Exploring the meaning, role and experiences of a patient-led social innovation for people affected by cancer: a new collaborative care model complementing traditional cancer rehabilitation in SwedenShow others and affiliations
2021 (English)In: BMJ Open Quality, E-ISSN 2399-6641Article in journal (Refereed) Published
Abstract [en]
Objective: Kraftens Hus is the first support centre in Sweden designed by and for people affected by cancer, including patients, family, friends, staff members and local community representatives (collectively ‘stakeholders’). The purpose of this study was to explore the meaning, role and experiences of Kraftens Hus stakeholders using a patient and public involved methodology.
Methods: To understand and map the experiences of visitors to Kraftens Hus, we applied concept mapping (CM), a mixed methods approach where data are collected and analysed in four structured steps designed to capture the diverse perspectives of multiple stakeholders. Qualitative interviews with relevant stakeholders supplemented the CM findings.
Results: The final concept map contained six clusters of ideas. Within the clusters, there was a recurring theme that cancer-affected people value accessible and long-term psychosocial support (PSS). The intended emotional, social and practical needs identified in a previous design process seem to have been addressed and appreciated by Kraftens Hus visitors.
Conclusion: Kraftens Hus is an example of a new patient-led social innovation based on a life-event perspective and integration of resources from different sectors in society. By focusing on life, not the disease, the care continuum expands, and long-term PSS is provided alongside cancer treatment. The evaluation confirms that PSS should focus on health and well-being in the broadest sense.
Place, publisher, year, edition, pages
2021.
Keywords [en]
Public Health, Environmental and Occupational Health, Health Policy, Leadership and Management
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:hb:diva-26948DOI: 10.1136/bmjoq-2021-001400OAI: oai:DiVA.org:hb-26948DiVA, id: diva2:1614823
2021-11-272021-11-272021-11-30Bibliographically approved