Grundlagen peri- und neonataler Palliativversorgung

Garten, Lars

doi:10.1007/978-3-662-58945-8_1

Cited by 1 publication

(2 citation statements)

References 16 publications

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Section: Introductionmentioning

confidence: 99%

“…Perinatal palliative care supports families who choose to continue pregnancy following a life-limiting fetal diagnosis [ 26 , 27 , 28 , 29 , 30 ]. It addresses the perinatal care of pregnant women and the neonatal care of infants [ 27 , 29 ]. Perinatal palliative care has been described as a viable alternative to abortion for families who choose this path [ 28 , 30 , 31 , 32 ].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Hein¹,

Flaig²,

Schramm³

et al. 2022

Children

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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.

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