Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research.

BACKGROUND

Neonatal palliative care (NPC) represents a deeply emotional and ethically complex experience for families confronting the anticipated or actual loss of an infant. Although the clinical dimensions of NPC are increasingly acknowledged, there remains a lack of comprehensive synthesis regarding how parents perceive and construct meaning from this profoundly distressing journey.

AIM: This study aims to synthesize qualitative evidence on parental experiences during neonatal palliative care, with a focus on their emotional responses, decision-making processes, sources of support, and pathways to adaptation and meaning reconstruction.

DESIGN

This study constituted a systematic review and meta-synthesis of qualitative research.

DATA SOURCES: A comprehensive search was conducted across nine electronic databases from their inception to November 2024, including PubMed, Web of Science, PsycINFO, Embase, CINAHL, CNKI, WanFang Data, VIP, and the Chinese Biomedical Literature Service System. Qualitative studies examining the experiences of parents who received neonatal palliative care were selected for synthesis.

REVIEW

METHODS

Two reviewers independently screened articles, extracted data, and appraised methodological quality using the Joanna Briggs Institute (JBI) checklist. Thematic synthesis was performed using synthesis techniques.

RESULTS

Twelve studies met inclusion criteria. Five overarching themes were identified: parent-infant bonding, decision-making dilemmas, emotional struggles, the role of professional support, and the dynamics of support networks.

CONCLUSION

Parents' experiences in NPC are shaped by profound emotional struggles and the presence or absence of empathic, informative, and respectful communication. Peer and professional support systems play a critical role in facilitating emotional processing and post-traumatic growth. Enhancing communication training and integrating peer support programs into NICU settings may help meet the psychological needs of bereaved parents.