Virginie Cobigo | University of Ottawa | Université d'Ottawa (original) (raw)
Papers by Virginie Cobigo
2019 7th International conference on ICT & Accessibility (ICTA), 2019
Persons with cognitive disabilities (CD) can benefit from using technologies to support their hea... more Persons with cognitive disabilities (CD) can benefit from using technologies to support their health and independence. However, these users often struggle to access and use technologies because their needs are not accounted for in most technology development processes. One of the main reasons for this is because technology developers often experience tension between accommodating the needs of these users with feasibility considerations. In this case study, we describe our transdisciplinary, inclusive and iterative process for reconciling users' needs and feasibility considerations when developing a medication management app for persons with CD. This paper may serve as a valuable resource for technology developers who are interested in developing products for persons with CD, by highlighting some of the real-world challenges they may encounter and providing guidance on how to overcome them.
Information about pregnancy and childbirth is frequently inaccessible to women with intellectual ... more Information about pregnancy and childbirth is frequently inaccessible to women with intellectual and developmental disabilities (IDD). Our objectives were therefore to describe pregnancy and childbirth-related knowledge among women with IDD, perinatal informational support received, and the barriers and facilitators to obtaining this support. Using secondary data from a broader qualitative study on social support received by women with IDD during pregnancy and childbirth, we developed two case studies specific to informational support received during this period. Content analysis was used to analyze interview data. Both women with IDD possessed general perinatal knowledge. Factors influencing receipt of informational support included information format (e.g., written versus verbal instruction; group vs. one-on-one learning), level of autonomy, and caregiver involvement (formal and informal). Findings are consistent with previous research demonstrating that perinatal informational support is not always accessible to women with IDD. Accessible perinatal informational support may contribute to improved pregnancy outcomes and therefore should be a social and clinical priority.
Canadian family physician Medecin de famille canadien, 2019
OBJECTIVE To gain an understanding of the support needs of adults with intellectual and developme... more OBJECTIVE To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs). DESIGN Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD. SETTING Ontario. PARTICIPANTS A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs. METHODS Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs. MAIN FINDINGS Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this...
Journal of applied research in intellectual disabilities : JARID, 2020
BACKGROUND There is a lack of information about cross-sector service use by children with develop... more BACKGROUND There is a lack of information about cross-sector service use by children with developmental disabilities despite their need for services from multiple sectors. METHODS Responses to service use questions from a parent-completed survey on school-aged children who attended clinics specific for those with developmental disabilities at a Canadian children's hospital were examined. RESULTS School meetings were the most common of three professional meeting types attended in the last 12 months (64.9%) for the sample of 205 children. Recreational services were the most common of five service types received in the same time period (79.0%). Using ordinal logistic regression models, a higher number of behavioural difficulties was the only variable consistently related to indices of more meeting types (school, physician, other) attended and more service types received (recreation, respite, etc.). CONCLUSIONS The service relationship with behavioural problems, and not socio-demogr...
Studies in health technology and informatics, 2017
Ethical issues arise when the risks and benefits of technology use are unclear or controversial, ... more Ethical issues arise when the risks and benefits of technology use are unclear or controversial, or their access inequitable. This paper presents a preliminary framework for understanding ethical issues related to IT development and adoption by elderly persons with cognitive impairments and their caregivers. The development of the framework relied on a hybrid qualitative approach that draws on several data sources: 1) systematic literature review, 2) focus groups with IT users, and 3) a reflexive researcher-learning diary.Preliminary findings were synthesized into a coherent model that views IT adoption as the outcome of complex interactions between different factors: 1) Personal factors that include the cognitive abilities of the users, as well as their physical and sensory limitations, and 2) Environmental factors that are related to the technology, the caregivers, and the support networks of the user with cognitive impairment. Findings from this project will help better understan...
Journal of rehabilitation and assistive technologies engineering, 2020
Introduction Information Technologies (IT) may serve assistive roles that facilitate the interact... more Introduction Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers' knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge. Method We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant...
Services and supports for persons with intellectual and developmental disabilities (IDD) worldwid... more Services and supports for persons with intellectual and developmental disabilities (IDD) worldwide have transitioned – or currently are – towards a community-based approach that enhances social inclusion. This paper presents principles that could guide quality improvement monitoring in community services for adults with IDD. The principles were developed through a series of activities aiming to better understand relevant service outcomes, such as social inclusion and choice; consultations with various stakeholder groups including persons with IDD; and review of available data about the users of services and supports for Ontarians with IDD. The five guiding principles are: (1) activities are embedded within a continuous quality improvement cycle; (2) activities focus on personal outcomes that are important to persons with IDD; (3) activities capture the multidimensional nature of the outcomes being measured; (4) knowledge is developed from multiple perspectives; and (5) knowledge is ...
Technology and Disability, 2020
BACKGROUND: Although aging persons with cognitive disabilities may benefit from information techn... more BACKGROUND: Although aging persons with cognitive disabilities may benefit from information technologies (IT), researchers have identified barriers affecting their IT use. However, most studies do not emphasize the needs and experiences reported by these users themselves. OBJECTIVE: To identify factors affecting IT use from the perspective of aging persons with cognitive disabilities. METHODS: We conducted a scoping review of peer-reviewed studies published between January 2008 and December 2018 that investigated IT use by aging persons with cognitive disabilities as reported by these individuals. Factors affecting participants' IT use were synthesized through a thematic analysis of relevant studies' findings. RESULTS: Seven studies were included in our analysis. We found technology-related (accessibility, usefulness, cost), social (support, stigma and other social pressure), and personal (experience with IT, attitudes toward IT use, functional limitations, life situation) factors related to participants' IT use. Stigma was identified as a key barrier to IT use that has been underestimated in previous quantitative research. CONCLUSIONS: Understanding the role that stigma plays in the use and adoption of technology among aging persons with cognitive disabilities is critical to developing successful strategies to promote this population's IT use.
Stigma Research and Action, 2012
Objective: Social inclusion is a right as well as a goal for community-based services and support... more Objective: Social inclusion is a right as well as a goal for community-based services and supports. Yet, there is a lack of consensus as to what constitutes social inclusion, which means that there is no real way to determine and measure services effectiveness. This paper identified current key components, definitions, and conceptual approaches to social inclusion, and determined gaps in the scope and clarity of existing conceptualizations. Method: We conducted a synthesis review on the social inclusion of persons with intellectual and developmental disabilities. We extracted data relevant to the definition of social inclusion, its key principles and elements, as well as its main challenges. We adopted a narrative approach to synthesize the findings. Results: The main challenges in understanding social inclusion are: social inclusion is at risk of being an ideology and may lead to ineffective and potentially harmful strategies; social inclusion is still mainly defined as the acceptance and achievement of the dominant societal values and lifestyle, which may lead to moralistic judgements; social inclusion is often narrowly defined and measured as productivity and independent living, which is inappropriate for people with more severe disabilities; and social inclusion is often limited to the measure of one’s participation in community-based activities. Conclusion and Implications: Shifting our understanding of social inclusion is essential. It means: adopting a proactive perspective that moves beyond theoretical discourse and leads to the identification of tools to improve social inclusion; abandoning the moralistic perspective that tends to impose the view of the dominant group and leaning toward an approach respectful of individuals’ expectations, choices and needs; defining social inclusion from a developmental perspective where one’s social inclusion improves with increased opportunities to interact with others and participate in activities; and including sense of belonging and well-being in our definition and measure of social inclusion.
Journal of the American Academy of Child & Adolescent Psychiatry, 2019
Objectives: A lack of reliable and valid measures of child social cognition can hinder diagnostic... more Objectives: A lack of reliable and valid measures of child social cognition can hinder diagnostic and treatment planning and evaluation. This study aimed to evaluate the feasibility and utility of the Mind Read section of a new app (The Pediatric Evaluation of Emotions, Relationships and Socialization [PEERS]) in assessing theory of mind in children. PEERS was developed to assess attention/executive functioning, social cognition, and social communication in individuals aged 4-17.11 years. Methods: Participants comprised 23 youth ages 8-12 years (mean ¼ 9.59, SD ¼ 1.81) with a primary diagnoses of ADHD (n ¼ 12), anxiety-related disorder (n ¼ 9), or OCD (n ¼ 2). Research assistants administered Mind Read individually to participants. Mind Read consists of 36 video vignettes of common teenage interactions and takes approximately 20 minutes to administer. Vignettes are followed by questions assessing comprehension and the ability to make social inferences and predict socially appropriate behaviors. Children's understanding of socially appropriate behaviors was also assessed using paper-andpencil story vignettes: James and the Math Test, and Dylan is Being Teased. Children's application of emotion regulation and social skills was examined using parent and teacher-report forms of the Emotion Regulation and Social Skills Questionnaire and the Spence Social Skills Questionnaire. Correlational analyses were conducted to assess the strength of associations between Mind Read scores and paper-and-pencil measures. Results: Children often struggled to engage with and maintain focus on Mind Read. No significant correlations were found between Mind Read scores and total scores on the James (rs < 0.38, p > 0.13) and Dylan (rs < 0.46, p > 0.07) measures. Likewise, there were no significant correlations among Mind Read total correct, total duration, and error scores and parent (rs < 0.43, p > 0.06) and teacher (rs < 0.45, p > 0.11) measures of children's emotion regulation and social skills. Conclusions: The feasibility and use of Mind Read appeared to be limited for our child sample group, possibly because of the app duration, focus and impulse-control issues, and the teenage content of the vignettes being developmentally inappropriate.
Journal of the American Academy of Child & Adolescent Psychiatry, 2019
aimed to address this question, using data from a large sample group in the United States. Method... more aimed to address this question, using data from a large sample group in the United States. Methods: Using Market ScanÒ insurance claims data (2000-2016), we conducted a nested case-control study within an ASD cohort. The cohort contained individuals with 2 or more claims for ASD and between 3 and 18 years of age, provided that no Rett syndrome or previous history of a CV event was observed. We defined a serious CV event as the first sign of: stroke; myocardial infarction (MI); ventricular arrhythmia; or cardiac arrest. For each case, we matched up to 10 control subjects on calendar time, age, sex, and insurance type. After matching, we checked for current prescription of stimulants and/or atomoxetine (ADHD medications) as the main exposure definition. We conducted a crude (matched) conditional logistic regression analysis, as well as sensitivity analyses controlling for health care use, underlying CV comorbidities, mental illness comorbidities, and other psychotropic medications using adjusted regression models and propensity score weighting approaches. Results: Of the 326,221 individuals identified with ASD, 48 (0.01%) had a serious CV event. The mean (SD) age for cases was 12.5 (4.42) years, and 79.2 percent were male. All case subjects were matched to 10 control subjects as planned (control group: N ¼ 480). The crude rate of current ADHD medication use for case subjects was 12.5 percent (n ¼ 6) vs. 22.1 percent (n ¼ 106) for control subjects. This translated to no association of ADHD medication use with CV events in the crude matched analysis (OR ¼ 0.49 [95% CI 0.20-1.20]). Similar results were found after adjusting for all covariates using both a propensity score approach (0.71 [0.28-1.83]) and an adjusted logistic regression model (1.20 [0.33-4.41]). Conclusions: For children and adolescents with ASD, we found no increased serious CV risk when exposed to ADHD medications.
Healthcare Quarterly, 2019
Reproductive healthcare needs of women with intellectual and developmental disabilities (IDD) hav... more Reproductive healthcare needs of women with intellectual and developmental disabilities (IDD) have received little attention. Using health and social services administrative data in Ontario, Canada, we comprehensively documented the reproductive health of women with IDD, including their fertility rates, pregnancy outcomes and reproductive health after pregnancy. Our findings showed high rates of adverse health outcomes for these women and their babies, supporting the development of reproductive healthcare programs tailored to their unique needs.
BMJ Open, 2019
ObjectivesTo describe factors associated with initiating antipsychotics and patterns of persisten... more ObjectivesTo describe factors associated with initiating antipsychotics and patterns of persistence to antipsychotic therapy in a large cohort of adults with intellectual and developmental disabilities.DesignPopulation-based cohort study.SettingOntario, Canada.ParticipantsAdults with intellectual and developmental disabilities (IDD) in Ontario.Outcome measuresWe used multivariable logistic regression to investigate patient characteristics associated with antipsychotic initiation. Patient characteristics studied included sociodemographic characteristics, measures of clinical comorbidity and health service use.ResultsAmong 39 244 individuals eligible for this study, 6924 (17.6%) initiated an antipsychotic over the accrual window, of whom 1863 (26.9%) had no psychiatric diagnosis in the prior 2 years. A number of factors were significantly associated with antipsychotic initiation, including male gender, residence in a group home, prior use of benzodiazepines, antidepressants or cogniti...
Canadian Journal of Nursing Research, 2019
Background Since the illegalization of involuntary sterilization of persons with intellectual and... more Background Since the illegalization of involuntary sterilization of persons with intellectual and developmental disabilities, there has been an increase in childbearing in this population. However, women with intellectual and developmental disabilities continue to experience prejudicial attitudes toward their pregnancies. Objective To analyze the experiences of women with intellectual and developmental disabilities regarding their perceptions of support persons’ attitudes toward their pregnancies. Methods Three case studies derived from grounded theory research exploring perinatal social support received by women with intellectual and developmental disabilities. Using inductive content analysis, we further analyzed the perceptions of women with intellectual and developmental disabilities regarding support persons’ attitudes toward their pregnancies. Findings: The nature of interactions with support persons and women’s characteristics, such as help-seeking behaviors, disability, ment...
Perspectives on sexual and reproductive health, 2018
Women with intellectual and developmental disabilities who experience pregnancy, like all women, ... more Women with intellectual and developmental disabilities who experience pregnancy, like all women, require postpartum care that supports their contraceptive knowledge and decision making. Yet, little is known about the postpartum contraceptive care these women receive, or how it compares with care given to other women. A population-based study using linked health and social services administrative data examined provision of postpartum contraceptive care to women who had a live birth in Ontario, Canada, in 2002-2014 and were beneficiaries of Ontario's publicly funded drug plan. Modified Poisson regression was used to compare care between 1,181 women with and 36,259 women without intellectual and developmental disabilities. Outcomes were provision of any nonbarrier contraceptive in the year following the birth and type of method provided. In the first year postpartum, women with intellectual and developmental disabilities were provided with contraceptives at a higher rate than were ...
American Journal on Intellectual and Developmental Disabilities, 2018
Women with intellectual disability have low screening rates for breast and cervical cancer. This ... more Women with intellectual disability have low screening rates for breast and cervical cancer. This population-based cohort study examined the association between the level of primary care continuity and breast and cervical cancer screening rates in women with intellectual disability. Data were obtained from the Institute for Clinical Evaluative Sciences and the Ontario Ministry of Community and Social Services. Neither high (adjusted OR [aOR] = 1.06; 95% CI: 0.88-1.29) nor moderate (aOR = 1.11; 95% CI: 0.91-1.36) continuity of care were associated with mammography screening. Women were less likely to receive a Pap test with high (aOR = 0.70; 95% CI: 0.64-0.77) and moderate (aOR = 0.81, 95% CI 0.74-0.89) versus low continuity of care. Improving continuity of care may not be sufficient for increasing preventive screening rates.
BJPsych open, 2016
While up to 45% of individuals with intellectual and developmental disabilities (IDD) have a como... more While up to 45% of individuals with intellectual and developmental disabilities (IDD) have a comorbid psychiatric disorder, and antipsychotics are commonly prescribed, gender differences in the safety of antipsychotics have rarely been studied in this population. To compare men and women with IDD on medical outcomes after antipsychotic initiation. Our population-based study in Ontario, Canada, compared 1457 women and 1951 men with IDD newly initiating antipsychotic medication on risk for diabetes mellitus, hypertension, venous thromboembolism, myocardial infarction, stroke and death, with up to 4 years of follow-up. Women were older and more medically complex at baseline. Women had higher risks for venous thromboembolism (HR 1.72, 95% CI 1.15-2.59) and death (HR 1.46, 95% CI 1.02-2.10) in crude analyses; but only thromboembolism risk was greater for women after covariate adjustment (aHR 1.58, 95% CI 1.05-2.38). Gender should be considered in decision-making around antipsychotic medi...
2019 7th International conference on ICT & Accessibility (ICTA), 2019
Persons with cognitive disabilities (CD) can benefit from using technologies to support their hea... more Persons with cognitive disabilities (CD) can benefit from using technologies to support their health and independence. However, these users often struggle to access and use technologies because their needs are not accounted for in most technology development processes. One of the main reasons for this is because technology developers often experience tension between accommodating the needs of these users with feasibility considerations. In this case study, we describe our transdisciplinary, inclusive and iterative process for reconciling users' needs and feasibility considerations when developing a medication management app for persons with CD. This paper may serve as a valuable resource for technology developers who are interested in developing products for persons with CD, by highlighting some of the real-world challenges they may encounter and providing guidance on how to overcome them.
Information about pregnancy and childbirth is frequently inaccessible to women with intellectual ... more Information about pregnancy and childbirth is frequently inaccessible to women with intellectual and developmental disabilities (IDD). Our objectives were therefore to describe pregnancy and childbirth-related knowledge among women with IDD, perinatal informational support received, and the barriers and facilitators to obtaining this support. Using secondary data from a broader qualitative study on social support received by women with IDD during pregnancy and childbirth, we developed two case studies specific to informational support received during this period. Content analysis was used to analyze interview data. Both women with IDD possessed general perinatal knowledge. Factors influencing receipt of informational support included information format (e.g., written versus verbal instruction; group vs. one-on-one learning), level of autonomy, and caregiver involvement (formal and informal). Findings are consistent with previous research demonstrating that perinatal informational support is not always accessible to women with IDD. Accessible perinatal informational support may contribute to improved pregnancy outcomes and therefore should be a social and clinical priority.
Canadian family physician Medecin de famille canadien, 2019
OBJECTIVE To gain an understanding of the support needs of adults with intellectual and developme... more OBJECTIVE To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs). DESIGN Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD. SETTING Ontario. PARTICIPANTS A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs. METHODS Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs. MAIN FINDINGS Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this...
Journal of applied research in intellectual disabilities : JARID, 2020
BACKGROUND There is a lack of information about cross-sector service use by children with develop... more BACKGROUND There is a lack of information about cross-sector service use by children with developmental disabilities despite their need for services from multiple sectors. METHODS Responses to service use questions from a parent-completed survey on school-aged children who attended clinics specific for those with developmental disabilities at a Canadian children's hospital were examined. RESULTS School meetings were the most common of three professional meeting types attended in the last 12 months (64.9%) for the sample of 205 children. Recreational services were the most common of five service types received in the same time period (79.0%). Using ordinal logistic regression models, a higher number of behavioural difficulties was the only variable consistently related to indices of more meeting types (school, physician, other) attended and more service types received (recreation, respite, etc.). CONCLUSIONS The service relationship with behavioural problems, and not socio-demogr...
Studies in health technology and informatics, 2017
Ethical issues arise when the risks and benefits of technology use are unclear or controversial, ... more Ethical issues arise when the risks and benefits of technology use are unclear or controversial, or their access inequitable. This paper presents a preliminary framework for understanding ethical issues related to IT development and adoption by elderly persons with cognitive impairments and their caregivers. The development of the framework relied on a hybrid qualitative approach that draws on several data sources: 1) systematic literature review, 2) focus groups with IT users, and 3) a reflexive researcher-learning diary.Preliminary findings were synthesized into a coherent model that views IT adoption as the outcome of complex interactions between different factors: 1) Personal factors that include the cognitive abilities of the users, as well as their physical and sensory limitations, and 2) Environmental factors that are related to the technology, the caregivers, and the support networks of the user with cognitive impairment. Findings from this project will help better understan...
Journal of rehabilitation and assistive technologies engineering, 2020
Introduction Information Technologies (IT) may serve assistive roles that facilitate the interact... more Introduction Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers' knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge. Method We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant...
Services and supports for persons with intellectual and developmental disabilities (IDD) worldwid... more Services and supports for persons with intellectual and developmental disabilities (IDD) worldwide have transitioned – or currently are – towards a community-based approach that enhances social inclusion. This paper presents principles that could guide quality improvement monitoring in community services for adults with IDD. The principles were developed through a series of activities aiming to better understand relevant service outcomes, such as social inclusion and choice; consultations with various stakeholder groups including persons with IDD; and review of available data about the users of services and supports for Ontarians with IDD. The five guiding principles are: (1) activities are embedded within a continuous quality improvement cycle; (2) activities focus on personal outcomes that are important to persons with IDD; (3) activities capture the multidimensional nature of the outcomes being measured; (4) knowledge is developed from multiple perspectives; and (5) knowledge is ...
Technology and Disability, 2020
BACKGROUND: Although aging persons with cognitive disabilities may benefit from information techn... more BACKGROUND: Although aging persons with cognitive disabilities may benefit from information technologies (IT), researchers have identified barriers affecting their IT use. However, most studies do not emphasize the needs and experiences reported by these users themselves. OBJECTIVE: To identify factors affecting IT use from the perspective of aging persons with cognitive disabilities. METHODS: We conducted a scoping review of peer-reviewed studies published between January 2008 and December 2018 that investigated IT use by aging persons with cognitive disabilities as reported by these individuals. Factors affecting participants' IT use were synthesized through a thematic analysis of relevant studies' findings. RESULTS: Seven studies were included in our analysis. We found technology-related (accessibility, usefulness, cost), social (support, stigma and other social pressure), and personal (experience with IT, attitudes toward IT use, functional limitations, life situation) factors related to participants' IT use. Stigma was identified as a key barrier to IT use that has been underestimated in previous quantitative research. CONCLUSIONS: Understanding the role that stigma plays in the use and adoption of technology among aging persons with cognitive disabilities is critical to developing successful strategies to promote this population's IT use.
Stigma Research and Action, 2012
Objective: Social inclusion is a right as well as a goal for community-based services and support... more Objective: Social inclusion is a right as well as a goal for community-based services and supports. Yet, there is a lack of consensus as to what constitutes social inclusion, which means that there is no real way to determine and measure services effectiveness. This paper identified current key components, definitions, and conceptual approaches to social inclusion, and determined gaps in the scope and clarity of existing conceptualizations. Method: We conducted a synthesis review on the social inclusion of persons with intellectual and developmental disabilities. We extracted data relevant to the definition of social inclusion, its key principles and elements, as well as its main challenges. We adopted a narrative approach to synthesize the findings. Results: The main challenges in understanding social inclusion are: social inclusion is at risk of being an ideology and may lead to ineffective and potentially harmful strategies; social inclusion is still mainly defined as the acceptance and achievement of the dominant societal values and lifestyle, which may lead to moralistic judgements; social inclusion is often narrowly defined and measured as productivity and independent living, which is inappropriate for people with more severe disabilities; and social inclusion is often limited to the measure of one’s participation in community-based activities. Conclusion and Implications: Shifting our understanding of social inclusion is essential. It means: adopting a proactive perspective that moves beyond theoretical discourse and leads to the identification of tools to improve social inclusion; abandoning the moralistic perspective that tends to impose the view of the dominant group and leaning toward an approach respectful of individuals’ expectations, choices and needs; defining social inclusion from a developmental perspective where one’s social inclusion improves with increased opportunities to interact with others and participate in activities; and including sense of belonging and well-being in our definition and measure of social inclusion.
Journal of the American Academy of Child & Adolescent Psychiatry, 2019
Objectives: A lack of reliable and valid measures of child social cognition can hinder diagnostic... more Objectives: A lack of reliable and valid measures of child social cognition can hinder diagnostic and treatment planning and evaluation. This study aimed to evaluate the feasibility and utility of the Mind Read section of a new app (The Pediatric Evaluation of Emotions, Relationships and Socialization [PEERS]) in assessing theory of mind in children. PEERS was developed to assess attention/executive functioning, social cognition, and social communication in individuals aged 4-17.11 years. Methods: Participants comprised 23 youth ages 8-12 years (mean ¼ 9.59, SD ¼ 1.81) with a primary diagnoses of ADHD (n ¼ 12), anxiety-related disorder (n ¼ 9), or OCD (n ¼ 2). Research assistants administered Mind Read individually to participants. Mind Read consists of 36 video vignettes of common teenage interactions and takes approximately 20 minutes to administer. Vignettes are followed by questions assessing comprehension and the ability to make social inferences and predict socially appropriate behaviors. Children's understanding of socially appropriate behaviors was also assessed using paper-andpencil story vignettes: James and the Math Test, and Dylan is Being Teased. Children's application of emotion regulation and social skills was examined using parent and teacher-report forms of the Emotion Regulation and Social Skills Questionnaire and the Spence Social Skills Questionnaire. Correlational analyses were conducted to assess the strength of associations between Mind Read scores and paper-and-pencil measures. Results: Children often struggled to engage with and maintain focus on Mind Read. No significant correlations were found between Mind Read scores and total scores on the James (rs < 0.38, p > 0.13) and Dylan (rs < 0.46, p > 0.07) measures. Likewise, there were no significant correlations among Mind Read total correct, total duration, and error scores and parent (rs < 0.43, p > 0.06) and teacher (rs < 0.45, p > 0.11) measures of children's emotion regulation and social skills. Conclusions: The feasibility and use of Mind Read appeared to be limited for our child sample group, possibly because of the app duration, focus and impulse-control issues, and the teenage content of the vignettes being developmentally inappropriate.
Journal of the American Academy of Child & Adolescent Psychiatry, 2019
aimed to address this question, using data from a large sample group in the United States. Method... more aimed to address this question, using data from a large sample group in the United States. Methods: Using Market ScanÒ insurance claims data (2000-2016), we conducted a nested case-control study within an ASD cohort. The cohort contained individuals with 2 or more claims for ASD and between 3 and 18 years of age, provided that no Rett syndrome or previous history of a CV event was observed. We defined a serious CV event as the first sign of: stroke; myocardial infarction (MI); ventricular arrhythmia; or cardiac arrest. For each case, we matched up to 10 control subjects on calendar time, age, sex, and insurance type. After matching, we checked for current prescription of stimulants and/or atomoxetine (ADHD medications) as the main exposure definition. We conducted a crude (matched) conditional logistic regression analysis, as well as sensitivity analyses controlling for health care use, underlying CV comorbidities, mental illness comorbidities, and other psychotropic medications using adjusted regression models and propensity score weighting approaches. Results: Of the 326,221 individuals identified with ASD, 48 (0.01%) had a serious CV event. The mean (SD) age for cases was 12.5 (4.42) years, and 79.2 percent were male. All case subjects were matched to 10 control subjects as planned (control group: N ¼ 480). The crude rate of current ADHD medication use for case subjects was 12.5 percent (n ¼ 6) vs. 22.1 percent (n ¼ 106) for control subjects. This translated to no association of ADHD medication use with CV events in the crude matched analysis (OR ¼ 0.49 [95% CI 0.20-1.20]). Similar results were found after adjusting for all covariates using both a propensity score approach (0.71 [0.28-1.83]) and an adjusted logistic regression model (1.20 [0.33-4.41]). Conclusions: For children and adolescents with ASD, we found no increased serious CV risk when exposed to ADHD medications.
Healthcare Quarterly, 2019
Reproductive healthcare needs of women with intellectual and developmental disabilities (IDD) hav... more Reproductive healthcare needs of women with intellectual and developmental disabilities (IDD) have received little attention. Using health and social services administrative data in Ontario, Canada, we comprehensively documented the reproductive health of women with IDD, including their fertility rates, pregnancy outcomes and reproductive health after pregnancy. Our findings showed high rates of adverse health outcomes for these women and their babies, supporting the development of reproductive healthcare programs tailored to their unique needs.
BMJ Open, 2019
ObjectivesTo describe factors associated with initiating antipsychotics and patterns of persisten... more ObjectivesTo describe factors associated with initiating antipsychotics and patterns of persistence to antipsychotic therapy in a large cohort of adults with intellectual and developmental disabilities.DesignPopulation-based cohort study.SettingOntario, Canada.ParticipantsAdults with intellectual and developmental disabilities (IDD) in Ontario.Outcome measuresWe used multivariable logistic regression to investigate patient characteristics associated with antipsychotic initiation. Patient characteristics studied included sociodemographic characteristics, measures of clinical comorbidity and health service use.ResultsAmong 39 244 individuals eligible for this study, 6924 (17.6%) initiated an antipsychotic over the accrual window, of whom 1863 (26.9%) had no psychiatric diagnosis in the prior 2 years. A number of factors were significantly associated with antipsychotic initiation, including male gender, residence in a group home, prior use of benzodiazepines, antidepressants or cogniti...
Canadian Journal of Nursing Research, 2019
Background Since the illegalization of involuntary sterilization of persons with intellectual and... more Background Since the illegalization of involuntary sterilization of persons with intellectual and developmental disabilities, there has been an increase in childbearing in this population. However, women with intellectual and developmental disabilities continue to experience prejudicial attitudes toward their pregnancies. Objective To analyze the experiences of women with intellectual and developmental disabilities regarding their perceptions of support persons’ attitudes toward their pregnancies. Methods Three case studies derived from grounded theory research exploring perinatal social support received by women with intellectual and developmental disabilities. Using inductive content analysis, we further analyzed the perceptions of women with intellectual and developmental disabilities regarding support persons’ attitudes toward their pregnancies. Findings: The nature of interactions with support persons and women’s characteristics, such as help-seeking behaviors, disability, ment...
Perspectives on sexual and reproductive health, 2018
Women with intellectual and developmental disabilities who experience pregnancy, like all women, ... more Women with intellectual and developmental disabilities who experience pregnancy, like all women, require postpartum care that supports their contraceptive knowledge and decision making. Yet, little is known about the postpartum contraceptive care these women receive, or how it compares with care given to other women. A population-based study using linked health and social services administrative data examined provision of postpartum contraceptive care to women who had a live birth in Ontario, Canada, in 2002-2014 and were beneficiaries of Ontario's publicly funded drug plan. Modified Poisson regression was used to compare care between 1,181 women with and 36,259 women without intellectual and developmental disabilities. Outcomes were provision of any nonbarrier contraceptive in the year following the birth and type of method provided. In the first year postpartum, women with intellectual and developmental disabilities were provided with contraceptives at a higher rate than were ...
American Journal on Intellectual and Developmental Disabilities, 2018
Women with intellectual disability have low screening rates for breast and cervical cancer. This ... more Women with intellectual disability have low screening rates for breast and cervical cancer. This population-based cohort study examined the association between the level of primary care continuity and breast and cervical cancer screening rates in women with intellectual disability. Data were obtained from the Institute for Clinical Evaluative Sciences and the Ontario Ministry of Community and Social Services. Neither high (adjusted OR [aOR] = 1.06; 95% CI: 0.88-1.29) nor moderate (aOR = 1.11; 95% CI: 0.91-1.36) continuity of care were associated with mammography screening. Women were less likely to receive a Pap test with high (aOR = 0.70; 95% CI: 0.64-0.77) and moderate (aOR = 0.81, 95% CI 0.74-0.89) versus low continuity of care. Improving continuity of care may not be sufficient for increasing preventive screening rates.
BJPsych open, 2016
While up to 45% of individuals with intellectual and developmental disabilities (IDD) have a como... more While up to 45% of individuals with intellectual and developmental disabilities (IDD) have a comorbid psychiatric disorder, and antipsychotics are commonly prescribed, gender differences in the safety of antipsychotics have rarely been studied in this population. To compare men and women with IDD on medical outcomes after antipsychotic initiation. Our population-based study in Ontario, Canada, compared 1457 women and 1951 men with IDD newly initiating antipsychotic medication on risk for diabetes mellitus, hypertension, venous thromboembolism, myocardial infarction, stroke and death, with up to 4 years of follow-up. Women were older and more medically complex at baseline. Women had higher risks for venous thromboembolism (HR 1.72, 95% CI 1.15-2.59) and death (HR 1.46, 95% CI 1.02-2.10) in crude analyses; but only thromboembolism risk was greater for women after covariate adjustment (aHR 1.58, 95% CI 1.05-2.38). Gender should be considered in decision-making around antipsychotic medi...