Online Program

Best Practices for Family-Centered Birth Defects Information, Support, and Referral in Birth Hospital Settings

Tuesday, November 3, 2015

Jennifer Marshall, PhD, MPH, Community & Family Health, University of South Florida, Tampa, FL
Loreal Dolar, MS, Department of Community and Family Health, College of Public Health, University of South Florida, Tampa, FL
Russell Kirby, PhD, Maternal and Child Health, University of South Florida, Tampa, FL
Jean Paul Tanner, MPH, Birth Defects Surveillance Program, Department of Community and Family Health, College of Public Health, University of South Florida, Tampa, FL
Chantell Robinson, Department of Community and Family Health, College of Public Health, University of South Florida, Tampa, FL
background:  One in every 33 babies is born with a birth defect, and timely diagnosis and referral can impact health and developmental outcomes. This study builds on the results of previous studies finding that the experiences among families of children diagnosed with birth defects in navigating care systems vary greatly and there is no comprehensive national protocol or standards for support and referral processes at birth.

methods: Hospital health care providers across Florida completed an online survey on family-centered management of birth defect diagnosis and referral for 11 congenital conditions. Through closed- and open-ended responses, respondents were invited to describe their practices and recommendations for provision of information, medical and community referrals, discharge planning, and family-centered care.

results: Preliminary findings from 45 physicians, nurses, geneticists/genetic counselors, social workers, and others who work with newborns diagnosed with birth defects identified key personnel, practices, and challenges related to family-centered care in birth hospitals. While information and referral is often provided to the family by the physician or nurse, genetic counselors, care-coordinators, and community agencies also play an important role. While processes vary by defect, common structures that support family-centered management include written materials for family information and support, participatory discharge planning, interdisciplinary communication and coordination, and provider training/awareness.

conclusion: Additional resources, communication, education, and coordination between health care providers, families, and hospitals will improve management of birth defects diagnosis and referrals.  Best practices must be agreed upon, operationalized, disseminated, and evaluated so that parents consistently receive sensitive, individualized, timely information and referrals.

Learning Areas:

Clinical medicine applied in public health
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs

Learning Objectives:
Explain the importance of family-centered care upon diagnosis of birth defects in the birth hospital setting. Describe current hospital personnel practices for providing information and referrals to families about their child's diagnosis. Discuss recommendations for improved practices in family-centered management of birth defects diagnosis and referral.

Keyword(s): Disabilities, Perinatal Health

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I hold a PhD in Public Health, Community and Family Health, and have conducted numerous mixed methods and community-based studies on birth defects, developmental delays and disabilities towards improving practices and access to care for families of young children with disabilities and special health care needs.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.