Table 1 Preliminary Parent Advisory Board (PAB) workshop topics to inform the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial
Workshop | Main topic | Subtopics |
|---|---|---|
Phase: Managing and undertaking | ||
1 | Introduction to the CHANGE trial and the PAB | Introduction to the CHANGE trial Introduction to public contribution in research Expectation setting PAB preference concerning PAB structure PAB preference concerning PAB location PAB preference concerning workshop structure Clarifying roles and responsibilities |
2 | Recruitment, retention, participant information sheets, participant invitations | Recruitment and retention procedures Recruitment advertisements Written material Participant invitation letter Participant information sheet Paper reply slip to register interest Paper reply slip to opt-out Reasons for non-participation questionnaire |
3 | Outcome measures and measurements | Clinical outcomes and measurements Health economic outcomes and measurements Sociodemographic and clinical factors and measurements |
4 | Interview material | Reasons for non-participation topic guide Post-treatment semi-structured interview topic guide |
Ethical considerations | Privacy Identity protection Sensitive information and how to mitigate them | |
Phase: Data analysis and interpretation | ||
5 | Reasons for non-participation | Analysis of reasons for non-participation in the CHANGE trial and sense-making and interpretation of results |
6 | CHANGE trial-results—clinical efficacy and cost effectiveness | Analysis of results from the CHANGE trial and sense-making and interpretation of results |
7 | Acceptability of EJDeR | Analysis of results regarding the acceptability of EJDeR and sense-making and interpretation of results |
Phase: Dissemination | ||
8 | Dissemination plan | Development of a dissemination plan e.g., outside of academia |
Plain language summaries | Development of plain language summaries of results in Swedish and English | |