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The REACH protocol: an innovative strategy for home management of infants with complex CHD

Published online by Cambridge University Press:  31 May 2018

Desiree A. Fleck*
Affiliation:
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Bradley S. Marino
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
John M. Costello
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Chitra Ravishankar
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Deborah Torowicz
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Carrie Alden
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Kathleen Van’t Hof
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Barbara Medoff-Cooper
Affiliation:
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
*
Author for correspondence: D. Fleck, PhD, ACNP-BC, CPNP-AC, School of Nursing, Family and Community Health, Claire M Fagin Hall, 418 Curie Boulevard, Room 481, Philadelphia, PA 19104-4217, USA. Tel: 215 833 5584; Fax: 215 898 3056; E-mail: [email protected]

Abstract

Approximately 32,000 infants are born with CHDs each year in the United States of America. Of every 1000 live births, 2.3 require surgical or transcatheter intervention in the first year of life. There are few more stressful times for parents than when their neonate receives a diagnosis of complex CHD requiring surgery. The stress of caring for these infants is often unrelenting and may last for weeks, months, and often years, placing parents at risk for developing post-traumatic stress disorder, as well as a drastic decrease in quality of life. Anxiety often peaks in the days and weeks after discharge from the hospital as families no longer have immediate access to nursing and medical staff. The purpose of this paper is to describe the methods of a randomised controlled trial that was designed to determine whether REACH would favourably affect parental and infant outcomes by decreasing parental stress, improve parental quality of life, increase infant stability, and decrease resource utilisation in infants with complex CHD.

Type
Original Articles
Copyright
© Cambridge University Press 2018 

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