Blackwell Scientific Publications

Background: To date, there has been no published comprehensive estimation of costs related to Prader-Willi syndrome (PWS). Our objective was therefore to provide data on the economic burden and health-related quality of life associated with PWS in France in order to raise awareness of the repercussions on individuals suffering from this syndrome and on caregivers as well as on the health and social care systems. Method: A retrospective cross-sectional study was carried out on 51 individuals recruited through the French PWS patient association.

Aims and Objectives: To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI).; Background: Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. Design: A qualitative descriptive design was used.; Methods: A qualitative descriptive study was conducted in accordance with the COREQ guidelines.

Aims and Objectives: To explore the experiences of family carers in the delivery of invasive clinical interventions within community settings. Background: Many young people with intellectual disabilities present with complex health needs and require clinical interventions to sustain life.

Background: Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike.

Background: Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families.

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Background: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals.

Aims and Objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

The purpose of this study was to implement and test an educational intervention aimed at training parents/caregivers and teachers in strategies to support children with verbal communication disabilities (VCDs). We carried out a descriptive observational research conducted in two phases during 2013-2014: a mixed-method diagnosis and intervention development. We used convenience sampling to select the parents/caregivers and teachers of first-to-third graders with VCDs across four public elementary schools in a suburban community in central Mexico.

Background: Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. Methods: A qualitative meta-synthesis was conducted.