Fellow Nagano Children's Hospital Azumino, Nagano, Japan
Background: Home oxygen therapy (HOT) is commonly introduced in children with bronchopulmonary dysplasia (BPD). However, the impact on family life remains unknown. Objective: Thus, we aimed to evaluate the impact of HOT use for 3 years for BPD on families in order to establish more effective management strategies. Design/Methods: This web-based questionnaire was administered from February 2024 to June 2024 via the Japanese Organization for NICU Families. Questions regarding useful preparation before discharge, actual life after discharge, and real-life advantages and disadvantages of home monitoring devices such as pulse oximeter were included. Results: The number of valid responses was 102. Approximately 91% of the children (n = 93) were born with a very low birth weight. The most common answers regarding predischarge useful preparations were “coordination of home nursing care” (n = 62) and “instruction on emergency response” (n = 41); “trial stays” (n = 19) and “home visits” (n = 19) were the least common answers. Approximately 49% of the parents left the hospital with some anxiety. Furthermore, 73% of the parents felt that after discharge life was more difficult than imagined. This was mostly due to device handling issues (n = 85). Approximately 11% of the children experienced accidental falls by device codes. Furthermore, 92% of the families (n = 94) have started using home monitoring devices, such as pulse oximeter. Based on home monitoring, 26% of the parents had stopped using the device or had changed the oxygen flow rate at their own discretion. Among those being monitored at home, there were some complaints of unnecessary alarms (n = 69) and inaccurate measurements (n = 61). However, 98% of these parents (n = 92) felt that it was necessary; mostly, it made them feel safe.
Conclusion(s): Although most families experienced more difficulties after discharge, they did not feel that “trial stays” and “home visits” were useful. Current preparations for HOT introduction appear to be insufficient for families, especially supports for after discharge life. Although there are few reports on the usefulness of home monitoring, most parents felt that it was necessary. Thus, its introduction should be actively considered. Furthermore, it would be beneficial to provide instructions that are more relevant to their real life.
