Thank you for your interest in participating in this survey regarding delivering the Early Positive Approaches to Support (E-PAtS) intervention and being part of a potential randomised controlled trial.

This page is designed to provide you with further information about E-PAtS, and the potential for a future randomised controlled trial, before you decide to participate in the following survey.

Please note that completing the survey does not mean you are obligated to participate in this future research. It is only an indication of potential interest.

If you would like to take part in this survey please click on the link at the bottom of this information page or if you would prefer to receive a paper copy, please see the contact information at the bottom of this page.

What is E-PAtS?

E-PAtS stands for Early Positive Approaches to Support. It provides emotional, social and practical support to groups of family caregivers, who have a young child with an intellectual disability (the international term for learning disability as used in the UK), over 8 weeks, to help them look after themselves and help them with their child’s development. E-PAtS has been co-produced between family caregivers and professionals and is always co-facilitated by a caregiver and professional working in partnership.

Evaluating E-PAtS through conducting a randomised controlled trial

We plan to assess the impact of E-PAtS on parents/carers and their children by conducting a randomised controlled trial (RCT). This means that half of the families who agree to take part will receive the programme straight away (intervention group). The other half will carry on as normal but not receive the programme for twelve months (control group) or it may be decided that these families will not receive E-PAtS at all (that is one of the points were are exploring in the current research). Which families receive E-PAtS straight away is decided at random using computer software.

Only those families who are participating in the trial and who have been allocated to the intervention group will be able to access the E-PAtS programme. All participants (intervention and control groups) will be asked to complete questionnaires when they first agree to take part in the trial, and again after 3 and 12 months. These questionnaires enable us to assess whether outcomes are better for families who have received E-PAtS (intervention group) compared with families who have not received it (control group).

How delivery of E-PAtS will work

Families will be referred to the study team by service providers in their local area following a flexible multi-point recruitment method. This will include parents in contact with local and national charitable support organisations, local authority services, special schools and nurseries, after school/weekend services for children with special educational needs and disabilities, parent/family support groups, social media, advertising in the media in local areas, and self-referral.

Programme facilitators are typically employed by third-sector organisations, but E-PAtS has also been delivered in a range of health and social care settings (and could include education settings). Each programme is delivered in pairs by one professional and one parent/family caregiver co-facilitator employed by the organisation specifically to deliver the E-PAtS programme. Facilitators complete a five day training programme and period of supervised practice (between 2 and 3 supervision meetings with the E-PAtS programme trainer during the first facilitation of a programme).

Facilitators typically are required to have prior experience of supporting children with an intellectual disability and/or their families, but are likely to have a variety of professional roles and qualifications. Family carer facilitators are the parent of a child with an intellectual disability. E-PAtS programmes may be delivered in a range of community settings including child development centres, community centres and church halls.

The E-PAtS intervention comprises an individual preparation interview with the facilitator followed by 8 sessions of 2.5 hours each. Once organisations have trained staff and parent facilitators they would be in a position after the research to carry on delivering E-PAtS if they wanted to. No charge is made by the developers of the intervention for ongoing delivery of E-PAtS by organisations.

Completing the Survey

In the following survey, we would specifically like to find information about:

• Whether your organisation would be interested in being a service provider (delivering E-PAtS)
• If your organisation might be happy to do this within a randomised controlled trial

Again this information is just to assess your general level of interest - we are not formally inviting you to take part in a future trial. Therefore, you are not committing to anything at this stage.

For each question, think about the likely response of your organisation – you do not need to respond formally on behalf of them.

Survey

If you would like to take part in this survey online, please click ‘Take part in this survey’

If you would prefer to take part by receiving a paper copy of this survey please contact:

FAO E-PAtS Study
Centre for Trials Research
Cardiff University
4th Floor, Neuadd Meirionnydd
Heath Park
Cardiff, CF14 4YS

Email: E-PAtS@cardiff.ac.uk