TY - JOUR
T1 - Parental decision making regarding treatment of hypoplastic left heart syndrome
AU - Ellinger, Marcia K.
AU - Rempel, Gwen R.
PY - 2010/12
Y1 - 2010/12
N2 - Parents of children diagnosed with a complex congenital heart anomaly such as hypoplastic left heart syndrome (HLHS) are faced with the challenge of choosing the best treatment option for their children. Parents must decide among options of compassionate care, palliative reconstructive surgery, or neonatal cardiac transplantation, and additionally with antenatal diagnosis must decide regarding continuation of pregnancy. With improved survival rates yet persistent morbidities following the Norwood surgical approach for HLHS, controversy remains whether parents should be counseled on all treatment options as evidenced by research that articulates the varied opinions of health care providers. The parents' perspective is less well researched. In this study, interview data from parents who chose the Norwood-Sano surgical option were analyzed to provide insight into the various treatment options they were given following diagnosis of HLHS in their children and how they came to choose the surgical palliation option.
AB - Parents of children diagnosed with a complex congenital heart anomaly such as hypoplastic left heart syndrome (HLHS) are faced with the challenge of choosing the best treatment option for their children. Parents must decide among options of compassionate care, palliative reconstructive surgery, or neonatal cardiac transplantation, and additionally with antenatal diagnosis must decide regarding continuation of pregnancy. With improved survival rates yet persistent morbidities following the Norwood surgical approach for HLHS, controversy remains whether parents should be counseled on all treatment options as evidenced by research that articulates the varied opinions of health care providers. The parents' perspective is less well researched. In this study, interview data from parents who chose the Norwood-Sano surgical option were analyzed to provide insight into the various treatment options they were given following diagnosis of HLHS in their children and how they came to choose the surgical palliation option.
KW - Decision making
KW - Hypoplastic left heart syndrome
KW - Norwood surgical approach
KW - Parent
KW - Qualitative research
UR - http://www.scopus.com/inward/record.url?scp=78649925434&partnerID=8YFLogxK
U2 - 10.1097/ANC.0b013e3181fc7c5d
DO - 10.1097/ANC.0b013e3181fc7c5d
M3 - Journal Article
C2 - 21102175
AN - SCOPUS:78649925434
SN - 1536-0903
VL - 10
SP - 316
EP - 322
JO - Advances in Neonatal Care
JF - Advances in Neonatal Care
IS - 6
ER -