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Caring in a digital age: Supporting women undergoing radiotherapy for breast cancer with a digital information tool addressing health literacy, distress, and self-efficacy
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0001-7990-9142
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Sustainable development
00. Sustainable Development, 3. Good health and well-being
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 [en]
Distress, Health Literacy, Self-Efficacy, Digital Health Intervention, Breast Cancer, Radiotherapy, Cancer Care, Co-Design, Person-Centred Care
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-69772ISBN: 978-91-88669-71-1 (print)ISBN: 978-91-88669-72-8 (electronic)OAI: oai:DiVA.org:hj-69772DiVA, id: diva2:1998118
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
List of papers
1. Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool
Open this publication in new window or tab >>Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool
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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
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-54204 (URN)10.1371/journal.pone.0253448 (DOI)000678121400063 ()34270564 (PubMedID)2-s2.0-85110548188 (Scopus ID)GOA;;757107 (Local ID)GOA;;757107 (Archive number)GOA;;757107 (OAI)
Available from: 2021-08-12 Created: 2021-08-12 Last updated: 2025-10-13Bibliographically approved
2. Factors associated with distress over time in women with breast cancer undergoing radiotherapy: insights from a pilot study assessing a digital information tool
Open this publication in new window or tab >>Factors associated with distress over time in women with breast cancer undergoing radiotherapy: insights from a pilot study assessing a digital information tool
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2025 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 33, no 9, article id 781Article in journal (Refereed) Published
Abstract [en]

Purpose A cancer diagnosis and treatment pose significant physical and psychological challenges. The study aimed to explore factors associated with distress over time in women diagnosed with breast cancer undergoing radiotherapy (RT) with access to a digital information tool, specifically examining if factors such as health literacy and self-efficacy had any influence on distress. Methods In this pilot randomised controlled trial, women were assigned to an intervention group (n = 59) with access to a digital information tool or a control group (n = 52). Assessments were conducted at baseline, one week before RT (FU1), one week post- (FU2), and six months after treatment (FU3). Distress was measured at all time points, and associated factors were evaluated at baseline and six months. Results In the intervention group, a statistically significant reduction in distress was observed over time (FU1, p = .009; FU2, p < .001; FU3, p < .001). The control group showed a significant reduction at FU3 (p = .009). Quade's ANCOVA revealed no significant differences between the groups in distress prevalence (F = 3.460, p = .066). No significant changes in health literacy or self-efficacy were observed over time. Conclusion The results indicate no statistically significant effect on distress; however, there is a potential indication of a reduction in distress, suggesting that the digital information tool may offer some benefits. Further research is required to confirm this relationship.

Place, publisher, year, edition, pages
Springer, 2025
Keywords
Distress, Digital health, Health literacy, Digital health literacy, Self-efficacy, Breast cancer, Radiotherapy, Virtual reality
National Category
Nursing Cancer and Oncology
Identifiers
urn:nbn:se:hj:diva-69611 (URN)10.1007/s00520-025-09798-8 (DOI)001549598100001 ()40794292 (PubMedID)2-s2.0-105013352020 (Scopus ID)HOA;;1031370 (Local ID)HOA;;1031370 (Archive number)HOA;;1031370 (OAI)
Available from: 2025-08-25 Created: 2025-08-25 Last updated: 2025-10-13Bibliographically approved
3. Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer: a deductive interview study
Open this publication in new window or tab >>Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer: a deductive interview study
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2023 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Individuals undergoing radiation therapy for breast cancer frequently request information before, throughout and after the treatment as a means to reduce distress. Nevertheless, the provision of information to meet individuals needs from their level of health literacy is often overlooked. Thus, individuals information needs are often unmet, leading to reports of discontent. Internet and digital information technology has significantly augmented the available information and changed the way in which persons accesses and comprehends information. As health information is no longer explicitly obtained from healthcare professionals, it is essential to examine the sequences of the health information process in general, and in relation to health literacy. This paper reports on qualitative interviews, targeting women diagnosed with breast cancer who were given access to a health information technology tool, Digi-Do, before commencing radiation therapy, during, and after treatment. METHODS: A qualitative research design, inspired by the integrated health literacy model, was chosen to enable critical reflection by the participating women. Semi-structured interviews were conducted with 15 women with access to a digital information tool, named Digi-Do, in addition to receiving standard information (oral and written) before commencing radiation therapy, during, and after treatment. A deductive thematic analysis process was conducted. RESULTS: The results demonstrate how knowledge, competence, and motivation influence women's experience of the health information process. Three main themes were found: Meeting interactive and personal needs by engaging with health information; Critical recognition of sources of information; and Capability to communicate comprehended health information. The findings reflect the women's experience of the four competencies: to access, understand, appraise, and apply, essential elements of the health information process. CONCLUSIONS: We can conclude that there is a need for tailored digital information tools, such as the Digi-Do, to enable iterative access and use of reliable health information before, during and after the radiation therapy process. The Digi-Do can be seen as a valuable complement to the interpersonal communication with health care professionals, facilitating a better understanding, and enabling iterative access and use of reliable health information before, during and after the radiotherapy treatment. This enhances a sense of preparedness before treatment starts.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Breast cancer, Digital information tool, Health information process, Radiation therapy, Breast Neoplasms, Cognition, Communication, Female, Humans, Qualitative Research, breast tumor, human, interpersonal communication
National Category
Nursing Cancer and Oncology
Identifiers
urn:nbn:se:hj:diva-62255 (URN)10.1186/s12913-023-09837-2 (DOI)001044350100002 ()37559113 (PubMedID)2-s2.0-85167528711 (Scopus ID)GOA;;898164 (Local ID)GOA;;898164 (Archive number)GOA;;898164 (OAI)
Available from: 2023-08-23 Created: 2023-08-23 Last updated: 2025-10-13Bibliographically approved

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Grynne, Annika

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