"I'm Doing My Part, I Just Need Help From the Community": Intervention Implications of Foster and Adoptive Parents' Experiences Raising Children and Young Adults With FASD.
Christie L M Petrenko, Michelle E Alto, Andrea R Hart and 2 others
PMID 31079560WHAT IT FOUND
Foster and adoptive parents of children with FASD describe constant monitoring and advocacy as essential for preventing secondary conditions, but note these actions exhaust them.
They report feeling isolated and unsupported by providers who lack knowledge of the condition, creating a cycle of high effort and low community support.
Key findings
01Parents implement protective actions like constant monitoring and structured routines to prevent secondary conditions, but acknowledge these actions significantly increase their own stress and exhaustion.
02A pervasive lack of knowledge about FASD among teachers, health care providers, and community members forces parents into a role of constant advocacy and education, which they describe as a 'fight' against the system.
03Parents report social isolation and stigma, exacerbated by the 'invisible' nature of the disability, which leads to misunderstandings by others and a lack of appropriate support systems.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study is qualitative and cannot measure the effectiveness of any intervention or the prevalence of these experiences in the wider FASD population. Participants were primarily Caucasian and from Upstate New York, which may limit generalizability to other regions or demographic groups. Self-selection of data collection method (interview vs. focus group) may have introduced bias, although results did not differ by method. The sample included families who had been caring for their children for at least a year, so experiences of new foster or adoptive parents may differ.
Declared interests
The authors declare no conflicts of interest. The study was supported by the National Institutes of Health (N.I.H.).
The easy way to misread this
Do not interpret the parents' descriptions of protective actions as evidence that these strategies prevent secondary conditions. The study reports parents' perceptions and experiences; it does not test whether these actions actually improve child outcomes.