Research Stage Graduate CAPSTONE:
Pediatric DIALYSIS RESEARCH
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, contextual interviews, fly on the wall, draw and talk interviewing
Megan Wilson, Brandon Caruso, Michael Frampton
User Researcher. Research methods and written content in reports. Design of reports were created by Brandon Caruso.
Seattle Children's Hospital: Ari Pollack M.D. MSIM
Length of project
Pediatric Dialysis Patients at Seattle Children's Hospital
17 patients currently receiving hemodialysis
All different demographics and socioeconomic statuses.
Seattle Children's Hospital treats patients in 5 states: Washington, Oregon, Idaho, Wyoming, and Alaska
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, 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/ LIT REVIEW
Pediatric dialysis patients spend 3-5 hours 3-5 times a week within the dialysis unit. 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.
These research questions are based on the information gained from the 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?
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.
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.
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.
DRAW AND TALK INTERVIEWING
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.
- 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.
This method created insights from the data we collected. We used the generated insights to generate design ideas in our ideation process. Data is coded from all the research methods. Upon the sticky notes are user quotes, observations, and facts about hemodialysis from medical literature and medical professionals. This data is coded into related clusters.
These insights were drawn from the research methods and drove our design ideas.
Our design principles were modeled after our insights. Our design principles served as a framework during our design stage to remind of us of why we were designing, how it might impact the space, and how it would effect our users.
WHAT WOULD WE DO DIFFERENTLY?
- Over-recruit. Many of our participants did not feel well enough or did not wish to participate in studies even though they had signed up previously.
- Participatory design was not very successful in its intended purpose. It was successful as a medium for children to speak to.
- More time for background research (medical literature) of the space. Much of our time was spent learning about the process of hemodialysis and the process of being connected to the hemodialysis machines.