Abstract
This national study focused on the individualised Heart Observation (HOBS) mobile phone app, which helps the parents of infants with severe congenital heart disease (CHD) with discharge preparations and decision making at home. We enrolled two groups of parents from 2021 to 2023, during their child's initial hospitalisation at Oslo University Hospital, Norway. Measurements were carried out at baseline and one and four months after discharge. The study examined 73 mothers, who assessed the usefulness and stress-related impact of either printed materials or the HOBS app, as the fathers' responses were insufficient. The HOBS app was significantly more useful than the printed information, with regard to discharge preparations, follow up at home and ongoing decision making, particularly if the infants had sustained cardiac impairment. The average total usefulness scores were 23.9/35 (95% CI 21.6-26.1) versus 17.0/35 (95% CI 14.1-20.0), respectively. Initial stress significantly decreased from baseline in both groups and elevated awareness of deterioration did not increase stress in the HOBS group. Mothers who used the HOBS app found it significantly more useful than the controls who received printed information, particularly if their infant had sustained cardiac impairment. Elevated awareness of deterioration did not increase stress.
Published Version
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