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Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool
Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare).ORCID iD: 0000-0001-7990-9142
Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare).ORCID iD: 0000-0003-0976-531X
Jönköping University, School of Health and Welfare, HHJ, Dept. of Rehabilitation. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare). Jönköping University, School of Health and Welfare, HHJ. ARN-J (Aging Research Network - Jönköping).ORCID iD: 0000-0003-2322-8115
Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, Gothenburg, Sweden.
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2021 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 16, no 7 July, article id e0253448Article in journal (Refereed) Published
Abstract [en]

Background Patients diagnosed with cancer who are due to commence radiotherapy, often, despite the provision of a considerable amount of information, report a range of unmet information needs about the treatment process. Factors such as inadequate provision of information, or the stressful situation of having to deal with information about unfamiliar things, may influence the patient’s ability to comprehend the information. There is a need to further advance the format in which such information is presented. The composition of information should be tailored according to the patient’s individual needs and style of learning. Method and findings The PD methodology is frequently used when a technology designed artefact is the desired result of the process. This research is descriptive of its kind and provides a transparent description of the co-design process used to develop an innovative digital information tool employing PD methodology where several stakeholders participated as co-designers. Involving different stakeholders in the process in line with recommended PD activities enabled us to develop a digital information tool that has the potential to be relevant and user-friendly for the ultimate consumer. Conclusions Facilitating collaboration, structured PD activities can help researchers, healthcare professionals and patients to co-design patient information that meets the end users’ needs. Furthermore, it can enhance the rigor of the process, ensure the relevance of the information, and finally have a potential to employ a positive effect on the reach of the related digital information tool.

Place, publisher, year, edition, pages
Public Library of Science , 2021. Vol. 16, no 7 July, article id e0253448
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-54204DOI: 10.1371/journal.pone.0253448ISI: 000678121400063PubMedID: 34270564Scopus ID: 2-s2.0-85110548188Local ID: GOA;;757107OAI: oai:DiVA.org:hj-54204DiVA, id: diva2:1584471
Available from: 2021-08-12 Created: 2021-08-12 Last updated: 2025-10-13Bibliographically approved
In thesis
1. Caring in a digital age: Supporting women undergoing radiotherapy for breast cancer with a digital information tool addressing health literacy, distress, and self-efficacy
Open this publication in new window or tab >>Caring in a digital age: Supporting women undergoing radiotherapy for breast cancer with a digital information tool addressing health literacy, distress, and self-efficacy
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

A breast cancer diagnosis often brings profound emotional, physical, and practical challenges. Navigating treatment requires engagement with complex health information, yet emotional strain and differences in health literacy can hinder understanding and heighten distress. Radiotherapy, a central part of treatment, imposes specific demands that call for tailored preparation and support.

The aim of this work was to develop and evaluate a digital information tool to support women undergoing radiotherapy. The focus was on how such a tool may reduce distress and support self-efficacy through tailored information responsive to diverse health literacy needs. Co-designed with stakeholders to ensure rigour, relevance, and reach, the tool combines virtual reality technology, enabling users to familiarise themselves with the radiotherapy environment, with accessible, user-friendly information. This thesis comprises four sub-studies: Paper I details the participatory design process; Paper II reports a pilot randomised controlled trial; Paper III explores women’s experiences of the tool and their broader information processes through qualitative interviews; and Paper IV applies exploratory data analysis to identify distress patterns across patient subgroups. An integrative synthesis combined these findings to reveal mechanisms through which the tool influenced understanding, emotional responses, and engagement.

The findings demonstrate that digital health interventions can complement, rather than replace, in-person consultations, supporting knowledge, sense of control, and active participation in care. Participants reported clear benefits, highlighting the tool’s adaptability, its capacity to reduce uncertainty, and its shareability with loved ones. While statistical analyses did not show significant effects, the experiential benefits underscore the clinical relevance of digital solutions, indicating their potential to enhance comprehension and support patients throughout complex treatments such as radiotherapy.

Abstract [sv]

En bröstcancerdiagnos innebär ofta omfattande känslomässiga, fysiska och praktiska utmaningar. Att navigera behandlingen kräver förståelse för komplex information, något som kan försvåras av känslomässig belastning och skillnader i hälsolitteracitet. Strålbehandling, en central del av behandlingen, ställer särskilda krav och förutsätter individanpassad förberedelse och stöd. Syftet med denna avhandling var att utveckla och utvärdera ett digitalt informationsverktyg för kvinnor som genomgår strålbehandling för bröstcancer. Verktyget, framtaget i samarbete med patienter och vårdpersonal, kombinerar virtual reality-teknik med lättillgänglig och individanpassad information. Deltagarna upplevde flera fördelar, särskilt verktygets förmåga att minska osäkerhet samt att främja förståelse och engagemang i vården. Avhandlingen bygger på fyra delstudier som tillsammans visar att verktyget kan bidra till ökad känsla av kontroll och trygghet. Deltagarna uppskattade dess anpassningsbarhet och möjligheten att dela information med närstående. Resultaten indikerar också att digitala lösningar kan komplettera fysiska möten, stärka kunskap och delaktighet, samt ha klinisk relevans även när statistiskt signifikanta effekter inte alltid kan påvisas.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2025. p. 96
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 148
Keywords
Distress, Health Literacy, Self-Efficacy, Digital Health Intervention, Breast Cancer, Radiotherapy, Cancer Care, Co-Design, Person-Centred Care
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-69772 (URN)978-91-88669-71-1 (ISBN)978-91-88669-72-8 (ISBN)
Public defence
2025-10-10, Forum Humanum, School of Health and Welfare, Jönköping, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2025-09-19 Created: 2025-09-15 Last updated: 2025-10-13Bibliographically approved

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Grynne, A.Browall, MariaFristedt, Sofi

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HHJ, Dept. of Nursing ScienceHHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare)HHJ, Dept. of RehabilitationThe Jönköping Academy for Improvement of Health and WelfareHHJ. ARN-J (Aging Research Network - Jönköping)
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