Families with Fetal Alcohol Spectrum Disorder: exploring adoptive parents' experiences of family well-being

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Balcaen, Lisa
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Fetal Alcohol Spectrum Disorder (FASD) is the leading non-genetic cause of developmental disability in Canada. Many challenges abound at the individual, family and societal levels. Much of the literature cites high quality home and caregiving environments as an important correlate to optimal outcomes for individuals with FASD, however, research is limited on this experience from a family perspective. Eight adoptive parents’ experiences of family well-being, within the context of having a child with FASD in the family, were explored through in-depth semi-structured interviews. Interpretive Phenomenological Analysis (IPA) drew out four superordinate themes each with their collection of sub-ordinate themes describing participants’ experiences of 1) Managing Individuals with FASD; 2) Navigating Family Cohesion; 3) Psychological Warfare; and 4) Experiences of Supports. The Family Adjustment and Adaptation Response Model (FAAR) is used to illustrate how families attribute meanings and adjust to balance demands against capabilities. Findings highlight how this dynamic disability impacts all aspects of family life and has a constant and cumulative effect on families’ well-being. Subjective overall family well-being is less than what participants feel it should be given their capacity. The duality of this experience was evident as families strive to balance their philosophies of family cohesion with the logistics of managing this complex disability. Hope, community, and parents feeling successful in their efforts seem to have strong connections to well-being. The study contributes to a growing body of FASD research and highlights the importance of a family-centered approach to care. Participant-promoted recommendations for research and practice are outlined.
Fetal Alcohol Spectrum Disorder, FASD, Family, Well-being, Stress, Supports, Family Adjustment and Adaptation Response Model, FAAR, Hope