It actually seems quite obvious: Those who are always sick are also more prone to psychosocial stress. But is that really true? “In fact, we have to assume that between 10% and 20% of children and adolescents with chronic diseases also develop mental disorders,” says Warschburger. The problem is that it often goes unnoticed. The focus is far too strongly on their somatic diseases. Injecting insulin, relieving pain, and keeping medical appointments – it is easy to overlook whether they can deal appropriately with the disease-related stress and everything that comes with growing up. And all this despite the fact that most of them will get medical treatment throughout their whole life. “Most often, patients develop internalizing disorders such as anxiety or depression that only become apparent when taking a closer look or searching for them. Only a few stand out due to externalizing mental disorders such as aggressive behavior,” Warschburger explains. “So most of these disorders go unnoticed - and untreated.”
There seem to be, however, many children and adolescents who have learned to successfully cope with their particular burdens. How do they manage to cope with their disease, with everyday stress, and the challenges of growing up? This has not yet become clear. Warschburger would like to better understand both aspects. To this end, she initiated the COACH project with partners at Charité Berlin, the University Hospital Düsseldorf, and Ulm University. They try to find out which special resources young people with a physical chronic disease have or develop that make it easier for them to deal with their medical condition but also with other problems - and protect them, so to speak, from mental disorders.
As a first step, COACH also aims to open the eyes of medical professionals to the stress loads of these adolescents. “Chronic diseases can significantly reduce the quality of life of the affected,” says Warschburger. They also have to cope with age-related developmental tasks, which are not always compatible with their disease, e.g. acceptance of their own body, identity development and preparation for work and family life. “To find out whether they have problems with this requires targeted questions. Otherwise you will not be able to find out.” Therefore, the psychologist hopes that the results of her project will improve psychological support for chronically ill children and adolescents. Much would be gained by integrating appropriate surveys and examinations into standard medical care. “If children who have to take medication all their lives do not want to take it, it may be because the pills are a constant reminder that they are different, that they are sick. Then you have to help these children here as well.” In fact, the clinical project partners included information and surveys into the medical care of eligible patients in order to recruit participants to the COACH study. If the project is successful, they hope that this extended psychological support could become widely accepted.
The large-scale COACH study is intended to investigate how best to help chronically ill adolescents who also develop mental disorders. The researchers want to learn from those adolescents who are better able to cope with their disease. “We are primarily interested in the strengths, characteristics, and skills that make it easier to deal with the disease, especially in this phase of life,” Warschburger explains. These “healing” resources include optimism, self-efficacy, i.e. the conviction that one can master difficult situations, social resources such as a supportive environment, meaningfulness, empathy, and a sense of self-worth. While they are often worse off than other children and adolescents in terms of their quality of life due to their disease, quite a few draw helpful conclusions - what’s called “benefit finding” - from their situation. Through their disease they have become aware of their own strengths and recognize positive aspects. “We want to investigate which resources are particularly helpful. On this basis, therapeutic approaches for other adolescents could be developed,” she says.
The researchers initially identified possible resources in the literature, but also in many conversations - so-called qualitative interviews - with chronically ill adolescents. “We wanted to know their strengths, what helps them in difficult situations - what their treasure chests are.” Based on the results, Warschburger and her team then developed a questionnaire that about 200 test subjects were able to test, criticize, supplement, and assess. “We wanted to make sure we didn’t forget anything and were asking the right questions.” The full-scale study has now been started. It focuses on three chronic diseases: diabetes, cystic fibrosis and juvenile arthritis - three very different diseases that can all have a major impact on the daily lives of those affected. These are initial factors that insure that the study findings are transferrable to other chronic diseases. In addition, there are established patient registries for all three diseases, which facilitate the researchers’ work enormously. With the help of the clinical partners, participants are currently being recruited to the study. The goal is to have 400 participants altogether who will be extensively informed and interviewed: about their fears, how they deal with their disease, what helps them and about many other aspects. Another survey will follow after a year. “Then we will see how their resources have developed, whether they are stable, how they feel psychologically - and what influence this has on their chronic diseases,” Warschburger explains. The project has gained an additional dynamic through the coronavirus pandemic, which affects chronically ill people as well as people with mental disorders twofold. The psychologists have therefore added relevant sections to the questionnaire. “Because we assume that the coronavirus crisis will also have an impact,” she says.
After the surveys have been completed the researchers will analyze the data and develop therapeutic approaches. “Depending on the resources that turn out to be especially relevant, we will be able to focus on the respective procedures,” says the researcher. “Should we concentrate on social support from family and friends or build on optimism and self-efficacy?” The various forms of intervention are then tested in two of the five COACH sub-projects. If the project group is successful, Warschburger’s long-term goal is to find new psychotherapeutic tools in the standard care for chronically ill children and adolescents.
Prof. Petra Warschburger studied psychology at Trier University. Since 2003, she has been Professor of Counseling Psychology at the University of Potsdam.
COACH – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centered Collaborative Healthcare
Participants: University of Potsdam, Charité Berlin, University Hospital Düsseldorf, and Ulm University
Funding: German Federal Ministry of Education and Research (BMBF)
This text was published in the university magazine Portal Wissen - Two 2020 „Health“.