Dunja Dreesens

106 Main findings Three main findings became apparent when analysing the interviews: - Possibility (or desirability) of CPGs enhancing the practice of SDM; - Added value of integrating SDM in CPGs in general and the PCFC guideline specifically; - Usefulness of a PDA accompanying a guideline. Before describing the main findings, it is important to note that interviewees interpreted the term SDM differently. When asked to describe SDM, half of the participants referred to it as reaching a decision together with other clinicians, e.g. during a (multidisciplinary) team meeting without involving the patient. After providing participants with a commonly used definition of SDM, and briefly discussing the concept, several participants were of the opinion that if there was a clear superior treatment option, the decision should lie with the clinician and there was no need for patient involvement. Almost half of the participants found that patients and/or parents needed to be included only when there was not an obvious best choice (“grey area”), or when decisions were not treatment related, e.g. decisions about where to die or how to say their goodbyes. Furthermore, there seemed to be confusion between sharing decisions and who has the final responsibility for the decisions made. Some participants did not want to burden the patient/parents with the responsibility of deciding on their child’s (end-of-life) care, stating: “The parents have to live with that decision.” (Participant 3). Possibility (or desirability) of CPGs enhancing the practice of SDM When asked if CPGs could potentially enhance SDM, the responses were mixed. About half of the participants mentioned that it could be helpful when there is disagreement; to make sure you cover all the relevant topics, including topics you yourself might consider less important, but are valuable to patients; and to ensure completeness of information provided. Some pediatricians commented that CPGs and SDM do not go together as they regarded CPGs paternalistic in principle and are therefore irreconcilable with SDM. Others thought it could be a good combination (Table 2). Another reason why some participants said that CPGs and SDM do not go together was because they regarded SDM an attitude or skill. A pediatrician is either willing or capable to share decisions with a patient or not, and adding SDM as a recommendation to a guideline will not change that attitude. “It is the difference between ‘the art of medicine’ and ‘medicine’ ” , according to two participants (2 and 12). Several participants commented that to support SDM as a skill, the recommendations in the CPG needed to be more practical. For example: one of the guideline recommendations is to clarify and collaboratively set goals; but no practical guidance is offered on how to do this in clinical practice. Some participants, however, thought that incorporating recommendations on SDM in a CPG, might make it easier to practice it because e.g. it makes it less scary (see Table 2). Chapter 6