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Connecting Lives: Designing Customized ICT Solutions for Social isolation and Loneliness among People living with Parkinson’s - A User-Centered Design Science Research
Örebro University, Örebro University School of Business.ORCID iD: 0000-0003-4314-2052
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Human beings are inherently social creatures, wired biologically and psychologically to seek connections with others. When deprived of social interactions, individuals may experience social isolation and loneliness, leading to various psychological and physiological consequences. People living with Parkinson’s disease (PwP) are particularly vulnerable to these issues due to the nature of their health condition. Information and communication technologies (ICT) have been shown to play an important role in managing social isolation and loneliness. However, it is crucial to recognize that a one-size-fits-all approach may not be effective for all individuals or groups. Instead, ICT solutions must be customized to meet the unique needs, experiences, and preferences of different individuals. Currently, there is a lack of ICT solutions for managing social isolation and loneliness among PwP. Therefore, this thesis aims to address this gap by exploring and designing a customized ICT solution for PwP. To do this, the research presented in this thesis integrates design science research (DSR) and user centred design (UCD) methodologies, employing qualitative interviews, focus group discussions, literature reviews, usability evaluations and co-design workshops. Challenges and needs of PwP were identified and used to develop an initial set of design principles, personas, and scenarios. Subsequently, a prototype was developed, demonstrated, and evaluated with both experts and PwP. The design principles and the prototype were refined in four design cycles. The thesis contributes to both research and practice by producing a prototype as an artefactual contribution and the design principles which represents the first step towards the development of nascent design theory, thereby contributing to a prescriptive knowledge base. Furthermore, the integration of DSR with UCD contributes to an enhanced understanding of how to effectively combine these methodologies to design ICT solutions for PwP. The insights gained also offer valuable implications for the generalizability of these methodologies, extending their applicability to a wider user demographic, such as older adults in general.

Place, publisher, year, edition, pages
Örebro: Örebro University , 2024. , p. 219
Series
Örebro Studies in Informatics ; 23
Keywords [en]
Social isolation, Loneliness, Information and communication technologies, Design science research, User-centred design, User-centred design science research, Parkinson’s disease
National Category
Information Systems, Social aspects
Identifiers
URN: urn:nbn:se:oru:diva-115692ISBN: 9789175295763 (print)ISBN: 9789175295770 (electronic)OAI: oai:DiVA.org:oru-115692DiVA, id: diva2:1893628
Public defence
2024-10-16, Örebro universitet, Hörsalen, Musikhögskolan, Fakultetsgatan 1, Örebro, 13:15 (English)
Opponent
Supervisors
Available from: 2024-08-30 Created: 2024-08-30 Last updated: 2024-10-01Bibliographically approved
List of papers
1. Customized Information and Communication Technology for Reducing Social Isolation and Loneliness Among Older Adults: Scoping Review
Open this publication in new window or tab >>Customized Information and Communication Technology for Reducing Social Isolation and Loneliness Among Older Adults: Scoping Review
2022 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 9, no 3, article id e34221Article, review/survey (Refereed) Published
Abstract [en]

BACKGROUND: Advancements in science and various technologies have resulted in people having access to better health care, a good quality of life, and better economic situations, enabling humans to live longer than ever before. Research shows that the problems of loneliness and social isolation are common among older adults, affecting psychological and physical health. Information and communication technology (ICT) plays an important role in alleviating social isolation and loneliness.

OBJECTIVE: The aim of this review is to explore ICT solutions for reducing social isolation or loneliness among older adults, the purpose of ICT solutions, and the evaluation focus of these solutions. This study particularly focuses on customized ICT solutions that either are designed from scratch or are modifications of existing off-the-shelf products that cater to the needs of older adults.

METHODS: A scoping literature review was conducted. A search across 7 databases, including ScienceDirect, Association for Computing Machinery, PubMed, IEEE Xplore, PsycINFO, Scopus, and Web of Science, was performed, targeting ICT solutions for reducing and managing social isolation and loneliness among older adults. Articles published in English from 2010 to 2020 were extracted and analyzed.

RESULTS: From the review of 39 articles, we identified 5 different purposes of customized ICT solutions focusing on reducing social isolation and loneliness. These were social communication, social participation, a sense of belonging, companionship, and feelings of being seen. The mapping of purposes of ICT solutions with problems found among older adults indicates that increasing social communication and social participation can help reduce social isolation problems, whereas fulfilling emotional relationships and feeling valued can reduce feelings of loneliness. In terms of customized ICT solution types, we found the following seven different categories: social network, messaging services, video chat, virtual spaces or classrooms with messaging capabilities, robotics, games, and content creation and management. Most of the included studies (30/39, 77%) evaluated the usability and acceptance aspects, and few studies (11/39, 28%) focused on loneliness or social isolation outcomes.

CONCLUSIONS: This review highlights the importance of discussing and managing social isolation and loneliness as different but related concepts and emphasizes the need for future research to use suitable outcome measures for evaluating ICT solutions based on the problem. Even though a wide range of customized ICT solutions have been developed, future studies need to explore the recent emerging technologies, such as the Internet of Things and augmented or virtual reality, to tackle social isolation and loneliness among older adults. Furthermore, future studies should consider evaluating social isolation or loneliness while developing customized ICT solutions to provide more robust data on the effectiveness of the solutions.

Place, publisher, year, edition, pages
JMIR Publications, 2022
Keywords
ICT, customization, loneliness, mobile phone, older adults, review, social isolation
National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-97847 (URN)10.2196/34221 (DOI)000787096500013 ()35254273 (PubMedID)2-s2.0-85126100204 (Scopus ID)
Funder
European Commission, 754285
Available from: 2022-03-08 Created: 2022-03-08 Last updated: 2025-02-17Bibliographically approved
2. Information and Communication Technology for Managing Social Isolation and Loneliness Among People Living With Parkinson Disease: Qualitative Study of Barriers and Facilitators
Open this publication in new window or tab >>Information and Communication Technology for Managing Social Isolation and Loneliness Among People Living With Parkinson Disease: Qualitative Study of Barriers and Facilitators
2024 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 26, article id e48175Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Parkinson disease (PD) is a complex, noncurable, and progressive neurological disease affecting different areas of the human nervous system. PD is associated with both motor and nonmotor symptoms, which negatively affect patients' quality of life and may cause changes in socialization such as intentional social withdrawal. This may further lead to social isolation and loneliness. The use of information and communication technology (ICT) plays an important role in managing social isolation and loneliness. Currently, there is a lack of research focusing on designing and developing ICT solutions that specifically address social isolation and loneliness among people living with PD.

OBJECTIVE: This study addresses this gap by investigating barriers and social needs in the context of social isolation, loneliness, and technology use among people living with PD. The insights gained can inform the development of effective ICT solutions, which can address social isolation and loneliness and improve the quality of life for people living with PD.

METHODS: A qualitative study with 2 phases of data collection were conducted. During the first phase, 9 health care professionals and 16 people living with PD were interviewed to understand how PD affects social life and technology use. During the second phase, 2 focus groups were conducted with 4 people living with PD in each group to gather insights into their needs and identify ways to manage social isolation and loneliness. Thematic analysis was used to analyze both data sets and identify key themes.

RESULTS: The results showed that the barriers experienced by people living with PD due to PD such as "fatigue," "psychological conditions," "social stigma," and "medication side effects" affect their social life. People living with PD also experience difficulties using a keyboard and mouse, remembering passwords, and navigating complex applications due to their PD-related physical and cognitive limitations. To manage their social isolation and loneliness, people living with PD suggested having a simple and easy-to-use solution, allowing them to participate in a digital community based on their interests, communicate with others, and receive recommendations for social events.

CONCLUSIONS: The new ICT solutions focusing on social isolation and loneliness among people living with PD should consider the barriers restricting user's social activities and technology use. Given the wide range of needs and barriers experienced by people living with PD, it is more suitable to adopt user-centered design approaches that emphasize the active participation of end users in the design process. Importantly, any ICT solution designed for people living with PD should not encourage internet addiction, which will further contribute to the person's withdrawal from society.

Place, publisher, year, edition, pages
JMIR Publications, 2024
Keywords
ICT, Parkinson disease, information and communication technology, loneliness, social isolation
National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-111017 (URN)10.2196/48175 (DOI)001164727000001 ()38231548 (PubMedID)2-s2.0-85182768739 (Scopus ID)
Funder
EU, Horizon 2020
Note

This project received funding from the European Union’s Horizon 2020 research and innovation program under the MarieSklodowska-Curie.

Available from: 2024-01-26 Created: 2024-01-26 Last updated: 2025-02-17Bibliographically approved
3. Management of social isolation and loneliness in Parkinson’s disease: Design principles
Open this publication in new window or tab >>Management of social isolation and loneliness in Parkinson’s disease: Design principles
2023 (English)In: International Conference on Information Systems (ICIS 2023): Rising like a Phoenix: Emerging from the Pandemic and Reshaping Human Endeavors with Digital Technologies, Association for Information Systems (AIS), Association for Information Systems (AIS) , 2023, article id 2169Conference paper, Published paper (Refereed)
Abstract [en]

Persons with Parkinson’s disease (PwPs) may have difficulty participating in social activities due to motor and non-motor symptoms that may lead to social isolation and loneliness. This paper addresses how to manage social isolation and loneliness among PwPs using digital solutions. Information and Communication Technologies (ICT) have the potential to address social isolation and loneliness, but there are no current solutions that specifically target these issues among PwPs. In this paper, we present an ongoing project based on design science research (DSR) combined with a user-centered approach to identify challenges, requirements, and design objectives. The empirical work includes data from interviews and focus groups with PwPs and healthcare professionals. Based on the empirical material, we formulated design principles on identified challenges and requirements, which were instantiated into a high-fidelity prototype. This initial cycle serves as a foundation for ongoing improvements and evaluations in a continuous DSR process.

Place, publisher, year, edition, pages
Association for Information Systems (AIS), 2023
Keywords
Social isolation, loneliness, Information and Communication Technologies, design science research, user-centered design, design principles
National Category
Gerontology, specialising in Medical and Health Sciences Other Engineering and Technologies
Research subject
Informatics; Human-Computer Interaction
Identifiers
urn:nbn:se:oru:diva-111049 (URN)2-s2.0-85192559354 (Scopus ID)9781958200070 (ISBN)9781713893622 (ISBN)
Conference
44th International Conference on Information Systems (ICIS 2023): "Rising like a Phoenix: Emerging from the Pandemic and Reshaping Human Endeavors with Digital Technologies", Hyderabad, India, December 10-13, 2023
Funder
EU, Horizon 2020, 754285
Available from: 2024-01-25 Created: 2024-01-25 Last updated: 2025-02-18Bibliographically approved
4. Information and Communication Technology for managing social isolation and loneliness among people living with Parkinson’s disease: Integrating Design Science Research and User-Centred Design
Open this publication in new window or tab >>Information and Communication Technology for managing social isolation and loneliness among people living with Parkinson’s disease: Integrating Design Science Research and User-Centred Design
(English)Manuscript (preprint) (Other academic)
National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-116226 (URN)
Available from: 2024-09-23 Created: 2024-09-23 Last updated: 2024-09-23Bibliographically approved

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Thangavel, Gomathi

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