This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related…

The use of telehealth technologies to provide clinical services to families of children with autism and other developmental disabilities is a rapidly growing area of research. In particular, remote training of caregivers via video conferencing appears to be a promising approach for disseminating behavior-analytic interventions (Neely et al. in…

An increasing number of researchers are examining the benefits and outcomes of caregiver-implemented interventions for young children with delays or disabilities. Most report the incorporation of multiple coaching strategies within their approach; however, definitions and descriptions of coaching strategies and processes continue to be limited.…

Purpose: This article seeks to provide a fresh perspective on the methodological approach to studying caregiving in a transnational context by analysing, local caregiver's lifeworld, informal interpreting/translation and professional communication with foreign retirees. Design/methodology/approach: This project explores the complex and…

This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2 years. Together, we synthesized…

The Caregiver Strain Questionnaire assesses the three dimensions of caregiver strain, namely the objective, subjective externalized and subjective internalized strain. It was validated among caregivers of children with Autism Spectrum Disorder (ASD) in the United States and Mainland China with promising psychometric properties. This study aimed to…

The article reports research aimed at identifying factors relating to retention in English intellectual disability services, drawing on a study of the social care workforce. The research involved two rounds of interviews with social care managers and staff between 2009 and 2014. The study uses social exchange theory, particularly the idea of…

Using unique data from an economically and racially diverse sample of 448 caregivers with young children (ages 4-9 years) in Ohio, we assess multiple sources of family social and economic disruptions and their associations with parenting activities during the COVID-19 stay-at-home order. Caregivers reported extensive social and economic challenges…

This study explored the daily routines of caregivers and the coping behaviors of both children and caregivers during the novel coronavirus (COVID-19) global pandemic. We collected data from ten caregivers and their children through caregiver and child interviews, and a caregiver survey in the Summer of 2020. We used descriptive statistics, and…

Historically caregivers of individuals with disabilities have engaged in individual (for their children) and systemic advocacy (for others). Although it is widely known that caregivers advocate for their school-aged children with disabilities, little is known about how caregivers who have infants and toddlers (birth to three years old) with delays…

Individuals with autism spectrum disorder (ASD) experience behavioral and emotional symptoms hypothesized to arise from "emotion dysregulation" (ED), difficulty modulating emotional experience, expression, and intensity in an acceptable and contextually appropriate manner. We developed Regulating Together (RT)--an intensive-outpatient,…

This paper provides novel evidence on how a sharp increase in labor force participation among older women affects the provision of informal care to their older parents. Based on data from Understanding Society -- The UK Household Longitudinal Study, we use an instrumental variable approach that exploits a unique reform that increased the female…

Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of…

We conducted formative research to inform the creation of innovative new tools and strategies to engage professionals in communicating with youth with intellectual disabilities about sexual health. The research was guided by a multidisciplinary network of experts and an advisory board of self-advocates with intellectual disabilities and caregivers…

Caregiver coaching is a recommended practice in early intervention; however, many barriers exist that can prevent early interventionists (EIs) from implementing it. This mixed method study was designed to understand if EIs' perceived use of caregiver coaching changed after Illinois' COVID-19 pandemic stay-at-home order. Questionnaire data and…