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2 ICT, mobile workers and the chronically ill

2 ICT, mobile workers and the chronically ill

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9 Participative Design for Home Care Nursing


9.3 User involvement in design

The development of usable systems (e.g. Kujala 2003, Karat 1997) is

achieved by involving the potential users early on in the design process.

The ISO 13407 standard concerning the design of interactive systems

(1999) stresses the importance of active involvement of users in order to

understand the user and the task requirements.

User involvement can take many forms, and ranges from incidental information gathering, to user consulting to participative cooperative design

procedures (Damodaran 1996). Kujala (2003) gives an overview of the

main different types of user involvement approaches, each originating

from its own tradition: user centered design, participatory design, ethnography and contextual design. Over the years, these approaches have grown

more closely together. For instance, contextual design involves ethnography, and participatory design also combines with the other approaches.

From a review of studies on user involvement, Kujala (2003) concludes

that user involvement usually has a positive effect on the quality of the designed system and that the benefits outweigh the costs of user involvement. However, Kujala also concludes that it is of vital importance that the

involvement of users is carefully managed in the process. There are various ways in which user involvement can play a role in the design process,

and some main design approaches in which user involvement takes place

will be presented in the next section. The design cycle approach (Roozenburg and Eekels 1995) form the basis of the other approaches presented

below. It involves a process with convergent and divergent stages. The cycle consists of the stages analysis – criteria – synthesis. The design evolves

via provisional design, via expected properties to simulation and then to

evaluation, on the criteria defined earlier, and finally reaches the stage of

decision making on the design. This design cycle approach forms the basis

for product design or service design, but it is merely focused on the product or service. It is a well established method and can be considered as a

basic unit that is repeated over and over again in more iterative design approaches

9.3.1 Design approaches

Evolutionary design approach

In Boehm’s spiral development approach (1988), stages of development,

i.e. requirements plan, risk analyses, prototypes, various types of requirements tests and validations, and plans, are successively developed as in a


Marion Wiethoff et al.

spiral progressing outwards. This approach has been successfully used in

many projects for software development (van de Kar 2004), and its method

forms the basis for a number of IS development approaches. The spiral design method is more explicit with regard to proposing methods for analysis

and evaluation

Participatory design approach

The participatory design approach (e.g. Ehn 1993) has become an important design approach in the past decades. According to this approach, the

user‘s work activities and the integrative context in which applications are

used is the starting point for the technological design process. The end users, i.e. those who will be interacting with the final application in order to

perform their duties, in their own experience and expertise, form the basis

for the criteria of success of the designed product. Therefore, all stakeholders affected by the newly organized and performed way of working

with the designed application will be involved in the whole design process.

Ehn’s participatory design method is very important for stressing the cooperation between designer and prospective user in a ‘democratic’ way:

the user participates actively, instead of being consulted from time to time.

Therefore the user’s participation is more active in comparison to the spiral

development method (Boehm 1988).

Contextual Design

The above mentioned approaches require the stakeholders to have a clear

view of the new system’s characteristics. However, this usually is very difficult to achieve for novel applications. Contextual Design (Holtzblatt and

Beyer 1993) is a design approach specifically developed for designing

novel products and maximising the innovativeness of totally new products.

The design method entails a structured approach for the collection of relevant user information and context information (“Contextual Inquiry”) and

for structuring and interpreting the information to make it usable for the

designers. To this aim, “models” are produced: context models, work

models, artefact models, physical models, flow models and sequence models which are used to regulate the communication between designers and

users/stakeholders and to prioritize the design decisions. Information is

collected using interviews, observations and discussions. This is a very

comprehensive approach to the full process of design, from first idea about

the technology to final design. This design approach has been applied successfully at the Digital Equipment Corporation (Holzblatt and Beyer

1996), and has served as the basis for the Early Scenario based evaluation

9 Participative Design for Home Care Nursing


approach (ESE, van den Anker 2003). The ESE was taken as the model for

the current study, because of its particular strength in very actively involving the end users and all the other stakeholders in the whole design cycle.

Furthermore, the ESE is explicit in involving all stakeholders in the later

stages in various types of evaluations, after implementation of an application.

The early scenario based evaluation approach

The ESE approach (van den Anker 2003) is oriented towards user-centered

design and based upon Holzblatt and Beyer’s Contextual Design approach,

and applying Ehn’s concept of very actively involving users as participants

in the design process. In spite of its name, the approach is basically a design method, because the method involves the whole process of designing

and evaluating a new technology application. The evaluation takes place in

various stages, even at the early stage of the conceptual development;

hence the name. Potential problems and opportunities in use and functionalities are identified at an early stage, so they can be accounted for in the

design process. Various categories of actors are involved: i.e. the designers, the prospective end users, the service providers, and possibly other organisations involved in providing services attached to the application. The

use of scenarios is elaborated.

The evaluation part of the approach is based on Andriessen’s (2002)

three–stage model for assessment of the usefulness and usability of new

technologies. The three stages refer to:

1. Defining the requirements by scenario-based concept evaluation. The

process methodology implies a contextual analysis of the new technology and of the current situation of the application to be. This is the basis

for developing a future work scenario. A future workshop for participatory evaluation of the scenario will then result in the identification of

user and context requirements.

2. Prototype testing based on a systematic user oriented evaluation of the

usability and usefulness of an application in a laboratory setting. This

stage results in the identification of renewed user and context requirements.

3. Operational evaluation, of socio-technical settings in which new applications are introduced.

In this chapter, we concentrate on the first stage only, i.e. defining the

requirements by evaluation of a scenario-based concept.


Marion Wiethoff et al.

Fig. 9.1. The “Early Scenario based Evaluation“ method for evaluation of novel

technology applications as it was applied in the current study. Only the stages B F are specified in this chapter

The context of use is considered extremely important in the phase, defining the scenario input. There are various ways to conceptualize the context of use. One method is to apply Activity Theory (Engeström 1987;

Kuutti 1995) to define the content. Activity Theory considers, in particular,

organisational issues and the social cultural environment to be very important. In the theory ‘activity’ is defined as the ‘minimal meaningful context

for understanding individual actions’. The activity entails: tool, subject,

object, rules, community and division of labour. The object is the entity (or

goal) that actors manipulate. The actors interact on the object with the help

of artefacts (tools), within a context of roles, and under a set of community

rules (Fig. 9.2). This definition of an ‘activity’ is used in the current project to define the elements that need to be incorporated in our scenarios

(see further). The activity is the minimum meaningful context for understanding individual actions (Kuuti 1993). For the sake of the present focus

on mobile work, the space- time setting is added to define the context of

mobile work, i.e. synchronous vs. asynchronous, same vs. different location, mediated by what type of tool, under which rules, and who participates.

9 Participative


Design for Home Care Nursi

u ng










Division of




Fig. 9.2. Activity structure

u for mobile work

k (adapted from Engeström 1987)

Considerations for choosing the design model

d for user participaIn the context of home care, the design model selected

tion was chosen on the basis of the following considerations:

• the user group

u was varied in age, experience with new technology and

limitations, i.e. both elderly chronically ill, elderly healthy, young

u or

middle aged carers and professionals

• the user groups had different types of roles, e.g. patients at home and


• some user groups had strong requirements originating from the organisation or professional practice. The applications should carefully fit in

the home context and the working context of the user groups

• most of these user groups had little acquaintance with new technology

applications, and this means, on the one hand, that they had therefore


more difficulty in imagining the effects of new technology applications,

and, on the other hand, that it was vital to design applications that follow closely the

t needs and requirements and limitations of these




• the specific user needs and requirements were relatively unkn

u own to the

designers, and also to the prospective users


Marion Wiethoff et al.

These considerations, and the following argument of Van de Kar (2004

p 48): “for design cases in which the requirements are not well formed, or

not well understood by the users, where it is difficult to specify the requirements or where it is difficult to predict whether a solution will perform in practice an evolutionary design approach is needed” were conclusive.

A comprehensive participative design approach was needed, in which

all relevant stakeholders participated in a carefully managed manner and in

which contextual information was extensively dealt with, and which would

also enable future evaluations of existing tools after implementation.

Therefore, the ESE method, with the activity theory incorporated was chosen.


In order to realize the stakeholders’ involvement effectively in the design

process, it was extremely important to be able to communicate effectively

with them to derive the appropriate results. According to Carroll (1995),

the use of scenarios can be very fruitful. There are many types of scenarios, e.g. textual, storyboards, moving videos, with and without interactivity, but a very important dimension (e.g. Van den Anker 2003) is scenario

richness. This entails that scenarios enable interactivity between the audience and the scenarios, e.g. as in an interactive demo, that there are various

discussions about the scenario, and that the scenarios have a narrative

character. In general, it has been found that narrative scenarios arouse imagery, interpretation, comprehension and recall (e.g. Sadoski 1999), and

therefore, rich narrative scenarios are expected to act most powerful in participative design processes. Furthermore, one can expect that a rich scenario will solicit comments at a detailed level.

Several types of scenarios were applied for the design process in the

present study. Because of the large variety of user groups, the choice was

made to organize focused discussions in working groups in parallel, to aim

at early conceptualizations. Furthermore, the decision was made to apply

various types of scenarios with increasing degrees of scenario richness,

and presented understandably for all stakeholders throughout the whole


The textual and pictorial scenarios are presented in this section. Activity

overviews (e.g. Fig. 9.3 and Fig. 9.4) were used to define the elements of

content in the scenarios. A choice was made to use a limited set of objects

for each scenario. A scenario should not contain more than one or two objects, otherwise the discussions on the scenario will be muddled and confused and the results chaotic.

9 Participative Design for Home Care Nursing


9.4 Application of the ESE design approach

9.4.1 Stage B: Analysis present situation and problems2



A literature study, interview study and participative observation is needed

to arrive at an overview of problem areas.

The actual analysis is performed

A literature study was performed for the current study of various overviews in books and articles (e.g. Steen 2000, Hoving 2003, Bosma et al.

2001, Van Kammen 2002, Koning et al. 2002) in the field of social medical literature concerning the organisation of care in the Netherlands, as

well as of overview articles on medical informatics, and of books and reports on pilot studies for Information and Communication Technology

(ICT)projects. Furthermore, a number of interviews were held in two

rounds: first, with key persons in the field of care in the Netherlands: scientists, management of national interest organisations, e.g. LOT3 and

NPCF4 and with organisations involved in implementation of ICT in health

care, e.g. KITTZ5 and NICTIZ6. In the second round, workers in the field,

were interviewed, i.e. GP’s, home care nurses, patients, voluntary carers

etc. The main subjects of the interviews were: (1) organisation and problems in home care: in the first round at a more generic, organisational

level, and in the second round at a more personal level, and (2) possible

options for ICT application development. In total, 14 interviews and a few

days and nights of participative observation were carried out.










The following main issues were reported:

• Evidently there will be a capacity problem for home care institutions

and frontline voluntary carers in the future. For these carers, the care

load can be up to 24 hours a day, for long periods in time, in cases the

spouse is the frontline voluntary carer. There are approximately half a

million frontline voluntary carers in the Netherlands: 10% below 35,


Only stages B, C, D, E and F are presented here.

LOT: National organisation coordinating Home Care institutions and representing them nationally.

4 National organisation for defending patients’ interests

5 Quality Institute for Innovation in Home Care

6 National ICT Institute in Health Care













Marion Wiethoff et al.

50% between 35 – 60 years of age, 40% over 60, 20% over 75 (figures

from the Dutch Coordination institute for Frontline Voluntary Carers). It

can be concluded that the high work load for front voluntary carers

make them a group with special interests, risks and needs.

Elderly chronically ill and frontline voluntary carers complain that they

have loss of control over their own lives. However, having more control

over one’s life means a higher task load, and this is a disadvantage for

many: but for everyone experiencing a loss of control, informational

control can be beneficial. Someone with informational control only,

feels that it is not possible to influence the occurrence of events, but

they know what is going to happen. People feel more in control if they

have informational control in comparison to no control at all. It is advisable to establish a fit between clients’ needs and the type of control provided.

Clients and family complained about the Personal Care Budget (PGB)7.

Apparently, managing their PGB carries a high decision load.

Home care institutions have their own needs. It was reported that they

feel a need to be able to acquire information at a distance that is relevant

for giving care to a client. This involved specific medical information,

but also information concerning the care given and the observations

made by GPs and professional carers. This is in line with the utilities reported by Vartiainen (chapter 2 in this volume) that in order to overcome temporal, spatial and organisational disablers, ICT could be used

as a collective memory to collect, store, access and utilize knowledge, as

well as for communication.

Clients and frontline voluntary carers tend to become very isolated, and

it was reported that there is a great demand for social contacts and social




Many of the younger chronically ill patients have discovered the internet

as a means for finding medical information, but there are not many older

patients for whom this is an option.




“Persoons Gebonden Budget”; This is a Dutch regulation according to which

chronically ill people can receive a budget to allocate to sources for care, according to their own choice. The “Persoons Volgend Budget” is an improvement in that it reduces administrative burdens.

9 Participative Design for Home Care Nursing


9.4.2 Stage C: Defining the input for textual scenarios


A few main functionalities for support by ICT must be defined from the

analysis, performed at the previous stage. Foci for functionalities are defined according to the following criteria: there must be an obvious need for

a functionality on a relatively large scale, the functionality must entail to

some degree ICT functions, there should be a link to other organisational

and ICT developments in the Netherlands, so as to join forces, however the

functionalities should not cover pre-existing developments.

Next, rich, narrative scenarios should be defined, and in the first stage

the scenarios must be used to attract general comments, while in subsequent stages the comments should become increasingly detailed. The aim

of the first set of scenarios is to define the degree of desirability of the

functionalities, and the conditions under which these functionalities are desirable, as well as an overall judgement on the realism of the concept.

Therefore, the scenario richness of the first set of scenarios is limited,

comments about the appearance of the applications are not appreciated,

and textual scenarios are to be preferred. The scenarios should be validated

by stakeholders. Organizing a workshop is a possibility.

The procedure as it was performed and the results

From the analysis of the present situation and problems, the following

main issues emerged as relevant types of support needs:

1. Communication opportunities with medical professionals, also visually

2. Social support for clients and frontline voluntary carers

3. Informational support for clients and their family on the PGB, and support for transactions and PGB management

It was decided by the authors that the following types of support were

also relevant, but for practical reasons less of a priority for the current


4. Support for planning and administration for the home care nurses

5. Support for monitoring bodily functions at home

6. Informational support for the clients and front voluntary carers on medical issues, and concerning giving care


Marion Wiethoff et al.

7. Therefore it was decided to continue with three types of scenarios:

1. Scenarios focusing on coordination between planning of visits by

the carer and client in order to provide informational control

2. Scenarios focusing on communication between clients with the carers

3. Scenarios focusing on management of the PGB and communication with all other parties, i.e. family, friends, service providers, etc

9.4.3 Stage D: Developing textual scenarios

The central problem in the scenario was centred around low efficiency for

the home care institution. The following considerations were leading:

• there is considerable loss of time due to the need for a carer to travel

from client to client. Is it really necessary for the carer to come? There

may be instances where it is not necessary, e.g. because the patient feels

well enough that day to do some tasks by her/himself, or because there

is someone else around

• the urgency is not always clear; should someone come immediately, and

who should come or is it possible to communicate between client and

carer at a distance?

Two textual scenarios were produced for each of the three above mentioned types, one scenario based on use of contemporary technology, and

one scenario based on future technology. Each scenario was written as a

brief story, a narrative scenario, in which the main user makes use of the

application. Central features of the interaction with the application were

stressed. The scenarios had a strong narrative character.

The scenarios focussing on communication with the carers are presented

as an example.

These considerations led to the development of two scenarios: the scenario based on contemporary technology; this was called: ‘TV Home care’

(Table 1) and the scenario based on future technology; this was called:

‘Care always close’ (Table 2). The characterizations of ‘TV Home care’

are shown in the activity overview in Fig. 9.3)

9 Participative Design for Home Care Nursing


Fig. 9.3. Activity overview: Textual scenario: ‘TV Home care’

In this scenario, the actors were primarily clients, patients and frontline

voluntary carers, and home nurses and the GPs. The system and tools were

the equipment and the application designed for informing and communicating. The client would use it at home, at a fixed location: the combination of a TV set and a settop box, this combination enables the TV set to be

used for the internet, but the client still sees and confidence of a normal

TV set. The carers and the GPs will use PCs and internet, also at fixed locations. The object of the activity was communication between the client

and carer or GP, in the form of information transmission, social support or

treatment support. The client was the actor that initiated communication.

The communication would be mainly asynchronous, and meeting dates

and moments of the conversations would be recorded. The community behind the actors were the people involved behind the actors, i.e. patient

community, family, and other carers. The rules referred to the regulations

for providing care, treatment information, rules and considerations on

when to visit the patient physically and privacy regulations. In the division

of work, communication would take place to a large extent between client

and carer, and more incidentally between GP and client, or GP and carer.

In this scenario, the clients were mainly at home, the carer could be at

work, either in the home care institution or in the clients’ home.

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