Op Koers - The Experience and Effect of a Digital Support Program for Adolescents with Chronic Illness and Their Parents
Short description
Today, approximately 20% of children and adolescents are living with a chronic disease. This is defined as a long-term somatic condition or recurring episodes of illness that, at present, cannot be cured. The focus of treatment is on alleviating and reducing symptoms. This group shows an increased prevalence of psychosocial symptoms, a trend that is also observed among their parents. The project’s objective is to evaluate the effectiveness and experience of a unique group-based psychosocial support program, ‘Op Koers’, which was developed in the Netherlands specifically for this demographic. The project aims to enhance our understanding of how this program operates within a Swedish context. This could potentially facilitate its integration into pediatric healthcare in Sweden, thereby improving the quality of life.
The project’s objective is to evaluate the effectiveness and experience of a unique group-based psychosocial support program, ‘Op Koers’, which was developed in the Netherlands specifically for this demographic.
To implement the project, a Swedish version of the program, ‘Op Koers’, will be created. This manual-based program is built on Cognitive Behavioral Therapy (CBT). In the Netherlands, there are different versions of the program, including face-to-face and digital formats, as well as versions for younger children and adolescents. The version of the program that will be evaluated in the planned research project is the digital one, which is aimed at adolescents and their parents.
In the target group, it is more common to experience difficulties, such as anxiety and depression, which can develop into psychiatric symptoms, than in the general population. These psychosocial difficulties can lead to challenges in adhering to and managing their medical treatment. This can result in a deteriorated medical condition, increased suffering for the young person and their family, and a greater demand for healthcare resources.
‘Op Koers’, which aims to both prevent and treat psychological and social difficulties and symptoms, and contribute to an increased quality of life, will be tested within the framework of the clinical activities at Queen Silvia’s Children’s and Youth Hospital. The purpose is to evaluate the effect of the program and the participants’ experience of it in a Swedish context, and to further investigate how the program can lead to improved quality of life, one of the positive results from previous studies.
‘Op Koers’ is aimed at several diagnostic groups, meaning that even young people with rare diagnoses can participate. While psychosocial treatment interventions are often developed for specific diagnostic groups, studies show that the similarities are greater than the differences between different chronic disease conditions regarding the psychosocial challenges that arise. The fact that ‘On the Way’ is a treatment intervention aimed at several young people with chronic diseases and their parents means that many could potentially have access to a preventive and therapeutic intervention that is not currently available. The digital and group format of the method makes it even more accessible across the country and potentially more effective - more individuals can be treated simultaneously. The research will contribute added value by evaluating and increasing knowledge about this unique treatment intervention for the target group, given that it is both preventive and therapeutic, and delivered in a digital group format.
If you wish to know more about the project please contact
Elisabet Bergenmar Ivarsson
Project coordinator, doctoral student, Lic psych
elisabet.ivarsson@vgregion.se
