https://orcid.org/0000-0003-1728-5025
Abstract
Purpose
Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people’s experiences with treatment burden and their coping strategies.
Patients and Methods
The body mapping method was employed, in which a life-sized outline of someone’s body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers.
Results
The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist.
Conclusion
Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.
Data Sharing Statement
Data are available from the corresponding author upon reasonable request.
Ethics Approval and Informed Consent
The present study complies with the Declaration of Helsinki. All participants provided informed consent at the start of the first workshop. This included the publication of anonymized responses. The Medical Ethics Committee (METc) of the University Medical Centre Utrecht concluded that this study is not a clinical research with human subjects as meant in the Medical Research Involving Human Subjects Act (WMO). Further ethical approval of this study was therefore not required under Dutch legislation. All participants and co-researchers received reimbursement for their contribution to the study.
Acknowledgments
The authors would like to thank Martha Grootenhuis, Tiny van Merode, and Sanne Nijhof for their valuable feedback during all phases of this research project.
Author Contributions
All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.
Disclosure
Dr Femke van Schelven reports grants from Agis Innovatiefonds, during the conduct of the study. Dr Hennie Boeije reports grants from Agis Innovatiefonds, during the conduct of the study. The authors report no conflicts of interest in this work.