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Parents of children with intellectual disabilities: their expectations and experience of genetic counselling
- Authors:
- BARR Owen, MILLAR Rob
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 16(3), September 2003, pp.189-201.
- Publisher:
- Wiley
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. 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. 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.
With the benefit of hindsight: a mother's reflections on raising a child with Down Syndrome
- Authors:
- MAXWELL Virginia, BARR Owen
- Journal article citation:
- Journal of Learning Disabilities, 7(1), March 2003, pp.51-64.
- Publisher:
- Sage
Learning disability services worldwide increasingly recognize people with learning disabilities as family members and aim to provide effective support which facilitates family cohesion. However, some professionals still hold stereotypical views about families within a pathological model and as being 'in need'. This article outlines one mother's reflections on her experience of raising a child with Down Syndrome, how his presence impacted on the family, and how she as a person changed as a result. The focus is on how the mother feels as a person, and how she has grown throughout all the sadness she has had to face. The article may help professionals to understand family life from a mother's perspective when a child has learning disabilities, and to recognize the importance of effective listening, ongoing coordinated support, and learning to work in partnership.