Imagine you are ill, have been ill all your life. And then comes Corona. While everyone is talking about vulnerable groups, you are one of them. What does that do to you? How do you protect yourself? How do you live with the risk, which is much higher for you than for most others? Professor Petra Warschburger wanted to know that. The counseling psychologist has long conducted research on children and adolescents living with chronic diseases. She is particularly interested in what is giving them trouble. Or whether they find their own ways of coping with the permanent stress that their conditions impose on them. Corona might have become a burning glass for them, intensifying this stress. But it is also possible that they are coping better with the constant threat of an unknown virus than many others who have yet to experience what it is like to have a disease that determines their daily lives. Prof. Warschburger has initiated a DFG project together with other researchers and experts from clinical practice to investigate how children and adolescents with chronic conditions and their families get through the pandemic. After all, there were no bailout funds, special programs, or corona bonuses for them.
In the spring of 2020, life in Germany suddenly came to a standstill. In the absence of a vaccine against the coronavirus, people first put on masks, then changed to home office work. Daycare centers and schools were closed. Cultural institutions and sports clubs also shut down, and even medical services were reduced to the bare minimum. Outpatient clinics were closed, appointments and operations, which could be postponed, were canceled. This became a problem especially for those who needed regular medical care or checkups. “There are many physicians in our research consortium who provide daily medical care to children and adolescents with chronic conditions,” Warschburger says. “During this time, they realized that their patients’ health care was at risk.” They took action and set up phone and video consultations, provided emergency care where needed. Together with their colleagues in research, they launched a project to scientifically analyze these extraordinary circumstances and draw the necessary conclusions.
Does the pandemic increase mental stress?
“We wanted to take a closer look at the impact of the Corona pandemic and everything it implied for children with chronic conditions,” Warschburger explains. Indeed, such people have a higher risk of a more severe course of Covid19. “It is a reasonable assumption that it might be hard to handle he additional risk, this additional stressor, and that it might have an impact on the mental state and well-being,” she says. A comparative study will show whether that's really the case: In this study, children and adolescents with chronic illnesses as well as their parents will be interviewed about how well the medical care for them works in the exceptional situation, how they perceive the risk of coronavirus infection, and how that affects their well-being. “Of course, everyone was affected by the stress caused by the corona pandemic,” Warschburger says, but we know that people with chronic diseases are a particularly vulnerable group.” So, it stands to reason that the pandemic has an aggravating effect on them – not only in terms of their disease, but also the stressful concomitant circumstances that additionally affect their well-being.
The study focuses on groups with different diseases: obesity, type 1 diabetes ,and rheumatic diseases. “We don’t just want to have a look at one large group to see who is coping or not coping but to draw comparisons between the disorders.” Do people with different chronic conditions perceive risks and impairments in a similar way? Do they get different medical care? Are there different strategies for dealing with the pandemic?
To answer these questions, the researchers and practitioners of the consortium have launched a large-scale survey. It is an advantage that the network includes numerous care centers for people with chronic diseases: A total of more than 200,000 people are recorded in the respective three patient registers. Through these registers, children and adolescents as well as their parents can be recruited for the study. “The invitation is made at a low threshold during the check-up appointments – with only a few additional questions that we were able to add to the normal surveys,” she says. How do the children and adolescents assess their own risk of a corona infection? What is their care situation? Are there hospitalizations, days absent from school, and missed office hours? What about video consultations and substitute services? Finally, everyone is invited to participate in an in-depth interview. The aim is to interview about 400 people and their families, says Warschburger. Parents and children will each answer their own questions: To what degree is family life affected by the restrictions?? How do their relationships with parents, friends, and their environment change? Stress, behavioral problems, loneliness or a possible change in the way they deal with the chronic disease. All these factors are relevant. The researchers are particularly interested in what mechanisms the children and adolescents develop or may already be using in dealing with the Corona pandemic. “We know from previous studies in our network that children and adolescents with chronic conditions have or develop special resources that make it easier for them to deal with the disease but also with other problems,” she says. These “healing” resources include optimism, self-efficacy, i.e. the conviction that they can master difficult situations, social resources such as a supportive environment, the experience of meaningfulness, empathy, and self-worth.
Do people with a chronic condition see their risks more realistically?
While the extensive surveys are still in progress, the first approximately 1,500 data sets from the brief survey are currently analyzed. Thanks to the patient registers, the information that was collected during the pandemic could be compared with older data sets of the respondents. In this way, it is possible to identify not only changes in their chronic conditions. It also reveals the state of their mental well-being – and the role Corona plays. It is already apparent that children and adolescents living with a chronic disease are more realistic than others. “What they ‘lack’ is the so-called optimistic bias,” Prof. Warschburger explains. Most people tend to assess their own risk of a coronavirus infection lower compared to their peers, for example. This might not apply to individuals with a chronic disease. “They’re more realistic about it, more experienced.” Studies on the mental stress of children and adolescents during the pandemic have shown that stressors such as anxiety, depression, and feelings of isolation have increased. However, the first evaluations show that this increase is not as high among those with chronic diseases. Even before the pandemic, they were under more psycho-social stress than their peers without chronic conditions.
But not just absolute numbers or trends are important to Warschburger and her research team. “There will be families that have come closer together, others will be groaning under the additional stress,” she says. “We want to find out as much as possible about what has particularly distressed or helped them.” The in-depth surveys, which will also be repeated after about one year to track long-term developments, will provide information. If it turns out, for example, that the school closures particularly distressed the children and adolescents, such measures should only be considered if nothing else works. If the improvised video consultations prove to be a helpful tool, such things could possibly be established in medical care. “We hope that in the end, we will not only know more about the effects the exceptional situation of the pandemic has had on the children and adolescents,” Warschburger says, “but we also want to gather a wide range of details that we can use to improve their care and treatment in the long run.”
Kick Covid - A prospective analysis of the long-term impact of the COVID-19 pandemic on well-being and health care among children with a high-risk chronic condition and their families
Participating institutions: University of Potsdam, Ulm University, German Rheumatism Research Centre Berlin, Universitätsklinikum Gießen, Charité Universitätsmedizin Berlin
Funding: German Research Foundation (DFG)
Duration: May 2021 – April 2024
Prof. Petra Warschburger studied psychology at Trier University. Since 2003, she has been Professor of Counseling Psychology at the University of Potsdam.
Do you want to share your experiences and participate in the study? All parents with a child up to the age of 21 years can participate, regardless of whether their child has a chronic disease or not.
This text was published in the university magazine Portal Wissen - Two 2022 „Humans“ (PDF).