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Table 4 Specification of, and rationale for, the identified intervention components and materials throughout the development process

From: The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility

Intervention components

Rationale/evidence for the component

Illustrative quote

Facilitator

Should be external to the medical team, because the goal is to test the effectiveness of the BOOST pACP intervention in a randomised controlled trial – and otherwise there is a risk of contamination. None of the parents and adolescents we interviewed disliked the idea of discussing ACP themes with a facilitator they do not personally know yet

“We have children in our hospital that have five different treating oncologists. Which of these oncologists should be involved in the intervention and in what way? They don’t have time.” (Healthcare professional 4)

A training program for facilitators

Ongoing training of facilitators is important, both regarding conversation skills and steps necessary for the study. We added at least two debriefing sessions

“An initiation training is important, but it is also essential to provide ‘coaching on the job’ sessions.” (Researchers who developed IMPACT– respondent 1)

Multiple conversations structured by a conversation guide

ACP is a process, tailored to the needs and readiness of parents and adolescent. The conversation guide is therefore not rigid. However, it provides the necessary structure. Four conversations within three months was considered feasible by parents and adolescents. Healthcare professionals doubted whether 60 min per conversation would be sufficient

“You don’t win trust in one conversation and ACP is a process so it’s good you are proposing several conversations.” (International advisory group – respondent 3)

Patient tools (suitable for adolescents)

We added conversation cards to give structure to the conversations. Adolescents and parents liked the idea of using conversation cards and that they are able to decide themselves what themes to discuss or not to discuss. This gave them a structure but at the same time a certain freedom and opportunity to identify their own needs. Optional person-centred exercises for facilitators to use were added in case the adolescents find it difficult to respond to the questions. Conversation cards that can be used as a game of quartet were added to give the family the opportunity to continue ACP communication whenever they want to

“Conversation cards work very well to involve children in a playful way. You get different conversations when using these kinds of tools.” (Healthcare professional—respondent 11)

Documenting the outcomes of the conversations

Introducing an advance directive in the last conversation session would not fit with the goal of improving parent-adolescent communication and the step-by-step approach and broad target group of the intervention. Therefore, the content of the summary sheet matches the content of the conversation sessions

“It is very difficult for parents to put end-of-life preferences on paper in a concrete way. They associate it with giving up and think that nothing will be done to help their child anymore.” (Healthcare professional 7)

Transfer of information

The participants stressed the importance of a link between this external facilitator and the medical team to ensure continuity of care. Responsibility for transferring the information from the ACP conversations should not lie with the families themselves, but should be built into the intervention. If given permission by the family, the summary sheet is sent directly to the paediatric oncologist, and the facilitator has 30 days to plan the transfer of information with the paediatric oncologist

“If your aim is to get a result concerning ACP, you will have to make sure a healthcare professional is involved in some way in your intervention.” (Researchers who developed IMPACT– respondent 2)