Key points are not available for this paper at this time.
Objectives Effective shared decision-making between parents, healthcare professionals and (where appropriate) children and young people is increasingly evidenced as having a positive impact on both clinical and wider outcomes.1 As part of a review looking into the causes, aggravating factors and potential resolutions of disagreements in the care of critically ill children,2 we found that building relationships between healthcare professionals, patients and their families is an essential pre-requisite to effective shared decision-making. The extent to which relationship-building is valued and facilitated is shaped by departmental culture and the influence of clinical leadership on that culture. Where relationship-building is not prioritised, shared decision-making cannot be consistently put into practice, which can cause or aggravate disagreements about a child's care. Disagreements can have a considerable adverse impact on healthcare professionals, including moral distress,3 and potentially affect medical trainees' willingness to specialise in paediatrics.4 Methods Our methodology focused on synthesising existing evidence and gathering perspectives of people with lived and professional experience, through: Thematic literature review Open call for evidence (3 months) (n=38) Two surveys for healthcare (n=280) and non-clinical professionals (n=20) Two exploratory workshops with healthcare professionals Semi-structured interviews with parent(s) (n=6) Analysis of interview transcripts on the subject undertaken by another organisation (shared with consent) (n=8) Data was analysed, coded thematically and key narratives identified. Results Perceived barriers to relationship-building included: Time: a perception by some healthcare professionals that building relationships is too time-consuming given other time pressures and resource constraints; Consistency/continuity: parents may receive mixed messages as a result of multiple communicators and communication styles; Training: healthcare professionals being taught that there is one 'right way' to achieve 'good communication' (i.e. slow, clear and simple language), instead of tailoring communication style to an individual's needs and circumstances; Information provision: a perception by some parents that they were not given adequate information to meaningfully participate in decision-making, and feeling excluded from important meetings without opportunity to input; and Recognising expertise: some parents' perception that their expertise in their child was not consistently ecognizes as valuable compared to clinical expertise. Conclusion As many barriers to relationship-building can be mitigated by culture and leadership valuing and ecognizesg it, our review report recommends that healthcare professionals in clinical leadership roles should model a team culture which ecognizes and prioritises relationship-building with children and parents as an integral part of providing good holistic care. References Babies, children and young people's experience of healthcare NICE guideline NG204, National Institute for Health and Care Excellence, 2021. Independent review: Disagreements in the care of critically ill children, Nuffield Council on Bioethics, Nuffield Council on Bioethics, 2023. Bell CE, et al. What is the impact of high-profile end-of-life disputes on paediatric intensive care trainees? Archives of Disease in Childhood, 2023. ibid.
Michaux et al. (Tue,) studied this question.