1. 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.
- Author
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Hein, Kerstin, Flaig, Franziska, Schramm, Annika, Borasio, Gian Domenico, and Führer, Monika
- 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 - 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]
- Published
- 2022
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