Background Advance Care Planning promotes end-of-life care conforming to patient wishes. It is recommended for severely ill children, but there is little research on the specific needs and challenges in paediatrics. Adult concepts need to be adapted to the particularities of this setting.
Aim The aim was to assess the needs of health care professionals (HCPs) and parents regarding ACP.
Methods We conducted semi-structured interviews with HCPs from different professions (n = 17) and bereaved parents (n = 10). Participants were selected by purposive sampling. A qualitative content analysis was performed.
Results Both HCPs and parents view ACP as a useful tool. Parents emphasise the importance of honest communication, mutual trust and shared decision-making. They perceive written information helpful, because they can decide what information they can bear at any one time. Everyday life and non-medical end-of-life issues are highly relevant for parents. Written documents were considered less important. However, HCPs emphasise the need for written documents to increase their sense of security, although uncertainties among medical and non-medical HCPs concerning the legal bindingness of these documents lead to problems in practice. A continuous case manager is perceived as a key factor for successful ACP.
Discussion There is a need for ACP in paediatrics. Parents and HCPs have different needs. Challenges include discontinuity of care, uncertainties concerning ACP documents for minors and the high emotional burden for parents.
Conclusion The results of this study may inform the development of paediatric ACP programs. Future research should focus on developing strategies for overcoming the barriers identified.
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