Acceptability and Initial Adoption of the Heart Observation App for Infants With Congenital Heart Disease: Qualitative Study

Abstract

Background: Approximately 1% of all infants are born with a congenital heart disease (CHD). Internationally CHD remains a major cause of infant death, some of which occur unexpectedly after a gradual deterioration at home. Many parents find it difficult to recognize worsening of symptoms. Objective: This study aims to report the acceptability and initial adoption of a mobile app, the Heart Observation app (HOBS), aiming to support parents’ understanding and management of their child’s condition and to increase quality in follow-up from health care professionals in complex health care services in Norway. Methods: A total of 9 families were interviewed on discharge from the neonatal intensive care unit and after 1 month at home. The infant’s primary nurse, community nurse, and cardiologist were also interviewed regarding their experiences about collaboration with the family. The interviews were analyzed inductively with thematic content analysis. Results: The analysis generated 4 main themes related to acceptability and adoption: (1) Individualize Initial Support, (2) Developing Confidence and Coping, (3) Normalize When Appropriate, and (4) Implementation in a Complex Service Pathway. The receptivity of parents to learn and attend in the intervention differs according to their present situation. Health care professionals emphasized the importance of adapting the introduction and guidance to parents’ receptivity to ensure comprehension, self-efficacy, and thereby acceptance before discharge (Individualize Initial Support). Parents perceived that HOBS served them well and nurtured confidence by teaching them what to be aware of. Health care professionals reported most parents as confident and informed. This potential effect increased the possibility of adoption (Developing Confidence and Coping). Parents expressed that HOBS was not an “everyday app” and wanted to normalize everyday life when appropriate. Health care professionals suggested differentiating use according to severity and reducing assessments after recovery to adapt the burden of assessments when appropriate (Normalize When Appropriate). Health care professionals’ attitude to implement HOBS in their services was positive. They perceived HOBS as useful to systemize guidance, to enhance communication regarding an infant’s condition, and to increase understanding of heart defects in health care professionals with sparse experience (Implementation in a Complex Service Pathway). Conclusions: This feasibility study shows that both parents and health care professionals found HOBS as a positive addition to the health care system and follow-up. HOBS was accepted and potentially useful, but health care professionals should guide parents initially to ensure comprehension and adapt timing to parents’ receptivity. By doing so, parents may be confident to know what to look for regarding their child’s health and cope at home. Differentiating between various diagnoses and severity is important to support normalization when appropriate. Further controlled studies are needed to assess adoption, usefulness, and benefits in the health care system.