title: Insights from parents about caring for a child with birth defects.
abstract: Birth defects affect 1 in 33 babies. Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges and desire to make life better for their kids. They also want to help to prevent birth defects in the future. Some of the challenges parents face involve communication with healthcare professionals, quality of life issues, creating awareness and advocating for research and funding, finding resources and support, and helping teens transition to appropriate, specialized adult care. This paper addresses these issues and their sub-issues, provides examples, and makes suggestions for improvement and research.
authors: NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA. jodi.lemacks@mendedlittlehearts.org
authors: Jodi
authors: J
authors: Lemacks
authors: Kristin
authors: K
authors: Fowles
authors: Amanda
authors: A
authors: Mateus
authors: Kayte
authors: K
authors: Thomas
mesh_terms: D000328:Adult; D002648:Child; D002654:Child Care; D002668:Child Rearing; D003142:Communication; D000013:Congenital Abnormalities / Q000517:prevention & control / Q000523:psychology; D005260:Female; D006282:Health Personnel; D006801:Humans; D007223:Infant; D007224:Infant Care; D033181:Information Dissemination; D008297:Male; D016487:Parenting; D010290:Parents / Q000523:psychology; D011369:Professional-Patient Relations; D011788:Quality of Life; D012657:Self-Help Groups; D012944:Social Support; D060305:Transition to Adult Care
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