We conducted a retrospective analysis on patients in charge at our PPC network. For this reason, the sample size was small and our findings cannot be generalized. However, our results highlight some points that can be of general interst in the field of PPC. This study shiws that after the beginning of the Sars-coV-2 pandemic most families assisted by our PPC service experienced and perceived a significant decrease in the level of care. Families of children in need of palliative care have by definition a fragile balance, which was further challenged by several months of temporary limitations and social distancing, with intermittent school services and limited access to sport and care facilities [12]. As expected, during the lockdown in spring 2020, there was a significant reduction in the frequency of physiotherapy sessions and medical visits. This occurrence aligned with the limitation of non-urgent care the Italian Health Authorities decided to contain the virus spread. The possible consequences of this period of missing care have already been described in the literature and will only be quantifiable in the future [6]. However, this trend was not limited to the initial phase of the pandemic. Remarkably, more than one year after the pandemic emergency onset, several families still suffered from reduced access to these services. To a small extent, this may have been due to the family’s wish, but in most cases it depended on the territory and national health services. The reorganization of the public health system induced by the pandemic emergency led to wide waiting times for non-urgent care. Therefore, many routine specialistic visits were postponed. Furthermore, the PPC team in our territory did not include a dedicated physiotherapist since our patients have to rely on different territory services, depending on the area of residence. Targeted interventions were necessary to restore the pre-covid level of care and assistance, ensuring adequate and equal access to physiotherapy sessions and medical visits.
Contrary to previous reports [9], our data showed a reduction in perceived support. This occurrence was not unexpected, considering that these families suffered from a reduction of the provided services during a fearful and anxious time in a situation of social isolation. A 24/7 support was provided by the PPC team using extemporary telematic solutions, which may have been less effective than physical presence in the families’ perception. Consistently with this idea, the perceived support returned to the previous level after loosening the restrictions, i.e., when the palliative care team members had the chance to ensure regular home visits. In this context, the pandemic emergency showed that implementing telehealth services and making patients and caregivers familiar with them was essential to establish a modern end effective PPC network in our territory, as widely reported in the literature [13, 14].
Most families did not experience a significant reduction in nursing assistance; nevertheless, they used the final open-ended question to ask for an implementation of this service. This request represents a clear distress call, which we increasingly register in our daily activity, unable to address it providing concrete solutions. The healthcare services reorganization induced by the pandemic period led to a reallocation of most territory nurses, which were employed in hospitals or vaccine centers. Therefore, ensuring adequate in-home nursing assistance to PPC patients has become even more difficult in the post-lockdown period.
To our knowledge, this is the first report on the COVID-19 impact on PPC which includes data of the post-lockdown period. The study has several limitations, the main one being the small sample size, which is a consequence of the small number of patients assisted by our PPC network, recently established (in September 2019). The sample size was particularly limited because eligibility criteria included being already in charge of our PPC network in February 2020, only 5 months after the network creation. Due to the geographic position, near the national border, many families in our territory were not of Italian origin and did not speak fluent Italian; therefore, they could not be included in the project. Other limitations included the risk of recall bias and possible mistakes while completing the questionnaire.