Family-Centered Antenatal Care With a Life-Limiting Fetal Condition: A Developmental Theory-Guided Approach.

Area of Science:

• Perinatology
• Psychosocial Health
• Genetics

Background:

• Trisomy 18 (T18) is a common autosomal trisomy associated with severe health issues and shortened lifespan.
• Pregnancy with a life-limiting fetal condition like T18 presents unique psychosocial challenges.
• Previous work described psychosocial stages of pregnancy, but requires adaptation for life-limiting conditions.

Purpose of the Study:

• To describe extended psychosocial stages and developmental tasks for pregnancies affected by Trisomy 18.
• To highlight the crucial role of healthcare providers in supporting parents through these stages.
• To empower parents to make value-consistent choices during a T18 pregnancy.

Main Methods:

• Case report detailing a pregnancy with Trisomy 18.
• Extension of existing psychosocial pregnancy stage models (Côté-Arsenault & Denney-Koelsch, based on Rubin).
• Identification and description of 7 key developmental tasks for parents.

Main Results:

• Identified 5 psychosocial stages: Pre-Diagnosis, Learning the Diagnosis, Living With the Diagnosis, Birth and Death, and Post Death.
• Outlined 7 developmental tasks: Navigating Relationships, Comprehending Implications, Revising Goals, Making the Most of Time, Preparing for Birth/Death, Advocating for Baby, Adjusting to Absence.
• Emphasized the impact of knowledgeable providers in facilitating parental decision-making.

Conclusions:

• A structured approach to psychosocial stages and tasks can support parents facing T18.
• Healthcare providers are vital in empowering parents to navigate complex decisions and minimize regret.
• Understanding these stages and tasks improves care for families experiencing life-limiting fetal diagnoses.