Experiences of Children with Fetal Alcohol Spectrum Disorder and Their Families: A Critical Review

Abstract

Evidence suggests that children with fetal alcohol spectrum disorder (FASD) experience challenges across many areas of their daily lives and often require interprofessional supports. Recent studies have emphasized the need for an integrated system of care for children with FASD, incorporating medical, allied health, and education services, to facilitate open communication and support for the complex needs that many children experience. To develop such a system of care, it is important to first understand the impact of FASD on children's functioning during daily activities in different environmental contexts. A critical review of existing research was conducted using a critical interpretive synthesis approach. Results revealed that while many studies discussed impacts at the body functions and structures level of children with FASD, they often did not consider the activity, participation, and environmental factors also contributing to the daily functioning of this population. Several studies discussed caregiver experiences and challenges raising a child with FASD; however, no studies investigated the lived experiences relating to impacts across activities and environments from children's perspectives. In addition, the focus on deficits overshadowed investigation into the strengths of children with FASD, leaving a gap in the picture of their daily lives. Further research is required to determine the strengths that children with FASD demonstrate and the challenges impacting their daily functioning within different environmental contexts. Insights gleaned from such research would support intervention practices to become more holistic and interprofessional.

A shift in perspective on secondary disabilities in fetal alcohol spectrum disorders

“…In the future, longitudinal research should be extended to additional samples, including those at lower environmental risk. As suggested by Skorka et al, (2020), future directions for longitudinal research could include study of lived experiences (perspectives, daily activities, and specific life challenges), and environmental influences that act as pivotal risk or protective factors over time.…”

“…To realize this shift in perspective in a practical way, research is needed assessing daily function among older individuals with FASD, with a focus on how performance of community‐based activities is impacted, how barriers could be removed to optimize environments, and how therapy and other services can be adapted to best support those with FASD in improved function across the full range of settings they encounter. Skorka et al, (2020) make this point and provide guidance on what information is needed. This research team carried out a critical review of existing data on the impact of FASD (and PAE) on child function (ages 5 to 18 years) during daily activities in different environmental contexts.…”

Oral and written communication skills of adolescents with prenatal alcohol exposure (PAE) compared with those with no/low PAE: A systematic review

“…It is not surprising that deficits in communication skills become more severe with age given the increasing social and academic demands as well as fewer parent and teacher supports. Individuals with FASD struggle with the complex language and cognitive skills required to navigate learning and social situations (Duquette et al 2006, Skorka et al 2020. Consequently, the transition from primary to high school as well as from adolescence into young adulthood is particularly problematic (Lynch et al 2017, Skorka et al 2020.…”

“…Individuals with FASD struggle with the complex language and cognitive skills required to navigate learning and social situations (Duquette et al 2006, Skorka et al 2020. Consequently, the transition from primary to high school as well as from adolescence into young adulthood is particularly problematic (Lynch et al 2017, Skorka et al 2020.…”

Alcohol use during pregnancy and fetal alcohol spectrum disorder in Canada: who, what, where?

“…Individuals fre quently have challenges in their daily living and need support with motor skills, physical health, learning, memory, emo tional regulation and social skills. 2,3 Emerging evidence suggests that FASD is also associated with chronic disease and mental health disorders and adverse soci etal experiences. 4,5 When undiagnosed and unsupported, individuals with FASD are more likely to experience substance use challenges, mental health conditions, involvement with the criminal justice and child welfare systems, emotional and physical abuse, trauma and disrupted housing.…”