Achieving better health for people with intellectual disability: the power of policy

People with intellectual disability have high mental and physical healthcare needs, which must be addressed on individual, local and national levels. Policy interventions informed by research and stakeholder views and extending beyond a focus on health are needed to reduce inequities in this group

Experiences of Families of Individuals with Intellectual Disability and Psychiatric Disorder

Caring for individuals with intellectual disability often results in stressful experiences for family caregivers, even leading to crisis in some cases. This paper uses the Brief Family Distress Scale (BFDS) to assess the subjective experience of crisis in a clinical sample of 29 families of individuals with intellectual disability and psychiatric disorder. Our analyses determined that 58% of the families rated themselves as 6 or above on the BFDS, indicative of approaching crisis or worse. An analysis of the BFDS’ correlation with related constructs and stressors, and families’ need for certain resources and services are further discussed

Perceived self-efficacy in parents of adolescents and adults with Autism Spectrum Disorder

Many parents of adolescents and adults with Autism Spectrum Disorder (ASD) 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 ASD across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.This research was funded by the Canadian Institutes of Health Research (MOP 102677). Dr. Weiss is supported by the Chair in ASD Treatment and Care Research (Canadian Institutes of Health Research #284208 in partnership with NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada, and Health Canada)

Child, parent, and service predictors of psychotropic polypharmacy among adolescents and young adults with an autism spectrum disorder

Objectives: This study examined the child, parent, and service factors associated with polypharmacy in adolescents and young adults with ASD. Methods: As part of an online survey examining health service utilization patterns among individuals with ASD, parents provided demographic and clinical information pertaining to their child. This included information on current medication use, as well as information on clinical services received, clinical history, and parent wellbeing. Analyses examined the bivariate association between individual child, parent, and service variables and polypharmacy. Variables significantly associated with polypharmacy were included in a multiple variable logistic regression. Results: Of the 363 participants sampled, approximately one quarter were receiving two or more psychotropic drugs concurrently. The child’s psychiatric co-morbidity, history of hurting others, therapy use, and parent burden were predictors of polypharmacy. Conclusion: Adolescents and young adults with ASD are a highly medicated population with multiple factors associated with psychotropic polypharmacy. While there may be circumstances where polypharmacy is necessary, a richer understanding of what predicts polypharmacy may lead to targeted interventions to better support these individuals and their families. Findings also highlight the need to support families of children with ASD prescribed multiple psychotropic medications.The Canadian Institutes of Health Research (funding reference number 102677) and the Centre for Addiction and Mental Health Postdoctoral Fellowship Award

Direct and Indirect Psychosocial Outcomes for Children with Autism Spectrum Disorder and their Parents Following a Parent-involved Social Skills Group Intervention

Objective: This study examined the direct and indirect outcomes of a social skills group intervention for children with high functioning autism spectrum disorders and their parents. Method: Thirty-five children and their parents participated in_the program evaluation. Children and parents completed measures of child social skills and problem behaviors. Children reported on their self-concept, and parents reported on their psychological acceptance and empowerment. Results: Results indicate significant increases in overall child social skills according to parent and child report, in child general self- worth, and in parent service empowerment and psychological acceptance. Conclusion: While past program evaluations of social skills groups highlight changes in social competence, taking a broader perspective on the types of positive outcomes suggests potential benefits for both child and parent

A Review of Emergency Visits made by Youth and Adults with Autism Spectrum Disorder from the Parent Perspective

Purpose: Past research has shown individuals with autism spectrum disorder (ASD) visit hospital emergency departments (ED) at high rates. In order to assist individuals with ASD, their families and health care providers to improve ED care, it is important to understand these encounters in greater detail. This study aimed to provide a descriptive summary of the ED experiences of adolescents and adults with ASD, from the perspective of their families. Design/Methodology/Approach: A subset of data from a larger prospective cohort study was used. Specifically, 46 parents of adolescents and adults with ASD provided details concerning 49 ED visits over a 12-month period. Findings: Results suggest a range of presentations requiring ED use, and also diverse profiles of those with ASD who visited the ED, in terms of age, gender, and ASD severity. While overall degree of satisfaction with care received in the ED was high, parents provided recommendations to improve the ED experiences for their family members with ASD. Originality/value: This is the first study to provide detailed accounts of ED visits from the perspective of parents of adolescents and adults with ASD. Families play an important role in the lives of individuals with ASD across the lifespan and it is important to include their perspective to improve hospital- based care for those with ASD

Comparative effects of mindfulness and support and information group interventions for parents of adults with autism spectrum disorders and other developmental disabilities

This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group were maintained at 20 weeks follow-up. Mindfulness scores and mindful parenting scores and related constructs (e.g., self-compassion) did not differ between the two groups. Results suggest the psychological components of the mindfulness based group intervention were effective over and above the non-specific effects of group processes and informal support

Defining crisis in families of individuals with autism spectrum disorders

DOI: 10.1177/1362361313508024Parents of children diagnosed with autism spectrum disorder often report higher levels of depression, anxiety, and mental health–related issues. The combination of stressors and family adjustment difficulties can cause distress which may develop into a crisis. Understanding crisis in the family is important to mental health practice since it can serve as a guide in delivering service to at-risk families. This study investigated the subjective experience of crisis in 155 mothers of children diagnosed with autism spectrum disorder. Thematic analysis revealed that crisis is characterized by factors influencing four major areas: demands, internal capabilities, external resources, and subjective appraisal. Understanding what crisis means to families of individuals with autism spectrum disorder can help inform effective preventative and crisis services.Chair in Autism Spectrum Disorders Treatment and Care Research (Canadian Institute for Health Research, NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada, and Health Canada), the Spectrum of Hope Autism Foundation, and Ontario Mental Health Foundatio

Online mindfulness stress intervention for family carers of children and adults with intellectual disabilities : feasibility randomized controlled trial

Objectives: Family carers of people with intellectual disabilities (ID) are twice as likely as other carers to experience stress and mental ill-health, but research exploring interventions is sparse. Online mindfulness may provide an accessible, cost-effective resource. The addition of guided telephone support could help to tailor an existing intervention for this population. A feasibility randomized controlled trial (RCT) was conducted to inform the development of a definitive RCT. Methods: Sixty participants were randomized to complete Be Mindful (a brief online mindfulness intervention) either with or without additional Peer Mentor support. Feasibility of recruitment, retention, intervention adherence, and acceptability of study design were examined. Preliminary analyses were undertaken on participant-reported outcomes pre- and post-intervention. Eighteen semi-structured interviews were conducted as a process evaluation. Results: Feasibility outcomes indicate that it would be possible to recruit and retain (88%) participants to a definitive RCT, and that the study design and intervention are acceptable. The addition of guided telephone support was not burdensome; indeed, it was additionally motivating. Telephone support can be delivered with high fidelity, but this is inconsistent and requires further piloting. Preliminary comparison data indicate small, but non-significant, improvements for participants receiving guided telephone support relative to those who did not over time. Conclusions: It is feasible to deliver online mindfulness with additional telephone guided support to family carers of people with ID, and this may lead to small benefits over receiving online mindfulness alone. A definitive RCT can be planned to examine the effectiveness and cost-effectiveness of this intervention

Plugged in: Electronics use in youth and young adults with Autism Spectrum Disorder

Although electronic technology currently plays an integral role for most youth, there are growing concerns of its excessive and compulsive use. The current study documents patterns and impact of electronics use in individuals with Autism Spectrum Disorder (ASD) compared to typically developing peers. Participants included 172 parents of typically developing individuals and 139 parents of individuals with an ASD diagnosis, ranging in age from 6 to 21 years. Parents completed an online survey of demographics and the frequency, duration, and problematic patterns of electronics use in their youth and young adults. Individuals with ASD were reported to use certain electronics more often in the last month and on an average day, and had greater compulsive Internet and video game use than individuals without ASD. Across both samples, males used video games more often than females. Compared to parents of individuals without ASD, parents of individuals with ASD were significantly more likely to report that electronics use was currently having a negative impact. The implications of problematic electronics use for individuals with ASD are discussed