Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS). Method: Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales. Results:…

Background: Parents with intellectual disability and their children are entitled to adapted support, but practitioners lack knowledge, have scarce access to adapted methods, and work in siloed organisations with limited resources. SUF resource centre was therefore formed, in Region Uppsala, Sweden, to support families headed by parents with…

Introduction: Children with Down Syndrome are more likely to experience sleep issues throughout their life compared to typically developing children. Sleep difficulties also affect caregivers, who are at increased risk of sleep disturbances, mood disturbances and poorer wellbeing. However, the impact of poor sleep in this cohort of children on…

Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study,…

Background: Natural supports are widely used by adults with intellectual and developmental disabilities. However, little research has been conducted on this topic. This study adds to the literature by examining the role of parents as natural supporters, other members of the natural support network, challenges families face as they secure natural…

Background: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. Method: A five-stage scoping review framework was adopted.…

Background: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. Method: We propose a framework where access to EI is…

Background: Early Positive Approaches to Support (E-PAtS) is a co-produced and co-facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities. Method: Thirty-five caregivers who had attended E-PAtS groups took part in individual interviews or focus groups.…

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers…

Background: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers' needs, beliefs and coping mechanisms. Method: This study investigated…

Background: Despite growing interest in the experiences and social barriers experienced by people with intellectual disabilities from ethnic minorities, the specific challenges associated with migration from abroad faced by these individuals and their families have been overlooked. This research focuses on narratives told by Turkish-speaking…

Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…