Hjorth-Johansen Elin, Børøsund Elin, Moen Anne, Østen Ingeborg Martinsen, Wik Gunnar, Solevåg Anne Lee, Eger Siw Helen Westby, Holmstrøm Henrik
Department of Neonatal Intensive Care, Oslo University Hospital, Oslo, Norway.
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Acta Paediatr. 2025 Jun;114(6):1238-1248. doi: 10.1111/apa.17556. Epub 2024 Dec 21.
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.
这项全国性研究聚焦于个性化的心脏观察（HOBS）手机应用程序，该应用程序可帮助患有严重先天性心脏病（CHD）婴儿的父母进行出院准备并在家中做出决策。
我们在2021年至2023年期间，从挪威奥斯陆大学医院收治的患儿父母中招募了两组人员。在基线期、出院后1个月和4个月时进行测量。由于父亲们的回复不足，该研究对73位母亲进行了调查，她们评估了印刷材料或HOBS应用程序的有用性以及与压力相关的影响。
在出院准备、家庭随访和持续决策方面，HOBS应用程序比印刷信息显著更有用，尤其是当婴儿有心脏功能损害时。平均总有用性得分分别为23.9/35（95%置信区间21.6 - 26.1）和17.0/35（95%置信区间14.1 - 20.0）。两组的初始压力均从基线显著下降，并且HOBS组中对病情恶化的更高认知并未增加压力。
使用HOBS应用程序的母亲们发现它比接受印刷信息的对照组显著更有用，特别是当她们的婴儿有心脏功能损害时。对病情恶化的更高认知并未增加压力。
