Goossens L, Beernaert K, Cools F, Roets E, Chambaere K, Dombrecht L. Experiences and challenges in perinatal palliative care: a qualitative study among parents and healthcare providers in regional and tertiary hospitals. BMC Palliat Care. 2025 Dec 11. doi: 10.1186/s12904-025-01939-4.
Abstract
Background: Perinatal palliative care (PPC) is increasingly recognized as an essential component of quality maternity and neonatal care. Despite international calls for structured programs, little is known about how PPC is provided in everyday healthcare systems and how parents and professionals experience it. This study explored PPC practices in Flanders (Belgium), focusing on challenges and opportunities for improving care.
Methods: We conducted a qualitative study using semi-structured face-to-face interviews with healthcare professionals experienced in PPC, and with parents who had lost a child in the perinatal period. A total of 22 healthcare professionals and 18 parents participated. Framework analysis was employed to systematically analyze the interview data. The findings were compared with the results of a recent systematic review which synthesized existing literature and outlined the key components of PPC.
Results: In the absence of a formal PPC team, considerable effort was required to coordinate care and ensure effective information transfer between hospitals and departments. Palliative care training was largely informal, with most learning occurring on the job. In contrast to findings reported in the international literature, interview data revealed that external organizations were frequently and systematically involved in PPC. The recognizability of healthcare providers was identified as a key factor in parental psychosocial support. Parents' expressions of gratitude, respect, and satisfaction were experienced by caregivers as highly supportive. In terms of shared decision-making, several parents expressed a need for clearer explanations of medical scenarios, more directive support from physicians, and early exploration of their preferred decision-making style. Simultaneously, both parents and professionals reported feeling limited by legal constraints. Additional needs included improved communication amongst all involved, greater structural support and infrastructure adapted to palliative care needs.
Conclusions: Both parents and healthcare providers pointed out the need for a multidisciplinary team to coordinate PPC across time and disciplines. Parents expressed more dissatisfaction with communication than with the purely medical aspects of care. The importance of caregiver introductions and role clarity, dedicated PPC training and experienced staff was stressed. A neutral, non-directive approach to decision-making did not suit all parents, underscoring the need to tailor support to individual preferences.
© 2025. The Author(s).
