Parental Experience in the Single Ventricle Interstage Utilizing a mHealth Innovation: A Comparative Case Study

Background Nearly 2,000 infants with single ventricle cardiac disease are born each year in the United States, and have near certain mortality without surgical intervention. The heart with this congenital disease can never be converted to a four-chambered heart but rather, a palliative three-staged surgical strategy has been designed to maintain both circulation to the body and lungs without a pump. After an initial neonatal surgery, most infants are discharged home and return for a second surgery around six months of life. The time occurring between surgeries is known as the interstage period. This interstage period is very high risk and high demand time for parents, and there is a mortality rate during the interstage ranging from 2-20%, often from unknown reasons.

Hypoplastic left heart syndrome (HLHS) is a specific type of single ventricle disease that is one of the most complex forms of congenital heart disease. Publications have focused on improving the care of infants with HLHS using a Quality Improvement Model with the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) through reduced variation, best practices, and transparency. The concept of interstage home monitoring to reduce mortality also was primarily focused on infants with only HLHS until recently when the focus was made onto comprehensive care from birth to 1 year of age. Hemodynamic data such as oxygen saturation, heart rate, intake, and overall status from a parental perspective were used to promote communication and attempts of early recognition of deterioration in this high-risk population. A strong set of qualitative studies have come from Rempel et al. in Canada on a cross-section of mainly white married parents of infants with HLHS and their parenting experience. Parenting under Pressure and the Facets of parenting a child with HLHS were studies which used the grounded theory approach and provided substantial additions to our knowledge of the interstage HLHS parenting experience. The basis of much of the care for all types of single ventricle cardiac disease at home is found from the care of HLHS and applied to infants with all types of single ventricle anatomy.

Most hospitals with pediatric cardiac surgery programs have interstage home monitoring programs for high risk infants with single ventricle heart disease to provide care and support for infants with all types of single ventricle cardiac disease. Education for caregivers of infants with single ventricle disease include guidelines to call health care providers (HCPs) in cases of hemodynamic interstage concerns, and symptom management questions, based on home monitoring of oxygen saturation and weight gain. There are variations in the staffing structure between pediatric hospitals but the programs often include care coordination and education by a nurse or advanced practice nurse communicating with parents in a reactive model waiting for data to be reported.

mHealth is defined through the National Institutes of Health (NIH) as the use of mobile and wireless devices to improve health outcomes, service, and research. The use of applications is widespread in adult care with estimated 40,000 health-care applications available. Some studies in pediatric medical homes have shown association of mHealth with adherence and self-monitoring to improved outcomes. mHealth innovations like the Cardiac High Acuity Monitoring Program (CHAMP) and other applications work most effectively when caregivers and interstage programs work together to improve care and are a focus of future research from the National Institute of Nursing Research. Much of the recent interstage literature focuses on mortality and weight measures with little focus on expanding types of outcomes to the parental and interstage teams' perspectives and phenomena like infant development.

Recent developments in technology can provide a proactive means for data transfer for home symptom monitoring so the interstage nursing team can review trends and provide proactive monitoring for infants in the interstage. Since 2012, two pilot studies have been published illustrating varying types of mHealth for the interstage with outcomes of improved somatic growth and an improved system of interstage data review but did not show significant mortality improvements. An innovative mHealth technology, CHAMP, was begun in 2014 for interstage home monitoring symptom management and found improved interstage mortality outcomes compared with historical controls. Research gaps remain in the role of adherence in this population to the mHealth technology and the parental experience of utilizing these innovative methods for communication with the clinical team.