Table 3 Description of the final BOOST pACP intervention according to the TIDieR checklist
Timing | Intervention component (n = 10) | Supporting material(s) | Intervention activities, procedures and processes |
|---|---|---|---|
Prior to start of program and approximately every six months | 1. Facilitator selection and training | Facilitator manual outlining all steps of the conversation sessions (including extra follow-up questions for each conversation card) | - Selection of two external facilitators - Preparation of facilitators for the training - Two-and-a-half-day training program for facilitators focused on conversation skills and consisting of theoretical explanation and role plays - Debriefing sessions for facilitators (discussing challenges in case studies) approximately every six months for facilitators (four hours) |
At least one week before conversation session 1 | 2. Preparation booklets for adolescent (2A) and parents (2B) | Separate booklet for parents and adolescent including information about ACP and questions to trigger the thinking process about ACP themes | - Data collectors give preparation booklets to the families that are assigned to the intervention group or send the booklets via e-mail - Adolescent and parent(s) have the option to read their preparation booklet before conversation session 1 takes place |
During conversation session 1 | 3. Short videos of two families talking about their experiences with the intervention | Videos with testimonials of two families talking about their personal situation and experienced effects of the BOOST pACP intervention | - The facilitator introduces the videos that will be shown in conversation session 1 - Adolescent and parent(s) watch the videos during conversation session 1 - The facilitator asks whether the adolescent and parent(s) recognize any aspects from the videos |
One – two weeks after having received the preparation booklets | 4. Conversation session 1 | Facilitator intervention manual and conversation cards | - The facilitator guides the conversation session and introduces the conversation cards to the adolescent and parent(s) |
One – two weeks after conversation session 1 | 5. Conversation session 2a | Facilitator intervention manual and conversation cards | - The facilitator guides the conversation session with the adolescent alone, using the structured conversation guide outlined in the intervention manual and conversation cards. The conversation is tailored to the preferences of the adolescent (e.g., to (not) discuss ACP themes and the order) |
One – two weeks after conversation session 1. Often planned on the same day as session 2a | 6. Conversation session 2b | Facilitator intervention manual and conversation cards | - The facilitator guides the conversation session with the parent(s) alone using the structured conversation guide outlined in the intervention manual and conversation cards. The conversation can be tailored to the preferences of the parent(s) (e.g., to (not) discuss ACP themes and the order) |
One – two weeks after conversation session 2b | 7. Conversation session 3 | Facilitator intervention manual | - The facilitator guides the conversation session with the adolescent and parent(s), using the structured conversation guide outlined in the intervention manual and gives room for them to discuss ACP themes |
During conversation session 3 | 8. Summary sheet | Summary sheet on which the same themes discussed during the conversation sessions are covered. If given permission by the family, the facilitator will send the summary sheet to the paediatric oncologist to include in the patient’s electronic dossier | - The facilitator introduces and explains the summary sheet. The facilitator asks whether the family would like the information they write down to be shared with the paediatric oncologist/medical team |
At the end of conversation session 3 | 9. Conversation cards | Conversation cards that can be used as a game of quartet at home whenever the family members would like to | - The facilitator explains the purpose of the quartet game and that the cards can facilitate communicating on ACP themes together at home in a playful way |
Within one month after conversation session 3 | 10. Transfer of information from ACP facilitator to the paediatric oncologist involved in the care of the adolescent | The summary sheet is used during the transfer of information | - If the family has given permission, the facilitator makes an appointment with the paediatric oncologist involved in the care of the adolescent, indicated by the family - The facilitator gives a summary of the conversations with the family to the paediatric oncologist and asks whether he or she can add the summary sheet to the patient’s electronic dossier |