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: This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness. Methods: Eligible interventions aimed to improve parenting skills and/or parent-adolescent relationships, adolescent…

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: For many people with intellectual disabilities, the parenting role is inaccessible and/or constrained. This study provides insight into the lived experiences of parents with intellectual disabilities regarding violence and limiting their rights to parenthood in Poland. Method: Twenty-seven parents with intellectual disabilities who…

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: This study evaluated the Step-by-Step Parenting Program (SBSPP) to prepare expectant parents with intellectual disabilities to care for their newborns. Method: Two expectant parents with intellectual disabilities were seen once or twice weekly in their homes for about 2 h over 16 and 20 weeks (21 and 27 sessions), respectively. The key…

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: This paper explores experiences of mothers with intellectual disabilities, with an emphasis on oppressive circumstances and stereotypes that contribute to poorer antenatal and social outcomes for mothers and their children, potentially leading to child removal. Drawing parallels to archetypical figures of Solomon and Medea, we explore…

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: 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: This paper recognises that there has been a long history of research into support for parents with intellectual disabilities in England and a helpful approach to integrating adults with intellectual disabilities in society called "Valuing People." This focus has now faded. Method: The paper draws together findings from three…

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: Many children experience delayed or missed identification of an intellectual disability diagnosis, meaning that key opportunities for early educational intervention may be lost. Methods: Semi-structured interviews were used to explore the views of teachers, parents, and clinicians (n = 22), about the use of the Child and Adolescent…