Intellectual and developmental disabilities in Ontario's criminal justice and forensic mental health systems: Using data to tell the story.

BACKGROUND: International studies show that adults with intellectual and developmental disabilities (IDD) are disproportionately represented in the criminal justice and forensic mental health systems; however, it is difficult to capture their involvement across systems in any one jurisdiction. AIMS: The current study aimed to estimate the prevalence of IDD across different parts of the criminal justice and forensic mental health systems in Ontario and to describe the demographic and clinical profiles of these individuals relative to their counterparts without IDD. METHODS: This project utilised administrative data to identify and describe the demographic and clinical characteristics of adults with IDD and criminal justice or forensic involvement across four sectors: federal correctional facilities, provincial correctional facilities, forensic inpatient mental health care and community mental health programmes. Questions were driven by and results were contextualised by a project advisory group and people with lived experience from the different sectors studied, resulting in a series of recommendations. RESULTS: Adults with IDD were over-represented in each of the four settings, ranging from 2.1% in federal corrections to 16.7% in forensic inpatient care. Between 20% (forensic inpatient) and 38.4% (provincial corrections) were under the age of 25 and between 34.5% (forensic inpatient) and 41.8% (provincial corrections) resided in the lowest income neighbourhoods. Medical complexity and rates of co-occurring mental health conditions were higher for people with IDD than those without IDD in federal and provincial corrections. CONCLUSIONS: Establishing a population-based understanding of people with IDD within these sectors is an essential first step towards understanding and addressing service and care needs. Building on the perspectives of people who work in and use these systems, this paper concludes with intervention recommendations before, during and after justice involvement.

"Everything has changed since COVID": Ongoing challenges faced by Canadian adults with intellectual disabilities during waves 2 and 3 of the COVID-19 pandemic.

The COVID-19 pandemic has disrupted the lives of people with intellectual disabilities in many ways, impacting their health and wellbeing. Early in the pandemic, the research team delivered a six-week virtual group-based program to help Canadian adults with intellectual disabilities cope and better manage their mental health. The study's objective was to explore ongoing concerns among individuals with intellectual disabilities following their participation in this education and support program. Thematic analysis was used to analyze participant feedback provided eight weeks after course completion. Twenty-four participants were interviewed in January 2021 and May 2021 across two cycles of the course. Three themes emerged: 1) employment and financial challenges; 2) navigating changes and ongoing restrictions; and 3) vaccine anticipation and experience. These findings suggest that despite benefiting from the program, participants continued to experience pandemic-related challenges in 2021, emphasising the need to continually engage people with intellectual disabilities.

The impact of a virtual wellness course for adults with intellectual and developmental disabilities in the third year of COVID-19.

The current study examines how a virtual wellness intervention may improve health outcomes in adults with intellectual and developmental disabilities. Thirty-six adults with intellectual and developmental disabilities participated in the wellness intervention. Outcome measures related to satisfaction, mental health, wellbeing, health behaviours and overall health were completed at three time points (pre, post and follow-up). Participants reported high levels of satisfaction and had significant improvements in outcomes related to mental health and wellbeing. Changes in sleep, sedentary behaviour and overall health were not reported, though qualitative evidence suggests that some changes were implemented. The study provides evidence to support the use of virtual interventions to address health concerns in individuals with intellectual and developmental disabilities.

Amenable deaths among adults with intellectual and developmental disabilities including Down syndrome: An Ontario population-based cohort study.

BACKGROUND: Rates of death and avoidable deaths are reportedly higher among people with intellectual and developmental disabilities. This study contributes to our understanding of how mortality and intellectual and development disabilities are associated. METHOD: General population and intellectual and developmental disabilities adult cohorts were defined using linked administrative data. All-cause and amenable deaths between 2010 and 2015 were reported for these cohorts and subcohorts with and without Down syndrome. Cox proportional hazards models evaluated the impact of potential contributors to amenable deaths. RESULTS: Adults with intellectual and developmental disabilities had higher all-cause (6.1 vs. 1.6%) and amenable death percentages (21.4 vs. 14.1%) than general population comparators. Within intellectual and developmental disabilities, those with Down syndrome had higher all-cause (12.0 vs. 6.0%) but lower amenable death percentages (19.2 vs. 21.8%) than those without. CONCLUSIONS: Results suggest that interventions to reduce amenable deaths target provider-care-recipient interactions and coordination across care and support sectors.

The Nuts and Bolts of Health Care: Evaluating an initiative to build direct support professional capacity to support the health care of individuals with intellectual disabilities.

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.

Intellectual/developmental disabilities among people incarcerated in federal correctional facilities in Ontario, Canada: Examining prevalence, health and correctional characteristics.

BACKGROUND: There is little research with people who experience intellectual/developmental disabilities and imprisonment. METHODS: The study linked health and correctional data to examine prevalence of intellectual/developmental disabilities and health and correctional characteristics among adults experiencing their first federal incarceration between 1 January 2002 and 31 December 2011 (n = 9278) and two non-incarcerated groups (n = 10,086,802). RESULTS: The prevalence of intellectual/developmental disabilities was 2.1% in the incarcerated group and 0.9% in the non-incarcerated group. Before incarceration, those with, versus without, intellectual/developmental disabilities were at greater risk of traumatic brain injury, mental illness, and substance use disorders. While incarcerated, those with intellectual/developmental disabilities were more likely to incur serious institutional disciplinary charges. Post-incarceration, persons with intellectual/developmental disabilities were at greater risk of emergency department visits, and psychiatric and acute hospitalizations, than the non-incarcerated groups. CONCLUSIONS: People with intellectual/developmental disabilities are overrepresented in Canadian federal correctional institutions. The authors offer strategies to support people prior to, during, and post-incarceration.

'More together than apart': The evaluation of a virtual course to improve mental health and well-being of adults with intellectual disabilities during the COVID-19 pandemic.

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.

Looking across health and healthcare outcomes for people with intellectual and developmental disabilities and psychiatric disorders: population-based longitudinal study.

BACKGROUND: Intellectual and developmental disabilities (IDDs) and psychiatric disorders frequently co-occur. Although each has been associated with negative outcomes, their combined effect has rarely been studied. AIMS: To examine the likelihood of five negative health and healthcare outcomes for adults with IDD and mental health/addiction disorders (MHAs), both separately and together. For each outcome, demographic, clinical and system-level factors were also examined. METHOD: Linked administrative data-sets were used to identify adults in Ontario, Canada, with IDD and MHA (n = 29 476), IDD-only (n = 35 223) and MHA-only (n = 727 591). Five outcomes (30-day readmission, 30-day repeat ED visit, delayed discharge, long-term care admission and premature mortality) were examined by logistic regression models with generalised estimating equation or survival analyses. For each outcome, crude (disorder groups only) and complete (adding biosocial covariates) models were run using a general population reference group. RESULTS: The IDD and MHA group had the highest proportions across outcomes for both crude and complete models. They had the highest adjusted ratios for readmissions (aOR 1.93, 95%CI 1.88-1.99), repeat ED visit (aOR 2.00, 95%CI 1.98-2.02) and long-term care admission (aHR 12.19, 95%CI 10.84-13.71). For delayed discharge, the IDD and MHA and IDD-only groups had similar results (aOR 2.00 (95%CI 1.90-2.11) and 2.21 (95%CI 2.07-2.36). For premature mortality, the adjusted ratios were similar for all groups. CONCLUSIONS: Poorer outcomes for adults with IDD, particularly those with MHA, suggest a need for a comprehensive, system-wide approach spanning health, disability and social support.

The prevalence and health status of people with developmental disabilities in provincial prisons in Ontario, Canada: A retrospective cohort study.

BACKGROUND: Data on the prevalence of developmental disabilities in people who experience imprisonment and on their characteristics are lacking. METHODS: The present authors identified adults with developmental disabilities who were released from Ontario provincial prisons in 2010 and a general population comparator group using administrative data. The present authors examined demographic characteristics, morbidity and healthcare use. RESULTS: The prevalence of developmental disabilities was 2.2% in the prison group (N = 52,302) and 0.7% in the general population (N = 10,466,847). The prevalence of psychotic illness, substance-related disorder and self-harm was higher among people in the prison group with developmental disabilities. People with developmental disabilities were more likely to have emergency department visits and hospitalizations in prison and in the year after release. CONCLUSIONS: People with developmental disabilities are overrepresented in provincial prisons and have a high burden of disease. Strategies are indicated to prevent incarceration and to improve health.

The Mental Health of Adults with Developmental Disabilities in Ontario: Lessons from Administrative Health Data.

Adults with developmental disabilities have increased rates of mental illness and addiction, in addition to being more likely to experience physical health issues. This can lead to high rates of hospital and community-based healthcare. Population-based administrative health data can help in identifying the extent of problems experienced and target areas for policy and practice changes.

Exploring stimulant treatment in ADHD: narratives of young adolescents and their parents.

BACKGROUND: Young adolescents' and their parents' experiences with Attention-Deficit/Hyperactivity Disorder (ADHD) and its treatment were explored to investigate beliefs and attitudes regarding use of stimulant medication, and their influence on treatment decisions. METHODS: Using in-depth qualitative interviews, 12 adolescents with ADHD aged 12 - 15 years, and their parents described their experiences of ADHD and its treatment. Twenty four interviews, 12 with adolescents and 12 with their parents elicited detailed descriptions of beliefs about ADHD, attitudes about stimulant use and the circumstances surrounding treatment decisions. Verbatim transcripts were iteratively analyzed by a team of researchers following an interpretive interactionist framework. RESULTS: Young people offered three themes describing ADHD: 1) personality trait, 2) physical condition or disorder, and 3) minor issue or concern. Regarding medication use, youth described 1) benefits, 2) changes in sense of self, 3) adverse effects, and 4) desire to discontinue use. Parents' beliefs were more homogeneous than youth beliefs, describing ADHD as a disorder requiring treatment. Most parents noted benefits from stimulant use. Themes were 1) medication as a last resort, 2) allowing the child to reach his or her potential; and 3) concerns about adverse and long-term effects. Families described how responsibility for treatment decisions is transferred from parent to adolescent over time. CONCLUSIONS: Young adolescents can have different beliefs about ADHD and attitudes about medication use from their parents. These beliefs and attitudes influence treatment adherence. Incorporating input from young adolescents when making clinical decisions could potentially improve continuity of treatment for youth with ADHD.

Addressing Delayed Hospital Discharges for Patients With Intellectual and Developmental Disabilities and a Mental Illness.

Adults with intellectual and developmental disabilities (IDD) who also have a co-occurring mental illness are almost five times as likely to experience a delayed hospital discharge as adults with mental illness only. Such delays occur when a patient no longer requires hospital-level care but cannot be discharged, often because of a lack of appropriate postdischarge settings. Delayed discharges contribute to poor patient outcomes, increased system costs, and delayed access to care. Recently, practice guidance was developed in Canada, identifying 10 components of successful transitions for this population. Core to this guidance is a patient-centered, cross-sectoral approach, including the patient, family, hospital team, community health care providers, and IDD providers.

Bridging the gap: national virtual education programme for professionals caring for adults with intellectual and developmental disabilities at the time of COVID-19.

BACKGROUND: The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes. AIM: The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes - Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19. METHOD: The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts' hub. Pre-, post- and follow-up evaluation data were collected. RESULTS: Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001). CONCLUSION: Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Transforming Child and Youth Mental Health Care via Innovative Technological Solutions.

Live interactive videoconferencing and other technologies offer innovative opportunities for effective delivery of specialized child and adolescent mental health services. In this article, an example of a comprehensive telepsychiatry program is presented to highlight a variety of capacity-building initiatives that are responsive to community needs and cultures; these initiatives are allowing children, youth and caregivers to access otherwise-distant specialist services within their home communities. Committed, enthusiastic champions, adequate funding and infrastructure, creativity and a positive attitude represent key elements in the adaptation of this demonstrated user-friendly modality.

Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review.

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. We conducted a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, we conducted a second targeted search of the general care-giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care-giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care-giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care-giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.

Issues encountered in a qualitative secondary analysis of help-seeking in the prodrome to psychosis.

Primary data are rarely used explicitly as a source of data outside of the original research purpose for which they were collected. As a result, qualitative secondary analysis (QSA) has been described as an "invisible enterprise" for which there is a "notable silence" amongst the qualitative research community. In this paper, we report on the methodological implications of conducting a secondary analysis of qualitative data focusing on parents' narratives of help-seeking activities in the prodrome to psychosis. We review the literature on QSA, highlighting the main characteristics of the approach, and discuss issues and challenges encountered in conducting a secondary analysis. We conclude with some thoughts on the implications for conducting a QSA in children's mental health services and research.

A review of the outcomes of the recommendations made during paediatric telepsychiatry consultations.

Little is known about whether the recommendations made during telepsychiatry are actually implemented. We reviewed 100 telepsychiatry consultations, chosen randomly from a paediatric telepsychiatry programme serving rural communities in Ontario. Treatment recommendations had been made for each case reviewed and up to nine recommendations had been made for a single case. Twenty-seven percent of recommendations revolved around monitoring (10%), changing (9%), starting (4%), continuing (3%) and stopping (1%) medication. Case managers associated with 54 of the cases were interviewed to determine whether the recommendations had been implemented and to examine the barriers and facilitators to implementation. The results indicated that cooperation of both child and parent, clear communication of recommendations, involvement of the school and local health providers, stability of the agencies and availability of services were key components in the successful implementation of recommendations. The matter of technology or technological difficulties acting as a barrier to telepsychiatric consultations was not mentioned by case managers, suggesting that it was not a problem.

Barriers and facilitators to implementing family support and education in Early Psychosis Intervention programmes: A systematic review.

Family support is a core component of the Early Psychosis Intervention (EPI) model, yet it continues to have relatively low rates of implementation in practice. This paper reports results of a literature review on facilitators and barriers to delivering family interventions in EPI programmes. A search was conducted of 4 electronic databases, Medline, EMBASE, PsycINFO and Joanna Briggs, from 2000 to 2015 using terms related to early onset psychosis, family work and implementation. Four thousand four hundred and two unique studies were identified, 7 of which met inclusion criteria. Barriers and facilitators were coded and aggregated to higher-level themes using a consensus approach. Five of 7 studies examined structured multifamily psychoeducation. Uptake by families was affected by: family/client interest and readiness to participate; ability to access supports; and support needs/preferences. Implementation by programmes was affected by staff access to training and resources to provide family support. A key finding across the identified studies was that families have different needs and preferences regarding the timing, length, intensity and content of the intervention. One size does not fit all and many families do not require the intensive psychoeducational programmes typically provided. The reviewed literature suggests that flexible, tiered approaches to care may better meet family needs and increase rates of uptake of family support. However, more research is needed on the effectiveness of different models of family support in early psychosis and how they can be successfully implemented.

Family perspectives on pathways to mental health care for children and youth in rural communities.

CONTEXT: There is insufficient literature documenting the mental health experiences and needs of rural communities, and a lack of focus on children in particular. This is of concern given that up to 20% of children and youth suffer from a diagnosable mental health problem. PURPOSE: This study examines issues of access to mental health care for children and youth in rural communities from the family perspective. METHODS: In-depth interviews were conducted in rural Ontario, Canada, with 30 parents of children aged 3-17 who had been diagnosed with emotional and behavioral disorders. FINDINGS: Interview data indicate 3 overall thematic areas that describe the main barriers and facilitators to care. These include personal, systemic, and environmental factors. Family members are constantly negotiating ongoing tension, struggle, and contradiction vis-à-vis their attempts to access and provide mental health care. Most factors identified as barriers are also, under different circumstances, facilitators. Analysis clustered around the contrasts, contradictions, and paradoxes present throughout the interviews. CONCLUSIONS: The route to mental health care for children in rural communities is complex, dynamic, and nonlinear, with multiple roadblocks. Although faced with multiple roadblocks, there are also several factors that help minimize these barriers.

Pediatric telepsychiatry in ontario: Caregiver and service provider perspectives.

Families in rural areas face significant geographic and economic obstacles to obtaining pediatric mental health services. Telepsychiatry promises the possibility of extending specialized expertise into areas that have no resident psychiatrists. In this study, user perspectives and experiences of a pediatric telepsychiatry program serving rural communities in Ontario, Canada, were explored. Qualitative, exploratory methods were utilized because of the complex nature of mental health services needs and provision in rural communities. Focus groups with rural mental health service providers and interviews with family caregivers of children receiving a telepsychiatry consultation were conducted. The purpose of this research was to evaluate the benefits and limitations of providing pediatric psychiatric services via video-technology to inform future program development and health policy. Whereas participants in the study indicated that their experiences with the telepsychiatry service had been positive, the need for additional local services to support treatment recommendations was emphasized.