The best possible start: A qualitative study on the experiences of parents of young children with or at risk for fetal alcohol spectrum disorders.
Parents value EI for FASD-risk toddlers but say it skips the social-emotional and respite help they need most.
01Research in Context
What this study did
Pruner et al. (2020) talked to parents of toddlers who have or might have fetal alcohol spectrum disorders (FASD).
The team asked open questions about early-intervention (EI) services and family life.
All interviews happened in Canada and followed a qualitative design.
What they found
Parents liked EI when it fit their child’s unique needs and kept the whole family in mind.
They still felt big gaps in social-emotional help, respite care, basic-needs aid, and clear steps for moving to preschool services.
How this fits with other research
Pei et al. (2017) show that after FASD assessment most families do get school and therapy referrals, yet Misty’s parents still say help is missing. The numbers look good, but lived experience says otherwise.
S-Anthony et al. (2020) prove family quality of life can rise within six months of EI for developmental delay, giving hope that the gaps Misty found can be closed with the right supports.
Reid et al. (2017) already tested a home-based, mindfulness-plus-parent-coaching program for FASD and saw early self-regulation gains, showing one practical way to give the very social-emotional support parents in Misty’s study request.
Why it matters
If you write EI plans for FASD-risk toddlers, add explicit goals for self-regulation and caregiver respite, not only motor or language skills. Use parent-coaching models like Natasha’s that fit the family’s daily routine, and schedule six-month check-ins on family quality of life, not just child milestones.
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02At a glance
03Original abstract
BACKGROUND: The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. METHOD: Twenty-five biological or adoptive parents of children with or at high risk for FASD, living in the greater area of Seattle, Washington participated in this qualitative study. Three focus groups were conducted using a semi-structured interview guide. Participants described their experience with EI, as well as other supports and challenges faced in their child's first three years of life. Interviews were audio recorded, transcribed verbatim and coded using phenomenological methods. Themes that were consistent across participant groups emerged from the data, as well as themes that showed differences among participant experiences. RESULTS: Common EI supports and needs between biological and adoptive parent groups were identified. In addition, perspectives and needs unique to each parent group were revealed. Themes were identified and organized into three categories: (1) child needs; (2) parent needs and priorities; and (3) EI capacity. When parents talked about their child's cognitive, physical, communication or adaptive development, they all discussed how EI was meeting those needs. In contrast, when parents expressed concern for their child's social-emotional development, a description of how EI was supporting these needs was missing from the conversation. Parents appreciated when EI providers were truthful, provided anticipatory guidance, and connected them with supports for their own social-emotional well-being. Yet there were unmet needs for respite care, and parents expressed that support for basic needs related to child or family survival was not consistently recognized as a top priority for families. This high-risk group of young children and their parents also encountered a multitude of transitions in their child's early years and later. Parents wanted more support navigating these transitions as they entered or moved through different systems of care. CONCLUSIONS: Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents.
Research in developmental disabilities, 2020 · doi:10.1016/j.ridd.2019.103558