Design for All – Users Pilot study and requirement specifications for an external memory aid

The study is one of three in the project, “Design for All — Users”, a collaborative project of the Swedish Handicap Institute and the Swedish Association of Persons with Neurological Disabilities Authors Rita Ehrenfors Rosa Gudjonsdottir

© Hjälpmedelsinstitutet (HI) / The Swedish Handicap Institute (SHI), 2007 Authors::Rita Ehrenfors, Rosa Gudjonsdottir Illustrations: Cecilia Mella Cover photography:Björn Lestell Information Officer:: Lisbeth Säther Project coordinator: Lis Klöve Translation: Charly Hultén ISBN 978-91-85435-47-0 URN:NBN:se:hi-2007-07360-pdf Order no: 07360-pdf This publication has only been published in an electronic format and can be downloaded in PDF format from SHI’s website, www.hi.se/publicerat. It can also be ordered from SHI in alternative formats.

Design for All – Users Pilot study and requirement specifications for an external memory aid

Authors Rita Ehrenfors Rosa Gudjonsdottir

The Swedish Handicap Institute

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SUMMARY The pilot study reported here is one of three parts of the project, “Design for All — Users”, a study undertaken under the auspices of the Swedish handicap Institute. The aim of the project is to help manufacturers design and produce items and appliances that meet the requirements of large groups of consumers so that as many people as possible can use them. To date the project has focused on compiling a list of the requirements people with reduced mobility, impaired vision, and hearing impairments have when it comes to product design. Requirements for people with cognitive disabilities is an area that is not easily specified; consequently, it is more difficult to operationalize in practical terms. The aim of the present study was to find ways to include people with cognitive disabilities and impaired memory in the product design process. A model for how individuals with and without such disabilities might participate was developed and then tested. How the external memory aid performed in the hands of users with and without cognitive and memory disabilities was recorded, as were the requirements a mobile phone with calendar function must fill in order to be an effective aid. A qualitative approach involving self-ratings, focus groups, and the fulfilment of self-defined goals during the trial period was used to register the participants’ experiences and satisfaction. Two focus group discussions were held before the trial period started, and a third immediately after. Three test panels having different degrees of cognitive disability were formed by means of purposive sampling. The three panels were designed to represent each of the three levels in a User Pyramid, where Level 1 (the base) comprised individuals with no cognitive disabilities who use external memory aids; Level 2, individuals suffering from whiplash syndrome; and Level 3, individuals who had suffered brain injury. The focus group discussions were taped and transcribed in extenso, and the transcriptions were supplemented with notes on body language, facial expressions and gestures. Thematic content analyses were then performed on the material. The results of these analyses formed the basis for the composition of personas and the specification of requirements. On the basis of the results of the pilot study a model was formulated for how individual users, with and without cognitive and memory disabilities, can be incorporated into the product design process. Three cate-

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gories of users of external memory aids emerged out of the study: those who preferred Filofaxes; those who readily adopted new technology; and those who combined several different systems. The three groups had different priorities concerning the design features of an external memory support. The three user groups in this study were consonant and reinforced each other’s requirements regarding the functional features a mobile phone with calendar should have. But, the consequences of the product’s not having such functions for members of the respective panels were quite different, depending on the degree of cognitive disability. The pilot study has used only three test panels, the members of which were drawn from two different diagnosis groups. Other diagnosis groups with cognitive disabilities may have other requirements, and the model should be tested on these groups, as well.

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FOREWORD The pilot project, “Design for All — Users” consists of three parts of different character, all with the purpose of enhancing our understanding of the concept, “Design for All”. The first part of the project inventoried current knowledge in the area and did the research needed to produce an exhibit of products “designed for all” and discussed the concept of Design for All in relation to different kinds of activities. Having defined and formulated requirements and shown good examples, the project proceeded in Part Two to test new methods in the product development phase with a view to ensuring the accessibility and utility of products to as many users as possible. When we use the term, “Design for All”, we generally mean “for as many as possible”. To include as many users as possible it is necessary to have a good grasp of different user groups’ needs and abilities and to express their various requirements in terms that can be translated into product specifications. In the present report we describe a procedure for bringing users having different degrees of cognitive disability into the design process. We have not been able to include all the requirements of many different groups — physically disabled and vision- and hearing-impaired, for example, were not represented. These groups, too, must be included in the process so that the specifications are complete according to the concept of “Design for All”. The purpose of the pilot study was to test different methods of specifying the requirements of a product — a mobile phone with calendar function, already on the market — should fulfil. Secondly, the study should show how the design process can take account of users’ needs from the start. Design, with its functionality and sensuous qualities, is an important part of our everyday lives. When the market fails some consumers, they have to live with some kind of improvised individual solution. Improvisations of this kind are often costly and seldom have the benefit of a professional designer’s eye and hand. The result is often practical, but lacking in esthetic appeal. Consumers and users want products to be reasonably priced, but at the same time attractive and appropriate. An ability to catch on early to, if not in fact foresee, people’s varying needs so as to be able promptly to

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supply appropriate products has become a matter of survival for manufacturers. With a view to stimulating demand and developing new and better consumer products the final part of the project “Design for All — Users” will produce a compendium showing the state of the art and arrange courses for consumers/users, students and manufacturers on “Design for All”, based on the results of the rest of the project. The project has been carried out with the help of a grant from the Swedish State Inheritance Fund. LisKløve Project Leader Swedish Handicap Institute

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CONTENTS 1 SUMMARY..........................................................................................................................4 2 FOREWORD.........................................................................................................................6 3 INTRODUCTION..................................................................................................................9 4 USER-CENTERED DESIGN..................................................................................................10 4.1 Design for All............................................................................................................11 5 COGNITION AND MEMORY..............................................................................................13 5.1 What is cognition•....................................................................................................13 5.2 WHAT IS MEMORY?•................................................................................................18 5.3 WHAT IS AN EXTERNAL MEMORY AID?•....................................................................20 5.4 WHAT AIDS ARE AVAILABLE FOR INDIVIDUALS •........................................................21 6 METHODS..........................................................................................................................22 6.1 DESIGN•...................................................................................................................22 6.2 THE TARGET GROUP..................................................................................................23 6.3 THE SAMPLE AND RECRUITMENT..............................................................................26 6.4 DATA COLLECTION....................................................................................................33 6.5 PROCEDURE..............................................................................................................36 6.6 ANALYSIS..................................................................................................................37 6.7 DISCUSSION OF THE METHODS.................................................................................38 7 MEMORY CAPACITY IN DAILY LIVING.............................................................................40 7.1 GROUP 1...................................................................................................................40 7.2 GROUP 2...................................................................................................................41 7.3 GROUP 3...................................................................................................................42 8 A MODEL...........................................................................................................................43 8.1 THE MODEL, STEP BY STEP........................................................................................45 9 THE NEEDS AND REQUIREMENTS OF THE TARGET GROUP............................................47 9.1 USERS’ PROBLEMS.....................................................................................................47 9.2 STRATEGIES...............................................................................................................49 9.3 PERSONAS................................................................................................................51 10 USERS’ REQUIREMENTS OF AN EXTERNAL MEMORY AID, OR WHAT A MEMORY AID SHOULD BE AND DO...............................................................57 10.1 GENERAL REQUIREMENTS RELATING TO LEARNING/MASTERY.................................57 10.2 REQUIREMENTS RELATING TO FUNCTIONALITY........................................................59 10.3 REQUIREMENTS OF THE HARDWARE.......................................................................61 11 CONCLUSIONS.................................................................................................................62 12 REFERENCES....................................................................................................................64

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INTRODUCTION The task given by the Handicap Institute was to develop a model for user participation in the design of consumer items and systems that can serve as external memory aids for everyone. The starting point was a mobile phone equipped with a calendar function that can be used/administered via a computer. The pilot study was conducted as part of the second of three years of the Handicap Institute’s project. The design of the pilot study was based on the “user pyramid” concept for Design for All and on the seven principles of Universal Design. The International Classification of Functioning, Disability and Health (ICF)1 and CEN/CENELEC Guide 62 served as a frame of reference throughout. PURPOSE The pilot study should explore ways by which individuals with cognitive disabilities can contribute to the design of new products that may be used as external memory aids. The findings of the study should be reported in the form of a documented working model that can serve as the basis for training materials on product development according to the principles of Design for All. The pilot study should document the perceptions and experience of external memory aids of individuals with cognitive and memory disabilities as well as their expectations and the demands they make of a mobile phone equipped with a calendar function for use as an external memory aid. The ultimate objective was to draft a model for user participation in the product design process. What memory-related problems do individuals with cognitive disabilities and impaired memory experience in their daily lives? To what extent have external memory aids satisfied the needs of individuals with cognitive disabilities in their everyday lives? In what situations do individuals with cognitive disabilities and impaired memory have a need for external memory aids? What requirements do individuals with cognitive disabilities make of external memory aids?

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WHO (2002). International Classification of Functioning, Disability and Health. www3.who.int/icf/ CEN/CENELEC Guide 6, Guidelines for Standards Developers to Address the Needs of Older Persons and Persons with Disabilities. Edition 1/January 2002

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THE PROJECT GROUP The project group comprised two licensed work therapists, one of whom is working toward a doctoral degree in brain injury rehabilitation at Neurotec, Division of Occupational Therapy at the Karolinska Institutet (KI) and has extensive experience of brain injury rehabilitation. The third person in the group is a social anthropologist who has extensive experience of user-centered design and is working toward a doctoral degree at the Department of Human-Computer Interaction at the Royal Institute of Technology in Stockholm (KTH/CSC).

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USER-CENTERED DESIGN Consumers have become increasingly quality-conscious and make greater demands regarding products’ functionality and user-interface. In recent years a growing number of manufacturers and branch organizations have recognized that a high degree of usability is the key to a product’s success on the market. ISO 9241-113 defines usability as “the extent to which a product can be used by specified users to achieve specified goals with effectiveness, efficiency and satisfaction in a specified context of use”. Thus, it is important that the product affords the right functions and that these functions are easy to use. Usability may therefore be defined as a well-balanced combination “utility to the user” and “user-friendliness”. A product is not considered useful just because it is easy to use; it must also have functions that correspond to the user’s needs and purposes for using the product. A prerequisite to developing highly useful products is product development with the user in focus. This means involving prospective users and other interested parties in the systems development and interface design processes at the earliest possible stage. This makes it possible to be aware of their requirements of the product and to continually design and evaluate prototypes with the users’ help. In this way the product is developed, refined and adapted to the users’ needs and abilities. “User-centered design” is a collective term for a set of methods, processes and knowledge about how products should be designed so as to be intuitive, easily learned, effective, functional and satisfying to use. 3

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International Organization for Standardization

Product development with the USer in focus also means a more efficient systems development process and ensures the success of the process. In order to achieve a high degree of usability it is essential to work with prototypes that are repeatedly tested and evaluated, and to undertake continuous user studies with typical users so as to become aware of the need for improvements and further development of the product. 4.1

DESIGN FOR ALL User-centered design applies the principles of Design for All and Universal Design to develop systems and products that can be used by everyone, regardless of their basic capabilities.4 The two terms mean the same thing, but Design for All is used more in Europe, and Universal Design more in the USA. One reason to develop products that everyone can use is to meet the needs of larger groups of consumers, which means that manufacturers have a larger market, while it also is more inclusive and facilitates inclusion. The accessibility and usability of the product should be affected as little as possible by disabilities on the part of the user. Many of the products and environments we come in contact with in everyday living are rather deficient in terms of their form and function. This is true of several kinds of products and services as well as packaging, directions and buildings. Individuals with one or another disability are greatly disadvantaged when products are badly designed due to low levels of awareness on the part of the manufacturer. To develop products that follow the principles of Design for Everyone calls for extensive involvement of prospective users in a program where the products are developed expressly to meet users’ needs and are continually tested during the developmental process so as to ensure that the product really does satisfy users’ needs and is easy to use. The Center for Universal Design at North Carolina State University has formulated seven “Principles of Universal Design”5,6. They are, as follows: Principle 1: Equitable use The design is useful and marketable to people with diverse abilities. The product provides the same means of use for all users, identical where possible, equivalent when not.

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Vanderheiden 2000 Copyright © 1997 NC State University, The Center for Universal Design. For the full text — principles, guidelines and examples — see Annex E.

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Principle 2: Flexibility in use The design accommodates a wide range of individual preferences and abilities. It allows choice in methods of use. A scissors that can be used by left- as well as right-handed people fulfils both principles 1 and 2. Principle 3: Simple and intuitive use Use of the design is easy to understand, regardless of the user’’s experience, knowledge, language skills, or current concentration level. Principle 4: Perceptible information The design communicates necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities. Individuals who are blind or severely vision-impaired may need specially adapted products. Principle 5: Tolerance for error The design minimizes hazards and the adverse consequences of accidental or unintended actions. It provides failsafe features. For example, the “Undo” function in computer software allows the user to correct mistakes without penalty. Principle 6: Low physical effort The design can be used efficiently and comfortably and with a minimum of physical effort. Principle 7: Size and space for approach and use Appropriate size and space is provided for approach, reach, manipulation, and use regardless of user’s body size, posture or mobility.

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5 5.1

COGNITION AND MEMORY

WHAT IS COGNITION What is necessary for us to be able to think, acquire and store knowledge, and be able to use it? In everyday language we often say “use your head” when we want people to ponder and reason something out, that is, to use their intellects. To do that requires using a combination of what we already have in our heads and perceptions of the situation at hand. Only then can we function effectively and find solutions to everyday problems or problems of a more unusual nature. The word “cognitive” itself means “having insight”, whereas the word “cognition” is a collective term for the various processes that take place in our brains when we receive, process and use information. Cognition includes functions we use to process information and knowledge. Orientation, perception, memory, logic, speed of processing, speech and attention are terms often mentioned in discussions of cognitive disabilities. It is difficult to imagine what it is like when one’s cognitive abilities are impaired. An analogy may clarify: If you travel around Japan on your own with no knowledge of Japanese, you aren’t able to ask your way, to read signs or respond to the comments and advice of the people around you. The situation can be both difficult and frustrating. You haven’t lost your ability to think, but you cannot find and take in any new information. Despite your not knowing the language, all your previous knowledge and your ability to find things out by other means are intact. A number of films have been made about people who have lost their memory. Regarding Henry (about the consequences bad memory can have in daily relationships) and Finding Nemo are two examples. In the latter, a feature-length cartoon film, the character Doris has lost her short-term memory, and we see how that condition affects her behavior and interaction with others. In reality, of course, it is far more complicated inasmuch as most cognitive functions are interdependent. There are many possible causes of cognitive disabilities. Congenital handicaps, acquired brain injury, autism, ADHD/Damp, dementia, whiplash injuries and a variety of psychiatric disorders can all affect one’s cognitive abilities. There is a broad spectrum of cognitive disabilities, and the individuals diagnosed with the various problems do not form

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any homogeneous group. The combination and degree of cognitive disability an individual suffers depends on the degree of injury or illness he or she has suffered, the causes of the injury/illness and the underlying damage to the brain tissue. Not all cognitive disabilities are related to brain injury, however. We know that pain, depression and exhaustion can also disturb one’s concentration, which in turn affects one’s cognitive performance7. In the new classification from the World Health Organization, International Classification of Functioning, Disability and Health (ICF) the functions that are classed as cognitive disabilities are treated in a section entitled “Mental functions”; each function constitutes a “domain” having its own definition. The word “cognition” is used in only one domain, “Higher-level cognitive functions” (b164). These are special mental functions involving the frontal lobe of the brain; they include complex goaldirected behaviors like decision-making, abstract thought, planning and execution of plans and mental flexibility. They are often referred to as “executive functions”. Functions such as abstraction, organization of ideas, time management, insight and judgment, concept formation, categorization and cognitive flexibility are each defined separately. But there are many other domains that affect the functions generally included in the term, “cognition”. We have chosen to describe the cognitive disabilities among the participants in the present study in terms of the ICF definitions. We have made use of six domains within the component, “Body Functions”, and three in the component “Activities and Participation”.

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Schamand et al. 1998.

Domain code

Domain

Contents

b110

Consciousness functions

General mental functions of the state of awareness and alertness, including the clarity and continuity of the wakeful state. Includes functions of the state, continuity and quality of consciousness

b114

Orientation functions

General mental functions of knowing and ascertaining one’s relation to self, to others, to time and to one’s surroundings. Includes functions of orientation to time, place and person.

b140

Attention functions

Specific mental functions of focusing on an external stimulus or internal experience for the required period of time. Includes functions of sustaining attention, shifting attention, dividing attention, sharing attention.

b144

Memory functions

Specific mental functions of registering and storing information and retrieving it as needed. Includes functions of short-term and long-term memory; retrieval of memory; remembering.

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Domain code

Domain

Contents

b164

Higher-level cognitive

Complex goal-directed be-haviors functions such as decision-making, abstract thinking, planning and carrying out plans, mental flexibility, and deciding which behaviors are appropriate under what circumstances; often called executive functions. Includes functions of abstraction and organization of ideas; time management, insight and judgment, problem-solving

b 163

Mental functions of language

Specific mental functions of recognizing and using signs, symbols and other components of a language. Includes functions of reception and decryption of spoken, written or other forms of language such as sign language; functions of expression of spoken, written or other forms of language, integrative language functions

Domain code

Domain

Contents

d155

Acquiring skills

Developing basic and complexcompetencies in integrated sets of actions or tasks so as to initiate and follow through with the acquisition of a skill, such as manipulating tools or playing games like chess. Includes acquiring basic and complex skills.

d163

Thinking

Formulating and manipulating ideas, concepts, and images, whether goaloriented or not, either alone or with others, such as creating fiction, proving a theorem, playing with ideas, brainstorming, meditating, pondering, speculating, or reflecting.

d175

Solving problems

Finding solutions to questions or situations by identifiying and analyzing issues, developing options and solutions, evaluating potential effects of solutions, and executing a chosen solution, such as in resolving a dispute between two people. Includes solving simple and complex problems.

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5.2

WHAT IS MEMORY? We often talk about forgetting things. But what do we mean, when we say so? Is it when we lose our train of thought and forget what we were going to say next? When we have left a package, sweater, umbrella or some such in a shop? Or we have forgotten something we did years ago? Or, when we forget what we were about to do? Some things we remember without even trying — they are just there. How many times have we not parked the car in the driveway and realized we have driven home from work without a thought about how we got from A to B? We were “on autopilot”, it was pure routine. And we all have experienced how we tend to be more “absent-minded” when we are stressed, have too many things on our mind and haven’t really been paying attention — but here, it is not really forgetting, but rather failing to take in and register our actions or impulses from our surroundings. Memory consists of the ability to retain information about ourselves and our surroundings. It is a matter of experience, the knowledge we have acquired, events that we have been involved in or witnessed. Memory also includes knowledge and behavior that we have learned on a subconscious level, e.g., motor skills like riding a bicycle, or memories of emotions we have experienced or sensory impressions. Recent models of memory systems recognize that the act of remembering involves a good part of the brain. Memory is based on a complex cognitive network of the executive and perceptual memory. Executive memory has to do with behavior, plans and activity, whereas perceptual memory has to do with our senses and sensory experience that produce factual memory and memories of past experiences.8 Memory is truly a complex faculty. The act of remembering has three components. The first consists of registering or encoding information that is to be stored away. This requires that we pay attention to what we are to remember and do not allow ourselves to be distracted by something in our surroundings or to think about something else. The second component is information storage — this is done in the brain. The third component, and the one we often refer to when we talk about forgetting, is retrieval of the information we stored away for future use. Our understanding of where in the brain the three processes take place has increased considerably in recent years, thanks to the use of new technology, such as cameras based on scanner technology, but it seems to be

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Fuster 2004.

more difficult to pin down the specific aspects of memory failure. Some maintain that the problems originate in the encoding process, others that it is mainly a matter of failed retrieval. Furthermore, it has proven difficult to distinguish between recognition and retrieval in ordinary memory tests. Recognition occurs when some clue has inadvertently been given. Another dimension of analysis relates to the kind of memory in question. Prospective memory has to do with what we plan to do; it is, in other words, future-oriented. The opposite is retrospective memory, having to do with the past. Memory of events we have experienced is referred to as episodic memory; semantic memory has to do with recall of facts. These two categories are both examples of explicit memory, i.e., conscious retrieval of past experience.9 The concept of working memory refers to the ability to keep a selection of relevant knowledge in focus for a limited period of time in order to perform a task or solve a problem.10 Earlier, the focus of research rested primarily on retrospective memory, i.e., the ability to remember facts and events encoded in the past.11 Prospective memory, defined as the ability to remember and carry out a planned activity12 , has been found to be very important, both to those who have suffered different kinds of brain injuries and to those with no injuries.13 Despite its importance in daily life, prospective memory has not been adequately explored. 14 Working memory has received increasing attention in recent years. 15 Conventional psychometric memory tests measure different aspects of individuals’ memory capacity with a focus on their ability to recognize or recall information that has been presented to them relatively recently in the form of word lists, geometric forms and numbers.16 It is clear that many of these tests measure the subject’s ability to consciously recall information, i.e., explicit memory. 17 Prospective memory is an indicator of problems with what we call ordinary “day-to-day memory”.18 Many researchers point out that problems relating to explicit memory, attention and executive functions are not a good indicator of individuals’ ability to remember what they have planned, or are expected, to do. Measures of prospective memory yield a better measure of individuals’ memory performance in everyday situations.19

Schacter 1998. Barkley 1998. 11 Roche et al. 2002. 12 Kinsella et al. 1996. 13 Mateer et al. 1987. 14 Roche et al. 2002. 15 Westerberg 2004. 16 Kinsella et al. 1996; Roche et al. 2002. 17 Mathias et al. 2005. 18 Kinsella et al. 1996; Mathias et al. 2005. 19 Roche et al. 2002. 9

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In the present study we chose to focus on individuals’ ability to remember everyday tasks and activities, i.e., day-to-day memory, rather than on their memory capacity per se. Consequently, our primary focus rests on prospective memory. That is to say, we have chosen a broader definition of memory than is represented in the domain, “Memory functions” (b144) in ICF. 5.3

WHAT IS AN EXTERNAL MEMORY AID? Memory is a vital function. The consequences of impaired memory are far-reaching and represent a major functional handicap in modern-day daily life. The ability to remember things is the key to functioning well in both working life and the private sphere. An increasingly fragmented lifestyle makes considerable demands on our memory and ability to plan. We have many more social contacts per week today than people had only fifty years ago. We divide up our time in a whole new manner today, and we have many more tasks to divide it up among. Given the demands this new kind of lifestyle makes on us, we need to find entirely new ways to store the information we need. Our own brains are not enough. We also experience a need of effective search strategies to find needed information quickly. The solutions to these needs can also help us to remember what we need to remember in daily life. As a consequence, a range of new products to help us remember have come on the market. These products make up the category, “external memory aids”. There are a good number of such products on the market today: calendars, ‘Post-Its’, shopping lists and ‘Filofaxes’. We use aids like these at work and in our leisure. In the course of this study the respondents produced a regular catalogue of items and strategies people use to help them remember: kitchen timers, notepads, notes on the refrigerator door, family members and much, much more. More and more people have begun to use mobile phones and palm computers, and technological advances have equipped these devices with a growing number of functions. Some mobile phones, for example, have a function called “Planner” or “Organizer”. Nearly all have a calendar and some form of reminder-signal or “alarm”. With some exceptions, mobile phones and palm computers can be connected and synchronized with a PC, whereby the user can make back-ups of current information. The question before us here is what features do these functions have to have in order to serve as external memory aids for both individuals who have

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and individuals who do not have cognitive disabilities. In the ICF schema, external memory aids are listed under “Products and Technology” in the component, “Environmental Factors”. The ICF categorizations take their starting point in the contexts in which the items or technologies are used — e.g., in daily living, for communication, for learning, in one’s occupation, for diversion, recreation, cultural activity or sports. We have chosen not to use the ICF categorization for external memory aids on levels 2-4. We should perhaps also mention that family members are listed in ICF among Environmental Factors in the domain, “Support and Relations”. 5.4

WHAT AIDS ARE AVAILABLE FOR INDIVIDUALS WITH IMPAIRED COGNITION AND MEMORY?

A variety of strategies are used for rehabilitating individuals with cognitive disabilities after acquired brain injury. 20 A distinction is made between training basic mental functions and finding alternative ways to perform tasks. Unfortunately, many individuals who have impairments of their explicit memory do not receive any memory training.21 The problems associated with transferring the results of training to everyday situations have also been discussed.22 Research has confirmed, however, that individuals who have suffered severe injury may require extra compensatory aids, such as a memory book.23 Use of an external memory aid is an example of finding alternative ways to perform a task. Memory books are an established and common strategy for compensating impaired memory.24 The literature contains many and various examples of how they may be used.25 Some studies have found that long periods of training are required before individuals accept memory books as a strategic memory aid.26 It has been shown that the appearance of the memory book is of decisive importance for individuals’ willingness to accept and use them.27 Still, specially produced loose-leaf notebooks and booklets, which clearly signal the user’s need of external aid, are often used instead of products that are available on the open market.28

Cicerone et al. 2004. Tate 1997; Donaghy & Williams 1998. 22 Majid et al. 2000; A Eriksson 2005. 23 NIH 1999, De Luca et al. 2000. 24 Dihle et al. 1991; Burke et al. 1994; Tate 1997. 25 Sohlberg & Mateer 1989; Krogstad et al. 1991; Fluharty & Priddy 1993; Burke et al. 1994; Donaghy & Williams 1998; Ehrenfors 2000. 26 Sohlberg & Mateer 1989; Tate 1997. 27 Fluharty & Priddy 1993; Burke et al. 1994. 28 Krogstad et al. 1991. 20 21

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There are a number of approaches to learning to use memory books.29 Paper-based memory aids require that the user enters information on the calendar, remembers to consult the calendar for the information, and then remembers to do the task or activity at the time indicated. 30 In recent years, electronic memory aids have increasingly come into focus. Pagers, various palm computers, portable computers and mobile phones have been used as external memory aids. One of the advantages of electronic devices is the possibility to make use of pre-programmed reminder signals. The studies reported to date have found that individuals with impaired cognition and memory have benefited from the various systems. Studies of the use of pagers have shown that they help to establish daily routines and compensate for loss of cognitive ability after acquired brain injury. 31 The cognitive and memory impacts of acquired brain injury vary widely in degree. Therefore, it should be possible to personalize the user-device interface and the number of available functions to suit the individual’s needs.32 The length of the training period required for the injured person to accept and effectively use an electronic memory aid depends on his or her previous experience of external memory aids and the design features of the device.33 It goes without saying that motivation is also a critical factor.

6 6.1

METHODS

DESIGN We have chosen a qualitative approach in this pilot study because we are interested in the how individuals with and without cognitive disabilities react to and use external memory aids and their comments about them. User-centered design is based on user participation in the design process. Several studies of memory aids for individuals with impaired memory as a result of brain injury note that the design of the aid is of importance to individuals’ acceptance of the aid. Other experience from work with cognitive disabilities shows that an important key to the success of rehabilitation efforts is that individuals themselves identify the problem or formulate the goal to be realized.34 Sohlberg & Mateer 1989; Burke et al. 1994; Tate 1997; Donaghy & Williams 1998. Wright 2001. 31 Wilson 1997, 2001. 32 Wright 2001. 33 Wright 2001; Kim et al. 2000. 34 Burke 1994, Tham et al. 2000. 29

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With these findings in mind, we have chosen a user-centered method. Disabilities vary, and one of the aims of our project is to find out if it is possible to develop a design that allows as many people as possible to use the product. Therefore we have chosen several different activities in order to cover as many aspects as possible. There are many and various needs on the three levels of the User Pyramid. We sought to find out whether experience of an external memory aid, and the demands made of it, were the same or different between individuals on the different levels of the pyramid. We asked the participants to fill out three different rating instruments, participate in focus group discussions on three occasions, set individual goals for themselves regarding the use of an external memory aid and, finally, use a mobile phone equipped with a calendar function over a twomonth trial period. The focus groups were carried out using a so-called ‘multiple category design’, where all three groups met on three different occasions.35 Two of the instruments had been translated from English into Swedish by the project group. The accuracy of the translation was verified by having a professional translator translate the Swedish versions back into English. 6.2

THE TARGET GROUP In the present study we used three groups who made use of external memory aids. All were to have had experience of using mobile phones and computers. The population consisted exclusively of individuals of working age (18-65 years). The study included both individuals with cognitive disabilities and individuals with no such disabilities. The three groups were recruited so as to correspond to the three levels in the User Pyramid, a diagram the Handicap Institute has developed to indicate the share of individuals in user populations who can make use of a given product. The subjects on Level 1 were healthy individuals with no cognitive disabilities. We chose to include two categories of individuals — individuals with whiplash syndrome, and individuals with acquired brain injuries, respectively — to represent two levels of cognitive disability. The two groups are similar in that they have contracted the disability suddenly and that the disabilities are not progressive, but there are differences, as well.

35

Kreuger et al. 2000.

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THE USER PYRAMID

Level 1 Normal function, no disability

Level 2 Disability due to illness, uses compensatory aid(s)

Level 3 Severe disability, requires assistance in daily living

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6.2.1

COGNITIVE FUNCTIONS IN THE THREE The first group, who have no diagnosed cognitive disabilities, represent the vast majorities of consumers and potential users of the product. The members of the group rely on external memory aids in their daily lives. Many people today live hectic lives and are constantly on the move. Our aim was to recruit participants who are highly active both at work and in their leisure. When we have many simultaneous activities, we cannot always concentrate our attention; we tend to miss some impulses. It is not that we forget, but rather that we have failed to register and encode the information. People who suffer from whiplash syndrome may report cognitive difficulties, even though neuropsychological tests do not confirm a cognitive disability. The usual scanning techniques, DT and MRI, often fail to find objective evidence of brain injury. A review and analysis of the findings of 22 studies of cognitive disabilities after whiplash injuries found that individuals suffering from whiplash syndrome have significant disabilities, compared to healthy control groups.36 The difficulties experienced are in the areas of working memory, concentration, immediate and delayed retrieval, visual-motor tracking, and cognitive flexibility. The causes of the problems have not been pinpointed. In discussions of them the individuals mention pain, chronic fatigue, depression and post-traumatic stress. There is even speculation as to whether simulation may be the explanation in some cases, where the issue of economic compensation for the injury has not been resolved.37 Be that as it may, the research shows considerable evidence of undercapacity in terms of cognitive ability after whiplash injuries.38 Cognitive abilities do improve over time, but some degree of cognitive disability can persist. No two individuals who have suffered acquired brain injury are alike. For one thing, the injury mechanisms, and thus the localization and extent of injury, vary. Secondly, injury can have widely differing consequences for different individuals. Individuals who suffer acquired brain injury often have multiple functional injuries, and the consequences can be a complex of disabilities.39 The difficulties may be grouped in the categories of medical problems, physical disabilities, mental and perceptual problems, communicative disabilities, cognitive disabilities and behavioral disorders. The consequences of cognitive disabilities for the individual can vary widely between individuals, but also for the same individual over time. A person’s interaction with his or her surroundings is very important 36 37 38 39

Kessels et al. 2000. Schamand 1998. Kessels et al. 2000. Rice-Oxley et al. 1999.

25

with regard to how well the individual can handle practical situations from one instance to the next. Memory, concentration and attention are often impaired over long periods of time after an acquired brain injury. Speech handicaps and impaired vision are common, but, unfortunately, they are not always taken account of. Traumatic brain injury often results in impaired ability to solve problems, impaired capacity for abstract thinking, poor insight and judgment, and an impaired ability to plan and to process and organize information.40 Combinations of disabilities can result in myriad practical problems in everyday living. Consequently, people with acquired brain injury are generally described as a heterogeneous group with widely varying cognitive profiles.41 Individuals with acquired brain injury improve over time, although there is some discussion about how long improvements take and the factors that affect the outcome.42 Some individuals do not make progress, however. 43 Two-thirds of those who acquire traumatic brain injury are men. 6.3

THE SAMPLE AND RECRUITMENT Since we chose to use focus groups as our principal mode of data collection, we have used purposive sampling to recruit participants to our groups. We have tried to ensure that the members of the respective groups feel comfortable talking to each other about their handicaps. Toward that end we have selected participants who can perceive similarities between themselves and the others so that they sense a basic understanding in the group. We have also tried to ensure that no participant is acquainted with either other group members or members of the project team in order to start out with a “level playing field” in the discussions. Our ambition was for the groups to contain equal numbers of men and women, and we sought a good variety of ages, education, occupations and lifestyles. All the participants should be users of some form of external memory aid and have experience of using a a mobile phone and PC. We hoped that this common experience would facilitate the discussions, Interest in technology and technical aids per se was not a selection criterion. We tried to include people with different attitudes toward external memory aids. It was our hope that by using three different focus groups whose participants had different life situations and different levels of cognitive performance we would register more and varied perspectives on the requirements an external memory aid should fill. NIH 1999. Salmond et al. 2005. 42 Salmond et al. 2005. 43 Hammond et al. 2004; A Jonsson et al. 2004. 40

26

41

Incidence of cognitive disability 6

4 Group 1

3

Group 2 Group 3

2 1

To cope with stress

To solve problems

To think

To acquire skills

Mental functions of language

Higher-level cognitive functions

Memory functions

Attention functions

Orientation functions

0

Consciousness functions

Number of persons

5

The first group consisted of healthy individuals with no cognitive impairments. They were recruited via a network that originated in a workplace where one of the project team had once worked. Our invitation was sent out ‘on the grapevine’, starting with the project member’s previous work mates and moving on to include people who had no relationship with anyone in the project group. We continued spreading the word until we had six individuals who agreed to participate in the pilot study. These were asked to fill out a contact form, and an appointment was set up with each for a meeting with someone on the project team. At these meetings, the participants filled out another form with their personal details and were asked to rate the degree of their functional disabilities, if any, on a checklist drawn up on the basis of ICF and three other evaluative instruments. The other two groups consisted of individuals who had cognitive disabilities as a result of an injury. Both these groups were recruited with the

27

help of rehabilitation teams associated with a clinic in Stockholm, after approval of the project by an ethical review board. One member in each of the rehabilitation teams agreed to comb through current and past registers of patients to find individuals who satisfied our selection criteria and to contact them by letter. Those who agreed (in writing) to participate in the pilot study were asked to fill out forms with their contact details and personal data, plus information on their marital status, formal education, occupation and employment. They were also asked to allow members of the rehabilitation team to estimate the degree of their disability in the above-mentioned ICF domains and to note their diagnosis. When this data had been submitted, the project team invited all the participants to an initial meeting, where the participants were given the opportunity to rate themselves in three respects: social integration, cognitive errors, and prospective memory. We anticipated some drop-outs inasmuch as our study would cover a relatively long period of time and many activities. Furthermore, we were not absolutely sure that the individuals recruited by the rehabilitation team actually met our selection criteria. Consequently, we tried to recruit more participants to each group than we actually planned to use in the part of our study involving mobile phones. Ultimately, seven men and six women participated in the focus groups. Only seven of the thirteen participated in all three focus group sessions. Of the participants in Group 1 only one person reported any cognitive disability, namely difficulties coping with stress and other psychological demands. In Group 2, the rehabilitation team noted disabilities in five domains: most members of the group had impaired concentration, memory and higher-level cognitive functions. All had disabilities with respect to coping with stress and other psychological demands. In Group 3, disabilities in all nine domains were represented. The degrees of disability also differed from those in Group 2, being significantly more severe in several instances. 6.3.1

28

GROUP 1 Six people between the ages of 28 and 56 were recruited to Group 1. Two of these dropped out after the ratings, while four chose to continue and participate in the study. Of the two who quit, one was a student, and one a salaried employee. All four of the participants, two men and two women between the ages

of 33 and 56, were self-employed, but in different branches. Their working hours varied between 30 and 70 per week. Two were married, one cohabited, and one was divorced. Three had children under the age of 17 in the household. All had some post-secondary education. All were experienced users of computers and mobile phones. The rating of functional disabilities according to the ICF classification was performed by the doctoral candidate in the team together with the participants at the end of the initial meeting, when they filled out the various rating instruments. None of the subjects in Group 1 had functional disabilities in the domains that relate to cognition. One reported a slight impairment of vision; another had a slight impairment regarding coping with stress and other psychological demands; and a third had a slight hearing impairment. None reported having any cognitive disability or medical diagnosis. When it comes to responsibility for shopping, cooking, housekeeping, household bookkeeping, child care and planning social activities with family and friends, all but one shared the responsibility. The exception was a single parent, who bore sole responsibility for these tasks. One of the group, who does not have anyone under 17 in the household, does not do any shopping or housekeeping. Nearly all do their own bookkeeping. All have a close friend whom they can rely on. Most in the group shop many times each month, and they engage in recreation and visit family and friends several times a month. WHAT RESPONSIBILITIES DO GROUP 1 HAVE? 4 Sole responsibility Share responsibility

2

No personal responsibility 1

Bookkeeping

Planning social activities

Child care

Housekeeping

Cooking

0

Shopping

Number of persons

3

29

6.3.2

GROUP 2 Seven people, two men and five women between the ages of 20 and 42, all sufferers of chronic pain, were recruited through the auspices of a rehabilitation clinic. One of the seven did not come to the appointed meeting (and rating), and two dropped out after the ratings. Of the drop-outs one was a student who worked part-time; one was employed (the employer receiving subsidies offered those who hire people with medical disabilities), and one was unemployed. Of the four who continued, two men and two women aged 35-42 years, two were currently in occupational rehabilitation, one was self-employed, and one a student. Working hours ranged between 0 and 40 hours a week. Two were married, one cohabited, and one was separated. Three of the four had children under 17 in the household. One had post-secondary education; two had earned secondary school diplomas, and the fourth had completed elementary school. All were experienced users of mobile phones and PCs. All had been diagnosed as suffering from whiplash syndrome and generalized pain. The interval since the subjects’ injury ranged between six years and less than one year. Members of the rehabilitation team rated the degree of disability of all seven recruits. The disabilities concerned attention, memory functions and higher-level cognitive functions. All had disabilities regarding coping with stress and other psychological demands. The subjects rated their own abilities/disabilities with respect to vision, hearing and physical mobility. All rated themselves as having slightly or moderately impaired physical mobility. No one reported vision or hearing impairments. In this group two members were solely responsible for household tasks, and two shared the responsibility. Only exceptionally does someone else take responsibility. Three of the four have a friend to whom they can turn when they need support. Groups 1 and 2 take responsibility for their own chores to the same extent. The members of Group 2 shop, engage in recreation and visit with family and friends several times a month, albeit somewhat less often than those in Group 1.

6.3.3

GROUP 3 Group 3 consisted of eight individuals — seven men and one woman, aged 25-52 — who had acquired brain injuries. All but one were recrui-

30

WHAT RESPONSIBILITIES DO GROUP 2 HAVE? 4 Sole responsibility Share responsibility

2

No personal responsibility 1

Bookkeeping

Planning social activities

Child care

Housekeeping

Cooking

0

Shopping

Number of persons

3

ted through a rehabilitation clinic. The exception was suggested by a colleague, who was acquainted with the individual and knew that s/he had suffered a brain injury and relied on an external memory aid. All had undergone rehabilitation. Of the eight, two dropped out during the ratings and one shortly thereafter. The first two who chose not to participate were still in rehabilitation, one in hospital and the other in ambulatory care. The third person who dropped out were enrolled in ‘daily activities’ as provided for in the Act on Services and Support for Persons with Certain Functional Impairments (LSS). Five people — four men and one woman, aged 25-47 — continued. Two of these were in training to re-enter working life, one had no occupation or other day-to-day activity, one managed the household and took care of the children, and the fifth had started rehabilitation in an day clinic. Gainful employment in the group varied between 0 and 20 hours a week. Two of the group were single, two were married, and one cohabited. One had children under the age of 17 in the home. Three had completed secondary school, one was college-educated, and one had completed primary school. All had an acquired brain injury: two as the result of trauma, one due to oxygen deprivation, and two due to stroke. The intervals that had elapsed since the injury ranged from four years to less than one year.

31

Members of the rehabilitation team rated all the participants’ disabilities according to the ICF classification. Group 3 included disabilities in all the domains that we had selected to describe functional difficulties, but no domain was represented in all the participants. The subjects differed in terms of both their domain-profiles and the degree of disability, which confirms that people with acquired brain injury are indeed a heterogeneous group. The subjects self-rated their vision (b210), hearing (b239) and mobility (d4). One had impaired vision; no one reported hearing impairments; all reported some degree of disability with respect to mobility. One was totally paralyzed, whereas all the others had the use of their arms and hands, albeit with some degree of functional impairment. Nearly all members of this group shared responsibility for daily chores, etc., with another person. It is uncommon that they bear sole responsibility. Three of the five let someone else do their household bookkeeping, Four of the five have a close friend whom they can rely on. Some individuals in Group 3 never shop or visit friends and family outside the home; but there are also individuals who shop, make visits and take part in various recreational activities more than five times a month. The range of diversity is broader in this group than the others when it comes to activity outside the home. Two in the group have a personal assistant. Only one has a child under 17 to care for. WHAT RESPONSIBILITIES DO GROUP 3 HAVE?

4 Sole responsibility

Number of persons

3

Share responsibility

2

No personal responsibility 1

Bookkeeping

Planning social activities

Child care

Housekeeping

Cooking

32

Shopping

0

6.4

DATA COLLECTION We chose to use several different means to collect our data. Because our model is based on user participation, we focused on techniques based on users’ perceptions of their handicaps, strategies and needs. The participants filled out one questionnaire and two evaluative scales, took part in focus group discussions on three occasions, formulated personal goals regarding their use of an external memory aid, and finally, used a mobile phone equipped with a calendar function for two months.

6.4.1

EVALUATIVE INSTRUMENTS

6.4.1.1

Community Integration Questionnaire (CIQ)44 This instrument measures the degree of responsibility the individual bears in his or her daily life. The questions as who does the housekeeping, shopping, child care, household bookkeeping and planning social activities with family and friends. It includes questions that measure the respondent’s social activity and mobility outside the home. Finally, there are questions relating to working life. The questionnaire was developed to establish the individual’s degree of functional disability (according to the WHO definition) in six dimensions: orientation, physical autonomy, mobility, occupation, social integration and economic autonomy.45 The instrument has been used in groups with acquired brain injury as well as in healthy control groups.

6.4.1.2

Cognitive Failures Questionnaire (CFQ)46 This instrument measures the kinds of errors anyone can and does occasionally make: failure to notice things in one’s surroundings, forgetting things, absent-mindedness and losing control of one’s temper. The responses are recorded in terms of a five-point scale of frequency, ranging from “Never” to “Very often”. Respondents are asked to respond to 25 questions. The instrument has been used for individuals with acquired brain injury, whiplash-injuries and healthy control groups.47 The instrument was developed to measure failures of memory, perception and psycho-motor skills.48 Subsequent research has found that more factors are actually involved.49

6.4.1.3

Comprehensive Assessment of Prospective Memory (CAPM)50 This instrument, in the form of a five-point scale, consists of three parts. 44 45 46 47 48 49 50

See Annex A. Willer et al 1993. See Annex B. ref Broadbent et al. 1982. Wallence et al. 2002. See Annex C.

33

The first two parts concern how often we forget things we have planned to do, and how serious a problem forgetting these things poses in our day-today lives (39 items). The third part (15 items) focuses on the strategies we use to help us remember to do things. In short, the instrument measures our prospective memory. The scale was developed for use in groups of different ages, but it has come to be used among individuals with traumatic brain injury and healthy control groups.51 It contains strategies for remembering details relating to personal hygiene, clothing, meals, etc., and household and other day-to-day chores. In the present study we used a revised version of CAPM, with the permission of the Australian team who developed the instrument. 6.4.2

FOCUS GROUPS The first mention of the group interview in the literature dates from the 1920s.52 Group interviews have been used for many different purposes in social research. Merton was one of the researchers who, in the interwar period, worked to develop the group interview, and it was he who coined the term, “focus group”. His book, The Focused Interview, discusses issues that arose in connection with use of the groups.53 Focus groups have been widely used in the field of market research, but it was not until the 1980s that interest in the technique spread to other areas of inquiry. The basic idea is that the dynamics of group interaction can help people discover and clarify their perceptions and evaluations better than they can in individual interviews.54 Focus groups also make it possible to register more dimensions of the communication — humor, anecdotes and reasoning — than is possible in “face-to-face” interviews. Another oftenmentioned advantage is that the method does not discriminate against people who cannot or do not read and write, and it encourages comments from people who may feel that they “don’t have anything to say”.55 Focus groups have long been used in user-centered design, where they have proven a useful method to identify and gain a better understanding of people’s needs and intentions as well as their views on technology and its uses. Focus groups are generally used early in the design process in order to identify the target group’s requirements, which are then translated into design specifications for the product in question.56 In the present study, focus groups were used in a multiple category design.57 Three separate groups each met on three occasions. 51 52 53

34

54 55 56 57

Roche et al. 2002. Bogurdus 1926. Merton et al. 1956. Kitzinger 1995; Morgan et al. 1998; Kreuger et al. 2000. Kitzinger 1995. Bruseberg & McDonagh-Philp 2002. Kreuger et al. 2000.

6.4.3

GOAL ATTAINMENT SCALING (GAS) This instrument measures the degree of achievement of the individual’s self-set goals, i.e., any differences between anticipated and actual results.58 In the present study, the goals concerned three main activities: using the mobile phone’s functions, remembering important things, and performing a new task or taking on a new responsibility.59 The goals were formulated by each subject for him-/herself; thereafter, a continuum of possible outcomes was set up. The GAS scale has five values: from the least degree of realization (-2) to less than anticipated (-1), the anticipated outcome (0), better than anticipated (+1) and the best conceivable outcome (+2). GAS is useful in evaluating interventions and supportive technology.60 The scale is particularly appropriate in this study as it takes its starting point in the subject’s level of proficiency and his/her personally identified goals. GAS was developed in the 1960s to measure the results of psychiatric care. 61 The scale has subsequently been used with many different diagnosis groups, including individuals with acquired brain injuries, children with learning disabilities, and patients suffering chronic pain.62

6.4.4

THE TRIAL PERIOD The pilot study included a two-month period in which the participants used a mobile phone-based external memory aid. The reason for a long trial period was to give all an opportunity to use a mobile phone as an external memory aid. Hands-on experience of using the phone would also help them formulate their requirements, inasmuch as they would have experienced any possible shortcomings. A long trial period would also accommodate any differences in the time it took the respective groups to master the mobile phone’s functions, since individuals with acquired brain injury can need more time to learn.63 There are several examples in the literature of studies that make use of pre-defined trial periods to evaluate the functionality of electronic external memory aids.64 The project group defined a number of functions that the mobile phone must have. The Handicap Institute and a collaborative partner selected a phone that met the specified requirements: it should be a phone equipped with an address book, calendar and reminder alarm. The model must also be able to be synchronized with a computer. Sony Ericson’s Z1010

Wessels et al. 2004. See Annex D. 60 Wessels et al. 2004. 61 Kiresuk et al. 1968. 62 Cox et al. 2002. 63 Sohlberg & Mateer 1989; Tate 1997. 64 Wilson et al. 2001; Wright et al. 2001; Fuhrer et al. 2003. 58 59

35

was offered as the test product.65 The participants were given a choice between using the Z1010 or their own mobile phone, provided it was equipped with the same functions. 6.5

PROCEDURE The data collection began with the first individual meetings with the participants and project staff. At this first meeting each participant filled out the three evaluative instruments and was informed about the focus group, what it was about and when the first session would be held. Prior to each focus group meeting the participants were contacted via both e-mail and SMS. They were asked to respond and say whether they would be able to attend. When all the members of each focus group had completed the ratings, the first group meeting was held. The theme of this first focus group meeting was: What do I forget, and what things are important for me to remember? Within two weeks of the first meeting, the second focus group meeting was held.Herethediscussionrevolvedaroundthestrategiestheparticipantsuse to help them remember and the external memory aids they had tried. Here samplesofdifferentaidswerelaidonthetableasanstimulustothediscussion. This second meeting concluded with an offer to the participants to borrow a mobile phone as described above. All but one of the participants opted to borrow a phone, but several went through the various functions on the phone, but decided to use their own phone, instead. Several of the participants had mobile phones of a later model with superior functions (in their estimation). None of the subjects owned a 3G phone, and no one tried a video conversation during the period. Before the second meeting was adjourned, individual appointments were set up with each participant. It was in these individual meetings that they set their goals with the help of GAS. These meetings all were held within two weeks of the second focus group meeting and marked the beginning of the trial period. The subjects were instructed to start using the mobile phone as an external memory aid to help them remember the things they tended to forget even though they considered them important to remember. They were also encouraged to use the functions in the phone that might help them remember: e.g., the camera, voice recorder and reminder signal. The staff members were available throughout the trial period in case the subjects needed support. They also contacted the subjects by telep65

36

Hallengren & Hed 2004.

hone during the period. The contacts were documented. The mobile phones used in the trial had been delivered without software or manual. The subjects were supplied with a manual (in hard copy) from the manufacturer and a CD with the accompanying software that would allow them to synchronize the mobile phone and their PC together with a set of instructions from the project group. Several of the subjects were lent supplementary equipment in the form of a ‘handsfree’ and USB cables. The trial period was two months long. At the end of the trial period the respective focus groups were once again convened. The topic this time was what requirements an external memory aid must fulfil. The subjects returned their mobile phones, and appointments for another round of individual meetings were made. At the final individual meetings, the subjects followed up their goalfulfilment using GAS. Procedure:

 

6.6

Ratings

Focus group 1

Focus group 2

Trial period

Focus group 3

GAS 2

GAS 1

ANALYSIS The self-rating was compared with descriptive statistics in order to see how the individuals in the respective groups rated their day-to-day memory capacity. The ratings indicated what they wanted to remember and what they forgot. This information was used to help specify the subjects’ requirements of an external memory aid. The focus group discussions were recorded on tape and transcribed verbatim. An observer registered reactions in the group and the interaction

37

between group members. These notes were added to the transcripts. Thereafter, the transcripts were subjected to content analysis. The content was coded, and the codes tabulated to identify the demands the subjects made of an external memory aid. The results from the respective groups were then compared to determine the feasibility of designing an external memory aid that would suit ‘everyone’, irrespective of their cognitive ability. 6.7

DISCUSSION OF THE METHODS The participants were selected purposively with an intention to form a strategic sample. Unfortunately, it proved difficult to recruit enough individuals to choose among so that the sample could fill all the criteria that had been set up. The spread in level of education and occupation was not as broad as we had hoped. Still, many different perspectives and experiences were represented in the respective groups. The focus group meetings were held in a relaxed atmosphere, and the participants demonstrated considerable understanding and empathy for one another’s situation. The question is, whether the possibility of offering compensation for lost working time and/or the option of keeping the trial apparatus might have facilitated recruitment. Some individuals dropped out of the study as early as the recruitment phase. These participants had signed a ‘letter of intent’ to participate and authorized the project staff to make relevant inquiries. Appointments for the first individual meetings had been made, but they did not come. All three groups experienced drops-outs in this early phase. The explanations given were very general: lack of time, or they had forgotten the appointment. In the next phase, the self-ratings a few more dropped out; once again, all three groups were involved, but mostly Groups 2 and 3. Most of those who dropped out at this stage were undergoing rehabilitation. The self-ratings had brought up difficulties that several of them had not been fully aware of. Here, too, the explanations given were general: lack of time, not enough energy to take part. In retrospect, it might have been better had we excluded individuals who were undergoing rehabilitation, inasmuch as they are focused on activities that are of much greater importance to them personally and do not have the time and energy to take part in something that has no direct personal benefit in the short term. Focus groups are often described as a time-saving research method. This may be true in terms of the number of interview sessions and docu-

38

mentation of the statements made, but recruitment to and making sure that the participants actually did attend the sessions was very time-consuming. Several participants expressed regrets that they could not come to the appointed time — some far in advance, others at the last minute. Whenever the number of participants was fewer than three, the sessions were canceled and a new time scheduled. At the very last focus group meeting, the third participant did not come, despite assurances earlier in the day that she would be there. This meeting was held, anyhow. The focus groups proved to be an effective way to gather a variety of perspectives on a limited subject. Repeated meetings with the same participants also lent depth to the discussions and provided an opportunity to revisit details that had come up in earlier sessions. The interaction in the three groups differed, however. The members of Group 2 did not discuss things with each other to the same extent as the other two groups. Instead, all comments were directed to the facilitator in all three sessions. The transcripts and subsequent analysis of them revealed a number of valuable perspectives, nonetheless. The members of Group 3 found it hard to express themselves in concrete terms, and it was necessary for the facilitator to take more active part in Group 3’s discussions than was the case in Group 1. The trial period was a very good way to elicit concrete and practical views on what an external memory aid must do. Had the participants only used the mobile phones occasionally, they would not have been as able to express their views on what was important to them in day-to-day living. Use of GAS helped the participants to identify important objectives and activities that required the use of an external memory aid. The question is whether the trial period would have been as focused, had the participants not identified and documented what was important to them beforehand. This was one of the reasons we chose to use GAS. The trial period would have benefited had the research team maintained more frequent contacts with the participants, both to give them support and to document the participants’ views and requirements more systematically as they arose. There is always a risk that they will be forgotten. The choice of GAS rather than the Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST) was primarily because the focus of our study was not evaluation of a product.66 Choice of the trial apparatus was not within the project group’s remit. 66

Wessels et al. 2004.

39

Still, characteristics of the product may have influenced the outcome of the study. The mobile phone used proved to have serious shortcomings. For one thing, the battery capacity in some of the phones was poor. Several of the participants reported poor reception, for which reason they chose not to use the phone. The mobile phone model was chosen before the initial phase of the pilot study had been completed. Had the ratings and first sessions of the focus groups been completed, the specifications would have been different. In the third focus group sessions participants commented that the keys were hard to use and the menus and execution procedures were not logical. If these shortcomings had been known and avoided in the selection process, and had the project not had such a tight budget, the focus group discussions would probably not have dwelled so much on such basal requirements as battery power and reception. Other, less obvious requirements might better have come into focus.

7

MEMORY CAPACITY IN DAILY LIVING In the present study we used three different methods of data collection to describe the participants’ memory capacity in everyday situations. We have used two rating instruments and focus groups to identify the things the subjects forget, in what ways they forget, and what is important for them to remember. The three groups appear to differ in some principal respects. Therefore, we have chosen to discuss the material group by group as well as in terms of each phase of data collection.

7.1

GROUP 1 Everyone in the group reported forgetting at least one thing rather often. Most memory failures have to do with not registering people’s names after meeting them, forgetting people’s names, not locating items in a store (although they are there), and misplacing things. These kinds of failures are noted by at least two in the group. One of the members of the group misses people’s names rather often, but never, seldom or only occasionally makes any of the other 24 errors. On the other hand, another member of the group frequently makes

40

cognitive errors. S/he often misplaces things, forgets to answer important letters, loses her/his temper and regrets it afterwards, and confuses right and left. S/he often goes from one room to another and finds s/he has forgotten what s/he intended to do, forgets to switch out the light, turn off the burner on the stove, to lock the door, and s/he often misses what others have said when s/he is occupied with something else. It happens rather often that s/he cannot find what s/he is looking for in a shop, forgets appointments, becomes distracted and breaks off what s/he was doing, and forgets what s/he came to the store to buy. But in this group only one or two of the participants forget something they had planned practically daily. There are some other problems that members experience roughly once a week, but here, too, only one or two of the participants in each case. The only problem that several people often experience is forgetting to water their plants. No one in the group ever forgets to unplug/switch off the iron, lock the door, take a shower, put on an article of clothing, shave, brush her/his hair or teeth, or check her/his calendar. All the members of the group agree that it is a serious problem if one forgets to unplug/switch off an iron or to lock the door when one leaves home. They consider it a minor problem or no problem at all to forget things like taking out the rubbish, to enter a room but have forgotten what they were about to do, to absentmindedly follow outdated routines, or to forget to water the plants. Nor is it a problem — or only a minor problem — to put sugar in your coffee twice, to forget to clean house, or to forget to turn off the heater. Everyone in the group say they forget things when they are interrupted. Three out of four remember things that are very important to them or to someone else. Three out of four tend to forget to do things if a number of other activities ‘intervene’ or of they become occupied with some other activity. No one in the group feels they need an external memory aid. 7.2

GROUP 2 This group makes cognitive errors more often than either of the other groups. One in the group often makes errors of all 25 kinds. Everyone in the group frequently misses the name of people they meet, lose their temper and regret it later, and are thinking about something else when they should be listening to what someone is saying. They often fail to find things they are looking for in a shop (although it is there), they often find

41

it hard to make a decision, often forget people’s names, are often distracted from one task and start doing something else instead, often misplace things and often forget what they were about to say. Two in the group frequently make cognitive errors in 19 of the 25 categories. Everyone in the group forgets to buy something in the shop, enters a room but has forgotten why, forgets what they needed to buy and forgets what they wanted to say in a conversation — such things happen at least once a week. Three out of four at least once a week forget to pass on messages, forget someone’s birthday, or forget to make a telephone call. No one in the group who does any ironing forgets to switch off/unplug the iron; no one who has manually controlled heating appliances forgets to turn off the heater. No one ever forgets to put on an article of clothing. Two members of the group feel that many of the memory failures brought up are major or very serious problems. Everyone in the group considers that it is a serious problem if they miss an appointment with a therapist or a doctor or if they forget to lock the door when they leave home. Three of four consider it a serious problem if they forget to pay their bills or if they leave the stove on. There is no area of the 25 that the members of Group 2 take lightly, i.e., consider a memory failure to be but a minor problem. Everyone in the group say they forget what they should do — not when they should do it. The same goes for things that others have asked them to do. The more things they have to do, the more likely they are to forget. This is true of all the group members. Everyone says they are dependent on others to remind them, but no one says that they need a calendar or to-do lists. All tend to forget if there is a long interval, filled with other activities, before the event or task is to be done or take place. If they are occupied with something or are interrupted, everyone in the group tends to forget what they were about to do next. 7.3

GROUP 3 The members of Group 3 make only marginally more cognitive errors than Group 1. Two or more in the group often need to re-read something they have just read, often fail to register people’s names, often say things that they later realize may have hurt others’ feelings, think about something else when they should be paying attention, and begin projects but then become distracted and start doing something else.

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There are surprisingly many areas where no one in the group experiences memory failures often. One or two may occasionally lose their tempers and regret it later, forget to answer a letter or miss a turnoff from a road they seldom use. No one throws things away that they had planned to save (or vice versa), no one forgets what they were planning to buy in a shop, and no one forgets what they were going to say other than occasionally. Four of five have to check to make sure that they have done what they planned to do, either daily or at least once a week. Otherwise, there are only scattered cases where individuals in the group forget anything daily. There are some things that one or another in the group forgets about once a week. Just as in Group 1, one person in particular is forgetful, forgetting at least once a week. What distinguishes Group 3 from the other groups is the frequency of the response, “Not applicable”. Many in this group do not use an iron, do not hang up or collect laundry from a clothesline, do not fuel their cars, fill the radiator or the headlight and windshield cleaner fluid. There is no kind of memory failure that everyone in the group considers a major or serious problem, nor is there any area that everyone says is only a minor problem or no problem at all. Everyone in the group remembers things that are important to themselves and to others, but everyone also says that the more things they have to do, the more likely they are to forget something. And everyone says that if a long interval elapses and a lot of things happen before they are to do something, they tend to forget to do it. No one in this group says he/she is dependent on an external memory aid, but three of five say that they need someone to remind them.

8

A MODEL The aim of the pilot study was to gain a better understanding of the demands individuals with and without cognitive disabilities made of an external memory aid. But the overall goal was to describe a model for user participation that might be used in design processes to develop products according to the principles of Design for All. The model takes its star-

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ting point in the principle that the specified requirements of an external memory aid should result in a product that works for as many people as possible, with and without cognitive disabilities. The benefit to the individual subject consists in receiving a functional external memory aid. We were aware from the beginning that we would encounter a number of difficulties arising out of the fact that the target group had cognitive disabilities. Would the participants be able to remember satisfied/dissatisfied they were with the various functions? How would we handle the circumstance that many participants might find it difficult to think in abstract terms? Can individuals with cognitive disabilities foresee how they will deal with a practical situation? Would it be necessary to coach individuals with memory disabilities so that they might learn how to use a new product? Would their speech abilities suffice to allow them to express what they thought? We were also concerned about the possibility that participation in the pilot study might imply a risk for those with the most pronounced cognitive disabilities. Might the focus on cognitive problems and memory failures make the subjects more aware of their shortcomings, so that they became frustrated and felt inadequate? In the short term such feelings may imply a risk provided the individual does not receive help in finding strategies to compensate his/her shortcomings. On the other hand, precisely this consciousness might be an important step toward developing and adopting new and effective strategies. In our work with the project design we identified six steps in the process itself. First, it is necessary to identify the groups that should be included in the design process. Secondly, we needed to find out what people forget, and what they consider important to remember. Third, we needed to know the strategies people used to help themselves remember. The fourth step was to identify what each individual wanted to remember and how an external memory aid might be used to help each to succeed in doing so. Then, it was time to find out if each could achieve his/her goals with the help of an external memory aid. Finally, the project would produce a list of the functional requirements the trial panel made of a product that was to serve as an external memory aid. The model is the fruit of the work of an interdisciplinary project group having a variety of competencies. The study includes specialists in brain injury rehabilitation and people with extensive experience of user-centered design and human-computer interaction. These competencies should

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be represented in a project group of this kind; the group should also include manufacturing and/or product competence. 8.1

THE MODEL, STEP BY STEP

8.1.1

STEP 1 Before the actual pilot study gets under way, the project group should identify the various groups that may be expected to make specific demands of the product in question. In the present study we limited our focus to individuals with cognitive disabilities and impaired memory. Many diagnosis groups can suffer disabilities of these kinds. Therefore, strategic or purposive sampling should be used to ensure that as many perspectives as possible are included from the start. Similar limitation of focus and purposive sampling may be used to specify the requirements various products should fulfil.

8.1.2

STEP 2 In this step we identify the users’ needs and in what ways they will use the product. Since the present study has to do with external memory aids, we started out by identifying the things our subjects tend to forget and what they consider important to remember. This was accomplished with the help of three validated rating instruments that have been used with individuals having similar diagnoses or disabilities as those in our trial groups. The search for appropriate instruments was undertaken after we had identified the memory failures and disabilities that would be in focus. An extensive search of the literature was undertaken to canvass existing knowledge concerning cognitive disabilities and memory failure. The instruments were located with the help of the OVID and PubMed data bases. We selected three instruments: one that measures individuals’ social integration and was developed to determine the degree of improvement in individuals’ with functional disabilities; one that measures various cognitive errors in everyday situations; and, finally, one that focuses on difficulties in remembering details relating to personal hygiene and household chores. These ratings were followed up with a focus group with discussions of what the participants forget and what they consider important to remember.

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8.1.3

STEP 3 In this step the focus rests on the participants’ habits and routines today. Do they use another product? Other strategies and situations that make life easier? What is their experience of various products? Again, the focus in this study rests on memory and ways of reminding oneself. A focus group having the same participants as earlier discussed different ways of jogging one’s memory and the participants’ use of external memory aids. One of the ratings instruments had a section that focused precisely on these aspects.

8.1.4

STEP 4 Here the focus is on what the individual wants to use the product for. In this step we used GAS (Section 6.4.3) to focus on the practical benefits the subjects expected of the product. Formulating individual goals for the use of a specific memory aid — a mobile phone with specified functions — stimulated the participants to use the various functions in new and more focused ways. The use of a personal goals document contributes to the participants’ motivation and focus on achieving results.

8.1.5

STEP 5 Once each participant had formulated his or her own goals, the trial period got under way. Hands-on testing of a product to see whether and how it can improve one’s day-to-day life situation enables the participants to formulate concrete requirements and to evaluate the product’s various functions. A trial period that is long enough to allow the participants to use the product in a variety of situations and to establish a routine of using it elicits valuable information from the participants that otherwise would not have come to light. During the trial period, the project group and the participants should have regular contacts, to offer/receive support but also to document requirements and reactions in a systematic fashion as they arise. There is a risk otherwise that some information will be forgotten and not be recorded.

8.1.6

STEP 6 By the end of the trial period the participants are ready to formulate their requirements. The use of a focus group permits discussion of the respective aspects from multiple perspectives. The participants in the present study formulated the requirements an external memory aid should fulfil;

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the discussion was not limited to any one device, even though all the participants had used a mobile phone during the trial period. The participants’ explanations of why they preferred some memory aids over others provided valuable, constructive critique. These critical points were then reformulated as requirements of the product in question. The requirements were subsequently structured and are discussed in Chapter 10. They are generally applicable and may be used in the testing and development of several products.

9

THE NEEDS AND REQUIREMENTS OF THE TARGET GROUP The aim in this chapter is to concretize and visualize the requirements of an external memory aid that emerged in the pilot study. First, we describe the target group’s situation, their problems and strategies; thereafter, we present three personas67 to visualize the requirements and scenarios that outline possible ways to meet the respective persona’s requirements. Chapter 10 then revisits the concrete requirements pinpointed in this pilot study. The requirements that came to light have to do with both benefits to the user (functionality) and the appliance’s user-friendliness. Consequently, there are some direct links to the principles of Design for All. Designing and developing products according to those principles must take both aspects into account. That the device or apparatus does the things people need it to do is equally as important as that it is easy to use.

9.1

USERS’ PROBLEMS To get a grasp of the problems participants in the pilot study have to cope with, we asked them what they usually forget and what they consider important to remember. This information gives us insight into the types of situations where a memory aid is needed and the relative importance of the respective functions. Many of the participants reported having trouble remembering appointments, meetings and other activities, and these memory failures had the most negative consequences in their everyday lives. “... it has a lot of 67

Section 9.3.

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consequences, you make a kind of a calculation, I think.” They also found it difficult to remember meetings in working life; activities in their private lives were easier to remember, many said. Those who live “partitioned lives” — particularly those who have children in the home only periodically — had more problems remembering activities in their private lives, since their situation varied quite a bit. Other participants, particularly those who suffered chronic pain due to whiplash syndrome, reported that their memory seemed to function much better when they were on holiday than in day-to-day living. The same group found it difficult to assign priority to different messages/information that they received; when they received too much information, they became overwhelmed and suffered negative stress. Many participants said they had problems grasping the immediate future. How they defined “the immediate future” turned out to vary quite a bit: from a single day to a week or a month ahead. Several participants described how they had the habit of sitting down once a week, generally on Sunday or Monday, to survey the coming week to see what events and activities they had planned. Many participants said they even forgot to do things they have a responsibility to do. This problem varied considerably among the participants, but examples of the kinds of things that were difficult to remember included shopping, taking one’s medicine, turning out lights, locking the door, vacuum-cleaning, taking a shower, picking up the children from daycare, doing the laundry and and taking out the rubbish. If they remember to go shopping, they may well find they have forgotten their shopping list at home. And even if they remember to take the shopping list along to the shop, they may forget to use it. Participants tend to leave items behind them: for example, sunglasses, tickets or various external memory aids like Filofaxes or their mobile phones. They also lose things (pocketbooks, shopping and to-do lists, etc.), forget where they parked the car, forget presents they have bought. The participants talked about difficulties remembering codes, passwords and numbers of different kinds. All have had problems remembering names, in some cases even their own names. Some had problems remembering what others look like. A problem several participants mentioned was difficulty remembering what someone, e.g. a doctor or therapist, had told them — which caused considerable anxiety and stress. They also forget what they have heard

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and said in conversations and things they have seen and done. This last difficulty was particularly problematic when it related to activities within the family circle, particularly activities with their children. Several of the participants consider it important to remember things that have major consequences, such as flight reservations, meetings with clients, appointments with one’s social security officer or doctor’s appointments. In the more intimate sphere, forgetting things one has promised the family, especially children, can also have major consequences. The participants considered family and friends most important in their daily lives, but the consequences of missing activities with them are not as “major” as the consequences of missing appointments in working life and in private life. The participants consider it important to remember holidays and happy experiences, as they do what they have discussed with others, like their doctors. They also consider it important to be able to remember PIN codes and simple things like turning off the stove and taking a shower. 9.2

STRATEGIES All the participants had some kind of system to help them get by and to help them remember planned activities (and with whom). Many used double systems, a mobile phone and a Filofax and/or wall calendar. All those who had children in the household had a wall calendar with the children’s activities pencilled in. But, many said that it was difficult to find a fully workable strategy: What was the mobile phone there for? How should I use the Post-Its? Where did I jot down that piece of information? The participants discussed their personal strategies and the behavior they developed to make them work. Their discussions provide insights concerning what functions an external memory should have in order to improve conditions for their users in day-to-day living. Many participants said that helped to have routines for various activities. Established routines help them do things like remember to take the right items with them when they leave the house. One participant always puts things in the same place, e.g., wallet in left pocket, mobile phone in jacket pocket, everything on the table in the hall. When it comes to remembering rendezvous of different kinds, some write Post-It messages and stick them at eye-level on the door, inside a cupboard or on the refrigerator. Other strategies for reminding oneself are to call one’s own answering machine or to send an e-mail to oneself.

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Many of the participants used mobile phones to help them remember to do things; they entered reminders or dates in the phone’s calendar. Others used mobile phones in combination with their PCs, which they synchronized so as always to have access to updated information and to be able to enter new activities more easily than on a mobile phone. To shorten the time it takes to use the keys on a mobile phone to write information, participants make use of abbreviations and codes, but it is sometimes problematic when the codes are difficult to interpret and the individual cannot remember what they stand for. Reminders in a mobile phone were not always effective, and some users entered reminders both the day before and the day of the event they wanted to remember: “I think maybe the important thing when you have a meeting is to have an alarm that goes off at 10 o’clock sharp ... and then I try to think where I’ll be when I hear the alarm and the time I’ll need to get from there to where I’m supposed to be. Things like that.” For short-term reminders many participants used a kitchen timer. The problem with using a timer was remembering where one put it last. As one participant put it: “And then, when you’re cooking, you have to run around the house looking for the timer, ‘cause you’ve been using it for something completely different.” One common strategy is to use family members or personal assistants; for example, many call home from the store and ask what they were supposed to buy. But most of those who use this strategy would like to develop a better strategy, one that would make them more self-reliant. One strategy that they use instead is to write down and then count the items they need to buy, repeat the things they have to remember, and relate the number to dates or patterns. Many said that the mere act of writing things down helped them remember, but they have to do it at once: “Well, as I say, I have to get hold of a scrap of paper or something quick; otherwise, someone else will come along and ask another question, and then I’ll have forgotten.” Besides lists on paper, the participants used Filofaxes, mobile phones, calendars (sometimes several), wall calendars, calendars in their PCs. One creative use of a mobile phone was to take pictures of things, e.g., a timetable or the car in a car park and then use the picture to find the right bus or the parked car. An important strategy for many participants was to spend a certain

50

amount of time each week to sit down and study the memory aid’s display for the immediate future and then try to visualize what it looked like. “The immediate future” was defined differently by different participants, depending on the individual’s situation and diagnosis; it might be a day, a week or a month. Many participants tried to develop their memories so as to become less dependent on family members and/or external memory aids; the greater the challenge, the more they developed, they said. 9.3

PERSONAS Personas are fictitious individuals, composites that are representative of a group. Creating personas is a way to visualize and concretize the requirements of the different target groups. Personas make it easier for others — product developers, for example — to relate to and remember the group’s needs and requirements. They are tools that can facilitate communication in all kinds of developmental projects. Personas are used as a design tool to help develop interfaces and functions, to set priorities regarding functions and to support discussions of different solutions.68 One way to present personas is to create life-size figures that are present when the target group’s requirements are presented and during the product development process.69 In the following pages we introduce three personas, each of whom represents the target groups whose requirements we have gathered in the pilot study. We are convinced that products that meet Ulla’s, Daniel’s and Rickard’s requirements will meet the requirements of a good share of the population.

ULLA Ulla, 54, is married to Börje and is the mother of Stefan and Christine, who both have left home for studies in Stockholm and Gävle. Ulla is a teacher of languages at Järlinds Elementary School in Falun. Both Ulla and Börje have lived in the province of Dalarna all their lives, except for their college years in Stockholm.

68 69

Cooper 1999; Cooper & Reimann 2003. Gudjonsdottir 2001.

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Ulla is a very active woman with a busy social life. She goes ‘powerwalking’ with friends three times a week, and she sings in a choir. Occasionally, the choir holds concerts in other towns. Two years ago they took part in a songfest in the Globen Arena [a gigantic geodesic dome] in Stockholm. On the way home, the bus skidded off the road and Ulla received minor injuries. Ulla and Börje have a small cottage at Toftan i Riset, north of Falun. They spend their holidays there and as much of their leisure as possible, gardening and taking it easy. Ulla enjoys her job as a teacher, even if it can be very demanding at times, and she likes her pupils. She is eager to learn new teaching techniques and wants to show her pupils how much fun, and how useful, it is to know a foreign language. Ulla uses a PC in her work, and she has a mobile phone so that she can be reached by colleagues and pupils. Ulla is not shy about using new technology — and if there is a problem, there is always someone around who can help to straighten things out. Ulla uses her PC to put together material for her teaching and to do administrative tasks for the school. She also has a combined e-mail program and calendar, with a box where she stores information having to do with her teaching, pupils’ homework, meetings with colleagues, various courses she is taking, as well as private information such as travel plans and her private address and telephone list. ULLA’S GOALS • To remember meetings and activities • To better survey her ‘schedule’, i.e., planned activities and spare time • To find more time to be in her cottage. SCENARIO Ulla has had the same mobile phone for several years now, and her principal has encouraged her to upgrade. Ulla has checked out the different models on the market. She has given some thought to what she needs the phone for and how she will be using it, both at work and in her leisure time. Ulla is very active and has many events to remember each week. Since the accident, she finds it a little difficult to keep many things in mind at the same time. Consequently, she has decided to buy a mobile phone that has ‘organizer’ functions, MMS and a digital camera, which looks like it would be fun to have.

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Ulla goes to the shop to see what they have in stock; she checks how the different models feel in her hand, how heavy they are, how easy it is to talk in them, and how user-friendly the keypad is. She tries models that have, and models that don’t have touch screen displays. Finally, Ulla chooses a model that feels good in her hand, that folds up, has a fairly large touch screen in color, and has all the functions Ulla wants. The salesperson invites Ulla to select the functions via a computer in the shop, and they visit the phone’s home page. There they choose address book, calendar, reminder, to-do list, SMS, digital camera, and the option of synchronizing the mobile phone with her PC. They select the proper time zone, language, ringing tone and ‘shell’. When all this has been done, they update the phone, which is then ready for use. Ulla is satisfied with her purchase, thanks the salesperson and leaves the shop. Now Ulla needs to enter all the information she wants to have in the phone, and she decides to do it at work, since much of the information is stored in her PC. Finally, she synchronizes her mobile phone with the information in her PC.

DANIEL Daniel is a 29-year-old man from Ängelholm, now living in Göteborg. He has had a steady relationship with Jennifer several months, and they like one another’s company. They have started thinking about getting an apartment together. Daniel works in Telia’s Customer Services department, where he advises subscribers about Telia’s broadband services. Daniel is an energetic and outgoing fellow who enjoys working with people and being able to solve their problems and make their lives easier. Lately, though, he has started thinking about changing jobs or getting some experience of working with corporate clients. In his leisure time Daniel plays in a country-and-western band, The Lonely Blue Boys. They have become good enough to start playing in clubs in town and in nearby towns. They have a gig at a party for Telia staff some weeks from now, and they are rehearsing a lot because Daniel

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is looking forward to showing his friends at work just how good the Blue Boys are. Besides his music, Daniel plays indoor bandy with his friends. Except for staff meetings, Daniel sits in front of a computer all his working day. He uses the computer to plan his work, to communicate with clients and colleagues via e-mail, and to keep track of his shifts and various appointments. Part of Daniel’s work concerns ways to improve and effectivize the telephone service within Telia. Daniel makes frequent use of his mobile phone, and he likes to have the latest model — which can be costly. He has a PC at home, too, which he uses for his private life and to play computer games. DANIEL’S GOALS • To keep track of his shifts, games, rehearsals and gigs • To be able to work from home • to have time to be together with Jennifer and his friends SCENARIO Daniel is on his way to a game of bandy, which he enjoys very much— he plays every Wednesday at 4.15 — when his mobile phone rings. It is a job placement agency. They have found a job they think he might be interested in and wonder if he can interview for it the next day, Thursday, at 3 PM. Daniel, who is equipped with an ear mold, checks his phone’s calendar, which is synchronized with both his PCs, the one at the office and the one at home. He sees that he can make the appointment. He makes the appointment and winds up the conversation. Daniel continues on his way to his game, but he knows he had better register the appointment somehow; otherwise, he may forget it, even though it is a very important meeting. So, he enters it onto his calendar on the mobile phone. He uses the voice-activated service on the phone and says the word “Calendar”. Then he says, “Add: private meeting with Sven Svensson Thursday at 3 PM.” The calendar confirms what he has said, and the appointment is registered. Daniel has chosen a pocket-size model of a mobile phone, which means that it is not easy to keypunch information into it, which is why he prefers to use voice-activation, both on the mobile phone and on his two PCs, at home and at work. After his bandy game, Daniel starts off home. On the way he calls Jennifer and tells her about the interview. She is happy to hear that he might

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be staying in Göteborg after all, instead of moving to Stockholm. When Daniel comes home he sits down and synchronizes his mobile phone with his PC, and the interview Thursday pops up in his calendar. But since he specified that the meeting was “private” it will not be synchronized with all the information in his PC at work. The time slot will be marked “busy”, but there will be no information about what the meeting is about. Having done this, he visits the company’s web site to find out more about them in preparation for the interview.

RICKARD Rickard, who recently turned 40, is married to Eva and is the proud father of Oscar, Filip and Julia. The family lives in an apartment in the Gärdet district of Stockholm. Rickard is an economist and does costing estimates for the construction firm, PEAB in Sollentuna, a suburb of Stockholm. Rickard’s specialty is costing tunnel construction, which PEAB frequently does on contract from the National Roads Administration. Both Eva and Rickard have demanding jobs. Eva heads up a department at a private Stockholm hospital. In their leisure they try to stay at home and be together with the children. Rickard likes to read, both for himself and for the kids. He occasionally plays chess with his friend, Anders. Rickard is also treasurer (and board member) of the home-owners’ association for their apartment building. Rickard has resumed his job after a long period of sick leave. He likes his work, but feels that the rules surrounding public procurement are sometimes unduly burdensome, and some project s are not very well specified. In such cases, it is important to have a good relationship with the client and with PEAB’s engineers, who help him with his estimates. Rickard is pleasant and easy-going and usually finds it easy to establish contact with everyone involved. Rickard uses a PC in his work quite a lot, but he also takes part in many meetings and spends a lot of time on the phone. Other tools he uses are a Filofax, desk calendar and a number of notepads that he uses to plan meetings and take notes in meetings. He uses his PC to write his parts

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of the tenders and to do the necessary calculations. Rickard also uses the computer to liaise with everyone involved in the costing process, to keep abreast of the progress of the estimates, to find information about deadlines, to whom the bid should be submitted and in what form. He also uses the computer’s Tenders Log to inform himself of new inquiries. RICKARD’S GOALS • To develop a workable strategy for planning his time • To service his network of contacts in order to maintain good relations with clients and colleagues • To have time to be with Eva and the children and to play chess with Anders SCENARIO Rickard is in the process of finalizing the estimates for a major project, with many different people involved, many meetings and discussions via e-mail and telephone. Rickard remembers that he has a meeting at 11, but he is not sure where or what it is about. He consults his Filofax, but finds no note there. But there is a note in his mobile phone about a project meeting at a client’s office. Rickard feels a need to confirm the date with a colleague. Rickard has a modern, customized mobile phone with a number of functions that he selected when he bought it. He chose only a few, as he did not want a lot of functions he would never use. At the time he was satisfied with his Filofax, but now he finds it inconvenient to have information at different locations. He uses the mobile phone more and more, as he generally has it with him at different meetings and on business trips. In order to make the best use of his mobile phone, Rickard wants to add a calendar function to it. He goes to the phone’s home page and quickly locates the section where he can add functions to the phone. He selects two new functions: the calendar and a to-do list. Once the telephone is updated the home page offers to help him transfer information from other external memory aids that he has been using. With this support he enters information from his Filofax to the calendar on his PC, which he then synchronizes with the mobile phone. When the procedure is done, he forwards the note about the meeting to his colleague and asks for confirmation. He receives a confirmation, but learns that the meeting has been moved up, from 11 to 9 AM. Rickard

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changes the note in his PC, synchronizes it with his mobile phone and puts the phone into his case, together with the material he will use at the meeting, since he now plans to go directly to the meeting from home.

10

USERS’ REQUIREMENTS OF AN EXTERNAL MEMORY AID, OR WHAT A MEMORY AID SHOULD BE AND DO One of the aims of the pilot study was to identify the functions and qualities users look for in an external memory aid. The present chapter discusses the preferences and requirements that were brought up in the focus group discussions. Focus groups, however, are by no means a substitute for involving prospective users in the design process itself. Extensive user participation and recurrent testing of prototypes are required in order for product design to live up to the seven principles of Design for All and to meet different users’ requirements. In the following we shall first consider the requirements for learning/ mastery and use — user-friendliness — and then requirements relating to functionality — user benefit. Finally, we discuss requirements relating to the hardware — both benefit and user-friendliness. The features are discussed in order of priority in each section.

10.1

GENERAL REQUIREMENTS RELATING TO LEARNING/MASTERY70 One requirement is that an external memory aid should not entail carrying around an extra appliance. Therefore, the participants were favorable to the idea of a combined memory aid and mobile phone. As the participants were interested in a combined mobile phone and external memory aid, they had requirements of the mobile phone per se. It should function well: that is, be easy to use as a phone and have good reception.71 They also wanted the phone to register incoming calls, even when switched off, as they often had cause to switch off their mobile phones. As for the SMS function, the participants wanted a record of SMS messages received and a confirmation of the reception/reading of messages

70 71

For a detailed list of the requirements see Annex F. Several participants who used the test model, Z1010, found that its signal reception was less satisfactory than the mobile phone they normally use.

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they sent. They also desired an easier-to-use word list, one where it was easier to switch between languages (first, second and third). The participants were also sensitive to the costs involved, particularly when the phone was not an employer-paid tool or fringe benefit. Those who did not have a mobile phone at work were unwilling to pay more than SEK 1500-2000 (USD 200-300). The most important requirement the participants made of the memory aid itself was that it should not be difficult to learn how to use it. They should not have to study a manual to be able to perform simple functions that they often use. The participants also want the menu functions to be intuitive, i.e., logical and consistent; it should be easy to navigate the menu, and the alternatives should be clear and easy-to-interpret. Some of the participants thought it might help if the functions were expressed in symbols rather than words. This idea has surfaced in other studies, as well.72 Clearly, it would benefit those who cannot read or who find reading difficult. It would also make it easier to enter information into the phone. But symbols are somewhat problematic inasmuch as they may be interpreted differently by individuals from different backgrounds and cultures. It is therefore very important that symbols be thoroughly tested by a variety of users in the product development process. The participants also expressed appreciation of ‘shortcuts’ or express commands for commonly used functions, they also liked to be able to personalize the shortcuts themselves. In this connection the participants also expressed the requirement that the memory aid should be quick, that they not have to spend time looking for functions or wait when switching from one function to another. Many expressed irritation over mobile phones and PCs that were slow. As one participant put it: “... there’s what they call micro-stress, there’s this second or maybe seconds — like with PCs in early days — when you’re waiting for the picture. It’s maddening!” Other important requirements are being able to personalize the memory aid on two levels: the functions, especially their layout and the display, but also the assortment of functions the device offers. These points are also confirmed in several other studies,73 where users have asked for modulebased software that allows them to add and delete functions according to their needs. One participant held forth the advantages of a Filofax over the digital appliance in the trial, as follows: “... you can choose the size you want, big or smaller. You can choose the contents, there’s a 72

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73

Hallengren & Hed 2004. Schneiderman 2003; Hallengren & hed 2004.

regular calendar ... you can have a whole week at a time, on two pages, a week on seven pages, on a single page... and then all the functions, memos, notes....” 10.2

REQUIREMENTS RELATING TO FUNCTIONALITY In this context, several participants also wished for separate interfaces in the memory aid, one for work-related subjects and one for private life. That way, they would have only the functions they need in the respective spheres, which may be quite different. One participant even wondered if it were possible to have room in the phone for two SIM cards. One function that participants considered important was an address book where they could enter all their contacts. None of the participants could remember telephone numbers other than to the family and close friends. Even so, it is virtually impossible to remember all the numbers we need to use today. The participant were not interested in pictures of their contacts, unlike the results reported in other studies.74 The calendar was another function that the participants said they needed and specified requirements for. The most important requirement was that it should be easy to enter items; they did not always specify how they wished to do so, but keyboards, handwriting and voice were mentioned. Voice command is a function mentioned in other studies.75 A prototype of a voice-steered calendar has been developed at the Royal Technical University in Stockholm.76 Other suggestions were a fixed set of functions to choose from, and the possibility to add new options as the need arises. They also wanted to be able to choose between noting exact times and hours (slots). Many of the participants already used different forms of external memory aids, and they felt it was important to be able to use them to make dates with friends and colleagues. They would like to be able to work with a joint calendar, i.e., one shared between several users. That it was easy to make back-up copies and easy to retrieve the file were other important qualities. Most important of all, however, was a display of the calendar that allowed the user to survey the immediate future. The period of time varied between individuals, from the coming day to the coming month, but it could also vary between kinds of activity, for which reason the participants wished to be able to adjust the display accordingly. Since the mobile phone’s display was not very big, the participants wondered if they might 74 75 76

Hallengren & Hed 2004. Hallengren & Hed 2004. Pakucs & Huhta 204.

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not be able to display the calendar on their TV screens, for example. Or, on a computer screen or perhaps project the image onto a wall. Many participants pointed out that switching from one kind of memory aid to another — e.g., switching from a Filofax to a mobile phone, or ‘upgrading’ to a new model of mobile phone — takes a lot of time and effort. They felt the need for some form of support or ‘back-up’ for the various procedures. In connection with the requirement that it should be easy to enter information on the calendar, it was quite clear that the ability to synchronize the memory aid and a PC was important. It should be very easy to achieve synchronization and to initialize the function.77 Once established, the synchronization must be reliable. The function must be compatible with a variety of software (e.g., Outlook, Lotus Notes) and work on both PC and Mac. The participants thought it would be a good idea to have the information on a secure page on the Internet. Some said it would be convenient when they traveled, others pointed out the need for a back-up in case they lost their mobile phone or it was stolen. Another necessary function that an external memory aid should have is a reminder signal (that may also be sued as an alarm clock), which can be used for single events or pre-programmed to work with recurrent events and activities. Reminders of people’s birthdays were mentioned. The reminder function might have different signals for different kinds of events, the participants suggested — which is in line with other research findings.78 They wanted a visual signal, as well — not just sound and vibration. It would be good if the reminder function worked, even when the mobile phone was switched off, but the alarm should be able to be switched off in certain situations, as well. One of the participants related an anecdote from a visit to the cinema: “... I wasn’t sure that it wouldn’t remind me of something, so I took the batteries out.” Another specific situation is when they want to turn off the ringing tone, yet still hear reminder signals. Many of the participants do not switch off their mobile phones so that they can see who is calling, without necessarily wanting to answer the phone. The participants want a function that allows them to jot down notes. Some already use such a function: “I found a better function because some things, I don’t know, for example, what I need to buy ... and I have found a really good function that works like Post-Its in here 77

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78

Many of the participants in this study (all groups) were unable to synchronize the Z1010 with a PC, for a variety of reasons. Hallengren & Hed 2004.

[indicates mobile phone], and I can write myself notes on them.” Others record voice messages to themselves: “Instead of writing myself a note that I might not find again, I talk it into the phone instead, and then I play the message when I’m there in the shop ... it’s really neat.” An external memory aid should also be equipped with a digital camera to allow the user to take pictures of things for future reference. One participant often took pictures of his parked car to help him find it again, and one photographed bus schedules. With a digital camera users can take pictures of people and add the pictures to their address book. Other functions that the participants want is a clock. Some would also like a GPS (Global Positioning System) to help them orient themselves, both at home and when traveling. Many of the participants need support functions that are easy-to-read, even for a layman. As one participant put it: “Most of these manuals, they’re written by engineers for engineers.” The participants also thought that the “Help” function should be keyed to where in the phone’s menu the user is, that is, it shouldn’t be necessary to comb through a long text file. The participants with cognitive impairments would like to have personal support when needed, and they would like access to an instruction video, either on CD, DVD or on the Internet. In other words, the memory aid should be supported by the staff that supports other workplace functions — which is not generally the practice today. 10.3

REQUIREMENTS OF THE HARDWARE The participants even expressed opinions about what a memory aid should look like. It should be attractive. one participant said: “I think the [mobile phone] I bought is so awfully ugly, so I really went out of my way to find something else.” The device should not be very large, particularly for men, who are likely to want to keep it in their pockets. The women in the study wanted it to fit into their purses: “It should be small enough so that it fit into my purse with no trouble.” The participants were also concerned about its weight. A mobile phone should feel good in the hand, and there should be sufficient space between the keys. A woman with small hands should be able to write an SMS without developing “SMS-thumb”. The keys should

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be slightly raised so that they are easily located and provide tactile feedback when pressed. The participants would like to have a touch screen display (preferably in color) with stylus. This is in keeping with the preferences expressed in other studies, as well.79 Some participants said they would like to have a keypad that would allow them to enter information into the mobile phone more easily. The mobile phone used in the trial period, the Z1010, was a fold-out model, but many of the participants found it too bulky. The ability to fold up the phone after a conversation was appreciated: it was as definite as putting down a receiver, and the participants could be sure that the key lock was activated when the phone was shut. On the other hand, folding and unfolding could be difficult for individuals with motoric disabilities. A mobile phone camera has to be at an angle that is convenient for taking pictures. In the Z1010, the camera was placed so that the user had to lean backwards in order to use it. The final requirements were good battery capacity/energy efficiency,80 wireless handsfree and handsfree that you don’t have to plug into you ear.

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CONCLUSIONS An effective external memory aid makes it easier for individuals with cognitive disabilities and impaired memory to live an active life with a greater degree of social participation. An awareness of how individuals describe their experience, needs and preferences is an important asset to those who plan rehabilitation programs. In the case of people with cognitive disabilities rehabilitation programs are often guided by specialists’ assessments of the individual’s problems and appropriate solutions. If the individual’s own strategies can be incorporated into planning, despite his or her disabilities, it should enhance the effectiveness of the therapy. All the participants in the present study, irrespective of cognitive ability, were highly motivated and willing to devote their time and energy to get their external memory aids to function well. The aim of the pilot study was not, however, to evaluate the effectiveness of an external memory aid, but such a study would be of value. 79

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80

Hallengren & Hed 2004. The batteries in the telephones that were tested were not fully charged, which affected the telephones’ performance.

Individuals’ need of assistive devices represents a major cost to society. If products are designed to accommodate several different kinds of needs arising from functional disabilities, it would save money. Furthermore, it has been found that individuals with functional disabilities prefer aids that are not individual, unique solutions. In the present study we noted differences between those who were active in working life and those who were on sick leave or had disability pensions. Those who had jobs tended to have access to a computer in their homes, often thanks to employer-underwitten rent-purchase schemes. They also tended to have the most modern software and access to support. Individuals with the greatest degree of cognitive disability expressed a desire for a personal support function, someone they could turn to for help in adapting a mobile phone so as to make it an effective external memory aid. It may well be that the emphasis in future the provision of assistive technology will rest more on helping people select existing products and support in using them than in devising individual solutions. The three groups that this pilot study worked with expressed essentially the same preferences and requirements, despite different degrees of cognitive disability. However, the consequences of a product’s failure to meet those requirements were more severe, the greater the degree of cognitive disability. The congruence of the groups’ preferences and requirements suggests that it may be possible for studies like the present one, with participation of individuals representing different levels of cognitive ability, may be able to generate a specification of requirements in line with the principles of Design for All. Generally speaking, the model used in this pilot study to elicit and document the needs and requirements of prospective users, with and without cognitive disabilities, worked well. The principal improvement outlined above concerns more systematic contacts between the research team and the participants during the trial period. We are convinced that the findings of this pilot study can be of use to companies that design and/or manufacture products that can be used as external memory aids. It is important that these companies continue to involve users in the design process, in the ways demonstrated in this study. That is to say, to use the personas we have created as a reference point, to involve prospective users in the research and development process — and, to use multi-competent project groups, where each member contributes his/her specialized knowledge — knowledge of the target

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group(s), design, usability and technology/ies. An important lesson from the pilot study is that when we meet the requirements of individuals with cognitive disabilities, we also satisfy the requirements of individuals who do not have such disabilities. One example: the desire to be able to select and delete functions in the mobile phone, i.e., that functions and layout can be personalized to suit the user’s personal needs and intended uses.

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Design för All – Users Pilot study and requirement specifications for an external memory aid

The provision of assistive devices in the future will be more a question of guiding consumers’ choice of products and technical support, rather than prescription of single, personalized devices. Most manufacturers today understand the strategic importance of user-based products and services. Products that are well-adapted to the needs of users are the key to success on the market. The present study analyzes use of, and satisfaction with, external memory aids among individuals with impaired cognitive function and establishes specifications that mobile phones equipped with calendar functions must fullfill if they are to be adequate external memory aids. The study comprises one of three studies in Design for All -- Users, a project carried out in collaboration between the Swedish Handicap Institute and the Swedish Association of Persons with Neurological Disabilities. The overall purpose of the Design for All project is to encourage the manufacture of products that meet the requirements of larger groups of users so hat as many people as possible will be able to use them.

The Swedish Handicap Institute (SHI) is a national resource centre on assistive technology and accessibility for persons with disabilities. SHI works for full participation and equality for persons with disabilities by ensuring access to high-quality and secure assistive technology, an effective provision of assistive devices and an accessible environment. The activities of the Swedish Handicap Institute cover: • testing and support to procurement of assistive devices • research and development • analyses of needs, knowledge and methodology development • training and capacity building • international cooperation • information and communication The Swedish Handicap Institute is run by the Ministry of Health and Social Affairs and the Swedish Association of Local Authorities and Regions (SALAR).

The Swedish Handicap Institute P.O. Box 510, SE-162 15 Vällingby, Sweden Phone +46 8 620 17 00 Fax +46 8 739 21 52 Text phone +46 8 759 66 30 E-mail [email protected] Website www.hi.se Best nr 07360-pdf