Caregiver Burden Associated With Respiratory Syncytial Virus (RSV) Infection in Young Children in Japan.

INTRODUCTION AND AIM: Respiratory syncytial virus (RSV) not only affects the infected child but can also affect the quality of life experienced by caregivers and families. Evidence is limited on the impact of caring for RSV-infected children. This study aimed to explore caregivers' experiences, considering the unique cultural aspects of Japan. METHODS: A sequential exploratory mixed-methods approach was employed. Mothers and fathers with children who contracted RSV before the age of one were recruited via a patient panel. Caregivers were defined as those who provided direct care to the child during their RSV infection. RSV diagnosis was based on caregiver self-report; physician confirmation was not required. Semi-structured interviews with caregivers were first conducted to elicit relevant concepts and questions. The final questionnaire was administered to caregivers in September 2023. The questionnaire assessed emotional, physical, and financial impacts, as well as the impact on and motivation to work while caring for their RSV-infected child. RESULTS: A total of 309 caregivers were included in the study. Caregivers reported a decrease in sleep duration and health quality after their child contracted RSV. Over 40% (53/120) of fathers felt the most significant time loss was due to work, while over 30% (61/189) of mothers felt it was due to house chores. Both parents felt emotionally burdened by seeing their child suffer and were anxious about their child's symptoms and conditions. More than 60% (148/235) of working parents had to adjust their work style, with some feeling mentally burdened from taking leave or being unable to take leave from work. Additionally, more than 60% (145/235) experienced changes in their perception towards work. Notably, 48.3% (58/120) of fathers perceived themselves as the primary caregiver, an unexpected result given the traditional gender roles of caregiving in Japan. CONCLUSION: This was a mixed-methods study in Japan assessing the caregiver burden of RSV-infected children. The findings provide an important perspective illustrating the impact of RSV infection and supporting the importance of adequate disease prevention.