Date Presented 03/28/20
This qualitative study explored the converging and diverging needs of biological and adoptive parents raising young children with or at risk for fetal alcohol spectrum disorders. Findings from this study advocate for early interventions that prioritize and promote social-emotional development of young children, are family-centered, and provide concrete assistance for family circumstances and parent well-being.
Primary Author and Speaker: Misty Pruner
Contributing Authors: Tracy Jirikowic, Kathryn Yorkston, Heather Carmichael Olson
PURPOSE: The developmental outcomes and life course trajectories of children with or at-risk for fetal alcohol spectrum disorders (FASD) are optimized when individual and family needs are met by early intervention (EI) provided by those with specific training on FASD. However, little is known about access to and quality of EI services with this population. The purpose of the study is to explore lived experiences of parents during their child’s first three years of life, specifically to: a) identify characteristics of EI practice that are both supportive and challenging for parents; b) identify gaps within the current EI system of care; and c) inform the training and competency needs for EI providers working with this population.
DESIGN: Twenty-five biological or adoptive parents of children with or at high risk for FASD participated in this qualitative study. Participants were recruited from three settings, including a local EI agency, a family support group and a pregnant and parenting women (PPW) residential treatment program. A phenomenological approach was used to gather the lived experiences of parents during their child’s first three years of life.
METHOD: 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 themes that showed differences among participant experiences.
RESULTS: 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: 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. 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.
References
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