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

Abstract

BACKGROUND Approximately 1 % of all infants are born with congenital heart disease (CHD). Internationally CHD is still 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 acceptability and initial adoption of a mobile app, the Heart Observation app (HOBS), aiming to support the parents’ understanding and management of their child’s condition and to increase quality in follow-up from healthcare professionals in complex healthcare services in Norway. METHODS Nine families were interviewed on discharge from the neonatal intensive care unit and after one month at home. The infant`s primary nurse, community nurse and cardiologist were also interviewed about their experiences about collaboration with the family. The interviews were analyzed inductively with thematic content analysis. RESULTS The analysis generated four main themes related to acceptability and adoption: Individualize initial support: Parents receptivity to learn and attend in the intervention differs according to their present situation. Healthcare professionals emphasized the importance of adapting the introduction and guidance to parents’ receptivity to ensure comprehension, self-efficacy and thereby acceptance before discharge. Developing confidence and coping: Parents perceived that HOBS served them well and nurtured confidence by teaching them what to be aware of. Healthcare professionals experienced most parents as confident and informed. This potential effect increase the possibility of adoption. Normalize when appropriate: Parents expressed that HOBS was not an “everyday-app” and wanted to normalize everyday life when appropriate. Healthcare professionals suggested differentiating use according to severity and reducing assessments after recovery to adapt the burden of assessments when appropriate. Implementation in the complex service pathway: Healthcare professionals’ attitude to implement HOBS in their services were 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 healthcare professionals with sparse experience. CONCLUSIONS This feasibility study shows that both parents and healthcare professionals found HOBS as a positive addition to the healthcare system and follow-up. HOBS was accepted and potentially useful, but healthcare professionals should guide parents initially to ensure comprehension and adapt timing to parents’ receptivity. Doing so, parents may be confident to know what to look for regarding their child’s health and cope at home. To differentiate use between various diagnosis 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.