Background: Existing literature failed to explore the parental expectations and experiences from physiotherapy for children with Down syndrome. Hence, we aimed to validate a semi-structured interview guide to explore parental experiences and expectations from physiotherapy for children with Down syndrome. Methods: A 28-item interview guide was…

Background: Parents' conceptualizations of adulthood for their emerging adults with Down syndrome have the potential to impact the transition planning process as families prepare for life after graduation. Aims: This study aimed to explore parent perceptions of the meaning of adulthood for their emerging adults with Down syndrome. Methods: In this…

Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method: This qualitative study used…

Background: Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to…

Background: People with Down syndrome (DS) are predisposed to challenges with executive functions (EF), which are crucial for adaptive outcomes and academic success. Early interventions targeting EF are therefore critical. The present study analysed Italian data on the acceptability, enjoyability and household implementation of EXPO (EXecutive…

Background: Down Syndrome is the most common genetic disorder associated with intellectual and developmental disabilities. Research to improve health care outcomes in Down Syndrome lags significantly behind other disease categories. Among these reasons are funding, recruitment and availability of research studies being conducted. Methods: We…

Background: Individuals with Down syndrome are known to have high rates of hearing loss, but it is unclear how this impacts their ability to communicate and function in real-world environments. Methods: Sixteen English-speaking and Spanish-speaking mothers of individuals with Down syndrome ages 6-40 years participated in individual,…

Background: Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition. Method: A qualitative study was…

Background: Previous studies have focused mostly on the negative experiences of parents of children with Down syndrome. We aimed to explore both the stressful experiences and coping strategies of parents from a non-Western country. Methods: Twenty-six parents of children aged 8-48 months with Down syndrome were included. Semi-structured interviews…

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social…

Background: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. Method: The present authors conducted…

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support…

Background: Despite the wide documentation of the physical/psychological benefits derived from regular physical activity (PA), high levels of inactivity are reported among people with Down syndrome. Method: Semi-structured interviews were conducted with 13 parents of young people with Down syndrome. Results Three facilitation themes were…

Background: Aspects of daily life have been considered in a population of people with Down syndrome, followed repeatedly from infancy to 21-years old, and again at 30-, 35- and 40-years old. A control sample of non-disabled babies were seen at the same ages. Method: Parents (usually the mothers) and/or carers were interviewed about the people's…

Background: This study explores everyday social competence in the lives of persons with three genetic intellectual disability syndromes. Methods: Using parent reports on the Social and Activity Competence domains of Achenbach's Child Behavior Checklist (CBCL), socially competent behaviours were examined in 58 persons with Williams syndrome, 54…