There is limited research on caregivers’ experiences of raising children with FASD, and even fewer studies that focus on the lived experiences of individuals with FASD. Providing these individuals with opportunities to voice their perspectives on how they manage the challenges of daily life is important for understanding disability, and ultimately for improving supports and quality of life for individuals with FASD and their loved ones.
The authors of this paper reviewed 18 qualitative studies from Australia, Canada, USA, New Zealand, and UK, that are based on the lived experiences of children and adults affected by FASD, and their caregivers. Caregivers included biological, adoptive, and foster parents.
Children with FASD face challenges on a daily basis, at home and in school, including difficulties with attention and concentration, as well as motor and impulse control. These individuals often experience comorbid conditions such as ADHD, autism, and other mental health problems.
The authors identified three common in the literature, including:
- Challenges experienced by individuals with FASD
- Children with FASD find it difficult to overcome daily challenges stemming from cognitive and mental health issues.
- Children tend to notice that they are different than their peers in aspects such as concentration, motor control, and social interactions.
- Adolescents with FASD often end up in the criminal justice system, as a result of failing to understand consequences of their actions.
- How challenges faced by individuals with FASD are met by others
- Children claim to receive significant support from their parents.
- Adults feel that they receive little support from social services or health care professionals.
- Parents’ experiences of raising children with FASD
- Parents observe challenges faced by their children, including a variety of cognitive and physical limitations.
- Parents experience emotions ranging from joy and pride to family stress and social isolation, and understand the importance of advocating for their child’s future and receiving an early diagnosis.
- Adoptive and foster parents feel that they lack adequate information from social workers regarding the impact of FASD.
Overall, this review indicated that individuals with FASD and their families perceive there to be limited knowledge among health care professionals, educators, and social workers regarding FASD. Further education is needed to equip service providers with a more sufficient understanding of how to support individuals with FASD and their families.
Take-Home Message:
It is promising to see that scientific studies have been done to look at personal experiences of individuals with FASD and their families. However, further research is needed in this area, especially studies that explore the perspective of individuals with FASD.
Article information:
Authors: Helena Domeij, Gunilla Fahlström, Göran Bertilsson, Monica Hultcrantz, Heather Munthe-Kaas, Christina Nehlin Gordh, Gert Helgesson
Journal: Developmental Medicine and Child Neurology
Year: 2018