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

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.