This 10-year study followed 134 caregivers of young adults with autism and intellectual disability, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower…

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…

Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…

Background: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. Methods: Nine community agencies…

Background: People with severe to profound intellectual disabilities have particular needs for others to help them regulate stress. Such support may be hampered by difficulties in detecting and interpreting expressions of stress. This study aimed to describe and identify stress-related behaviours and sensitive, stress-regulating responses to these…

Purpose: Family Peer Advocates (FPA) are used in healthcare broadly to facilitate engagement and address disparities in care. We previously reported on the benefit of FPAs in the care of autistic children on caregiver stress. Caregivers of autistic children report significant levels of caregiver stress, in particular when associated with…

Studies on the COVID-19 pandemic highlight detrimental effects of social distancing on mental health. These effects were also observed among caregivers of people with intellectual and developmental disabilities (IDD), who undergo particular challenges in this context. This study aimed to identify the coping strategies adopted by caregivers of…

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…

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…

Background: Long-term care of a relative with a disability is associated with negative consequences on the caregiver's mental health. Therefore, investigating how some personality traits, such as resilience, protect caregivers with dysfunctional personality traits from caregiving stress is necessary. This study examines the moderating role of…

Parents have long been concerned with the transition to adulthood of their children with intellectual and developmental disability (IDD) particularly with financial issues. The purpose of this study was to explore the financial concerns of mothers of adults with IDD. Five mothers of adults with IDD participated in a focus group to share their…

Primary informal caregivers perform most of the caring work with no financial compensation and often no training, experiencing the burden of care. Unless their socioeconomic status allows them to hire a formal caregiver for their care recipients or use healthcare facilities, they need to spend their opportunity cost to take care of their care…

To better understand the impact of children's autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.-wide Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort.…

Purpose: Schizophrenia, a chronic mental disorder, poses enormous threat to the individual, family and society. The advent of deinstitutionalization of the mentally ill transferred the burden of care to families especially close relatives. Few studies have described the families' subjective views in this context. Hence, this study aimed to explore…

Background: Mindfulness interventions have been shown to ameliorate stress in support staff working with people with intellectual disabilities. This review aimed to explore what impact mindfulness interventions for staff have on their care and support behaviours, and on the experiences of people with intellectual disabilities receiving support.…