Hjorth-Johansen Elin, Børøsund Elin, Martinsen Østen Ingeborg, Holmstrøm Henrik, Moen Anne
Neonatal Intensive Care Unit, Division of Children and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
JMIR Form Res. 2023 Apr 5;7:e45920. doi: 10.2196/45920.
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.
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.
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.
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).
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.
所有婴儿中约有1%患有先天性心脏病（CHD）。在国际上，CHD仍然是婴儿死亡的主要原因，其中一些在家中病情逐渐恶化后意外发生。许多家长发现很难识别症状的恶化。
本研究旨在报告一款移动应用程序——心脏观察应用程序（HOBS）的可接受性和初步采用情况，该应用程序旨在支持家长了解和管理孩子的病情，并提高挪威复杂医疗服务中医疗保健专业人员的随访质量。
对9个家庭在新生儿重症监护病房出院时和在家中1个月后进行了访谈。还就他们与家庭合作的经验采访了婴儿的初级护士、社区护士和心脏病专家。采用主题内容分析法对访谈进行归纳分析。
分析产生了4个与可接受性和采用相关的主要主题：（1）个性化初始支持，（2）培养信心和应对能力，（3）在适当的时候正常化，（4）在复杂服务路径中实施。家长对学习和参与干预的接受程度因他们目前的情况而异。医疗保健专业人员强调，根据家长的接受程度调整介绍和指导的重要性，以确保理解、自我效能感，从而在出院前得到接受（个性化初始支持）。家长认为HOBS对他们很有帮助，并通过教导他们需要注意的事项来培养信心。医疗保健专业人员报告说，大多数家长都很自信且了解情况。这种潜在效果增加了采用的可能性（培养信心和应对能力）。家长表示HOBS不是一款“日常应用程序”，并希望在适当的时候使日常生活正常化。医疗保健专业人员建议根据严重程度区分使用，并在康复后减少评估，以在适当的时候减轻评估负担（在适当的时候正常化）。医疗保健专业人员对在其服务中实施HOBS的态度是积极的。他们认为HOBS有助于系统化指导、加强关于婴儿病情的沟通，并增加经验不足的医疗保健专业人员对心脏缺陷的了解（在复杂服务路径中实施）。
这项可行性研究表明，家长和医疗保健专业人员都认为HOBS是医疗保健系统和随访中的一项积极补充。HOBS被接受且可能有用，但医疗保健专业人员应首先指导家长，以确保理解并根据家长的接受程度调整时间。通过这样做，家长可能会有信心了解孩子健康方面需要留意的事项并在家中应对。区分各种诊断和严重程度对于在适当的时候支持正常化很重要。需要进一步的对照研究来评估在医疗保健系统中的采用情况、有用性和益处。
