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Full Chapter Well Being in The Information Society Fruits of Respect 8Th International Conference Wis 2020 Turku Finland August 26 27 2020 Proceedings Mirella Cacace PDF
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Mirella Cacace · Raija Halonen ·
Hongxiu Li · Thao Phuong Orrensalo ·
Chenglong Li · Gunilla Widén ·
Reima Suomi (Eds.)
Well-Being in the
Information Society
Fruits of Respect
8th International Conference, WIS 2020
Turku, Finland, August 26–27, 2020
Proceedings
Communications
in Computer and Information Science 1270
Commenced Publication in 2007
Founding and Former Series Editors:
Simone Diniz Junqueira Barbosa, Phoebe Chen, Alfredo Cuzzocrea,
Xiaoyong Du, Orhun Kara, Ting Liu, Krishna M. Sivalingam,
Dominik Ślęzak, Takashi Washio, Xiaokang Yang, and Junsong Yuan
Well-Being in the
Information Society
Fruits of Respect
8th International Conference, WIS 2020
Turku, Finland, August 26–27, 2020
Proceedings
123
Editors
Mirella Cacace Raija Halonen
Catholic University of Applied Sciences University of Oulu
Freiburg, Germany Oulu, Finland
Hongxiu Li Thao Phuong Orrensalo
Tampere University Åbo Akademi University
Tampere, Finland Turku, Finland
Chenglong Li Gunilla Widén
University of Turku Åbo Akademi University
Turku, Finland Turku, Finland
Reima Suomi
University of Turku
Turku, Finland
This Springer imprint is published by the registered company Springer Nature Switzerland AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Preface
The first international conference on Well-being in the Information Society (WIS) was
introduced in 2006. The current conference (WIS 2020) is already the 8th biannual
implementation of the series. WIS 2020 was organized by University of Turku in
cooperation with Åbo Akademi University, Tampere University, Turku University of
Applied Sciences, and the Finnish National Institute for Health and Welfare. WIS 2020
was implemented under the topic “Fruits of Respect” in Turku, August 2020. Along
with years passing and new smart technology developed, the role of respect and related
values deserve special attention when designing new applications and solutions for
individuals and organizations. With this topic we wanted to emphasize respect, espe-
cially from its human, concerning, and encouraging nature, and see its importance
when building an information society.
Due to the special times of the COVID-19 pandemic, the conference was arranged
predominately online.
The submitted papers consisted of academic contributions on the topics of inter-
section of health, ICT, and fruits of respect as seen from different directions and
contexts. The number of submissions remained smaller than during the previous WIS
implementations, which we interpreted as due to the difficult situation globally at the
time and related restrictions that were constantly changing and frequently updated
internationally. However, thanks to the international reviewers, we were able to accept
19 papers to be presented at the conference and to be included in the conference
program. We are grateful for the efforts of the reviewers in identifying relevant and
topical research papers for WIS 2020.
The proceedings are structured in four sections as follows:
I. Improving Quality and Containing Cost in Health Care and Care for the
Elderly by Using Information Technology
Part I of this collection reflects ethical considerations in the use of information and
communication technology (ICT) in health care and care for the elderly. Essentially,
this part asks how health care processes can be improved by using ICT to benefit health
care consumers, and what the implications are.
In their contribution, Nilmini Wickramasinghe and Rima Gibbings point out that
coordination and integration of services are essential for delivering high-quality care in
the US health care system. Digitalization offers opportunities for improved scheduling
and tracking, but achieving these objectives is impossible without involving the patient.
Understanding patients’ needs is of particular interest for providing access to vulner-
able populations, such as the elderly or lower socio-economic groups.
As Sio Lai Karppinen, Jori Karppinen, and Raija Halonen point out, in particular the
needs of the elderly tend to be neglected when it comes to the design of services. This
is a major conceptual shortcoming, as this population group is receiving the bulk of
care provided by the health care system. Not only is the number of elderly people
vi Preface
growing, but also the incidence of dementia. In their contribution, the authors study
non-pharmacologic solutions to support people suffering from dementia and their
caretakers.
The elderly and their special needs are also the focus of the contribution by Konsta
Rantakangas and Raija Halonen. By reviewing the state-of-the-art literature, the authors
start by identifying several special characteristics of the elderly caused by high age or
diagnosed reasons such as memory-related diseases. Core recommendation will need to
search for ways to let the elderly participate in the development, which is crucial to
mitigate the challenges they face when using web-based services.
The issue of participation and consumer involvement is also highly salient when the
users are the main sources of data generation themselves, i.e., in the case of self-
collected devices. Looking at occupational programs and health insurers, Stefan Ste-
panovic shows the crucial importance of motivating users in order to obtain complete
and reliable data. Gamification and financial incentives may be useful instruments in
the short run, but they are rarely sustainable. With his contribution, the author identifies
the main motivational incentives potentially leading to the development of effective
digital programs.
The collection of data and knowledge generation are not an end in itself, they are
subordinate to other objectives, such as improving processes and outcomes. However,
orientation in the ‘data jungle’ becomes increasingly difficult the more information is
available. To minimize information losses, it is of particular importance to agree on
common terms and expressions. By studying the multiple understandings of private
health records through a systematic literature review, Jani Koskinen and Minna Ran-
tanen show how far we are away from such a common understanding. According to
these authors, a clear and systematic structure is necessary, and discourses about core
ideas in health care are essential to benefit from technical innovation.
Public health systems, in particular, are held accountable to use funds from col-
lective, tax-funded sources prudently. Therefore, when aiming at improving the value
of health care, cost considerations must apply. According to Olli Sjöblom, Sonja
Turnbull-Smith, Heikki Minn, and Jani Keyriläinen, the objects of saving costs and
achieving high-quality care are not necessarily mutually exclusive; it is possible to
align these concepts. Taking the example of radiotherapy, the authors show how
providers have focused on reducing costs by applying methods that do not cause
adverse effects on health-care quality to achieve value-based outcomes.
II. Collecting the Fruits of Respect in Entrepreneurship and Management of
Organizations
Part II discusses the sub-theme of the conferences in three papers:
The contribution by Mari Hartemo and Mika Suutari was motivated by a ‘demo-
cratic deficit’ and the imperative of participative leadership in a university setting. By
applying the theoretical framework of the International Association of Public Partici-
pation (inform, consult, involve, collaborate, and empower) they seek to explore the
potential of digitalization to improve participation of employees. As this seems to be a
quite frequently encountered deficit, their results might be of value for other organi-
zations as well.
Preface vii
As the importance of data is growing, so does the role of data economy ecosystems.
The analysis by Minna Rantanen and Jani Koskinen shows that individuals should be
respected as active members of data economy ecosystems by providing tools and
information through transparent, honest, and secure practices. The authors conclude
that transparency seems to be the prime enabler of value congruence and thus also the
fundamental basis for respecting individuals.
Blockchain is a recent development in technology, which allows a cryptographically
secured, decentralized, and distributed storage of data. As Sami Hyrynsalmi, Sonja M.
Hyrynsalmi, and Kai K. Kimppa point out, while this technology has potentially a
remarkable power to shape the modern digital societies, its usage provokes several
ethical questions. Based on a systematic literature study, the authors show that a deep
understanding of relevant ethical concerns is required when using this technology.
IV. Bridging the Digital Divide: Strengthening (Health-) Literacy and Supporting
Trainings in Information Society
Part IV introduces five papers pointing out challenges related to the digital divide:
In order to bridge the digital divide, a reflection of the principles and definitions
guiding the research on this subject is required. A major issue here is to understand
what distinguishes digital natives from digital immigrants. By referring to the educa-
tional context, Milla Aavakare and Shahrokh Nikou criticize that this distinction cur-
rently is bound solely to the age factor. As this distinction is falling short, their study
aims to look beyond age as a divider. Their results show that digital literacy and
technology acceptance is a competence that depends on the access, frequency of use,
and the ability to use digital technologies. In conclusion, the interactions of individuals
with digital technologies should be used for classification instead.
The study by Brita Somerkoski, Päivi Granö, and Teija Koskela investigates how
international students are reflecting on the physical and psychological dimensions of
learning environments. The qualitative research design examined 20 training portfolios
that the trainees used during the practical training in their homeland in the Southern
African region. As a result, the trainees successfully managed strategies such as self-
reporting, discussions in groups, learning cafés, and teamwork. Regarding the physical
learning environment, the scarcity of materials in their homeland made some of them
replace technical devices with other learning materials in order to bridge the digital
divide.
As the population is ageing, immigrants will be an important source of labor in the
future. The contribution by Saaga Somerkoski assesses the attitudes among Finnish
second grade students towards immigrants in a region where the number of immigrants
currently is one of the lowest in Finland. Attitudes were mixed, with the immigration of
children and workers being regarded more positively compared to unemployed
migrants and refugees. No respondent reported about immigration as a positive phe-
nomenon. These results are quite remarkable given the problem of a quickly ageing
population also in that region.
In a quantitative survey, the study by Ágústa Pálsdóttir collected information about
satisfaction with a new technology that was implemented nationwide in Iceland. The
new health information and communication technology includes information about
health history and healthy lifestyle of the user. In order to investigate acceptance of the
Preface ix
technology, the author questioned people aged between 18 and 60 years in an online
survey, and individuals 60 years and older by telephone. The results show that it is
of the utmost importance to accompany the introduction of new health information and
communication technology by trainings as well as proper technical support.
As a major effort to make use of information technology in health care thereby
bridging the digital divide, Heini Utunen presents the World Health Organization’s
(WHO) ePROTECT. The project is an occupational health and safety online briefing
for the Ebola Virus. The program has become a key resource in battling the disease at
the frontline in different professional roles in various organizations. Broad access is
secured via an open-source online platform adjusted for low-bandwidths, and appli-
cations with mobile and download capabilities.
We want to express our deepest gratitude to our organizing institutions that have
constantly supported us with the conference in several ways. We also want to thank the
Finnish Foundation for Economic Education for financial support, all the authors for
contributions, and all the reviewers for their quality assured work. Our conference
management group, with the addition of our editor group consisting of Katja Heikki-
nen, Jukka Kärkkäinen, Marja Rautajoki, Sanna Salanterä, Brita Somerkoski, and
Tapio Vepsäläinen, also deserves a big thanks. The conference program, in addition to
the academic papers, was enriched by keynotes by Tobias Mettler and Liisa-Maria
Voipio-Pulkki. Finally, we are grateful to Springer for again accepting our proceedings
for publication, and especially to editorial director Aliaksandr Birukou who has always
encouraged us during the process. As has been the case since WIS 2006, the organizers
look forward to the next biannual WIS in 2022 with a fresh subtopic and a lot of
interesting contributions and people from all around the world.
Organizing Committee
Suomi, Reima University of Turku, Finland
(Conference Chair)
Li, Chenglong University of Turku, Finland
(Organizing Committee chair)
Cacace, Mirella Catholic University of Applied Sciences Freiburg,
(Program Co-chair) Germany
Halonen, Raija University of Oulu, Finland
(Program Co-chair)
Heikkinen, Katja Turku University of Applied Science, Finland
Kärkkäinen, Jukka The National Institute for Health and Welfare,
Finland
Li, Hongxiu Tampere University, Finland
Rautajoki, Marja University of Turku, Finland
Salanterä, Sanna University of Turku, Finland
Somerkoski, Brita University of Turku, Finland
Vepsäläinen, Tapio University of Turku, Finland
Widén, Gunilla Åbo Akademi University, Finland
Program Committee
Ahonen, Pia Turku University of Applied Sciences, Finland
Aromaa, Minna City of Turku, Finland
Cabral, Regis Funding for European Projects, Sweden
Carmichael, Laurence The University of the West of England, UK
Cellary, Wojceich Poznan University of Economics, Poland
Eriksson-Backa, Kristina Åbo Akademi University, Finland
Eskola, Eeva-Liisa Åbo Akademi University, Finland
Gan, Chunmei Sun Yat-Sen University, China
Gea-Sànchez, Montserrat University of Turku, Finland
Hansen, Preben Stockholm University, Sweden
Heikkinen, Katja Turku University of Applied Sciences, Finland
Hupli, Maija University of Turku, Finland
Hyrkkänen, Ursula Turku University of Applied Sciences, Finland
Kangasniemi, Mari University of Turku, Finland
Karukivi, Max University of Turku, Finland
Kini, Ranjan Indiana University Northwest, USA
Klein, Stefan University of Muenster, Germany
Kokol, Peter University of Maribor, Slovenia
Lamersdorf, Winfried University of Hamburg, Germany
xii Organization
1 Introduction
The purpose of this study was to find knowledge about the current problems and non-
pharmaceutical solutions of people suffering from dementia, and of their caregivers in
Finland. This research study was based on a request by a local association in Finland for
seeking a solution to maintain relationships between dementia patients, their spouses
and caretakers. Based on the findings, an innovative Serious Games package was to be
created and the impact of using this artefact on dementia patients and their caretakers to
be studied.
There are approximately 50 million people worldwide diagnosed with dementia and
the number of dementia cases is increasing year by year all over the world. In 2050 there
will be 152 million people impacted by dementia [1].
The main reasons for adopting non-pharmaceutical interventions are to minimize
the drug–drug interactions and their side effects for using medicine on patients as well
as overcoming limitations in pharmaceutical solutions for intervention [2].
In this study, we were looking for the most important issues which disturb the patient
community’s life. Moreover, we wanted to know what the current solutions are and which
activities are organized for them in Finland. Based on the findings, an innovative serious
games package will be created and the impact of using this artifact on dementia patients
and their caretakers will be studied. The initiatives of this research project was to find out
the elements for building an artefact to be developed in the future. The aim in creating
this artefact was to offer healthier and better care, and to enhance the quality of life.
2 Earlier Knowledge
2.1 Current Challenges for the World, Dementia Patients and Caretakers
Alzheimer’s Disease International, a non-profit organisation, has estimated that the
global costs of dementia in 2015 were US$818 billion [3], and the average cost of taking
care of a dementia patient is around 81% higher than patients with other conditions, such
as heart disease, cancer or stroke [4, 5]. These costs can be separated into direct costs,
including in-patient treatment, institutional care, nursing homes, community care, spe-
cialist visits, family support organisations, medications and research and development
institutes [6], and indirect costs to society for taking care of patients, including costs
for family caretakers and unpaid research work. According to a study in Switzerland,
direct costs represent 55.7% of the total costs of dementia and indirect costs represent
44% [6]. Another study found similar proportions of indirect costs for mild (42%) and
severe (43%) dementia patients [7]. The indirect costs of supporting this community
must therefore not be ignored [6, 8].
The indirect costs of taking care of people with dementia can be categorised into
two types: financial costs and mental costs. The changes of behaviour on dementia
patients will request caregivers to spend more time and additional resources to prepare
the physical and mental challenges which are caused by the illness [9]. To give better
care to their life partner who had been diagnosed with dementia, family caretakers might
need to reduce their working hours or even resign from their regular jobs [8, 10–12].
The costs of informal family caregivers could be considered to equate to the salaries
they would otherwise earn in the job market or the societal costs of paying a nurse
or caretaker. The estimated amount of informal service offered weekly to a dementia
patient at home is around 50 h [6], and caretakers’ quality of life and social activities
might also be affected, rescheduled or reduced, depending on the level of dependency
of the patients. These changes can be very challenging and cause depression problems
in caretakers [13–16].
The enormous toll of dementia is not only financial, but also mental, both for those
with dementia and their caretakers. Previous studies have shown that commonly expe-
rienced symptoms in this community include communication [17–19], emotional [20],
behavioural [21–23], wandering [24–27] and comprehension [6, 17, 28–30] problems.
Current medical treatments for dementia patients can slow the progress of dementia and
improve mental health and behaviour, but pharmaceutical approaches are more focused
on reducing symptoms than improving their quality of life.
Even though the lifespan of people with dementia is idiosyncratic, the average lifes-
pan for people diagnosed with dementia is around 4 years—although some can live 20
Understanding the Difficulties of People 5
years or more after being diagnosed [31]. As there is no medical cure and some patients’
symptoms cannot be improved by pharmaceuticals [1], some patients and their caretak-
ers might live with the symptoms for many years. Therefore, besides the financial and
medical aspects, enhancing the quality of life of this group should be studied.
while interacting with patients it is better for conversation experience if the topics are
focused on their personal backgrounds and interests [1]. One of the three most important
elements for developing efficient interventions in behavioural therapy is to include users’
personal preferences [40]. The Health Foundation, an independent UK charity [51],
contends that person-centred care is more efficient and can enhance service quality in
patient treatment as it increases a patient’s willingness to participate in medical care,
which can reduce the use and costs of emergency hospital services [42].
Furthermore, “Tailored Activities Program” which considers patients’ backgrounds
and interests as one of its components, can improve dementia patients’ behaviours,
including ‘shadowing, agitation, argumentation, and repetitive questioning’ [43]. Thus,
integrating personalised information and interests into a treatment programme can
enhance its effectiveness [1, 40–42].
Some dementia symptoms can be improved if the topics of discussions are related to
personal preferences, as patients are more interested in speaking about topics related to
their own life stories or memories [44]. When patients are more interested in participating
in treatment, their self-confidence increases [44], improving their behaviour and health
outcomes [41]. Topics with personalised content and preferences, such as pictures, music
and videos, can stimulate the brain more than the same topics with more general content
[44]. Person-centred care services can thus offer a better quality of life to people with
dementia [30].
Studies have shown that improving the quality of caring services is important to study
both ‘care processes’ – which indicates the way a service is organised – and ‘staff
interactions with patients as well as their families, referring to human interactions [42].
Therefore, using interactive mobile applications in dementia patients’ psychosocial treat-
ments instead of only shifting its burden from caretakers to patients’ families and close
friends, technology can allow more people to participate into the programs/activities,
enhancing communication and connections between distant relatives and people with
dementia [46].
Another important aspect is to consider how people with dementia can benefit from
technology, as far as Serious Games are concerned. Instead of aiming for pure enter-
tainment, a Serious Game is for slowing down the progress of the illness on a patient
by maintaining their skills, abilities or/and behaviour by using this application. A study
showed that the top five aspects of applying a Serious Game in health care are “educa-
tion, exergaming, cognitive rehabilitation, psychology, and physical rehabilitation” [29].
Here, for this Serious Game authors are gamifying the personal memories of their par-
ticipating patients, in a manner respectful to them. While the outcome of this application
is targeted to be fun and catchy, it is aiming at becoming a research prototype to a ther-
apeutic e-Health application for further research. In this research, the patient’s personal
multimedia content - in form of image, video and audio files – will be gamified into this
application. Based on metadata analysis performed on the content level in application
logic, the game engine is generating a unique, custom puzzle for the patients to play,
containing their very own personalised memories.
Understanding the Difficulties of People 7
According to data reported by Statistics Finland, the proportion of people with dementia
in Finland was the highest in the European Union (EU) in 2016 [42]. In 2017, 20% of
stated causes of death for people over 65 in Finland were dementia and Alzheimer’s
disease [47], and, in 2018, 19% of deaths for people over 65 in Finland were caused
by dementia—more than 10,000 people—and 33% of people aged over 85 died due to
dementia and Alzheimer’s disease [48].
The total number of people who died from dementia and Alzheimer’s disease in
Finland in 2016 was 9,200, which rose to 10,120 in 2018 [49, 50]. Similarly, deaths
caused by dementia and Alzheimer’s disease increased 47.1% from 2008 to 2018 [51].
Therefore, the number of deaths from dementia and Alzheimer’s disease in Finland has
increased around 10% every two years and 50% over ten years. Moreover, dementia and
Alzheimer’s disease were the only causes of death that increased after 2008 [51].
The proportion of people aged 65 and over in the population is expected to rise
from 19.9% in 2015 to 26% by 2030 and 29% by 2060 [52]. The trend in all European
countries is for elderly people to want to be cared for at home [53], but resources and
funding will probably not increase sufficiently to satisfy the service needs of seniors
with dementia in Finland. The average total direct and indirect costs of caring for one
dementia patient was around e36,000 euro per year in 2008 in Northern Europe [54],
and, in the United States, the average total Medicare payment for a person with dementia
over five years was almost twice that of a heart disease or cancer patient [55]. Thus, new
or different methods or technologies that offer better and more cost effective services
for caring for this group may relieve part of the financial burden on the country.
3 Research Approach
This qualitative study used interviews to gather up-to-date information from current
staff who were working for the Alzheimer’s Association and the Alzheimer Society of
Finland, to understand the present situation of dementia patients and their caretakers.
Participants
The criteria for choosing participants are relevant to their answers, and the informants
in this research needed to have prior experience of caring for patients with dementia.
In this study, authors discovered the contacts of potential respondents online from web-
sites of two different memory illness supporting organisations in Finland: Alzheimer’s
Association and Alzheimer Society of Finland. Invitations were sent by email that asked
recipients to answer the questions independently online.
Questionnaire
Questions for the interview were designed based on Stone’s criteria: appropriate, intel-
ligible, unambiguous, unbiased, omnicompetent, piloted and ethical [56]. The lengths,
wordings, grammar and order of the questions were also important aspects of the design
of the questionnaire [59–61].
Since the aim of this study was to understand the difficulties of people with dementia
and their caretakers in Finland. Three main research questions were addressed: (1) What
activities were arranged by the memory illness supporting organisations in Finland (2)
What psychosocial challenges the people with dementia and their caretakers are fac-
ing? (3) Can activities reduce negative impacts by dementia symptoms in view of the
respondents?
Methods
As the purpose of this study was to collect up-to-date information about current methods
from professional caretakers, conducting a one-to-one interview was considered the most
suitable method. The invitations for the interviews were sent by email, but, at the time
of the study, a global pandemic was still ongoing, and no face-to-face interviews were
possible. The interviews were therefore conducted online between the 3rd and 17th of
April 2020, and analysis was conducted thereafter.
In consideration of cost and efficiency in creating the questionnaire and distributing
it to targeted interviewees, the authors chose a readily available survey engine offered
by Google. Results of the questionnaire were saved in Google’s online storage and only
authorised people were able to access and download the data.
After collection, the data was organised, summarised, categorised and reviewed.
This study follows Braun and Clarke’s [64] six-step framework for conducting thematic
analysis: familiarisation with the data collected from the interviews; generating initial
codes; categorising the data into potential themes; reviewing, defining and naming the
themes; reporting the findings; and analysing them based on the initial research questions.
The responses were transcribed and are summarised below.
4 Results
4.1 Profile of Participants
For this study, the authors sent invitations to around 70 contacts by email. In total, 16
participants completed the interview with full response data. All of the respondents
had been working within activity-organising networks for dementia patients, either at
the Alzheimer’s Association or the Alzheimer Society of Finland. Six participants had
worked with dementia patients for 20 or more years, two for 11–19 years and seven for
1–10 years. All of the participants had working experience with dementia patients, and
only one did not specify the length of that experience.
The respondents described their educational and occupational histories to support the
reliability and validity of their responses. To further assist the research, the interviewees
also shared links and references online and traditional publications with more infor-
mation on the topic of this research. Almost 70% (11 participants) of the respondents
were interested in the progress of the research and further cooperation or participation
in follow-up interviews and provided their email addresses for future correspondence.
4.2 Results
Out of 16 interviews with professionals of memory care, the following results were
recorded in tabular and textual formats for each of the questions presented subchapters.
Table 1. Psychosocial issues as faced by memory patients, their caretakers and family members
Table 1. (continued)
Furthermore, the same principle with the weighted significance and number of
occurrence is applied to all the resulting Tables 2, 3, 4, 5 and 6 in below.
Table 2. (continued)
Table 2. (continued)
Table 3. Activities enjoyed the most by memory patients as per the observations by specialists
Table 3. (continued)
Table 4. Activities most enjoyed by caretakers and family members of patients as per the
specialists
Table 5. Activities arranged for the memory patients by their supporting organisations