Dunja Dreesens

115 3 3.1 3.2 3.3 3.4 (3.5) 3.6 Guideline Palliative care for children The national guideline Palliative care for children was introduced in the summer of 2013. Are you familiar with this guideline? How? - (If yes: can you summarize your opinion of this guideline in two sentences? - What did you find most striking about the guideline? - Do you ever use the guideline? o If yes: which part of the guideline do you use and/or in which situation/ when? §When did you last use the guideline? o If not: why not? An innovation introduced by this guideline is a set of recommendations for the decision-making and organisation process. (Are you familiar with these? (familiar with these elements, which were not mentioned under 3.1)) - If yes: do you use them? Why or why not? - What is your opinion of the inclusion of this type of recommendations in guidelines? We have a number of other examples of how SDM can be improved: - Two decision aids: (1) anticoagulant comparison and (2) step-by-step plan for bone infection - What is your opinion? We have also made reformulated an SDM- recommendation. - What is your opinion? Do you have a preference? And why? Casting a quick glance over a printout of the guideline, what is your first reaction? Form, usefulness, size, colours, number of recommendations, volume, availability in digital format Earlier in the interview, we discussed whether guidelines could contribute to shared decision- making. Your answer at the time:… Did you find this guideline (if known to the interviewee) supportive? If yes: in what way? Can you think of other aids that would have been helpful in this respect? Which aids do you feel could help patients and their parents become more involved in the healthcare process? The final question I’d like to ask you about the guideline Palliative care for children is: has special attention been paid to this guideline on your ward? - If yes: how was the guideline implemented on your ward? o By whom? o How? o When? (> 1x) o What was your opinion? - If no: do you know why not? • Seen? • Read? • Developed? • Implemented? Summary, recommendations, decision chart, brochure for parents, indicators… Situations/moments: prior to, during or after the discussion/multidisciplinary meeting/ consultation, uncertainty, multiple options, no consensus… Tools/training: - Summary chart, flow chart, app, clinical path, decision aid, EPR link - Words such as discuss, consult, ask the opinion of the parents/child, acknowledge their viewpoint - Training, focus group, video (training), trial implementation, peer review (Continued) Appendix 2 - Interview guide (translated into English) Chapter 6