Building Effective Partnerships with Families in Fetal Alcohol Spectrum Disorders

Pediatricians and other healthcare professionals can play an important role for children and adolescents diagnosed with an FASD through family-centered care that promotes and supports healthy families. Effective partnerships with families require affirmative language, guidance to accurate and timely information, access to community resources, interventions and support services.

Affirmative Language

When a family receives a diagnosis of an FASD for a child, there are often feelings of shame and stigma associated with prenatal alcohol use among questions of how the diagnosis and need for lifelong care will affect the child and family. Pediatricians need to address these issues in a sympathetic, respectful and direct manner. 

Bias and discrimination are well-established social determinants of health. Understanding one’s own biases and gaining skills to engage in conversations about prenatal alcohol use is important. Strive to use language that reduces stigma, accurately reflects science, and promotes evidence-based treatment. When discussing FASDs, the use of nonjudgmental language is key to building alliances with family members.

Pediatricians also can use tools to educate medical home partners about harm-reduction focused language and how to acknowledge and change potential biases. Engage all staff in training, including clinical, administrative, and office personnel. The Screening for Prenatal Exposure Implementation Guide demonstrates the use of non-stigmatizing language when assessing all patients for prenatal alcohol exposure. 

To build alliances with patients and encourage a family’s acceptance of the pediatric medical home for integrated and continuous quality care, pediatricians can use the standard of care, person-first centered language to engage in difficult conversations, particularly those about FASDs.

Resources for Families

Be prepared to support families and answer their questions when delivering a diagnosis of an FASD. Naturally, families will have many questions about the diagnosis and concerns including subsequent medical exams, potential interventions, educational testing, and therapies.

Below are downloadable and ready-to-print handouts for clinicians to share with families and caregivers when a child receives an FASD diagnosis.

The Basics of FASDs: Information for Families to learn about FASDs.

Diagnosing FASDs: What Families Need to Know to help families and caregivers understand the next steps.

ADHD or Fetal Alcohol Spectrum Disorders? for families to understand the different diagnosis for a child who has an FASD and not ADHD.

The ABCs of FASD for families to learn about behavioral health outcomes for children with FASDs.

Follow Up

A diagnosis of an FASD is recognized as a lifelong challenge, with manifestations that will change as the brain matures. Periodic health supervision visits, as recommended by the AAP’s Bright Futures initiative, provide regular opportunities for pediatricians and their staff to reinforce and evaluate ongoing therapeutic interventions, and to assess family dynamics as the child grows and develops. 

Remember, that new questions and needed resources will arise at each developmental stage. Developmental transitions may be particularly difficult for families and need extended conversations and referrals. Even problem-oriented visits unrelated to an FASD allow the staff to check in with the caregivers and be sure that challenges are being met.