Background
Congenital heart defects (CHD) are the leading cause of birth defects in the United States (Gilboa et al., 2016). One in four infants are born with a CHD (Gilboa et al., 2016). Children with CHD can be asymptomatic or present with life-threatening symptoms requiring cardiac surgery within the first few days of life. Advances in medical and surgical treatment for these children have decreased their mortality rate and length of hospital stay (Gilboa et al., 2016). This reduction in length of stay, however, has resulted in caregivers, often parents, being required to take on more responsibilities associated with their child’s diagnosis and treatment. In addition to routine childcare, a caregiver of a child diagnosed with a CHD must be knowledgeable of their child’s diagnosis, treatment plan, nutritional needs, pain management, and how to identify signs of clinical distress (McLellan, 2019). While this information is usually provided to caregivers at the time of the initial diagnosis, the news of the diagnosis can cause caregivers to experience fear, sadness, and stress (McLellan, 2019). These emotional responses result in most caregivers understanding two-thirds of the information provided to them during their child’s hospital stay (McLellan, 2019). A recent policy statement from the American Academy of Pediatrics outlined general guidelines for the care of the child with CHD. These guidelines include providing access and information on medications, caregiver cardiopulmonary resuscitation (CPR) training, references to nutritional algorithms to facilitate nutritional support, and the communication of important information regarding the patient’s diagnosis, completed and planned interventions, and physical metrics (Lantin-Hermoso et al., 2017).
Currently, much of the information provided to caregivers is in the form of papers or pamphlets. While these materials are adequate, they are cumbersome and may be easily misplaced or forgotten. Furthermore, providing information in such fashion is often ineffective for those with low literacy, or those whose primary language is not English (Nápoles & Stewart, 2018). Recent developments in technology have allowed for the expansion of teaching media literacy to address multiple learning styles.
In recent years, internet technologies, such as mobile applications or social media platforms, have transformed patterns of education, communication, and healthcare delivery (Zhao & Zhang, 2017). In particular, social media platforms increase social support and interconnectivity among individuals (Zhao & Zhang, 2017). While there are resources available via online support groups (e.g., Mended Little Hearts; Little Hearts, Inc.), social media platforms carry the risk of disseminating non-credible, potentially erroneous health information. Families have expressed a desire for clinician guidance toward trusted information on the internet (Park, Kim, & Steinhoff, 2016).