT FROM AUTHOR]

Background Previous research on psychiatric and health disparities according to level of cognitive functioning has focused on adults within an American healthcare context. The current study compares children with and without cognitive and developmental delays in Quebec, Canada, using physician billing data from a longitudinal study of low-income, francophone families. Canada is an ideal context for studying medical billing data as its equal access healthcare system removes many socioeconomic biases. Methods A large sample ( n = 1050) of children is used to describe psychiatric and health disparities, as well as differences in Ambulatory Care Sensitive (ACS) conditions and primary healthcare, between children with ( n = 107) and without ( n = 943) diagnoses in their billing history indicative of delays. Results The findings demonstrated a relatively high level of psychiatric diagnoses for children with delays. However, no difference was found between children with and without delays in regard to emergency room visits and hospitalizations for ACS conditions and primary healthcare. Conclusions The findings suggest that, within a universal healthcare system, disparities in primary healthcare may not emerge until adulthood in individuals with delay status. [ABSTRACT FROM AUTHOR]