Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and…

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: The diagnosis of intellectual disability in children can produce complex grief-related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of…

Background: Post-apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition. Method: We conducted 20 semi-structured interviews with primary caregivers and parents of children with intellectual…

Background: Evidence and awareness of the importance of culturally adapting psychosocial interventions is growing. The aim of this paper is to systematically review studies on cultural adaptations of psychosocial interventions for parents and their children with intellectual disabilities, in low- and middle-income countries. Methods: Studies were…

Background: The study explores the experiences of parents of individuals with autistic spectrum disorders (ASDs), and examines the influences of parent gender and child age on perceived stress, stress and coping, child-rearing involvement, support and information/education accessed. Methods and Materials: Questionnaires assessed general perceived…

Background: This qualitative study discusses family care-giving of children with developmental disabilities in the United Arab Emirates. Findings were reviewed in terms of the influence of culture on gender norms governing parental behaviour and aspirations. Method: An ethnographic approach is used in which parent participants were interviewed…

Background: Sleep problems in children with intellectual disability can be precipitated and maintained by intrinsic and external factors. The present study comprised a qualitative investigation of the experiences of parents of children with Rett syndrome, a neurodevelopmental disorder where sleep disturbance is common. Method: Audio-taped…

Background: Previous research has identified various dimensions of social support that are positively associated with parental well-being. However, most research does not include multiple measures of social support and uses heterogeneous samples in terms of child characteristics such as age and severity of intellectual disability. Methods:…