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

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.

Telehealth Home Monitoring and Postcardiac Surgery for Congenital Heart Disease

“…The REACH intervention was novel for infants with CHD. 12 The telehealth platform performed well, facilitating automated and timely transmission of clinical data between parents and study APNs. This study reveals the feasibility of performing virtual home visits by using widely available telecommunication products in the infant CHD population.…”

Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families

“…Support from the health care team through the use of focused and frequent contact improved health outcomes for medically complex adults (Naylor et al, 2004) and has been evaluated for parents of children with a congenital heart defect (Fleck et al, 2018). mHealth, the use of mobile technologies for health-related information and purposes, is becoming a common strategy for improving self-management in chronic illness populations (Moss et al, 2019).…”

“…Parents report challenges in the immediate posttransplant period of finding a new routine to ensure the child's complex care management plan is followed while also balancing home life, which may include work and other children (Lerret et al, 2014(Lerret et al, , 2017. Support from the health care team through the use of focused and frequent contact improved health outcomes for medically complex adults (Naylor et al, 2004) and has been evaluated for parents of children with a congenital heart defect (Fleck et al, 2018). mHealth, the use of mobile technologies for health-related information and purposes, is becoming a common strategy for improving self-management in chronic illness populations (Moss et al, 2019).…”