Table 2.
Amendments to the intervention based on suggestions from the Research Advisory Group
| PPI RAG suggestion | Amendment based on suggestion |
|---|---|
| Did not like the original ‘MESY’ acronym | Changed the name of the additional epilepsy-specific module to ‘ESMY’ (‘Epilepsy-Specific Module for Youth) |
| Epilepsy-specific content within all of the modules will ensure it is relevant and families will feel it is tailored to them | Included epilepsy-specific examples and modifications throughout the manual |
| Epilepsy treatment is “already in place” and therefore they would prefer if the therapy could start as soon as possible without weeks of epilepsy information at the beginning | Have one session at the start (ESMY) which explores the link between epilepsy and mental health and then begin the mental health treatment |
| After diagnosis—did not know what resources were available, felt overwhelmed with information, many had to teach themselves and collate their own information from a variety of sources |
Created a ‘Frequently Asked Questions’ handout Several amendments were made to this handout based on further discussion and suggestions by the group Created a ‘Roadmap of Resources’ handout. Several amendments were made to this handout based on further discussion and suggestions by the group |
| Helpful to have the therapist consider the positive aspects of the child early on in treatment | Direct quotes from this discussion, i.e. “Epilepsy is not just a medical condition” and “You are not your epilepsy” were incorporated into the therapist script for the assessment session |
| Important to include information on autism and ADHD |
Added autism and ADHD to the ‘special cases’ sections in the manual Included information in the ‘Roadmap of Resources’ |
| Stress is the most important issue to address for parental mental health | Created a parental mental health module and included a progressive muscle relaxation within this |
| Helpful to have information presented in more than one way | Videos were added to supplement the handouts and worksheets |
| Children with epilepsy have many comorbidities so it is important the therapist is able to accommodate for these | Added a section in the therapist user guide which explicitly states that the intervention needs to be tailored to the child and family and provides suggestions on how to do this |
| YP group indicated that anger was a dominant emotion they felt | Included consideration of anger in the ‘Learning to Relax’ module |
| Strong feelings regarding the therapist’s use of terminology (i.e. seizures vs fits) and how they are addressed by the therapist (i.e. mum vs. Ms. Smith) | Created a form for families to complete at the start of therapy giving their preferences regarding terminology, how to be addressed and additional comments |