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.

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.

'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.

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.

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.

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.

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.

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.

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.

Choosing child and adolescent psychiatry: factors influencing medical students.

OBJECTIVE: To examine the factors influencing medical students to choose child and adolescent psychiatry as a career specialty. METHOD: Quantitative and qualitative methods were used. A web-based survey was distributed to child and adolescent psychiatrists at the University of Toronto. In-depth interviews were held with select child and adolescent psychiatrists as well as a focus group with psychiatry residents. Retrospective accounts of the factors that influenced their decision to choose psychiatry and/or child and adolescent psychiatry as a specialty were collected. RESULTS: Ninety-two percent of participants indicated that recruitment of child psychiatrists in Canada is a problem. The recent decision by the Royal College of Physicians and Surgeons to recognize child and adolescent psychiatry as a subspecialty and introduce an extra year of training was identified as a further challenge to recruitment efforts. Other deterrents included lower salary than other subspecialties, lack of exposure during training, stigma, and lack of interest in treating children. Recruitment into psychiatry was enhanced by good role modeling, early exposure in medical school, an interest in brain research, and career and lifestyle issues. CONCLUSIONS: A rebranding of the role and perception of psychiatry is needed to attract future psychiatrists. Early exposure to innovations in child and adolescent psychiatry and positive role models are critical in attracting medical students. Recruitment should begin in the first year of medical school and include an enriched paediatric curriculum.

OBJECTIF: Examiner les facteurs qui influencent le choix des étudiants en médecine d'une carrière de spécialité en psychiatrie de l'enfant et de l'adolescent. MÉTHODE: Des méthodes quantitatives et qualitatives ont été utilisées. Un sondage en ligne a été distribué aux pédopsychiatres de l'Université de Toronto. Des entrevues de fond ont été menées avec des pédopsychiatres sélectionnés ainsi qu'avec un groupe de discussion formé de résidents en psychiatrie. Des comptes rendus rétrospectifs des facteurs qui ont influencé leur décision de choisir la psychiatrie et/ou la psychiatrie de l'enfant et de l'adolescent comme spécialité ont été recueillis. RÉSULTATS: Quatre-vingt-douze pour cent des participants ont indiqué que le recrutement de pédopsychiatres au Canada est problématique. La décision récente du Collège royal des médecins et chirurgiens du Canada de reconnaître la pédopsychiatrie comme surspécialité et d'ajouter une autre année de formation a été identifiée comme étant un défi additionnel pour les initiatives de recrutement. D'autres éléments dissuasifs étaient notamment le salaire plus faible que celui des autres surspécialités, l'absence d'exposition durant la formation, les stigmates, et le manque d'intérêt à traiter des enfants. Le recrutement en psychiatrie bénéficiait de bons modèles de rôle, d'une exposition précoce à la faculté de médecine, d'un intérêt pour la recherche sur le cerveau, et d'enjeux de carrière et de mode de vie. CONCLUSIONS: Il faut redonner une nouvelle image du rôle et de la perception de la psychiatrie pour attirer de futurs psychiatres. L'exposition précoce aux innovations de la pédopsychiatrie et aux modèles de rôle positifs est essentielle pour attirer les étudiants en médecine. Le recrutement devrait débuter en première année de la faculté de médecine et comprendre un programme d'études enrichi.

Attracting Child Psychiatrists to a Televideo Consultation Service: The TeleLink Experience.

Objective. Identify aspects of psychiatry work that are rewarding, as well as those that are challenging, from the perspective of psychiatrists and residents participating in televideo consultation services. Method. A web-based survey was distributed to psychiatrists within the Division of Child Psychiatry at the University of Toronto. Also, semistructured interviews were conducted with six child psychiatrists providing services to a telepsychiatry program. Finally, a focus group interview was held with four psychiatry residents. Results. Child psychiatrists are very comfortable conducting assessments via televideo. Factors identified as being important in the decision to participate in telepsychiatry include assisting underserved communities, supportive administrative staff, enhanced rural provider capacity, financial incentives, and convenience. The study's qualitative phase identified four themes in the decision to participate in telepsychiatry: (1) organizational, (2) shared values, (3) innovation, and (4) the consultation model. Conclusion. The success of televideo consultation programs in attracting child psychiatrists to provide consultation services to underresourced communities makes an important contribution to psychiatric workforce shortages. Understanding what aspects of telepsychiatry are most appreciated by consulting psychiatrists and residents offers useful strategies to telepsychiatry administrators and medical school educators seeking to attract, train, and retain psychiatry practitioners.

Reflections of young people who have had a first episode of psychosis: what attracted them to use alcohol and illicit drugs?

AIM: To identify factors that contribute to the initiation of alcohol and street drug use from the perspective of people who were enrolled in early intervention programmes for a first episode of psychosis. METHOD: Eight focus groups were conducted involving an average of four to six participants per group, with each group consisting of young people who met provincial inclusion criteria for early intervention programmes. Thematic analysis was used to systematically code transcripts from the focus groups for concepts, patterns and themes related to early use of illicit substances. RESULTS: Participants included 45 young people diagnosed with affective psychosis or non-affective spectrum disorders. Seventy-three percent were male, with a median age of 23 years. In general, substance use was an important topic that emerged across all focus groups. Participants talked about three main factors attracting them to initiate use of substances, most predominantly cannabis: (i) using within a social context; (ii) using as a self-medication strategy; and (iii) using to alter their perceptions. CONCLUSIONS: The need for social relationships, coping strategies and pleasurable experiences appear to be important reasons for initiating substance use. Additional research is needed to identify whether prodromal youth report the same factors that attract them to initiate use in order to develop more effective prevention strategies.

Youth at ultra high risk for psychosis: using the Revised Network Episode Model to examine pathways to mental health care.

AIM: This paper aims to identify the ways in which youth at ultra high risk for psychosis access mental health services and the factors that advance or delay help seeking, using the Revised Network Episode Model (REV NEM) of mental health care. METHODS: A case study approach documents help-seeking pathways, encompassing two qualitative interviews with 10 young people and 29 significant others. Theoretical propositions derived from the REV NEM are explored, consisting of the content, structure and function of the: (i) family; (ii) community and school; and (iii) treatment system. RESULTS: Although the aspects of the REV NEM are supported and shape pathways to care, we consider rethinking the model for help seeking with youth at ultra high risk for psychosis. CONCLUSIONS: The pathway concept is important to our understanding of how services and supports are received and experienced over time. Understanding this process and the strategies that support positive early intervention on the part of youth and significant others is critical.

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.

Child and youth telepsychiatry in rural and remote primary care.

Young people with psychological or psychiatric problems are managed largely by primary care practitioners, many of whom feel inadequately trained, ill equipped, and uncomfortable with this responsibility. Accessing specialist pediatric and psychological services, often located in and near large urban centers, is a particular challenge for rural and remote communities. Live interactive videoconferencing technology (telepsychiatry) presents innovative opportunities to bridge these service gaps. The TeleLink Mental Health Program at The Hospital for Sick Children in Toronto offers a comprehensive, collaborative model of enhancing local community systems of care in rural and remote Ontario using videoconferencing. With a focus on clinical consultation, collaborative care, education and training, evaluation, and research, ready access to pediatric psychiatrists and other specialist mental health service providers can effectively extend the boundaries of the medical home. Medical trainees in urban teaching centers are also expanding their knowledge of and comfort level with rural mental health issues, various complementary service models, and the potentials of videoconferencing in providing psychiatric and psychological services. Committed and enthusiastic champions, a positive attitude, creativity, and flexibility are a few of the necessary attributes ensuring viability and integration of telemental health programs.

A descriptive review of qualitative studies in first episode psychosis.

AIM: The aim of this paper is to provide a descriptive review of published qualitative research studies on first episode psychosis (FEP). METHODS: A review was undertaken to describe the findings of qualitative studies in early psychosis. Keyword searches in Medline, CINAHL, ASSIA, PsychINFO databases, as well as manual searches of other relevant journals and reference lists of primary papers, were conducted. RESULTS: Thirty-one qualitative papers (representing 27 discrete studies) were identified. The majority reported research concerning young people based in community settings. The research studies were organized according to the following generic social processes: (i) achieving identity; (ii) acquiring perspectives; (iii) doing activity; and, (iv) experiencing relationships. The papers reviewed are based on first-person accounts obtained from individuals who have experienced FEP, their family members and service providers. CONCLUSION: This descriptive review contributes to our understanding of the complex social processes of achieving identity, acquiring perspectives, doing activities and developing relationships as experienced by young people and the significant others in their world. The cumulative findings highlight the contextually rich and detailed information made possible through qualitative studies of FEP. They begin to account for the active engagement of individuals affected by psychosis in making sense of their experience and suggest that this experience should be understood from within young people's own framework of meaning.

A qualitative study of young people's perspectives on receiving psychiatric services via televideo.

OBJECTIVE: It is critical to consult young people about their experiences. This study addresses the paucity of research on the perspective of young people in general, and in paediatric telepsychiatry specifically. The goal is to understand the experience of young people receiving telepsychiatry. METHOD: Interpretive interactionism (Denzin, 1989) was used to interview 30 young people; immediately following the consultation and four to six weeks later. Analysis occurred via a series of steps in keeping with the interpretive interactionist framework. RESULTS: Four themes arose repeatedly: the encounter with the psychiatrist and experience of having others in the room; the helpfulness of the session; a sense of personal choice during the consultation; and, the technology. Participants highlighted the importance of their relationship with the psychiatrist. Participant's narratives were replete with examples of ways that they actively took responsibility and exerted control within the session itself. CONCLUSION: Young people have a significant role to play in their own care. It is critical that telepsychiatry recommendations be explained and opportunities for young people to express their concerns and discuss alternatives are provided. Further efforts to include young people may include ensuring offering alternate treatments and/or negotiated when recommended treatments are unacceptable and/or resisted.