The ongoing impact of Covid-19 pandemic on children with medical complexity: the experience of an Italian pediatric palliative care network

BACKGROUND: Italy was the first European country to experience a massive outbreak of Sars-coV-2 in March 2020. Severe measures were introduced to face the pandemic, significantly impacting all healthcare services, including pediatric palliative care (PPC) networks. We investigated how the Covid-19 pandemic modified the provision of PPC services in Friuli Venezia Giulia, Italy. Both the acute and long-term impacts on the families were addressed. METHODS: We administered a retrospective three-sections online questionnaire to the eligible families assisted by our regional PPC network. Inclusion criteria were: child needing specialistic PPC, adequate knowledge of the Italian language, being in charge of the PPC regional network of Friuli Venezia Giulia from February 1, 2020. The three sections examined the same issues in different periods: the pre-covid period (until February 29, 2020), the lockdown period (March 1, 2020, to April 30, 2020), and the post-lockdown period (May 2021). RESULTS: Twelve patients were included. During the lockdown period, 54.6% of children had to stop physiotherapy sessions, while, among those who continued, 80.0% experienced a reduction in the sessions’ frequency. In the post-lockdown period, 45.5% of children did not have physiotherapy as often as before the pandemic onset. Overall, the access to medical visits during the lockdown and after its end was significantly reduced (p = 0.01). The level of support perceived by the families descended from grade 3 (intermediate) in the pre-covid period to 2 (low) during the lockdown (p < 0.05) and returned to grade 3 in the post-lockdown period. CONCLUSION: The COVID-19 pandemic and the related restrictions impacted the families and caused a transitory contraction of the perceived support. The most significant change was reduced access to medical visits and physiotherapy, which lasted over a year after the start of the pandemic. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13052-022-01206-9.