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: Parents play a key role in the transition process of their children. After high school students with intellectual disabilities leave the school system, they need the cooperation of schools and families to ensure successful employment and independent living. Methods: A case study was conducted in a Taiwanese high school special…

Background: Rett syndrome (RTT) causes multiple disabilities with a lifelong need for substantial care, placing a tremendous lifelong responsibility on the parents. Parenting an individual with RTT can therefore be challenging. Research on the psychological aspects of parenting individuals with RTT is limited and unclear. We aimed to identify and…

Background: Parents with intellectual disability experience high rates of child removal, which affects their well-being. Method: Participatory action research (PAR) was undertaken with eight parents with intellectual disability who had children removed from their care. Parents were interviewed before and after the PAR. Three themes emerged: a safe…

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: 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: The affective expression of sexual behaviour in individuals with Williams syndrome can lead to risky behaviours, especially if parents do not have information on how to provide sex education or support from specialised professionals. Method: The Attitudes to Sexuality Questionnaire for Individuals with Intellectual Disabilities was…

Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. Method: A qualitative…

Background: Adolescents and young adults with intellectual and developmental disabilities are at risk of obesity. Parents influence their diet and physical activity behaviours and therefore, can play important roles in weight management. The aims of this qualitative study were to explore parents' experiences assisting their son or daughter to…

Background: There is a lack of evidence to inform the provision of safe hospital care and treatment to children with intellectual disabilities. Methods: Interviews were conducted with 52 parents/carers of 42 children with intellectual disabilities and 98 hospital staff about the care of children with intellectual disabilities during in-patient…

Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient…

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…

Introduction: Children and adolescents with intellectual disabilities participate in low levels of physical activity and have a greater reliance on their parents to provide activity opportunities. This study explored parents' experiences of promoting physical activity for their child with intellectual disabilities. Methods: Semi-structured…

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: 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…