SLIDE 1
The Uncertainty Study Research Presentation Spring 2015
Design Team
Blake Lane Faculty Lead Jenny Beruscha Graphic Design Co-op Kyle Cypher Graphic Design Co-op Elliot Peng Design Graduate Student Wang Xi Design PhD Candidate
The Uncertainty Study Research Presentation 26 February 2015 - - PowerPoint PPT Presentation
The Uncertainty Study Research Presentation 26 February 2015 - - PowerPoint PPT Presentation
The Uncertainty Study Research Presentation 26 February 2015 Design Team Blake Lane Jenny Beruscha Kyle Cypher Elliot Peng Wang Xi Faculty Lead Graphic Design Graphic Design Design Graduate Design PhD Co-op Co-op Student Candidate
SLIDE 2
SLIDE 3
The Uncertainty Study Research Presentation Spring 2015
Our Process
SLIDE 4
The Uncertainty Study Research Presentation Spring 2015
Our Process
Identifjcation Data Collection Information Synthesis
SLIDE 5
The Uncertainty Study Research Presentation Spring 2015
Our Process
Our Process
Identifjcation Data Collection Information Synthesis
Project Brief Kickoff Presentation Interview Question Review Clinical Staff Interviews Family Interviews Research Presentation Initial Research Kickoff Meeting Preparation Interview Preparation Secondary Research & Benchmarking Coding Interviews Organize Insights Develop Takeaways Research Presentation Preparation LWC Team LWC Team + CCHMC
SLIDE 6
The Uncertainty Study Research Presentation Spring 2015
Design Thinking Strategy
Our Process
Empathy
for the context surrounding a problem
Creativity
in generating insights
Rationality
in analyzing and applying solutions
SLIDE 7
The Uncertainty Study Research Presentation Spring 2015
Identify the Problem
SLIDE 8
The Uncertainty Study Research Presentation Spring 2015
Identifying The Problem
Illness Uncertainty
Illness uncertainty increases the risk for psychological distress for years following diagnosis for both patients and parents. Parents of children with new cancer diagnosis are confronted with:
Ambiguous Physical Symptoms Complex Treatment Regimens Unpredictability Regarding Survival
1 2 3
SLIDE 9
The Uncertainty Study Research Presentation Spring 2015
Illness Uncertainty
Identify The Problem
Problem
Illness uncertainty is a function of the interaction between antecedent illness characteristics or events and an individual’s subjective appraisal of those events and the potential outcomes.
Current Solution
CCHMC provides a binder packed with all the necessary information families will need to know about their child’s diagnosis.
?
SLIDE 10
The Uncertainty Study Research Presentation Spring 2015
Opportunity Area
Problem
This binder is provided to families during times of major distress and is continuously growing as new information
- n treatments, drugs, and other processes are introduced
to the families, which causes families to feel overwhelmed and anxious about their child’s diagnosis.
Identify The Problem
Feeling Overwhelmed and Anxious
Binder Opportunity Gap
SLIDE 11
The Uncertainty Study Research Presentation Spring 2015
Design Deliverables
Interactive Electronic Platform
Phone-based application education/information gathering tool for adults and children experiencing illness uncertainty due to cancer diagnosis.
Two Phases
First semester: Produce a low resolution phone-based application. Second semester: Test and refjne the low resolution application to generate a high resolution end product.
Key Design Elements
Self-administered Simple and easy to use Personalized information Gathers and organizes Tailored messages for different cancer diagnoses Personalized for individual family needs
Identify The Problem
SLIDE 12
The Uncertainty Study Research Presentation Spring 2015
Research Goals
The overall goal of this project is to measure the effjcacy of the Parent Uncertainty Management Intervention (PUMI) with an Education and Support Only (ESO) group on the psychological functioning of children newly diagnosed with cancer and their parents.
Identify The Problem
SLIDE 13
The Uncertainty Study Research Presentation Spring 2015
Research Goals
The portal will target uncertainty by providing site-specifjc information regarding multiple topic areas for the patient and family including:
Identify The Problem
Medical
Communication
Hospital Local Services Access to Resources PUMI Materials
SLIDE 14
The Uncertainty Study Research Presentation Spring 2015
Methodology
SLIDE 15
The Uncertainty Study Research Presentation Spring 2015
Methodology
Interviews Journal Articles
Primary Research Secondary Research
SLIDE 16
The Uncertainty Study Research Presentation Spring 2015
Interviews
Doctors Nurse Practitioners Nurses Pharmacists Dietitians Personal Care Specialists Care Managers Child Life Social Workers Teachers School Intervention Chaplain Clinical Directors AVP of Patient Services Pharmacy Manager Customer Service Rep Health Unit Coordinator
Methodology
Families Medical Staff Management Support Staff Other Staff
13 16 21 6 5
Total Interviews: 61
SLIDE 17
The Uncertainty Study Research Presentation Spring 2015
Journal Articles
Methodology
Publications
Exploratory and Confjrmatory Factor Analysis of the Child Uncertainty in Illness Scale Among Children With Chronic Illness
Pai et al
Impact of Parent Intervention
- n Child Adjustment
Fedele et al
Oncology Patient/Parent Handbook
Cincinnati Children’s Hospital
Uncertainty in Youth with Chronic Illness
Mullins et al
Parents’ information needs about the treatment of their chronically ill child
Alda Hummelinck, Kristian Pollock
Parents’ perceptions of the information provided to them about their child’s leukemia
Evangelia Patistea, Fotoula Babatsikou
Clinic-Based Cancer Intervention
Mullins et al
CancerApps
Talha Khan Burki
SLIDE 18
The Uncertainty Study Research Presentation Spring 2015
Journal Articles
Methodology
Summaries
Parents’ perceptions of the information provided to them about their child’s leukemia
Evangelia Patistea, Fotoula Babatsikou
Seeking of information can be thought of as a crisis-meeting resource that reduces parental stress and uncertainty Education about all aspects of their child’s illness is shown as being positive. Physicians may have hurried and inadequate information. Importance between Parent, child and health professional communication. Individual information needs vary as well as coping strategies Parents consider that the quality of information provided by healthcare professionals is inadequate. Independent health management and how health apps promote healthy living. Parent adjustment may drive later child adjustment. Interventions targeting parental factors can indirectly result in positive outcomes in their children.
Parents’ information needs about the treatment of their chronically ill child
Alda Hummelinck, Kristian Pollock
CancerApps
Talha Khan Burki
Impact of Parent Intervention on Child Adjustment
Fedele et al
SLIDE 19
The Uncertainty Study Research Presentation Spring 2015
Intervention Framework
Methodology
Pathways to coping intervention Appraisals
Caregiver illness uncertainty Baseline Psychosocial Risk
Outcomes
Lack of Information
- Nature of uncertainty education
- Nurse navigator
Ambiguity
- Identifjcation of uncertainty triggers
- Communication
Unpredictability
- Anticipatory guidance
- Information management
- Problem-solving skills
Caregiver
- Psychological distress
- PTSS
Child
- Psychological distress
Above chart from Impact of Parent Intervention on Child Adjustment pg.533
SLIDE 20
The Uncertainty Study Research Presentation Spring 2015
Insights
SLIDE 21
The Uncertainty Study Research Presentation Spring 2015
Synthesize Data
With the data from interviews and secondary research, the team created insights using mapping tools.
Insights
SLIDE 22
The Uncertainty Study Research Presentation Spring 2015
Tunnel Vision
Insights
SCHEDULING APPOINTMENTS
MEDICAL TERMS
TRANSPORTATION
DIET PLAN
KNOW CORE TEAM
HOME CARE
LODGING
HOW TO TELL SIBLINGS
MEMORIZE STAFF NAMES
SET UP SCHOOLING
LEARN PROCESS OF CHEMO
WHO TO CALL
HOW TO READ LAB REPORTS
COPING RESOURCES
AVOID INTERNET SEARCHES
ASK QUESTIONS
FINANCIAL HELP
NOTICE SYMPTOMS OF CHILD
SURVIVAL OF CHILD
SCHEDULING APPOINTMENTS
MEDICAL TERMS
TRANSPORTATION
DIET PLAN
KNOW CORE TEAM
HOME CARE
LODGING
HOW TO TELL SIBLINGS
MEMORIZE STAFF NAMES
SET UP SCHOOLING
LEARN PROCESS OF CHEMO
WHO TO CALL
HOW TO READ LAB REPORTS
COPING RESOURCES
AVOID INTERNET SEARCHES
FINANCIAL HELP
NOTICE SYMPTOMS OF CHILD
L
SLIDE 23
The Uncertainty Study Research Presentation Spring 2015
Uncertainty Factors
Insights
Information Support Communication
Flow of information Materials and resources Staff support Community support Communication with staff Communication with family
SLIDE 24
The Uncertainty Study Research Presentation Spring 2015
Information
Clinical Insights
Insights
Flow of Information
During diagnosis families are verbally bombarded with information. The amount of information given depends on the families’ preferences. Information is expressed differently to parents than their Child. Information that is not passed on at shift change may be lost.
Materials and resources
Families may not be absorbing information they are given in the binder. The binder can be large and daunting. A lot of business cards are given by the medical staff. The amount of information the binder gives can become overwhelming.
SLIDE 25
The Uncertainty Study Research Presentation Spring 2015 Insights
Staff support
The parents may not get a lot of staff support. Staff may fjnd it diffjcult to provide support for families as well as privacy. Staff support is dropped when families leave the hospital.
Community support
Mitigating the fear of the unknown depends heavily on family support. Non-local families depend more on support groups.
Support
Clinical Insights
SLIDE 26
The Uncertainty Study Research Presentation Spring 2015 Insights
Communication with staff
Staff communicate information in different ways to patients. Voalte phones do not yet allow staff to communicate with families.
Communication within families
Video communication is not readily available within the hospital. Information for siblings and younger children may not be provided.
Communication
Clinical Insights
SLIDE 27
The Uncertainty Study Research Presentation Spring 2015 Insights
Flow of Information
In the beginning, parents may have diffjculty absorbing information. Poor lab values can become stressful to parents when they are seen. Parents may search online and gather their own information.
Materials and resources
Parents may need to use the binder
- ften in the beginning.
The binder is used as storage for all of the business cards. Some parents never receive or look at the binder. Medical apps my provide information that is irrelevant to the family’s needs.
Information
Family Insights
SLIDE 28
The Uncertainty Study Research Presentation Spring 2015 Insights
Staff support
Families that had rare diagnosis felt that they were lacking staff support. Some parents did not recognize staff that helped them cope.
Community support
Non-local families have less family support around them. Non-local families have a harder time coping.
Support
Family Insights
SLIDE 29
The Uncertainty Study Research Presentation Spring 2015 Insights
Communication with staff
There may not be a way to contact staff quickly for basic questions. Some families did not know that there was a Care Conference. Communication about procedural changes is not being communicated.
Communication within families
Older siblings may not be given much support within the family. Families that are not local rely more
- n technology to communicate.
Communication
Family Insights
SLIDE 30
The Uncertainty Study Research Presentation Spring 2015
Benchmarking Apps
Insights
Management Education Interaction
MyChart My Net Manager Pain Squad iHealth Log My Pancreas My Care Plan CareZone Simply Sayin iCarebook Fit4Kids Care CaringBridge Embrace
SLIDE 31
The Uncertainty Study Research Presentation Spring 2015
Management
Insights
My Chart
My Chart helps the patients to manage their health information and communicate with their doctors on the mobile device.
Information
Flow of information Materials and resources
Communication
Communication with staff
SLIDE 32
The Uncertainty Study Research Presentation Spring 2015
Management
Insights
CareZone
CareZone will help the users organize important information, privately coordinate with family and caregiver, and make sure everyone is in the know when it comes to tasks, appointments, and medications.
Information
Flow of information Materials and resources
Support
Self Support
SLIDE 33
The Uncertainty Study Research Presentation Spring 2015
Education
Insights
Simply Sayin
Simply Sayin uses pictures, sounds and child friendly glossary of terms to facilitate clear conversations between the healthcare provider, child and family.
Information
Materials and resources
SLIDE 34
The Uncertainty Study Research Presentation Spring 2015
Education
Insights
iCareBook
The Johns Hopkins iCareBook for Pancreatic Cancer is an educational guide for patients, family members and friends facing a diagnosis of pancreatic cancer.
Information
Flow of information Materials and resources
Support
Self Support
Communication
Communication with staff
SLIDE 35
The Uncertainty Study Research Presentation Spring 2015
Interaction
Insights
CaringBridge
CaringBridge connects users with the support of their friends and family when it’s needed most. It can create a website, visit a friend’s age, add updates or encouraging notes, and share the stories.
Support
Staff Support Community support
Communication
Communication with family
SLIDE 36
The Uncertainty Study Research Presentation Spring 2015
Interaction
Insights
Embrace
Embrace is a digital app to provide ethnic minorities with comforting medical
- experience. It empowers them with
effective tools to communicate their
- wn health conditions without relying
- n interpreters.
Information
Flow of information
Communication
Communication with staff
SLIDE 37
The Uncertainty Study Research Presentation Spring 2015
Next Steps
SLIDE 38
The Uncertainty Study Research Presentation Spring 2015
What’s Next
Priority Activity Schedule Co-Creation Wireframe Architecture