Burden and Healthcare Needs of Caregivers of Children with Inflammatory Bowel Disease after the End of China’s Dynamic Zero-COVID-19 Policy: A Single Center Study
Published: 2024-05-22
Page: 112-127
Issue: 2024 - Volume 7 [Issue 1]
Yiwen Zhou *
Department of Gastroenterology and Hepatology, Children’s Hospital of Fudan University, Shanghai, China.
Xiaofeng Xu
Department of Gastroenterology and Hepatology, Children’s Hospital of Fudan University, Shanghai, China.
Yuyan Huang
Department of Gastroenterology and Hepatology, Children’s Hospital of Fudan University, Shanghai, China.
Ying Gu
Nursing Department, Children’s Hospital of Fudan University, Shanghai, China.
Zhaoyang Gou
Department of Gastroenterology and Hepatology, Children’s Hospital of Fudan University, Shanghai, China.
Zhuowen Yu
Department of Gastroenterology and Hepatology, Children’s Hospital of Fudan University, Shanghai, China.
*Author to whom correspondence should be addressed.
Abstract
Background: Following China's decision to end its dynamic Zero-COVID-19 Policy in December 2022, COVID-19 infections surged in the subsequent month. Presently, there exists a scarcity of epidemiological data regarding COVID-19 in Chinese children with inflammatory bowel disease (IBD). Additionally, there is a lack of information regarding the burden of caregivers of these children and the specific healthcare requirements for home care.
Methods: From January 18 to February 1, 2023, an anonymous online survey was conducted to gather data on the demographics of participants, their experiences with COVID-19 infection, caregiver burden, and the healthcare needs of children with IBD.
Results: The study obtained a response rate of 73.06% from participants, consisting of 98 (54.75%) males and 81 (45.25%) females. The average age (SD) of the respondents was 11.44 (4.29) years old. Among the 179 children with IBD, 116 (64.80%) experienced COVID-19 infection.
Caregivers reported facing various burdens, with financial burdens being the most significant, followed by psychological, physical, and time burdens. Overall, caregivers of COVID-19-uninfected children experienced a heavier burden compared to those with COVID-19-infected children. Significant differences were observed in terms of physical burden (P=0.01) and time burden (P=0.03) between caregivers of COVID-19-infected and uninfected children.
The most needed health service for caregivers was found to be telemedicine service (Mean=3.66), followed by knowledge concerning COVID-19 in children with IBD (Mean=3.55), vaccination recommendations (Mean=3.40), diet and nutrition care (Mean=3.37), psychological counseling and care (Mean=2.51), care for perianal lesions (Mean=2.09), and care for wounds or stomas (Mean=1.84). However, there were no significant differences in healthcare needs between caregivers of COVID-19-infected and uninfected children.
Conclusions: In this study, despite more than half of the children being infected with COVID-19, the symptoms were mostly moderate, with no severe cases observed. Caregivers identified financial burden as the primary challenge, with caregivers of non-infected children experiencing a greater burden than those of infected children. There was a significant demand for telehealth services, highlighting the need for further development in China to meet the increasing medical care requirements during the pandemic.
Keywords: COVID-19, economic challenges, quarantine, potential human rights