Tatiana Soares, 39, lost her mother to Covid-19 in April 2021. She is an only child of divorced parents and never wanted to leave her side. They shared the same backyard. The shock of the loss was great. “Her departure was so quick, and very painful, because she was a healthy person who suddenly caught this disease, hospitalized, intubated and left”, she reports.
As in so many other stories marked by the pandemic, Tatiana did not have the chance to at least say goodbye to her mother. “They didn’t call me before intubating her, anyway, I didn’t see her again after her hospitalization, only the coffin, closed. After her departure, another surprise, I found out I was pregnant.”
Not knowing how to deal with the situation, he sought help. She arrived at Proalu, the Mourning Reception Program of the Psychiatry Department of Unifesp (Federal University of São Paulo) which, as the name implies, provides support to the bereaved. And, in addition, it promotes education related to grief, both for the community and for health professionals.
“The program helped me a lot. At first I couldn’t even get into her house. During the sessions, my work changed to a home office. Guess where I installed my office? In my mother’s room, and I also did some sessions there. For me, it was a step forward. It helped me to understand that I was not to blame for his departure, that our history was not limited to recent events”, says Tatiana.
It is for stories like this that psychologist and professor Samantha Mucci, head of the discipline of Psychotherapy and Medical Psychology at Escola Paulista de Medicina, and coordinator of Proalu, made a request when talking to the report: “Disclose Proalu”.
The program, which serves the SUS, at the Center for Integrated Attention to Mental Health (CAISM) in Vila Mariana, in the south of São Paulo, took shape in 2020, during the pandemic. The psychologists who work in the ICU and emergency room of Hospital São Paulo took the demand for a specialized bereavement service. The feeling for those bereaved by covid, professionals noted, was different.
“With covid, and there are already studies on it, there is an intense feeling of guilt in those who stay or survive. or ‘I wasn’t with him at the final moment.’
The welcoming project had been in the drawer for some time. The teacher always addressed the topic in her college classes. Proalu, then, was structured, for adults, in two screening meetings and four welcoming meetings, called Acolhimento Breve ao Luto.
For the work, psychology and psychiatry residents were trained. So far, in total, 457 bereaved adults have been assisted in 2,742 consultations. The team, which initially consisted of 25 volunteers, now has 45 people. So far, the program has not received any extra funding from the federal government.
Private sector collaboration
Samantha, who defines herself as an idealist, did everything, as they say in popular parlance, “in race”. It bets on the expansion of the project and, for that, it counts on the help of the private sector. This collaboration is already happening. Called by a fabric company to talk about grief with employees, the teacher traded her job for help putting the Proalu website online and buying material for the play box — a tool of psychology and pedagogy.
In addition to those bereaved by the covid, Proalu receives bereaved by suicide and cancer, which Samantha also links to the pandemic due to the increase in mental disorders and the delay in the search for diagnoses.
This was the case of Ana Rosa T. Stoppa. Her mother, after a week of hospitalization, succumbed to bladder cancer. Her five-year-old daughter suffered from her grandmother’s absence. In a WhatsApp group at the girl’s school, she learned about Proalu and her daughter has already finished her treatment.
Ana Rosa reveals how both were helped. “My daughter is able to talk more about the subject and understand better the absence of her beloved grandmother. I, who had not even signed up for the program, was pleasantly surprised to find a wonderful therapist who helped me think about something I had hidden until from myself.”
In addition to needy people, of great social vulnerability, the program, according to the professor, receives patients who could pay, but who seek the project out of trust, since Proalu has become a reference.
Focus on the care of children and adolescents
Now, the focus of Proalu is to intensify the care of children and adolescents, a stage that began last year, when Samantha realized that there was nothing specialized in this age group. “It had to be through the SUS”, she says.
For them, the program is a little different. There are two screening meetings and another 16 in grief psychotherapy. Caregivers participate in fostering groups and receive guidance on how to talk to these children and adolescents about losses.
“There are many losses secondary to concrete grief. A family member dies, who is sometimes the main provider or provider. This generates a very large social impact on the child. In addition to losing her father, mother or caregiver, she had to going to live at grandma’s house, moving to another city, changing schools, losing friends”, he explains.
To date, 22 families, bereaved children and adolescents and their surviving caregivers have received care. Registrations are open by email [email protected]
With demands coming from the most diverse parts of the country, Samantha’s main concern is to be able to meet all the children and adolescents who seek Proalu. Not wanting to leave anyone behind, she decided that the care of children and adolescents, in addition to the Vila Mariana clinic, will be online. With adults, this work at a distance is already done by platforms available in the market.
For the younger ones, however, the objective of the program is to reproduce an environment as hospitable as what the team can offer at CAISM in Vila Mariana. The platform is already under development and should be operational by September. It is being prepared by Wire EdTech Solutions, which works on educational projects for corporations and schools.
The exclusive virtual environment will have zero cost for Proalu — it is a donation from the company to the project. The expectation is that attendances can be tripled with the help of technology.
“One of the alternatives, and we are still looking for another partner, is to offer a ‘gamified’ platform (without any competitive aspect), in which there will be avatars, virtual characters that can be customized. the platform and browse the site’s content”, says Renato de Amorim Gomes, from Wire.
In this same environment, in addition to accessing the available materials, the patient will have the connection to talk to the psychologists and psychiatrists who work at Proalu. In addition to the platform, Wire is redesigning the Proalu brand and organizing the booklets available on the site.
At the company, which has 20 employees, seven people volunteered to participate in the project — all of them volunteered, and there is no extra payment for the time they dedicate. Of effort, Gomes believes that the project, if it were charged, would be around R$ 20 thousand.
“Every year we choose one or more projects to support, always in line with education. This is good for us as people. It’s doing something beyond profit”, explains Gomes.
Proalu has an arm that Professor Samantha calls psychoeducational. On the program’s website there is a list of books for adults and children, movies, music, podcasts and other publications that address the topic.
Among the suggested contents, there is, for example, the song “Não Tem Medo da Morte”, by Gilberto Gil, in which the Bahian composer says: “I’m not afraid of death / But I’m afraid of dying, yes / Death and after me/ But I’m the one who’s going to die/ My last act/ And I’ll have to be present”.
From cinema, the list highlights productions such as “Ghost”, which approaches death in a more spiritual and romantic way, “Marley and Me”, about friendship and farewell between a family and their pet, and the Brazilian “Elena”, in which suicide is discussed in its different aspects.
types of mourning
On Proalu’s Instagram there are dozens of posts that clarify questions about grief in its most varied forms — and anyone who browses the content will have the perception that a topic that is often so neglected has numerous aspects to be considered.
Such as, for example, the so-called Anticipatory Grief, the one that begins when an individual receives a medical diagnosis that will bring significant changes in their life, such as imminent death.
Another type of mourning addressed is that related to public people, when the feeling can take on a more collective aspect. The example cited by Proalu is that of comedian Paulo Gustavo, who died in May 2021, a victim of covid. At that time, the post warns, seven out of 10 Brazilians knew someone who had died of covid. And so the actor’s death brought a familiar feeling.
“In the case of Paulo Gustavo, both the mother and the son identified with him (because of the character Dona Hermínia). There are all our projections. It’s as if a person we really knew had died”, explains Samantha.
She believes that the theme of grief should be brought to schools – which is an environment in which, inevitably, the child or adolescent will experience part of their grief. Teachers and other colleagues, with more knowledge on the subject, could then welcome the bereaved more effectively.
According to Samantha, there is already a demand from Unifesp for Proalu to generate data for research, which, when it comes to public health, is always important. With so many demands, the coordinator hopes to soon be able to embrace this one more.
This report was developed in partnership with Republica.org, a non-partisan and non-corporate social organization dedicated to contributing to the improvement of public service in Brazil, in all spheres of government.