PPI Work stream

PPI panel involvement is led by Dr Vicky Slonims and recruitment was finalised in July 2014. The panels met for the first time in September 2014. The panels consist of two groups; 6 parents of children with ASDs, and 5 adults with ASDs. There have been 3 meetings so far.

The first meeting covered roles and responsibilities. Decisions were made about how we contact each other and finances. Professor Simonoff presented a description of the study, with discussion of terminology, outcomes of the study, dissemination and the title of the study. Both PPI groups agreed on the title of the study; IAMHealth. Following the meeting a private Facebook group was created for each panel so that the programme administrator could share documents, minutes, verbatim notes, and request comments and feedback. This also allowed for discussion amongst the groups. Through this channel the groups were sent examples of different logos and they made comments which were passed back to the team which informed the choice of logo.

At the second meeting the panels provided feedback on work package 2, which is conducting interviews with parents, young people and adults with ASD to better understand which problems are most impairing. The group discussed useful mental health terminology and the format of the interviews. They provided instructions and suggestions on how the interviewer could accommodate and modify their questions to help the individual. They were also consulted on the development of Dr Paramala’s questionnaire and were asked how clinicians could best capture responses to the questions. Comments on the title were made which resulted in the questionnaire name being changed from SMART to ACB. Following the meeting, draft versions of the questionnaires and other information were circulated to the PPI groups and many (not all) returned views.

The third meeting discussed the use and purpose of the website. It was decided that a private forum should be created solely for the PPI panels. The programme administrator will share milestone reporting from the researchers with the PPI here, and other documents for PPI discussion. The forum will replace the private Facebook group that was created for the PPI to interact. The PPI requested that rules/guidelines for forum use be drawn up to make sure that contributions to the forum are fair. Vicky Slonims asked the groups what kind of training/accreditation would be useful for them to support their PPI work in the future.

We recruited two representatives (1 adult and 1 parent) who will represent the groups at the Trial Steering Committee.  At this meeting we discussed writing a report about the recruitment and organisation of the groups which could be published.