Electronic supplementary material
What is Known:
• Parents prefer open and honest information about their child’s illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach.
• Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning.
What is New:
• When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past.
• There is “no sharing without caring”. Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings.