From the global epicenter of the COVID-19 pandemic, insights on helping families and children cope
Just as the coronavirus outbreak reached its peak in the Italian province of Lombardy a group of health care professionals, many with Papa Giovanni XXIII hospital in Bergamo, published a short commentary which caught the attention of staff at the UNICEF Office of Research – Innocenti in Florence. Their simple message: COVID-19 was decimating their whole town and therefore required a completely new way of fighting the disease and its multiple side-effects ripping through their community.
Bergamo is a picturesque city in the Lombardy Region of Northern Italy. Its immediate surroundings form part of one of the richest and most industrialized areas in Europe. Not far from the buzzing urban centre of Milan, Bergamo is also adjacent to a series of alpine valleys near the Swiss border where, by contrast, rural communities and their traditions are well preserved.
A dark nightmare
In mid-February, this peaceful community, with a pragmatic approach to life and deep-rooted traditions of care for others, plummeted into a dark nightmare whose end is still unknown. Even with one of the best standards of medical care in Europe, COVID-19 has completely overwhelmed Bergamo’s healthcare systems.
The latest report of the National Institute of Statistics on mortality in Italy, based on data obtained from municipal registries, indicates that in March 2020, 5,400 persons died in Bergamo. Of this number, 4,500 deaths were apparently due to coronavirus. As reported by the local newspaper the total number of deaths is six times the number of deaths registered in the same period in 2019.
The number of infected people is probably far higher than what is reported by official statistics, which are based on COVID-19 tests performed only in hospitals on symptomatic patients. According to the Italian Civil Protection agency, in March the province of Bergamo had 2,080 deaths and 8,803 infections confirmed by test swabs. Incredibly, by these statistics, the COVID-19 fatality rate in Bergamo is many times higher than the global fatality rate estimated by Imperial College London, published in The Lancet.
In Bergamo almost every household contains or knows of someone who has either died or is fighting for their life due to the virus. The town has become well-known throughout Italy for the sad daily ritual of Italian military trucks transporting coffins to other regions. Local cemeteries and mortuaries in Bergamo were completely overwhelmed several weeks ago.
Focus on households and communities
In this unimaginable situation, each day doctors and nurses repeat a titanic and unparalleled effort against the virus. In the midst of this tragedy a group of physicians, community workers and local agencies set up a ‘multidisciplinary task force’ to reflect on Bergamo’s circumstances as the epicenter of the pandemic. When the authors of this piece began to contact them to find out what lessons they might share for countries yet to follow in their path, a series of important, yet less considered ideas began to emerge.
First, they consider this pandemic a humanitarian crisis which requires new actions, new models, new thinking for them as well as for the international community and humanitarian agencies. Following the traditional patient-centered approach to care is no longer enough. A community-centered care approach is needed to respond to the challenges that the emergency is posing. Developing a sustainable model can be crucially important project for the entire world, Bergamo being, at this moment, arguably among the hardest hit cities in the world.
One of the first lessons they shared was the absolute necessity to reverse the ingrained idea that the hospital is where you should rush for urgent care. All too often, families repeated the mistake of speeding family members struggling to breath to the hospital, only to be engulfed in the most contagious environment possible. In Bergamo the health care community quickly realized that aggressive community-based measures were needed to identify and keep moderate cases best suited to recovery at home, as far away from the hospital as possible. From the start it became clear that households played a central role in the community response.
Children - the hidden victims
In such a dramatic situation, children and their families – especially the most vulnerable and fragile –quickly become the ‘hidden-victims’ of this crisis. Not considered at high risk of succumbing to the virus, nevertheless urgent measures to support a range of spill-over effects had to be put in place.
Municipal governments and civil society groups together with psychological and health services have started to implement various channels of remote response to emerging needs. They are focusing first on relatives of hospitalized patients and health workers (“Curare chi cura”). They are also working to ensure continuity of care for vulnerable persons and children with disabilities already being assisted by health services.
A team of pediatric psychiatrists, also based at Papa Giovanni XXIII hospital, has conceptualized (for discussion) an ecological model to promote and support protective factors for children based on three main strands: family, community and schools. Central to this approach is the concept that the adults in children’s lives are the primary channel for most forms of care and support.
In a Bergamo-type scenario almost everyone who is sick with something other than COVID-19 is unable to receive medical treatment. The implications of this are horrifying for everyone, but for children, especially vulnerable children, this can equate to lifelong consequences. This situation offers perhaps the most powerful argument of all for staying home at all costs and reducing the chance of a broken bone or a bicycle accident leading to a hospital trip and almost certain exposure of the virus.
Care for children by supporting caregivers
It is crucial to look at stressors on caregivers, teachers and child social service providers and to strengthen networks across families, local institutions (municipalities), schools, social workers and physicians. These networks must be supported to maximize efforts to reach not only those children who are already receiving medical and social support, but also those children at risk of becoming invisible without a system in place to help and support them before their conditions become pathological.
Many children in Bergamo live in families that have experienced one or more deaths. While grieving over lost family members, they live in fear of more infections along with deep anxiety over the loss of household income. In this setting children’s emotional needs often fade from view. They do not have adequate opportunities to be heard, and often refrain from asking questions to avoid increasing the burden on their parents. They cannot share their own fears with friends at school or mitigate them by playing with classmates. Largely, they remain unheard, while adults try to cope with multiple difficulties at the same time.
Adolescents and young people may feel a sense of pride in their ability to help their families and community to adjust to the online reality they now all live in. Bergamo pediatric psychiatrists observe that for some adolescents, familiarity with the internet appears to be more like an asset that is keeping them connected with friends, social networks and information. For those who do show signs of distress, services providers are creating networks to share resources and knowledge to better target and differentiate their interventions. Within these networks, pediatricians will play a critical role in early warning of signs of distress.
Mental health - before, during and afterwards
Bergamo mental health specialists highlight the importance of strengthening communication between hospital staff and family. Families are bombarded with life and death situations affecting their loved ones and there is an urgent need for hospital staff trained to inform families of critical situations in the most sensitive manner combined with the offer of psychological support. Often this can be a crucial first step in restoring a sense of community, as well as a means of addressing emotions and concerns for the entire family.
Building and strengthening a sense of community is also an important component in overcoming the barrier of stigma associated with revealing one’s weakness or the need for help. This can be a challenging social norm in places like Bergamo, often preventing people from asking for the support they need and worsening household circumstances where vulnerable children live.
The Bergamo team proposes that a pool of institutions and representatives serving various sectors of the community develop a "Charter to live with COVID-19" – at both the community and family levels – to engage the whole community, down to the household level, and to promote use of the resources put in place by the various stakeholders, in most cases on the internet.
The ‘Community Charter’ would promote solidarity and support to alleviate the burden of a health crisis which has also become a social and economic crisis. It would prioritize and make more accessible concrete services to cope with the emergency, including economic and psycho-social support.
The ‘Family Charter,’ on the other hand, should locate and identify fragile families and parents, helping them with concrete suggestions on how to support their children, maintain routines, and organize moments of lightness together. It would help parents and caregivers to acquire the necessary skills to recognize signals of distress in children which would require referral. Crucial in this work will be building multiple layers of support for parents who have been serving as nurturers, caregivers, teachers, counselors and supporters of children and young people.
Schools intersect all children's lives
Lastly, school is the one agency that intersects the lives of almost all children. Health professionals say they have not observed significant disparities in learning during the period of school closure, due, in their view, to Bergamo’s very high standard of living. But the true picture of educational disparity could be unclear, with all attention still on saving human lives.
However, educational authorities need to start thinking about how to support children when they come back to class. And teachers will need enormous support as they come in contact with the social and emotional trauma on children who have spent months in quarantine as family and friends succumbed around them. For many children, especially for the most vulnerable and fragile, schools represent the only familiar and constant space for social and emotional support. Planning a shared community moment at the beginning of the next school year can provide an opportunity to talk about what occurred and to empathetically listen to everyone's stories.
The lead author of the paper referenced in the beginning of this narrative emphasizes that concerted international humanitarian response is needed in places like Bergamo. He also warns that the coronavirus outbreak should not be confused with an earthquake. The symptom profile and population dynamics of the contagion requires a prolonged multi-sectoral, multi-phase response that could take quite different forms along the way.
Summary of lessons on caring for children and families – Outlined by Bergamo health workers
The symptom profile and trajectory of COVID-19 makes it almost impossible for existing data systems to explain the true scope of the problem;
The virus cannot be fought with a patient focused approach to care; it can only be attacked effectively with a community care approach;
Children and families are not the most vulnerable to COVID-19 contagion, but they are vulnerable to being hidden or sidelined in the worst hit communities;
It is essential to reverse the ingrained response that the hospital is where people should rush for urgent care as they become the most dangerous hotbeds of infection, and where children can easily become asymptomatic cases;
Children (and adults) who are sick with anything other than COVID-19 will almost certainly be neglected; perhaps the most compelling reason to remain at home and minimize the chance of an accident or injury that would ordinarily lead to a hospital visit;
Focus on stressors affecting parents, caregivers, teachers and child social service providers and strengthen networks that support them across families, local institutions (municipalities), schools, social workers and physicians;
Keep children’s emotional needs uppermost and ensure they have space to express their opinions and that they are encouraged to do so. High standards of living and low inequality are no assurance that educational equity is being maintained during school closure;
Adolescents may feel a sense of pride in their ability to help family members adjust to the new reality of a fully online community; often their deep experience with online interaction can be a powerful source for connection, social networks and vital information for themselves and their families;
Prioritize training of hospital staff in sensitive communication with loved ones following the death of a relative as this has been observed to mitigate the impact of intense grief on children and families;
Even in such a devastating period social stigma against expressing weakness or asking for assistance can be a severe obstacle to working through households to address the needs of children;
Establishing a ‘Charter to Live with COVID-19’ can be a powerful tool for communities and families to assert their determination to survive and focus on the needs of the most vulnerable members of their homes and neighborhoods;
Provide support to adults who will be called on to shoulder far more that their usual responsibilities as they must be the hands that health, social work, education and protection services for children are delivered during quarantine;
Teachers and schools provide a crucial continuum of support that often goes far beyond learning both during quarantine and in the very sensitive period immediately afterwards. They need more support that is commonly considered at this stage.
Patrizia Faustini is Sr Communication Associate and Dale Rutstein is Chief of Communication at the UNICEF Office of Research – Innocenti. The writers would like to acknowledge the following physical and mental health professionals of Bergamo who generously contributed their insights and their precious time during the worst health crisis to hit their community in centuries. Susanna Ambrosino, Psychologist; Lorella Giuliana Caffi, Child Neuropsychiatrist; Andrea Ciocca, Project Coordinator; Sara Forlani, Child Neuropsychiatrist; Donatella Fusari, Physiotherapist; Ludovica Ghilardi, Research Fellow, London School of Hygiene and Tropical Medicine; Claudia Guuva, Child Neuropsychiatrist; Francesca Lesmo, Psychologist; Michela Marzaroli, Child Neuropsychiatrist; Mirco Nacoti, MD, Anesthesia and Intensive Care; Anna Polo Resmi, Child Neuropsychiatrist; Anna Maria Scioti, Psychologist; Patrizia Maria Carla Stoppa, Child Neuropsychiatrist.