Stress among caregivers of autistic children: Conceptual analysis and verification using two qualitative datasets.

In this two-part study, we first present the results of a sub-analysis of empirical data from a large grounded theory study of caregivers' (parents) navigating autism-related care. The purpose of this analysis was to develop a conceptual overview of stress and crisis. We then describe the results and feasibility of using a framework analysis approach to verify and extend this conceptual analysis using qualitative survey data from a comparable population.

The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study.

Purpose: In the context of developmental trajectories, the association between adaptive functioning and core autism symptomatology remains unclear. The current study examines the associations of adaptive behavior with autism symptom sub-domains and with different facets of symptom expression.

Methods: Participants include 36 children with a recent diagnosis of autism (33 males; mean age = 56.

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

Introduction: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the (.

Service access experiences of immigrant and refugee caregivers of autistic children in Canada: A scoping review.

Primary caregivers are the main mediators of care for children with an autism diagnosis in Canada, and the navigation process to gain access to autism-related services is known to be a major burden. These challenges to service access are compounded for newcomers to Canada, which include immigrants and refugees. The purpose of this scoping review is to describe the available research on Canadian newcomer caregiver experiences navigating and accessing autism-related services.

Trajectory research in children with an autism diagnosis: A scoping review.

The types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints.

Investigating the Associations Between Child Autistic Symptoms, Socioeconomic Context, and Family Life: A Pilot Study.

The day-to-day experience of families with an Autistic child may be shaped by both, child characteristics and available resources, which often are influenced by the socioeconomic context of the family. Using a socioecological approach, this study explored the quantitative associations between child autistic symptoms, family socioeconomic status, and family life. Data came from the Pediatric Autism Research Cohort-PARC Study (pilot).

Adaptation, Content Validity and Reliability of the Autism Classification System of Functioning for Social Communication: From Toddlerhood to Adolescent-Aged Children with Autism.

The Autism Classification System of Functioning: Social Communication (ACSF) describes social communication functioning levels. First developed for preschoolers with ASD, this study tests an expanded age range (2-to-18 years). The ACFS rates the child's typical and best (i.

Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence.

This study examined the construct validity of the Autism Classification System of Functioning: Social Communication (ACSF). Participants included 145 parents of children with autism (2-19 years). The degree of convergent and discriminant validity between parent reported ACSF and subscales from Social Responsiveness Scale 2nd edition and Behavior Assessment System for Children, 3rd Edition were examined against a priori hypotheses.

Knowledge translation strategies for sharing evidence-based health information with older adults and their caregivers: findings from a persona-scenario method.

Background: By understanding the information seeking behaviors of older adults, we can better develop or iterate effective information technologies, such as the McMaster Optimal Aging Portal, that provide evidence-based health information to the public. This paper reports health-related information seeking and searching behaviours and provides strategies for effective knowledge translation (KT) to increase awareness and use of reliable health information.

Methods: We conducted a qualitative study with eighteen older adults using the persona-scenario method, whereby participants created personas and scenarios describing older adults seeking health information.

Trajectory research in children on the autism spectrum: a scoping review protocol.

Introduction: Longitudinal trajectory methods, featuring outcome assessments at three or more time points, are increasingly being used as appropriate approaches to understand developmental pathways of people on the autism spectrum across the lifespan. Understanding the scope of this rapidly expanding body of research can help inform future trajectory studies and identify areas for potential meta-analysis as well as key evidence gaps. We present the protocol for a scoping review whose objective is to identify and summarise the scope of research that uses a longitudinal trajectory study design to examine development in children diagnosed with autism.

Trajectories of Symptom Severity in Children with Autism: Variability and Turning Points through the Transition to School.

This study examined the trajectories of autistic symptom severity in an inception cohort of 187 children with ASD assessed across four time points from diagnosis to age 10. Trajectory groups were derived using multivariate cluster analysis. A two trajectory/cluster solution was selected.

Parent engagement in autism-related care: a qualitative grounded theory study.

Parents of children with autism assume substantial responsibility for navigating intervention to address autism-related concerns, including involvement in therapy. Little is known, from the perspective of these parents, regarding how to best engage and support them in this navigating process as it evolves over the child's development. In this article, we present findings from a large qualitative study that investigated how parents of children with autism navigate intervention, to construct an in-depth theoretical account of how this group comes to be engaged in individual-level care.

Using qualitative research perspectives to inform patient engagement in research.

Plain English Summary: In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as 'patient engagement', have raised questions about how to engage patients in the research process.

Reviewing the research methods literature: principles and strategies illustrated by a systematic overview of sampling in qualitative research.

Background: Overviews of methods are potentially useful means to increase clarity and enhance collective understanding of specific methods topics that may be characterized by ambiguity, inconsistency, or a lack of comprehensiveness. This type of review represents a distinct literature synthesis method, although to date, its methodology remains relatively undeveloped despite several aspects that demand unique review procedures. The purpose of this paper is to initiate discussion about what a rigorous systematic approach to reviews of methods, referred to here as systematic methods overviews, might look like by providing tentative suggestions for approaching specific challenges likely to be encountered.

Factors explaining the heterogeneity of effects of patient decision aids on knowledge of outcome probabilities: a systematic review sub-analysis.

Background: There is considerable unexplained heterogeneity in previous meta-analyses of randomized controlled trials (RCTs) evaluating the effects of patient decision aids on the accuracy of knowledge of outcome probabilities. The purpose of this review was to explore possible effect modification by three covariates: the type of control intervention, decision aid quality and patients' baseline knowledge of probabilities.

Methods: A sub-analysis of studies previously identified in the 2011 Cochrane review on decision aids for people facing treatment and screening decisions was conducted.

The GRADE approach is reproducible in assessing the quality of evidence of quantitative evidence syntheses.

Objective: We evaluated the inter-rater reliability (IRR) of assessing the quality of evidence (QoE) using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) approach.

Study Design And Setting: On completing two training exercises, participants worked independently as individual raters to assess the QoE of 16 outcomes. After recording their initial impression using a global rating, raters graded the QoE following the GRADE approach.

Inconsistent definitions for intention-to-treat in relation to missing outcome data: systematic review of the methods literature.

Background: Authors of randomized trial reports seem to hold a variety of views regarding the relationship between missing outcome data (MOD) and intention to treat (ITT). The objectives of this study were to systematically investigate how authors of methodology articles define ITT in the presence of MOD, how they recommend handling MOD under ITT, and to make a proposal for potential improvement in the definition and use of ITT in relation to MOD.

Methods And Findings: We systematically searched MEDLINE in February 2009 for methodological articles written in English that devoted at least one paragraph to ITT and two other paragraphs to either ITT or MOD.

Health information technology to facilitate communication involving health care providers, caregivers, and pediatric patients: a scoping review.

Background: Pediatric patients with health conditions requiring follow-up typically depend on a caregiver to mediate at least part of the necessary two-way communication with health care providers on their behalf. Health information technology (HIT) and its subset, information communication technology (ICT), are increasingly being applied to facilitate communication between health care provider and caregiver in these situations. Awareness of the extent and nature of published research involving HIT interventions used in this way is currently lacking.

Activity-dependent synaptic plasticity in the supraoptic nucleus of the rat hypothalamus.

Activity-dependent long-term synaptic changes were investigated at glutamatergic synapses in the supraoptic nucleus (SON) of the rat hypothalamus. In acute hypothalamic slices, high frequency stimulation (HFS) of afferent fibres caused long-term potentiation (LTP) of the amplitude of AMPA receptor-mediated excitatory postsynaptic currents (EPSCs) recorded with the whole-cell patch-clamp technique. LTP was also obtained in response to membrane depolarization paired with mild afferent stimulation.