Publication
Advance care planning and informed consent in neonatology: A qualitative study on family and health care professional experiences
De Panfilis L, Balestri E, Ciccarelli E, Nuccini F, Paterlini M, Perin M, Gargano G · Palliative Medicine · 2021
Background: The most commons situations of neonatal palliative care setting are 1) perinatal palliative care (do not reanimate order) and neonatal palliative care (limitations of intensive care). In this setting, Pediatric palliative care (PPC) has to adapt both to biological, relational and clinical characteristics of patients and new parents' social, ethical and spiritual ones. Developing a Pediatric Advance Care Planning (PACP) at an appropriate time can be defined a clinical and ethical duty. PACP should include an agreed approach to incorporating parents' ethical and cultural beliefs and values into the child care. Our project is aiming at qualitative explore parents and healthcare professionals (HPs) experiences of PACP in Italy, three years after the entry into force of the law on informed consent and advance care planning (L. n.219/2017). Aim(s): To explore parents' meanings and experience with PACP; To explore HPs' experience in proposing and using PACP. Method(s): An inter-disciplinary research group developed a PACP document based on a literature review and the Italian law's ethical and legal principles. Then, HPs have been trained in using PACP document through theoretical lessons and role playing. In the third phase of the study, we will evaluate HPs and parents experience using semi-structured interviews and focus group. Result(s): Between October 2019 and February 2020 we performed 10 hours of training with 12 physicians and 33 nurses working in the neonatology setting. During 2020 three families have been enrolled. Preliminary results of the study show a good response from HPs in terms of participation and appreciation of the training. The study is ongoing and final results will be presented during the congress. Conclusion/Discussion: This study will produce qualitative evidence on PACP in the neonatology setting and represent the basis for developing and implementing a structured program in Italy to apply the law n.219/2017 in practice.
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