Parents’ hope in perinatal and neonatal palliative care: a scoping review

Aline Oliveira Silveira*, Monika Wernet, Larissa Fernandes Franco, Patrícia Luciana Moreira Dias, Zaida Charepe

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death. Objective: To map scientific evidence on parents’ hope in perinatal and neonatal palliative care contexts. Method: a scoping review theoretically grounded on Dufault and Martocchio’s Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies. Results: Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women’s perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents’ ability to formulate realistic goals and meaningful interpersonal relationships, respectively. Conclusion: Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child’s life. Health professionals can manage the family’s hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study. Protocol registration: https://osf.io/u9xr5/.

Original languageEnglish
Article number202
Number of pages11
JournalBMC Palliative Care
Volume22
Issue number1
DOIs
Publication statusPublished - Dec 2023

Keywords

  • Family
  • Hope
  • Neonatal
  • Palliative care
  • Perinatal

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