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'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
- Source :
- Palliative Medicine; Oct2023, Vol. 37 Issue 9, p1289-1302, 14p
- Publication Year :
- 2023
-
Abstract
- Background: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. Aim: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' Design: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence. Data sources: British Nursing Database, CINAHL, Medline, PsycINFO and Embase databases were searched in January 2023. Findings: Relationships between parents and their families and friends, and with professionals influence the needs and experiences of parents, which oscillate between positive and negative experiences, throughout parents' perinatal palliative care journey. Parents highlighted the need for control and a sense of normality relating to their parenting experience. Validation was central to the experience of parents at all stages of parenthood. Relationships between the parent and the baby were unwavering, underpinned with unconditional love. Conclusion: Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication. [ABSTRACT FROM AUTHOR]
- Subjects :
- PARENT attitudes
FAMILY nursing
HOSPICE care
MATERNAL health services
CINAHL database
PSYCHOLOGY information storage & retrieval systems
PRENATAL diagnosis
PSYCHOLOGY of parents
MEDICAL information storage & retrieval systems
CATASTROPHIC illness
FAMILY-centered care
ADVANCE directives (Medical care)
RESEARCH funding
DESCRIPTIVE statistics
DATA analysis software
MEDLINE
PALLIATIVE treatment
FETUS
Subjects
Details
- Language :
- English
- ISSN :
- 02692163
- Volume :
- 37
- Issue :
- 9
- Database :
- Complementary Index
- Journal :
- Palliative Medicine
- Publication Type :
- Academic Journal
- Accession number :
- 172779534
- Full Text :
- https://doi.org/10.1177/02692163231172244