Parents of children with intellectual disabilities: Their expectations and experience of genetic counselling

Background Following the birth of a child, parents and other family members have to adapt to their new circumstances. This process takes time and can become more complex when the child is suspected or diagnosed as having intellectual disabilities. When a child has a disability, parents often seek answers as to the origin and nature of the condition as part of the adaptation process. For some parents, this will result in genetic investigations and could lead to the provision of personal genetics about the child and parents. Materials and methods This paper reports a mixed-method project that combined questionnaires prior to and interviews after an appointment with a geneticist. The project sought to identify the expectations and experience of parents who had a child referred to specialist genetics services. Results and conclusions The findings identify that parents felt largely unprepared for their appointment and reported feelings of failing to maximize the opportunity present. The need for more effective liaison between specialist regional and local primary care and learning disability services is also highlighted. Parents made practical suggestions relevant to all the above services about how they could be better supported at this difficult stage in the adaptation process.