The aim of this study was to investigate the oral health status and quality of life (QOL) of the parental caregivers of individuals with Down syndrome (DS), and to evaluate whether there is an association between these variables. The sample of this cross-sectional study was composed by parental caregivers of children with DS (CCDS) and parental…

Background: This study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours. Method: With multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to…

Background: The COVID-19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105)…

Increasingly, lifelong learning is of growing importance and it refers to the constant experiences and needs of individuals adapting to the development of their personal and social skills in relation to the contexts and circumstances in which they are inserted. For this, one of the primary requirements to be able to enjoy a high Quality of Life.…

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…

Disability-related services such as Early Childhood Intervention Services (ECIS) become a part of life for families when there is a child with disability. Many parents give up their everyday occupations such as self-care and paid work to be able to provide long-term caregiving. This Australian study explored parent perspectives of their family…

Self-report measures are widely used for research and clinical assessment of adults with autism spectrum disorder. However, there has been little research examining the convergence of self- and informant-report in this population. This study examined agreement between 40 pairs of adults with autism spectrum disorder and their caregivers on…

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that is expressed quite differently from person to person due to the spectrum of symptoms an individual may experience. Developmentally, children who have ASD manage issues with communication and restricted or repetitive behaviors that impact their activities of daily living and/or…

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic…

Health-related quality of life (HRQOL) is increasingly being considered in the management of patients with various conditions. HRQOL instruments can be broadly classified as generic or disease-specific measures. Several generic HRQOL instruments in different languages have been developed for paediatric populations including the Pediatric Quality…

Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement…

Parents of individuals with autism spectrum disorders (ASD) often experience stressors associated with caring for their child. These stressors can cause considerable distress for families, which at times can develop into full blown crisis, and it is important that professionals be able to quickly identify when families are approaching or are in…

As primary caregivers of children with mental health problems, mothers face challenges that put them at risk for depression, which is rarely identified or addressed. The aims of this paper were to (a) identify mean differences among demographic, stressor, threat, and resource variables specified in a theoretical model and thought to be associated…

The aim of this study was to analyze the agreement between self and proxy reports of quality of life (QoL) in people with intellectual disabilities and to examine the factors which contribute to these differences. The study was conducted across six international centres in a sample of 614 adults with intellectual disabilities as well as two…

Purpose: Assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals. Design and Methods: Scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimer's disease (AD) and their family…