Integrating care for individuals with FASD: results from a multi-stakeholder symposium.

BACKGROUND: Fetal Alcohol Spectrum Disorder (FASD) has a significant impact on communities and systems such as health, education, justice and social services. FASD is a complex neurodevelopmental disorder that results in permanent disabilities and associated service needs that change across affected individuals' lifespans. There is a degree of interdependency among medical and non-medical providers across these systems that do not frequently meet or plan a coordinated continuum of care. Improving overall care integration will increase provider-specific and system capacity, satisfaction, quality of life and outcomes. METHODS: We conducted a consensus generating symposium comprised of 60 experts from different stakeholder groups: Allied & Mental Health, Education, First Nations & Métis Health, Advocates, Primary Care, Government Health Policy, Regional FASD Coordinators, Social Services, and Youth Justice. Research questions addressed barriers and solutions to integration across systems and group-specific and system-wide research priorities. Solutions and consensus on prioritized lists were generated by combining the Electronic Meeting System approach with a modified 'Nominal Group Technique'. RESULTS: FASD capacity (e.g., training, education, awareness) needs to be increased in both medical and non-medical providers. Outcomes and integration will be improved by implementing: multidisciplinary primary care group practice models, FASD system navigators/advocates, and patient centred medical homes. Electronic medical records that are accessible to multiple medical and non-medical providers are a key tool to enhancing integration and quality. Eligibility criteria for services are a main barrier to integration across systems. There is a need for culturally and community-specific approaches for First Nations communities. CONCLUSIONS: There is a need to better integrate care for individuals and families living with FASD. Primary Care is well positioned to play a central and important role in facilitating and supporting increased integration. Research is needed to better address best practices (e.g., interventions, supports and programs) and long-term individual and family outcomes following a diagnosis of FASD.

A descriptive Study of a Community-Based Home-Visiting Program with Preschool Children Prenatally Exposed to Alcohol.

BACKGROUND: Research suggests that prenatal alcohol exposure (PAE) and Fetal Alcohol Spectrum Disorder (FASD) increases the risk of insecure caregiver-child attachment and related negative child emotional-behavioural outcomes. Research also shows positive effects of attachment-focused interventions in preventing disrupted caregiver-child attachment relationships; however, such interventions have not been specifically adapted for children with FASD. OBJECTIVES: This paper describes the implementation, challenges, and results of a community home-based attachment intervention, Circle of Security® (COS), with preschool children affected by PAE/FASD in Manitoba, Canada. METHODS: Twelve caregiver-child dyads completed the FASD adapted COS intervention. Children's ages ranged from 2-5 years. RESULTS: Results support a positive influence of this individualized intervention on child behaviour and parent efficacy. There was a significant reduction in parent stress that was maintained at 3-month follow-up, and a clinically significant reduction in child behavioural issues was noted. Children showed increased ability to communicate their needs more effectively to their parent. Parents also showed an improvement in their ability to attend to their child's cues. CONCLUSIONS: This study supports the use of community home-based attachment intervention for caregivers of children with PAE/FASD.

Screening and recording of alcohol use among women of child-bearing age and pregnant women.

A woman's alcohol use during pregnancy is one of the top preventable causes of birth defects and developmental disabilities that are known as fetal alcohol spectrum disorders (FASD). The social and economic burden of FASD is substantial. Lifetime direct tangible costs per individual related to health care, education and social services in Canada have been estimated to be $1.4 million. Screening women of child-bearing age and pregnant women and recording their alcohol consumption is a practical process to identify and evaluate women at-risk and to identify potentially exposed infants. The FASD Advisory Workgroup proposes the following three levels of screenings which should be done on consenting women: Level I screening involves practice-based approaches that can be used by health care providers when talking to women about alcohol use, such as motivational interviewing and supportive dialogue. Level II screening includes a number of structured questionnaires that can be used with direct questioning (TLFB) or indirect /masked screening (AUDIT, BMAST / SMAST, CAGE, CRAFFT, T-ACE, TWEAK). Level III screening includes laboratory-based tools that can be used to confirm the presence of a drug, its level of exposure and determine the presence of multiple drugs. There are challenges and limitations in the use of the screening and assessment tools outlined. For example, the single question about alcohol use and the various questionnaires rely on a woman to provide details about her alcohol use. There is no consensus on the appropriate screening to use across Canada as each provincial / territorial jurisdiction, health care organization and healthcare provider uses a variety of formal and informal screening tool. In addition, there are inconsistent processes across Canada for the recording of the alcohol use in a woman's chart and the transfer of the information to the infant and the child's health records. The FASD Advisory Workgroup proposes eleven recommendations to improve the screening and recording processes for alcohol use in women of child-bearing age and pregnant women.