title: What are the responses & needs of mothers of infants diagnosed with congenital heart disease?
abstract: This article addresses the needs of families of newborns with congenital heart disease (CHD). Approximately 40,000 infants are born with a congenital heart defect each year; a large percentage survive due to technological advances in treatment, resulting in an increasing number of families who have a child living with a chronic illness. While both parents are significantly affected by a diagnosis of CHD, much of the available literature discusses the experience of mothers. The mother's experiences after learning her child's diagnosis include grief, loss of her imagined healthy child, lack of knowledge of the disease, anger, and difficulty in caregiving, among other issues. Support and encouragement at the time of diagnosis and throughout each stage of the illness are essential. This article describes various strategies that nurses can use to assist these families through their difficult journey.
authors.affiliation: Intensive Care Nursery, Hospital of the University of Pennsylvania, Philadelphia, PA, USA. upham@nursing.upenn.edu
authors.forename: Megan
authors.initials: M
authors.lastname: Upham
authors.forename: Barbara
authors.initials: B
authors.lastname: Medoff-Cooper
mesh_terms: D000223:Adaptation, Psychological; D005260:Female; D006301:Health Services Needs and Demand; D006330:Heart Defects, Congenital / Q000453:epidemiology / Q000451:nursing* / Q000523:psychology*; D006801:Humans; D007231:Infant, Newborn; D016389:Maternal-Child Nursing / Q000592:standards*; D009034:Mother-Child Relations; D009035:Mothers / Q000193:education / Q000523:psychology*; D024802:Nurse's Role; D009723:Nurse-Patient Relations; D015404:Nursing Methodology Research; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D012944:Social Support; D013997:Time Factors; D014481:United States / Q000453:epidemiology