Background: All children have the right to express their views about matters affecting them and participate in decision-making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal…

Background: Many parents with learning difficulties face high rates of child welfare intervention and child removal. In contrast to other high-income countries, there has not been any published research on the lives of mothers and fathers with learning difficulties from an Austrian perspective. After presenting an insight into the international…

This paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a…

Background: Children with Down syndrome have an increased risk of serious health conditions, particularly in early childhood. Published guidelines promote the identification and monitoring of health issues and adherence could reduce health inequalities, yet there is limited research about the extent to which health monitoring occurs as…

Background: There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers…

Symptoms of autism spectrum disorder (ASD) are present in children with mucopolysaccharidosis type III (MPS III). Questionnaires measuring the two core domains of ASD (social responsiveness and repetitive behaviour) were completed by N = 17 parents of children with MPS III. Results indicated that scores consistent with ASD were reported by all…

Background: This study aimed to explore the range of emotions experienced by parents in the early years of managing their child's disability, to assess the relevance of the Dual Process Model in understanding these emotions within an adjustment process and to identify the types of support and information perceived by parents as helpful during this…

Background: Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. "Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report"). One group of important…

Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status. The incidence of Down syndrome in Ireland is estimated to be 1 in 546, with approximately 7,000 people with Down syndrome living in Ireland. While some families of individuals with Down syndrome may find it difficult to adapt,…

The Confident Parenting group is a therapeutic group for parents of children with learning disabilities and challenging behaviour, which is informed by the principles of behavioural theory and acceptance and commitment therapy. Parent's experiences of the group were elicited through participation in a large focus group which followed a…

Background: Children and young people with learning disabilities experience high rates of mental health problems. Methods: The present study reviewed the literature on mental health services for children with learning disabilities, to identify known models of service provision and what has been experienced as effective or challenging in providing…

Parents of children with developmental disabilities (autism or intellectual disabilities) are more susceptible to stress and have a greater burden of adversity than other parents. Their well-being and satisfaction greatly depend on the system's response of finding them formal support and the help they need. This study proposes an interpretive…

Seven per cent of individuals with learning disabilities also display challenging behaviour ("Challenging behaviour: analysis and intervention in people with severe intellectual disabilities," 2001, Cambridge, Cambridge University Press), which has an effect on the whole family. Services need to be developed to support and reflect this…

This article draws on a doctoral study carried out across seven counties in England which focused on twelve parents' experiences of carrying out the role of a "suitable person" ("SP") by managing a direct payment for an adult child (living in her/his own home) who has severe learning disabilities, autism and very complex…

This study draws on the first author's doctoral research on the mainstream schooling experiences of young people with autism spectrum disorder (ASD) and their parents in Queensland, Australia. The aims are to share some of the practical strategies that were adapted and developed to engage the young people in the research and to critically reflect…