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Mindfulness-based approaches have been shown to be effective in improving the mental health of parents of youth and adults with autism and other developmental disabilities, but prior work suggests that geography and caregiving demands can make in-person attendance challenging. The purpose of this study was to evaluate the feasibility, acceptability and preliminary outcomes of a mindfulness-based group intervention delivered to parents virtually. It was feasible to deliver this manualized intervention. Twenty-one of 39 parents completed the intervention and completers reported high satisfaction ratings. Parents reported reduced levels of distress, maintained at 3-month follow-up, and increased mindfulness. Changes reported following intervention were similar to changes reported in a prior study of parents competing an in person mindfulness group.

Background: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. Methods: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. Results: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two-year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender-specific screening for the three types of cancer studied (colorectal, breast and cervical). Conclusions: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted.

Background: Effective cancer screening must be available for all eligible individuals without discrimination. Lower rates of cervical and breast cancer screening have been reported in certain groups compared with women from the general population, such as women with intellectual and developmental disabilities (IDD). Research on the factors explaining those observed differences is crucial to determine whether practices are unfair and could be improved. The aim of this population-based study was to describe cancer screening utilisation by women with IDD in Ontario, Canada compared with other women in Ontario. The specific objectives were (1) to estimate the rates of cervical and breast cancer screening among eligible women with IDD in Ontario; (2) to compare the rates of cervical and breast cancer screening between eligible women with and without IDD; and (3) to examine if any observed differences between women with and without IDD persist after factors such as age, socio-economic status, rurality and healthcare utilisation are accounted for. Method: This study draws women with IDD from an entire population, and draws a randomly selected comparison group from the same population. It controls for important confounders in cancer screening within the limitations of the data sources. The study was conducted using health administrative databases and registries in Ontario, Canada. Two cohorts were created: a cohort of all women identified as having an IDD and a cohort consisting of a random sample of 20% of the women without IDD. Results: The proportion of women with IDD who are not screened for cervical cancer is nearly twice what it is in the women without IDD, and 1.5 times what it is for mammography. Conclusions: Findings suggest that women with IDD experience inequities in their access to cancer screening. Public health interventions targeting this population should be implemented. (Contains 3 tables.)

Background: Individuals with intellectual and developmental disabilities (IDD) experience high rates of physical and mental health problems; yet their health care is often inadequate. Information about their characteristics and health services needs is critical for planning efficient and equitable services. A logical source of such information is administrative health data; however, it can be difficult to identify cases with IDD in these data. The purpose of this study is to evaluate three algorithms for case finding of IDD in health administrative data. Methods: The three algorithms were created following existing approaches in the literature which ranged between maximising sensitivity versus balancing sensitivity and specificity. The "broad" algorithm required only one IDD service contact across all available data and time periods, the "intermediate" algorithm added the restriction of a minimum of two physician visits while the "narrow" algorithm added a further restriction that the time period be limited to 2006 onward. The resulting three cohorts were compared according to socio-demographic and clinical characteristics. Comparisons on different subgroups for a hypothetical population of 50,000 individuals with IDD were also carried out: this information may be relevant for planning specialised treatment or support programmes. Results: The prevalence rates of IDD per 100 were 0.80, 0.52 and 0.18 for the "broad", "intermediate" and "narrow" algorithms, respectively. Except for "percentage with psychiatric co-morbidity", the three cohorts had similar characteristics (standardised differences less than 0.1). More stringent thresholds increased the percentage of psychiatric comorbidity and decreased the percentages of women and urban residents in the identified cohorts (standardised differences = 0.12 to 0.46). More concretely, using the narrow algorithm to indirectly estimate the number of individuals with IDD, a practice not uncommon in planning and policy development, classified nearly 7000 more individuals with psychiatric co-morbidities than using the intermediate algorithm. Conclusions: The prevalence rate produced by the intermediate algorithm most closely approximated the reported literature rate suggesting the value of imposing a two-physician visit minimum but not restricting the time period covered. While the statistical differences among the algorithms were generally minor, differences in the numbers of individuals in specific population subgroups may be important particularly if they have specific service needs. Health administrative data can be useful for broad based service planning for individuals with IDD and for population level comparisons around their access and quality of care. (Contains 4 tables and 1 figure.)

Background: Studies have shown that staff who support adults with intellectual disabilities (ID) are exposed to challenging behaviour in their work including client aggression. Exposure to aggressive behaviour has been associated with staff stress and burnout. Study samples have been small however, and there has been very little data exploring this issue among North American staff. Methods: A cross-sectional survey which included demographics, measures of frequency and severity (including perceived severity and a standardised severity score) of exposure to client aggression and the Maslach Burnout Inventory-Human Services Survey (MBI-HSS) was completed by 926 community staff who support adults with ID in Ontario, Canada. Relationships between demographic variables and exposure to aggression were examined with descriptive statistics. Pearson correlations were used to analyse exposure variables and MBI-HSS scores. Results: Nearly all staff reported being exposed to client aggression in the prior 6 months. Mean MBI-HSS scores were comparable to previously published data in similar populations with the exception of a higher score in the personal accomplishment domain. All measures of exposure to aggression were significantly positively correlated with MBI-HSS scores in the emotional exhaustion and depersonalisation dimensions of burnout. Conclusions: The prevalence of burnout in this North American sample is comparable to what has been reported in similar populations in other locations, although these staff may have a higher sense of accomplishment with regard to their work. Findings from this large sample support the evidence that exposure to client aggression affects staff emotional well-being but is by no means the only important factor. Further study is needed to explore the differences and similarities reported here as well as other contributing factors which will guide the implementation of effective strategies to improve staff well-being. (Contains 2 tables.)

Background: Stressful life events have been linked to psychopathology in the general population, but few studies have considered the relationship between life events and psychopathology for people with intellectual disabilities (ID), and the link between particular life events and hospital use. Methods: Informants provided data on 746 adults with ID who had experienced at least one "crisis". Informants completed a checklist of recent life events from the Psychiatric Assessment for Adults with Developmental Disabilities Checklist (PAS ADD checklist) and also indicated whether the crisis resulted in a visit to the hospital emergency department. Results: Individuals experiencing life events in the past year were more likely to visit the emergency department in response to crisis than those who did not experience any life events. Individuals experiencing a move of house or residence, serious problem with family, friend or caregiver, problems with police or other authority, unemployed for more than 1 month, recent trauma/abuse, or a drug or alcohol problem were more likely to visit the emergency department. Conclusions: Six specific life events were found to be associated with use of emergency departments in response to crisis. We suggest intervention efforts be targeted towards people who experience life events, particularly these events, as they may be a risk factor for hospital visits.

Background: This study compares outpatients with intellectual disability (ID) receiving specialised services to outpatients with ID receiving general services in Ontario's tertiary mental healthcare system in terms of demographics, symptom profile, strengths and resources, and clinical service needs. Methods: A secondary analysis of Colorado Client Assessment Record data collected from all tertiary psychiatric hospitals in the province was completed for a stratified random sample of 246 outpatients identified as having ID, from both specialised and general programmes. Results: Individuals with ID in specialised programmes differed from patients with ID in general programmes with regard to demographics, diagnostic profile, symptom presentation and recommended level of care. Conclusions: Further research is required to determine why individuals access some services over others and to evaluate whether specialised services are more appropriate for certain subgroups with ID than others.

Background: Limitations of general psychiatric services have led to the development of specialised psychiatric programmes for patients with intellectual disability (ID) and mental health needs. Few studies have examined treatment outcomes of specialised inpatient units, and no studies have explored how the effects of intervention may differ for individuals at varying levels of cognitive ability. The present study examined clinical outcomes of inpatients with mild ID in contrast to inpatients with moderate to severe ID within the same service. Method: Thirty-three patients (17 with mild ID and 16 with moderate to severe ID) discharged between 2006 and 2008 from a specialised inpatient unit in Canada for adults with ID and mental illness were studied. In addition to examining change in scores on clinical measures, outcomes with regard to length of stay, diagnostic change, residential change and re-admission to hospital were explored. Results: Both groups demonstrated clinical improvement from admission to discharge. However, only patients with mild ID demonstrated improvements on the Global Assessment of Functioning. Conclusions: This study is one of the first to consider outcomes of higher and lower functioning individuals with ID on a specialised inpatient unit. Results suggest that outcomes may be different for these groups, and some clinical measures may be more sensitive to changes in patients with more severe disabilities.

The current study describes and compares profiles of patients in the same specialized hospital program for patients with intellectual disability with and without forensic involvement. A retrospective chart review of 78 individuals (39 forensic and 39 non-forensic) served between 2006 and 2008 was completed. The forensic sample was more likely to have a diagnosis of borderline to mild IQ and psychotic disorder was more common. Forensic patients were also more likely to have previously used drugs or alcohol. Forensic inpatients had significantly longer lengths of stay, and were more likely to change residence from admission to discharge than the non-forensic inpatients but the GAF scores did not differ between the two groups at admission or discharge. Although there are many similarities between the two groups, there are also some important differences that exist which should be considered in the design of inpatient and outpatient mental health and intellectual disability services. (Contains 2 tables.)

Background: Over the years, the closure of institutions has meant that individuals with intellectual disabilities (IDs) must access mainstream (i.e. general) mental health services. However, concern that general services may not adequately meet the needs of patients with ID and mental illness has led to the development and implementation of more specialised programmes. This study compares patients with ID receiving specialised services to patients with ID receiving general services in Ontario's tertiary mental healthcare system in terms of demographics, symptom profile, strengths and resources and clinical service needs. Method: A secondary analysis of Colorado Client Assessment Record data collected from all tertiary psychiatric hospitals in the province was completed for all 371 inpatients with ID, from both specialised and general programmes. Results: Inpatients in specialised programmes were more likely to have a diagnosis of mood disorder and were less likely to have a substance abuse or psychotic disorder. Individuals receiving specialised services had higher ratings of challenging behaviour than those in more general programmes. The two groups did not differ significantly in terms of recommended level of care, although more inpatients from specialised programmes were rated as requiring Level 4 care than inpatients from general programmes. Conclusions: In Ontario, inpatients in specialised and general programmes have similar overall levels of need but unique clinical profiles that should be taken into consideration when designing interventions for them.

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.

This paper will argue that suicidal ideation and suicidal gestures are evident in adults with mental retardation, including individuals not receiving mental health services currently, and that psychosocial correlates of suicidality are similar to those noted in the general population. Findings are based on structured interviews with 98 adults with mental retardation, with corroborative information from caregivers and clinical charts. One in three individuals reported that they think ''life is not worth living'' sometimes or a lot. Eleven percent of individuals reported previous suicide attempt(s). Twenty-three percent of informants were unaware of the current suicidal ideation that their family member/client was reporting. Individuals reporting suicidal ideation endorsed more loneliness, stress, anxiety and depression, along with less social support than other individuals, consistent with reports of suicidal individuals in the general population. Adults with mental retardation who report thinking that life is not worth living should be a target group for future suicide prevention efforts. More research is needed to better understand the risk factors and protective factors for suicidality in this population.

Background: The COVID‐19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID‐19 pandemic. Methods: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID‐19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. Results: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID‐19 pandemic and are concerned about the health and well‐being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self‐care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID‐19 pandemic. Conclusions: Siblings are providing key support to their brother or sister with IDD during the COVID‐19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers. [ABSTRACT FROM AUTHOR]

Objective: While it is generally accepted that adults with intellectual and developmental disabilities (IDDs) use health services to a greater extent than the general population, there is remarkably little research that focuses on the costs associated with their health care. Using population‐based data from adults with IDD in Ontario, this study aimed to estimate overall health care costs, classify individuals into high and non‐high cost categories and describe differences in the demographics, clinical profiles and health care use patterns between these groups. Design A retrospective cohort study based in Ontario, Canada, was conducted with the use of linked administrative health data. Methods: A costing algorithm developed for the general population in Ontario was applied to estimate health care costs of adults with IDD under age 65 for 2009 and 2010. Individuals were categorised into two groups according to whether their total annual health care costs were among the highest decile in the general population. These groups were compared on demographic and clinical variables, and relative mean costs for six types of health care services in the two groups were computed. In addition, we computed the proportion of individuals who remained in the high cost group over 2 years. Results: Among adults with IDD, 36% had annual health care expenditures greater than $2610 CAD (top decile of all Ontario adults under 65). These individuals were more likely to be female, to be in the oldest age groups, to live in group homes and to be receiving disability income support than individuals whose expenditures were below the high cost threshold. In addition, they had higher rates of all the physical and mental health conditions studied. Greatest health care expenses were due to hospitalisations, especially psychiatric hospitalisations, continuing care/rehabilitation costs and medication costs. The majority of individuals whose health care costs placed them in the high cost category in 2009 remained in that category a year later. Discussion: Adults with IDD are nearly 4 times as likely to incur high annual health care costs than those without IDD. Individuals with IDD and high health care costs have unique health and demographic profiles compared with adults with IDD whose annual health care costs are below the high cost threshold. Attending to their health care needs earlier in their health care trajectory may be an opportunity to improve health and reduce overall health care costs. It is important that we explore how to best meet their needs. Models proposed to meet the needs of adults with high health care costs in the general population may not apply to this unique group. [ABSTRACT FROM AUTHOR]