Mmb researchkit final by Megan Wilson

Research Plan & Kit The Future of Pediatric Care | Hemodialysis Capstone

Last Revised Thursday, April 13, 2017

Brandon Caruso, Michael Frampton, and Megan Wilson

Overview

How might the hemodialysis experience be improved for the children receiving in-hospital treatment?

Summary “Pediatrics is the specialty of medical science

five times a week. This time commitment creates

concerned with the physical, mental, and social

time away from home, school (Maslow et al., 2011),

health of children from birth to young adulthood,”

and social life for children with chronic illness.

(Rimsza et al., 2015). Though pediatric care is a vast

Children with chronic illness experience a feeling

problem space, patients who receive hemodialysis

of distance and isolation from their peers and a lost

will be the main focus of our user research. Children

sense of normalcy (Liu et al., 2001), this additional

who suffer from chronic kidney failure require the

time consumption because of dialysis increases this

need to receive hemodialysis while they wait for a

distance from a “normal life”.

renal (kidney) transplant (Fischbach et al., 2005). Dialysis units within hospitals contain many potential areas for intervention that could directly affect patient care.

The team wishes to investigate how to make the dialysis unit a more comfortable and enjoyable experience for pediatric patients. This research plan outlines our investigation into understanding the

Depending on the health of the patient, time spent

dialysis unit to help us identify possible areas for

in the dialysis unit varies. An average session is

design intervention in the future.

between three and five hours and occurs three to

Research Questions

Participant Profile

What activities do patients engage in during dialysis

Children (8 Participants)

treatment? What are both the limitations and encouraged activities for dialysis patients? What are the patient’s attitudes towards dialysis?

Age 4-20 English Speaking Currently receiving dialysis at Seattle Children’s Hospital

Where does dialysis fit into a patient’s schedule? What social interactions do dialysis patients engage in during their treatment? How does undergoing dialysis affect the self-image and sense of normalcy for patients? How do patient’s attitudes change as they become more experienced with treatments?

Staff Nurses ( 2 Participants ) Has worked in the unit for more than 6 months. They directly work with patients and spend most of their time with patients, administering and monitoring treatment.

Literature Review In exploring the literature related to pediatric

also miss significant amounts of work and quality

care, there was a focus on the technological,

time with their other children while caring for their

environmental and social aspects related to the care

chronically ill child (Heaton et al., 2005).

received in the hospital. It was quickly reaffirmed that chronic illness introduces great difficulties for children trying to maintain a sense of normalcy (Liu et al., 2015).

Understanding their own medical records is another challenge faced by dialysis patients. A system was created to help dialysis patients keep track of and analyze their health records. This system was made

Some patients donâ&#x20AC;&#x2122;t simply get to leave the hospital

accessible through mobile and web platforms.

free of their condition. Frequent visits to a hospital,

The system was designed not only to be easily

such as patients receiving dialysis, can be a stressful

accessible, but also contained data visualizations

experience for children. Having a chronic illness,

to make health records more easily understood

like renal failure, can require treatments that can

by the patients. Creating a more understandable

be an isolating and lonely experience for many

and accessible interface can improve health self-

children (Garcia-Sanjuan et al., 2016). Giving unique

management (Sota et al., 2011).

opportunities for children in this situations to communicate is vital for their personal well-being.

Hemodialysis has been evolving over the last twenty years due to global technological advancement. This

Due to the time commitment associated with

technological advancement has created reduced

dialysis, children spend less time in the classroom.

rates of hypotensive episodes, headaches, and pain

It has been shown that young adults who had

from fistula puncture. Technological advancement

childhood-onset chronic illness were shown to

has also made hemodialysis machines quicker and

fare worse in educational, vocational, and income

more efficient at filtering blood (Fischbach et al.,

outcomes. The absenteeism created from having a

2005). Understanding the constraints equipment

chronic illness negatively affects school and college

pose on a design solution associated with dialysis

readiness, therefore affecting graduation, vocational,

is important.

and income outcomes (Maslow et al., 2011).

When designing for children (8-14) the prevalent

Many children who suffer from chronic illness benefit

method of design is participatory design. This

from life supporting technologies. These technology

allows for the children to directly take part in the

dependent children demand a lot of attention and

design process. In order to maximize engagement

create many constraints for their families. Being

of children in the design process, one must also

technology dependent can cause children to miss

remember the child-development theory to gauge

significant amounts of school and time with other

the mental, emotional, and physical capabilities

children, creating an isolating environment. Parents

of a child (Giannakos et al., 2013). Some specific

Literature Review cont. methods include: co-creating with children,

(Bers et al., 2001). It is important to understand the

online research panels, focus groups, and using

conflicting intentions between stakeholders within

friendship pairs. Designing in pairs allows for

this space. Virtual spaces are complex systems and

children to be more creative, confident, and make

take effort to design, implement and maintain. Other

decisions (Naranjo-Bock, 2011). Ethics also plays

design solutions are as simple as an interactive

a very important role when designing for children

display. Interactive displays within waiting rooms

especially with chronic illness. One must weigh the

can create mediums for children to play with that

benefits of research versus taking the energy and

are infection-free. Interactive displays also act as

time away from a sick child (Robertson et al., 2013).

distractions, therefore reducing anxiety for the users

There have been attempts to design in this space.

(Biddiss et al., 2011).

One such example is Zoraâ&#x20AC;&#x201D;a virtual community

The intent of this research plan is to understand

piloted in a dialysis unit. It was created by MIT Media

the design problem space that is the pediatric

Lab, in conjunction with Boston Childrenâ&#x20AC;&#x2122;s Hospital,

dialysis unit. We hope that our research will create a

to allow pediatric patients to explore identity

potential design solution that benefits current and

through a virtual avatar. This design provided insight

future children receiving dialysis. Building off the

on the different needs of the people involved within

work examined in this literature review, we hope to

a dialysis unit. The nurses wanted Zora to help

further investigate and understand the experience of

patients understand their renal disease, while the

children receiving in-hospital hemodialysis.

patients wanted a place to escape from their illness

Study Overview The study will take place over a series of sessions. Each session will be associated with different activities. The specific time of these session will be determined at a future date once confirmed with the dialysis unit.

Fly on the Wall

Draw the Experience (7-8 Participants)

Full day observation of the dialysis unit.

Using drawing as a medium to interview children,

Associated Research Questions What activities do patients engage in during dialysis treatment? What social interactions do dialysis patients engage in during their treatment? What are both the limitations and encouraged activities for dialysis patients?

the team will ask various questions that participants will answer through drawing and short verbal discussions of the drawings. Associated Research Questions What activities do patients engage in during dialysis treatment? What are the patient’s attitudes towards dialysis? Where does dialysis fit into a patient’s schedule?

Contextual Inquiry (2-3 Participants) A staff nurse will be followed for a complete treatment. A short semi structured interview will follow the contextual inquiry. Associated Research Questions How do patient’s attitudes change as they become more experienced with treatments? What activities do patients engage in during dialysis treatment? What are both the limitations and encouraged activities for dialysis patients? What social interactions do dialysis patients engage in during their treatment?

What social interactions do dialysis patients engage in during their treatment? How does undergoing dialysis affect the selfimage and sense of normalcy for patients? How do patient’s attitudes change as they become more experienced with treatments?

Guided Tour - Completed A tour of Seattle Children’s Hospital. Including playrooms (indoor and outdoor), dialysis unit, inpatient rooms, clinic areas, emergency room, and intensive care unit.

Recruiting Participants A letter will be sent to the 14 patients that are currently receiving dialysis treatments at Seattle Childrenâ&#x20AC;&#x2122;s Hospital. The letter will be an open call to any individual who would like to participate in the research activities defined in this plan. The letter will also discuss the observation activities that will be taking place. Staff Nurses from the Seattle Childrenâ&#x20AC;&#x2122;s Hospital dialysis unit will also be contacted by letter. See Appendix B: Letters.

References Bers, M. U., Gonzalez-Heydrich, J., Raches, D., & DeMaso, D. R. 2001. Zora: a pilot virtual community in the pediatric dialysis unit. In Studies in health technology and informatics.. 800-804. Biddiss, Elaine and McKeever, Patricia and Shea, Geoffrey 2011. The Art of Waiting – Interactive displays in healthcare settings. In: CHI 2011, 7 May 2011, Vancouver, Canada. Catalina Naranjo-Bock. 2011. Approaches to User Research When Designing for Children. (March 2011). Retrieved March 15, 2017 from http://www.uxmatters.com/mt/archives/2011/03/approaches-to-userresearch-when-designing-for-children.php\ Fernando Garcia-Sanjuan, Javier Jaen, and Sandra Jurdi. 2016. Towards Encouraging Communication in Hospitalized Children through Multi-Tablet Activities. In Proceedings of the XVII International Conference on Human Computer Interaction (Interacción ‘16), Lourdes Moreno, Ernesto Jesús de la Rubia Cuestas, Víctor Manuel Ruiz Penichet, and Francisco J. García-Peñalvo (Eds.). ACM, New York, NY, USA, , Article 29 , 4 pages. DOI: https://doi.org/10.1145/2998626.2998658 Fischbach, M., Edefonti, A., Schröder, C. et al. 2005. Pediatr Nephrol. 20: 1054. doi:10.1007/s00467-0051876-y Heaton, J., Noyes, J., Sloper, P. and Shah. R. 2005. Families’ experiences of caring for technology-dependent children: a temporal perspective. Health & Social Care in the Community, 13: 441–450. doi:10.1111/j.13652524.2005.00571.x Judy Robertson and Madeline Balaam. 2013. Designing for the needs of child patients in hospital settings. In Proceedings of the 12th International Conference on Interaction Design and Children (IDC ‘13). ACM, New York, NY, USA, 625-627. DOI=http://dx.doi.org/10.1145/2485760.2485890 Leslie S. Liu, Kori M. Inkpen, and Wanda Pratt. 2015. “I’m Not Like My Friends”: Understanding How Children with a Chronic Illness Use Technology to Maintain Normalcy. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ‘15). ACM, New York, NY, USA, 1527-1539. DOI: http://dx.doi.org/10.1145/2675133.2675201 Maslow, G. R., Haydon, A., McRee, A. L., Ford, C. A., & Halpern, C. T. 2011. Growing up with a chronic illness: Social success, educational/vocational distress. Journal of Adolescent Health, 49(2), 206-212.

Continues on Next Page

References cont. Michail N. Giannakos and Letizia Jaccheri. 2013. Designing creative activities for children: the importance of collaboration and the threat of losing control. In Proceedings of the 12th International Conference on Interaction Design and Children (IDC â&#x20AC;&#x2DC;13). ACM, New York, NY, USA, 336-339. DOI=http://dx.doi. org/10.1145/2485760.2485827 Rimsza, M. E., Hotaling, A. J., Keown, M. E., Marcin, J. P., Moskowitz, W. B., Sigrest, T. D., & Simon, H. K. 2015. Definition of a Pediatrician. Pediatrics, 135(4), 780-781. Yasuhiko Sota, Keisuke Yamamoto, Masahito Hirakawa, Souichiro Doi, and Yasuhisa Yamamoto. 2011. Support of self-management for chronic kidney failure patients. In Proceedings of the 2011 Visual Information Communication - International Symposium (VINCI â&#x20AC;&#x2DC;11). ACM, New York, NY, USA , Article 6 , 7 pages. DOI=http://dx.doi.org/10.1145/2016656.2016662

Activity Descriptions

Fly On the Wall The team will be spending a full day at the dialysis

throughout the unit. Two team members will be

unit observing patients as they go through

focused on observing an individual patient and

treatment. This includes observing them entering

taking notes for the length of their treatment. The

the unit until they leave the unit.

third team member will be observing the overall

Fly on the Wall will help us understand the experience that a patient goes through as they enter the dialysis unit, receive dialysis, and leave the unit. The focus of this activity is to learn the behaviors of patients during dialysis treatment. We also want to consider the interactions between the different individuals that are involved with the treatment or present in the unit during treatment (i.e. parents, nurses, other patients). Using Mark Baskingerâ&#x20AC;&#x2122;s AEIOU worksheets as

unit during that time. The team will rotate after each patientâ&#x20AC;&#x2122;s treatment is complete. Photos of the unit will be taken at the end of the session when it is empty. Concerns: This is an active dialysis unit so the team will need to make sure not to be a hindrance to the operation of the unit. It will be rather obvious that the unit is being observed, we hope that this doesnâ&#x20AC;&#x2122;t impact the natural behaviors in the unit.

an observation guide, the team will be spread

Roles

Supplies

Patient Observers (2 Team Members)

Observer Guide - See AEIOU Worksheet.

Focus on the same patient from different areas of

Notebook

the unit.

Pencil

Unit Observer (1 Team Member) Focus on the overall atmosphere of the unit.

DSLR Camera Checklist - See Checklist A.

Fly on the Wall - Session Plan Observation (2 Patients Treatments) Two team members will be focused on observing an individual patient using a worksheet (See AEIOU Worksheet). The third team member will be observing the overall unit during that time using the same worksheet (See AEIOU Worksheet). The team will rotate observation roles between each patient. Mid-Day Discussion (60 mins) Team will break for lunch and briefly discuss what they have seen thus far. Observation (2 Patients Treatments) Two team members will be focused on observing an individual patient using the worksheet (See AEIOU Worksheet). The third team member will be observing the overall unit during that time using the worksheet (See AEIOU Worksheet). The team will rotate observation roles between each patient. End of Day De-Brief (45 mins) Team will come together and discuss what they saw, highlights from the day, and gather materials. This should happen in a private area outside of the unit. Photos of the unit should be taken when there are not patients in the unit (See Checklist A). NOTE: All times and numbers of patients are subject to change depending on treatment schedules.

Draw the Experience Looking to engage young children in a semi-

their treatment. We want to know how dialysis fits

structured interview seemed like an impossible task

into their everyday life. We would like to know how

and for some participants might seem intimidating.

they view the dialysis unit. We are also looking to

We look to drawing as a medium to document their

see how they have changed in respects to gaining

attitudes towards their dialysis treatment.

experience with the treatment over time.

Depending on age, the facilitator can tailor the

Concerns:

session to better accommodate the individual participants. Two versions of most of the documents are created to help adjust for age. Though drawing will be the main medium for

The team is concerned that patients might get tired or bored and lose the energy to engage in the activity before and during. We are also concerned about parents influencing the kids in their responses.

communication and externalization of thoughts, the participants will be asked to show and tell their drawings after completing them. We hope to see what things they do or would enjoy doing during

Roles

Supplies

Facilitator

Facilitator Guide - See Facilitator Guide B.

In charge of running the session and main person

Individual Crayon Boxes

interacting with the patient.

Individual Colored Pencil Boxes

Observer Documenting patients responses to questions, behavioral cues, and drawing explanations.

Pencil Sharpener Small Post-it Notes Notebook Pencils DSLR Camera Audio Recording Device

Draw the Experience - Session Plan Introduction (2 mins) Facilitator will introduce themselves and the observer. They will discuss with the patient and guardian the purpose of the session and what to expect with the session. See Facilitator Guide B. Consent and Assent (2 mins) Facilitator will discuss the consent form with guardian and child. The consent form will be signed prior to session by parent and assent from the child must be given before starting the session. See Appendix C: Consent and Assent Documents. Warm-Up (15 mins) - See Activity Sheet B.1. An age appropriate warm-up activity will be done to â&#x20AC;&#x153;break the iceâ&#x20AC;?. Patients 2-11: The facilitator will asked the participant to draw their favorite animal as a warm-up. The facilitator and note taker should also draw their favorite animal. After ten minutes, everyone will share their drawings. Patients 12-20: The facilitator will start by asking them to talk about themselves and share their interests. The facilitator is encouraged to share their interests too. Activity (~ 40 mins) After the warm up, 4 activities will be completed followed by a final reflection. Depending on age, activities can be modified to make the activity more engaging and meaningful for participant. The facilitator will use small sticky notes to annotate the drawings. An image will be taken of each drawing with and without annotations. Before and After (Activity Sheet B.2-1) / Weekly Planner (Activity Sheet B.2-2) Depending on age, participants will be asked to draw and discuss the activities they do outside of the dialysis unit. Ages 2-11: Before and After. Ages 12 -20: Weekly Planner. Magic Bag (Activity Sheet B.3-1, B.3-2) Depending on the age, participants will be asked to either draw or discuss the items use and activities they do during dialysis and what items or activities they would like to have or do during treatment. Continues on Next Page

Draw the Experience - Session Plan cont. Activity cont. (~ 40 mins) Draw yourself in dialysis room (Activity Sheet B.4) Regardless of age, participants will be asked to draw their interpretation of dialysis unit. They will discuss their drawing with facilitator. Draw Good Day, Bad Day (Activity Sheet B.5) Regardless of age, participants will be asked to discuss a good day at the dialysis unit and a bad day at the dialysis unit. Reflection Participants will be asked to reflection on their feelings and experiences on their first day of dialysis and how that has changed over time. Conclusion (5 mins) The Facilitator will thank the participant for spending time and give them the drawing they completed . A quick recap about the session, distributing contact information and clarifying any questions will be done with the guardian and participant.

NOTE: It is up to the Facilitator to determine if activity is appropriate for the participant. The facilitator should also judge if the session is becoming too long for the participant and recommend a break or stop the session. The participant can also stop at anytime or can decide just to talk with the facilitator (especially for older participants). The participant will also set the pace for the activities, the facilitator just needs to be considering the participants overall time receiving treatment.

Contextual Inquiry The nursing staff has a huge impact on the patient

patients while they are at the unit. This will not only

experience. We are hoping to understand their

be observed during the inquiry but also reflected

role in this experience further. Through Contextual

upon in a post interview. We want to understand

Inquiry, the team will follow a nurse through their

of the patients experience and we cannot fully

daily routine and see what they do to prepare for a

understand that unless we consider the role of the

treatment, administer a treatment and complete a

nurse and the treatment itself.

treatment. We hope to identify the tasks they complete, tools they use, individuals they interact with. We also want to understand the nurseâ&#x20AC;&#x2122;s interaction with the

Concerns: The team is concerned that since the nurses are being shadowed they will act differently.

Roles

Supplies

Facilitator

Facilitator Guide - See Facilitator Guide C.

In charge of running the session and main person

Observer Guide - See Observer Guide C.

interacting with the nurse.

Notebook

Observer Documenting nurse responses to questions and things the nurse does.

Pencil Audio Recording Device

Contextual Inquiry - Session Plan Introduction (5 mins) Facilitator will introduce themselves and the observer. They will discuss with the nurse the purpose of the session and what to expect with the session. See Facilitator Guide C. Consent (5 mins) Facilitator will discuss the consent form with the Nurse and they will be asked to sign the form. See Appendix C: Consent and Assent Documents. Contextual Inquiry (Length of Patient Treatment) Facilitator and Observer will follow the Nurse around the unit observing what he or she does, asking questions to clarify and promote discussion. See Observer Guide C. Semi-Structured Interview (30 min) Facilitator will ask the Nurse to reflect on their experience, ask them a few questions, and gain any clarification about things they did or said during the inquiry. Conclusion (5 mins) Facilitator will thank the Nurse for participating. There will be a quick recap about the session, distributing contact information and clarifying any questions will be done with the guardian and participant.

Guided Tour

Completed March 30th, 2017

The team toured multiple locations within Seattle

together in this unique space. It also helped us

Childrenâ&#x20AC;&#x2122;s Hospital with our sponsor Dr. Ari Pollack.

understand the constraints one faces as a patient,

The group followed our sponsor around the hospital

guardian, or healthcare worker. The tour included

asking question in a very informal setting. Spaces,

other areas in the hospital, including playrooms

equipment, and different roles in the hospitals were

(indoors and outdoors), the emergency room, the

explained by our sponsor. Ari, being a nephrologist,

intensive care unit, and a standard patient room.

gave us a detailed tour of the dialysis unit,

However, at the end of the tour the team was

explaining the people, equipment, and the activities

really inspired by the dialysis unit and the design

that occur within the unit.

opportunities available in that space.

The guided tour helped the group understand how the people, equipment, and objects all interact

Appendix A: Support Materials

Checklist A | Fly on the Wall Supply List ☐ AEIOU Worksheet (12) ☐ Notebook ☐ Pens/Pencils ☐ DSLR Camera Photography Shot List ☐ Wide Shot Dialysis Unit, Nurse’s Station, Waiting Area ☐ Medium Shot Chair Equipment Setup ☐ Close-up Shot Chair, Dialysis Equipment

General Impressions/Observations

Elements, Features & Special Notes

[

Sketch Summary of Activities

/ Mark Baskinger baskinger@cmu.edu / Universal Methods of Design / Bruce Hanington hanington@cmu.edu / ÂŠ2011

Activities are goal-directed sets of actions. What are the pathways that people take toward the things they want to accomplish, including specific actions and processes? How long do they spend doing something? Who are they doing it with?

]

General Impressions of the Theme, Style, Materials & Atmosphere

Elements, Features & Special Notes

[ Floorplan

/ Mark Baskinger baskinger@cmu.edu / Universal Methods of Design / Bruce Hanington hanington@cmu.edu / ÂŠ2011

Environments include the entire arena where activities take place. For example, what describes the atmosphere and function of the context, including individual and shared spaces?

] Scenes

General Impressions/Observations

Elements, Features & Special Notes

[

Scenes of Interactions

/ Mark Baskinger baskinger@cmu.edu / Universal Methods of Design / Bruce Hanington hanington@cmu.edu / ÂŠ2011

Interactions are between a person and someone or something else, and are the building blocks of activities. What is the nature of routine and special interactions between people, between people and objects in their environment, and across distances?

]

General Impressions of the Theme, Style, Materials & Atmosphere

Sketch Inventory of Key Objects

/ Mark Baskinger baskinger@cmu.edu / Universal Methods of Design / Bruce Hanington hanington@cmu.edu / ÂŠ2011

Objects are the building blocks of the environment, key elements sometimes put to complex or even unintended uses, possibly changing their function, meaning and context. For example, what are the objects and devices people have in their environments, and how do these relate to their activities?

General Impressions of People in This Context

Sketch Inventory of People

Sketch Scenes of Users in Context

/ Mark Baskinger baskinger@cmu.edu / Universal Methods of Design / Bruce Hanington hanington@cmu.edu / ÂŠ2011

Users are the people whose behaviors, preferences, and needs are being observed. Who is present? What are their roles and relationships? What are their values and prejudices?

Checklist B | Draw the Experience Supply List

☐ Activity Sheet B.3-1 (7)

☐ Facilitator Guide B ☐ Individual Crayon Box (7) ☐ Individual Color Pencils Box (7) ☐ DSLR Camera ☐ Post-it Note Small ☐ Notebook ☐ Pens/Pencils

☐ Activity Sheet B.3-2 (7)

☐ Pencil Sharpener Activity Sheet List ☐ Activity Sheet B.1 (21)

☐ Activity Sheet B.4 (7)

☐ Activity Sheet B.2-1 (7)

☐ Activity Sheet B.5 (7)

☐ Activity Sheet B.2-2 (7)

Photography Shot List ☐ Close-up Shot Participants Artifact

Facilitator Guide B | Draw the Experience (Age < 12)

1 of 3

Introduction (5 mins) Hi, my name is [your name]. What is your name? Nice to meet you [Participant’s Name]. This is my friend [Introduces team] Today we are going to do some drawings and have a little conversation. Is that okay? [Wait for say “Yes”] Is it okay if I take some pictures of your drawings and record our conversation? [Wait for reply. If yes, START RECORDING]

Warm-Up (15 mins) - See Activity Sheet B.1. [Participant’s Name], do you have a favorite animal? Here... how about we start with drawing our favorite animals and then we will all share. Does that sound good? [“Yes” : Give everyone Activity Sheet and Crayons] [“No” : Talk to the participant] [Draw for about 5-10 minutes] Wow! That looks great. Do you mind telling us about your favorite animal? Do they have a name? [Everyone shares their drawings 5 minutes]

Activity (~ 40 mins) Before and After (Activity Sheet B.2-1) [Participant’s Name], how often do you come here? Oh so you spend a lot of time here. How about we draw somethings you do or place you go before you come to the hospital?

Facilitator Guide B | Draw the Experience (Age < 12)

2 of 3

[Give Activity Sheet and draw until done] Can you explain to me some of the things you drew? [Participantâ&#x20AC;&#x2122;s Name], can you draw somethings you do after you leave?

[Draw until done] What are some of the things you drew? Magic Bag (Activity Sheet B.3-1) Alright! I want you to imagine something. Imagine you have a magic bag the you could bring anything you wanted to the hospital. Do you think you could draw some of those things in the bag?

[Give Activity Sheet and draw for a little bit]

How about drawing things that you do while your here?

[Draw until done.] This looks like a lot of really great things! What is this?

[Point at different drawings]

[Participantâ&#x20AC;&#x2122;s Name], you are doing great! I really like your drawings. Do you need to take a break?

Facilitator Guide B | Draw the Experience (Age < 12)

3 of 3

[Take break, if necessary.] Draw yourself in dialysis room (Activity Sheet B.4) [Participant’s Name], can you draw yourself in the dialysis room? [Give Activity Sheet and draw for a little bit] [Participant’s Name], how about you give me a tour?

Good Day, Bad Day (Activity Sheet B.5) [Participant’s Name], can you tell me a story about a day when you had a really good trip to the hospital? [Participant’s Name], do have any stories about a day that wasn’t very good?

Reflection [Participant’s Name], how long have you been coming to the hospital? Do you remember your first day here? What was it like? What did you do while you were here when you first started? Now that you have be here a couple times you’re a pro! What do you feel before you come to the hospital? Do you feel different? What do you do now when you come to the hospital?

Conclusion (5 mins) [Participant’s Name], you were awesome today! I want to thank you sooo much for drawing and talking with [Team Member’s Name] and I. Before we go I want to make sure that you bring your drawing of your favorite animal home and don’t forget to take home the crayons too! Thank You! Have a great day!

Facilitator Guide B | Draw the Experience (Age > 11)

1 of 3

Introduction (5 mins) Hi, my name is [your name]. What is your name? Nice to meet you [Participant’s Name]. This is [Introduces team] Today we are going to do some drawings and have a little conversation. Is that okay? [Wait for say “Yes”] Is it okay if I take some pictures of any of the drawings and record our conversation? [Wait for reply. If yes, START RECORDING]

Warm-Up (5 mins) - See Activity Sheet B.1. [Participant’s Name], how about we go around and talk a little bit about ourselves and our interests? Would you like to start?

Activity (~ 40 mins) Weekly Planner (Activity Sheet B.2-2) [Participant’s Name], how often do you come here? Oh so you spend a lot of time here. How does dialysis fit into your weekly schedule? What things do you do outside of dialysis? You can write or draw on this planner if it would help you organize you schedule. [Give Activity Sheet] Magic Bag (Activity Sheet B.3-1) Alright! I want you to imagine something. Imagine you have a backpack that can hold anything. If you could bring anything to the hospital what would you bring? [Give Activity Sheet and draw, write, or discuss for a little bit] How about adding things that you do while your here?

Facilitator Guide B | Draw the Experience (Age > 11)

2 of 3

[Draw, Write or Discuss until done.] This looks like a lot of really great things!

[Participant’s Name], you are doing great! I really like your drawings. Do you need to take a break? [Take break, if necessary.] Draw yourself in dialysis room (Activity Sheet B.4) [Participant’s Name], can you draw yourself in the dialysis room? It doesn’t have to be perfect, just what does the dialysis room look like to you? [Give Activity Sheet and draw for a little bit] [Participant’s Name], how about you give me a tour?

Reflection [Participant’s Name], how long have you been coming to the hospital? Do you remember your first day here? What was it like? What did you do while you were here when you first started? Now that you have be here a couple times, you’re a pro!. What do you feel before you come to the hospital? Do you feel different?

Facilitator Guide B | Draw the Experience (Age > 11)

3 of 3

What do you do now when you come to the hospital?

Conclusion (5 mins) [Participant’s Name], you were awesome today! I want to thank you for drawing and talking with [Team Member’s Name] and I. Before we go I want to make sure you don’t have any more questions or things you would like to say. [Answer questions or listen to comment ] Thank You again! If you want to take home the colored pencil feel free. I hope you have a great day!

SUNDAY

MONDAY

TUESDAY

WEDNESDAY

THRUSDAY

FRIDAY

SATURDAY

BEFORE

AFTER

Checklist C | Contextual Inquiry Supply List ☐ Facilitator Guide C ☐ Audio Recorder ☐ Notebook ☐ Pens/Pencils

Facilitator Guide C | Contextual Inquiry

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Introduction (5 mins) Hi, my name is [your name]. I just want to start by introducing the team here today. [Introduces team] I will be doing most of the talking today but the others are here to capture this session for future reference. Before we get started I need you to read over this consent form and agree to what it states. If you have any questions or concerns please let me know and I will try to answer them as detailed as I can. [Hand consent form] Fantastic, I just want to go over the schedule for today. It will be broken into two parts, we will shadow you doing your routine and then have a short interview. If you ever need to take a break please let us know. We can stop the session at anytime. Is it okay if we audio record our conversation, just for reference in the future? [Wait for reply. If yes, START RECORDING]

Contextual Inquiry (Length of Patient Treatment) Throughout this session we might ask you a few questions and we just want you to know that their are no right or wrong answers. Now the time for you to take the lead and we will follow. Probe during the session to promote discussion and explanation, if you have any questions during the session ask them. Make sure not to hinder the nurseâ&#x20AC;&#x2122;s performance, being burdensome.

Semi-Structure Interview (30 min) Thank You so much for letting us tag along with you today. It was really great to see what you do and how you interact with others in the unit. We have a few questions that we would like to ask and have you reflect on. Again there are no right or wrong answers and all of your responses will be kept confidential and will only be used for research purposes. Do you need to take a break before we get started? The interview should take no longer than 30 mins.

Facilitator Guide C | Contextual Inquiry

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Here is a list of question, if you have any questions about things that happened during the session feel free to ask them.

Can you tell me story where you really impacted a patient’s day? Do you have a patient(s) that you really connect with? Can you tell me a story about interaction with one of them? What attention do you give to the individuals who accompany the child? What do you do to keep a patient calm during a treatment? How do patient’s attitudes change as they become more experienced with treatments?

Conclusion (5 mins) Thank you so much, those are all the question I have! If you have any concerns or question pertaining to your experience please don’t hesitate to email the team at email address provided on the consent form. Do you have any question now before we finish?

[Answer any additional questions, if any]

Thank You again, for letting us shadow you and interview you, we hope you enjoyed the experience as much as we did. We appreciate your openness, honesty, time, and attention.

Appendix B: Letters

Email | Nurse Manager Dear [Nurse Manager],

With appreciation,

Brandon Caruso, Michael Frampton, Megan Wilson

Email | Staff Nurse Dear [Staff Nurse],

With appreciation,

Brandon Caruso, Michael Frampton, Megan Wilson

Participation | Parent or Guardian Dear Patients and Guardians,

We are graduate students at the University of Washington working on a capstone project involving the dialysis unit under the mentorship of Dr. Ari Pollack. We study Human-Computer Interaction and Design and one of the main components of our design process is to understand the space and individuals we will be designing for. Our design process begins with research. We will work to understand the behaviors and challenges involved with receiving dialysis treatments. After gaining an understanding, we will design a solution that hopefully meets one of the needs uncovered during research. Finally, we will create a prototype of the solution and present it to the dialysis unit for feedback. We are excited to work with the children and understand their situation and point of view. Starting on April __ and until Aug __, we will be in and out of the dialysis unit on various occasions, making general observations and interacting with the patients. No names will be taken and no findings will be published. All of the research we do will only be used within the team to inform our design decisions for an academic project. We understand the demanding nature of caring for a child that needs dialysis treatment and are thankful for all you do. We will do our best to be accommodating and respectful of your needs and those of your family. Our hope is to be able to make a meaningful difference, if only in a small way. If you are willing to allow your child to participate in our research please carefully read and fill out the included consent form and return it to the dialysis unit at your earliest convenience. Please feel free to reach out to us with any questions or concerns you have by contact Michael Frampton (mframp@uw.edu) or Dr. Ari Pollack (ari.pollack@seattlechildrens.org).

With appreciation,

Brandon Caruso, Michael Frampton, Megan Wilson

NOTE: The times will be established once we discuss our plans with the dialysis unit leadership team. We are also looking to place this message on offical letterhead.

Appendix C: Consent and Assent Forms

Consent Form | Staff Nurse We are asking you to participate in a design project. This consent form is here to outline what the project will entail. If any questions arise pertaining to what you will be asked to do, the purpose of the research, or your rights as a voluntary participant you are able to ask at any time even after signing this form. This is a project conducted by Human-Computer Interaction and Design graduate students at the University of Washington under the mentorship of Dr. Ari Pollack, Nephrology. The purpose of this document is to specify your participation in the project. Your role in this research is voluntary. Additionally, you may withdraw your consent at any moment without penalty. You may be a part of four activities that may occur between April _ and August _. These activities include: general observation, shadowing, interviews sessions, and evaluations sessions of our designs. Observers may take notes and record audio during each activity. All notes and audio will remain confidential and will be used solely for reference purposes pertaining to this project. All materials will be kept confidential. No images of you will be taken. You have the right to not complete any of the activities requested. The researchers will only use your first name during in person research activities. Your likeness will not be used when presenting any work created from this project. There will be no financial compensation for your time. If you have any further question about this project or how your information will be used in the project please contact, Michael Frampton. Email: mframp@uw.edu Signing below you agree that you have read and understood this entire document. All questions regarding the project have been answered to your satisfaction.

Signature

Date

Consent Form | Parent or Guardian We are asking you to allow your child to participate in a design project. This consent form is here to outline what the project will entail. If any questions arise pertaining to what you will be asked to do, the purpose of the research, or the rights your children has as a voluntary participant you are able to ask at any time even after signing this form. This is a project conducted by MHCI+D graduate students at the University of Washington under the mentorship of Dr. Ari Pollack, Nephrology. The purpose of this document is to specify your child’s participation in the project. Your child’s role in this research is voluntary. Additionally, you may withdraw your consent at any moment without penalty. Your child may be a part of four activities that may occur between April _ and August _. These activities include: general observation, interactive interviews, participatory design sessions, and evaluations sessions of our designs. Observers will take notes and record audio during each activity. All notes and audio will remain confidential and will be used solely for reference purposes pertaining to this project. Observers may also take pictures of the drawings before the end of each session for reference. All materials will be kept confidential. No images of your child will be taken. Your child retains the right to keep any drawings completed during interactive interviews. Your child has the right to not complete any of the activities requested. You as the parent can also also request that your child not complete certain activities. Your child must also agree to want to participant in the session before each activity. The researchers will only use your child’s first name during in person research activities. Their likeness will not be used when presenting any work created from this project. There will be no financial compensation for your child’s time. If you have any further question about this project or how your information will be used in the project please contact, Michael Frampton. Email: mframp@uw.edu Signing below you agree that you have read and understood this entire document. All questions regarding the project have been answered to your satisfaction. As a parent or legal guardian, I authorize _____________________________________ to participate in this research study.

Signature

Date

Child’s Name

Assent Form | Child We are doing a design project dealing with dialysis care. Design is the creation of new and exciting things. Our team focuses on creating things that solve a problem, are easy to use, and are enjoyable for people. If you decide that you want to help with this project, you will be asked to do a variety of activities that might require to talk, write, or draw. Not everyone who takes part in this study will benefit. A benefit means that something good happens to you. We think your help might create something that will make your time getting dialysis treatment more enjoyable. When we are finished with this project we will write a report about what we learned and created with your help! This report will not include your name or that you were in the study. You do not have to be in this study if you do not want to be. If you decide to stop after we begin, thatâ&#x20AC;&#x2122;s okay too. Your parents know about the study too. If you decide you want to be in this study, please write your name.

I, _________________________________, want to help with this project.