From symptoms to systems: An autoethnography of cystic fibrosis through systems engineering

This thesis explores the multifaceted journey of managing cystic fibrosis (CF) through systems engineering and autoethnography. CF is a life-shortening progressive genetic disease affecting approximately 40,000 individuals in the United States and 105,000 worldwide, characterized by extensive respiratory infections and failure, chronic digestive complications, significantly impacting quality of life and necessitating intensive medical management. Leveraging my lived experiences, I examine how chronic illness management can inform and be informed by human factors and systems engineering principles. I analyzed twenty-seven years of journal entries, medical records, and reflective writing in an autoethnography using the Systems Engineering Initiative for Patient Safety (SEIPS) model, Signal Detection Theory (SDT), and the Salience, Effort, Expectancy, and Value (SEEV) model to frame the analysis of daily decision-making processes and systemic challenges faced by CF patients. I did a work system analysis and identified themes of physical deterioration, operational effectiveness, and collaborative care processes, emphasizing the resilience required to navigate a life marked by intensive treatments and medical interventions. Additionally, I found that regenerative agriculture, exercise, nutrition, and maintaining gut microbiome health have all been necessary tools and resources to inform my decision-making and survival strategies integral to chronic illness management. In this study, I highlighted the value of narratives of patients in healthcare system design, advocating for empathetic, patient-centered approaches that integrate insights from both medical professionals and those living with chronic illness. By bridging theoretical frameworks and personal experience, this work can inform improvements to care models, enhance patient outcomes, and contribute to the growing body of interdisciplinary research on chronic disease management.

Name thesis:degree_name

M.S.

Level thesis:degree_level

Thesis

Discipline thesis:degree_discipline

Systems & Entrepreneurial Engr

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2024

Author dc:creator

• Knecht, Anya

Contributors dc:contributor

• Wooldridge, Abigail R

• Multidisciplinary Care
• Lived Experience
• Regenerative Agriculture
• Gut Microbiome
• Nutrition
• Narrative Medicine
• Empathy Training
• Psychological Adaptation Decision Criteria
• Patient-centered Design
• Cystic Fibrosis (cf)
• Systems Engineering
• Autoethnography
• Chronic Illness Management
• Patient Safety
• Decision-making Frameworks
• Signal Detection Theory (sdt)
• Salience, Effort, Expectancy, Value (seev) Model
• Resilience
• Healthcare System Design
• Interdisciplinary Research
• Human Factors Engineering

Statement dc:rights

• Copyright 2024 Anya Knecht

Language dc:language

en, eng

Handle dc:identifier

https://hdl.handle.net/2142/127283

OAI record oai:identifier

https://www.ideals.illinois.edu/oai-pmh?verb=GetRecord&metadataPrefix=etdms&identifier=oai%3Awww.ideals.illinois.edu%3A2142%2F127283