• Konstanze Wiesner, Kerstin Hein, Gian Domenico Borasio, and Monika Führer.
• Center for Pediatric Palliative Care, Dr von Hauner Children's Hospital, LMU University Hospital, LMU Munich, Munich, Germany.
• Palliat Med. 2024 Jun 1; 38 (6): 679688679-688.

BackgroundCaring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce.AimWe aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program.DesignGrounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis.SettingA total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker.ResultsSeveral organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange.ConclusionsPerinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.

21 keywords...

hide…