iHope Autism Solution
One Page Summary
Autism is a serious, lifelong and disabling condition. There are around 700,000 people in the UK living with autism. When family members are included, autism affects the lives of 2.8 million people. Support for parents is limited which can have a profound, sometimes devastating, effect on individuals and families. Increased levels of stress, depression, anxiety, dissatisfaction, fatigue and suicide in mothers of children with autism, compared to mothers of children without a disability are common and adversely impact on parents quality of life, employment and caring ability. Parents often withdraw and become socially isolated as a result of these factors. National research shows that 85% of mothers of children with autism reported having no one to talk to and that only 1% of parents receive positive support from social services. In Coventry and Warwickshire approximately 450 children are diagnosed each year. Carers Trust Heart of England provides emotional support to only 40-50 of these families each year. Many parents are unable to attend the face-to-face support course on offer due to other commitments and would welcome web-based support, which they could access in their own time and convenience.
Our solution - iHope Autism – using an existing web-based platform, will provide the needed emotional and peer support for parents of children with autism resulting in improvement in their quality of life. The iHope platform is a white label self-management platform that we adapt and tailor to suit specific needs and challenges, and supply to other organisations to have their own self-management programme without hassle — there’s no tech infrastructure to buy, set up, or manage. Web content will be adapted from Hope For The Community’s existing face to face hope programme which is a 6 week programme for parents of children with autism and attention deficit hyperactivity disorder. The hope programme combines positive psychology and cognitive behavioural approaches and is delivered by trained parent facilitators. Over 30 face-to-face hope courses have been delivered to 300 parents in Coventry and Warwickshire. An independent evaluation of the face-to-face course has shown that parents report improvements in depression, anxiety, mental wellbeing and hope. Before attending the course 64% and 32% of parents experienced clinical levels of anxiety and depression respectively, which dropped at the end of the course to 30% and 6% respectively (paper submitted for peer review publication). Parents value the peer support and feel less lonely and isolated and more confident and resilient.
The development and delivery of the iHope Autism solution will involve technology providers ( Magic Squares Ltd and Create Onsight) and clinical autism expertise ( Coventry and Warwickshire Partnership Trust). Their roles are described below in section 6.2.
There are other solution providers, including a national organisation, self-management UK (https://www.selfmanagementuk.org/) who provide web-based self-management programmes for people living with and affected by long-term health conditions. However, to our knowledge they do not provide an autism specific solution for parents thus there is a clear gap in the provision of online support for this group.
Our solution uses our tried and tested web-based self management platform. We have existing licensing arrangements with 3 public and third sector organisations, including a local government authority, a profession-specific benevolent society and a national charity. Macmillan Cancer Support licence iHope from us to provide self-management support to people affected by cancer. The evaluation (research paper under review) found that participants’ depression, anxiety, positive mental wellbeing, fatigue, hope and gratitude all significantly improved after the 6 week online course. iHope Autism will customize and integrate modules from the existing face-to-face hope programme to deliver an innovative, interactive web-based solution for parents of children with autism in Coventry and Warwickshire, with the potential to scale nationally and internationally.
Strengths and Weaknesses to Scale-up
The strength of the iHope platform is that it is easily adaptable to support a) other health conditions and b) corporate, health, charity or local authority organisations to equip their staff/clients with the tools to empower people to actively engage in the management of their health and wellbeing and to flourish in their working and personal lives. The current main weakness is the lack of connection with national and international autism and carers organisations. We anticipate that this project will help establish a productive relationship with Carers Trust Heart of England to pursue opportunities to commission the adaption of the iHope platform for other carers groups they support