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Antenatal Palliative Care

Lethal Fetal Abnormality : the Experience of Pregnancy by Parents Who Have Chosen to Carry to Term With Palliative Care.

Status
Completed
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT03795857
Acronym
SPAN
Enrollment
9
Registered
2019-01-08
Start date
2019-01-14
Completion date
2019-04-11
Last updated
2019-08-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Fetal Anomaly, Fetal Death

Brief summary

In France, according to current legislation, termination of pregnancy could be performed without any upper gestational age limit, if there is a strong probability that the fetus will be affected by a particularly severe and incurable disease. When there is a lethal fetal diagnosis most of parents wish to terminate their pregnancy. However, and despite some medical resistance a few of them do wish to continue pregnancy. In these situations, palliative care seems to be a good way to prepare to welcome the child and surround him until death. The aim of the study is to describe parents' experience for a better understanding and a better care.

Interventions

BEHAVIORALSemi-structured interviews

The purpose of this study is to describe the experience of pregnancy by parents who have chosen to carry to term despite a lethal fetal diagnosis. Therefore, semi-structured interviews will be conducted to explore the links between context, feeling, involvement, decision and actions during pregnancy, whether within the couple or in its environment.

Sponsors

Hospices Civils de Lyon
Lead SponsorOTHER

Study design

Observational model
OTHER
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes

Inclusion criteria

* The woman must be between the ages of 18 and 50 and the adult, * Participants must have received the information and not have objected to participating in the study, * the lethal / adverse short-term prognosis of the fetal pathology must have been confirmed by a committee of experts (CPDPN), * The choice to continue the pregnancy should have been clearly expressed, * The birth of the child should not be older than 24 months. * The child's death must be more than 6 months old (or not have occurred)

Exclusion criteria

* Non-mastery of the French language, * Measure of legal protection of one of the members of the couple (guardianship, trusteeship, ...), * Severe psychiatric or neurological disorders inducing significant cognitive impairment.

Design outcomes

Primary

MeasureTime frameDescription
Description of the pregnancy by parents who have chosen to carry to term despite a lethal fetal diagnosisAbout 1 hour and 30 minutesThe purpose of this study is to describe the experience of pregnancy by parents who have chosen to carry to term despite a lethal fetal diagnosis. Therefore, semi-structured interviews will be conducted to explore the links between context, feeling, involvement, decision and actions during pregnancy, whether within the couple or in its environment.

Countries

France

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026