The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism
Authors: Leadbitter Kathy , Harrison Louisa , Langhorne Sophie , Ellis Ceri , Smallman Richard , Pearson Amelia , Hackett Latha , Kroll Leo , Dunkerley Alison , Beach Hilary , Gilbert June , van Gils Amy , Hutton Tessa , Green Jonathan , Bee Penny ,   the REACH-ASD Team
Published: September 2024

Caregivers can experience significant challenges following their child’s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision.

Lay Abstract

What is already known about the topic? Parents and carers face many challenges following their child’s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing. What does this article add? This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child’s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way. Implications for practice, research or policy The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.