Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

• Published in: European journal of pediatrics 2020-09, Vol.179 (9), p.1461-1468
• Main Authors: Fahner, Jurrianne C., Thölking, Thessa W., Rietjens, Judith A. C., van der Heide, Agnes, van Delden, Johannes J. M., Kars, Marijke C.
• Format: Article
• Language: English
• Subjects: Advance directives; Clinical decision making; Medicine; Medicine & Public Health; Original; Original Article; Pediatrics; Qualitative research
• ISSN: 0340-6199; 1432-1076
• DOI: 10.1007/s00431-020-03627-2

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child’s future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child. Conclusion : When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians. 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 encoura