The Adventure of a hospitalization by freya ruijs

THE ADVENTURE OF A HOSPITALIZATION DESIGNING A TOOL FOR THE CHILDCARE WORKERS AT EMMA CHILDREN�S HOSPITAL IN AMSTERDAM

BY FRE YA RUIJ S

THE ADVENTURE OF A HOSPITALIZATION

DESIGNING A TOOL FOR THE CHILDCARE WORKERS AT EMMA CHILDREN'S HOSPITAL IN AMSTERDAM by Freya Ruijs 1214918 Design for Interaction Master Thesis Faculty of Industrial Design Engineering Delft University of Technology Supervisory Team: Chair: dr. ir. Pieter Desmet Mentor: dr. ir. Marieke Sonneveld Company Mentor: J.C. Konings-Kramer for Emma Children's Hospital in Amsterdam

THanK You’s

I would like to start this graduation report by thanking the people that helped me shape it into the way it is now. Let me start at the beginning

Iris; Thank you for guiding me to the right people within the AMC. I wouldn’t have been able to start this project without you. Jeannette: I am so glad that there was something in my initial communication that sparked your interest. Thank you for giving me the opportunity to design for and work with such an amazing team at Emma. Pieter & Marieke; you make a good team together! Thank you for diving into this project with me and sharing your insights and experience. I enjoyed it! (Even though you dreamers are giving me headaches!) Renee & Carlijn; the other two of the three musketeers :-). Thank you for, being my partners in (design)crime, all the cups of tea, swapping of books, articles, the sweet cards, texts, reading my report over and over again, guiding me, pushing me, helping me and fighting with me. I seriously wouldn’t know what to do without you :-). Roos-Anne; thank you for being my graduation buddy!! It’s good to have someone who is doing the exact same as you are doing (even though the project is completely different), especially during the last weeks. We did it!! (Time for shopping!!! London trip? :-) ) Mum & Dad; I think it is safe to say that you can add mental coach to your curriculum vitae. Thank you for convincing me that sleep would be a good thing and everything would turn out fine. Ravian; I promise to do something else than work for a chance when I come home and you might even get the internet cable back some time :-). All the childcare workers at Emma; Thank you for working with me during this project. It has been an honour! Your team is amazing. Suzanne & Manissa; Special thanks to you for taking me with you for a week and introducing me to the world of childcare workers fast! I loved it!

Dear Adventurers, 7 Are you ready for an adventure? It is going to be exciting, scary, wonderful and at some point you could get into trouble, but that is how you know it is an adventure! Think about that, and think carefully, before you turn the page. Adventure has a way of creeping up on you, when you least expect it. It will get hold of you, drag you down or cheer you up. You can find adventure in reading a book, going to a far-away land or doing groceries at your local supermarket.

This, is the adventure of a hospitalization. Youâ&#x20AC;&#x2122;d better wear a helmet..

Table of Content Thank youâ&#x20AC;&#x2122;s Table of Contents Part I: Introduction 10 1. Introduction 12

1.1 The situation 12 1.2 Problem definition 12 1.3 Assignment 12 1.4 Involved parties 13

2. Design Process 14

2.1 Analysis 14 2.2 Conceptualization 15 2.3 Realization 15 2.4 Evaluation 15

Part II: Analysis 16 3. The Hospital Experience 18

3.1 The Dutch Care system 18 3.2 Clinical Picture 18 3.3 Surgical Operations 19 3.4 Hospital visits and Emotions 20 3.5 Research into patient experiences 21 3.6 The Emma hospital experience 23

4. The Childcare worker 38

4.1 The Philosophy of the Childcare Workers 38 4.2 The work of the Childcare Workers 38 4.3 Struggles & Opportunities 40 4.4 Design Opportunities 40

5. The Children 42

5.1 The development of children (3-6) 42 5.2 Children and Play 44 5.3 Children and Emotions 47

6. Parents 51 Part III: Vision 56 7. Present and Future situation 58 8. Vision 61

Part IV: Concept Design

Persona’s and Protective Frames

9.1 9.2 9.3

66 66 67

10.

Protective Framework A Personal Experience Personas

The Adventurer’s Kit

10.1 10.2 10.3 10.4 10.5 10.6 10.7 10.8 10.9 10.10 10.11 10.12

77 78 79 80 80 81 81 82 83 84 86 88

The beginning At Home The Stories Hospitalization at Emma Placing the ﬂag The Characters at the hospital Pip- the actor Charlie - the thinker Sophie - the achiever Damian - the dreamer The Adventurer’s Kit and the childcare workers The Adventurer’s Kit and parents

Part V: Realisation

11.

The Adventurer’s Kit at the EKZ

12.

Business Model Canvas

Part VI: Evaluation

13.

User Test at the EKZ

100

14.

Recommendations

102

15.

Personal Evaluation

104

Glossary References Abstract Appendices

Reading instructions

108 112 116 120

This report explains the story of my graduation project, focussing on the final design. Before you start reading, a couple of reading instructions. For the sake of a better reading experience much of the elaborations along the way are left out. If, however, you are interested in specific details, you can find them in the appendices. The hospital world comes with quite some jargon. Some of the words might be new to you and need explaining. Words with an * are explained in the glossary. Boxes, like this one, are used throughout the report to either highlight some specific facts or give a conclusion on the subject.

“Be careful going in search of adventure; it’s ridiculously easy to find.” -William Least Heat-Moon-

Part I: Introduction

1.introduction

This graduation project is executed in service of the childcare workers* at the Emma Children’s Hospital in Amsterdam. The Emma Children’s hospital is one of five Children’s hospitals in the Netherlands and part of the ‘grown-up’ AMC. The Emma Children’s hospital is an academic hospital*, meaning that they perform top referent care* and children are referred to the Emma Children’s hospital because of this specialist care.

1.1 The Situation

When a child (3 months - 12yrs) needs a surgical operation, he will be supported by childcare workers during hospitalization. This childcare worker is responsible for the emotional and psychological well-being of the child and it’s family, during the hospitalization. She will therefore prepare and guide the family before, during and after a surgical operation.

same or decreasing, the department of childcare workers is looking for ways to be able to keep on giving the same level of service to all the families they support. Hence this graduation assignment.

1.2 Problem Definition

With the occupance of just one or two childcare workers per ward, the childcare worker has to divide her attention or select specific children to support.

In an ideal situation, the guidance of the childcare worker would consist of numerous steps like observing the child in his playing behaviour, consulting with both parents and physician, preparing for the surgical operation and guide the processing afterwards.

With every hospitalization being a tense experience, one that can cause (severe) stress or even a trauma experience, this is not a choice the childcare worker wants to make or a decision that is fair towards child and parents.

However, with just one or two childcare workers present at a ward, working through all the different steps is hardly possible. At the Emma Children’s Hospital there are seven wards supported by the Childcare workers. With between 12 and 24 beds per ward and the hospital operating at full capacity most of the time, you can understand that a day almost always is too short for the childcare workers.

Right now, the childcare workers are the only ones responsible for the emotional well-being of the child and it’s close family. When the childcare workers are no longer able to support all the children, they are, as a result, no longer aware of their emotional well-being. Because a hospitalization can be a stressful event, this can create a (health)risk for both child and parent. Resulting in psychological problems after the hospitalization.

Due to time pressure, the childcare worker has to work through most of the steps at once. Preparation is short and there is little or no time to start processing the operation, while still at the hospital. In this situation the childcare workers’ assessment skills and responsiveness are stressed to the max, while she prepares for, and with that steers the experience of, the surgical operation. Right now, the situation at the Emma Children’s hospital is challenging, but manageable. However, with the hospital expanding, but resources staying the

1.3 Assignment

To help the childcare workers to support child and family, the assignment for this graduation project will be: “Design a tool for the childcare worker which will help her support child and family in preparing and processing a surgical operation. This tool will guide the family in the entire process of the surgical operation (from home, to home). It will support them in coping with the situation of hospitalization in a constructive

manner. The tool will turn up the efficiency of the procedure, clearing time for the childcare worker, to step in at crucial moments and/or focus extra on problem cases.”

emphasis is already on surgical operations, this seems to be a good focus. This graduation project will therefore focus on children that are hospitalized for a surgical operation.

1.4 Parties Involved

1.4.3 Child and Family

There are several parties involved in this graduation project. Below an introduction of them all.

1.4.1 Emma Children’s Hospital The Academic Medical Centre (AMC) in Amsterdam is one of eight Academic hospitals in the Netherlands. Being an Academic hospital means that the hospital is linked to a university and that medical students will be educated and trained here. It is common for patients within the AMC to be questioned and studied by medical students. Being an Academic hospital also means that since it’s focus is so much on research and education the knowledge level of the hospital and it’s specialisation level are much higher than within local hospitals; they perform topreferent care. It is because of this specialism that patients are referred to an academic hospital by their physician. (Amc.nl) Within four of the eight Academic hospitals (Utrecht, Rotterdam, Nijmegen & Amsterdam) and in The Hague there are special children’s hospitals. The Emma Children’s Hospital (The Emma) is the children’s hospital within the Academic Medical Centre (AMC).

1.4.2 Childcare workers

As mentioned there are around 10 permanent Childcare workers at the Emma Children’s hospital. The Childcare workers are supported by a number of interns. The Childcare workers support child and family during all kinds of medical procedures (like getting an injection), but put special emphasis on preparing for and guiding during a surgical operation procedure. Different illnesses will result in a different experience of the hospital. To gain insights into all these different illnesses during this graduation project, would be unrealistic. And because the

Within this project, the children are in need of a medical procedure and are therefore hospitalized. Because the experience of a hospitalization is quite different per age category it was decided to focus on one age category for this project. This project will focus on the experience of the hospitalization for three to six year olds. From a childcare workers point of view this is a difficult age category. Between age two and three the approach of the childcare worker will change from preparing and guiding a child through his parents to actively involving him in the preparation process. Above six, children are in primary school and are therefore easier to approach most of the time. They understand more concepts and through their school experience they are accustomed to a ‘teacher’ who will explain certain things. Between three and six, children are actively involved in the preparation. They are aware of the fact that they need a surgical operation, but not yet fully capable of grasping the entire concept. Next to this, most of the products designed to help children and family through a hospitalization focus on verbalization of the probleam areas. Children between three and six are not yet able to do this. Combining this, the age category of three to six seems an interesting and challenging group to focus this graduation project on.

1.4.4 Other staff

Off course the work of the childcare workers does not stand on it’s own. During a hospitalization there is quite some personnel involved (like an anesthesist or physician). The childcare workers work closely together with the nursing staff and the social workers.

Emma Children’s Hospital Statistics Within the Emma Children’s Hospital there are 170 beds divided between the seven wards. Every year around 4700 children are hospitalized at the Emma Children’s Hospital. This comes down to 90 new kids every week. With an average of 8 days per hospitalization, it is sometimes a struggle to find a free bed. Of these 90 new kids, about 50 are in any case supported by the childcare workers. The other 40 are too young or between 12-18 and will only be supported when necessary. (amc.nl)

part I: introduction

2.design process

This graduation project will be exercised according to the basic design cycle (Roozenburg & Eekels). However, using a well-being framework in designing a tangible product is a quite new approach. The project will have to work from a theoretical basis to a practical application. Throughout the entire project both childcare workers and child & family will be involved in the design process. This will lead to insights in the application of theory in practice and steer the design process. The structure of the project will be based upon the Exploring Interaction design cycles. To evaluate the design, (experimental) prototypes will be used to do user testing. The design process of this project will consist of four phases: Analysis, Conceptualization, Realisation and Evaluation. Below a description of the different phases and the steps during these phases.

2.1 Analysis

The analysis set-up is based on the figure on the right. The figure explains the different layers of information that will be worked through during the analysis phase. The setup converges from all relevant data to several conclusions. From the conclusions, the process again will diverge again into multiple ideas.

2.1.1 Starters

The start of the graduation project was a quick dive into the world of the Emma Children’s Hospital in the form of a week’s observation. During this week I joined the childcare workers in the course of their work. Getting acquainted with their world fast. Next to that a basis search into patience experiences in literature has been done to get a feeling for the research that’s done in this field. Most important questions for this start-up are:

• What is a surgical operation procedure? • What is the work of a childcare worker? • What research is done into patient experiences?

2.1.2 Data Gathering

After the initial start, a more focused data gathering can start. During the start, interesting touch points can be localized that will be looked at in more depth during the data gathering. This data gathering will be done by means of a contextmapping research for the childcare workers and generative interviews for parents and children. The data received will be rich and broad, mapping the entire context of the graduation scope. With new data a more indepth literature research can be carried out. Most important questions for this data gathering are:

• What are the talents and troubles of the childcare worker?

• How can the childcare worker be supported in her work?

• How do parents and children experience a hospitalization procedure?

• Can children recognize and verbalize emotions?

2.1.3 Personas* & Infographics*

Both the starting phase and the data gathering phase are the collecting of data. This bulk of data however is large and broad. To make it more usable and lively, personas and infographics will be created. When creating personas & infographics this data is transformed to themes and insights to make the data understandable, but rich. Both personas and infographics are used by designers to create understanding and empathy for the users (Sleeswijk-Visser, 2009). Because of this, personas and infographics are a useful tool in communication. They will be able to help the childcare workers

First observations

Literature research

Data Gathering

Analysis Clustering data

Interaction Vision

(Interaction) Vision

Persona’s

Ideas

Conceptualization

Realisation

Evaluation

Figure 2.1 The Design Process

with communicating their core business, when necessary. That is why they are chosen in this graduation project as the form of communication.

2.1.4 Vision

2.3 Realization

During the realization phase, the concept will be lifted towards product realisation. Product features will be further developed and the product will be placed in it’s context.

The personas and infographics consist of all the information in themes and insights. It explains all the data in a clear manner, but from the insights conclusions need to be drawn to create a basis for designing. This will be done in the form of a vision. The present context and the future context of the guidance of the childcare workers will be described. From the future context an overall vision will be created for the project. The vision and the description of the future context will be the starting point for designing.

2.3.1 Concept Details

2.2 Conceptualization

During the evaluation phase the entire process of the project and the product will be evaluated.

During the conceptualization, the insights of the analysis phase will be turned into design concepts.

2.2.1 Idea Generation

During the Idea Generation as many ideas as possible will be generated. They will be clustered and turned into design ideas.

During the conceptualization phase, the global idea of the concept has been established, now it are the details that need to be developed.

2.3.2 Business model

To put the concept in it’s context, a small business model will be made, indicating the scale of the project and the resources needed for production.

2.4 Evaluation

2.4.1 Prototyping

To evaluate the product and it’s use, a prototype of the product will be made.

2.4.2 User test

With the ideas a few iterations will be done. During the phase of transforming ideas into concepts, I did feedback sessions with fellow students, family and at the Emma.

The goal of the user test is twofold. The purpose of this graduation project is to support the childcare worker at work. I therefore want to know if the product is a valuable tool in their daily routine. Second, I would like to know if child and family feel that the product can empower them during the hospitalization.

2.2.3 Feedback session

2.4.3 Personal Evaluation

2.2.2 Iteration

During the feedback session at The Emma, the childcare workers, who are the experts in this case, give feedback on the concepts. Because of their expertise this feedback is valuable, in a way that it can show the feasibility of the concepts.

Executing a full project on my own like this, has been a first. During the project I encountered some pitfalls, but I can also better point out what my strengths are. A personal evaluation will go through all the elements of the project.

part I: introduction

Part II: Analysis â&#x20AC;&#x153;An adventure is only an inconvenience rightly considered. An inconvenience is only an adventure wrongly considered. â&#x20AC;&#x153; -Gilbert K.Chesterton-

part I: introduction

3. THe HospiTal eXperienCe

In this chapter, the basics of the dutch healtcare system, The Emma Children’s hospital and research into patient experience in the hospital will be introduced.

3.1 Dutch Healthcare system

Within the dutch healthcare system there is a distinction between different levels. You can divide the healthcare system into three levels: direct care, ambulant care and top referent care. The exact definition and boundaries of the three levels can differ. The line between 2nd and 3rd line care is not always clear.

3.1.1 Direct Care

Direct care or ‘first line care’ is the care that is directly available to all people. Most used direct care is the family doctor, but also a dentist would fall into this category.

3.1.2 Ambulant Care

Ambulant care is not directly available to all. You need to be referred to a specific care institutions by your physician. Your physician will in that case refer you to a specialist. Ambulant care can be given at the policlinic or at a specialistic institute (for example the practice of a physiotherapist). Small policlinial operations also fall into this category, since you are not formally hospitalized and out of the hospital within 24 hours.

1st line care -Family Doctor-

3.1.3 Top clinical* / Top referent care

When a specialist decides that you need to be admitted into the hospital, you will receive top clinical care. And it will be a clinical treatment you are receiving. When you are send to a specific academic hospital for their specialism, you will receive top referent care. The Emma Children’s Hospital is part of the Academic Medical Centre in Amsterdam. Children from all over the Netherlands will be referred to the Emma, to receive specialist care. The Emma Children’s Hospital is one of five children’s hospitals in the Netherlands that performs top referent care. (amc.nl)

3.2 Clinical Picture

You can look at healthcare from a caregivers perspective, but also from an illness point of view. All illnesses can be classified into three categories: acute* conditions, elective* conditions and chronical* conditions.

2nd line care -Visiting a Specialist-

3rd line care -Specialist care in an academic hospital-

Figure 3.1 1st, 2nd and 3rd line care

Important Consideration for the Experience

Because the Emma Children’s hospital is ‘3rd line’ care, children who are hospitalized into Emma have already been referred to a specialist by their family doctor, have been examined by a specialist, are sent to the Emma Children’s hospital, there again are examined by a specialist and then are admitted into the hospital. That’s quite a journey before they are even hospitalized into the Emma Children’s hospital.

3.3 Different kind of Operations

To better understand surgical operations and their context, it is necessary to learn some more about surgical operations. Off course there are many different surgical operations, but overall they can be divided into three categories; operations to cure a medical problem, operations to get a diagnosis and operations to make life easier.

3.3.1 Curing a Medical Problem

These are the surgeries that come to mind, when you talk about surgeries. These surgeries again are divided into four categories; Opening, Changing, Implanting and Extracting

Opening

These surgeries open, as the name indicates, organs or body parts that should be open, but are no longer open. Also, these surgeries can be called upon, when a new or extra opening needs to be created (i.e in the case of a stoma or tracheacanule)

Changing

These surgeries closely resemble the opening surgeries, but where the opening surgery only opens, the changing surgeries are also changing the body (i.e a bypass surgery). A changing surgery can be the follow-up surgery, when opening is no longer possible.

Implanting

Where changing surgeries change existing body parts, implanting surgery implants donor or artificial body parts. Some of these surgeries will replace body parts that are no longer functioning properly. Also, a large part of these surgeries

is in preparation of a medical treatment (i.e a portocad, which is placed in patients that will be hospitalized over a period of time and are in need of a IV’s. A portocad is then placed to preserve the veins in the hands. IV’s can be directly linked to the portocad. Also, i.e, the placement of a heart monitor falls in this category)

Extracting

These surgeries extract tissue or body parts from the patients. (i.e the removal of a tumour or the amputation of a body part)

3.3.2 Getting a diagnosis

There’s a special category for surgeries that are needed to get a medical diagnosis. There are two different kinds of diagnosis surgeries; extracting & oscorpic operations.

Extracting

The extracting surgeries will remove a sample of tissue (biopt) to exam and get a diagnosis.

Oscorpic Operations

These operations are minimally invasive surgeries (MIS) that will look at different body parts by means of -oscopic instruments.

3.3.3 Make life Easier

These category of surgeries is called ‘Make life Easier’, because they are not meant to cure a patient. These are the surgeries that will be done when a patient is incurable. There are two types of surgeries in these category; palliative and plastic surgery. Palliative surgery is done mostly to relieve pain for palliative patients. Plastic surgery is done on i.e burn victims; they can not get their own skin back, but plastic surgery can make life easier by replacing it with a new one.

Surgical Operations Curing a medical problem

Getting a diagnosis

Making life easier

Opening (i.e opening airways with a tracheacanule)

Extracting a sample of tissue (biopt)

Palliative Surgery (i.e relieving pain for incurable patients)

Changing (i.e changing digestion route with a stoma)

Oscopic operations (Minimally-Invasive Surgery)

Plastic Surgery (i.e replacing skin for burn victims)

Implanting (i.e implanting a portocad in preparation for IV’s) Extracting (i.e extracting a cancer tumor)

part II: analysis

The conditions of the Children in this project Most of the children at the Emma Children’s Hospital are there for it’s medical specialism. This will mean they receive 3rd line (topreferent) care. As mentioned, this will mean they’ve already had quite a journey, before they even enter the Emma Children’s Hospital. Since the focus is on surgical operations, all children in this project are scheduled for an operation. I did not differentiate on the kind of operation. Research shows (Broeksma, 2011) that the severity of the operation is not leading in the experience; you can come in for a broken leg or a biopt or the removal of a tumor, there will hardly be any difference in the experience. Their are two exceptions to this; emergency operations and cancer patients. The acute patients are excluded from this project, because they move through an entirely different process. Some cancer patients were interviewed, but the surgical operation is such a small part of the entire process that an operation will feel completely different to them. A lot of the children in this project are elective, they will come to the hospital for a onetime operation. Because of it’s medical specialism though, the Emma also has a number of chronological patients

3.4 Hospitals & Emotions

A hospital visit, according to most people you will ask, is synonym for an emotional experience. You can be at the hospital for giving birth or having a tumour removed. It can be a high or a low, but it is will probably never feel ordinary. Why is that? To explain the state of patients in the hospital, the pyramid of Maslow* is used as a basis. The pyramid explains the different layers of human needs. At the base of the pyramid are the more basic needs. The more higher up you get, the less basic the needs are and the less common it is to fulfil them.

Some of the needs, particularly in the two lowest layers are so basic that we don’t even recognize this as a need anymore, we expect it to be there.

Morality, Creativity, Spontaneity Problem solving

Self - actualization

Esteem

Self-esteem, confidence, achievement, respect of others, respect by others

These states have become a normality and the needs have become latent*, sleeping. When entering a hospital, this changes. That which was considered a ‘normality’ is no longer normal. For example, you are no longer in your own environment, there is little personal space, you are no longer in control of your own health or that of a family member and in control of the actions. Basically, the layer of safety needs changes from latent to active. The way in which a patient and his/her family cope with this depends on their personal state of mind and probably the severity of the illness (Conley, 2011). Personnel at Emma (and the rest of the AMC) are prepared for extreme emotional reactions. The childcare & social workers are best trained at this. Emotional reactions are difficult to explain, you can look at them from very different point of views (biological, psychological, philosophical). All of which I am not schooled enough in to embrace or dismiss their view. Emotions might be hard to explain but what you can say is that they are always directed towards someone or something. Emotions result in action tendencies that will give you a way to deal with the situation you are in.

friendship, family, sexual intimacy

Love/Belonging

Safety

Security of body of employment, of resources, of morality, of the family, of health, of property

breathing, food, water, sex, sleep, homeostasis, excretion

Physiological Figure 3.2 The Maslow Pyramid

To better explain the way emotions work, we will look at how an emotion comes to be. According to appraisal theory (Desmet, 2008) there are two components that determine the emotional response; a stimulus and a concern. A stimulus is something that the emotion

Action Tendency

Emotion

The general hospital personnel will focus on the emotions ‘fear’ and ‘anger’ since they are considered the most damaging. Personnel is unfortunately mostly the target the anger is directed towards. Because anger brings an outward reaction, this can cause a danger to the personnel. The Childcare workers will focus on fear, because fear can lead to a trauma experience, which can ‘damage’ the patient.

Appraisal

Concern

the situation is deliberately caused and there’s someone to blame (Silvia, 2011). You will experience sadness when: You experience irrevocable loss and there is no one to blame. Sadness is related more to your personal ‘life’ goals than the other emotions. Sadness is more related to expectations, anger and fear are more the product of the situation (Hill, 2010).

Stimulus

Figure 3.3 Appraisal Model (Desmet, 2008)

is ‘about’. This can be a situation, an object, a person, it is the cause of the emotions. However, this stimulus alone is not enough to ‘create’ an emotional reaction. It has to react with something, the concern, the become an emotion. Concerns can be described as personal values or internal conditions. For example, you might like that it is snowing, because you were looking to build a snowman, but you can also hate that it’s snowing, because your flight has been cancelled. It is the combination of the stimulus and the concerns you have and how you evaluate the combination that will create the emotion. For example you will appraise the snow as bad when your flight was cancelled and will therefore experience anger or frustration. When looking at the pyramid of Maslow, you can say that the concerns for safety and control are the most pressing. Emotions and concerns are personal and therefore hard to predict. You can however classify the situation in which it is more likely for a certain emotion to be felt. You will experience fear when: You experience a situation as novel and unexpected and when this situation is hard to understand and cope with (Silvia, 2011). You will experience anger when: You experience a situation as novel and unexpected & hard to understand and cope with. You feel that

3.5 Research into Patient Experience

Most literature on patient experience comes from the United States. In the Netherlands, the healthcare system has only recently been privatized. Research into patient experience is just now considered important. Whereas in the United States, it has been a commercial system for years. There, a good patient experience makes profit. Next to the United States, Scandinavia also has an interest in patient experience research. Still, most research is done in the US.

3.5.1 Family Centred Care

When looking at research into patient experiences in the hospital, it became clear that, in the medical world in the US, a new trend is emerging. The trend is starting mostly from Neonatal care units. Here, the opinion is that, just saving lives is not enough, the quality of life for infants and their families needs to be considered. Success is no longer acknowledged as just getting infant and family out of the NCU (McGrath, 2011). Hospitals are slowly experimenting with adopting families into the care giving teams. Family-centred care giving acknowledges that the family is central to the care of the child and that if interventions (like an operation) are to have long-lasting effects, the family must be a focus for implementation and evaluation. (Weisseflog, 2011) Research shows that, when asked about hospitalization, all parents talked about involvement and participation in the care of their child (Latour et al, 2011). Increasingly more clinical care and research acknowledges the patients’ interest in participating in medical

part II: analysis

decision making (Weisseflog, 2011). Medical treatment typically involves patients living through compound or even conflicting emotional states. Active patient involvement in treatment decisions may reduce decision conflicts and psychological strain on patients while also improving treatment satisfaction.

An interesting part of his view is that he states that the opinion of a hospital experience (but actually any experience) is only just made afterwards. He says that the overall experience is really a reflection afterwards that adds up all the good and bad parts to an overall opinion.

3.5.3 Healing Environments* When combining patient experience with the hospital environment, healing environments are a new field of interest. Our image of hospitals and hospital lay-outs today are a product of early twentieth century changes in hospitals. At that point in time, it became clear that the behaviour of the doctors and nurses and the interior of the hospital was causing most of the infections that killed a lot of the patients in the hospital, most of the time. As a result of this, the behaviour of the doctors and nurses changed (they started washing their hands and changed clothes after patients) and the hospital was stripped of everything that wasn’t absolutely necessary. The sterile look that we know of hospitals was created. However, with the cleanness, the hospital became a colder and less comforting atmosphere.

In my opinion, the statement he makes by leading his hospital this way, is interesting. The thought that, even though it is a hospital, patients are your customers and they need to leave as happy customers, is good. The fact that people have to be at the hospital does not mean you shouldn’t pay attention to them and turn them into happy customers. However, the Dutch healthcare system does not (yet) seem

Hospitals were no longer seen as a place where you wouldn’t leave, which is off course a huge improvement, but with a new regime against infection came single bedrooms and limited visiting hours by friends and family. Patients were isolated. Hospitals began to put an emphasis on diagnosis and all the diagnosis equipment was the basis hospitals were situated around. This would lead to strange paths that patients had to take

In my opinion, when translating this to this project, it would mean that the role of the parents (caregivers) during the hospitalization of the child needs to be redefined and reconsidered.

3.5.2 Healthcare as Service

In his book ‘If Disney ran your hospital’, (Lee, 2004) describes how he changed his hospital by changing it’s philosophy. Lee runs his hospital with the same values that Disneyland is run.

appropriate for this approach. The Emma performs procedures that are only performed there. They have no ‘competition’ and therefore no need for an approach like described in ‘If Disney Ran your hospital’.

Figure 3.4 An early hospital image

as they made their way through the buildings. Walking through such a strange and frightening environment (while ill) can be a stressful experience. So, where medical treatment was ensuring a recovery for more and more patients, a new problem arises. Patients suffering from stress had difficulty healing. Stating that today, we know enough to prevent infections, we can do without the extreme cleanness-look of some hospitals, Ulrich is one of the main promotors of healing environments. His research has been looking for factors that help healing a patients when hospitalized. These precise factors are difficult to pinpoint, but he states that ‘whose goal is to heal, should do what it can to eliminate stress’. (Sternberg, 2011)

3.6 The Emma Hospital Experience Though operating mostly on it’s own, the Emma is part of the AMC, therefore the seven wards (Grote Kinderen, Kinderchirurgie, Tieners, Intensive Care, Oncologie, Zuigelingen & Dagcentrum) are located throughout the AMC. The wards are not clustered into a children’s hospital, within the hospital, but rather are paired with their grown-up twin (for example the children’s policlinic is next to the ‘grownup’ policlinic). Some of the wards are more connected in specialism and therefore close to each other (in example ‘kinderchirurgie’ & ‘kinder intensive care’) This is necessary for facility and logistic reasons, but not beneficiary for the way the children’s hospital is experienced by patients and their family. The different wards are directed at children and offer an experience aimed more at children, but to get to the

different wards, child and family still need to go through the ‘normal’ hospital.

3.6.1 The Wards, The Staff and Rules Although the wards are different in medical speciality and each have their own staff, the setup is mostly the same.

Service desk

At the entrance of each ward, there is a service desk. This desk is literally an information island. All patient charts are stored here for all the staff to find. The digital patient board can also be found here. On the board you can see which patient is in which bed, which doctor, nurse and childcare worker are assigned to which patient, what time a patient is scheduled for OR and if their are special requirements/conditions (for example not being allowed to eat, before a surgical operation). Anyone visiting a patient will mostly pass by this board, since it can update you in a couple of seconds and make sure you can directly walk to the ‘right’ patient. Most specialists (for example, the surgeon and physician) adapted this as a strategy to always be able to give a personal approach. The service desk is an important part of each ward, it can almost feel as the command centre of the ward.

Bedrooms

Each ward has 1-person, 2-person and 4-person bedrooms. In case of hospitalization you are mostly placed at a 2 or 4-person room. 1-person (and some 2-person rooms) are reserved for patients with a severe condition, patients that are hospitalized for a longer period or very young patients (babies).

Treatment Room

Small treatment procedures and meetings with family and physician are done in the treatment room. These procedures and conversations are private. And to make sure that the family will get their privacy and undivided attention of the physician and staff, a red light will glow at the outside of the room (like an ‘on air’ sign) indicating that the room is not to be entered.

Play Room

The Play Room is the domain of the childcare worker. Next to simply being a play room, the childcare worker will use this to observe patients in their playing behaviour and informally talk to parents to see if there are any special areas of attention. Figure 3.5 The Emma Children’s Hospital styling

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Staff Rooms

Next to public areas there are quite some staff rooms on each ward. Off course the service

Figure 3.6 Playroom at one of the ward of the Emma

desk is only to enter by the staff, but there’s also a medicine room, nursing room, doctor and residents room, changing room for all the staff and a kitchen. Looking at the different rooms in each ward, it can be said that all the necessary rooms for the staff were build first. There is few

Figure 3.7 The big hall of the Academic Medical Centre

extra room for in example a parent/caretakers room.

The Staff

On each ward there are the attending physician, the nursing staff and the childcare worker(s) to attend to the child and family’s well-being. Though it is not formally spelled out, there is an unwritten hierarchy among these staff-members. All staff-members will part for the physician or surgeon. Though no one is explicitly asking them, they know that the physician or surgeon has an extremely precise schedule to maintain. The nursing staff and the childcare workers, work closely together. Still, since the childcare workers are not attending to any physical injuries, but the emotional well-being of the patients and families, they can be overlooked at times. The concern for the physical well-being is higher than the concern for the emotional well-being within the hospital community.

Rules

Next to ‘unwritten’ rules there are also a few written rules for the benefit of the patients. The

most important are:

• If possible, a patient will never receive

•

medical attention in bed. (For example if a patient gets an IV, this is done outside the bed to make sure the bed remains ‘safe’ for the patient.) The hospital is scary enough as it is, if there are not some places where you know you can retreat and be safe, it is likely that you’ll experience a lot more stress. In line with that, the play room is off limits to anyone wearing ‘a white coat’. No doctors or nurses of any kind are allowed into the play room. Allowing the children to have a safe play-zone, free of any doctor’s interference.

3.6.2 Procedures

Next to rules, there are specific procedures for hospitalization at the Emma.

Call for hospitalization

Due to waiting lists at the hospital, most hospitalization is not immediate, but usually during the course of six to seven weeks. Before you are hospitalized, you will receive a ‘call for hospitalization’. About a week before the hospitalization, the hospitalization coordinator will provide you with the exact date and time you are expected at the hospital. Within that week, families will receive a letter (mostly) or call with the exact details.

Registration Procedure

When you’ve had your call for hospitalization and you’ve arrived at the hospital, you’ll be requested to report at the ‘Bureau Opname’, the office where all the patients are registered. You can compare it to the check-in at an airport. Passport, insurance card and AMC ‘ponskaartje’ are required to do this.

Hospitalization

When you’re registered, you will be referred to the ward where you will be hospitalized. Here you will be pointed to your bed (at times when the wards are used at full capacity, you’ll have to wait for your bed). Then the waiting will begin. Most patients are hospitalized in the morning the day before their surgical operation. They arrive at ten, check-in, get to their ward, unpack and during the day are visited by attending physician (or residents), surgeon, nursing staff and childcare worker. The operation itself will then be the next day.

3.6.3 Surgical Operation At Emma Though all different, all surgical operations have similar trajectories. You can define certain ‘touch points’ along the way. Most of them will

be familiar, but can differ slightly per hospital. These are the touch points of the Emma Children’s Hospital. For the completeness all are mentioned below.

You need to go to the hospital

At some point it will become clear that a surgical operation is necessary. This can be a conclusion made by different experts for example from a physician or a specialist. They will refer you to either your local hospital or a specialized hospital. Depending on the severity of the condition of the child and the waiting list of a certain procedure, hospitalization will be between six weeks and a day.

Call for Hospitalization

When referred to the hospital, the care of child and family will be handed over to the hospital. When it is time to be hospitalized, the family will receive a call for hospitalization providing date and time of hospitalization. This is mostly done by letter and/or phone call.

Going to the Hospital

When at the hospital child and family need to get registered. Quite like the check-in procedure of a plane flight. The check-in serves as the central administration of the hospital. It makes sure that all important data of the family are available to the entire hospital, when necessary. It is time-consuming to do, but when done up-front, it is logistically convenient and will make sure that the family will not be disturbed during treatment.

Getting to the ward and your bed

While at the hospital, the ward will serve as your temporary home. At the ward there will be a bed reserved for you.

A day of questions and introductions.

The day before the operation (mostly the day of arrival) is a day full of questions and introductions. The family has to get acquainted with the nursing staff. They will check all medical

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information and give medical attention. Depending on the operation the attending physician, residents and surgeon will come and introduce themselves. Next to the physicians, the anaesthetist (or ‘sleep-doctor’) will always introduce himself before a surgical operation. The childcare worker will also be introduced during the day. She’s the one that will walk through the operation procedure with child and parents.

The last preoperation meal

Prior to an operation, you cannot eat or drink for 12 hours. Therefore most children are allowed to choose their favourite meal for dinner the night prior to the operation.

Sleeping at the hospital

One of the parents is allowed to stay with their child during hospitalization. Next to the Emma Children’s Hospital is the Ronald McDonald house where it is also possible to stay for parents and family.

Applying of sedative ointment

About an hour before the surgical operation a sedative ointment is placed at the hands of the children (‘magic ointment’). It will sedate the skin of the hands, making the placement of the IV for the operation less painful and scary.

Call for operation

operation room.

When the operation room is prepared for the child, the nursing staff will receive a call for operation, indicating that the child needs to get ready and is about to go down to the

Dressing for the operation

To get ready for the operation the child needs to get two identical bracelets with name and number. Next to that he needs to strip to his underwear and wear an operation jacket.

Driving the bed through the hospital

When going to the operation room, the child will be driven in his bed to where it needs to be.

Surgical costumes

Before going to the operation room, the child, parents, nurse and childcare worker will go to the ‘verkoever’ room. Here they will have to wait until the anaesthetist will pick them up. It’s also the place where the child will return after the operation. At the ‘verkoever’ room, both parents are allowed to come with the child. When the child goes to the operation room only one of the parents and the childcare worker will accompany the child. At the ‘verkoever’ room, the parent that will accompany the child and the childcare worker will change into surgical outfits.

Waiting for the Anaesthetist

When parent and childcare worker are changed and settled in the ‘verkoever’ room, the nurse will most likely go back to the ward. The family has to wait for the anaesthetist. He will perform a security procedure and will check the child in, so to say. Together with the anaesthetist, one parent and childcare worker, the child will then go to the operation room.

Going to the Operation Room

Before actually going to the operation room, the child needs to say goodbye to one of it’s parents. He is no longer allowed to accompany the child. The road to the operation room is a complicated route through several corridors to get to the operation room.

Getting to sleep

Within the Operation Room, the anaesthetist performs another security check, while everything is prepared. When ready, the child will get an IV in one of it’s hands through which the sedative will be administered. Small children will be sitting on the knee of their parents while they administer the sedative. When they are asleep they will be placed on the operation table.

The waiting of Mum & Dad

When the child is asleep, the parent and the childcare worker will leave the operation room and head back to the other parent. Parents and childcare worker are only allowed to accompany the child during sedation, they cannot stay afterwards. When the childcare worker has escorted both parents back to familiar territory within the hospital, the waiting starts for the mum & dad. Depending on the complexity and severity of the operation, it can last from one hour up to several hours, before the surgery is completed. Parents get an indication on forehand, but are requested to be ‘on call’; a tricky thing in hospitals, since there are only several areas in which there is access to the mobile network.

Waking at the ‘verkoever room

they are allowed to eat when back from surgery.

Resting

Again, depending on the severity and intensity of the surgery, the child will need to rest and the healing process will be observed. With small procedures, often the child and family can go home, the same day or the next day after the operation. Some operations will need follow-up operations. Very invasive surgery will need therapy and adjusting. So, depending on the illness, the treatment can take several routes.

Back to home

When the treatment is done, the child and family can go home. And as loaded as the starting point of the treatment is, as empty is the ‘back to home’. It is often quick and families are quick to leave.

When the child is back from surgery, it will be brought back to the ‘verkoever’ room. In there it can Follow-up call wake up slowly. When the child starts About a week after the surgery to wake up, the parents are called to come and join (again depending on the severity their child. This way, the parents will (mostly) be there and the impact of the surgery) when the child is fully awake. The child remains at the family will receive a followthe ‘verkoever’ room until it is fully awake and there is up call from the hospital to check no more need for observation. The child will then be if the family is doing right. When there are no driven back in his bed, to the ward. complications and the treatment is finished, then from that moment the care for the child falls back to Back to the ward the family’s physician. Back at the ward, the children will need some more time (several hours, To make it a bit more lively, on the next pages, you depending on the intensity of the will find a scenario of a minor surgical operation at surgery) to ‘wake-up’ again. The the Emma Children’s Hospital. doctor will decide when and what

Important Touchpoint for the Childcare Worker The childcare worker will welcome a family when arrived at Emma.

The childcare worker change into an operation suit together with one of the parents

The childcare worker prepares for the surgical operation during the day.

The childcare worker will help the waiting for the anesthesist.

The childcare worker and a nurse will accompany family and child to the ‘verkoever’. The childcare worker will guide child or parents when they find this difficult.

The childcare worker will guide parent and child to the operation room. Getting to sleep in the operation room is the moment the childcare worker needs to help the child the most.

The childcare worker will make sure the family is okay while they wait. The childcare worker will try to say goodbye to every family. She will also inform parents about change in behaviour of the child that can occur right after the operation.

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Een ziekenhuisopname in het Emma kinderziekenhuis

Een brief vanuit het Amc vertelt wanneer we mogen komen.

het is zover, we gaan onderweg!

het amc! maar waar is nu het kinderziekenhuis?

we gaan op zoek naar het kinderziekenhuis & het bed waar ik kom te liggen.

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maar eerst.....

inchecken!!

bij de inschrijfbalie

nu nog mijn bed vinden

dan via het voetenplein omhoog met de lift

..alleen mijn bed is nog niet klaar, dus moet ik even wachten.

dit is de afdeling waar ik ga slapen...

gelukkig kan ik spelen in de speelkamer.

papa is er ook.

Dit is vanaf nu mijn bed. hier ga ik slapen.

als ik in mijn bed lig, komen er veel mensen langs: de dokter, de slaapdokter, de chirurg, de verpleging & de pedagogisch medewerker.

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de pedagogisch medewerker laat met een fotoboek zien hoe een operatie gaat. ik mag zelfs alle doktersspullen bekijken!

nog een keer lekker eten voor de operatie, daarna mag ik pas na de operatie weer eten & drinken.

de volgende ochtend komt de verpleging de toverzalf op m'n hand smeren. allebei de handen, zodat de slaapdokter kan kiezen.

ik kan nog even spelen in de speelkamer.

dan komt de verpleging me halen.

ik moet een gek jasje aan en 2 armbandjes om.

dan gaan we met het bed naar de lift. we krijgen een speciale lift, alleen voor ons.

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dan gaan we naar de giraffekamer. hier kom ik ook weer terug na de operatie.

eerst moeten de pedagogisch medewerker en mama een operatiepak aan. Ik wil graag dat mama mee gaat. papa niet, die gaat niet mee naar de operatiekamer.

we wachten hier op de slaapdokter. ik vertel samen met mama & papa over de vakantie.

de slaapdokter komt ons halen. vanaf nu gaat papa niet meer mee.

de operatiekamer!

de toverzalf mag van mijn handen af.

als ik uit mijn bed, bij mama op schoot zit, stelt de dokter me een aantal vragen.

ik krijg een lampje om mijn vinger...

... en een infuus voor de slaapmelk

als ik met de pmer en mama een mooie droom aan het bedenken ben, val ik in slaap.

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de pmer neemt mama mee naar papa

mama & papa moeten nu wachten tot de operatie klaar is. dan worden ze gebeld door de verpleging dat de operatie klaar is.

als ik weer wakker word zijn papa & mama al bij me. en ik ben terug in de giraffekamer.

ik voel me nog een beetje slaperig, maar wat drinken maakt het al een stuk beter.

ik ben alweer snel uit bed & aangekleed.

aan het einde van de dag ben ik weer aan het spelen in de speelkamer.

de dokter zegt dat ik naar huis mag.

nog een keer zwaaien naar het ziekenhuis, daaaaaaaaaaag!! wij gaan weer naar huis.

ik pak mijn koffer in & we gaan!

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4. the childcare worker

This chapter explains all about the childcare worker. The foremost goal of this project is to give the childcare worker a tool in her work. It is therefore that a lot of emphasis is put upon the work of the childcare workers, their philosophy and methods.

4.1 The Philosophy of the Childcare Workers

The philosophy of the childcare workers is directed towards the prevention of trauma experiences during hospitalization at Emma. Their focus in this is on information management. This philosophy is that trauma experiences arise from extreme reactions to unexpected situations. They will therefore walk patients through all steps of a surgical operation procedure.

Looking back at the definition of the different emotions, we can see that both fear and anger arise from an unknown situation. Putting emphasis on information management to prevent a trauma experience is therefore not a strange strategy. If patients are aware of every step in the process, they will not be surprised or get uncertain due to the procedure. However, this is a quite rational approach for an emotional subject. When before or at the hospital you can easily be overwhelmed by all the information presented at a time. Next to that a hospitalization is never ‘straightforward’ and you are dealing with a lot of different staff that have to work really closely together, to create a seamless hospitalization. There will always be certain unexpected situations in which the childcare worker has to support the family and child.

4.2 The Work of the Childcare Workers When a child and family undergo a surgical operation, it can be an exciting experience. It is the job of the Childcare worker to look after the emotional well-being of the patient and family. Her main task is to prevent trauma experiences for child and family. Every child that is hospitalized between the age of 3 months and 12yrs will automatically be guided by a childcare

worker. Between the age of 12 and 18, children can still be guided by the childcare worker, but this will only be on call (i.e when a child has had a trauma experience, when parents are not able to guide the treatment, in case of a rare condition or treatment) They way she does this is threefold:

4.2.1 Prepare

According to the childcare workers, the biggest fears arise of the unknown, when patient and family are not aware of all procedures and steps of the surgical operation (for example, the security check in the operation room where the child is asked to tell his full name, date of birth and the reason that he’s in there, can result in a lack of trust, if child and parent are not prepared for this). The childcare worker therefore walks through all the steps of the surgical operation and explains all procedures in detail. While she prepares for the operation she probes for emotional reactions to certain parts of the treatment.

4.2.2 Accompany & comfort

Within the hospital, the childcare workers most closely resemble the patients. They work at the hospital, but look like ‘normal’ people and will not perform any medical procedures. They are therefore easy to be trusted and will for many patients and family be the first one to go to with a question. They accompany child and parent to the operation room and will there support the process of sedation. At times their presence there is enough and parents will do most of the procedure themselves, but mostly they will provide child and parent comfort, and guide the sedation, making sure the child will go comfortable under sedation.

4.2.3 Empower

Many procedures will not end after hospitalization (i.e when a child suffers from constipation, the ‘flushing’ of the intestines continues at home). The childcare workers will

Figure 4.1 Childcare worker tools

make sure that child and family have a plan to perform these procedures, have practised it a couple of times at the hospital and will not leave the hospital before they are accustomed to any procedure that might be necessary to perform at home.

4.2.4 Methods

There are several methods the childcare workers use. The methods themselves are quite abstract, but will be adjusted to every family.

Play

The starting point for the childcare worker is playing. Playing with the children will create a bond between child and childcare worker and will give the childcare worker information on the behaviour of the child. Playing with for example a doctorâ&#x20AC;&#x2122;s kit will expose certain fears (when leaving, for example, a syringe out of the play)

See & Feel

To get familiar with all the tools and props used during a procedure, children and their family can play with and feel all the things used during the operation. Some ideas related to certain props can be clarified (for example a common misconception is that the needle used to get an IV, will stay in the hand after puncturing).

Empowering

When preparing for example, a procedure at home, the childcare workers use repetition,

structure and rewards as ways to get a child accustomed to certain procedures. Parents or caretakers are guided in practising the medical treatments. The childcare worker will empower the parents and make sure that the parents will not have to leave the hospital, before they are confident in performing the medical treatment for themselves.

Tools

Overall, looking at the different methods and tools of the childcare worker, it can be concluded that the products the childcare worker uses are tools or facilitators to start the conversation between child and childcare worker. She uses a picturebook to explain the procedure, a toolbox with medical equipment to take away fears and, for teenagers, the emotion game, to start talking about sensitive subjects in a playful manner. The only exception are the cancer beads. Children with cancer are rewarded after each procedure with a bead representing that procedure. When finished with their medical treatment, the children will have created a chain of beads representing their journey in the hospital.

4.2.5 Classify the Children

Although preparation is always customised to the family and child, there are two main charactergroups that the childcare worker will differentiate between. The two charactergroups are called blunting and monitoring.

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Blunting* Children that are blunting, are evasive when it comes to the medical treatment. They avoid details and rather not know exactly what’s going to happen. Children that are blunting mostly need distraction to cope with medical procedures. Monitoring*

Children that are monitoring are the exact opposite of children that are blunting, they need to know every step of the procedure and need to be told what is happening all the time. Children that are monitoring are in need of control and are in need of structural methods (i.e counting down 1,2,3..) Throughout the procedure.

4.3 Struggles and Opportunities Within the work of the childcare workers a few problem areas can be defined. They are explained below.

4.3.1 Time

Time is the biggest enemy of the childcare workers. The nature of their work is timeconsuming and working with people is never predictable. There therefore never seems to be enough time in a day.

Real good assessment skills

Because time is short and valuable, the childcare workers are asked to assess the patient and his family in a very short period of time. This is both a struggle and a strength of the childcare workers. They all are naturally good at assessing the situation and their skill grows with experience. However, it is quite easy to overlook something with so little time.

It takes time

Most of the procedures of the childcare workers are time-consuming. It takes time to prepare a patient for a surgical operation. Time to be thorough and time for the information to sink in. Some of the effects of a hospitalization and surgical operation will not be clear at first sight. They need time to sink in, before it becomes clear whether or not help is needed for the family. The childcare worker can try to inform the patient and family the best they can, but there is no time for the childcare workers to guide the patient and family while they are at home.

The machine of the Hospital

The fact that the childcare workers work with

people and the fact that their reactions are unpredictable and human nature is not meant to ‘fit’ in a procedure, rubs against the machine of the hospital. It is easy to forget that a hospital is also a business, because their service is such a basic need. But a hospital is also a company and with it comes a certain machine-like procedure. The work of the childcare worker, because it is so linked to the people that are hospitalized is not easy to fit into this system.

How do we choose?

As mentioned before, the childcare workers are stretched in their work capacity and at times are no longer able to guide all the 3-12 year olds when they enter a hospital. During the research, it became clear that, making a decision on which patient to guide and which not, is hard on the childcare workers. Especially with new patients, there is so little to go on when forced to make a decision. Choosing one patient over the other, does not seem fair, but is, at times necessary.

4.3.2 Always Communicating

Most of the work of the childcare worker is centred around ‘communicating’. Communicating the procedures to both child and parents, communicating with the child and family about their feelings. Their work revolves around communicating.

Miscommunication

One of the reasons that the focus of 3-6 yrs old has been chosen for this graduation assignment is that they are the most difficult to communicate with, when it comes to their feelings. Especially the younger children are not yet able to express their emotions. Luckily their parents are usually quite skilled at reading their reactions, but in a new situation like a hospitalization, the fact that children between 3-6 yrs old are not good at expressing themselves can cause some miscommunication. The experience of the childcare workers is unmissable at these situations.

4.4 Design Opportunities

In all the information on the childcare workers, there are three main themes, that are important for the designing:

• The guidance of the childcare worker has to • •

be wider than the actual hospitalization, but still efficient. The childcare worker has to be able to give the child a way to communicate how they feel A childcare worker has to be able to communicate what they do in their work.

CLOSET OF CHILDCARE WORKERS TOOLS

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5. THE CHILDREN

In this chapter an outline of the children involved in the operations is given. A small summary of the development of children between three and six is given. Also, how children use ‘play’ in their development is explained. Finally, the outcome of a small study on the communication of emotions among children at the Emma is explained.

5.1 The Development of Children between the age of 3 and 6 years old

The years between three and six (or the preschool years, as they are sometimes called) are important years in the development of the child. They are clustered together as a group quite often, but the difference in developmental level between a 3 year old and a 6 year old is quite big. Below an overview of the most important developments. They are clustered per age, and it is important to state that the developments usually occur somewhere around this age, but that the exact time differs per child. (Gielen, Design for Children’s Play and Emotion)

COGNITIVE DEVELOPMENT

more than two or three. At three, the world still revolves around the child, making it hard to understand, for example, that you need to take turns on the swing. The three year old does not want to wait for attention.

4 years old

At four, children start to understand that they are their own person and have their own identity. They will start to experiment with that and will act accordingly (I want.., I need...,). The four year old is gaining control of his own person, therefore it will be hard on him when in the hospital this newfound independence is limited again. At four, children understand that there is a ‘tomorrow’, but they do not yet understand cause and effect. A four year old will be able to tell long stories, but will quite easily confuse fact and fiction.

5 years old The cognitive development of the pre-school years resolves around the shift from an egocentric perspective to a much wider view of the world. Children will shift away from using themselves as the only point of reference. They will also, during this period, became aware of their own ‘self’ and start experiment with this.

3 years old

After a period of growth, the 3 year old is steady and confident again. He’s still learning, but much more calm and at ease than his 2 year old self. At three, children start to learn the difference between past and present. They also will be aware of the fact that they are ‘boy’ or ‘girl’ and that there is a difference between the two. A 3 year old can count up to ten, but will have no real understanding of quantity

Five year-olds are, most of the time, confident with their own abilities. Children at five have good self-control and feel they know how to handle with situations. They, from this secure and confident base, will start to look for new challenges. The home is no longer enough to satisfy their curiosity, so they will start to explore and flourish at school. At five, children are no longer dependent on their parents and will require far less adult attention than a three or four year-old. They will also start to learn that ‘the time’ has a relationship to the routines during the day.

6 years old

At six, children will experience an upheaval in physical energy. They are energized most of the time and therefore easily distracted. Their minds are very active and they will switch between activities and topics easily. Between the age of five and seven, there is again a change in the way children think and feel. Children start to

understand that ideas or concepts can be part of a bigger system and answers are no longer black and white. They will understand that there are multiple answers to a question. As a result, the six year old can be indecisive and insecure, not knowing what to do. He has the understanding that multiple answers are possible, but has not yet grasped the understanding of the implications of all the answers, which will make him insecure. This can result in moodswings and emotional reactions. But most of the time, six year olds are

EMOTIONAL DEVELOPMENT easily distracted by encouraging them to explore and learn. The cognitive developments of the pre-school years come with periods of emotional unsteadiness and insecurities. Emotional behaviour will change and be unpredictable during the entire period. This are the last waves of toddler puberty that can be felt.

3 years old

A three year old is, after the toddler puberty at two, much more emotionally steady. He is no longer insecure of his abilities and feels confident. He is therefore much more at ease. This will result in very friendly and social behaviour most of the time. At three, children are eager to please everyone. A three year old will show real affection towards his family (parents, siblings, grandparents) and pets. He is comfortable around them and used to playing with them or on his own. At three, however, he starts to experiment with playing with other peers. A three year old will like playing and sometimes even sharing with peers, but not too many at once and only when he feels secure.

the larger group of children at school. The five year old no longer has the need for so much adult attention as a 3 or 4 year old. A five year old can be extremely proud of his own achievements. He will thrive even more when encouraged and praised by an adult (parent or teacher). A five year old has developed a sense of sensibility but will need encouragement in order to keep on progressing in it’s emotional development. At five, children are still likely to have the urge to cheat to win, but with their newly learned sensibility, they will have an understanding of ‘not fair’.

6 years old

A six year old will enter another period of emotional upheaval. Between the age of five and seven there is a major change in the way children think and feel. At six it is therefore at times difficult to maintain balance in emotional behaviour. This can result in moodswings, periods of frenzied activity and nightmares for the six year old. Because of the increased mental abilities of the six year old, he will be able to see that there are many sides to a question. This can make him hesitant, indecisive and frightened. When it is causing stress, it can, again, result in nightmares. In his moodswings, the six year old is capable of very strong verbal and physical temper, but he can also be very caring and considerate.

SOCIAL DEVELOPMENT The development on social level is all about moving from a family situation to a wider perspective of daycare, school and friends. The shift towards this newfound social circles brings new challenges and struggles for all children. The social development during this period is focused on coping with this situations.

4 years old

At four, children will show up and down emotional patterns. A new wave of cognitive, physical, emotional and social development will cause confusion for them. This can result in very quick moodswings. In comparison to the temper tantrums of the two year old, however, they are relatively mild. The four year old will show his emotional unsteadiness with cheekiness and impertinence. Experimenting with his own ‘I’, he can be very self-willed and strong-headed which can lead to conflict. A four year old likes to do it his way.

5 years old

At five, children have achieved a measure of independence which will help them cope with

3 years old

At three, children start to move out of the family circle and will be looking for a playgroup with peers. A three year old is generally very cooperative and will like to help adults (parents, daycare worker) with all kinds of activities. He will also start to enjoy games with other children and share, but still needs to be in a really small group. While playing with other peers, language is becoming an increasingly important tool. When playing with peers, the vocabulary of a three year old will get a real boost.

part II: analysis

4 years old

At four, children like to be around other children, but their actions will alternate between teamplay and conflict. They do however understand that they have to use words rather than start fighting. A four year old will take turns and play games and understand the need for rules, but may very well cheat to get what he wants. When friends are hurt, he will help and symphatize.

5 years old

A five year old is seeking for new challenges and will look for them in a social way. At five, children are ready to mix with a wider group and choose friends among them. A five year old will be very proud of his achievements and the things he owns. While creating new friends, a five year old will also be protective towards younger children and pets and will genually be concerned and upset when they are hurt.

6 years old

Socially, six is a difficult time. Friendships form and dissolve quickly. Children love parties and social functions at this age, but it can also be a traumatic time (there’s nothing worse than ‘you are not coming to my party’). Children love attention and seek acceptance from teachers and parents at six, but find it hard to accept when corrected.

5.2 Children and Play Almost all activities of children are classified as ‘play’. It’s, what most people, would name as an important part of what defines children, their playing. However, a clear definition of what ‘play’ is does not exist. There are quite some different views on ‘play’. Still, there are a few guidelines that define the area of play (Gielen, 2008): Play is: • a spontaneous activity of everything that lives and moves, but especially of young children • especially focused on the process of the activity and not on achieving external results • always an activity with something or someone • a repetition, variation or combination of behavioural patterns (motorial and mental) that are available to the individual, on one’s own discretion and will • the creation of a pseudo-reality (the play

frame), that is marked by the use of certain signals • an activity that manifests itself in various ways and levels during human development • an activity that occurs under certain circumstances and conditions. • an activity that meets certain wishes or needs in the area of cognitive, motorial, sensorial and emotional capacities. • an activity that fullfills functions in the area of relaxing, emotional processing and practicing. The views on play are not different in the way that they contradict eachother, but in the way that they vary between the viewpoint from which they look at play. All viewpoints provide interesting insights for designing for children.

5.2.1 The border between play and non-play ACTIVITIES

As mentioned above, play is always defined as an activity. But not all activities will classify as play. Within the domain of activities, play activities are defined as ‘being undertaken for the sake of the activity itself and not with achieving goals in mind.’ Of a play activity, the activity and actions itself will be the focus. Only then the activity will be a play activity (Gielen, 2008) PLAY

5.2.2 Conditions of Play

For the play activity to start, certain conditions need to be met. Children cannot play in every situation, not every situation is suitable for play. Some conditions that are important for play and relevant to the hospital environment, are:

• Firstly, when a child plays, he/she needs

•

to feel safe and at ease. A child will, in a new situation, first assess the situation, before starting to play. Exploration is the beginning of play. Without the possibility of exploring (the situation) there is no play possible.

The two conditions above are essential, and have to be part of the design. Stimulating interaction between children (in the same age group) and using toys (or other materials) that are interesting and fit for the developmental stage of the child are the start.

5.2.3 Types of Play

Within all play activities, you can define

different types of play. The two most known classifications of play PLAY are made by Buhler and Piaget. They both made classifications of play based upon the age of children. They defined which type of play appears dominantly at what age. For the targetgroup of three to six years old, the following types of play are important:

• Functional play is motorial and sensorial

•

activity. This play is dominant in the first two years of the child and can be done with or without objects (holding fingers or putting toe in mouth) The dominant play-type from the second to the fifth year is symbolic play. Play that revolves around as-if play with stories and roles. From four to seven, construction play becomes important. Construction play is, as the name suggests, the play in which children build and create meaning from different elements (like tinkering, building with Lego or Duplo and cutting paper)

5.2.4 Why play?

Most important is probably the question, why do we need to play? What is it that makes play good for us? And makes us feel good when playing? Among researchers, there’s a division of three main functions of play. These are: • Exercise; while playing, children practice their skills and acquire knowledge. • Digestion: Through play, children can learn

how to deal with their emotions. In play behaviour is allowed that is not ‘allowed’ in the real world. • Relaxation: Play gives children an opportunity to forget their surroundings. During play, children can influence their own emotional state. According to Laura Seargeant Richardson we can even go as far as saying that ‘play’ and the abilities learned from it are our ‘fun’damental superpowers and greatest natural resource, the physical and mental skills, that we develop to adapt and thrive in a complex world.

5.2.5 Conclusions for Design

One of the elements of play is relaxing and emotional processing. While hospitalized, this seems as an important activity to come to terms with what is happening. Therefore, play, should be an important part of the design. For play to start, a safe environment is necessary. Creating a safe environment is therefore important while designing. Through play, children can also learn how to deal with their emotions and try behaviour that is not ‘allowed’ in the real world. They can use this to form their image of what is happening. Types of play that have a big role for children between three and six are functional and symbolic play. A combination of the two types of play will make the design both familiar and intriguing.

Figure 5.1 Exploring Play behaviour

part II: analysis

ARS

Figure 5.2 Toys per agegroup

A YE

5.3 Children and Emotions

A small study has been conducted, to get insights into how 3-6 year olds experience emotions. This has been done by adapting an interview exercise of Gielen, 2010 to the situation. The exercise consists of 12 situations (4 situations that are considered to be linked to a specific emotion, 4 situations that are ambiguous and 4 situations that would best suit one of the different play-characters). In these situations, the people are faceless. It is up to the children to give them back their facial expression with the stickers provided. Main research questions were:

• • • • •

Are the children able to recognize emotions from facial expressions? Are the children able to link these emotions (in the form of facial expression stickers) to certain situations? Are the children able to verbalize which emotion the face expresses? And if not, how do they communicate? Are the children able to verbalize why they placed the face with a certain situation?

Below are the results of the study:

5.3.1 Verbalize Emotions

Between the age of 3 and 6 years old, there is quite a big difference in verbalizing emotions. The 3 year olds hardly know any words linked to the emotions. They are more likely to know the activities related to an emotion (‘crying’ instead of ‘sad’ or ‘smiling’ instead of ‘happy’). But even this is often hard to

verbalize. Whereas a 5 year old will know most of the activities related to the emotions. Verbalizing the emotions remains hard. There is however, a noticeable change in the richness of the verbal explanation; 5year olds have a bigger palette of words from which they can choose.

5.3.2 Recognize Emotions

The children weren’t able to verbalize most of the emotions. Only ‘anger’ was verbalized like ‘anger’, the others by their activities or facial features. The children were however able to understand and recognize most of the expressions. All children were able to mimic the facial expressions in such a way that showed their understanding. Suggesting they understood the facial expressions and therefore the emotions perfectly. The emotions that were clearly understood were happiness (in different intensities), anger, sadness and fear (also in different intensities). Faces that represented emotions like ‘contempt’, ‘disgust’ were not easily recognized. This can be due to the simple facial representation or to the fact that children do not yet know this emotions.

5.3.3 Communicate Emotions

Since the children knew which emotion or feeling the face should portray, but they weren’t able to verbalize it, they used some other methods of communicating what was depicted at the situations. As mentioned above, by mimicking the expressions and using body language, children could show what emotions were portrayed. The ‘scary face’ was described like this the most. The 5 year olds would describe the situation in either activities or properties (i.e ‘crying’ & ‘ laughing’ or ‘eyes closed’) When it was either too difficult to explain or not recognized, the children would simply hold up the sticker or situation, so the researcher could have a look for herself.

Figure 5.3 Participant stickering

part II: analysis

Figure 5.4 Participant stickering

5.3.4 Placing of the stickers

Next to mimicking the emotions, it was also clear that the children understood the faces and the emotions by their placement on the situations. Faces were placed, mostly, where you would expect them (a scared face on a boy with bugs in it’s hair and a happy face at a birthday party). This also indicated that the facial expressions and the emotions were understood. Within the stickering behaviour were some striking differences. As would be expected, the stickering approach (i.e careful, fast, curious) per child, was different. Some wanted to be very precise, others simply enjoyed the act of stickering. The biggest difference however, was the attitude towards the exercise. 3 and 4 year olds pretty much made their own rules. They placed faces on the empty faces, but when they thought it necessary, they also placed faces on some of the other figures or situations. It felt at times, to the researcher, that they treated it as a game or storytelling. They enjoyed the act of stickering and kept on going until the sheet of stickers was empty. Most of the 5 year olds treated it as an exercise, where they had to fill in all the missing faces and they would only use the faces they seemed necessary.

5.3.5 Faces to certain situations

When looking at the different interviews and the faces placed at the situations, it can be said that they are, overall, strikingly similar. In general, there is little difference between the stickering of certain faces to certain situations of a 3 year old and a 5 year old. The verbalization of their reasons why are, however. Similar to verbalization of emotions, 3 year olds mostly can’t explain why they placed the face, where they placed it, at all. 5 year olds are better at explaining why they placed the sticker there then naming the emotion. At some

of the occasions, the 5 year olds would answer that they ‘don’t know’ why they placed the sticker there. This is an interesting reply, since they know why they placed the sticker there, after all, they recognized the situation and what is happening. They just don’t know how to verbalize it. The explanations given for certain faces at certain situations gave some insights in how the different situations were percepted. Some of the 5 year olds would find it strange when asked why they placed their stickers where they placed them. (a common phenomenon, see ‘also interesting’). When they explained the situation they would, again, use a lot of activities, mostly related to a specific place (‘sleeping’ at ‘home’ or ‘biking outside’)

5.3.6 Also Interesting

When asking one of the 3 year olds if he wouldn’t fall off a seesaw if he closed his eyes on it (see figure 5.5), he looked at me like I had gone completely insane. He had thought a seesaw to be so dull, that he could sit on it with his eyes closed. The fact that I didn’t know this, he found strange. This is a perfect example of the phenomenon that small children are not yet aware of the fact that if they like or dislike something, that it doesn’t necessary means other people do too. For example, when a small child likes tomato soup, they will automatically assume you like this too. This explains, why, in a situation that the child thinks is perfectly normal or understandable, he will find it strange if you don’t respond the way he expects. In general, there were two different sticker approaches; some children would start with the stickers and work through the sheet of stickers. Constantly looking for the situation that matched their sticker. Others did it the other way round, they looked at the situations and choose the sticker that represented the situation best. When starting with the situations, the children would always start

with placing all the smiling faces. Indicating a, very logical, preference for happy situations. During the interviews, one of the parents was always present, they do not wish to leave their hospitalized child alone for even a second. Most of the parents let their children stumble and struggle with explaining what was on the stickers and why they placed them on a specific situation, indicating that they were aware of the fact, that their children are not yet able to verbalize this. Some of the parents however, obviously struggled with this themselves, they tried to ‘help’ their children, leaving almost no room for the children themselves to communicate. One or two of the parents would even get frustrated with the exercise and their child.

5.3.7 In Summary

All the children, regardless of their age, were able to understand facial expressions of the emotions of happiness, anger, fear and sadness. Next to that the children were able to understand different situations given in the form of drawings. They could add faces to the situations so that they were completed. The placement of the faces seemed all logical (indicating that the situation was understood), but the children all struggled with the verbalization of the situations, the emotions that were portrayed and why a situation like this would arouse this kind of emotion. When the situations were explained, this was done in the form of activities (i.e ‘crying’ or ‘laughing’). When the children were not able to verbalize, they mostly used mimicking the expressions as a way to communicate what was happening in that particular situation. Striking was the difference between attitudes of 3-4 year olds and 5-6 years olds, towards the exercise. 3-4 year olds treated it as a game, something fun, where they applied there own rules. 5-6 year olds approached it more as an exercise, where the right answer needed to be given.

5.3.8 Concluding

For designing this means, most importantly, that children between the age of 3 and 6 years old are not able, or struggle with verbalizing what they are feeling and why. Since speech is one of the main ways of communicating between people (especially when not familiar with each other), this proposes a challenge. Children, parents and the childcare worker are, if you can call it that way, in need of a ‘new language’ in which they can all communicate about emotions. The research itself gave some touch points for doing so; it seemed that all children were perfectly able and comfortable in understanding facial expressions, body language and visual representations of situations. The research itself also showed that there are limitations to the form of the design, the research showed that the 5-6 year olds were perceiving the stickering exercise at times, as an exercise in the sense of homework. Although not actually proven, it seemed like they were looking for the right answer, instead of their answer. They did not feel free enough to make the material their own. Something that must be avoided in the final design, since the objective is to let children experience and deal with their own emotions, whatever it is what they are feeling. The 3-4 year olds, did not seem to have these restrictions. The research indicates that because of this communication barrier that children and parents (and childcare worker) are having, they miscommunicate and are no longer equals in conversation. To say it straight, parents easily overrule the conversation and their children let them, because they have no own way to communicate.

Figure 5.5 combinations of situations and faces

part II: analysis

5.3.9 Schemas

In literature, schemas are described as used to understand young children’s emotional experience before they are able to express this themselves. Schemas are defined as a pattern of repeatable actions that give the parent (or caregiver) insights into the child’s emotional experience (Arnold, 2010) Schemas are used to handle a certain situation. For example, the schema ‘Containing’ (actively putting materials or oneself inside an object capable of containing them or objects) is used at the Emma to actively ‘put away’ scary experiences or things. Containing the experience like this, gives the child a way to process and close the experience. Turning it around, you can say that when in a certain situation, you can expect that a certain schema will be used. The interaction of the schema can then be used in the design.

Schemas that can be interesting for and are connected with a new situation like the hospital are: connecting & disconnecting, Enveloping & containing, Transporting, Positioning and Transformation (Arnold, 2010)

5.3.10 Transitional Objects

All the schemas are closely linked to the emotional experience of children. But some more than others. ‘Transporting’ is intertwined with the theory of Transitional Objects [ ]. Transitional objects are traditionally classified as object that symbolizes the mother in her absence, but can also be seen as transporting a piece of familiarity and security to a new situation. Transitional objects are, accordingly, also classified as ‘a defence against anxiety’ (Arnold, 2010)

Figure 5.6 participant stickering

Design opportunities

From all the different insights, interesting opportunities for designing arise. Below a summary of what are the most interesting opportunities or struggles.

Difference between 3 and 6

While researching the development of the children between 3 and 6 years old, it became clear that there is quite a gap in the development between the two. If the product has to serve the entire group of 3 to 6 years old, there have to be some layers to adjust to the level difference of all children between 3 and 6.

Communication

An important part of a product for this agegroup is about communication. Communication between child & parent and child & staff. Especially since communicating their emotional state is difficult to young children.

Use of Play

As mentioned in the chapter on play, play is a tool for children to deal with the situation. Evident to this, the basis of the product needs to be ‘play’. Next to that play is natural and easy accesible to most children. In a new situation it is important to make use of something familiar.

The Journey

Derived from the theory of transitional objects, I like the idea of a product experiencing the journey of a hospitalization with you. Incorporating the journey in a product design is therefore something I strive for.

6. THE PARENTS (CAREGIVERS) In this chapter will be discussed how parents experience a hospitalization and what is important to them during this hospitalization. From their experiences an emotional impact-line was created to show how the different elements of a hospitalization effect parents.

6.2 About hospitalization “Kijk je dan naar het tijdsbestek waar je dan over praat. Krijg je vrijdag gesprek gehad met de artsen, zondag opname, maandag wachten en foto’s en dinsdag operatie.”

When hospitalized with your child there are several aspects that will either be a new experience or different than for example in your local hospital. Most people do not have a operation procedure in their frame of reference and will form their expectation from what they have read about or have seen on TV.

6.2.1 Hospitalization

The time-span before the hospitalization is unpredictable and closely linked to the severity of the disease. At times it can be that due to a waitinglist, it can take up to six weeks before child and parent are hospitalized. Or, it can be the other way round. One of the parents mentioned that they came into the hospital at sundaynight and at noon on monday they knew it was probably cancer and at one, their child was operated. The unpredictability of the diseases and procedures makes it hard to prepare.

6.2.2 Medical Personnel

Parents put a lot of emphasis on the knowledge level of the hospital. When they have the feeling that the personnel is skilled they feel safer. The fact that the AMC is an academic hospital helps create this environment of ‘knowledge’ where parents feel safe. One of the parents even

mentioned that the Emma is ‘one of the best places in Europe, if not the best, to be for a children’s cancer treatment. So I don’t want to be anywhere else’. With this also comes the fact that parents accept that for instance a surgeon will hardly talk to them. He is there ‘to do his thing’ and it comes as no surprise to them that talking to them is not part of ‘doing his thing’

6.2.3 Treatment Plan

A treatment plan is always part of the hospitalization, but it is especially helpful in a long hospitalization (for example with cancer) or when the hospitalization starts with a biopt. A treatment plan gives parents a way to take the procedure in steps and more security in what to expect.

6.3 Realization “ Het is meer de shock van de eerste 3 dagen, van jezus wat overkomt ons, je kind heeft kanker... en dan zit je bij wijze van spreken in een hoekje te janken..” 6.3.1 Realization

Realization takes time. It takes time to sink in that your child has a certain disease. The parents that were at the hospital, because their child has cancer experienced this the most. The cancer-department of the Emma is quite accustomed to this reaction, I imagine. Cancer is a serious diagnosis, with a long procedure attached to it. But at least the parents are, because they are more hours and a longer period at the hospital, closely monitored.

part II: analysis

With ‘small’ procedures it can be a danger that the realization of the operation comes when back at home and will result in a form of PTSD (Bolt, 2011). There are quite some parents that will experience this in various degrees of intensity. Another form of realization is the degree in which children realize what is wrong with them and happening to them. Again, cancer is probably the best example. It is very hard to explain to children that chemo will make them better, when it is also the chemo that will cause their hairloss and will make them feel miserable.

6.3.2 Distraction

Especially with the youngest children (three or four) parents praised the facilities to distract their children from the hospital and what was going on. The playing room, the ‘droomboom’ and cliniclowns were all a help to them in distracting their children.

6.4 Trust “ daarna heb ik het idee, ik stap in een

trein en die gaat hard en daar kan ik niet uit en ik moet me focussen en dit is gewoon ons nieuwe leven en het is niet anders.” Trusting the hospital and it’s staf is one of the key elements of a hospital. Without it, the hospital cannot work.

6.4.1 Put trust in the doctor’s hands

When parents arrive at the hospital with their children, they have to hand over the care for their children to someone they don’t know. This needs a certain amount of trust in the person you are handing the care to. It’s not easy for most parents. Some parents described it as ‘you have to surrender’ others as, ‘you get aboard a train and you can’t get off, until you’re done’ or a ‘funnel that we have to go through’. Parents accept it’s necessary, but it’s a necessary evil.

6.4.2 Adapting to the situation

At the same time, parents are amazed at their own capacity to adapt to the situation. Not just with handing the care of their children to someone else, but the entire situation becomes ‘normal’ quite

quickly. In no time, the parents will ‘speak’ the language of the hospital and are accustomed to it. To their own surprise.

6.5 ‘Home’ “Het moeilijkste voor ouders is het zoeken naar een nieuw ritme. En daar kunnen ze hoogstens tips voor aandragen, maar de praktische invulling moet toch echt vanuit jezelf komen.”

6.5.1 The social aspects of a hospitalization

A hospitalization of a child derails the family life for a period of time, which is experienced as a very strange feeling by parents. Parents need to split their time between being at the hospital, working and taking care of their other children. This usually results in parents alternating being at the hospital and at home with their other children or at work. It’s only an inconvenience when a hospitalization is short, but when the hospitalization is long, it becomes a more pressing issue.

6.5.2 Transition

The hardest thing for parents was the switch between being at home or at the hospital. Within a couple of days, they are (sort of) accustomed to the surroundings of the hospital. Especially when returning to the hospital. But the time between home, getting to the hospital and finding your rhythm there took a transition period of some days (different to all). When at the hospital, parents need to create a new routine and rhythm for themselves.

6.5.3 A new home

One parent mentioned that after a hospitalization procedure of her son (with cancer) she has to get ‘used’ to her own home, because she got so used to the hospital over that period of time. The same goes for her son. The hospital became their home for a short period of time.

6.6 Living in the Now “Elke dag dat ze zich lekker voelt, is gewoon een lekkere dag. Zo moet je het bekijken. Het heeft helemaal geen zin om in maanden te denken, je moet gewoon in dagen denken.” 6.6.1 Extreme Moments

When children are extremely ill and parents are powerless in their actions, they experience this as the worst moments of the hospitalization. As a parent you can only wait and be patient. That is the hardest part, that you can not contribute to the curing of the child.

6.6.2 Living in the Now

Like the children, parents take the hospitalization day by day. ‘What happens tomorrow, happens tomorrow’ is the philosophy of most parents. This is quite in contrast to how they reacted on the treatmentplan. Personally, I think that parents take the different points within the treatment plan as checkpoints, but between these checkpoint take it day by day, because the course between the checkpoints can be altered every single day. The checkpoints are clear, but the way to get there is not. This requires some flexibility from parents.

6.7 Escape

Still, parents don’t like to leave their children alone. When the teacher visits the room or the children go to school, parents feel more at ease to take a break.

6.7.2 Escape outside the hospital

Taking their child home for, for example, the weekend, while it is still sick is something parents both love and hate. When hospitalized the family life is missed a lot. Therefore spending a weekend at home with everyone is something parents would want every weekend. But in the other hand, it causes a high amount of stress to the parents. They feel not (and sometimes are not) skilled enough to deal with any complications of the disease. One parent explained that when at home with her child, the child had an IV from the hospital with him, to administer his medicines. At home it became clear that a home is not build for an IV and when the IV started beeping at 6.30 on sundaymorning it stressed her a lot that she had to call for ‘homecare’.

6.7.3 Escaping the situation

Parents mentioned that they have the inclination to stay with their child 24 hours a day. A very logical inclination but not one that is good for them or their child. At one hand it is very good for a child to be without it’s parents part of the day. If not, he will fall behind in his personal development. At the other hand, it is good for the parent to be away from the situation of the hospital for a moment. Still, taking the decision to leave for a moment, even with this knowledge, feels like a bad decision for most parents.

6.8 Processing

“ Maar wat je enorm mist is gewoon even met je gezin of met je man zijn. ... (je) spreekt elkaar alleen maar bij de wisseling van de wacht. Da’s natuurlijk heel raar.” 6.7.1 Escape within the hospital

Privacy is something that all parents miss in the hospital. They expressed a need to go and sit somewhere with eachother to talk quietly. Off course this is possible in the room of the child, but parents would also like a moment with just the two of them alone.

“.. hij zal door ons eraan herinnerd worden. Ik ga allemaal dingen bewaren en ik ga hem wel degelijk dit meegeven dat hij dit heeft meegemaakt als ie later groot is..” When talking about the processing of the hospitalization, remembering the experience seemed to be important to parents. Especially with the younger children. A lot of the young children will not remember anything about the operation when they are older. Parents expressed the need to

part II: analysis

keep the memory for them and tell them about it when they were older. Because of the severity of the diseases that are sometimes treated at the Emma, when talking about processing parents also expressed that with the hospitalization and the disease of their child, their lives were changed. Even when the disease was completely cured and had no implications for normal life, the experience of the hospitalization still changed how they looked at things.

6.9 Emotional Impact

The period before the hospitalization is initially marked by uncertainty. Uncertainty on the state the child is in and the implications of the disease. Next to that, when a plan for hospitalization has been made, the actual hospitalization take still take a while due to waiting lists. The uncertainty can make parents feel powerless and aimless.

The start of the hospitalization

At the start of the hospitalization there are mixed feelings. At one hand, going to the hospital makes the situation very real; there’s no denying that there’s something wrong with your child. On the other hand, a hospitalization means ‘action’. It feels like a step forward, even though it’s a scary one.

Tiring

The day of hospitalization and the waiting for the operation are experienced as most tiring. These days are marked with new impressions and meeting the team that will perform the surgery. There’s a lot of conversations during the day that will require the parent’s full attention.

impact on parents

An entire hospitalization procedure (including the time before the actual hospitalization and the processing of the experience afterwards) is an emotional event to most parents. However, there is a difference in the impact of the different aspects of the hospitalization. The actual impact is, at least to me, hard to measure, but between the interviews and observations, I determined which parts of the hospitalization have more or less impact and why.

Before the Hospitalization

powerless! I have to trust the doctor All Set?

ACTION!

It’s

All this info!

Here we going to Go... be okay

no Sleep

Figure 6.1 emotional impact of the surgical procedure on parents during hospitalization

The Operation Procedure

An operation procedure is slightly different in all hospitals, therefore parents appreciate the fact that they are prepared for the procedure.

Waiting

The waiting, while your child is in surgery is the worst moment for most parents. It’s a moment of utter powerlessness.

Relief

Being back with your child after the operation, has a very good feeling to it.

The results of the Operation

Unfortunately this soon makes way for uncertainty on the outcome of the operation. While the child is resting from the operation, parents need to wait for the results.

Go home

Going home after an operation would seem like a moment of celebration. However, at this point, most parents (and children) are quite tired and just go home without any goodbye, or whatsoever. Giving the ‘going home’ an awkward feel.

Is all okay?

Parents mentioned that right after the operation, they would, at times, overreact at for example a simple cold, fearing that somehow the disease had come back.

Relief

Design opportunities

From the interviews and observations, a lot of interesting possibilities for designing arise. Below are the most interesting:

Communication

During the interviews, it became clear that communication (with doctors, with eachother, your child and siblings) is one of the main topics. When communication is clear and, at times, facilitated, a lot of anger, frustration and fear can be prevented. Giving the parents a way to communicate is one of the design opportunities.

A new role

I think that (part) of the way parents feel can be explained by the fact that they don’t have a proper role in the hospitalization of their child, which makes them insecure on how to handle the situation. On the cancer ward, for example, parents are actively involved in the caring for the child. Off course, this is a much longer hospitalization and this brings other problems too (with work of the parents, for example), but parents their seemed to be much more part of the hospital than just being there. Trying to give parents a role in the hospitalization seems like a good design opportunity. Empower them to get control back.

The Verdict

Together

Go home

Is all okay?

When hospitalized for a long period, the feeling of ‘together’ of the family, becomes very important. Creating togetherness for the family can be a design opportunity.

hospitalization procedure

part II: analysis

Part III: Vision “The point is, when you have a chance to have a big adventure, especially if, like in your case, it doesn’t hurt anyone, it’s just plain foolish not to take it. “ -Mink Stole-

7. PRESENT AND FUTURE SITUATION Emotion Management* at the Emma

The next pages will describe the present and future situation of emotion management at the Emma. In this, we are talking about the emotion management of the patient and his family. All the individuals that are tended to by the childcare worker. This two pages start with an overview of observations and conclusions from research, that explains the key drivers for the interaction with childcare worker, child and caregivers. From these insights, we will derive a vision on the emotionmanagement within the hospital. From this vision, an overall vision for the design process will be created. The overview starts in the below-left corner from the situation ‘now’ and moves to the below right corner to the ‘future’ situation. The overview moves from the concrete situation to an abstract level and goes via the abstract level back to a concrete situation for the future.

NOW

• • •

•

driven by the activities in the hospital, not the other way round. The process of the hospital is the driver. goal oriented: The emotion management has a specific goal ‘the prevention of trauma’ Focus on information management: Because of the philosophy on prevention of trauma experiences, the focus is on information management. hospital oriented: The hospital and it’s procedures are at the basis of the emotion management. This is very closely linked to the focus on information management. Because the philosophy is on giving information on the hospital procedure to prevent trauma experiences, the main topic also becomes hospitals. conﬁned by the hospital: The childcare workers are linked to the hospital, therefore the emotion management of the hospitalization will be confined by the hospital.

INTERACTION

CONTEXT

• process driven emotion management: the management of emotions is

INTERACTION CHILDCARE WORKER

TOYS

Supervized: The playing behaviour of children is closely supervized, while in the hospital (due to for example an IV)

Limited Exploring Behaviour: The natural exploring behaviour of little children is limited within the hospital.

With Parents not peers: Within

the hospital, children will play with parents and not peers. (with exceptions) Playing with peers is necessary for the personal development of the child.

• Personal: The interaction with • •

the childcare worker is personal and accustomed to the family. ‘Dutiful’: Preparing for the operation is something that you have to do Telic*: The interaction with the childcare worker, when talking about the preparation procedure, is very goaloriented.

• Active Role Childcare Worker: Within the preparation procedure, the childcare worker takes a very active role. Whereas the role of the children and parents is more passive.

Guidelines New Product

Right now, there are no specific products for the age-group that focus on emotion management. Therefore the products used to explain some hospital procedures and the interaction with the childcare worker are combined in the overview. Because the interactin of the products and with the childcare worker can not immediately be translated to new interaction qualities, a more abstract level ‘context’ is used to move from the present to the future. From the future context, interaction qualities can then be derived. The qualities of interaction formulated for the new product will also function as the guidelines for the product design.

FUTURE • Available to all: The childcare workers are up to their necks into work,

• •

CONTEXT

•

which will mean that they are not always available when necessary. Making a product to support the patients will mean it is available, whenever you want it. Personal Emotion Management: The product will focus on the personal well-being and emotion management of the patient (see layers of emotion management) Patient Oriented: The product will be centered around the patient, not restricted by the hospital, but going with the patient from the beginning of the story to the end. Making use of emotions : ‘It’s an Adventure’ A hospitalization is an intense experience, which will always include some negative emotions. However, this emotions do not have to be pushed aside, but can be used in the experience

Active patient, Facilitating Childcare

Worker: To free up time for the childcare workers, the product needs to stand on it’s own. The patient will have the active role and guide the interaction. The childcare worker will be facilitating.

available when the patient feels the need to use it. Make it more spontanuous.

Patient in Control: With so many new impressions at the hospital, it will be nice to have a product that will give (the feeling of) control to patients.

Paratelic*: The activity of the product should be engaging, without a specific goal. Making use of Play: Using Play as the basic ingredient for the product, will make the interaction natural and bring out the exploring behaviour of children.

INTERACTION

Natural & Spontaneous: Interaction with the product should be natural and be

The three layers of Emotion Management

Analyzing the situation and the interactions of the current Emotion Management at the Emma, resulted in three layers of Emotion Management. While observing, it became clear that the childcare workers at Emma need to work through different steps of emotion management, like the layers of an onion. Because the layers have to be peeled away, time between the layers is spent unequally.

Layer One: The hospital (procedure)

First and foremost, the childcare workers are asked to prepare the patient and family for the hospital process. Whenever the ‘system’ of the hospital is ready to procede to for example the operation, the patient and family need to be ready and on track. They ‘system’ of the hospital is not waiting for them. And the childcare worker needs to get them ready.

Layer Two: The social environment

Within the hospital, privacy is scarce. When someone is not feeling well, emotionally, it will influence all. Secondly, when talking about three to six year olds, a lot of effort is put into managing the caregivers in their emotional response to the situation. They are better at voicing their worries than the little children. Maintaining the social environment, is managing the emotions in a certain area (like a room) in which people can influence eachother, emotionally.

Layer Three: Personal Well-being

When a patient is prepared, ready for the operation and it’s social environment steady, then there’s some time for personal reflection. Because this is layer three, there’s hardly ever time enough to do this thoroughly with patients.

The Layers of Emotion Management

the process of the hospital the social environment personal well-being

8. VISION Taking the three layers of emotion management as a basis, a metaphor was created to explain the current situation and work towards a vision for the design. The vision represents the interaction and qualities aimed for in the design. To create a more vivid image of the vision, a collage of the interaction qualities was made.

A hospitalization procedure as a stool

To explain the situation, a metaphor has been created. In this, the patient hospitalized is represented by a patient on a stool. The stool in this represents the hospitalization and it’s process. The three legs of the stool represent the three layers of the emotion management. Because the process of the hospitalization only leaves enough time for two of the layers of emotion management, the third leg is too short.

Fall of the chair

Because one of it’s legs is too short, the chair will very easily tip over and let the patient fall of the chair. Like the chair, this will also happen within the hospitalization process if the personal well-being of the patient is not tended to. The patient will ‘derail’ from the process.

The Product

The product focusses on the gap in the personal emotion management. Like with the leg of the stool, the product itself will not carry the entire weigth of the personal emotion management, but will support it, to cover the gap. Focusssing on personal emotion management will also mean that the product will focus on the patients.

THE PATIENT, WITHIN THE HOSPITAL PROCESS

THE PROCESS

DIFFERENT LAYERS OF EMOTION MANAGEMENT: THE HOSPITAL, THE SOCIAL ENVIRONMENT & PERSONAL THE 'GAP' THE PRODUCT HAS TO FILL

Personal Emotion Management

When looking at the personal emotion management of a child, we can not deny that being at a hospital is, at it’s basis, not a positive thing. It means something is wrong. Having said that, this doesn’t mean that a (necessary) hospitalization can not be a positive experience. Negative emotions are not always equal to a negative experience. With some entertainment, negative emotions lie at the basis of the experience. You can think of a scary right at the fairground or an exciting story. Negative emotions actually help to make the experience of that. If the negative emotions felt when hospitalized, can be used for a positive experience, the whole feeling of hospitalization will change.

At the moment, a hospitalization can feel like a train ride where you have to get on, but can’t get off. The ride is fast and the destination is unknown, you just have to trust that the engine driver will get you there.

Being confined to the train, while you don’t know where you are going and how far you are in the process can feel claustrophobic and scary.

Unfortunately it is not possible to take away all the feelings of anticipation and excitement. We can however change the feeling of the experience. With the right mindset, anticipation and tension can feel like an exciting right at the fairground. The product design needs to take the qualities of an exciting ride and with this change the mindset of the patient. The hospitalization can then be seen as an adventure, which at times is scary, can be overwhelming, but is also funny and a memorable experience.

Adventure For Kids: Using Negative Emotions to create a Rich Experience

Part IV: Conceptualisation

â&#x20AC;&#x153;The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure , the process is its own reward. Adventure is worthwile in itself. â&#x20AC;&#x153; -Amelia Earhart-

9. PERSONA’S AND PROTECTIVE FRAMES

The vision for this project is to make ‘a hospitalization an adventure’. This is an ambitious and difficult goal and to achieve this with a product design there are two main points of interest.

Because Apter’s main focus is on the emotion ‘fear’ not all negative emotions will fit in these frames. Fokkinga (2010) therefore added four more frames.

9.1 Protective Frames*

Firstly, the fact that a scary story or a rollercoaster is an enjoyable experience, is not without reason. It is the fact that they are within a specific frame of reference that makes them enjoyable. You can enjoy and action movie and find explosions thrilling, whereas if this were to happen to you in real life, this wouldn’t quite be as enjoyable. Watching and experiencing it through a movie is safe, you know it is just a movie. Experiencing fear through a movie, is one example of a protective framework. A protective framework can be seen as a safety zone which enables you to experience negative emotions in an enjoyable way. The frame assures you there is no real threat to you. Apter (1982), divides between three different kind of frames.

• the confidence frame: there is danger, but I am able to control it

• the safety zone frame: there is danger, but I am a safe distance from it

• the detachment frame: there is danger, but I

• • • •

a possibility frame a rebellion frame an implication frame a universal frame

Using a protective frame as the basis for the design will create a safe environment in which the negative emotions that, at times, come with a hospitalization will be experienced in a positive way.

9.2 A Personal Experience

Secondly, emotional responses are very personal. Everyone will react on a situation differently. But to be able to design something for the personal emotion management of the patient, the emotional experiences need to be classified. To be able to do this, I will use the ‘Play Character’* model (Gielen, 2010) based on the Learning Styles by Kolb. As mentioned in Chapter 5, children process most of their emotions through play. Therefore the different ‘play styles’ will be used to work on personal emotion management.

am not interacting with it.

IMAGINATIVE

DREAMER

ACTOR

RECEPTIVE

ACTIVE

THINKER

ACHIEVER

REALISTIC Figure 9.1 ‘Play characters’ model (Gielen 2010)

In the model, four characters are defined:

Dreamer: A dreamer is imaginative and

reflective. Activities will mostly be inside the head of the dreamer.

Actor: An actor has a high energy level and will use different roles to play out different sides to a story. Thinker: A thinker is calm of nature, but very

curious. He wants to know everything! He is most happy exploring and discussing concepts and things.

Achiever: The achiever is active by nature and

will turn most activities into a competition. An achiever is very keen on learning new skills and showing them off.

Looking at the different styles, you will probably recognize parts of more than one style. That’s natural. Most people are a combination of two or three characters. However, like with the learning styles of Kolb, when in a new situation, you will be proned to use the style that is most natural to you.

2010) were used. There are ten complex qualities which each represent a combination of a positive and negative emotion that form a rich experience through the use of a protective framework. The complex qualities - The challenging, The exciting, The eerie & The unreachable fit and overlap the four characters the best.

Dreamer - The unreachable

The overlapping quality between the dreamer and the unreachable is the longing for something out of reach and dreaming about this.

Actor - The exciting

The overlapping quality between the exciting and the actor is their enthusiasm. An actor will throw himself full of enthusiasm into a new situation, without thinking about the consequenses. He will therefore at times encounter something that he did not expect and will scare him.

Thinker - The eerie

The thinker & The eerie are based on curiosity and mystery. The expression ‘Curiosity killed the cat’ would fit very well with these characters. They are fascinated and want to know everything, but if it comes too close, it can become scary.

Achiever - The challenging

9.3 Persona’s

We know have a strategy to create a safe environment and a way to classify the emotional experiences of the patient. However, the two need to be combined to be useful to the design. Only when the characters are combined with the right protective frame, an environment for personal emotion management can be created. For combining the four characters (dreamer, actor, thinker and achiever) with the right protective frame, the complex qualities* (fokkinga,

The achiever and challeging both focus on a challenge that you have to overcome. Like the challenging, the achiever thrives in a competition. However, without an obstacle, there is no challenge to overcome. To make these qualities come to life, on the following pages, personas have been created with the four characters. The characters are combined with a specific age and the protective frame, resulted from comparing the characters to the complex qualities.

THINKER

ACTOR

ACHIEVER

Figure 9.2 Complex qualities (Fokkinga 2010) with Play characters overlay

DREAMER

PIP

ars

O CT

COGNITIVE DEVELOPMENT

Pip is starting to understand the difference between ‘past’ and ‘present’, but still has difficulty understanding waiting and the need to wait for attention (for example, Pip does not understand the need to take turns on the swings) Pip can count up to ten, but has no real understanding of quantity more than two or three. He is also starting to learn the names of all the colours. Right now, Pip knows ‘red’ and ‘blue’, his favourites. Pip will very proudly tell you his full name and sex.

AND I’M P I P M ’ HI, I A BOY!

SOCIAL DEVELOPMENT Pip is starting to move out of the family circle and will be looking for a playgroup with peers. He is generally very co-operative and will like to help adults (parents, teacher) with all kinds of activities. Pip also starts to enjoy games with other children and share, but he still needs to be in a really small group. With playing with other peers, language is becoming an increasingly important tool. When playing with peers, Pip’s vocabulary will get a real boost

EMOTIONAL DEVELOPMENT Pip now, compared to his two-yearold-self, is much more emotionally steady. He is no longer insecure of his abilities and feels confident. He is therefore much more at ease. Pip is friendly most of the times, sociable and eager to please everyone. He is affectionate towards his mum, dad, older sister and their dog. Pip is used to playing with them or on his own. But he is starting to experiment with playing together with his peers. He likes playing and sometimes even sharing with others, but not too many at once. And only when familiar. In new situations he will fall back upon his parents and sister, until he is sure that he feels confident enough to start playing.

M AX FRO S ARE M : E IK ING ACTS L HE WILD TH T WHERE

PIP PLAYCHARACTE

IMAGINATIVE

DREAMER

3ye

ars

ACTOR ACTIVE

THINKER

ACHIEVER

REALISTIC

PIP’S DOMINANT PLAY CHARACTER IS ACTOR. This means that Pip likes to act out everything. He’s the kid with the tiger suit on, mimicking it’s actions and feeling what it’s like to be a tiger. He acts on ‘gut’ instinct rather than analysing a situation and will rely on others to provide him with information. His presence can be overwhelming at times, Pip is always energetic. He will approach a new situation full on, by actively approaching it. One of his favorite toys is his ‘mouse’ suit. When wearing it, he feels good and safe. He likes to find little holes everywhere to hide and to move around really fast, just like a mouse.

across something that he didn’t expect and threatens him. Because of his high arousal level, this will result in panic. Likewise, he will experience joy when in control of the threat. RELAXATION

HEDONIC TONE

RECEPTIVE

- T HE ACT OR

EXCITEMENT

ANXIETY

BOREDOM

69 HIGH AROUSAL

DISTANCE OR CONTROL FRAME THREAT JOY PANIC

PIP’S FAVORITE TOY

OFFERING CONTROL A control frame for Pip PIP’S CHARACTER IS TO EXPERIENCE A SITUATION BEFORE HE HAS THOUGHT THROUGH what is going to happen. He

is also very energetic and active by nature. Combining the two will mean that Pip usually has a high arousal level. And because he will throw himself into a new situation, without thinking, he will at times come

PROTECTIVE FRAMEWORK Visualized, the interaction of Pip with the threat will look like above. If the threat is under control, it will result in joy. If not, it will cause panic. What makes the threat controllable is a protective framework. If we assume that the hospital poses the threat in the interaction, than Pip needs a protective framework that will give him control over the situation to give him a feeling of joy. A product for Pip will focus on giving him this control.

I RL

s ear

R E K

I TH

COGNITIVE DEVELOPMENT

At four, Charlie is starting to discover and experiment with what it means to be ‘Charlie’. He starts to see himself as an individual and will act accordingly (I want..., I need....). He knows there is a ‘future’ and will understand ‘tomorrow’, but Charlie does not yet understand cause and effect. He will sometimes confuse fact and fiction, but is able to tell long stories. He is also able to recount and retell recent events.

EMOTIONAL DEVELOPMENT Charlie will show an up and down emotional patterns with his four years. A new wave of cognitive, physical, emotional and social development will cause confusion for him. This can result in very quick moodswings. However, in comparison to the temper tantrums of the two year old, they are relatively mild. Charlie will rather show his emotional unsteadiness with cheekiness and impertinence. Starting to discover his own ‘I’, he can be very self-willed and strong-headed which can lead to conflict. Charlie likes to do it his way!

HI, I’ AND M CHA HAR I LIVE RLIE BOU RST AT 13 REET

SOCIAL DEVELOPMENT Charlie likes to be around other children, but his actions will alternate between teamplay and conflict. He does however understand that he has to use words rather than start fighting. He takes turns and plays games, but may very well cheat to get what he wants. When friends are hurt, he will help and sympathize.

IKE: ACTS L K HOLMES OC SHERL

ARACTE

PLAYCH

IMAGINATIV IMAGINATIVE

DREAMER

ACTOR

RECEPTIVE

ACTIVE

THINKER

ACHIEVER

REALISTIC

CHARLIE’S DOMINANT PLAY CHARACTER IS THINKER. This means

he’s the kid that wants to explore and question evertything. ‘Why?’ will be a constant question. Charlie is curious and is and not afraid, but careful in his approach. He will analyse a lot and approach situations from a logical point of view. Ideas and concepts are more important than people. He can really lose himself in the exploring and be by himself for quite a while. In the end however, he will enjoy talking about his explorations with others. Charlie’s favorite toys are his binoculars, they are perfect for exploring and learning new things from a safe distance.

CHARLIE’S FAVORITE TOY

OFFERING SAFETY

HEDONIC TONE

A distance frame for Charlie

HIGH AROUSAL

CHARLIE’S CHARACTER IS TO ANALYZE A SITUATION BEFORE DELVING INTO IT. He is

calm, but curious by nature. And this curiosity will stimulate him to search the boundaries of his comfort zone. At times he will even cross it to satisfy his curiosity. When looking at Charlie’s natural energy level, it can be expected that his arousal level is mediate. Especially since he is used to push the boundaries of his comfort zone. However when something unexpected happens or he is no longer in control of that which he is exploring, fear will arise. His natural reaction will be to step back until the situation is under control again. DISTANCE FRAME

FASCINATION

MYSTERY

FEAR

PROTECTIVE FRAMEWORK Visualized, Charlie’s exploring behaviour will look like above. He will explore any mystery. When he is safe in his exploring, he will experience fascination. When that which he is exploring comes too close and Charlie is no longer safe, he will experience fear. Within the hospital, we can assume that there are enough mysteries to explore for Charlie. To evoke the fascination Charlie needs a protective framework that creates a distance between him and that which he is exploring to make him feel safe. A product for Charlie will focus on providing this safety.

P SO

ars

H AC

E EV

COGNITIVE DEVELOPMENT

Sophie, at five, is confident again. She has good self-control. Home is no longer enough to satisfy her curiosity. She is very ready to go to school! Sophie will decide what to draw, before she begins her drawing (allthough ‘inspiration’ will often come from neighbours and what they are drawing). Sophie knows when something is ‘true’ or ‘false’. Sophie loves to be read or told stories, which will often be played out with friends in dramatic play, later.

ND OPHIE A S M ’ I HI, LD! EARS O Y 5 ! M ’ I SCHOOL O T O G AND I

SOCIAL DEVELOPMENT Sophie is ready to mix with a wider group and will choose friends among them. She is proud of her achievements and the things she owns. She is friendly with her friends most of the time and understands the need for certain rules. Sophie is also protective towards younger children and pets and will genually be concerned and upset if they are upset.

EMOTIONAL DEVELOPMENT Sophie has achieved a measure of independence which will make her able to cope with the larger group of children at school. She no longer needs so much adult attention and can be proud of her achievements. However, she still thrives when praised by an adult (parent, teacher). Sophie has developped a sense of sensibility but will need encouragement in order to keep on progressing in her emotional development. Sophie still has the urge to cheat to win, even when playing a game with rules, but her newly learned sensibility thought her the understanding of ‘not fair’.

IKE: ACTS L

MATILD

ACTE

HAR LAYC

SOPHIE’S CHARACTER IS TO TREAT A NEW SITUATION AS A NEW CHALLENGE. She will

IMAGINATIV IMAGINATIVE

DREAMER

ACTOR

RECEPTIVE

ACTIVE

THINKER

ACHIEVER

REALISTIC

SOPHIE’S DOMINANT PLAY CHARACTER IS ACHIEVER. This means she is

that kind of kid that loves to go on a quest and master skills. Sophie is energetic by nature and always up for trying something new. She loves competition and learning new things. In this she can be slightly obsessive, she has to continue until she has mastered the skill. After mastering the skill, the object will become less interesting. Sophie will then go and look for a new challenge. Sophie always wants people around her. It is no fun, to compete on your own. There has to be someone to compete with. Sophie’s favorite toy is her bike. She can do all kinds of games with it; do a race, learn tricks, add new features to her bike to make him more beauriful.

SOPHIE’S FAVORITE TOY

OFFERING POSSIBILITIES

ST OR MI NF CO

HEDONIC TONE

A possibility frame for Sophie

BOREDOM

HIGH AROUSAL

ANGER

actively approach it and try to work through everything that crosses her path, relying on her skills. She is by nature energetic and will therefore be more likely to have a high arousal level. She will find joy in overcoming all the obstacles; in telic-oriented activities. However when she is not able to overcome the obstacle, she will experience frustration and anger.

POSSIBILITY FRAME OBSTACLE JOY

FRUSTRATION

PROTECTIVE FRAMEWORK Visualized, Sophie’s challenge behaviour will look like above. When she overcomes an obstacle, she will experience joy, when she can not, she will experience frustration. When we assume that the hospital will provide a few obstacles to overcome, Sophie needs a possibility frame, to experience joy. To provide Sophie with enough possibilities to overcome the obstacle, she will be able to. A product for Sophie will focus on creating possibilities.

R E M

A MI

s r a e

E DR

HI, I’ M dam ian AN I’M 6 D YEARS OLD!

displaying very strong verbal and physical temper, but he can also be very caring and considerate.

COGNITIVE DEVELOPMENT

Damian, at six, has quite some physical energy. This can result in him being easily distracted. Learning will therefore work best, when exploratory methods are possible. Damian’s mind is very active and he will switch between activities and topics easily. However, decisions are not made as quickly as before, since they require thinking through. Damian becomes more and more interested in learning to read, since he loves stories. He can already write his own name, but will sometimes reverse the ‘d’.

EMOTIONAL DEVELOPMENT Damian, at six, will enter another period of emotional upheaval. Between the age of five and seven, there is a major change in the way children think and feel. Damian is therefore at times experiencing difficulties in maintaining balance in his emotional behaviour. This can result in him having mood swings, periods of frenzied activity and nightmares. Because of his increased mental ability Damian is now able to see that there are many sides to a question. This can make him hesitant, indecisive and frightened. When this is causing Damian stress, it will result in him having nightmares. In his moodswings, Damian is capable of

SOCIAL DEVELOPMENT Socially, this is a difficult time. Friendships form and dissolve quickly. Children love parties and social functions at this age, but it can also be a traumatic time (there’s nothing worse than ‘you are not coming to my party’). Damian loves attention from the teacher/his parents, but he sometimes finds it hard to accept when he is corrected.

T E PILO H T : E IK CE ACTS L IT PRIN T E P E L FROM

ACTE

HAR LAYC

IMAGINATIV IMAGINATIVE

DREAMER

ACTOR

RECEPTIVE

ACTIVE

THINKER

ACHIEVER

REALISTIC

DAMIAN’S DOMINANT PLAY CHARACTER IS DREAMER. This means Damian is quite literally a dreamer. He is very creative and imaginative and will create his own version of reality. Damian loves stories and drawing. He is, by nature, very calm and will need a lot of incentive to become more active. In his playing behaviour, he will mostly be playing on his own. Organising teaparties for him and his teddybears is one of his favourite activities. But Damian’s all-time favourite toy is his TinTin rocket that features a prominent place next to his bed. He loves to think about the stars and how it would be like to fly amongst them.

OFFERING INTERACTION

OR MI ST NF CO

HEDONIC TONE

EXCITEMENT

NEGATIVISTIC

SULLEN

HIGH AROUSAL

approaching it and it will take a while before he will participate. While he is observing, Damian is likely to create his very own imaginative version of the reality. Allthough at six Damian is more energetic than before, he is still very calm by nature. This will result in a quite low arousal level, even more so stimulated by his receptive behaviour. When however, he is no longer stimulated in his dreaming-desire and there are no new incentives to thrill him, he will fall into a state of (boredom)depression INTERACTION FRAME

DESIRE

ABSENCE

SADNESS (BOREDOM DEPRESSION)

PROTECTIVE FRAMEWORK

DAMIAN’S FAVORITE TOY

RELAXATION

DAMIAN’S CHARACTER IS TO OBSERVE A NEW SITUATION BEFORE ENTERING IT. He will be quite hesitant in

ANXIETY

Visualized, Damian’s dreaming behaviour will look like above. When Damian gets an incentive that will fill the absence and start the dreaming behaviour, he will experience desire. However, when damian has nothing to dream about, he will experience sadness (in the form of a boredom depression). A product for Damian needs to focus on facilitating the incentive that will get him dreaming.

10. INTRODUCTING: THE ADVENTURER’S KIT

10.1 The Beginning

This chapter will tell the story of the adventurer’s kit. The kit is introduced in the same way you would be introduced to it as a user and is illustrated by stories of use. Italic texts tell the story of the adventurer’s kit. Normal text will provide background information and insights into the design. Imagine you are a four year old. Today you are going to the outpatient clinic. You are not quite sure what this is, but you’ve heard it’s part of the hospital. That doesn’t sound too good, but you’re not really sick, so how bad can it be? Going to the clinic is kind of exciting, your mum and dad picked you up at school and drove to the hospital. It sort of feels like a daytrip! At the clinic, you have to wait for you turn, but thankfully, you can play in the play-corner. You’ve just finished building a very nice castle, when your mum comes and picks you up for the appointment. You are somewhat annoyed, because you are 100% sure that someone will destroy your castle, but the man you are meeting seems kind of important. A bit intimidating even. The man has a lot of papers, you can see your name on one of them, but can not read anything else. Your mum and dad seem very serious, which scares you a little. The man explains that you need an operation; the disease you grandpa had, you also may get. They therefore want to do a preventive surgery to make sure you will not get it either. You know your grandpa was sick, but you are not, so you don’t understand why they need to operate. You are too afraid to say this now, but will ask your mum later. The man tells you that being in a hospital is like an adventure. And you, as a real adventurer, will need an adventurer’s kit, to help you through the adventure.

Figure 10.1 Visiting the outpatients clinic

Explaining a surgery to you children is not easy. The kit can empower child, parents and childcare workers (when hospitalized) to communicate and experience the hospitalization in a positive manner. The Adventurer’s Kit is handed to the children at the outpatient clinic for a couple of reasons:

• Firstly the kit forms a counterweight for the

•

At the desk, you mum and dad make new appointments. When they are done, the doctor’s assistent hands you a suitcase. Not just any suitcase she says, but an adventurer’s suitcase. You are excited and feel quite special that you are given this suitcase. Your curiosity kills you and you want to open it, but you mum and dad make you wait, till you are at least in the car. When your dad lifts you and says ‘hold on to your kit’, you realize that you are exhausted and slowly fall asleep while you are walking to the car.

•

news, just received. Having to undergo a surgery is never something pleasant, especially when it concerns your child. Receiving something nice at this moment, will provide some comfort. Secondly, explaining a surgery to children is not easy. Most parents instincts will be to keep it as far from a child as possible. He doesn’t have to worry about that. But off course he will! The child has been to the clinic too and knows something is wrong. Not openly discussing the operation can create an environment in which children will come up with their own version of the operation. Finding a balance between talking about the operation, but not overly worrying the children is something the kit can help parents and children with. And finally, taking the kit home, before the operation, will create familiarity with it. The kit will not be synonym for the hospital, because it has been home with you.

10.2 At Home

At home, you are allowed to open the Adventurer’s Kit. There are a lot of different things in the suitcase. There’s a flag, a passport, a letter, and stories. You want to look at everything, but your mum wants to start with the letter. Together you read it. The letter says the following:

“Dear adventurer, Are you ready for your big adventure? Every adventurer needs an adventurer’s kit for his adventures. Let me tell you the basics of everything in your suitcase. F irstly, being an adventurer means you will travel and meet lots of people. No adventurer can therefore go without a passport. This one is especially made for adventure. Don’t forget it when you go on an adventure! Then, a flag, also very important. As an adventure, you will always need a baseca mp. The flag will mark you baseca mp. Make sure everyone will recognize the flag as yours! And off course, the adventurer’s manual. Me and my fa mily are experts on adventure. We therefore wrote all our adventures down for you, to guide you through yours. The manual will explain everything.

Figure 10.2 Making the flag at home

The Adventurer’s Kit has quite some parts in it. They can be overwhelming when introduced at the same time. Therefore some of the parts of the kit are hidding under a double bottom. When opening the kit, the first visible are the passport, flag, introduction letter and adventurer’s manual. Starting with these will slowly introduce you to the story. Having a double bottom has some more advantages.

Good luck adventurer! If you need help, you know where to find it. xxx Sophie Beentjes p.s Did you look under the double bottom yet?

Tomorrow you’re going to look at the passport. But to start, you wrote your name in it. The rest your mum will have to write. AVO

ERS TURI

NAAM

You take out the flag and start working on it. While your mum starts cooking, you paint the flag in a lot of different colours. Tonight the paint can O dry. Tomorrow FOT ELF! JE Z IER IER JE K H PLA EKEN H you want T F O to put on some sparkles.

FAMILIE

In addition, the double bottom will place some weight on the parts beneath the double bottom. They are more special, since they are hidden and out of sight for all. The parts beneath the double bottom are the parts that represent the different characters (made in chapter 9) and are the most important parts of the product. RT

POO

PAS

Next to gradually introducing the parts of the kit, the double bottom gives children the opportunity to add their own stuff to the suitcase, when going to the hospital. The suitcase is not only an adventurer’s kit, but also literally a suitcase for anything to bring.

EENTJES B E I L I M A F DE

10.3 The Stories

At the heart of the suitcase lie the stories of the ‘Beentjes Family’. The four children of the family each are an embodiment of the four play characters formulated in Chapter nine. The family consists of Pip (who is an actor), Charlie (Who is a thinker), Sophie (an achiever) and Damian (a dreamer). In the manual all four will explain how they feel and deal with adventure. With this, they are introducing the toys that are hidden under the double bottom and are related to each character. With the four stories of the four characters, all four of the characters are introduced to the child. Within the stories are, next to the characters, the accompanying protective frame and a coping strategy (in the form of the toys related to the character) embedded. Introducing the stories at home, will make the children familiar to all the characters and related toys. They can experiment with all of them and decide which one they like best. The story that fits them best is most likely the character that is most natural to them and will be of importance at the hospital.

DAMIAN

- dreamer

SOPHIE - achiever PIP - actor

CHARLIE - thinker

Figure 10.4 The four play characters

The next day you and your dad will read the first of the stories in the adventurer’s manual when it is time for a bedtime story. The story today is about Pip. Pip wears a mouse-suit all the time. And he has four friends; a frog, a squirrel, a rabbit and a hedgehog. Pip wants to go on an adventure and asks all of his friends what they think of it. The frog is excited and jumps high into the air, the squirrel is sad and hides her tears with her tail, the rabbit is angry that he is not allowed to come too and starts to stamp his foot and the hedgehog is scared that something will happen to Pip and curles into a ball. In the adventurer’s Kit you find Pip’s friends, the frog, squirrel, rabbit and hedgehog. You take them out and place them in your bed. Now you can ask them questions too. Your dad asks you what they say about you going to the hospital. You anwser that the rabbit is kind of angry, because you aren’t really sick. He knows your grandpa was sick, but you aren’t, so why do you need a surgery? The hedgehog wants to know if it will hurt.

Figure 10.3 Reading the stories of the Beentjes family

10.4 Hospitalization at Emma

When the day of the hospitalization arrives, the Adventurer’s Kit comes with you and your mum and dad to the Emma. You put some extra pencils in, a coloring book, your binoculars and a small teddy (the big one is in mum and dad’s suitcase). When you arrive at the ward, a childcare worker asks for your passport and stamps a check-in stamp in there. Your adventure has begun! The Adventurer’s Kit is meant to support the child and family at the hospitalization and therefore needs to be brought to the hospital when hospitalized. The first item used is the passport, where the child will receive a stamp to check-in. The stamps (both check-in and check-out) are used to mark the boundaries of the hospitalization. This is most beneficiary for ‘achiever’ children. They work well with a specific begin and ending. Next to this, it will move the experience of hospitalization towards the experience of going on holiday, where you also need to check-in and out. This adds to the big frame and mindset of making it an adventure, instead of a hospitalization.

Figure 10.5 Arrival at Emma, with the Adventurer’s Kit

10.5 Placing the Flag

When you are at the ward, there are a lot of beds and people, some other children, and a playroom. You are shown to your bed by a nurse. She asks if you brought your kit and your flag. Proudly you show her your painted flag, full of sparkles. Your bed is now your basecamp and you should put your flag up there. Together you pick a spot at the foot of the bed and tape the flag to the bed. Placing the flag on your bed is kind of exciting, normally you are not allowed to tape something to your bed. You climb on the bed, look at the flag and feel very proud. When at the Emma, the flag comes into play. At the ward, when the bed is ready. The child and childcare worker or one of the nurses can attach the flag to the bed. Doing this will explicitly make the child claim the bed as his. Making it a safe base for him in the new hospital environment. Also, taping the flag to the bed, will give the child a sense of control and power. He is allowed to add something of himself to this new environment. The child will undermine the authority of the hospital by adding something of himself to it.

Figure 10.6 Placing the flag on the hospital bed

Figure 10.8 Pip’s Tools

10.6 The Characters at the Hospital

When at the hospital, the different play characters will start to play a role. Having all four of them together in a suitcase, also means that the children have the freedom to make their own strategy. It could for example be possible that from a characters’ point of view, you are mostly an achiever and you like playing with the ‘bikkelen’ game the most, but when going to the operation you’d like to take the squirrel from the actors’ characters, just in case. The characters help to guide the childcare worker to a quick strategy that suits the child the most, but also give the child the freedom to choose between four coping strategies.

10.7 Pip - The Actor

The storyline of Pip tells about his four friends (see page 79) These four animals are, next to a protection frame for Pip, a communication tool for the youngest children within the agegroup (3, 4 years old). They have a hard time explaining what they feel. They are not yet able to put a label to their emotions. And because of that can experience frustration while communicating this to others. The animals give them the tools to do so. Now they don’t have to name the emotion. They can use the animal to refer to. Because you want the children to be able to use this communication tool at any moment, the animals can be carried on their clothes via velcro.

Pip’s Protection Frame

DISTANCE OR CONTROL FRAME THREAT

JOY PANIC

Because of his high energy and enthusiastic nature, Pip will dive into situations, before thinking them through. He will therefore, at times encounter a threat that he didn’t foresee. He will then need a way to gain back control or put a distance between him and the threat. Also, being an actor, means that he will naturally like to act out the situation. He likes to take on a character and react on a situation through this character. Combining the two results in creating characters that the actor can use as protective frame. They are quite literally a shield to hide behind when trying out different perspectives to a story. Through the animals an actor can replay an event and decide how he feels about this. Also, via this animals the actor can raise questions and issues. He can ask the question, but doesn’t have to be afraid anyone will address him for it, because it was one of the animals that asked the question. He just got the message across.

Figure 10.7 Playing with the animals

10.8 Charlie - The Thinker

The storyline of Charlie tells about his need to explore and know everything! In the story of Charlie in the Adventurer’s manual, Charlie explores an ants’ nest. He loves the fact that these ants can carry all this stuff and places all kinds of things on their track, just to see whether or not they will pick it up. Then, he feels a lot of tingling in his shoes and on his leg. When he looks down, he can see ants crawling on his pants and shoes. He wants them to stop tingling and runs away. When the tingling doesn’t stop, he runs into the house takes off his shoes and his pants and jumps around till the ants are gone. His mum comes to see what is going on. When Charlie tells her about the ants, she starts to laugh and walks away. When she returns, she holds out a pair of boots and says ‘Where these next time, then the ants won’t crawl up your pants’

When he has made sure that all the ants are out of his boot, he goes back into the garden. There’s still one thing that he would like to try to put in front of the ants. See if they can lift that. He just has to make sure that he is not too close to the ants’ nest. The name of this character varies between thinker and explorerer and that is exactly what lies at the basis of his character. He explores his surroundings and will get fascinated by different phenomena. The story shows that thinkers can get lost in their exploration and lose sight of their surroundings. That is why Charlie gets so frightened when discovering their are ants in his boot. In this case, the reality comes too close. However, when feeling safe, he will be back to explore in no time.

Figure 10.9 Exploring the hospital

Charlie’s Protection Frame

DISTANCE FRAME Charlie’s protection frame focuses on MYSTERY keeping exploring FASCINATION on a safe distance to keep it exciting, FEAR instead of scary. This exploring behaviour is essential for the thinker, but for exploring, a safe ‘base’ is necessary. This is not easily done within a hospital. The safe base can be a parent who makes you feel safe, or a place where you feel safe. Making the bed ‘safe’ and the security that the flag offers, is therefore especially important to a thinker.

To stimulate the exploring behaviour, two of Charlie’s tools are a cup to keep anything to study and a figure of the human body, to learn about human features.

Figure 10.10 Charlie’s Tools

Off course when exploring the hospital and the abstract concepts that go with it, this can easily get too close. Especially when related to the illness of the child. To keep this at a safe distance, Charlie’s last tool are safety glasses. Looking through the glasses literally puts a distance between you and the surroundings and because the glass is coloured green, the reality gets twisted. Also creating a distance between what is happening and you.

Figure 10.12 Sophie’s Tools

10.9 Sophie - The Achiever

Sophie’s storyline in the Adventurer’s manual focusses on challenges. Sophie will not find it easy to find a challenge that she finds interesting. She is always outside riding her skateboard. The other day she saw someone performing a trick on a skateboard on telly and she wants to learn this trick too. It looked easy enough, but after a few tries, she realizes it is definitely not. But she is determined to succeed and continues. As times passes, she gets more tired and frustrated. And when her dad drives up on the runway, she realizes she has been practising for a couple of hours. Out of sheer frustration that she still hasn’t succeeded, she tossess the skateboard aside and starts crying. When her dad asks her what is going on, she explains about the stunt on her skateboard that she wanted to learn. Her dad starts to laugh and explains that it is no wonder that she hasn’t succeeded yet, her board is way too long to perform the trick on. Sophie’s tools include a game called ‘bikkelen’. Which represent her character and spirit and a roadmap on which she can map her progress.

Sophie’s Protection Frame POSSIBILITY FRAME OBSTACLE JOY

FRUSTRATION

Sophie’s protection frame focusses on keeping the hospitalization an obstacle that can be overcome. Because Sophie is such an energetic kid, she will get bored in this hospital environment pretty quick. Being restricted by the bed and for example an IV frustrates her, she can’t find a way to release her energy. To give Sophie something extra to release her energy with, within the boundaries of the hospital, one of her tools is the game ‘bikkelen’. The game is an active game and requires skills, but can be done with the hands on the bed. It is active, but within the boundaries of the hospital. Off course, there will come a moment when the game is no longer satisfying. She will want to see some progress and know where she is moving towards. Therefore, her other tool is a roadmap of the hospitalization. Together with the nursing staff or childcare worker, Sophie can map her progress on this map with stickers. After each specific procedure, the procedure is closed with a sticker on her roadmap. Making it a clear road to the end of the hospitalization

Figure 10.11 Playing ‘Bikkelen’ on the hospital bed

Figure 10.14 Looking through the dreamcatcher

10.10 Damian - The Dreamer

The storyline of Damian within the Adventurer’s manual focusses on the his talent to daydream. Damian holds his favourite rocket. He follows a specific cloud with the rocket. But while he moves through the house to the other window, he doesn’t pay attention and knocks over a vase. Upset by his own actions, Damian starts crying.Damian takes his rocket and runs to the treehouse. When he is there, he calms down slightly. He stares out of the window and notices that the clouds are like his rocket. He wonders what it will be like to ﬂy between them.... Damian wakes from his daydream about starts and rockets when his sister Sophie comes to get him. The dinner is ready. Damian hesitates to come down. When Sophie notices’ this she tells Damian to relax. Mum and dad have already glued the vase together again.

Like in the story, a ‘safe base’ is important for the dreamer to feel safe and secure enough to start dreaming. Unpleasant events will bring on the need for dreaming for the dreamer, but has to be done from a place or with a safe object. Dreaming in itself is a coping strategy for the dreamer. Dreamers can make use of certain objects that represent their dreamworld (like the rocket in the story of Damian) for a stronger connection with their dreamworld.

Damian’s Protection Frame

Damian’s protective framework is difficult. It is not as straightforward as the others. Damian’s favorite activity is to daydream. To do this, there has to be something to dream about and an incentive to get him dreaming. For this, there has to be something that he desires, an object or an experience, that he cannot have (like in the story flying among the stars) and something that reminds him of this (his rocket). That is step one. Then, at the hospital, at times the

reality will hit him and ‘burst his bubble’ so to say.

INTERACTION FRAME

DESIRE

ABSENCE

Depending on what caused the bursting SADNESS (BOREDOM this can cause from DEPRESSION) annoyance to panic. In this, the parents and childcare worker play a big role to keep the dreamer calm. In relation to this, the third aspects becomes important; it is hard to read a dreamer from the outside. Because dreamers are introvert and everything will play out in their head, people surrounding a dreamer can have trouble assessing how a dreamer is doing. By making the dreamers ‘dreams’ visual with Damian’s tool, they can be ‘discussed’ together with the childcare worker. When the childcare worker has an entrance to start communicate with the child she can use her professional skills to assess how the child is doing.

Figure 10.13 Damian’s Tools

imPRessions oF the PRototYPe

10.11 The Adventurer’s Kit and the Childcare worker

Up until now, we’ve discussed the Adventurer’s Kit from a patient point of view, but using the Adventurer’s Kit has two sides. It is also beneficiary for the childcare worker. This chapter will explain how the Adventurer’s Kit fits into the daily work of the childcare worker and will benefit her.

10.11.1 Recognising the character of the Children

When a child is hospitalized, a childcare worker will be assigned to the child. This will happen on the day of hospitalization. Before the hospitalization, childcare worker and patient have not seen eachother. However, when admitted, the childcare worker is expected to immediately support the family in their emotional well-being. Since this is very closely linked to the personal character of the patient and family, the childcare worker has to make a quick assessment. You can imagine that observing a person’s character in one eyes’ glance can be quite difficult. The Adventurer’s Kit can help the childcare worker with this. Looking at the playbehaviour of children, when playing with the Adventurer’s Kit, will give them instant information. If a child enjoys the tools of Charlie the Thinker or Damian the Dreamer, it will most likely be passive and need reassurance to tell certain stories. The Adventurer’s Kit provides the childcare worker with rich information on the child, his character and gives her touchpoints for connection with the child. At first, the assessment through the Adventurer’s Kit will be based on textbook reactions. However, when more children use the Adventurer’s Kit, the personal ‘library of reaction ’ of the childcare worker will grow. When more children use the Adventurer’s Kit, the childcare worker can compare their different reactions to eachother and assess even quicker what is the main character of the child and how to support him in this hospitalization.

10.11.2 Efficiency

One of the goals of the project was to support the childcare workers in their work. One of the main drivers was to turn up the efficiency of the preparation procedure of the childcare workers, clearing up time to support more patients. Notwithstanding the fact that the product makes it easier to assess the patient and develop a strategy to support them, the product is meant to

complement the work of the childcare workers, not replace it. A preparation will still be necessary. And although I believe that this will be easier when aware of the different characters, I also believe that the childcare workers and their work can not be replaced by a product. The work of the childcare workers will be complemented by the product.

10.11.3 Developing a Strategy

In developing a strategy for the best way to support the child and his family the childcare worker can use the character roadmap. (An example of the roadmap on the right) Firstly, the roadmap will help childcare workers to determine, when necessary, which character the child is. The roadmap also shows, related to the current work of the childcare workers, if the character is monitoring or blunting. With a short description of the character and it’s biggest pitfalls, the childcare workers is informed in a couple of seconds. To complete the roadmap, important aspects of the character in relation to the hospital visit are mentioned. For example, a thinker likes to explore, but not to close to him. The childcare worker can let him use his safety glasses to keep exploring together.

10.11.4 Communicating

You can look at the four playcharacters as a way to give parents, child and chidlcare worker the same language to communicate with eachother. A childcare worker can go into depth when communicating with parents, because they understand the reactions of their child. Events can also be explained in light of the characters.

Important touchpoints for the Kit Along the line of the hospitalization there are a few moments that are most beneficiary for the childcare worker to use the Adventurer’s Kit.

First of all there is the start and end of the hospitalization, Because the child checks in and out the childcare worker has a specific moment to start and close the experience of the hospitalization. In this moment, she can evaluate the procedure and observe how the family is feeling. At the start of the hospitalization, the kit helps her assess the child and it’s family. During the surgical operation, the childcare worker has, with the Kit, four different strategies to use to help to child through the operation.

KARAKTER WEGWIJZER START! IS HET KIND IMAGINAIR OF REALISTISCH?

IMAGINAIR

REALISTISCH

IS HET KIND ACTIEF OF PASSIEF?

ACTIEF IS HET KIND IE OF PASS F?

ACTIEF

RING

ITO MON

PASSIEF

MONITORING/ BLUNTING

RING

ITO MON

ACTIEF

PASSIEF

TING

BLUN

ACHIEVER

THINKER

Een Achiever is een actief

Een Thinker is een onderzoeker. Hij leert graag een hoop, maar zal eerst de kat uit de boom kijken.

Grootste valkuil: Een achiever zal snel boos of gefrustreerd raken, omdat een opname vaak niet een duidelijk doel, begin- & eindpunt heeft. Ook is het ziekenhuis geen plek om actief rond te rennen.

Grootste valkuil:

Belangrijk voor de PMer:

kind, dat het liefst van alles een wedstrijd maakt. Een Achiever heeft altijd een doel.

Een Achiever wil heel precies weten wat er gaat gebeuren en welke stappen er komen. Een Achiever werkt goed met een stappenplan en heel bewust een bepaalde ‘stap’ afsluiten met een Achiever zal ontzettend gewaardeerd worden.

De af te leggen- weg uit de koffer kan hierbij helpen. De Achiever voelt zich een stuk prettiger als hij het gevoel heeft dat er een helder doel is, waar hij naar toe kan werken.

Een thinker zal alle medische handelingen en apparatuur ontzettend fascinerend vinden, totdat het te dicht bij hemzelf komt, dan schiet hij in de angst.

De onderzoekersbril uit de koffer kan afstand genereren tussen datgene wat gebeurt en het kind. Hij kan hierdoor wel mee blijven kijken, zonder angstig te worden. Wanneer een kind wel angstig wordt is het creeeren van een (gevoelsmatige) afstand tussen dat wat de angst creeerde en het kind het belangrijkst voor een thinker. Op het moment dat hij het gevoel heeft dat er weer afstand is, zal hij kalmeren.

ACTOR

Een Actor is een kind dat het liefst alles uitspeelt. Dit kind gebruikt rollenspellen om alle verschillende standpunten uit te proberen.

Grootste valkuil: Actors

storten zich zonder na te denken vol enthousiasme in een nieuwe situatie. Hierdoor kunnen ze nogal eens iets tegen komen wat ze niet verwacht hadden en hierdoor in paniek raken.

Belangrijk voor de PMer:

Een actor voelt zich in zijn rol het veiligst en zal dus het liefst vanuit een rol reageren op de situatie. De rol is het schild van waarachter hij de situatie bekijkt en er op reageert. De rollen geven hem ook een ‘script’ om te reageren. Door de karakters uit de koffer te gebruiken (de egel, haas, kikker en eekhoorn) tijdens de voorbereiding op de operatie kan een actor beter communiceren wat hoe hij zich bij de situatie voelt.

DREAMER

Een Dreamer is een kind

dat het liefst in zijn eigen droomwereld zit. In de droomwereld gebeuren de meest bijzondere dingen.

Grootste valkuil: Een

dromer zal soms de connectie met de werkelijkheid missen en moeilijk te bereiken zijn. De connectie en manier waarop de dromer (niet) past in een systeem is zijn grootste valkuil.

Belangrijk voor de PMer:

Dromers zijn de moeilijkst te peilen kinderen. Omdat dromers graag in hun eigen droomwereld zitten en niet echt houden van veel communiceren, zullen zij, als 1 van de eerste gesignaleerd worden als ‘probleem’ kinderen. Dit is in het geval van dromers niet geheel terecht en de vraag is ook of zij aan extra communiceren juist wel behoefte hebben. Met de dromenverzamelaar uit de koffer kan de dromer zijn dromen delen, waaruit duidelijker opgemaakt kan worden hoe een dromer zicht daadwerkelijk voelt.

10.12 The Adventurer’s Kit and Parents Next to the children and the childcare workers, the parents play an important role in the experience of a hospitalization.

At home

Between the outpatients clinic and the hospitalization, the Emma (meaning the childcare workers) have no contact and no influence on the preparation for the hospitalization. Parents receive a flyer from the Emma filled with information on a hospitalization. However, childcare workers can not stimulate parents to read all the information and steer their preparation. Upon arrival at the Emma, childcare workers often observe that parents did not read the information. The flyer is obviously not the right medium to transfer this information at that moment in time, but next to the website, the Emma has no other option.

The Adventurer’s Kit can change this in two ways. Firstly, because the kit is handed to the child at the outpatients clinic, the kit becomes a bridge between the diagnosis and the actual hospitalization. Through the kit, the experience of the preparation at home, can be steered. Secondly, parents can roughly be divided into two groups: the group that goes looking for extensive information on the operation (google the operation, search for reactions for other parents, watch you-tube movies) and the group that doesn’t prepare for the hospitalization at all (on an information level). Parents that feel the need to look for extensive information can probably not be convinced otherwise. Parents that do not really prepare for the operation can be given an incentive to do so with their child, through the adventurer’s kit. Also, while at home, with the kit, the kit provides moments where parent and child sit down together. These moments can be used to talk together about what is going to happen. The kit provides room to start talking, so to say.

Character Road Map

Because the parents are newly introduced to the characters, this can arise some questions. Therefore the character road map will be included in the accompanying letter. In the roadmap parents can discover what kind of character their child is and how this relates to their reaction to the hospital. For example,

‘thinkers’ and ‘achievers’ will react on a more practical level on a hospitalization (why do I have to go there, how does it work, how long will it take). Whereas ‘actors’ will focus on the storyline and ‘dreamers’ are most likely to ignore it. The character roadmap gives parents these insights and lets them know what reaction from them would benefit their children. Giving parents these tools will empower them and give them a clear role during the hospitalization.

Communication

With the characters and the character roadmap, the parents and childcare worker can communicate better together. The characters are a communication tool that will help in mutual understanding. Because of the characters, childcare workers can also explain a lot more in-depth to parents. Parents know their children best, but in this new situation of a hospitalization, it can be hard to read how your child is feeling. With the kit, parents and child can also workout a communication system between them. For example, the animal tools of Pip will give the chld a medium to explain how he feels.

Active Participation

There’s one component of the Adventurer’s Kit that is maybe not that comfortable to the parents. With the Adventurer’s Kit comes active preparation and active participation in the hospitalizatioin. It requires an active attitude from parents. Something that is maybe not comfortable for all. However, with this active attitude also comes a new ‘role’ for parents. And during the interviews, it became clear that this is what most parents miss.

Back Home

When going back home, the moment of ‘checking out’ forces the parents to stop for a moment and have a final word with the childcare worker. In this moment, the childcare worker and parent can evaluate the hospitalization and give the parents some last pieces of advice on some behaviour changes that are likely to occur after a hospitalization. This moment is very important for the parents, because they are proned to walk away as fast as they can from the hospital and will never ask for the advice themselves. When forced to wait to ‘check out’ with their child, the little moment with the childcare worker is created.

KARAKTER WEGWIJZER START! IS UW KIND IMAGINAIR OF REALISTISCH?

IMAGINAIR

REALISTISCH

IS UW KIND ACTIEF OF PASSIEF?

ACTIEF IS UW KIND IE OF PASS F?

ACTIEF

PASSIEF

ACTIEF

PASSIEF

ACHIEVER

THINKER

Een Achiever is een actief

Een Thinker is een onderzoeker. Hij leert graag een hoop, maar zal eerst de kat uit de boom kijken.

Grootste valkuil: Een

Grootste valkuil:

kind, dat het liefst van alles een wedstrijd maakt. Een Achiever heeft altijd een doel.

achiever zal snel boos of gefrustreerd raken, omdat een opname vaak niet een duidelijk doel, begin- & eindpunt heeft. Ook is het ziekenhuis geen plek om actief rond te rennen.

Hoe de ouder kan helpen: Een Achiever wil heel precies weten wat er gaat gebeuren en welke stappen er komen. Een Achiever werkt goed met een stappenplan en heel bewust een bepaalde ‘stap’ afsluiten met een Achiever zal ontzettend gewaardeerd worden.

Probeer samen met uw kind, de opname in stappen op te delen en het daardoor behapbaar te maken. Zorg ervoor dat ‘stappen’ ook echt afgesloten worden. De af te leggen-weg uit de koffer kan hierbij helpen.

Een thinker zal alle medische handelingen en apparatuur ontzettend fascinerend vinden, totdat het te dicht bij hemzelf komt, dan schiet hij in de angst.

Hoe de ouder kan helpen: Thinkers willen het liefst alles weten en onderzoeken, geef ze vooral deze ruimte. Uw kind mag vragen stellen, ook aan de staf. Wanneer een kind wel angstig wordt is het creeeren van een (gevoelsmatige) afstand tussen dat wat de angst creeerde en het kind het belangrijkst voor een thinker. Op het moment dat hij het gevoel heeft dat er weer afstand is, zal hij kalmeren. De onderzoekersbril uit de koffer kan afstand genereren tussen datgene wat gebeurt en het kind. Hij kan hierdoor wel mee blijven kijken, zonder angstig te worden.

ACTOR

Een Actor is een kind dat het liefst alles uitspeelt. Dit kind gebruikt rollenspellen om alle verschillende standpunten uit te proberen.

Grootste valkuil: Actors

storten zich zonder na te denken vol enthousiasme in een nieuwe situatie. Hierdoor kunnen ze nogal eens iets tegen komen wat ze niet verwacht hadden en hierdoor in paniek raken.

Hoe de ouder kan helpen: Een actor voelt zich in zijn rol het veiligst en zal dus het liefst vanuit een rol reageren op de situatie. De rol is het schild van waarachter hij de situatie bekijkt en er op reageert. De rollen geven hem ook een ‘script’ om te reageren.

Probeer samen met uw kind en de medische staf de karakters uit de koffer te gebruiken (de egel, kikker, eekhoorn en haas) om te praten over dat wat er gebeurt.

DREAMER

Een Dreamer is een kind

dat het liefst in zijn eigen droomwereld zit. In de droomwereld gebeuren de meest bijzondere dingen.

Grootste valkuil: Een

dromer zal soms de connectie met de werkelijkheid missen en moeilijk te bereiken zijn. De connectie en manier waarop de dromer (niet) past in een systeem is zijn grootste valkuil.

Hoe de ouder kan helpen: Dromers zijn de moeilijkst te peilen kinderen. Omdat dromers graag in hun eigen droomwereld zitten en niet echt houden van veel communiceren, zullen zij, als 1 van de eerste gesignaleerd worden als ‘probleem’ kinderen. Dit is in het geval van dromers niet geheel terecht en de vraag is ook of zij aan extra communiceren juist wel behoefte hebben.

De rol van ouders is voor de dromers erg belangrijk, u kunt het best aangeven wanneer het gedrag van uw kind afwijkt van normaal.

â&#x20AC;&#x153;Adventure is not outside man; it is within.â&#x20AC;? -George Elliot-

Part V: Realisation

11. the adventuReR’s Kit at the eKZ Emma at Work

Most of the parts of the Adventurer’s Kit are of corrugated cardboard. They will distributed to the Emma in sheets of punched corrugated cardboard. Within the Emma they are processed and assembled. It so happens that the Emma has her own non-profit organisation ‘Emma at Work’ to help give chronically ill patients a job. Through Emma at Work, the Adventurer’s Kit can be assembled in-house, which will make costs considerabely lower. Also, working with Emma at Work will create more support within all layers of the Emma Children’s Hospital. (emma-at-work.nl)

Figure 11.1 Overview of Adventurer’s Kit roadmap

Distribution at the Clinic

Logistics within the Emma are the most difficult of the distribution of the Adventurer’s Kit. Within the complex of the AMC, wards serve as seperate islands. They function very well on their own, but the moment you want to let something cross the borders of the islands, it becomes difficult. This starts with determining the number of children between 3 and 6 year old that come from a certain outpatients’ clinic. There are about 38 clinics that deal with children and most of them will on occassion refer a child to a surgical operation. However, there are about 10 clinics that mostly refer children to the Emma

Children’s hospital. Every year around 4700 children between 0 and 18 years get hospitalized in the Emma. About 25% of these children is between 3 and 6 (which is 1175). My best guess is, that this translates to roughly 600 patients hospitalized for a surgical operation each year. From data of the Emma Children’s Hospital I know that from the clinic ‘Chirurgie’ around 260 patients are referred every year. When the Adventurer’s Kits are assembled they have to be divided amongst the clinics. From the clinics the doctor’s assistant will hand out the kit when a child between 3 and 6 is referred for an operation. From all different clinics, children will then be admitted into the Emma Children’s hospital and make use of the Adventurer’s Kit there.

Distribution at the Ward

Taking the kit home from the clinic before the hospitalization is part of the process. In this, the patient will get familiar with the kit and will start to see it as part of him. The kit is part of the preparation on forehand. Distributing the kit at the ward is therefore not desirable. However, in extreme situations when a child has a very sudden hospitalization or is transferred from another hospital, the need for the Adventurer’s Kit might even be bigger than with a normal hospitalization. Therefore a few of the adventurer’s Kits will be placed at the department of childcare workers. In case of a sudden hospitalization, the child will then receive a kit from the childcare workers.

Because the clinic ‘Kinderchirurgie’ is the biggest, the pilot for using the Adventurer’s Kit will start here.

12. the business model canvas

The Business Model Canvas is a new approach to business models. The canvas serves as a starting point for the actual business model. Through describing the business model in the canvas a shared understanding can be created. It is a business model concept that everybody can understand:one that facilitates description and discussion. The canvas consists of nine basic building blocks that show the logic of how a company intends to make money. The business model is like a blueprint for a strategy to be implemented through organizational structures, processes, and systems. In the complicated situation of a hospital, making the business model canvas can shed some light on the different related parties within the hospital (Osterwalder & Peigner, 2010)

The Building Blocks

An organization serves one or several customer segments

Revenue streams result from value propositions successfully offered to customers.

It seeks to solve customer problems and satisfy customer needs with value proposition

Key Resources are the assets required to offer and deliver the previously described elements...

... by performing a number of Key Activities.

Value propositions are delivered to customers through communication, distribution, and sales channels.

Some activities are outsourced and some resources are acquired outside the enterprise.

Customer Relationships are established and maintained with each Customer Segment.

The business model elements result in the cost structure.

12.3 Channels 12.1 Customer Segments

The product design of this graduation project serves several different customer segments at a different level. Below a description of the different customer segments and how they are related to the product.

The Adventurer’s Kit is distributed at the outpatient’s clinic. When it becomes clear that a surgery is needed, while visiting a specialist, the Adventurer’s Kit is distributed when making the appointment for hospitalization and visiting the anesthesiology clinic.

12.1.1 Childcare Workers

The childcare workers are the startingpoint of this graduation project and the product is intended to support them in their work. However, this is how it is profiled within the Emma Children’s Hospital. In other communication, the product is aimed at the emotional well-being of the children and their families. The benefit that the product brings to the childcare workers comes second. They are like a ghost customer segment. Both childcare worker and child and family profit from the product, but the fact that the childcare workers profit from the product is only of interest to the Emma internally.

12.1.2 Patients (Children)

Main users of the product in this project are children between three and six years old that are scheduled for a surgical operation at the Emma Children’s Hospital. The style and level of the product is accustomed to the children.

12.1.3 Parents (Caregivers)

Through the children, the parents are a secondary target group. The product is focused at the children, but will also guide the parents.

12.2 Value Proposition

12.4 Customer Relationships

The custormer relationships can be divided into two. The relationship of the childcare workers with the product is on a different level than that of the patients and the parents.

12.4.1 Childcare Workers

For the childcare workers, the Adventurer’s Kit is a tool to support them in their daily work. The product will make their work more enjoyable, but is not linked to them personally.

12.4.2 Patients & Parents

This differs from the patients & parents. The product will experience the hospitalization together with them and adapt to them personally. The relationship between patient and product is a close one. The product is a way for the childcare workers and the patiens and parents to deepen their relationship.

The Adventurer’s Kit is a product to support patients and their family in the process of a hospitalization. for a surgical operation. The key point of the product is the fact that it accepts that negative emotions come with a hospitalization, but shows that these do not necessarily have to be negative. The Adventurer’s Kit empowers you to experience negative emotions in an enjoyable way, while hospitalized.

12.5 Revenue Streams

The Adventurer’s Kit is a service provided by the Emma Children’s Hospital.

The product is unique in it’s kind and with the product, the hospital explicitly communicates that the emotional well-being of their patients is important to them. When patients will feel

The product is a service of the Emma Children’s Hospital and will therefore have no real revenue streams. The Emma Children’s Hospital will need to find a sponsoring partner to finance the production of the Adventurer’s Kit. However, there are a number of benefits, the Emma Children’s Hospital will gain when distributing the product.

12.5.1 Patient Loyalty

emotionally connected to the hospital, this will create patient loyaly. Something that is of increasing importancy in the commercialisation of the healthcare industry.

12.5.2 Efficiency

Next to this, the efficiency of the work of the childcare workers is up. The product complements their work in a way that it will clear up space for other things.

12.6 Key Resources

The main resource of the Adventurer’s Kit is corrugated cardboard. All cardboard parts of a Adventurer’s Kit can be made from one sheet of corrugated cardboard (310x160x2).

12.7.4 Folding

From one sheet of cardboard, a Kit can be folded and assembled. This will happen in co-operation with the Emma at Work. For the folding of the Kit no extra glue or adhesives are necessary. Everything can be folded into eachother. Only the extra parts that are not made of cardboard need to be added to the Kit.

12.7.5 Distributing

When assembled the Kits need to be distributed to the different outpatient clinics where 3-6 years old come in preparation to a surgery. Officially, there are 38 different outpatients clinics (medical specialties holding clinic). But there are about ten that have a clear link with surgical operation (meaning that from this clinic patients are referred to a surgical operation). These are in dutch: algemene pediatrie, cardiologie, chirurgie, keel-, neusen oorheelkunde, oncologie, oogheelkunde, orthopedie, plastische chirurgie en urologie. The Kit needs to be distributed to the clinics in relation to the number of patients that will be referred to a surgical operation. The biggest part is most likely the clinic of ‘chirurgie’. This is also the starting clinic for a pilot.

12.7 Key Activities

There are a number of key activities that are needed to distribute the Kit to the customers.

12.7.1 Producing

Firstly, the corrugated cardboad base of the Kit needs to be produced. The Kit’s are punched into sheets of cardboard and transported to the Emma Children’s Hospital.

12.7.2 Stickering (Pilot)

For the look and feel of the product, the best finish would be to overprint it. However, normal printing is not possible with corrugated cardboard, because it will soak up all the ink. Printing on corrugated cardboard is therefore more expensive. For the pilot, I therefore suggest to add an extra layer of printed paper to the cardboard, before it is punched into it’s form.

12.7.3 Adding Extra Parts

Most parts of the Adventurer’s Kit are cardboard, but there are small details that are not. (like the tale of the squirrel and the glass of the thinker’s glasses) They need to be added manually to the Kit when assembling it.

12.8 Partnerships

The Adventurer’s Kit will form a partnership with Emma at Work. Emma at Work is a nonprofit organisation that is linked to the Emma Children’s Hospital and will help chronically ill patients in finding a holiday, parttime or full-time job. Working with Emma at Work has two main benefits. Firstly, having the assembling of the kits within the hospital complex will result in less distribution costs. Everything is close by. Secondly, off course, producing the Adventurer’s kit at the Emma will generate work for the patients of the Emma. Combining efforts will create even more support within the Emma for the product.

Part VI: Evaluation For an occurrence to become an adventure, it is necessary and sufficient for one to recount it. - Jean Paul Sartre-

13. useR test at the emma

Testing at Emma

During the course of two days, all the different parts of the Adventurer’s Kit were tested at the playrooms together with a ‘playvolunteer’ and children. During the testing, the natural response to the different parts was observed and their ability to facilitate conversation. Overall it can be said that the flag and the passport and the stories are the most easily accessible for all children and were therefore the easiest to test with the children.

Separating the Parts

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Separating the different parts of the Adventurer’s Kit during the testing was done to get good feedback on all the different parts. However, looking back, it was not the best format for the testing. Because of the separation, I did not get to see how the kit would fit in the process of the hospitalization and how the childcare workers would fit it into their daily routine. Before producing the kit, this has to be tested. However, due to the separation, I did get very practical feedback on most parts.

“Het eten hier is echt niet lekker, mijn moeder maakt lekkere baklava, wist je dat? De allerlekkerste”

The Flag

The flag was received with most enthusiasm by all children. Most also enjoyed making it a piece of art. One of the four flags made, you can see on the right. The flag, I think, is a very recognizable symbol for even the youngest children and does therefore appeal to them all. The best part of testing the flag was seeing one of the boys stick it to his IV-line (on the right) and then seeing him trotting it around the ward. The flag on his IV-line made him proud.

“ Mijn vader moet zijn paspoort nog kopen, dan kunnen ook mijn moeder en broertje komen. Die zijn nu in Suriname.”

Passport

The passport only appealed to those children that were a little bit older or at least able to write their names. The drawing of a family portrait got an immediate reaction. For a childcare worker this is also a good way to get instant insight into the situation of the family. It surprised me how easy children would explain their family’s situation while drawing a family portrait. Since the passport is partly meant for the parents, their feedback was also important. However, except for a few small changes like ‘move the ‘people I met’ upfront, because it can be overlooked’, I got little comments from them.

Storylines

The reaction to the storylines was twofold. First of all, the children (especially the younger ones) loved the stories (would love any stories, probably) and immediately adapted the characters as a frame of reference (‘Ik doe het net als Pip’). Some of the parents were wondering why the stories did not have more relation to the hospital and a hospitalization procedure. They did not get the way the ‘adventure’ component would relate to being admitted into the hospital. Seeing this made it clear that, next to a general introduction, a parents introduction is also needed to guide them and explain the thoughts behind the Adventurer’s Kit.

Dreamer

During the testing it became clear that the ‘dreamer’ is still the most difficult character. As a result of the testing, the definition of the pitfalls of a dreamer and his protection frame were redefined. For a dreamer there are three important things. Firstly, the outside world (meaning the childcare worker, medical staff and parents) are not able to read what is going on in the head of a dreamer. He is the most difficult to read. Because of this and the secluded nature of the dreamer, dreamers will very easily be labeled as ‘problem children’. The distinction between being a dreamer or not wanting to talk due to a trauma experience is, on the outside, not visible to a childcare worker. Secondly, there comes a moment in the hospitalization procedure where the dreamer is no longer able to escape into his dreamworld. The reality will come to close and ‘burst his bubble’ so to say. Because so much of the dreamer happens inside his head, it is hard to find something to give guidance during this moment. Thirdly, while talking to one parent, he mentioned that somehow making dreams ‘tangible’ would help in talking about them, because it then had a physical representation. To some dreamers, this physical representation is also very important.

Character Roadmap

I had no chance to test the roadmap for the childcare workers, but did test the roadmap for parents. It became clear that the roadmap is too linear. Parents were, at times, not able to choose one of the characters. And since the roadmap shows no overlap, they were not sure what to do. Both roadmaps therefore need to be changed. An example of the new format can be found on the next page. This also relates to the comment parents had on the storylines. It needs to be more clear what the thoughts are behind the Adventurer’s Kit and it’s content.

Figure 13.1 Making the flags during testing

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14. recommendations

In this chapter, the big changes made after the testing are described. Next to that are the actions that need to be taken next. And last are the subjects that might need some more attention, before producing the kit or when making a new version.

14.1 Changes after testing Changing the roadmaps

On the right, you can see an example of the changed roadmaps. During the test it became clear that the roadmaps were too linear. Parents had trouble chosing and did not want to classify their children as one of the characters.

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In the new roadmap, the ‘outlines’ of the characters are much softer. The design recognizes that there is overlap between the characters and that this is normal. Also, when parents have trouble dividing their children in one of the characters there are also tips related to the larger categories like ‘being active/ passive’ or ‘being realistic/imaginative’. This way, parents have much more freedom in chosing the character of their children. On the back are still the descriptions and strategies per character. On the right is the example of the roadmap for the parents. The roadmap for the childcare workers will also be changed accordingly.

14.2 Next Steps More testing/Pilot

Since I was not able to test the entire ‘system’ of handing the kit at the family at the outpatients clinic and then using it during the hospital, I think this would be the first next step. When families arrive at the hospital, it will also become much more clear to the childcare workers how they can use the Adventurer’s Kit in their work. Also, I am curious whether or not every family will bring back the Adventurer’s Kit or not and to what degree they will invest energy in it, when at home.

Dreamers

For me personally, the dreamer is farthest from my own character. Designing for the dreamer

is therefore a challenge. I feel I approached the right area, but can still experment with the form. Testing this with more dreamers can also give some more insights in how to support dreamers when ‘the bubble is bursting’.

14.3 Ideas for further development There are some subjects that did not get any attention during this project. I reckon that some of the subjects might make for interesting additions to the kit.

Involving siblings/school

In the use of the Adventurer’s Kit I now imagined one parent and one child, since most of the participating families in the hospital would split their time (one parent home, one at the hospital). Also, only one parent can accompany the child to the operation room. However, adding an extra parent or child to the use, would make for an interesting dynamic. Siblings would be important to the younger children (3 years old). Explaining what is going to happen/happened at school would be important to older children (6 years old)

Aftercare roadmap

The weight of the Adventurer’s Kit is now on the front of the hospitalization procedure. You get it at the outpatients clinic, prepare for the hospitalization at home and have four strategies to guide you through the hospitalization. However, the healing process is mostly not finished when back home. With the Kit you can remember what happened, but I think there are still possibilities in improving the ‘aftercare’ component of the Adventurer’s Kit. One solution to this could be making the same kind of roadmap for parents for guiding there children through the hospitalization, only now focus on the aftercare and what are the things they need to watch out for.

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h listisc rea

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103

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Een Dre

er is een dat het lie kind fst in zijn eigen droo wereld zi m t. In de dr oomwerel gebeuren d de meest bijzondere dingen. Grootste

dromer za valkuil: Een l soms de connectie met de w erke moeilijk te lijkheid missen en bereiken zijn. De connectie en dromer (n manier waarop de iet) is zijn groo past in een systeem tste valkui l.

der kan Thinkers helpen: willen he t liefst alle weten en s onderzoe ken, geef vooral de ze ze ruimte . Uw kind vragen ste mag llen, ook Hoe de o aan de sta uder kan f. Een actor Hoe de o helpen: Wanneer vo uder kan een veiligst en elt zich in zijn rol Dromers helpen: wordt is he kind wel angstig het zal dus he zijn t creeeren t ee lie peilen kind de moeilijkst te n rol reag fst vanuit (gevoelsm van een er er en op de en. Omda atige) afsta D gr sit e t aa ro ua dr g in hun ei l is het tie. omers nd tussen dat wat de gen droom an achter hij schild van waarzitten en wereld kind het be gst creeerde en he de situatie niet t la bekijkt en op reagee veel comm echt houden van thinker. O ngrijkst voor een rt er . un D e rollen ge iceren, zu p ook een ‘sc 1 van de llen zij, al het gevoel het moment dat hi eers ript’ om te ven hem s j he reageren. worden al te gesignaleerd afstand is, eft dat er weer s ‘problee zal hij ka m Pr D ’ obeer sam kinderen. it is in he lmeren. t en ge met uw ki val van dr medische niet gehe nd en de omers De onderz sta el terecht oe en de vraa koffer te ge f de karakters uit de ook of zij kan afstand kersbril uit de koffe g is aan extra bruiken (d r genereren co ee e ju eg m kh ist wel be municeren el, kikker oorn en ha datgene w hoefte he , as) om te at gebeur tussen ov bb er en pr da . t at en het kind t wat er ge Hij kan hi en erdoor w beurt. . De rol va el mee bl n ouders ijven kijken, zo is vo mers erg nder angs belangrijk, or de drotig te u kunt he worden. aangeven t best wanneer het gedrag uw kind af van wijkt van normaal.

Figure 14.1 The new character roadmap

15. personal evaluation

15.1 Assignment

Let me start by saying that I firmly believe every student should look for their own graduation assignment. During my graduation I have been able to observe and compare my own graduation project with some others. Off course it depends on your own attitude and that of your company, but starting your own graduation project brings such a different set of relationships and energy to the table.

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For me having an assignment, meant that I had already convinced the company of the value in me doing a graduation project for them. I had already fought some of the battles on forehand, which cleared up time to completely focus on the project. Also, because it was my own assignment, it was a cause, I stood behind for 100%. I was worried, whether or not I would be able to stand firm, within this vast hospital environment. This resulted in a slow start of the assignment, but as the project proceded, my stand (within the assigment) grew. The most important lesson, in relation to the assignment, I learned, is the importance of the outlining of the assignment. At the start of the assignment, I found the formulating of the assignment tedious. Whilst towards the end of the project, I regularly looked at the assignment of the project to define the boundaries of my activities.

15.2 Ambitions

Before I started with my graduation project, I had some ambitions that I wanted to meet. Below I will reflect on them all.

15.2.1 Doing it on my own

95% of the work done in the master program, is done in teamwork. Especially the larger projects. I did not realize this, before I started this project, but we are programmed for teamwork at our faculty. I know what my strengths and weaknessess are when working in a team and I know how to overcome them. I know, like a million, tactics to resolve

problems within a group (though they donâ&#x20AC;&#x2122;t always work) And then, all of a sudden, you are alone. It is very strange starting a project when you donâ&#x20AC;&#x2122;t actually know whether you have the abilities to carry the weight of it. Proving to myself that I was able to carry a project like this on my own, was probably my biggest ambition. Starting this is confronting, since it is 100% your own responsibility and I feel we have had too little preparation for this. But then again, being thrown into a big project like this on my own has been extremely good for me. I feel I got to comfortable in my role within groups and did not push myself to do new things. I almost immediately fell into the role within a group I feel comfortable with and know, just because this was the most convenient. Now, I know that I love the extra pressure and excitement of doing this on my own. There are definitely a lot of areas where I need to work on. For example, at IO you get a bit spoiled, in explaining what you mean. Talking to fellow students, I can stop mid-sentence without explicitly saying what I mean and they still get my message. When discussing with a company, this is not the case. I got stuck in this a couple of times. I have to learn to formulate, exactly that, what I want to say. But thatâ&#x20AC;&#x2122;s just a matter of experience and doing it over and over again.

15.2.2 A company without previous experience with IDE.

When looking for an assignment, I deliberately wanted to look for a company with no previous experience with IDE (or little). I believe that it are often the companies that are unaware of IDE that can benefit most from a designer doing a project there. To me, this is also more interesting. In this case, the results of doing this were twofold. From my company I got an enormous amount of trust and freedom to do this my way. Which made me stronger in doing this on my own. However, with doing a project with a company that is new to a designing approach, comes a large part of communica-

tion. I did not foresee the amount of time this would take within the project.

15.2.2 A Tangible Product

In relation to doing it on my own, I absolutely wanted to make a tangible product. My strengths are in concepting and 2D designing, not 3D. With this graduation, I wanted to see if I was able to push further than the concepting of a product. Making and prototyping a product, I did succeed in this. However, if I’m absolutely honest, it did become somewhat of a cross-over product, where I could use my knowledge of 2D printing. I do love how the suitcase turned out, but prototyping and for example knowledge on materials are areas in which I want to develop myself further.

15.2.4 The Product Realised

The biggest award of a graduation project would be when the product will be realised. At this moment, whether or not the product will be realised is not yet sure, but what I consider a huge compliment is the fact that whether or not the product will produced is a matter of practical issues (logistics and finance). Hopefully, after my graduation, I will get the opportunity to start a pilot.

15.2.5 A Masterpiece

This is the hardest ambition to reflect on, by far. When I started, I convinced myself that this would be my masterpiece, the project that would launch me into the real world of design and give me room to start my own little design agency. Did I succeed? I honestly don’t know. After all these years, judging my own work is still a blind spot. I can say that the project is interesting, the combination of characters and protective frames unique and the product and it’s form fit the hospital. But whether or not I will reflect on it as a masterpiece is something only time can tell.

15.3 The role of a Designer

The role of a designer is a very strange one. You have to be part of the company you are designing for, to understand what it is they do and work together with them on a product concept. However, you also have to be able to step out of the company and maintain the overview and enough distance between you and the company to see what solution would fit best. As mentioned before, I’ve never had to take on this role on my own. And this one foot in the company, one foot outside of the compa-

ny is a very strange feeling. One day you are on your own little island, the next day you are part of a large company, with all it’s hierarchy and departments and then you are back on your little island. Confusing at times (is it me, them, we?), but it makes you persistent.

15.4 Communication

At times, it felt like most of the graduation project consisted of communicating. Working with a lot of relations and parties within a graduation project results in a big part of relationmanagement during the project. All these relations are necessary to create the support within the company and firmly embed the design.

15.4.1 Within the Emma

Communication within the Emma was, at times, difficult. Being in a hospital requires a whole new level of flexibility, that took time to get used to. All childcare workers were available for me to go to, however they are there for the patients. So, when being paged, this is always priority number one. It is completely understandable, but from my point of view at times confusing and frustrating. Secondly, at our faculty, most doors are always open. It is always possible to talk to tutors. In the Emma I was surprised by the strict hierarchic structure of the company. I had to learn to differentiate between my (tone of) communication very quickly.

15.4.2 To the outside world

I have to say, I am slightly disappointed that our line of work is completely unknown to most people outside our faculty. Every conversation you have as a designer will lose, at least a minute or ten on explaining what it is that I do. Off course explaining this over and over agaian made me aware of that what is important and the core of our education. But at the same time it is extremely frustrating that this takes up so much of the time. I was aware of this and encountered it a couple of times when doing an intership at Muzus, but it never really sunk in how much time this actually takes.

15.4.3 Cardboard Specialist

One of my favorite moments during the project was visiting a cardboard specialist and discussing the prototype. Their expertise made it possible to improve the concept within an hour.

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I especially loved the experimenting with different kinds of cardboards and folding mechanisms to create the best combination of form and strength. Doing this kind of consulting with a specialist company was new to me. I enjoyed it, but I know that I have to gain some more confidence in my role as a designer. I have to find a balance between the expertise of the specialist and my own vision as a designer.

15.5 User-Test

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The part of my graduation project that I am most disappointed with, is the first user-test. To test all the different parts of the kit, I split it up and tested the different parts seperately. This was necessary to get some feedback on all different parts, but resulted in me doing the user-test with children and the ‘playvolunteer’ of the ward. And not as I would hoped, in me observing how the childcare workers would use it. Upon starting the usertest in the hospital, I realized that the relation between the kit and the childcare workers was underdeveloped and not ready. I therefore decided to first test the separate parts and work on the relation between the childcare workers and the kit. I got a lot from the usertest, but differently then expected. Thankfully, there is room for a second usertest.

15.6 Timeframe

The timeframe of a graduation project is absolutely ridiculous. If you want to do it right (and being an achiever, I want to do it right), it is not possible within the give time. Any project with this amount of people participation is impossible to fit into a tight schedule. I am glad I put my personal timeframe at ‘before christmas’, because otherwise, you just can keep on going. Especially with an interesting case like this, you can always find some more aspects to consider. Having a personal deadline then helps in prioritizing.

15.7 Design for Emotion

I still don’t know whether I should call it a method, philosophy or a simple viewpoint, but whatever it is, it works for me. After the elective had sparked my inspiration, this niche of design continued to spark during my graduation. It is a way of working and a line of thought that is in sync with mine. And I should have learned this earlier in my master.

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Glossary

glossary In order of appearance in the report:

Childcare worker childcare workers are part of the ‘psychosociale zorg’ department of the Emma Children’s Department. They have a pedagogic background and are responsible for the Emotional and psychological well-being of the children between 3months and 12 years and their families. Academic Hospital An academic hospital is a hospital linked to a university. Because of this connection, academic hospitals perform more research and are often specialised in a certain medical area. Topreferent care/ Topclinical care topreferent or topclinical care (3rd line care) refers to all care given within an academic hospital. Care within the Emma Children’s hospital is topreferent care. This means children are always enter the Emma via a referral of a specialist.

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Personas are fictional characters used to explain the relation between person and product. Personas are mostly used to look at the use of a product through the eyes of different types of users. Each type of user will in this represent a persona. Infographics are a graphic way of structuring information. On an infographic, text and images are combined to tell the story. Acute conditions are medical conditions that require immediate medical attention and hospitalization. Most acute patients enter the hospital through the ER. Elective conditions are medical conditions that require attention, but not immediate. Conditions are not life-threatening. When a conditions is elective, patients will be placed on the waiting list. Most hospitalizations withing the Emma are elective patients. Chronical conditions are medical conditions that continue during the course of at least six months. Maslow’s Pyramid is a pyramid of needs in which personal needs are ranged in an hierarchical order. The pyramids is introduced in 1943 by Abraham Maslow. Latent needs are sleeping needs that will become active when triggered (by a certain situation) Mostly, you are not aware of your own latent needs, until they become active.

Healing Environments refer to an overall name for environments that stimulate healing of patients. The science of healing environments looks for elements in environments that can contribute to healing. Blunting Children that are blunting, are evasive when it comes to the medical treatment. Monitoring Children that are monitoring are the exact opposite of children that are blunting, they need to know every step of the procedure and need to be told what is happening all the time. Emotion Managment in this report refers to two different meanings: 1) on how the childcare worker manages the overall emotion level on a ward 2) on how patients manage their own emotions Telic when in a telic state, activities with a specific purpose are done. When in a telic state you work towards a specific goal. This goal is the reason for the activity. Paratelic when in a paratelic state, one can lose himself in the activity. Being in a paratelic state refers to doing the activity, for the sake of the activity. There is not a specific goal attached to it. Protective Frames A protective framework can be seen as a safety zone which enables you to experience negative emotions in an enjoyable way. The frame assures you there is no real threat to you. Complex qualities represent a combination of a positive and negative emotion that form a rich experience through the use of a protective framework. Playcharacters are an adaptation of the learning styles of Kolb, focussing on the playbehaviour of children.

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References

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REFERENCES

Apter, Michael J. (1982), The Experience of Motivation: The Theory of Psychological Reversals, New York: Academic Press. Arnold, C. (2010), Understanding Schemas and Emotion in Early Childhood, Sage publications Ltd. Bolt, Adri (2011) Bestrijding angst en pijn bij kinderen moet anders, kind & ziekenhuis 12-15

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Bolt, Adri (2011) Digizorg op de kinderafdeling, Kind & Ziekenhuis, 12-15 Broeksma, Alice (2011) Een trauma door het ziekenhuis, Kind & Ziekenhuis, 8-10 Conley, Chip (2011) Getting more mojo from maslow, designmind issue 13, 75-79 Demir, Erdem, Desmet, Pieter M.A., Hekkert, Paul (2009) Appraisal patterns of emotions in humanproduct interaction, International Journal of Design Vol. 3, No. 2 41-51 Desmet, P.M.A., van Erp, J., & Hu, C. (2008) Enriching Fokkinga, Steven, F. (2010), Design for rich experience: involving the full spectrum of user emotions in the design process, master thesis Gielen, Mathieu A. (2010) Essential concepts in toy design education: aimlessness, empathy and play value.

International Journal of Arts and Technology, 3:1 4-16. Gielen, Mathieu A. (2009) Design for Childrenâ&#x20AC;&#x2122;s Play and Learning Reader Gielen, Mathieu A. (2008) Exploring the childâ&#x20AC;&#x2122;s mind - Contextmapping research with children Digital Creativity, 19:3, 174-184. Hill, D. (2010) Emotionomics: Leveraging Emotions for Business Success, Kogan Page Ltd Knutz, Eva and Markussen, Thomas (2011) Measuring and communicating emotions through game design Latour, Jos M. et al (2011) A qualitive study exploring the experiences of parents of children admitted to seven dutch pediatric intensive care units, Intensive care med, 37: 319-325 Lee, Fred (2004) If Disney ran your hospital, 9 1/2 things you would do differently, Health Forum Markussen, Thomas (2009) Bloody Robots as emotional design: how emotional sturctures may change expectations of technology use in hospitals, International Journal of Design Vol.3 No.2 27-39 McGrath, Jacqueline M., Samra, Haifa A., Kenner, Carole (2011) Family-Centered Developmental care Practices and Research: What will the next century bring? Journal of

perinatal & neonatal nursing, Volume 25, number 2, 165-170 Nederpelt, Ivo (2005) Ontwerp voor de patientenkamer vanuit de beleving van de patient, Master Thesis Osterwalder, A & Peigner, Y. (2010), Business Model Generation: A Handbook for visionaires, game changers, and challengers, John Wiley & Sons, Ltd. Richardson, Laura S. (2010) Shaping the Future of play, designmind issue 13, 43-45 Silvia, Paul J. (2009) Looking past pleasure: Anger, confusion, disgust, pride, suprise, and other unusual aesthetic emotions, Psychology of Aesthetics, creativity and the Arts, Vol.3, no.1 48-51 Sleeswijk-Visser, F. (2009), Bringing every day life of people into design, Delft University Press Sternberg, Esther M. (2010) Healing Spaces: The Science of Place and Well-Being, The Belknap Press Weerdesteijn, J.M.W., Gielen, M.A., Desmet, P.M.A. (2004) Playing with body language and emotions. International Council for Childrenâ&#x20AC;&#x2122;s Play - World Play Conference 2004. Weisseflog, Ernst J. et al (2011) Participation of haemato-oncological patients in medical decision making and their confidence in decisions, european journal of cancer care, vol. 20, 534-538 Symposium Creating Care ontwerpers in de zorg

Presentatie - Pedagogisch medewerkers, Emma Kinderziekenhuis AMC www.thisisservicedesignthinking.com, the customer journey canvas, accessed August 2, 2011 http://www.amc.nl/?pid=7604 poliklinieken kinderen, accessed november 30, 2011 http://issuu.com/amcamsterdam/ docs/opname-in-het-emmakinderziekenhuis, accessed, augustus 15, 2011 http://www.emma-at-work.nl/, accessed, november 13, 2011

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Abstract

aBstract

The situation

When a child (3 months - 12yrs) needs a surgical operation, he will be supported by childcare workers during hospitalization at the Emma. This childcare worker is responsible for the emotional and psychological wellbeing of the child and it’s family, during the hospitalization. She will therefore prepare and guide the family before, during and after a surgical operation.

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Right now, the childcare workers are the only ones responsible for the emotional well-being of the child and it’s close family. When the childcare workers are (due to timepressure and budget cuts) no longer able to support all the children, they are, as a result, no longer aware of their emotional well-being. Because a hospitalization can be a stressful event, this can create a (health)risk for both child and parent. Resulting in psychological problems after the hospitalization. With the Adventurer’s Kit the childcare worker can support child and family in preparing and processing a surgical operation. This Kit will guide the family in the entire process of the surgical operation

The Theory

To make a hospitalization an adventure there are two main points of interest.

Protective Frames

Firstly, the fact that a scary story or a rollercoaster is an enjoyable experience, is not without reason. It is the fact that they are within a specific frame of reference that makes them enjoyable. You can enjoy and action movie and find explosions thrilling, whereas if this were to happen to you in real life, this wouldn’t quite be as enjoyable. Watching and experiencing it through a movie is safe, you know it is just a movie. Experiencing fear through a movie, is one example of a protective framework. A protective framework can be seen as a safety zone which enables you to experience negative emotions in an enjoyable way. The frame assures you there is no real threat to you. Creating a protection framework while being hospitalized, can turn the emotions experienced while being there into a positive experience.

Playcharacters

Secondly, emotional responses are very personal.

Everyone will react on a situation differently. But to be able to design something for the personal emotion management of the patient, the emotional experiences need to be classified. To be able to do this, the ‘Play Character model (Gielen, 2010) based on the Learning Styles by Kolb was used.

The Adventurer’s Kit; the design

Firstly, the hospitalization is part of a period of illness, that is much wider than just the hospitalization. A hospitalization in the Emma Children’s Hospital is part of a period of research and medical treatments, new impressions and excitement. A period that does not go by unnoticed. A hospitalization is an adventure, and you can use all the help you can get while in it.

The suitcase itself fits the overall theme of ‘going on an adventure’. And enables the child to take their own suitcase.

The passport is partly to mark the begin and end of the hospitalization and partly for the parents to mark special moments during hospitalization. The ﬂag is very important to create a safe place in a strange environment. With the flag, the children can make the hospitalbed a bit more familiar and safe. The adventurer’s manual tells the stories of the Beentjes family. These stories are the introduction to the four toys related to the play characters. While reading, the children can decide on their preference. The four toys related to the four play characters represent four coping strategies to survive and make a hospitalization more enjoyable.

Going through this adventure is not easy.The Adventurer’s kit can empower child, parents and childcare workers (when hospitalized) to communicate and experience the hospitalization in a positive manner.

BEENTJES E I L I M A F E D

Because the period of illness is so much wider than the hospitalization, The Adventurer’s Kit is handed to the children at the outpatient clinic. That way it becomes part of the bigger experience. Within the suitcase you can find a flag and passport, the adventurer’s manual with stories of the Beentjes Family and 4 toys related to the 4 playcharacters. They all relate to different parts of the hospitalization and offer support to the child when needed.

DAMIAN

- dreamer

SOPHIE - achiever PIP - actor

CHARLIE - thinker

Figure 10.4 The four play characters

PIP’S DOMINANT PLAY CHARACTER IS ACTOR. This means that Pip likes to act out everything. He acts on ‘gut’ instinct rather than analysing a situation and will rely on others to provide him with information. One of his favorite toys is his ‘mouse’ suit. When wearing it, he feels good and safe. CHARLIE’S DOMINANT PLAY CHARACTER IS THINKER. Charlie is curious and is and not afraid, but careful in his approach. He will analyse a lot and approach situations from a logical point of view. Ideas and concepts are more important than people. SOPHIE’S DOMINANT PLAY CHARACTER IS ACHIEVER. This means she is that kind of kid that loves to go on a quest and master skills. Sophie is energetic by nature and always up for trying something new. She loves competition and learning new things. In this she can be slightly obsessive, she has to continue until she has mastered the skill. Sophie always wants people around her. It is no fun, to compete on your own. DAMIAN’S DOMINANT PLAY CHARACTER IS DREAMER. This means Damian is quite literally a dreamer. He is very creative and imaginative and will create his own version of reality. Damian loves stories and drawing. He is, by nature, very calm and will need a lot of incentive to become more active. In his playing behaviour, he will mostly be playing on his own.

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