The lived experience of young adults with Fetal Valproate Spectrum Disorder, and the perspective of their parents: A qualitative study.
Epilepsy Behav
; 152: 109680, 2024 Mar.
Article
in En
| MEDLINE
| ID: mdl-38335859
ABSTRACT
BACKGROUND:
While research has investigated the physical and neurodevelopmental consequences following prenatal exposure to valproate, our understanding of individuals with a formal diagnosis of Fetal Valproate Spectrum Disorder (FVSD), particularly in the context of adulthood, remains limited.AIM:
To investigate how symptoms and challenges of FVSD present in adulthood.METHODS:
30 people took part in the study, including 13 young adults aged between 21 and 37 years, 15 mothers, and 2 fathers. In all cases, valproate had been used for the treatment of maternal epilepsy. Data were collected using semi-structured interviews and analysed using thematic analysis.RESULTS:
Six broad themes were identified 1. Health and development, 2. Employment, 3. Daily living and independence, 4. Social skills and relationships, 5. Access to services, and 6. Impact on families. Individuals with FVSD live with an array of physical, mental, and developmental challenges that extend well beyond childhood, significantly altering their life course and that of their families. Challenges in obtaining employment, achieving independent living, and navigating social and romantic relationships become increasingly significant as individuals with FVSD age. Despite their persistent need for support, services for adults with FVSD are either limited or entirely absent. Recommendations from families were provided regarding optimized support systems.CONCLUSION:
This study highlights the lifelong physical, cognitive, emotional, social and behavioural symptoms associated with FVSD. Young adults and their parents desire further research regarding the condition along with improved support and health services in adulthood.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Parents
/
Abnormalities, Drug-Induced
/
Valproic Acid
Type of study:
Guideline
/
Qualitative_research
Limits:
Adult
/
Female
/
Humans
/
Pregnancy
Language:
En
Journal:
Epilepsy Behav
Journal subject:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
Year:
2024
Document type:
Article
Affiliation country:
United kingdom
Country of publication:
United States