Rett syndrome is a severe neurodevelopmental disorder that affects about 1 in 10,000 females. Clinical trials of disease modifying therapies are on the rise, but there are few psychometrically sound caregiver-reported outcome measures available to assess treatment benefit. We report on a new caregiver-reported outcome measure, the Rett Caregiver…

This study was conducted to determine the effect of Mindfulness-Based Compassionate Living (MBCL) training given to the informal caregivers of palliative patients on burnout and caregiving burden. A single-blind, randomized, controlled, experimental study was conducted with 54 caregivers of patients admitted to a hospital palliative care unit. The…

There is limited evidence on the imperative role that caregivers play in social-emotional learning development for effective social-emotional learning program implementation despite their crucial influence on childhood development. This doctoral project explored the effects of parent education for two school-based, social-emotional learning…

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…

In recent years, and especially due to COVID-19, a large number of telehealth interventions have been implemented. The large amount of information requires a differential analysis with an emphasis on rurality and the practice of parents/caregivers in the care and attention of children. The objectives of this study were to synthesize the available…

Background: Sensitive responsiveness is an important aspect in affect-regulation of people with severe to profound intellectual disabilities. Aim: This randomized controlled trial evaluated the Attune & Stimulate-checklist, a tool for detecting subtle and idiosyncratic communicative behaviours and responding adequately. Methods: Effects on the…

Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being…

In 2012, the southern African country of Eswatini ratified the United Nation's Convention on the Rights of Persons with Disabilities (CRPD), and in 2013 developed the national disability policy reform documents to implement the CRPD across different domains, including health care. The current study aimed to analyze these policy reform documents…

Background: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. Method: SO athletes (n = 44) and their…

Background: The COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co-designed tool, the COVID Check-in Tool, was introduced as part of a…

We examined the effectiveness of coaching on caregiver implementation of responding to joint attention (RJA) intervention for toddlers with autism. We used a nonconcurrent multiple-baseline across participants single-case research design to examine the relation between coaching practices and caregivers' RJA intervention implementation behaviors.…

Background: Family carers of people with intellectual and developmental disabilities are at increased risk of stress and often face barriers to accessing appropriate supports. Peer support can enhance the effects of well-being interventions, yet research is limited regarding family carers' experiences within peer support roles. Method:…

This study examined the effectiveness of caregiver consultations in caregiver's child's play therapy process through a program evaluation lens. Archival data was used from a counseling clinic located in the central southwestern United States. Quantitative data was collected from caregiver who filled out assessments (PSI-4 and CBCL) about their…

Background: Direct Support Professionals (DSP) work closely with individuals with intellectual and developmental disabilities (I/DD) and can play an important role in helping these individuals get treatment when they are also experiencing mental health concerns (MHC). Methods: We employed a systematic review search techniques to identify 15…

Using games as part of the intervention and support process (sometimes referred to as 'gaming therapy') is an increasingly popular method of supporting autistic youth to develop social competencies and other skills because they are believed to be inherently motivating and fun for youth. Some emerging research has indicated that intervention…