Lessons from Canada: Supporting families caring for children with Fetal Alcohol Spectrum Disorders

This presentation will describe the perceptions of successful family caregivers of six to eighteen year old children diagnosed with a Fetal Alcohol Spectrum Disorder, regarding facilitating factors and barriers in their households, extended families, neighbourhoods, faith institutions, mutual aid organizations, service systems (social services, health services, education), and in the public and system policy domains. The data are from a qualitative study of 28 caregivers from 19 adoptive and birth families nominated as successful by service providers, using a set of criteria developed by an advisory committee composed of caregivers and professionals.

Findings included the following:

• Facilitation from social work and health care providers related to positive attitudes, specialized knowledge, availability, and an orientation towards supporting the whole family, validation of caregivers, provision of information and high valuation of affected children.

• Public health social workers can support kin caregiving by facilitating strategies parents identified as effective, including creating structured social environments, designing low stimulation physical environments, providing support, effective communication, behaviour modification approaches, appropriate caregiver expectations, and targeted change in the external environment as effective strategies.

• Support of mutual aid organizations constitutes another strategy to facilitate family caregiving. They provide experiential information and affective and cognitive support, but many caregivers were not involved with them.

o Public health caregivers also can act to lower policy barriers related to the lack of integration of the overall service system, as well as by advocating to decrease barriers in the taxation, health care, social services, and educational systems.