Exploring the experiences of Reunionese families with children who have Down Syndrome
Qualitative Exploratory Study Among Reunionese Women and Their Partners Who Have a Child With Trisomy 21
Centre Hospitalier Universitaire de la Réunion · NCT04811534
This study looks at why families in Reunion Island choose to continue their pregnancies after learning their baby has Down Syndrome, hoping to understand their cultural and social reasons.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 30 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Centre Hospitalier Universitaire de la Réunion (other) |
| Locations | 2 sites (Saint-Denis and 1 other locations) |
| Trial ID | NCT04811534 on ClinicalTrials.gov |
What this trial studies
This observational study aims to qualitatively explore the reasons why Reunionese women and their partners choose not to undergo medical termination of pregnancy (MToP) following prenatal diagnosis of Down Syndrome. By conducting interviews with parents of children born with Down Syndrome since January 1, 2019, the study seeks to understand local cultural and social factors influencing these decisions. The research is set in Reunion Island, where the prevalence of Down Syndrome is notably high among live births despite organized prenatal diagnosis. The findings may provide insights into the unique context of this population and inform future healthcare practices.
Who should consider this trial
Good fit: Ideal candidates for this study are parents of children born with Down Syndrome in Reunion Island who can communicate in French or Creole.
Not a fit: Patients who have not had a child with Down Syndrome or those who do not meet the inclusion criteria will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of parental decision-making processes regarding Down Syndrome, potentially leading to improved support and resources for affected families.
How similar studies have performed: While qualitative studies on parental decision-making in similar contexts exist, this specific exploration in Reunion Island is novel and has not been previously conducted.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Parents: * of a child born alive with Down Syndrome as of January 1, 2019 and registered within REMACOR * living on the island of Reunion at the time of birth * having a good understanding of French and/or Creole * having given their written consent to the study Exclusion Criteria: Parents: * with normal/negative prenatal screening (False positive) * minors at the time of inclusion * under guardianship or legal protection * with a pathology preventing the interviews from taking place
Where this trial is running
Saint-Denis and 1 other locations
- CHU de la Réunion — Saint-Denis, Réunion (RECRUITING)
- CHU de la Réunion — Saint-Pierre, Réunion (RECRUITING)
Study contacts
- Study coordinator: Hanitra RANDRIANAIVO
- Email: hanitra.randrianaivo@chu-reunion.fr
- Phone: 02 62 35 92 56
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Down Syndrome