Objective: Families' experiences of children diagnosed with birth defects vary greatly in navigating care systems and there is no comprehensive national protocol or standards for support and referral processes at birth. This study builds on the results of previous literature examining these variations in access to care. A survey was conducted among providers from across Florida to determine current practices and recommendations for providing information, medical/community referrals, discharge planning, and family-centered care in hospital settings.
Methods: Fifty-four hospital health care providers across Florida completed an online survey for 11 congenital conditions through closed and open-ended responses. Survey questions were based on a literature review that focused on identifying and understanding the current practices related to providing information, support and referrals to families of infants born with birth defects. Analyses included descriptive statistics, and content analysis of the open-ended responses.
Results: Survey respondents identified key personnel, practices, and challenges related to family-centered care in birth hospitals. While information and referral are often provided to the family by the physician or nurse, other health care providers and community agencies also play an important role. Processes for information and referral vary by birth defect; however 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: Through additional resources, staffing, increased communication, education, and coordination between health care providers, families and hospitals improvements can be made in the management of birth defect diagnosis and referrals. Best practices must be agreed upon, operationalized, disseminated, and evaluated so that parents consistently receive sensitive, individualized, timely information and referrals relative to their child's condition.
Keywords: Birth defects; Diagnosis; Family-centered management; Referrals.