Graduate CAPSTONE: 

DIALYSIS UNIT RESEARCH

 
DSC00198.JPG
 
 

CAPSTONE DIALYSIS RESEARCH INTRODUCTION

Our capstone research surrounds the pediatric dialysis unit located within Seattle Children's hospital. The goal of our team was to improve the experience for the child within the unit. Previous research has focused so much on what the parents of the patients and medical staff wanted we wanted to make sure we were focusing on the child. 

Research methods: literature review, expert interviews, competitive assessment, contextual interviews, tour, fly on the wall, participatory design

 

 

Team

Megan Wilson, Brandon Caruso, Michael Frampton

My role

The team equally contributed to the research in this project. Design of reports were created by Brandon Caruso.

Sponsor

Seattle Children's Hospital: Ari Pollack M.D. MSIM

Length of project

3 months

 

There is nothing I can do, but wait it out. All I have is time.
— Parent explaining to us how they feel about their child having renal disease

 

PROCESS

We started the project with a literature review to gain an understanding of the unfulfilled needs for pediatric dialysis patients. To gain a deeper understanding of the dialysis unit, we conducted 3 Expert interviews to learn more about the dialysis unit and how to conduct design research with children. We also conducted 4 contextual inquiries, a guided tour, 3 fly on the wall activites, and 4 draw and talk interviews with patients. From this research we gained a lot of insight about how the dialysis unit functions as a relational and technological space.

 

SECONDARY RESEARCH INSIGHTS

Owned by The Seattle Times

Owned by The Seattle Times

This time commitment creates time away from home, school (Maslow et al., 2011), and social life for children with chronic illness. Children with chronic illness experience a feeling of distance and isolation from their peers and a lost sense of normalcy (Liu et al., 2001), this additional time consumption because of dialysis increases this distance from a “normal life”.

It can be difficult for pediatric patients and the families of pediatric patients to to make time for 'normal' activities and a social life. Various health appointments and the time commitment of dialysis take up most of this time. This lack of a 'normal life' can affect the self-image and sense of normalcy for pediatric patients. This was was discovered during the literature review and also reaffirmed during our expert interviews. Another challenge to pediatric patients is understanding how patients keep up with schooling and how dialysis affects educational attainment outcomes. We used the literature review to understand what having a chronic illness is like and how it affects children's lives. 

 

RESEARCH QUESTIONS

These research questions are based on the information gained from literature review:

1. What activities do patients engage in during dialysis treatment?

2. What are both the limitations and encouraged activities for dialysis patients?

3. What are the patient’s attitudes towards dialysis?

4. Where does dialysis fit into a patient’s schedule?

5. What social interactions do dialysis patients engage in during their treatment?

6. How does undergoing dialysis affect the self-image and sense of normalcy for patients?

7. How do patient’s attitudes change as they become more experienced with treatments?

 

EXPERT INTERVIEWS

For our expert interviews my team interviewed 3 experts. Our experts were a design professor, an art therapist, and the director of the dialysis unit. Findings from our interviews were:

  • When conducting research with children, establishing and maintaining a relationship with them is king. Losing their trust is very easy.
  • Dialysis is a huge time commitment for patients and families. It affects job and housing opportunities, their social lives, and mental health.
  •  The needs for a child should give the child joy, autonomy, and comfort. 
Art lets kids have a choice. It let’s kids push through their anguish and build resiliency.
— Art Therapist

FLY ON THE WALL

To gain a perspective on the natural environment we performed 3 separate fly on the wall activities. 

Some of the findings we concluded from the observations were:

  • Nurses play a lot more with the patients than previously thought by the researchers.
  • The unit is small. Medical staff must navigate around and cooperate constantly to perform work effectively.
  • Patients seemed the most excited when people came to spend time with them, such as the art therapist or teacher.
What happens next?
— Young Patient to Nurse

CONTEXTUAL INQUIRIES

Two team members, interviewer and note-taker, followed nurses and staff members through their daily routine to see how they prepare, administer and complete treatment. We interviewed 3 staff nurses and 1 CNA, while shadowing. 

Some of the findings we concluded from the contextual inquiries were:

  • Everything in the unit must be sanitized to prevent infection. This sanitation takes time, effort, and meticulous routines. 
  • Distraction of patients is currently the most effective method to have dialysis work the most efficiently and keeping the patients calm. Although, patients prefer attention and play. 
  • Keeping patients from eating foods not suitable for dialysis patients makes treating the patients more difficult for the nurses. 
IMG_8609.JPG
We just try to make it better. (Nurse talking about trying to comfort the patients.)
— RN in Dialysis Unit

DRAW AND TALK INTERVIEWING

D Drawing.jpg

We interviewed 4 patients. Drawing was one way for the patient to communicate and externalize thoughts. The patients were also asked to have a conversation. Caregivers or parents were also consulted to answer questions for very young or shy patients.

Some findings: 

  • Patients come from many different lifestyles and this affects how they adjust to dialysis. 
  • Many patient have co-existing conditions that consume more time and attention from families. 
  • Patients have preferences for nurses and how they prefer care to be conducted.
I wish I could stand up again. (Patient is wheelchair bound due to illness.)
— Patient (Teen)

AFFINITY DIAGRAMMING

This method created insights from the data we collected. We are currently using the generated insights to generate design ideas in our ideation process. 

INSIGHTS

These insights were drawn from the research methods and will drive our design ideas.

 

NEXT STEPS

As we move into the next design stage, we will begin ideating with the insights generated above. While these constitute some of the most prominent topic areas from our research, we will be using them simply as springboards and not as design constraints. A main consideration moving forward will be to balance the needs of pediatric patients with the needs and values of their parents, the hospital, and its staff.