The Disability-Related Education and Training Experiences of Perinatal Care Providers in Ontario.

We describe the disability-related education and training experiences of perinatal care providers in Ontario. Twenty perinatal care providers (e.g., obstetricians, midwives) participated in semi-structured interviews. Using a content analysis approach, we found most acquired disability-related training through their own initiative as opposed to education through professional training programs. Barriers to training included lack of data on disability and pregnancy and limited experiential learning opportunities. Providers recommended that future training focus on experiential learning and social determinants of health, with people with disabilities involved in developing and delivering training. These efforts are vital to optimize pregnancy outcomes for people with disabilities.

Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

AIM: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. DESIGN: A qualitative study with semi-structured interviews. METHODS: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. RESULTS: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. CONCLUSION: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. IMPACT: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. REPORTING METHOD: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

Geographic variation and sociodemographic correlates of prescription psychotropic drug use among children and youth in Ontario, Canada: a population-based study.

BACKGROUND: Population-based research examining geographic variability in psychotropic medication dispensing to children and youth and the sociodemographic correlates of such variation is lacking. Variation in psychotropic use could reflect disparities in access to non-pharmacologic interventions and identify potentially concerning use patterns. METHODS: We conducted a population-based study of all Ontario residents aged 0 to 24 years who were dispensed a benzodiazepine, stimulant, antipsychotic or antidepressant between January 1, 2018, and December 31, 2018. We conducted small-area variation analyses and identified determinants of dispensing using negative binomial generalized estimating equation models. RESULTS: The age- and sex-standardized rate of psychotropic dispensing to children and youth was 76.8 (range 41.7 to 144.4) prescriptions per 1000 population, with large variation in psychotropic dispensing across Ontario's census divisions. Males had higher antipsychotic [rate ratio (RR) 1.40; 95% confidence interval (CI) 1.36 to 1.44) and stimulant (RR 1.75; 95% CI 1.70 to 1.80) dispensing rates relative to females, with less use of benzodiazepines (RR 0.85; 95% CI 0.83 to 0.88) and antidepressants (RR 0.81; 95% CI 0.80 to 0.82). Lower antipsychotic dispensing was observed in the highest income neighbourhoods (RR 0.72; 95% CI 0.70 to 0.75) relative to the lowest. Benzodiazepine (RR 1.12; 95% CI 1.01 to 1.24) and stimulant (RR 1.11; 95% CI 1.01 to 1.23) dispensing increased with the density of mental health services in census divisions, whereas antipsychotic use decreased (RR 0.82; 95% CI 0.73 to 0.91). The regional density of child and adolescent psychiatrists and developmental pediatricians (RR 1.00; 95% CI 0.99 to 1.01) was not associated with psychotropic dispensing. CONCLUSION: We found significant variation in psychotropic dispensing among young Ontarians. Targeted investment in regions with long wait times for publicly-funded non-pharmacological interventions and novel collaborative service models may minimize variability and promote best practices in using psychotropics among children and youth.

Development of educational modules for MRTs to better support patients with intellectual and developmental disabilities undergoing imaging procedures: A collaborative patient-oriented initiative.

BACKGROUND: Patients with intellectual and developmental disabilities (IDD) experience increased anxiety when undergoing medical imaging procedures for a variety of reasons including sensory overload, comprehension difficulty, and meeting unfamiliar people. There are several strategies that medical radiation technologists (MRTs) can apply to improve the imaging process. The purpose of this project was to work together with patients to develop educational modules and resources for MRTs on how to best support patients with IDD during medical imaging procedures. DEVELOPMENT PROCESS AND FINDINGS: The project team used a four stage process to (1) determine the educational needs of MRTs around imaging procedures for people with IDD and (2) develop a series of online case-based video modules of challenges and improved practices with accompanying digital resources. First, the project team created and distributed a needs assessment survey to MRTs to identify their educational needs, experience, and interest in learning more about how to best support patients with IDD. The results from this needs assessment underscored that developing skills to better support patients with IDD was an area of interest and need amongst OAMRS members, which led to the formation of a working group whose goal was to identify priority topics and how to best teach these topics. Second, we conducted a focus group with adults with IDD, who had experience with imaging procedures, to ensure the lived experience of people with IDD was a pillar of the modules. Third, we developed a set of video scripts and educational slides, informed by the needs assessment with MRTs and the focus group with adults with IDD. The video scripts focused on four scenarios: (1) Waiting for an imaging procedure, (2) & (3) the imaging process (MRI and PET), and (4) the exit interview. Each of these videos focused on common practice errors made during these scenarios, followed by strategies to address those errors. The educational slides focused on: (1) an introduction to people with IDD (2) Communication and (3) Triggers and Strategies. The fourth and final phase focused on filming the teaching videos with actors with IDD and finalizing the educational slides. Together, the set of educational slides and videos formed the modules for MRTs that will be published online. LESSONS LEARNED: Undertaking this process to develop educational modules for MRTs on working with people with IDD taught us that people with IDD have lived experiences which should inform the development of educational material; they must be treated as partners during this development process; and a partnered process takes time to carry out. CONCLUSION: The process that was undertaken allowed the team to develop resources, which can be used by MRTs. Evaluation of the educational modules can inform further refinement and improvement.

Preconception Health Characteristics of Women with Disabilities in Ontario: A Population-Based, Cross-Sectional Study.

Background: There is growing recognition that preconception health, defined as the health of all reproductive-age individuals, impacts reproductive and perinatal outcomes. Although women with disabilities are becoming pregnant at increasing rates, little is known about their preconception health. Our objective was to describe the preconception health characteristics of women with physical, sensory, and intellectual/developmental disabilities and compare these characteristics with women without disabilities. Materials and Methods: We conducted a population-based cross-sectional study of 15- to 44-year-old women with physical (n = 253,184), sensory (n = 93,170), intellectual/developmental (n = 8,986), and multiple disabilities (n = 29,868), and women without these disabilities (n = 2,307,822) using Ontario health administrative data (2017-2018). We described preconception health variables related to social determinants of health, physical health status, psychosocial well-being, history of assault, medication use, and continuity of primary care and compared women with and without disabilities in crude and age-standardized analyses, with standardized differences >0.10 indicating clinically meaningful results. Results: Women with physical, sensory, intellectual/developmental, and multiple disabilities had poorer preconception health than women without disabilities. Disparities were pronounced for physical health status, psychosocial well-being, use of potentially teratogenic medications, and history of assault. Of all groups, women with intellectual/developmental disabilities had the greatest disparities. Conclusion: Further research is needed to identify contributors to poor preconception health among women with disabilities and to develop tailored preconception health interventions to meet their unique needs and experiences.

Identifying reproductive-aged women with physical and sensory disabilities in administrative health data: A systematic review.

BACKGROUND: Women with disabilities experience significant health disparities. A barrier to progress in addressing these disparities is the lack of population-based data on their health outcomes, which are needed to plan health care delivery systems. Administrative health data are increasingly being used to measure the health of entire populations, but these data may only capture impairment and not activity and participation restrictions. OBJECTIVE: We conducted a systematic review to identify and appraise existing literature on the development and validation of algorithms to identify reproductive-aged women with physical and sensory disabilities in administrative health data. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, and Scopus from inception to April 2019 for studies of the development and/or validation of algorithms using diagnostic, procedural, or prescription codes to identify physical and sensory disabilities in administrative health data. Study and algorithm characteristics were extracted and quality was assessed using standardized instruments. RESULTS: Of 14,073 articles initially identified, we reviewed 6 articles representing 2 unique algorithms. One algorithm aimed to correlate diagnoses, procedure codes, and prescriptions with ability to access routine care as an indicator of functional limitation. The other algorithm used diagnostic and procedure codes to identify use of mobility-assistive devices to measure functional limitation. Only one algorithm was validated against self-reported disability. CONCLUSIONS: Our findings underscore the need to strengthen current methods to identify disability in administrative health data, including linkage with other sources of information on functional limitations, so that population-based data can be used to optimize health care for women with disabilities.

Improving the quality of primary care for adults with intellectual and developmental disabilities: Value of the periodic health examination.

OBJECTIVE: To implement a Health Check protocol for patients with intellectual and developmental disabilities (IDD) and assess outcomes. DESIGN: Retrospective chart review and staff survey. SETTING: Two Ontario family health teams. PARTICIPANTS: Of 276 patients with IDD identified, 139 received the Health Check (Health Check group). A convenience sample (N = 147) of clinical staff participated in the survey. MAIN OUTCOME MEASURES: The protocol included patient identification, invitation, and modified health examination. Chart review assessed completion of 8 preventive maneuvers, and clinical staff were surveyed on their comfort, knowledge, and skills in care of patients with IDD. Logistic regression analyses were used to compare outcomes for the Health Check and non-Health Check groups, adjusted for practice site. RESULTS: Documentation of blood pressure, weight, body mass index, and influenza vaccination was significantly higher (P < .001) in the Health Check group, exceeding 70% of patients. Screening rates were higher for mammograms (63% vs 54%), fecal occult blood testing (39% vs 23%), and diabetes testing (80% vs 61%), but not significantly so, and they were similar to general population rates. Papanicolaou test rates were low for both groups (34% vs 32%). Staff comfort and skills were rated significantly higher (P < .05) for those who performed the Health Check. Still, fewer than half thought they had the necessary skills and resources to care for patients with IDD. CONCLUSION: Performing the Health Check was associated with improved preventive care and staff experience. Wider implementation and evaluation is needed, along with protocol adjustments to provide more support to staff for this work.

Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder.

Individuals with autism spectrum disorder (ASD) have many health needs that place demands on the health service sector. This study used administrative data to compare health profiles in young adults 18-24 years of age with ASD to peers with and without other developmental disability. Young adults with ASD were more likely to have almost all the examined clinical health issues and health service use indicators compared to peers without developmental disability. They were more likely to have at least one psychiatric diagnosis, and visit the family physician, pediatrician, psychiatrist, and emergency department for psychiatric reasons, compared to peers with other developmental disability. Planning for the mental health care of transition age adults with ASD is an important priority for health policy.

Identifying the clinical needs and patterns of health service use of adolescent girls and women with autism spectrum disorder.

Girls and women in the general population present with a distinct profile of clinical needs and use more associated health services compared to boys and men; however, research focused on health service use patterns among girls and women with Autism Spectrum Disorder (ASD) is limited. In the current study, caregivers of 61 adolescent girls and women with ASD and 223 boys and men with ASD completed an online survey. Descriptive analyses were conducted to better understand the clinical needs and associated service use patterns of girls and women with ASD. Sex/gender comparisons were made of individuals' clinical needs and service use. Adolescent girls and women with ASD had prevalent co-occurring mental and physical conditions and parents reported elevated levels of caregiver strain. Multiple service use was common across age groups, particularly among adolescent girls and women with intellectual disability. Overall, few sex/gender differences emerged, although a significantly greater proportion of girls and women accessed psychiatry and emergency department services as compared to boys and men. Though the current study is limited by its use of parent report and small sample size, it suggests that girls and women with ASD may share many of the same high clinical needs and patterns of services use as boys and men with ASD. Areas for future research are discussed to help ensure appropriate support is provided to this understudied population. Autism Res 2017, 10: 1558-1566. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Unmet Needs of Adults in Community Mental Health Care With and Without Intellectual and Developmental Disabilities: A Cross-Sectional Study.

The cross-sectional study compared the clinical and need profiles for clients with and without intellectual and developmental disabilities (IDD) in seven mental health case management programs in Toronto, Canada on March 31, 2013. Unmet needs in domains within four broad clusters were measured by staff using an internationally utilized tool, the Camberwell Assessment of Need. Among the 2560 clients, 8.3 % had a co-occurring IDD. For most assessed domains rates of unmet need were not different for persons with and without IDD. However, the IDD group had greater unmet needs for adaptive functioning/skills and cognitive needs [self-care (p = 0.023), education (p < 0.001), transportation (p < 0.001), and information on condition (p = 0.038)]. While clients with IDD and psychiatric diagnoses often receive poor quality care, in the case management programs examined their rates of unmet need were similar to individuals without IDD across most assessed domains, including in the areas of addictions and physical health care.

Evaluating the Implementation of Health Checks for Adults With Intellectual and Developmental Disabilities in Primary Care: The Importance of Organizational Context.

Compared to other adults, those with intellectual and developmental disabilities have more health issues, yet are less likely to receive preventative care. One strategy that has shown success in increasing prevention activities and early detection of illness is the periodic comprehensive health assessment (the health check). Effectively moving evidence into practice is a complex process that often receives inadequate attention. This qualitative study evaluates the implementation of the health check at two primary-care clinics in Ontario, Canada, and the influence of the clinic context on implementation decisions. Each clinic implemented the same core components; however, due to contextual differences, some components were operationalized differently. Adapting to the setting context is important to ensuring successful and sustainable implementation.

Unmet needs among men with human immunodeficiency virus in community mental health care: a cross-sectional study.

While community-based mental health services play an important role in caring for persons with HIV (human immunodeficiency virus) and co-existing mental health disorders, the extent to which their support needs are addressed in this setting is unknown. Accordingly, we examined if HIV infection was associated with unmet support needs among men living with and without HIV receiving community mental health care. This cross-sectional study examined 215 men (135 living with HIV and 80 without HIV) receiving case management services in urban Ontario. Using the Camberwell Assessment of Need, we ascertained the prevalence of support needs in 13 domains grouped into three clusters: Basic needs (accommodation, food, benefits, and money management); self-care/functional needs (daytime activities, self-care, and looking after the home); and health/safety needs (physical, psychological distress, psychotic symptoms, safety to self, and safety to others). We used generalized estimating equations with a logit link to examine the association between HIV and unmet need in each domain. Compared to HIV-negative men, men with HIV were more likely to have mood and concurrent disorders, and intellectual and developmental disabilities. Following multivariable analyses, men with HIV had greater unmet needs related to food (odds ratio + 95% confidence interval: 9.36 (4.03, 21.75), p < 0.001); money (OR: 1.90 (1.04, 3.47), p = 0.036) [basic need domains]; psychological distress (OR: 2.39 (1.68, 3.41), p < 0.001); drug use (OR: 5.10 (2.16, 12.08) p < 0.001); and safety to self (OR: 3.35 (1.51, 7.52), p < 0.003) [health and safety domains]. Despite living in a setting with universal health insurance, men with HIV receiving community mental health support had greater unmet need in basic and health domains than HIV-negative men receiving such support. Further research is required to develop and evaluate interventions to best support community-dwelling persons with HIV and mental health disorders.

Pregnancy in Women With Intellectual and Developmental Disabilities.

OBJECTIVE: Our objectives were to describe the general fertility rate (GFR) and age-specific fertility rates (ASFRs) of women with intellectual and developmental disabilities (IDD) and the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD. METHODS: In this population-based retrospective cohort study using linked Ontario health and social services administrative data, we identified 18- to 49-year-old women with IDD (N = 21 181) and without IDD (N = 990 776). The GFR and ASFRs (2009) were calculated for both groups and compared using rate ratios (RR) and 95% confidence intervals (CI). Among women with a singleton live birth (N = 423 with, N = 42 439 without IDD), social and health characteristics were compared using Pearson's Chi square tests. RESULTS: The GFR in women with IDD (20.3 per 1000) was lower than that in women without IDD (43.4 per 1000) (RR 0.47; 95% CI 0.43 to 0.51). ASFRs in 18- to 24-year-olds were similar in both groups. Among women with a singleton live birth, those with IDD were younger and had higher rates of poverty, epilepsy, obesity, and mental health issues. They also had high rates of medication use during pregnancy. CONCLUSION: In the largest study of fertility in women with IDD to date, we found that ASFRs are similar in young women with and without IDD. Women with IDD with a singleton live birth experience significant social and health disparities during pregnancy. These findings suggest the need to develop services to support the reproductive health of this vulnerable group.

Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities.

BACKGROUND: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. METHODS: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. RESULTS: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. CONCLUSIONS: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated.

Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder.

Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents' experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12-25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child's clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.

Staff perception of aggressive behaviour in community services for adults with intellectual disabilities.

Experiencing aggressive behaviour has been associated with increased stress and turnover among staff who support adults with intellectual disabilities. Incident perception is a strong predictor of psychological outcomes after trauma but has not been studied in this staff group. This study clustered exposure to aggression and endorsement of emotional difficulties among 386 community residential group home staff and evaluated the contribution of four behavioural topographies to staff-rated perceived severity. Staff exposure varied considerably. Perceived severity correlated with subjective emotional difficulties. High perceived severity was associated with daily exposure, aggression towards others causing injury, and property aggression causing injury or damage. Therefore, the role the staff plays, whether a witness or target, may impact their experience.

Primary care of adults with developmental disabilities in Ontario.

The health status and healthcare of adults with developmental disabilities have not been well-studied in Ontario, due to the absence of population-based data. To address this deficit, the Health Care Access Research and Developmental Disabilities (H-CARDD) program - a provincial partnership of scientists, policymakers and clinicians - has used existing provincial-level administrative data to provide descriptive information on the health of adults with developmental disabilities and the quality of their primary care relative to other adults. H-CARDD's findings have revealed many gaps in the care of adults with developmental disabilities. While primary care providers are critical to achieving needed changes, the broader healthcare context and infrastructure also need to be considered.

Acute inpatient treatment, hospitalization course and direct costs in bipolar patients with intellectual disability.

To explore the impacts of intellectual disability (ID) on psychotropic medication use, length of hospital stay (LOS) and direct hospitalization costs during inpatient treatment for acute bipolar episodes, all 17,899 index hospitalizations due to acute bipolar episodes between 1998 and 2007 in Taiwan were identified from a total population health insurance claims database, amongst which 544 subjects had a concomitant diagnosis of ID. Pattern of psychotropic medication use, LOS, discharge outcome and direct costs during hospitalization were compared between bipolar patients with ID and without ID and multivariate models controlling for major cost confounders were used to explore the impacts of ID on LOS, discharge outcome and inpatient costs. The results indicated that, compared to bipolar patients without ID, bipolar patients with ID were younger, had longer LOS and received significantly lower daily equivalent dosages of antipsychotics, mood stabilizers, lithium and benzodiazepines. Significantly more bipolar patients with ID could not be discharged successfully. The longer LOS possibly reflected slower clinical stabilization, conservative use of medications and difficulty in community placement. The lower average daily reimbursements indicated that treatment of bipolar patients with ID were under-funded, whereas the higher total direct costs resulting from prolonged LOS placed greater economic straint on healthcare system. The findings support that bipolar patients with ID are clinically unique but relatively under-supported during acute hospitalization. Modifying current pharmacological intervention, health care resources allocation and community supporting structure is paramount to reducing LOS and improving hospitalization outcome.

Predictors of emergency department visits by persons with intellectual disability experiencing a psychiatric crisis.

OBJECTIVE: This study identified predictors of emergency department use by persons with intellectual disability during psychiatric crises. METHODS: Data were analyzed for 576 adults with intellectual disability who were living in three urban centers in Ontario, Canada, and who experienced a psychiatric crisis between 2007 and 2009. Those who visited an emergency department in response to the crisis (N=96) were compared with those who did not (N=480). RESULTS: Multiple logistic regression analysis identified one predisposing, three enabling, and two need variables that were significant predictors of emergency department visits: level of disability, type of residence, crisis plan, family physician, history of involvement with the criminal justice system, and history of emergency department visits. CONCLUSIONS: Both need variables and variables not related to need predicted emergency department visits by persons with intellectual disability. Prevention efforts should focus on individuals who receive fewer community supports and who have previous emergency department visits.