Shared decision making with parents of children with autism associated with higher satisfaction

few outcome studies found, but personalisation is relatively recent in social work practice

Shared decision making with family carers is clearly espoused in policy in the UK and elsewhere. The researchers in this U.S. study were interested to look at to what extent parents of children with autism spectrum disorder reported being engaged in such shared decision making.

They set out to look at the association between shared decision making here variables:

i. satisfaction with care,
ii. perceived guidance regarding controversial issues in autism spectrum disorder,
iii. perceived assistance navigating the multitude of treatment options.

They developed surveys based on the U.S. Department of Health and Human Service’s Consumer Assessment of Healthcare Providers and Systems survey and sent the questionnaires to 203 parents of children from ages 3 to 18 with autism spectrum disorder diagnoses. They got a very good response rate, with 64% returning completed questionnaires.

They found that the parents of children with autism spectrum disorder did report high levels of shared decision making and reported significantly greater satisfaction with the overall quality of their child’s health care.

They also found that those parents who reported higher levels of shared decision making were also significantly more likely to report receiving guidance on treatment options and controversial issues related to autism spectrum disorder.

The authors conclude that shared decision making was

associated with higher parent satisfaction and improved guidance regarding treatments and controversial issues within primary care for children with autism spectrum disorder.

Shared Decision Making: Improving Care for Children with Autism, Golnik A et al,  in  Intellectual and Developmental Disabilities, 50, 4, 322-331.

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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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