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Co-creating self-care: Experiences of self-care and usage of eHealth among older adults with chronic illness, informal carers, and healthcare professionals
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. (ReAction)ORCID iD: 0000-0003-2150-3822
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Sustainable development
SDG 3: Ensure healthy lives and promote well-being for all at all ages
Abstract [en]

Aim: To explore the co-creation of self-care and the use of eHealth among older adults with chronic illness, their informal carers, and healthcare professionals. Methods: This thesis employed various qualitative methods across four studies. Study I aimed to clarify the concept of “self-care monitoring” from a patient perspective through a concept analysis based on a systematic search of peer-reviewed articles from four databases. Study II aimed to describe patients’ and informal carers’ experiences of self-care management and the use of telemonitoring applications, using semi-structured telephone interviews analyzed by qualitative content analysis. Study III aimed to co-create and test a video feedback tool for self-care at home, using an experience-based co-design approach that facilitated collaboration between pairs of older adults, researchers, and service designers through three iterative steps: workshops, development and refinement, and usability testing. Data were analyzed using thematic analysis, employing both inductive and deductive approaches. Study IV aimed to describe healthcare professionals’ experiences of motivating self-care, utilizing individual narrative interviews analyzed by a phenomenological-hermeneutic approach. Results: Study I clarified the concept of “self-care monitoring”, resulting in the definition: “Self-care monitoring is an activity that means a person has to pay attention and be confident and needs routines for tracking symptoms, signs, and action.” Study II described self-care management with telemonitoring at home, captured by the theme “Developing the capability to perform self-care with technology as both an intruder and an invited guest.” Telemonitoring supported skill acquisition and engagement with healthcare professionals but also introduced uncertainties in symptom interpretation and exclusion. Study III co-created and tested two new self-care exercises within the video feedback tool: “Breathing exercises” and “Picking up from the floor.” Older adults found the exercises and feedback valuable for learning, particularly in highlighting movement variability through performance comparison. Study IV described healthcare professionals’ experiences of motivating self-care, revealing “Co-creating sustainable self-care responsibilities” as the main theme, encompassing empowerment through mutuality, reassigning responsibility, and using oneself as a creative tool. Conclusion: This thesis highlights co-created self-care as a dynamic, empowering process shaped by collaboration, shared responsibility, and active engagement among older adults with chronic illness, informal carers, and healthcare professionals. Engagement in self-care strengthens through interactive approaches like peer support, video feedback, and telemonitoring, enhancing motivation, confidence, and adherence. Future research should focus on long-term engagement strategies and integrating eHealth into primary care to improve co-created self-care.

Place, publisher, year, edition, pages
Växjö: Linnaeus University Press , 2025. , p. 125
Series
Linnaeus University Dissertations ; 562
Keywords [en]
chronic illness, co-creation, eHealth, experiences, healthcare professionals, informal carer, older adults, peer support, primary care, qualitative, self-care
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-137079DOI: 10.15626/LUD.562.2025ISBN: 978-91-8082-278-7 (print)ISBN: 978-91-8082-279-4 (electronic)OAI: oai:DiVA.org:lnu-137079DiVA, id: diva2:1941901
Public defence
2025-04-04, Weber, Universitetetsplatsen 1, Växjö, 10:00 (Swedish)
Opponent
Supervisors
Funder
The Kamprad Family FoundationForte, Swedish Research Council for Health, Working Life and WelfareLinnaeus UniversityAvailable from: 2025-03-04 Created: 2025-03-03 Last updated: 2025-03-04Bibliographically approved
List of papers
1. Cocreation of a Video Feedback Tool for Managing Self-Care at Home With Pairs of Older Adults: Remote Experience-Based Co-Design Study
Open this publication in new window or tab >>Cocreation of a Video Feedback Tool for Managing Self-Care at Home With Pairs of Older Adults: Remote Experience-Based Co-Design Study
2024 (English)In: JMIR Formative Research, E-ISSN 2561-326X, Vol. 8, article id e57219Article in journal (Refereed) Published
Abstract [en]

Background: Involving older adults in co-design processes is essential in developing digital technologies and health care solutions to enhance self-care management at home, especially for older adults with chronic illness and their companions. Remote co-design approaches could provide technologically sustainable solutions that address their personal needs.

Objective: This study aimed to cocreate and test the usability of a video feedback tool to facilitate self-care management at home.

Methods: This experience-based co-design approach involved collaboration between 4 pairs of older adults, 4 researchers, and 2 service designers in three steps: (1) six iterative workshops (5 remote and 1 in person) to cocreate self-care exercises within an existing video feedback tool by identifying factors influencing self-care management; (2) developing and refining the self-care exercises based on suggestions from the older adults; and (3) usability testing of the cocreated exercises with the 4 pairs of older adults in their homes. Among the older adults (68-78 years), 3 adults had heart failure and 1 adult had hypertension. Data were analyzed inductively through thematic analysis and deductively using the USABILITY (Use of Technology to Engage in Adaptation by Older Adults and/or Those With Low or Limited Literacy) framework.

Results: Theidentifiedinfluencingfactorsguidingthecontentsandformatdevelopmentof2newself-careexerciseswerethat pairs of older adults support and learn from each other in performing self-care, which increases their motivation and engagement in practicing self-care at home. The usability test of the 2 new self-care exercises, “Breathing exercises” and “Picking up from the floor,” revealed that the pairs found the exercises and the video feedback component valuable for learning and understanding, for example, by comparison of performances highlighting movement variability. However, they found it difficult to manage the video feedback tool on their own, and a support structure or tailored education or training was requested.

Conclusions: This study emphasizes that the video feedback tool holds the potential to facilitate learning and understanding in self-care management, which may support motivation. The studied video feedback tool can be beneficial for pairs of older adults managing self-care at home as a complement to traditional health care services, but an accurate supporting structure is required. The effectiveness of the video feedback tool and its integration into existing health care services still need to be assessed and improved through careful design and structured support.

Place, publisher, year, edition, pages
JMIR Publications, 2024
Keywords
chronic illness, eHealth, experience-based co-design, older adults, self-care, video feedback
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-133150 (URN)10.2196/57219 (DOI)39466305 (PubMedID)2-s2.0-85207934512 (Scopus ID)
Projects
Stödja patienter och anhöriga i ett aktivt deltagande av egenvård i hemmet
Available from: 2024-10-28 Created: 2024-10-28 Last updated: 2025-03-03Bibliographically approved
2. Self-care management and experiences of using telemonitoring as support when living with hypertension or heart failure: A descriptive qualitative study
Open this publication in new window or tab >>Self-care management and experiences of using telemonitoring as support when living with hypertension or heart failure: A descriptive qualitative study
2023 (English)In: International Journal of Nursing Studies Advances, E-ISSN 2666-142X, Vol. 5, article id 100149Article in journal (Refereed) Published
Abstract [en]

Background The need for support in self-care at home will increase with the growing older population with chronic illness. Many people have one or more chronic illnesses and struggle with self-care activities, often supported by informal carers at home. The rapid development of telemonitoring applications in primary care calls for increased knowledge about how people with chronic illness and their informal carers experience the use of telemonitoring applications at home.

Objective This study aims to describe experiences of self-care management at home when living with hypertension or heart failure, with support from primary care through telemonitoring.

Design A descriptive qualitative approach was applied using semi-structured interviews with patients and informal carers in a pilot project on telemonitoring of chronic illness in primary care from October 2019 to June 2021.SettingParticipants were recruited from three primary care settings and one medical department at one hospital in a region in southern Sweden.ParticipantsA purposive sample of patients (n = 20) with chronic illness living at home and their informal carers (n = 4) were recruited.

Methods Semi-structured telephone interviews were conducted, guided by open-ended questions targeting patients’ and informal carers’ experiences of self-care management at home and using telemonitoring applications as support. Transcribed interviews were analyzed through qualitative content analysis.

Results ’Developing the capability to perform self-care with technology as both an intruder and an invited guest’ was the unifying theme that tied together the experiences of patients with chronic illness and their informal carers. Experiences of self-care management included acquiring necessary self-care skills, expertise in managing their chronic illness, and reciprocal relationships with healthcare professionals when using telemonitoring application as support in self-care monitoring of vital parameters. However, uncertainty regarding the interpretation of symptoms and a feeling of exclusion were seen.

Conclusions Telemonitoring applications offer potential support for patients with chronic illnesses and their informal carers, enabling them to establish new routines and enhance motivation for self-care activities at home. This study emphasizes the adaptability of telemonitoring applications in meeting the unique support requirements of patients and informal carers when managing self-care at home.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
Chronic disease, eHealth, Informal caregivers, Patient, Primary care, Qualitative research, Self-care, Telehealth
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-123806 (URN)10.1016/j.ijnsa.2023.100149 (DOI)001064891300001 ()2-s2.0-85172447535 (Scopus ID)
Available from: 2023-08-18 Created: 2023-08-18 Last updated: 2025-03-03Bibliographically approved
3. Delineating and clarifying the concept of self-care monitoring: a concept analysis
Open this publication in new window or tab >>Delineating and clarifying the concept of self-care monitoring: a concept analysis
Show others...
2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2241231Article in journal (Refereed) Published
Abstract [en]

Aim

To delineate and clarify the meaning of the concept of self-care monitoring from a patient perspective.

Methods

A systematic search was performed in the databases ASSIA, CINAHL, PsycInfo, and PubMed (January 2016–September 2021). A selection of 46 peer-reviewed articles was included in the study and analysed using Rodgers’ Evolutionary Method for Concept Analysis.

Results

The following four attributes were identified: Tracking symptoms, signs, and actions, Paying attention, Being confident, and Needing routines, creating a descriptive definition: “Self-care monitoring is an activity that means a person has to pay attention and be confident and needs routines for tracking symptoms, signs, and action.” The antecedents of the concept were shown to be Increased knowledge, Wish for independence, and Commitment. The concepts’ consequences were identified as Increased interaction, Perceived burden, and Enhanced well-being.

Conclusions

This concept analysis provides extensive understanding of self-care monitoring from a patient perspective. It was shown that the concept occurs when a person practices self-care monitoring at home either with or without devices. A descriptive definition was constructed and presented with exemplars to encourage practice of the concept in various healthcare settings and could be of relevance to people with chronic illnesses or other long-term conditions.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
caring, concept analysis, monitoring, person, self-care
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-123386 (URN)10.1080/17482631.2023.2241231 (DOI)001036782100001 ()2-s2.0-85166001212 (Scopus ID)
Available from: 2023-07-29 Created: 2023-07-29 Last updated: 2025-03-03Bibliographically approved

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