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61 Following parents’ leads in paediatric care planning: a longitudinal study of clinical conversations

bmjspcare · 2025-09-09 · canonical JSON source

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Aim To examine how specialist paediatric palliative care clinicians facilitate care planning discussions across consultations.Background Care planning is a fundamental yet complex component of paediatric palliative care due to the uncertain trajectories of the patient and the emotional nature of decision-making. Parents indicate a need for support in preparing for care planning and time for decision-making. There is little research evidence, however, to guide clinicians in ways of initiating and promoting these discussions in real-world paediatric palliative care practice.Methods Using Conversation Analytic methods, video-recorded paediatric palliative care consultations from an Australian children’s hospital were examined. Two families were selected, as their care planning discussions occurred over multiple consultations, to analyse how care planning discussions were initiated and developed between families and clinicians across consultations.Results Clinicians used specific practices in consultations to ensure care planning was a collaboratively-led process. These practices included responding to parental cues for readiness, deferring discussions to allow time for decision-making, and connecting current planning conversations to previous discussions in which parents had expressed interest. Over time, clinicians created structured opportunities for parents to articulate their values and preferences. Regarding documentation of these discussions, clinicians adopted the approach of facilitators, and reinforced parental agency.Discussion These findings highlight the importance of a gradual, parent-led approach to care planning in paediatric palliative care. Rather than viewing care planning as a single conversation or documentation task, clinicians facilitated ongoing discussions that evolved in response to parental cues and changing care needs. By positioning themselves as facilitators rather than decision-makers, clinicians reinforced parental agency and supported families in navigating complex and emotionally charged decisions. This study underscores the need for communication strategies that prioritise flexibility, sensitivity, and collaboration in paediatric advance care planning.Unique Contribution This study provides the first longitudinal, real-world analysis of care planning conversations in paediatric palliative care. It provides evidence on how clinicians navigate care planning conversations to foster collaboration and family agency.Implications for Policy and Practice These findings suggest that clinician training could focus on recognising parental readiness cues, ensuring care planning is introduced gradually and paced appropriately to maintaining a flexible, family-led approach. Policies could support continuity of care and multi-disciplinary collaboration to ensure care planning discussions are responsive to family needs and preferences, and remain an ongoing conversation.