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Contact Information:

Prof Penny Cook
+44 (0)161 295 2804
p.a.cook@salford.ac.uk


Prof Raja Mukherjee
None provided
Raja.Mukherjee@sabp.nhs.uk


More information about this study, what is involved and how to take part can be found on the study website.

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Be Part of Research - Trial Details - A parenting course to reduce behavioural difficulties and improve the quality of life for families of those diagnosed with fetal alcohol spectrum disorders
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A parenting course to reduce behavioural difficulties and improve the quality of life for families of those diagnosed with fetal alcohol spectrum disorders

Not Recruiting

Open to: All Genders

Age: Adult

Salford Banbury Redhill

Medical Conditions

Stress reduction in families diagnosed with fetal alcohol spectrum disorder

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


Fetal alcohol spectrum disorder (FASD) is caused by drinking alcohol during pregnancy. Children with FASD have damage to the brain for the rest of their life. It makes it difficult to communicate, keep friendships, and stay calm and still, among other difficulties. They are more likely to be excluded from school. As grownups, they might suffer from mental ill-health, or get in trouble with the law. New research shows FASD is very common, affecting 2- 4% of children. This makes it more common than autism, but it is underdiagnosed. When a child gets diagnosed with FASD, the parents need help. A parenting course might help, but there is no course specifically for FASD. This makes it difficult for doctors to know what to recommend. Recently, the Department of Health and Social Care said we need “innovative approaches” to support those with FASD. The new National Institute for Health and Clinical Excellence (NICE) Quality Standard on FASD says each child should have a plan that “signposts to resources and services”. Our project fills these needs.

This research aims to test a new parenting course, called SPECIFIC. Experts including parents of people with FASD, charities and clinicians and academics helped us to develop SPECIFIC. We also trained nine families using SPECIFIC. These families helped us to make it better. Families will continue to be involved by helping us to run the project and analyse the data. The hope is that eventually the NHS and charities will be able to deliver the course to thousands of families. Firstly, a smaller test study needs to run called a feasibility test. This will tell us whether it is worth doing a bigger test, called a randomised control trial. This small-scale test will show whether it is easy to get parents to join and complete the programme and if it appears to improve the lives of families.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

01 Oct 2022 29 Feb 2024

SPECIFIC is a seven-week course where families meet online each week. There are two facilitators, one is a trainer and the other is an FASD-experienced parent. We will test SPECIFIC on ten groups of six families and compare findings with families that have not had the course. The families that have not had the course are called a 'control group'. After the course, we will measure the parents’ stress levels and their parenting confidence. As soon as we have done the comparison, the control group will also get the training course.


Parents of children with FASD

You can take part if:



You may not be able to take part if:


For parents:1. Ever previously undergone specialist parenting training for FASD2. Presence of acute safeguarding issues or concerns


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • University of Salford Frederick Road Campus
    University of Salford Allerton Building Frederick Road Campus
    Salford
    M6 6PU
  • FASD Hub Scotland
    Adoption UK Units 11 and 12 Vantage Business Park Bloxham Road Banbury
    Banbury
    OX16 9UX
  • FASD National Clinic
    Gatton Place St Matthews Road
    Redhill
    RH1 1TA

There are possible benefits to participating because the programme is designed to improve the lives of children with FASD and their families, both in the short and long term. It is possible that by taking part in the programme a parent can learn more about the most effective ways to care for children with FASD. The possible risks relate to the fact that some of the issues discussed are potentially upsetting; however, the programme is designed to have a positive focus.

Prof Raja Mukherjee
None provided
Raja.Mukherjee@sabp.nhs.uk


Prof Penny Cook
+44 (0)161 295 2804
p.a.cook@salford.ac.uk



More information about this study, what is involved and how to take part can be found on the study website.


The study is sponsored by Surrey and Borders Partnership NHS Foundation Trust and funded by The Oglesby Charitable Trust; Research for Patient Benefit Programme.



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Read full details for Trial ID: ISRCTN14483801

Or CPMS 53960

Last updated 19 February 2025

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