A research trial for parents of children recently diagnosed with autism spectrum disorder
What is the REACH-ASD Trial?
The REACH-ASD Trial is a randomised controlled trial of the clinical and cost effectiveness of a new group-based programme for parents of children recently diagnosed with Autism Spectrum Disorder (ASD). The programme, called EMPOWER-ASD, aims to address the important needs of parents in the period following their child’s ASD diagnosis.
The trial is funded by the UK National Institute for Health Research and is run by the University of Manchester in collaboration with Manchester University NHS Foundation Trust, Pennine Care NHS Foundation Trust, and Kings College London.
What is the EMPOWER-ASD programme?
EMPOWER-ASD is an evidence-based group programme which aims to support parents following their child’s ASD diagnosis by offering:
- evidence-based information about ASD and the experiences of being autistic
- understanding about the effects of autism on communication, understanding, sensory experiences, emotional regulation, and behaviour and commonly-used strategies to support these areas of development
- understanding and advice on navigating the education system and other support systems
- time and space for parents to gently reflect upon their feelings about their child’s diagnosis and their experience of being a parent
- psychological strategies (based on Acceptance and Commitment Therapy) to support adjustment and to deal with stress and worries.
The programme consists of five weekly group sessions which last for three hours.
How was the EMPOWER-ASD therapy developed?
The EMPOWER-ASD programme has been developed from existing evidence-based clinical practice within the UK and abroad and through co-production with a range of NHS clinicians, researchers, and experts by experience (parents of autistic children and autistic adults). It is designed to be deliverable within the NHS and aims to address the needs of parents in the months following their child’s ASD diagnosis.
How does the REACH-ASD trial work?
The REACH-ASD trial will be carried out with 330 participants in the Greater Manchester area over a period of three years starting in 2020. Participants will be a nominated parent/primary caregiver of a child aged between 2-15 years who has recently received a diagnosis of ASD.
Parents will meet with an independent researcher at four timepoints over the course of a year. The researcher will visit parents at home and collect information on parental mental health and other measures relating to parent, family and child outcomes. Two-thirds of parents, chosen at random, will be invited to attend an EMPOWER-ASD programme; a third of parents will continue to receive their usual post-diagnostic services. We will analyse whether there are any differences in outcomes between these two groups.
Why is this project important?
Autism spectrum disorder (ASD) is a neurodevelopmental condition affecting over 1% of UK children. Parental responses to the diagnosis are diverse and often multifaceted. Some parents feel relieved that their child’s needs have been formally recognised and understood. Other parents describe worry, shock or sadness. Some parents experience stress about a lack of appropriate support for their child. Many are desperate to understand more about the condition and the best ways to help their child.
Best practice guidelines recommend post-diagnosis family support. However, current provision is patchy across the UK, a source of increasing dissatisfaction for both parents and professionals and, crucially, lacks an evidence base for effectiveness. Most programmes for parents of newly diagnosed children do not directly address parent’s own adjustment and wellbeing. Parental mental health is important in its own right, but also because it is intricately linked to the wellbeing of the whole family and the child with ASD. Post-diagnosis support which offers high-quality and empowering information about ASD and addresses parental mental health and adjustment could therefore bring benefits to the parent and whole family.
There is a pressing need for an evidence-based programme of post-diagnostic support for parents, to equip them with the tools to:
- better understand autism in their child
- support their child’s development and wellbeing
- advocate for their child’s needs
- process their own feelings and response to the diagnosis
- look after themselves in the face of any challenges that arise.
If EMPOWER-ASD is shown to be effective, it will fill a key evidential gap in the provision of efficient and effective phased ASD interventions from diagnosis onwards.
How to make a referral
If you are a clinician within one of our partner centres and you would like to refer someone to this project, please discuss it with that person first and then contact our Trial Manager on Reach-ASD@manchester.ac.uk
We will require consent to contact the person you are referring and may need to ask you some questions to make sure the study is a good fit for them.
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