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…

Several conditions related to serious difficulty in initiating and maintaining breastfeeding in neonates with Down syndrome are described in the literature. This study aimed to investigate the frequency of breastfeeding in neonates with Down syndrome, as well as the reasons for not breastfeeding, through a systematic literature review by searching…

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: 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…

Parents of 30 school-age children with Down syndrome participated in a small-scale randomized clinical trial of a behavioral sleep treatment designed specifically for children with Down syndrome. The aim was to improve child sleep, child daytime behavior problems, caregiver sleep, and caregiver stress. The intervention spanned 5-8 weeks, and…

Perceptions of parents of young children receiving early intervention are important to understand. Parents have valuable opinions on the delivery of early interventions services and can provide critical feedback that can help professionals revise their existing early intervention delivery modalities. In the current study, we examined the…

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,…

Parents of children with Down syndrome (DS) were interviewed about if their experiences raising their children matched their initial assumptions about parenting a child with DS. A dominant narrative was identified, wherein most parents described initially having negative assumptions, which did not come to fruition; parenting their child was not…

Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad…

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…

Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this…

Individuals with Down syndrome (DS) experience increased risk of Alzheimer's disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents' perceptions of…