FETAL ALCOHOL SPECTRUM DISORDERS (FASD) IN THE CONTEXT OF QUALITY OF LIFE OF THE CHILD AND HIS/HER CAREGIVERS
Petra Mitašíková1*, Barbora Vodičková2
1Dr. PhD., Slovakia, petra.mitasikova@gmail.com
2Dr. PhD., Slovakia, barbora.vodickova@gmail.com
*Corresponding Author
Abstract
The present article defines fetal alcohol spectrum disorders (FASD), describes the aetiology, prevalence, manifestations, and consequences of FASD impacting the quality of life of individuals and their families, diagnostic, intervention approaches, and emphasises prevention. Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term covering a group of congenital neurodevelopmental defects and brain damage resulting from prenatal alcohol exposure (PAE). It is a continuum of bio-psycho-social impacts associated with PAE. There are multiple approaches to diagnosing and treating disorders associated with prenatal alcohol exposure during pregnancy worldwide. All persons with FASD have lifelong cognitive, social, and behavioural difficulties. Individuals with FASD present multidimensional challenges in childhood for parents and caregivers, with an impact on other family members. For this reason, families also need support from society. Evidence-based interventions need to be implemented to support individuals with FASD and their families. Addressing this issue requires a multidisciplinary professional approach. FASD is a costly issue for society, so it is reasonable to invest in significant prevention. Our qualitative research mapped the positive and negative influences on the quality of life of child with FASD and his/her caregivers/parents. We found that the negative aspects affecting the quality of life of the child with FASD and his/her caregivers/parents include: Significant manifestations of behavioural problems of the child with FASD in the school and home environment; Early traumatisation and re-traumatisation of the child with FASD; Disrupted relational bond between the caregiver/parent and the child with FASD and Negative impact of parenting a child with FASD on the mental and physical health of the caregiver/parent. We identified the following positive resources supporting the quality of life of the child with FASD and his/her caregivers/parents: Professional support as one aspect of enhancing the quality of life of the child with FASD and his/her caregivers/parents; Compensating for the learning difficulties of the child with FASD in the home environment; Consciously establishing a secure relational bond between the caregiver/parent and the child with FASD; Alternative teaching approaches to the child with FASD in school as a positive influencing factor. The topic of the quality of life of a child with FASD and his/her caregivers/parents is not sufficiently explored in the Slovak and international context. It is about the interconnected links between the child's situation with FASD himself/herself and the impact on his/her whole ecosystem (home environment, parents, siblings, school and broader community). This study presents pilot data on the quality of life of children diagnosed with FASD and their caregivers/parents in Slovakia. The research was supported by a grant Kega No. 002UK-4/2020 Supporting the child with sensory processing disorder through a multisensory environment.
Keywords: fetal alcohol spectrum disorders (FASD), prenatal alcohol exposure (PAE), quality of life (QoL)
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