The lived experience of young adults with Fetal Valproate Spectrum Disorder, and the perspective of their parents: A qualitative study.

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.

Managing women who decline HIV testing in pregnancy and their infants? A multidisciplinary team guideline.

OBJECTIVES: The management of women at high risk of HIV infection who repeatedly decline HIV testing in pregnancy is not covered in any national guideline. In Leeds, we had a case which prompted us to consider maternal rights plus our duty of care to the infant once born. METHODS: Leeds has an established HIV and Syphilis in Pregnancy Multidisciplinary Team (MDT). The main issues pertaining to a pregnant woman persistently declining HIV testing were discussed within the MDT: identification of pregnant women declining testing; universal testing versus testing by risk stratification of their infants; calculation of vertical transmission risk; definition of unacceptable risk; timing of the decision to request court authority to test the infant; advanced preparation of court authority request papers. RESULTS: It was decided that an HIV transmission risk > 1 in 1000 justified testing an infant at birth. The MDT decision to request court authority for infant HIV testing would be made at 32-34 weeks of gestation, allowing the court papers to be prepared in advance of delivery. The Leeds Obstetrics and Paediatric Guidelines were reviewed, amended and approved by the Trust Guideline Group, Risk Management team and legal team. These guidelines are outlined within the article. The Neonatal guideline also is accessible via this link: http://nww.lhp.leedsth.nhs.uk/common/guidelines/detail.aspx?ID=177 CONCLUSIONS: If a woman at high risk declines HIV testing in pregnancy, it remains possible to significantly reduce the risk of vertical transmission once the child is born, but the window of opportunity is small. Therefore, it is vital to have pathways already in place to address this prior to delivery.

Improvement is needed in the documentation and HIV testing of children of HIV-positive women.

We assessed our unit's documentation of the HIV status of 146 identifiable existing children of 146 women audited, out of our total cohort of 329 HIV-positive women. For 23 women (16%) there was no documentation of the presence or absence of children. For 81 children of 43 (29%) women the HIV status was unknown. Of these children, at least eight (5.5%) reside in the UK and could be accessed for testing. It is essential that documentation and testing of children of HIV-positive women takes place to prevent potentially fatal late-stage presentations of AIDS and onward transmission of HIV as young people become sexually active.