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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.
- Source :
- Children; Oct2022, Vol. 9 Issue 10, p1555-N.PAG, 16p
- Publication Year :
- 2022
-
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. [ABSTRACT FROM AUTHOR]
- Subjects :
- PARENT attitudes
MATERNAL health services
MOTHERS
GRIEF
PRENATAL diagnosis
SOCIAL support
RESEARCH methodology
FATHERS
INTERVIEWING
RITES & ceremonies
PEDIATRICS
QUALITATIVE research
PARENTING
SOUND recordings
DECISION making
RESEARCH funding
ATTITUDES toward pregnancy
NEEDS assessment
JUDGMENT sampling
DATA analysis software
PALLIATIVE treatment
PSYCHOLOGICAL distress
BEREAVEMENT
Subjects
Details
- Language :
- English
- ISSN :
- 22279067
- Volume :
- 9
- Issue :
- 10
- Database :
- Complementary Index
- Journal :
- Children
- Publication Type :
- Academic Journal
- Accession number :
- 159903278
- Full Text :
- https://doi.org/10.3390/children9101555