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 The Uncertainty Study Research Presentation Spring 2015
Our Process The Uncertainty Study Research Presentation Spring 2015
Our Process Data Information Identifjcation Collection Synthesis The Uncertainty Study Research Presentation Spring 2015
Our Process Our Process Data Information Identifjcation Collection Synthesis Project Brief Kickoff Interview Question Clinical Staff Family Research Presentation Review Interviews Interviews Presentation Initial Research Kickoff Meeting Interview Preparation Secondary Research Coding Organize Develop Research Preparation & Benchmarking Interviews Insights Takeaways Presentation Preparation LWC Team + CCHMC LWC Team The Uncertainty Study Research Presentation Spring 2015
Our Process Design Thinking Strategy Empathy Creativity Rationality for the context in generating in analyzing and surrounding a insights applying solutions problem The Uncertainty Study Research Presentation Spring 2015
Identify the Problem 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: 1 2 3 Ambiguous Complex Unpredictability Physical Treatment Regarding Symptoms Regimens Survival The Uncertainty Study Research Presentation Spring 2015
Identify The Problem Illness Uncertainty 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. The Uncertainty Study Research Presentation Spring 2015
Identify The Problem Opportunity Area Problem This binder is provided to families during times of major distress and is continuously growing as new information Feeling on treatments, drugs, and other processes are introduced Binder to the families, which causes families to feel overwhelmed Overwhelmed and anxious about their child’s diagnosis. and Anxious Opportunity Gap The Uncertainty Study Research Presentation Spring 2015
Identify The Problem 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 The Uncertainty Study Research Presentation Spring 2015
Identify The Problem 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. The Uncertainty Study Research Presentation Spring 2015
Identify The Problem Research Goals The portal will target uncertainty by providing site-specifjc information regarding multiple topic areas for the patient and family including: Medical Hospital Communication Local Access to PUMI Services Resources Materials The Uncertainty Study Research Presentation Spring 2015
Methodology The Uncertainty Study Research Presentation Spring 2015
Methodology Primary Research Secondary Research Journal Interviews Articles The Uncertainty Study Research Presentation Spring 2015
Methodology Interviews 13 16 21 6 5 Families Medical Support Management Other Staff Staff Staff Doctors Care Managers Clinical Directors Customer Service Rep Nurse Practitioners Child Life AVP of Patient Services Health Unit Coordinator Nurses Social Workers Pharmacy Manager Pharmacists Teachers Dietitians School Intervention Personal Care Chaplain Specialists Total Interviews: 61 The Uncertainty Study Research Presentation Spring 2015
Methodology Journal Articles Publications Exploratory and Confjrmatory Factor Analysis of the Child Uncertainty in Illness Scale Among Children With Chronic Illness Pai et al Parents’ perceptions of the Parents’ information needs Oncology Patient/Parent information provided to them about the treatment of their Handbook about their child’s leukemia chronically ill child Evangelia Patistea, Fotoula Babatsikou Alda Hummelinck, Kristian Pollock Cincinnati Children’s Hospital Impact of Parent Intervention Clinic-Based Cancer Uncertainty in Youth with CancerApps on Child Adjustment Intervention Chronic Illness Fedele et al Mullins et al Mullins et al Talha Khan Burki The Uncertainty Study Research Presentation Spring 2015
Methodology Journal Articles Summaries Seeking of information can be thought of as a crisis-meeting resource that Parents’ perceptions of the reduces parental stress and uncertainty information provided to them about their child’s leukemia Education about all aspects of their child’s illness is shown as being positive . Evangelia Patistea, Fotoula Babatsikou Physicians may have hurried and inadequate information. Parents’ information needs about the Importance between Parent, child and health professional communication. treatment of their chronically ill child Individual information needs vary as well as coping strategies Alda Hummelinck, Kristian Pollock Parents consider that the quality of information provided by healthcare professionals is inadequate. CancerApps Independent health management and how health apps promote healthy living . Talha Khan Burki Impact of Parent Intervention on Parent adjustment may drive later child adjustment. Child Adjustment Interventions targeting parental factors can indirectly result in positive outcomes Fedele et al in their children. The Uncertainty Study Research Presentation Spring 2015
Methodology Intervention Framework Pathways Appraisals Outcomes to coping Caregiver illness intervention uncertainty Lack of Information Caregiver • Nature of uncertainty education • Psychological distress • Nurse navigator • PTSS Ambiguity • Identifjcation of uncertainty triggers • Communication Baseline Psychosocial Risk Unpredictability Child • Anticipatory guidance • Psychological distress • Information management • Problem-solving skills Above chart from Impact of Parent Intervention on Child Adjustment pg.533 The Uncertainty Study Research Presentation Spring 2015
Insights The Uncertainty Study Research Presentation Spring 2015
Insights Synthesize Data With the data from interviews and secondary research, the team created insights using mapping tools. The Uncertainty Study Research Presentation Spring 2015
Insights Tunnel Vision LEARN PROCESS LEARN PROCESS OF CHEMO OF CHEMO SCHEDULING SCHEDULING HOW TO READ HOW TO READ APPOINTMENTS APPOINTMENTS LAB REPORTS LAB REPORTS AVOID INTERNET AVOID INTERNET DIET PLAN DIET PLAN SEARCHES SEARCHES NOTICE NOTICE HOME HOME SURVIVAL L SYMPTOMS SYMPTOMS CARE CARE OF CHILD OF CHILD OF CHILD COPING COPING RESOURCES RESOURCES FINANCIAL FINANCIAL HELP HELP KNOW KNOW ASK QUESTIONS CORE TEAM CORE TEAM HOW TO TELL HOW TO TELL LODGING LODGING SIBLINGS SIBLINGS TRANSPORTATION TRANSPORTATION MEDICAL MEDICAL WHO TO CALL WHO TO CALL TERMS TERMS SET UP SCHOOLING SET UP SCHOOLING MEMORIZE STAFF MEMORIZE STAFF NAMES NAMES The Uncertainty Study Research Presentation Spring 2015
Insights Uncertainty Factors Information Support Communication Flow of information Staff support Communication with staff Materials and resources Community support Communication with family The Uncertainty Study Research Presentation Spring 2015
Insights Information Clinical Insights Flow of Materials and Information resources During diagnosis families are verbally Families may not be absorbing bombarded with information. information they are given in the binder. The amount of information given The binder can be large and daunting. depends on the families’ preferences. A lot of business cards are given Information is expressed differently by the medical staff. to parents than their Child. The amount of information the binder Information that is not passed on gives can become overwhelming. at shift change may be lost. The Uncertainty Study Research Presentation Spring 2015
Insights Support Clinical Insights Community Staff support support The parents may not get a lot of Mitigating the fear of the unknown staff support. depends heavily on family support. Staff may fjnd it diffjcult to provide Non-local families depend more on support for families as well as privacy. support groups. Staff support is dropped when families leave the hospital. The Uncertainty Study Research Presentation Spring 2015
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