Chronic illness and financial burden in Switzerland (FINK): a protocol for a mixed methods research project

• Published in: BMJ open Vol. 14; no. 11; p. e089743
• Main Authors: Ribi, Karin, Schöpf-Lazzarino, Andrea, Visscher, Rosa M.S., Jurisic, Josip, Alder, Elena, Schwind, Bettina
• Format: Journal Article
• Language: English
• Published: England British Medical Journal Publishing Group 19.11.2024; BMJ Publishing Group LTD; BMJ Publishing Group
• Subjects: Cancer; Caregiver Burden; Caregivers; Caregivers - economics; Caregivers - psychology; Chronic Disease; Chronic Disease - economics; Chronic illnesses; Cost of Illness; Diabetes; Field study; Funding; Health care expenditures; Health Services Research; Humans; Medical libraries; Mixed methods research; Musculoskeletal diseases; Neoplasms - economics; Participatory research; Patients; Protocol; Quality of Life; Research Design; Respiratory diseases; Switzerland; Switzerland; United States > US; Quality of Life; Chronic Disease; Caregiver Burden
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2024-089743

IntroductionPeople with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects of daily life. While cancer research has coined the term ‘financial toxicity’ to describe the financial consequences, the understanding, development and operationalisation of the concept of financial burden are still incomplete, particularly regarding subjective financial burden and its relationship with well-being. The overall aim is to investigate financial burden and its implications for the well-being of people living with chronic illness, their families, and caregivers in Switzerland.Methods and analysisTransdisciplinary discussion groups and a participatory action design element frame: (1) a conceptualisation using a hybrid concept analysis approach and (2) an assessment of financial burden of chronic illness in relation to well-being. The hybrid concept analysis combines the results of a scoping review with a secondary analysis of existing interviews using computational linguistics and qualitative analysis. The assessment phase will investigate the extent and nature of financial burden through a nationwide survey. Results from mobile diaries/interviews will contribute to both—the conceptualisation and assessment phases.Ethics and disseminationThe Ethics Committee of the Canton Zurich, Switzerland, did not consider the research project to fall under the Swiss Law on Human Subjects research and issued a waiver (Req-2O23-01496). The project respects all the rules and regulations in the Swiss Federal Act on Data Protection and those by the Swiss Federal Official Responsible for Data Protection and Transparency. Results will be disseminated through presentations at conferences and publications in peer-reviewed journals and through the established multi-stakeholder network.