The Path Is Made by Walking-Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study.

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Version: Final published version
License: CC BY 4.0
Serval ID
serval:BIB_9AABA5513855
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
The Path Is Made by Walking-Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study.
Journal
Children
Author(s)
Hein K., Flaig F., Schramm A., Borasio G.D., Führer M.
ISSN
2227-9067 (Print)
ISSN-L
2227-9067
Publication state
Published
Issued date
13/10/2022
Peer-reviewed
Oui
Volume
9
Number
10
Pages
1555
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
Abstract
In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña's Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives.
Keywords
bereavement, palliative care, pediatrics, perinatal care, prenatal diagnosis, qualitative research
Pubmed
Web of science
Open Access
Yes
Create date
09/11/2022 9:24
Last modification date
23/01/2024 8:31
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