Chronic illness and financial burden in Switzerland (FINK): a protocol for a mixed methods research project
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, develo...
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| Vydáno v: | BMJ open Ročník 14; číslo 11; s. e089743 |
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| Médium: | Journal Article |
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England
British Medical Journal Publishing Group
19.11.2024
BMJ Publishing Group LTD BMJ Publishing Group |
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| ISSN: | 2044-6055, 2044-6055 |
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| Abstract | 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. |
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| AbstractList | 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. Introduction People 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 analysis Transdisciplinary 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 dissemination The 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. People 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.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.Transdisciplinary 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.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.The 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.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. People 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. Transdisciplinary 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. The 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. |
| Author | Schöpf-Lazzarino, Andrea Jurisic, Josip Schwind, Bettina Ribi, Karin Visscher, Rosa M.S. Alder, Elena |
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| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/39566938$$D View this record in MEDLINE/PubMed |
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| Keywords | Quality of Life Chronic Disease Caregiver Burden |
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How to cope with the massive flow of digital information in medical ethics publication-title: Heliyon doi: 10.1016/j.heliyon.2020.e04426 – ident: 2024121219413022000_14.11.e089743.4 – ident: 2024121219413022000_14.11.e089743.50 doi: 10.1007/s11136-018-1842-3 – volume: 16 start-page: 314 year: 2022 ident: 2024121219413022000_14.11.e089743.31 article-title: Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: a systematic review of qualitative studies publication-title: J Cancer Surviv doi: 10.1007/s11764-021-01025-7 – volume: 17 start-page: 361 year: 2019 ident: 2024121219413022000_14.11.e089743.57 article-title: Digital diaries: new uses of PhotoVoice in participatory research with young people publication-title: Child Geogr doi: 10.1080/14733285.2018.1543852 – ident: 2024121219413022000_14.11.e089743.18 doi: 10.1002/cncr.28262 – ident: 2024121219413022000_14.11.e089743.7 doi: 10.6004/jnccn.2019.7305 – ident: 2024121219413022000_14.11.e089743.19 doi: 10.1200/JOP.2013.000971 – ident: 2024121219413022000_14.11.e089743.34 – volume: 29 start-page: 3377 year: 2021 ident: 2024121219413022000_14.11.e089743.21 article-title: Patient and family financial burden associated with cancer treatment in Canada: a national study publication-title: Support Care Cancer doi: 10.1007/s00520-020-05907-x – volume: 30 start-page: 217 year: 2022 ident: 2024121219413022000_14.11.e089743.28 article-title: Correlates of financial toxicity in adult cancer patients and their informal caregivers publication-title: Support Care Cancer doi: 10.1007/s00520-021-06424-1 – ident: 2024121219413022000_14.11.e089743.45 doi: 10.1002/cncr.28814 – volume: 14 year: 2021 ident: 2024121219413022000_14.11.e089743.46 article-title: Re-Validation of the COmprehensive Score for Financial Toxicity (COST): Assessing the Scale’s Utility in Chronic Disease Populations publication-title: Health Serv Insights doi: 10.1177/11786329211057352 – volume: 29 start-page: 945 year: 2020 ident: 2024121219413022000_14.11.e089743.27 article-title: Cancer survivors’ experiences with financial toxicity: A systematic review and meta-synthesis of qualitative studies publication-title: Psychooncology doi: 10.1002/pon.5361 – ident: 2024121219413022000_14.11.e089743.38 – volume: 15 start-page: 651 year: 2020 ident: 2024121219413022000_14.11.e089743.52 article-title: Comparing the German Translation of the ICECAP-A Capability Wellbeing Measure to the Original English Version: Psychometric Properties across Healthy Samples and Seven Health Condition Groups publication-title: Applied Research Quality Life doi: 10.1007/s11482-018-9681-5 – ident: 2024121219413022000_14.11.e089743.55 doi: 10.1177/1090198109342084 – volume: 27 start-page: 759 year: 2021 ident: 2024121219413022000_14.11.e089743.33 article-title: Finanzielle Toxizität einer Krebserkrankung publication-title: Onkologe doi: 10.1007/s00761-021-00931-w |
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| Snippet | IntroductionPeople with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects of... People with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects of daily life.... Introduction People with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects... |
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| SubjectTerms | 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 |
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| Title | Chronic illness and financial burden in Switzerland (FINK): a protocol for a mixed methods research project |
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