Next Steps for User Integration in ICT for Aging Well

Alina Huldtgren

, Holger Klapperich

and Cordula Endter

CoDe4Health, Media Department, University of Applied Sciences Düsseldorf, Germany

Faculty of Social Sciences, University of Applied Sciences Zittau/Görlitz, Germany

Keywords: User-Centered Design, Participatory Design, Ageing, AAL, Ehealth.

Abstract: In the last decade user-centered and participatory design have become central approaches for the design of

technology in the context of ageing well. They promise a better fit of system requirements to user needs and,

eventually, a higher user acceptance of the end-product. In Germany funding programs explicitly ask for the

integration of users and user studies in real life contexts. They also started to fund accompanying research on

how technical projects implement user-centered methods. Given our own experience and research on user-

centered design from both an inside perspective as designers and developers as well as an outside perspective

as ethnographic researchers, we examine the current practice of user integration critically in this paper and

provide a list of crucial aspects including reflexivity, reciprocity, and empowerment that should be the focus

of the research on user-centered approaches for ICT design in healthcare in the coming years.

1 INTRODUCTION

10 years ago the first author started doing research in

Information and Communication Technologies (ICT)

for ageing. Coming from a Scandinavian user-

centered design (UCD) background, coupled with a

strong personal motivation for creating a better, more

independent life for older adults through technology,

she was highly motivated to start on her first

European Ambient Assisted Living (AAL) project

using UCD. Later, she met the last author of this paper

trained in ethnography, who was interested in how

UCD unfolded in AAL projects. Now, 10 years later

it is time for a shared reflection and roadmap to

further research in this field.

10 years ago, we still observed a strong

technology push in the field of AAL and ICT for

ageing. It was postulated that technological advances

in the areas of ICT, robotics, sensors, AR, and VR

offered high potential to solve challenges related to

the ageing population, support people in living longer

at their own homes and mitigate the lack of

caregivers. A plethora of systems was developed, but

few were accepted by potential users. User-centered

approaches were around but not yet commonly

employed. This changed in the last decade. A stronger

https://orcid.org/0000-0002-0542-8626

https://orcid.org/0000-0002-0321-6187

positive attitude towards the early integration of users

in the design and development process arose and by

now funding programs often dictate the use of user-

centered, or participatory design (PD). Participation

of people from the target audience of the envisioned

system should increase the fit between system

requirements and user needs to ensure that the

outcome is useful and usable by these people.

Subsequently, user acceptance should be increased.

Participation of so-called users is currently happening

in diverse ways in ongoing research projects. They

are labelled UCD (Norman & Draper, 1986), co-

design or co-creation (Sanders & Stappers, 2008),

some following the original Scandinavian approach

to PD (Schuler & Namioka, 1993). Many approaches

are described in the literature as user-centred or

participatory. However, the definition of these terms

and the accompanying research activities are diverse

with various degrees of participation ranging from

selective moments of involvement, e.g. through

interviews during the requirements analyses, to co-

creative involvement throughout the projects, e.g.

through regular focus groups or user workshops,

iterative ideation sessions and prototype testing.

While it has been proven (see e.g. Bertelsmann

Stiftung, 2018) that a continuous user participation

can be beneficial to the acceptance of eHealth

Huldtgren, A., Klapperich, H. and Endter, C.

Next Steps for User Integration in ICT for Aging Well.

DOI: 10.5220/0011072700003188

In Proceedings of the 8th International Conference on Information and Communication Technologies for Ageing Well and e-Health (ICT4AWE 2022), pages 291-298

ISBN: 978-989-758-566-1; ISSN: 2184-4984

291

applications, a systematic analysis of the levels of

participation, their effects on the people involved and

their value towards the project outcomes is missing.

Compagna and Kohlbacher (2015) emphasize that

user integration functions mainly as a guarantee for

receiving project funding. In how far people are

successfully integrated is rarely evaluated or

discussed. Neither is there much discussion on what

successful integration means, how it could be

measured and for whom it is beneficial. However, as

we argue, it is especially important for the area of

health and wellbeing to analyze and reflect on the

forms and methods of user participation and their

added value, since the results have direct impact on

the health and life quality of the involved

stakeholders. While the scope of this paper is neither

a systematic analysis of methods nor success criteria

of user integration, we rather provide experiences

from our own research and pose several themes and

accompanying research questions that are meaningful

to consider in future research in the field of UCD of

ICT for ageing well.

2 METHODS OF USER

INTEGRATION

There is a range of methodologies and methods to

integrate people into technology development

processes. While we present UCD, PD and Co-

Design separately in the following, it must be pointed

out that research practice moves along a continuum

of participation reaching from a focus on user needs

being elicited to fully shared control of design

decisions being made. To understand the viewpoints

of the approaches and the tensions and overlaps

between them, a historic view of their origin would

be necessary, which is, however, outside the scope of

this paper. In projects, we often see combinations of

methods from these approaches and sometimes

projects label their approach with a specific approach

even though its original values are not embedded.

2.1 UCD

UCD is probably the most widely used umbrella term

when it comes to IT development that involves people

from the target audience, denoted as ‘users’, at certain

points in the design process (e.g. requirements

analysis or prototype testing). The term goes back to

Don Norman’s (1986) work in the 1980s – who

worked at the intersection of psychology and

computer science to develop design principles for

user interface design that adapts to the user’s

cognitive and physical abilities. Throughout the last

decade funding programs on assistive technologies

for seniors have set on UCD as the main approach to

enable user participation in the design and

development of ICT (Fischer et al. 2020; Merkel and

Kucharski 2019; Ogonowski et al. 2018). One of the

main objectives for using UCD in this context was to

overcome the lack of market success of early AAL

systems, which derived merely from a technology

push, and did not serve the needs of the envisioned

users (Fachinger 2018; Greenhalgh et al. 2016).

2.2 Participatory Design

Participatory Design (PD) is another approach that is

cited more often in the context of integrating seniors

into the design of AAL and eHealth systems. The

approach has its origin in the Scandinavian tradition

of Cooperative Design that aimed at empowering

later users and other stakeholders of ICT through

giving them more control and possibilities to

influence the design process (Kaptelinin und Bannon,

2012). PD dates back to the 1970s when the

digitalization of the workplace started. There was a

strong demand by labor unions of a broad, societal

participation of workers and emancipatory citizen

engagement. Bringing together workers and

managers in what was originally called cooperative

design to envision a digitalized workplace together

was unique. PD followed humanistic and democratic

values. Nowadays, PD is mainly seen as an approach

to involve future users in the design process of

technology (Bødker et al., 1988; Greenbaum und

Kyng, 1991; Muller und Kuhn, 1993; Schuler und

Namioka, 1993).

Mackay et al. (2000) point out that the current

practice of user participation in gerontechnology has

little in common with the humanistic, democratic and

utopian ideal of PD. Rather, users are considered as a

“good thing” (2000, 738) because their participation

would lead to an improvement of the technical

artefact (Endter, 2021).

2.3 Co-design & Co-creation

Co-creation involves diverse stakeholders in a

creative process leading to shared innovation. Co-

Design is a specific implementation of co-creation

focused on designing technology. As described by

Sanders and Stappers (2008) the difference to UCD

in its traditional form, is that PD or co-design do not

see the user only as a source of information, but as an

active designer. Co-Design can be seen as newer

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implementations of PD without the focus on

democratic and humanistic values, but with a stronger

focus on creative activities mediated by a range of

hands-on methods for designing prototypes. Ideally,

participants identify with the envisioned tool,

evaluate developments continuously, influence

design, decide on functionality or even develop parts

of the system themselves (Lieberman et al., 2006).

3 EXPERIENCES AND

CHALLENGES

As argued by critical gerontologists, UCD fails to

involve older people adequately (Lassen et al. 2015;

Merkel and Kucharski 2019; Peine and Neven 2019).

Main critique points include that participation is used

to legitimize technological development or to foster

market success through matching user requirements

and systems (Endter 2016; Neven 2010; Peine et al.

2014). In addition, socially deprived or educationally

disadvantaged older people are often left out of

participatory processes (Biniok et al. 2016),

(Künemund and Tanschus 2013; Compagna 2012).

When funding programs dictate the integration of

users, developers are faced with involving people that

they often know little of. Nevertheless, they must

choose the right methods to let them participate while

making sure that the project is not jeopardized. From

our own experience, we know that balancing project

objectives and the integration of people into the

process is not easy. Next, we will describe insightful

experiences from selected research projects as well as

overarching challenges before we discuss our

proposed theoretical themes for future research.

3.1 Care@Home Project

Care@Home (Fitrianie et al., 2013) was an EU AAL-

funded project that focused on the development of a

smart TV platform for seniors allowing them to

access services of daily living (from a doctor’s call to

grocery shopping to live stream church service). The

project based on assumptions that older adults 1) are

or may become less mobile and 2) are used to

operating TV sets. Thus, the envisioned TV service

platform seemed like an ideal technical solution to

allow seniors to age in their own homes. We engaged

in a UCD process. We involved seniors for the first

time when we had paper versions of the UI ready and,

later, when hi-fidelity prototypes required usability

testing. The first author of this paper led the tests in

both phases. Reflecting the first sessions, which were

carried out at the homes of the older people, who were

recruited through a partnering senior organization, we

realized that the test group was biased in terms of

technology affinity and competence. Several of them

had taken part in previous studies and had acquired

technologies like smartphones, tablets, and even

smart TVs. They were generally positive towards

technology. In addition, since the sessions were at

people’s own homes – a conscious choice to mitigate

barriers – we experienced that some test participants

were acting as hosts, being explicitly polite. In our

perception this, however, stopped people from giving

the critical feedback that would have been helpful at

the early project phase. Although we explicitly asked

for critique, the configuration of host-guest situation

hindered them. In addition, we had a young student

with us who had hand-drawn the interfaces – also a

conscious choice to avoid making it look like we had

programmed the UIs already. During an interview an

older participant asked whether the student had drawn

them herself, and then exclaimed how impressed she

was that the student drew so well. A nice compliment,

but when asked about feedback to different designs

she simply liked them all and called them “beautiful”.

While we could be happy as technology developers

that people like the UI design, another situation

during the prototype testing showed the pitfalls of

involving people to “confirm” the usability of the

design. This time the running system was set up in a

community center to avoid the host-guest situation

but to still allow for a familiar environment. A

usability test was set-up with several tasks test

participants had to execute by themselves, using the

prototype and concurrent think-aloud. This time we

made sure to recruit a mixed group of older adults

with various level of technology knowledge. We were

happy to see that even the 70+ woman in the

wheelchair – a seemingly perfect match to our target

group – could navigate the UI. Such a result would be

communicated in a paper as a success of the system

design, had it not been for the post-test interview

when we asked whether she would use the system.

She told us that she did not need such a system and

suggested that her 90+ mother could. She agreed that

she was immobile but doing everything through the

TV was clearly not what she intended to do. While

not being representative, this nevertheless shows that

even highly usable systems could be designed far

from the lived world of the target audience.

3.2 Nutzerwelten Project

Nutzerwelten (English: User Worlds) was a project at

University of Applied Sciences Düsseldorf that

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293

followed a participatory approach by engaging

stakeholders, i.e. care givers, people with dementia,

social workers, relatives, before having a clear idea of

what to develop (Huldtgren et al., 2017). The set goal

at the project start was to support people with

dementia to communicate with caregivers and

relatives mediated by digital media. We took our time

to get familiar with the target audience, their lived

world and communication patterns. In the project we

developed several technology probes based on our

gained insights, early field visits and conversations

with stakeholders. One such probe was a tangible

world map (Huldtgren, 2015) that was interactive and

showed the places where a person with dementia had

lived, as well as an audio line with recorded stories

from the person about the place. While we understood

the map as a means for a person with dementia to keep

memories while the disease progresses, but also to

give caregivers conversation triggers, in an interview

with the person the following situation unfolded.

“What are you going to do with the map? Will it

be in an exhibition?” Mrs. Smith asks. My colleague

is surprised and says that our intention was to

improve the map and maybe give it to her, but Mrs.

Smith likes her idea of making the map and her stories

publicly available. “It could be interesting to other

people to hear my stories,” she says. Later in the

conversation Mrs. Smith suggests that we could also

give the map to her GP, who seems to be dear to her,

after she passed away. “Then he can remember my

stories.” she says – her eyes filling with tears.”

Clearly, the map had a very different purpose for her

than what we understood. This shows that we need

the deeper engagement with the participants to fully

understand their needs and motivations to participa

beyond the goals of our projects.

3.3 MemoPlay Project

MemoPlay was a German state-funded technology

development project which ran from 2012 until 2014

to develop an interactive online platform with the

goal to enable older people suffering Mild Cognitive

Impairment (MCI) to train their cognitive abilities by

conducting the memory training. It was intended for

individual use at home without the need for assistance

from care givers or medical staff. In the UCD people

aged 60+ were involved as interview partners or test

users during the requirements analysis, the formative

and summative evaluation of the prototype.

The last author of this paper conducted

ethnographic fieldwork from March to November

2014 in this project. She accompanied project

members in their UCD process, conducted interviews

and participated as a participant observer in test

sessions with seniors in the laboratory and at their

homes. In the following we provide only a short

excerpt from a usability test session, for the detailed

account, see (Endter, 2020).

“[The researcher conducting the test] repeatedly

emphasises how important it is that older people are

involved in the development of technology that they

will later use, hence why it is so important that the

participants are here today and have agreed to

participate in the study. She also appeals to their

individual ambition and sense of responsibility when

she describes the user test. No questions are asked

during her presentation, everyone is listening

carefully. Some take notes, but most of them follow

[the researcher’s] explanations and wait and see how

things will unfold. In the further course of the test,

they also only react when asked, they keep quiet, they

complete the questionnaires without asking questions

and they agree to the tests [the researchers] are doing

with them, even if some mention later in a subordinate

clause that they felt uncomfortable in the test

situation they had to undergo during their visit. They

want to appear competent and informed and, as if

their participation would be put to the test, they want

to prove themselves as suitable candidates.” (ibid,

p.104)

In an analysis of the observed usability test we

found an asymmetrical relationship between the

researchers conducting the usability test and the older

test participants. The way the researchers conducted

the study guaranteed that the participants behaved

like test users, developed a high level of compliance

with the procedures and ensured that the evaluation

was carried out successfully. The hierarchy between

testers and participants ensured that the uncertainty

introduced by the participation of older people is

brought under control, thereby serving the goals of

the project rather than accounting for the motivations

and feelings of the older participants. This is in

contrast with recent approaches to genuine

participation, which includes that the participants are

involved “as themselves” instead of being forced into

a role (Østergaard et al., 2018).

3.4 General Challenges

The provided excerpts only reveal a glimpse of our

experiences. However, they point to some interesting

insights. Researchers configure people as users in the

UCD studies. People are invited into the process that

fit the age group, and ideally match the defined user

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characteristics. They are involved at certain points in

the process, typically as interview partners during

requirements analysis, or as test persons to evaluate

prototypes of various fidelities. Rarely are they asked

beforehand whether they intent to actually become

users of the system or about their motivations to take

place in the first place. Nevertheless, we still call it

‘user testing’ and talk about ‘users’ in publications.

Both the Care@Home and the Nutzerwelten example

showed that not all participants considered

themselves users. In fact, we often heard that people

enjoy “helping science” or “feeling needed” as

motivations for becoming participants. This points to

a consideration that participation can take other forms

than being users, e.g. taking part as design partners or

consultants (see 4.1.1).

An accompanying problem is that seniors or

people with dementia are often seen as a homogenous

group with certain skills, lifestyles or motivations. In

projects with people with dementia focus is often

symptom-based and little research tries to see the

people as full individuals (see Wallace et al., 2013 for

a notable exception). This may not always be possible

as it may counteract the project goals. To be honest,

allowing real needs, feelings and motivations to

surface may result in requirements that do not match

the original project idea anymore. However, in the

way funding is organized, the goals and envisioned

system must be started clearly in proposals. There is

little room for changing direction during the project.

Thus, as we saw in MemoPlay, user testing is mostly

configured in a way that people are involved to

confirm the system’s usefulness. Hierarchies between

researchers and participants ensure the compliance

and keep uncertainties under control.

Another important issue lies with recruiting.

There is a selection bias towards people who are

generally interested and active, higher educated with

good income and more technology savvy as we e.g.,

saw in the Care@Home project. While a more

heterogenous group should be involved it is

challenging to reach people who do not volunteer. In

addition, projects could benefit from an involvement

of a broader stakeholder range, not only direct users.

Limited resources make this difficult. Nevertheless, a

first step would be to make the biases more visible in

publications, reflect on the implications of excluding

groups (e.g. precarious elderlies, older migrants) and

think of ways to motivate people to volunteer.

4 THEMES FOR FUTURE

RESEARCH

4.1 Reflective Participation Practice

To address the critiques from gerontologists (Lassen

et al. 2015; Merkel and Kucharski 2019) and the

challenges identified above, researchers in the field of

ICT for ageing well need to engage in a more

reflective participation practice. By reflective

practice we refer to reflecting on (1) our own role as

‘researcher participants’ configuring the design and

development process, (2) the selection of ‘user

participants’, (3) their motivations and attitudes

towards the system, and (4) the effect of participation

on the project outcomes. In the following we will

discuss the aspect of configuring users in detail and

provide a novel view on participation as matters of

care (Puig de la Bellacasa, 2011).

4.1.1 Configuring Users and Participation

As the MemoPlay example showed, researchers

conducting user studies in UCD configure older

people as users. In a deeper analysis of the design case

Endter (2020) describes how the researchers

conducting the usability test employ powerful

practices to configure the older adults as users in four

ways, i.e., spatially, affectively, discursively, and

materially. The way the seating is arranged in the

room, the materials researchers give people and the

ways they present the participants’ involvement (e.g.,

in this case appealing to the people’s competence and

compliance) establishes a hierarchy and the presented

case left the participants in a rather passive position,

not acting ‘as themselves’ or ‘with themselves’,

which are preconditions to genuine participation (see

Østergaard, 2018

). In the Care@Home case, we saw

a different scenario unfolding when we interviewed

people in their own homes, an environment we had

little control over. As it happened, we suddenly found

ourselves in a host-guest relationship, in which

participants were maybe too polite to criticize our

designs.

15 years ago, Redström (2006) pointed out that

there is a predominant interest in fitting people to

technologies within the field of HCI – although at that

point the discipline had already moved away from the

notion of users as mere cognitive information

processors and acknowledged their richness in terms

of motivations, feelings, and culture. Indeed,

employing words like ‘users’, ‘user testing’

implicates that we do focus on how people can

become users of the things we present to them.

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Vines et al (2013) have taken up Redström’s

argument as a starting point and discussed several

important aspects around how we configure not only

users but participation. They consider a reflection on

the forms of participation, and initiators and

beneficiaries of the participation as well as sharing

control as central issues. Besides, they call for

reflection on how participation can unfold, e.g.,

people can and already do participate in ways that are

“witting, unwitting, spectator-like, as a reflexive

commentator or as creator” (p.433) and argue for

more transparency on these engagements, and on who

benefits from it. We believe this is especially true in

the case of ICT for ageing well, since we often design

for vulnerable people, and the benefits of including

these should be made clear. In addition, opening up

to moving beyond involving people as users only, but

also seeing them as commentators, or design partners

and letting them transition between roles throughout

the project will allow more genuine participation.

Furthermore, as Endter (2020) put it „user

participation is less a manifestation of the

participation process of older people than of the

powerful practices of establishing controllable users.

If UCD should lead to an involvement of older users,

it must become a matter of care for those responsible

for the user involvement.” (p. 109) What this means,

is explained in the following section.

4.1.2 Participation as a Matter of Care

As described, older people are integrated into the

design of assistive technologies in a process mostly

initiated and configured by researchers or developers.

The images taken for granted about old age as a time

of decline, loss and vulnerability and assistive

technologies as generally being helpful for people in

such a state, however, is problematic. To reflect and

consider alternative configurations of participation,

we propose, in accordance with (Endter, 2020), to

think of UCD as matters of care. The concept was

introduced by Puig de la Bellacasa (2011), who

expanded Latour’s conception of technology as

matters of concern by an affective dimension.

“Caring in this sense is understood […] as a reflexive

practice that asks how the project members involved

in the constitution of the technical artefact evaluate

their actions of user involvement and to what extent

they see themselves as responsible for the

involvement of older people as users in the design of

the technology.” (Endter, 2020, p.99) Part of this

reflexive practice is also questioning the general

notion of user participation as being a good thing. To

understand what can be considered as good care, we

turn to Tronto (1993). She conceptualized good care

as characterized by attentiveness, responsibility,

competence, and reciprocity. These aspects are

required and fulfilled by caregivers to recognize the

needs of others and to serve them, thereby building a

mutual relationship between caregivers and people

being cared for. Tronto’s criteria can function as a

“heuristic for examining the extent to which user-

centred design actually empowers users to participate

in the design process and fosters a fit between

technology and user needs” (Endter, 2020, p. 99).

4.2 Empowering People to Participate

Older people need to be empowered to participate to

create a mutual relationship between researcher and

participant. As we have seen UCD tends to involve

people at specific points in the process (e.g., to gather

requirements, user test). However, if we want to reach

a point where participants can benefit as well, and

control is truly shared between researchers and

participants, a move towards a long-term engagement

with citizens in the target group and employing more

democratic, participatory methods is needed. Early

PD (Greenbaum & Kyng, 1991) provided such

methods, as the focus was on democratic values and

destabilizing power structures in times when workers

and unions were faced with the introduction of new

technology in the workplace. “[PD] emphasized the

importance of providing these workers and union

officials the knowledge and skills about the potential

of computational systems so that their views would

be better articulated when bargaining with

management.” (Vines et al, 2013, p.430) Thus, the

focus of involving people should not be on how to get

the information developers require out of them to

design the system they have in mind, but to empower

people with an understanding of the technologies that

enables them to vocalize their concerns and needs as

well as actively take decisions in the development of

digital systems. We must be aware, that

empowerment entails that informed participants and

truly shared control may lead to a rejection of the

envisioned designs and to large changes or at least

uncertainties in the projects. Ideally, funding

programs allow researchers to react on this. One way

to deal with changing requirements is to employ an

action research approach, e.g. the community-based

participatory research approach by Kang et al. (2020).

In addition, approaches to participation, such as

Co-Design and Co-Creation (Sanders & Stappers,

2008) may focus less on the emancipatory values, but

nevertheless they provide many creative tools to

engage with people in user workshops. This is one

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step to provide people with boundary objects (i.e.,

objects that bridge between social worlds, in this case

between designers and citizens, e.g., a model of a

scenario) to understand the design space and

communicate. Nevertheless, we argue that there is a

need for developing participatory methods that focus

more on advanced user interface technologies such as

AR, VR, or mixed reality as well as AI-based

systems. Especially given the older target audiences,

who are commonly less in touch with such advanced

user interfaces, need to be given space to experience

and grasp the technologies – besides the specific

system that is being developed in a particular project.

4.3 Reciprocity

Reciprocity refers to the human activity of mutual

exchange. It was mentioned above as one of the four

requirements for good care, and it is also a core value

in PD (Bødker& Iversen, 2002). We pose that

empowerment of citizens to take part is a key

requirement for reciprocity. According to Dreessen et

al.’s (2020) reciprocity is a mutual exchange that can

either lead to a direct gain for the participants or can

be characterized by acts with the interest of the other

in mind regardless of direct gains. A reciprocal

relationship can be open, closed, or dynamic over

time. In their analysis of their own community-based

participatory projects they describe a lack of felt

reciprocity and provide four handles to foster

reciprocity, e.g., the designers’ competence of being

embedded in the community of the participants, or

their willingness to become engaged in the

community in the long run. As we see, supporting

reciprocity requires a deeper understanding of the

people we envision as users, which in turn needs

long-term engagement with these people in their own

settings. Open questions revolve around ‘How can

ICT researchers manage this involvement and the

resulting complexity?’ ‘How can projects be initiated

and closed within these mutual relationships of

researchers and citizens?’ In addition, the strategies

provided by Dreessen et al. focus merely on the

researchers. However, ‘What are the needs of

developers and the responsibilities of participants to

enable and foster mutual relationships?’ These are the

questions we would like to pose for future research

regarding reciprocity.

5 CONCLUSIONS

In this paper we have presented our reflection of user-

centered design in the AAL/eHealth setting. Starting

from our own experiences to insights from the

literature we have critically looked at challenges of

including people as future users and given central

research themes to be investigated in the future. First,

we advocate more reflection and transparency on our

own roles and practices on how we configure

participation, on how participation can unfold and on

who benefits, and second, we call for new methods to

give people, in particular older adults, an

understanding of new technologies, and third, we

provided a theoretical frame for understanding

participation as a matter of care, focusing among

other aspects on the competence of the participants

and reciprocity. We hope others find this work

inspirational for their research agendas.

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