Adaptation in families raising children with fetal alcohol spectrum disorder. Part I: What has helped

ABSTRACT

Background There is limited research investigating the lived experiences of parents raising children with fetal alcohol spectrum disorder (FASD). The aim of this paper is to use qualitative analysis to identify how parents have adapted to the experience of raising their child with FASD.

Method Eighty-four parents and caregivers of children with FASD in Ontario, Canada, participated in in-depth, semistructured interviews employing a basic interpretive approach.

Results Parents of children with FASD report a number of strategies, supports, and transformational outcomes. Using interpretative phenomenological analysis, 5 themes were identified: understanding FASD and advocating on their child's behalf, day-to-day adaptation, transformational outcomes, as well as the importance of informal and formal supports.

Conclusions Understanding what families do in order to facilitate adaptation is important when assisting families who may not be adapting as successfully. Continued research looking at the family experience of raising a child with a developmental disability, such as FASD, is necessary.

KEYWORDS:

• fetal alcohol spectrum disorder
• families
• adaptation
• disability
• parenting

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The Social Sciences and Humanities Research Council of Canada (SSHRC) [grant number 766-2012-0854], the Laurentian University Research Fund (LURF), and the Consortium National de Formation en Santé have funded part of this research.