Dunja Dreesens

114 Appendix 1 – Modified guideline recommendation on pain relief ORIGINAL RECOMMENDATION PALLIATIVE CARE FOR CHILDREN MODIFIED MULTI-OPTION GUIDELINE RECOMMENDATION The first choice in pain relief in the palliative phase is product X with dose A. The first choice in pain relief in the palliative phase is product X with dosage A. After deliberation with the child/parents, you can decide on a lower dosage B or C. Considerations: - Most of the children/parents want to be informed on the side- effects, especially the side-effect drowsiness. (ref. xxxx) - For some children/parents the benefits of pain relief do not outweigh the side-effects (drowsiness of the child). (ref. xxyz) Heterogeneity exists in the preferences of children/parents: 30% choses dose A; 50% choses dose B; and 20% choses dose C. (ref. xyzx) Appendix 2 - Interview guide (translated into English) QUESTIONS PRIMERS, EXAMPLES AND REMINDERS FOR INTERVIEWER 1 1.1 1.2 1.3 Guideline (< 5 minutes) Can you briefly explain what you consider a clinical practice guideline? Do you apply them? When/how do you apply them? Do you find the guidelines beneficial to patient contacts? Why/why not and how? a.k.a. national guidelines, local guidelines, protocols, other? Does the answer clearly reveal the interviewee’s opinion? 2 2.1 2.2 2.3 Decision-making Are you familiar with the practice of shared decision-making (SDM)? - If yes: according to you what does SDM stand for? - If no: read the definition out loud and ask for a reaction. What is your opinion of SDM? Having discussed this, do you believe guidelines offer possibilities for improving SDM among doctors and between doctors and patients? What I mean by this is that a doctor who uses guidelines during consults anyway feels more stimulated, supported or assisted to actively use guidelines. … remain quiet, leave room for explanations, if only yes or no then … If the interviewee gives his/her opinion straight away, follow up by asking what they mean … If the interviewee gives another description, let them read the working definition used in the study and ask for the interviewee’s reaction (Can I summarize your answer as …, for this study we used this definition – what is your reaction?) If yes: how and why? Chapter 6