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Lived Experiences of Adoptive Parents Raising Children with Fetal Alcohol Spectrum Disorders in Israel: A Qualitative
Natalia Zwilling1, Liat Hen-Herbst2, Liat Korn1
1Department of Health Systems Management, Faculty of Health Sciences, Ariel University, 3 Kiryat Hamada St., Ariel 40700, Israel.
Insights
Adoptive parents raising children with Fetal Alcohol Spectrum Disorders (FASDs) face significant daily challenges due to neurodevelopmental issues and systemic barriers. Improved professional training and coordinated services are crucial for better family support.
Area of Science:
- Neuroscience
- Psychology
- Social Sciences
Background:
- Fetal Alcohol Spectrum Disorders (FASDs) are lifelong neurodevelopmental conditions.
- High FASD rates exist in adoptive populations, yet parental experiences in Israel are understudied.
- Limited professional awareness and underdiagnosis of FASD persist in Israel.
Purpose of the Study:
- To explore the daily challenges, coping strategies, and service barriers for adoptive parents raising children with FASD in Israel.
- To understand the lived experiences of adoptive families affected by FASD within the Israeli context.
- To identify unmet needs and recommendations for improving support systems for these families.
Main Methods:
- Qualitative, exploratory study utilizing semi-structured interviews.
- 12 adoptive parents of children (aged 9-18) with parent-reported clinical FASD diagnosis participated.
- Reflexive thematic analysis was employed to analyze interview data.
Main Results:
- Identified five key themes: neurodevelopmental/behavioral challenges, caregiving burden, systemic barriers (diagnostic and knowledge gaps), coping strategies, and unmet needs.
- Parents reported fluctuating child functioning and chronic caregiving demands.
- Significant gaps in diagnostic and educational support were highlighted.
Conclusions:
- Adoptive parents of children with FASD encounter substantial daily challenges exacerbated by systemic limitations.
- There is a critical need for enhanced professional training, streamlined diagnostic pathways, and FASD-informed educational practices.
- Findings inform policy and service development for improved support for families affected by FASD.
Abstract:
Background: Fetal alcohol spectrum disorders (FASDs) are lifelong neurodevelopmental conditions resulting from prenatal alcohol exposure. Despite high FASD rates in high-risk adoptive populations, little is known about the experiences of adoptive parents in Israel, where underdiagnosis and limited professional awareness persist. Drawing on ecological and family systems theory, this study explored the daily challenges, coping strategies, and service-related barriers encountered by adoptive parents raising children with FASD. Methods: Using a qualitative, exploratory design, semi-structured interviews were conducted with 12 adoptive parents of children aged 9-18 years with a parent-reported clinical diagnosis of FASD made by a healthcare professional. The interviews focused on child-related difficulties, coping mechanisms, diagnostic experiences, and interactions with health, education, and welfare systems. The data were analysed using reflexive thematic analysis. Results: Five themes were identified: (a) child-related neurodevelopmental and behavioral challenges, (b) emotional and practical caregiving burden, (c) systemic barriers, including limited professional knowledge and fragmented diagnostic pathways, (d) coping strategies and family strengths, and (e) unmet needs and recommendations. Parents described fluctuating child functioning, chronic caregiving demands, and significant gaps in diagnostic and educational support. Conclusions: Adoptive parents raising children with FASD face substantial daily challenges compounded by systemic limitations. This study's findings underscore the need for improved professional training, clearer diagnostic pathways, FASD-informed educational practices, and coordinated multidisciplinary services. These results provide direction for policy and service development to improve support for families affected by FASD.
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