Lack of care pathways adds to impact on parents of diagnosis of foetal alcohol syndrome in children

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Foetal alcohol syndrome, a neurodevelopmental disorder caused by the use of alcohol during pregnancy. FAS Aware UK
points out that there is are varying estimates of the prevalence of the disorder, but is thought to have a prevalence of around 1 in 1000.

The researchers in this study were interested in finding out about the experience of parents of children with such a diagnosis and point out that when parents learn of a child’s disability, this can be a difficult time, but that this is compounded when there is uncertainty about prognosis and the services that may be available to support them and their child in the future.

As the authors point out, foetal alcohol syndrome is a preventable cause of learning disability but is found to be prevalent in all developing countries.

They focused on understanding of the psychosocial aspects of the impact of this disorder on parents, which they believe is important to ensure well-informed support can be provided for families.

Families shared their experiences of raising a child with foetal alcohol syndrome with the researchers, who used interpretative phenomenological analysis to identify the key themes which included difficulties in understanding the nature of the problems they would face and the difficulty they found in getting appropriate support because of a lack of developed strategies and care pathways.

Raising a child with foetal alcohol syndrome: hearing the parent voice, Whitehurst, T., in British Journal of Learning Disabilities, 40: 187–193.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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