Invisible Children: A Co-Design Process by Seth Dubin

ABSTRACT This paper presents a co-‐design process consisting of qualitative and ethnographically oriented studies of everyday life and work practice and co-‐design methods. It concerns the relationship between parent and child, and the specific focus of this paper is the communication situation in a family, when a parent is sick for an extended period of time. Keywords Co-‐design methods, involving users, parent-‐children relationship, hospitalization, IT solutions

TABLE OF CONTENTS 1. INTRODUCTION 1.1 THE DESIGN TEAM 1.2 WHAT IS CO-‐DESIGN? 1.3 WHAT IS THE SCOPE OF THE COURSE PROJECT? 1.4 WHAT IS THE SCOPE OF OUR PROJECT? 1.5 WHO IS THE TARGET GROUP? 1.6 HYPOTHESIS 1.7 WORKING RESEARCH QUESTIONS 1.8 OVERALL RESEARCH QUESTION

2 2 2 2 3 3 3 4 4

2. RESEARCH PLAN

3. METHODS 3.1 INTERVIEW 3.2 FUTURE WORKSHOP 3.3 VIDEO SKETCHING

6 6 7 9

4. ANALYSIS 4.1 INTERVIEWS 4.2 FUTURE WORKSHOP 4.3 VIDEO SKETCHING

9 9 11 12

5. FINDINGS

6. DESIGN OUTCOME

7. EVALUATION

8. REFERENCES

1. INTRODUCTION

By encouraging the users to participate in the design process, we are empowering them with the ability to improve different aspects of their lives with the use of digital technologies.

1.1 THE DESIGN TEAM 1.3 WHAT IS THE SCOPE OF THE COURSE PROJECT?

Theis Kamper, Jonas W. Hansen, Andreas M. Poulsen, Seth Dubin and Signe H. Hansen

When determining the scope of this project, we were given five limitations to follow:

1.2 WHAT IS CO-‐DESIGN?

1. The concept must relate to problems in the relationship between parents and their children or children and their parents (at all ages).

The concept behind the co-‐design process is that every person has a unique perspective, which can only be accurately explained through the context of his or her lives (Finken, 2003, p. 66-‐67). Blomberg (1993) argues how she believes designers should use an ethnographic approach. Co-‐design is a mixture of ethnography and design. Blomberg (1993) explains how ethnography field methods relate to the design process, and that “through extensive contact with the people studied ethnographers develop a descriptive understanding of the observed behaviors” (p. 124). Kuniavsky (2003) explains how user research is a process you have to do before the design phase, because it is important to understand the impact the design has on its audience in advance (p. 3). When designers try to design for others, stereotypes and misconceptions often muddle the ideal solution. Therefore, any design process should include different methods to involve the user in order to gain an inside perspective on the lives, wants, and needs of the users. We, as designers, are given the challenge of designing a process to effectively include users at the forefront of the design.

Because this obstruction is something that everyone can relate to in some form or fashion, it is a perfect example of how stereotypes and misconceptions can sway designers into doing what they think is right. Every group, however, has a different and very specific focus on their projects, which will highlight various family dynamics and perspectives that are not common to us. Therefore, we will have to use co-‐design methods to gain insight into the various situations concerning the relationship between parents and children. 2. You have to pick 3 different methods; one of these has to be a co-‐ design method. During the course, we have been introduced to several co-‐design processes that have proven successful in gaining insight into the users’ lives. Many of these methods use unconventional ways of unearthing subtleties in personal dynamics, which would otherwise be overlooked and untouched. These methods have different

1.5 WHO IS THE TARGET GROUP?

affordances, so it was necessary to carefully choose suitable methods for our design process. Some methods might have proven useful and effective for our research, but had to be eliminated from our research plan, as ethics and logistics created many obstacles.

Our target group is families where at least one of the parents is hospitalized for extended periods of time. Further than that we increased the target group to only include children who still rely on their parents (ages 6-‐17), but of course is still able to understand the situation and discuss the issues and emotions they are experiencing.

3. Each group has to have minimum five participants. 4. You are not to be part of the target group.

1.6 HYPOTHESIS

Again, this limitation prevents us from being muddled with biases and misconceptions. Therefore, we were able to step into the issues of the target group with open minds and no expectations.

Children rely on their parents both practically (food, clothing, shelter) and emotionally (comfort, love, support). When a parent is torn from the regular routine that the family is accustomed to, the relationship is affected on both practical and emotional levels.

5. Each group must elect a project leader for 6 sessions, and then swap the role.

Who’s going to pick the kids up from school and drive them to karate practice? Who is going to cook dinner? Who is going to tuck the kids in at night and read them a bedtime story?

1.4 WHAT IS THE SCOPE OF OUR PROJECT? We found it interesting to look at the relationship between children and sick parents. What seems difficult in this unique family dynamic is the communication situation -‐ how does a family deal with the emotionally heavy circumstances and communicate appropriately and sensitively with each other? The reason we found this interesting is because of the change in the communication situation.

These are some of the concerns that might affect the family when a parent becomes hospitalized (Børn og unge i sorg, 2011, p. 1): • • • • • • •

Uncertainties around diagnosis Concerns for the future Difficulty seeing parents suffer Fear of one's parent dying Increased need for physical proximity Greater responsibility at home Limitations in daily life

• •

Lack of support from the system Conflicting needs of the various family members

2. RESEARCH PLAN When beginning a research process there are advantages to making it formal (Kuniavsky, 2003, p. 57). It provides some certain and specific goals, and it provides a schedule to accomplish these goals. Therefore it also gives results when most needed (Kuniavsky, 2003, p. 57). The entire research process was iterative and did not follow a strict planned order. Instead, we were able to use new knowledge gained from each method and use it in other instances of the same method or with different methods. Overall, our process can be explained through the DECIDE framework (Sharp et al., 2002) of:

1.7 WORKING RESEARCH QUESTIONS During the course of our research, we tried to explore the following questions, which we thought to be the biggest challenges during a parent’s leave of absence, especially in the area of communication. • • • • • •

How has the parent's extended absence affected daily life of the children? How has one parent's absence affected the daily routine of the other parent in relation to parenting the children? How has the family maintained contact with each other? Has the children's development and social life been affected? How open were the parents when discussing the sickness/situation with their children? After the parent has been released, has a normal relationship continued?

• • • • • •

Determine the g oals The overall goal of our research was to develop ideas for a new technology that could aid children with sick parents in maintaining a healthy relationship with each other despite the changes in the family dynamics. There are two things to consider about the research goal: “why you’re doing the research and how your results will be implemented” (Kuniavsky, 2003, p. 57-‐58). We were doing this research to help children with sick parents bridge the gap in any communication barriers that exist

1.8 OVERALL RESEARCH QUESTION How can the difficult communication situation between parent and children during a parent’s sickness be improved using some kind of digital technology?

Determine the goals Explore the questions Choose the evaluation approach and methods Identify the practical issues Decide how to deal with the ethical issues Evaluate, analyse, interpret, and present the data

in long-‐term separation, and it should culminate as a technology to help with communication issues.

network and beginning research with health care professionals. Although they are not explicitly part of our target group, they have much experience working with the patients and being around their families. We also tried advertising our research on hospital info boards, but with no success. We concluded that families in the hospital are there because they are dealing with health problems and did not have time to deal with extra stress in their lives. We were also interested in speaking with families who had recovered, so the hospital was not much help. We also faced practical issues with patient-‐doctor confidentiality laws in which the hospitals and counselling centres were not allowed to give us contact with a family, and were often unwilling to work with us to reach them other ways.

Explore the q uestions It is difficult for a child to cope with the absence of a parent, as it is also difficult for a parent to know that he or she is unavailable to his or her children. So, how does the daily life of these children change? What is it like visiting the hospital? How do parents decide to inform their children about the situation? How does daily life change? We had many questions like these when approaching the topic, and it was important to constantly remember these when conducting research. Choose the e valuation a pproach a nd m ethods Our research plan includes some different methods to achieve the goal of improving communication among the family. First, we needed to garner insights on the conditions of their daily lives and routines. We would have gained a lot by conducting diary studies and probe kits, however because of time and ethical obstacles, we were forced to choose a different route. Trade-‐offs like these are a necessary misfortune of any research process. Instead, we conducted a qualitative interview with a nurse, a qualitative interview with an affected family, a future workshop with a family, and video sketching to explore the situations on ourselves to try to gain some empathy for the user. Identify the p ractical issues When designing research, issues must be considered such as access to our target group and time constraints. To begin, because our target group is very specific and affects only a small percentage of society, it was going to be difficult to find families. We solved this by contacting a nurses’

Decide h ow to d eal w ith the e thical issues Our topic is a sensitive one in that health is a personal subject. Especially with long-‐term hospitalizations, the health issues had to be serious. This is the reason why we wanted to work with families who had been in the situation, but has since recovered. We thought it would be easier for them to talk about their feelings during the illness, since it is a sensitive subject, which they have survived. Also, working with children, we were unsure of what the parents chose to tell their children, and how the children handled it emotionally, and we did not want to impose on the parents’ decisions. We solved this issue by talking to children (young adults) who had been in this situation in the past and have since matured or coped with it. Kuniavsky (2003) states: “Unfortunately, life is never ideal. Thus, the process of determining the important issues can be a research project in itself” (p. 59). Indeed, discovering the issues was “a project in itself”. The solution for the user starts with uncovering the problems, and uncovering

the problems was an in-‐depth exploration of the issues in the daily lives of those affected. We gained suggestions and ideas to improve the family dynamics and children’s communication with their sick parents, which must be further developed to meet reality. Therefore, we feel confident that with the issues uncovered, we can design solutions for the users.

with just a general idea of how the interview should play out, and then probe around when we stumbled upon something interesting. We considered both an informal interview, which is more conversational than structured, and a guided interview that has more focus and direction but still contains some degree of freedom (Blomberg, Burrell and Guest; 2003). We ended up with the guided interview since we need to ensure we cover certain areas during the interview (e.g. our working research questions). Since we have to come up with a product/solution to a problem, there must be guidelines for the interview to be successful.

3. METHODS 3.1 INTERVIEW The interview represents a qualitative approach to our subjects and lets us get in-‐depth with the participants of the interview. The situation with being long term hospitalized as a parent is a delicate and complex thing. To get a proper understanding of the everyday life and the challenges it involves, we need to get very familiar with the subjects so they feel comfortable describing in detail what that new situation meant for them. The interviewer works directly with the respondent and needs to react and follow up upon what the interviewee says. This direct contact makes it a very personal empirical method.

Another possibility is interview by phone. Our main focus is on ideally, two-‐three families, which can be both difficult and time consuming to get in touch with. We are looking into what type of knowledge hospital staff can provide to our project. Nurses, doctors and other medical professionals has the potential of being of great value to us, due to their expertise and the fact that they are not directly emotionally involved, may give us some other angles that we would not get from the families. The medical staff can probably provide quick answers that do not require their presence and us meeting them face-‐to-‐face. The phone allows us to gather information from many people very fast.

The personal interview form is more immediate and spontaneous than interview by mail. When the subject does not have time to reflect about the answers, the interviewer has more to go from, and can guide the interview towards the type of answers the group seeks (Blomberg, Burrell and Guest; 2003). This is especially useful for us to have the direct contact so we can follow up on the answers we get. Since we did not know yet what we specifically were looking for, we could approach the families

The key interviews with the families should ideally take place in their homes or another place where they can relate to their surroundings and objects that can remind them of certain situations (Blomberg, Burrell and Guest, 2003, p. 971). We will of course explain the purpose of the interview and make sure they understand that we will respect the confidentiality they expect. We will record the interview and have it transcribed so we can use quotes in the assignment.

We chose to analyse the interviews with the meaning condensation method, which allows us to parse the interview and extract the core essence of the dialogue. There are five steps to this method (Kvale, 1996, p. 192-‐196):

(Bødker, Kensing, and Simonsen; 2004; p. 137). When the family is together in the workshop, it can be easier to find out what communication problems that both sides experienced, and therefore put focus on them, and come up with a solution together with the family.

1. The interview is listened to in its entirety to gain an overall sense of it

The future workshop is different from the interview and a group interview in the way, that the users are much more involved in this method, because it is the participants that make up the solutions based on the discussion created throughout the workshop, and not the interviewers that do so based on the data they collect. The interviewer’s only job is to control the workshop, and when it is done, try and implement the useful ideas the participants created together at the workshop in the design process (Bødker, Kensing, and Simonsen; 2004; p. 137-‐138). It is much more up to the users, to generate the content that is shaping the workshop, and we are only there to facilitate the discussions.

2. “Natural meaning” quotations, or main points, are extracted 3. The researcher unbiased assigns a theme to the natural meaning 4. The meaning units are discussed in relation to the research’s original purpose 5. The themes are merged to form one condensed statement of what was learned.

The future workshop has both its ups and downs. One of the big downs in the future workshop, is that when you conduct one in a company, all the participants might not have the same interests in the outcome of the workshop (Bødker, Kensing, and Simonsen; 2004; p. 138), but our project does not possess this difficulty because our overall goal is for families to have a better communication, which is a positive thing for all the family members.

3.2 FUTURE WORKSHOP We have also decided to use the co-‐design method “future workshop” in our research. This method has been chosen to get feedback and inspiration from not only the people that have been sick, but also the family members who also have been deeply affected by the situation. This method helps us in achieving our goal to create a better communication between the sick person and their family, because the future workshop involves the whole family, and they can therefore give us feedback from both perspectives of the case at the same time, where they together can suggest changes to situations they have experience and found unsatisfactory, which is the intention of the future workshop

On the other side there is a lot of positives, like getting a shared understanding of the situation we are looking into, and also see how people who have experienced it perceive the situation, and in this workshop create a plan to improve on the unsatisfactorily situation we are dealing with, together with the users (Bødker, Kensing, and Simonsen; 2004; p. 138).

Our future workshop should take place where the family will feel comfortable, which is common for many methods. Being in a comfortable and familiar place, will most certainly make the participants open more up to the interviewer. These places could be at their home or another place where they have been before, so they are familiar with the place and people there. We do not intent to do a workshop with more families at once, as that might create a lot of tension, and in the end some of the families might not have contributed at all, or opened up as much as hoped. It should take place at a familiar and comfortable place, because this creates a good atmosphere for the family, and they do not feel misplaced. If they felt misplaced, they might end up closing down and hold useful information back, which they might have shared in a more comfortable environment.

This phase is a good way for us to get an overlook at the workshop, and make it go smooth when it is done. Planning is everything. Critique In this phase the participants is asked to critique the current situation. This can be done by turn or in the open. It would be best to do it in the open, because that creates a way better dynamic, but if it does not happen naturally, it can go by turn. In our project we want the participants to critique the situations, where the communication was difficult during their sickness run. This critique can end up in a good discussion that is useful for the rest of the workshop. This phase is to get the participants to get a common understanding of what the real problems are, and that they are not alone in their critique of the situations.

The other option we have is to make a workshop with nurses or doctors, because they have a lot of knowledge in the area. That workshop would be at the nurses or doctors workplace, as this again give them the home field advantages, and make them more likely to open up to us, and gives us more usable feedback.

Fantasy In this phase the participants are asked to come up with solutions, and they are allowed to dream in this phase. They do not have to think realistic in this phase, but just come up with solutions. They can come up with anything to make a solution. It is very important to get creative here, and the designer can help if the participants hinder each other’s creativity.

Bødker, Kensing, and Simonsen (2004) has divided the future workshop into five phases: preparation, critique, fantasy, realization and follow-‐up: Preparation In this phase it is the designers, who have to pick a theme for the workshop that the users have to work in. For our group that could be “A new technology to help families communicate better doing the sickness”. It is also in this phase we decide where and when the workshop takes place, and also make up a structure to run the workshop.

This phase is to get the creativity going, and to get the participants to feel that there is a solution to the problem somehow. Realization In this phase the participants selects the solutions from the previous phase that they liked the best, and those solutions are discussed if they

can be realized with the current tools that are available, or if a new tool/technology is needed. After this the most unrealistic solutions are thrown away, and there is created plans for the few remaining ones on how to realize them.

be too far in the process of deciding on a final product or concept. Future ethnography is an idea of involving the users in the video sketch, and then watches their experience of the idea/product. This differs from conventional ethnography, where you visit and observe user. It relates to the future workshop, where the users are in focus, and you want to see them improvise in situation.

This phase takes the creativity that is build up in the previous phase, and hopefully at this time a good group dynamic is created, and some good plans can be created for the situation at hand.

Generally speaking, it is not the content itself, which is important in the connection with a video sketch. Ylirisku and Buur (2007) writes: "It is not the video per se that creates the impact, but rather how its role is constructed” (p. 142).

Follow-‐up In this phase we the designers write a summary on the critique created in the second phase, then the visions created in the third, and then the plans created in the fourth. Also the designers are now responsible for carrying out the plans created at the workshop.

4. ANALYSIS

This phase ends what the users, have created at the workshop, and it is now up to the designers to use what they think can be used in their design project.

4.1 INTERVIEWS The interviews we conducted provided much insight into the daily lives of our target group. We did not have any expectations going into the interviews, so this method proved ideal for pinpointing central themes and concerns of the families.

3.3 VIDEO SKETCHING Envisioning The Future by Salu Ylirisku & Jacob Buur (2007), describes some key concepts related to video sketching: Improvisation and the future ethnography.

We conducted two interviews: one with a nurse and one with a girl who lived with a hospitalized father for many years.

The improvisation concept is an important part of the video sketching process, as it gives an opportunity to see how you have behaved in unpredictable and unprepared challenges. It may be difficult to improvise if you already have many expectations for the finished product. Therefore, it is important to do the sketching with an open mind, and not

The first interview was with the nurse Janne (see appendix 1 for transcription and meaning condensation) at Neurological Department at Hillerød Hospital, who regularly deals with patients with brain cancer.

Janne discusses the difficulties that patients, spouses, and children experience while visiting the sick patient in the hospital. She also discusses the role nurses currently play in this process, and what she would like to see changed in the hospital department. Central themes include family frustrations, separation anxiety, family awareness, and professional duties.

support. As said, Janne was very interested in the kids, and she thinks it is best when the child is aware of what is going on. Therefore, she also believes the hospitals should be more child and family friendly, and to be aware of the family should be an official topic to be included in the patient reports. In the interview with Grace a lot of useful information was uncovered. What this interview gave us was insights into living with a sick dad for several years and constant hospital visits. When a parent is that sick the hospital visits becomes a high priority. Grace missed school time and other important things to be with her dad in bad periods. Grace discusses how there is a huge difference in how her parents explained the situation, because the sick parent might not have the energy to clarify the situation, and the healthy parent might be the better option because he/she often understands the situation better than the sick parent.

The second interview was with Grace (see appendix 2 for transcription and meaning condensation) who lives in Atlanta, Georgia. The interview was conducted via Skype and transcribed. Grace is now 21 years old, but has been dealing with her father’s heart conditions and hospitalizations since she was 8 years old. Grace attends Georgia Tech in Atlanta, but her family lives 45 km away in Fayetteville, Georgia. Grace discusses growing up with constant hospital visits, and how it has affected her everyday life. She discusses the difficulties of being a child in the hospital, being invisible, without a say, and without having anything to do. She constantly had to fit the hospital into her daily routine. Some of the central themes include the hospital environment, total family commitment, the nurses’ place in the family dynamics, communication confusions, and possible IT solutions.

As with Janne’s interview Grace talks about the hospitals and the options it offers for kids when they visit. Grace does not describe them as hostile environments, but there is just nothing to do for the kids other than talking with the sick parent, and that might not always be what the kids need. Sometimes they just need to identify the hospital visits with some kind of fun where they can play instead of only identifying it with sickness. Grace explains how her mother wanted her kids to be near her when they were at the hospital, so she would not have to worry about them as well. In this example, when Grace visits the hospital she of course went there for her father, but she did not see the nurses, and did not get any kind of relationship with them. Both Janne and Grace see this as a problem -‐ there should be more contact between the nurses and the relatives.

Summary o f interviews Janne works with brain cancer and therefore her patients are mentally impaired. She is interested in the child perspective and talks about how the children are similar to the cognitively impaired patients, because they do not really understand what is happening. In the interview she talks about how the family lives might be affected, for example that there is a shift of partner responsibilities, and that the healthy parent often do not want help, even though the nurses are also available to the families for

When people are this sick they get transferred around a lot, and sometimes it can be hard to find out where your sick parent are located in the hospital, which was a big frustration for Grace. Nurses did not always have time to help the family when they were visiting, and that also led to big frustrations, but the biggest one was still locating her father. Grace talks about different possible IT solutions that could be helpful; for example a GPS on his bed to help both nurses and families to find the patient.

nodes removed. After the operation, a long period of time with chemotherapy and radiotherapy followed. The C ritique P hase The mother and daughter unintentionally started the critique phase while still in the introductory phase. The first issue that came to the participants’ minds were the initial messages from the public hospital. The problem here was that the message did not sound very serious, as the mother said, "It doesn't matter if I get the test done today or in a week, so I will do it after our vacation.” The second issue was that because of the cancer, she decided to "call in sick" for the entire time she was in treatment, which her workplace did not like and after a while her boss actually fired her. Sadly, we cannot really use these issues for more than inspiration since we want to work on the relationship between the sick parent and his/her children. The next theme we talked about was the daily life during treatment. Here their problems seemed to revolve around the mom not acting like a sick person. She would still do the tasks she used to do in their home, and because she had used a cooling hat to freeze the hair cells in order to protect them during chemotherapy, she still had her hair and did not look sick either. This made it harder for her children to be aware of her illness, since they could forget that she was sick. Another problem in their daily life was that the mother felt alone in the sense that she did not know anyone close to her who had experienced what it was like to have cancer so it was hard for her to talk about it with her close family and friends.

4.2 FUTURE WORKSHOP Our future workshop was held with only two participants: a mother, Lisbeth and her daughter, Camilla. We started the workshop by having the participants introduce themselves and briefly going through the period of time when the mother was sick. We did this to establish a reference point for all of the facilitators and the participants. During this section we found out that seven years ago, when the mother was 47 and her kids were 15 and 17 (Camilla has a big sister, Julie), she had been diagnosed with breast cancer and within 14 days of getting the diagnosis, she went through the operation and had an entire breast and the lymph Future workshop with Lisbeth (to the left) and Camilla (to the right)

During the critique phase, the participants concluded that they actually did not remember a lot of bad experiences, apart from the illness. This made it hard for them to come up with examples, so we decided to finish

the critique phase by having the participants list four positive things about the experience:

some technological reminder, for example an SMS service from the hospital, reminding the children to take care of their parent.

Small intimate hospital Fast service Friendly nurses Only surrounded by other people in the same situation (at the hospital)

The future workshop definitely moved the group towards the design outcome. The workshop revealed several similarities between the wishes of all our participants. Lisbeth and Camilla were very talkative and a lot of information came out of it. Even though it is far from all the inputs we have used directly in our report, their ideas and critiques helped us understand the situation as a whole.

• • • •

The F antasy P hase After the list of positive things we started the fantasy phase. The first thing that came to their mind was having an evening with information about the surgery and the illness. They also thought that having nurses take a talk with the children and the spouse about how they feel was a good idea. This would help the relationship between the parent and the child by making it easier to talk about what is going to happen, since, as the participants said, it is often hard to remember all the information you get as a patient. Another idea they talked about was having some sort of technological reminder that their mother was sick, which was something they mentioned that they kind of forgot since she did not loose her hair. The R ealization P hase They had three ideas that they thought were the best. Two of the ideas revolved around getting more information about the illness. One way would be from more talks with the nurses and another way would be having the initial talk with the doctor recorded. The third idea was having

4.3 VIDEO SKETCHING After the future workshop we had a video sketching session within the group to explore some different scenarios we became aware of in our research. We enacted three scenarios: 1. The problem with finding your way around big hospitals and getting help from nurses and staff, 2. The difficulty with remembering information the doctor tells you, and 3. The problem with sterile surroundings at the hospital. 1. The problem with finding your way around big hospitals and get help from nurses and staff: We had three actors: one nurse and two visitors. The setup was that the cameraman hid a probe symbolising the father at the hospital. Then the visitors should try to find the father with help from a nurse who did not know where he was either.

5. FINDINGS

We experienced the difficulties with communicating with a nurse without any knowledge. The result was that the two visitors went to the information desk, but there were no one there at the moment. Then they tried to find a map (the nurse told them a room, but the nurse did not know where that was), instead of asking someone else. We had an improvised discussion about always trying to find out things on your own at first, and then ask someone else if no success.

Common themes revolving around “invisible children” emerged in our interviews with Janne and Grace and in our future workshop with Camilla and Lisbeth. They all seemed to focus on the strange new lifestyle that is suddenly imposed on the family. The importance of keeping a regular flow of communication between the family members was stressed, as it is the only way to keep the entire family informed and on the same page. As it is currently the case, children are often left out and shielded from hearing familial issues which create a feeling of “invisible children”, which the nurse Janne passionately wants to reverse. The children are affected emotionally sometimes just as much as the sick parent is affected physically. Both Grace and Janne believe that the hospital did not serve as a welcoming place for children, which they thought ought to be fixed. When parents are confined to the hospital for extended periods of time, there is no other choice but to have the children visit. It was also discovered that the hospital professionals are not adequately prepared or trained to deal with children, further creating the feeling of isolation.

2. The difficulty with remembering information the doctor tells you: Again we had three actors: two parents and a doctor (who later on played the son as well). The setup was a consultation with the parents and the doctor, where the doctor explains the mother’s illness in many fancy medical words. Afterwards, the parents come home to the son, and tries to explain it all to him. We experienced a lot of difficulties with remembering the diagnosis. Even though the doctor made it all up, and it was not too difficult, it was still hard to remember, so we can only experience how hard it must be in a real situation where the patient is actually sick and worried.

These were findings from the two interviews with Janne and Grace, but in the future workshop with Camilla and Lisbeth it was not the case. They found the hospital and staff very welcoming, and there was a nice atmosphere at the hospital. They believed it was because it was a small hospital with the same nurses on their case, and it was only breast cancer patients hospitalized. What could be improved, according to the daughter Camilla, was the information from doctors to children before the surgery. She felt like she had no idea what was about to happen with her mom, and she would have liked some more ‘child-‐friendly’ information, besides pamphlets, about her mother’s illness.

3. The problem with sterile surroundings at the hospital: Here we only dealt with two actors, and the sketch was two separate pieces. We did a comparison (improvised description) of the environment at ITU and the environment in a cosy and comfortable living room. We did not experience anything concrete about hospital environments, but we tried to put words on feelings when in sterile environments compared to homelike environment.

When a parent is suddenly absent over a period of time, some changes will occur in the daily lives and routines of the family. For Grace, the time her father spent in the hospital was so long that it became ‘normal’ to consider her father at the hospital. For Camilla and Lisbeth it was different. Lisbeth was not hospitalized for a long period, so the visiting only took place after the operation when Lisbeth got her breast removed.

hospital like Janne and Grace, it is not possible to create the same atmosphere, but Janne stressed that improving the environment on her part of the hospital could open up for new ways of meeting the children. Communication is a keyword as well. All the participants agreed that much information is lost during the doctor/patient/family conversation. It is a lot to comprehend all the information given, and the children could feel frustrated with their parent not being able to retell the situation properly. Moreover there is a request from the families to know where the patient is when being moved around the hospital. That helps avoiding going to visit in vain, but also to be kept in the loop if everything is progressing as planned.

Afterwards, when the chemotherapy began, they experienced some communication barriers. Because Lisbeth was not admitted in the hospital and she did not lose her hair, the family sometimes forgot that she was very sick -‐ as she explained, with cancer it is almost as if you get more sick after you are in fact healthy because of all the different treatments.

The findings seem solid, as there are common features from two families in different situations and from a nurse who brings another perspective to it. In our design outcome we will strive to address all the problems mentioned by our empiric participants.

Bringing the children along for doctors’ conversation might have helped them realize the seriousness of the matter and put less stress on the family as a whole. With a father who is shy of feelings and confrontations, and a mother intent on not showing her sickness, it can be very hard for the children to understand what is really going on. Having a professional telling them what is going on would have kept them in the needed loop (Børn og unge i sorg, 2011, p. 12) instead of the parents holding it back.

6. DESIGN OUTCOME The interviews and the future workshop all enriched us with great findings and good ideas for a final design outcome. Our final idea is to develop an interface that will support various features to make it easier for the children and the whole family to understand and follow the sick parent throughout the hospital stay. This central database is designed specifically for families so that everyone will be on the same page. In this way, nothing will be lost in communication, as Grace said was often a problem when receiving information from her brothers who received that

After conducting both the interviews and the future workshop with different users, an interesting and confirming finding is that every case is indeed very different, but still we see commonalities which makes this research meaningful to us. The need for a better environment at the hospital is definitely present. Lisbeth and Camilla had a much better experience with the smaller, cosier hospital, with the same staff creating safe surroundings. Being at a big

information from their mother who received that information from the nurse.

might make time for them, or she can inform the family in advance to come at another time or make them aware that she will not be available.

The service would be designed to work on computer kiosks around the hospital for those who don’t have a smart phone, as well as on smart phone applications for those who do. It is important that the system is easily accessible by all family members. Perhaps this would not be an ideal system for small children under 10, however it would put the specialized medical terms in layman’s terms so that adults would know how to explain complex conditions to their children.

In Denmark, everyone has access to his or her own medical profile via ‘sundhed.dk’, so a similar platform is already here, but we would like to make it more child-‐friendly and understandable. Lisbeth explained how she thought it was nice to have the opportunity to look at her patient journal, but she did not understand half of the medical expressions. If the period of hospitalization is long like for Grace’s dad, it could also be nice to look back, and see how far they have come. The interface should work as a diary, and it should be possible to write notes, and upload pictures of happy moments to remember.

The interface should work as an online patient journal with all relevant information. For example, it would include a diagnosis in a language average people understand so it can be explained to children. It would also have a section with schedules for the patient so the family knows what he or she is doing everyday, and a service to be able to find the patient in the hospital. A treatments section would display information about the treatment, how it is done, what it should do, and when it is over. An online forum to have conversation within the family and a separate forum for asking questions to nurses and doctors would also serve useful to the service.

The most important thing is that it should be updated frequently, even though it might be difficult in a labour like that. Both the nurse and the children emphasize how important it is to have the conversations and acknowledgment of the relatives. Therefore, we hope digitalizing and automatizing some of it could help the process. For instance, when the family visits the patient, the nurses might not have time for the family, but if there is a schedule that says the family is coming today the nurse

Above is a sketch of how an interface like this could look like, and the keywords of this design outcome are really that it should be ‘understandable’ and easy to access.

7. EVALUATION

everything we were looking for, so we were able to extract much meaning from her insights. Also, we finally found a family to hold a future workshop with. Signe talked to her friend Camilla and her mom, who recovered from breast cancer some years ago, and they agreed to help us with the project. It was not ideal that we knew the informers, but at that moment it was better than nothing. The future workshop went well, and the participants had some beneficial discussions.

The most significant difficulty during this course has been finding a family, probably because we decided to work with a very sensitive subject. We started by contacting large institutions such as Kræftens Bekæmpelse and Rigshospitalet. We were only met with dead ends due to confidentiality issues. After several attempts to get in touch with families with long terms illness, we finally got an interview with a nurse at Hillerød hospital.

Overall, we had many difficulties succeeding our research plan as planned, but in the end it worked out anyways. The two family interviews we did both came to be through our personal networks. Another time we might start out working those more, since some topics can prove very challenging to address through organizations and professionals that deal with it on a daily basis.

One of our mistakes was when we finally found one informer; we were slow to move on. The problem was that Janne, the nurse, worked with brain cancer where the chance of survival is more or less non-‐existent. Therefore, through Janne, we could not get in touch with any families who had actually recovered from the illness. Since our topic is so sensitive already, we wanted a family that recovered fully so we would not stir additional emotions. We hovered too long on the dilemma of having a professional contact we did not know how to use. We ended up harvesting the information from Janne’s interview without further contact with her patients and daily routines. This worked out, however, as we were able to learn a lot and apply it to our interviews with others.

After several failed attempts to get in contact with a Danish family, we almost gave up and started thinking about other options. For example: doing a future workshop with a healthy family and making them imagine a scenario where the parent was hospitalized based on themes taken from previous interviews. This was an inconvenient time in the project, but in the last second Seth made contact with a girl he knows in the US named Grace who most of her life had a sick father. Grace’s story had

8. REFERENCES

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