Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience…

Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions…

This comprehensive study delves into the family quality of life (FQOL) of caregivers in Saudi Arabia, focusing on those caring for individuals with autism, intellectual disabilities, and other disabilities and those without any disabilities. Employing the Arabic version of the Beach Center FQOL Scale, the research encompasses a diverse group of…

This article identified social support and family quality of life in caregivers of children with autism spectrum disorder (ASD) and examined the correlations between the two variables. Survey research was conducted with 165 caregivers of children with ASD in Sichuan province of China using the Social Support Rating Scale and Beach Center Family…

Background: Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and…

Background Individuals with Phelan-McDermid syndrome (PMS) are characterised by phenotypical traits that can be experienced as challenging by their environment. This study assessed parenting stress and Family Quality of Life (FQOL) in parents of individuals with PMS and identified potential contributing variables. Method: Mothers (n = 14) and…

Background: The rollout of the National Disability Insurance Scheme (NDIS) has transformed the Australian funding landscape for individuals with disability and their families. This study examined whether the profiles of autistic children and their families accessing an early intervention (EI) setting have changed following its introduction.…

The objective was to evaluate the impact of a psychoeducational program on the stress and quality of life of parents with a child with autism. In total, 20 parents attended a shortened version (SV group) of the program and 15 others a complete version (CV group). An assessment of perceived stress, parenting stress, and quality of life was…

Family-professional partnerships are a key support for families of children with disabilities, but little is known about families of children with deaf-blindness. This study examined (a) the factor structures of the Beach Center on Disability Family-Professional Partnership and Family Quality of Life (FQOL) Scales utilizing a national sample of…

Family quality of life (FQoL) is considered one of the aims of early intervention (EI) services and a good indicator of service quality. Families were recruited from EI centers in 12 of 17 communities (states) in Spain. This study describes the FQoL of 250 Spanish families with children aged 0 to 6 years in EI services during a family-centered…

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…

This article describes the family quality of life among families who are raising a young child with autism spectrum disorder. Survey research was conducted with 180 families of children with autism spectrum disorder who were receiving disability-related services in the Gauteng province of South Africa. The principle measure used was the Beach…

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…

A scoping review was conducted to identify factors influencing the quality of life of families of children with disability. The review also explored the scales used to measure family quality of life (FQOL) as an outcome in early childhood intervention services (ECIS). Multiple databases were searched from 2000 to 2013 to include studies pertinent…

Early intervention (EI) has been shown to be an essential resource for meeting the needs and priorities of children with intellectual and developmental disability and their families. The objective of this study was to examine (a) the perceived quality of life of families attending EI centers in Spain and (b) its relationship with characteristics…