Lily V Jeffs, Julia C Dunbar, Sanaa Syed, Chelsea Ng, Ari H Pollack
{"title":"正常导航:为小儿肾移植受者和护理人员设计个人健康可视化。","authors":"Lily V Jeffs, Julia C Dunbar, Sanaa Syed, Chelsea Ng, Ari H Pollack","doi":"10.1093/jamia/ocae206","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Patients with chronic illnesses, including kidney disease, consider their sense of normalcy when evaluating their health. Although this concept is a key indicator of their self-determined well-being, they struggle to understand if their experience is typical. To address this challenge, we set out to explore how to design personal health visualizations that aid participants in better understanding their experiences post-transplant, identifying barriers to normalcy, and achieving their desired medical outcomes.</p><p><strong>Materials and methods: </strong>Pediatric kidney transplant patients and their caregivers participated in three asynchronous design sessions involving sharing experiences, presenting symbolic objects, and providing feedback on visualizations to understand their perceptions of normalcy post-transplant. Data analysis of design session 1 and 2 comprised deductive and inductive analysis. We used affinity diagramming to identify thematic areas about participants' transplant experiences. Comprehension of design session three normalcy visualizations was also evaluated.</p><p><strong>Results: </strong>Participants effectively engaged in the design sessions, revealing diverse perspectives on their experiences. We found there is a significant need for visualizations that depict normalcy to better inform patients and caregivers about their health.</p><p><strong>Discussion: </strong>Normalcy Visualizations should incorporate three key design principles: personal values, facilitating peer and self-comparison, and seamlessly communicating abstract concepts to help youth kidney transplant recipients comprehend and contextualize if their transplant experience is normal and what normalcy means to them.</p><p><strong>Conclusion: </strong>By incorporating holistic aspects of patients' and caregivers' lives into personal health visualizations, they can be cognizant of their progress to normalcy and empowered to make decisions that help them feel normal.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":null,"pages":null},"PeriodicalIF":4.7000,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Navigating normalcy: designing personal health visualizations for pediatric kidney transplant recipients and caregivers.\",\"authors\":\"Lily V Jeffs, Julia C Dunbar, Sanaa Syed, Chelsea Ng, Ari H Pollack\",\"doi\":\"10.1093/jamia/ocae206\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>Patients with chronic illnesses, including kidney disease, consider their sense of normalcy when evaluating their health. Although this concept is a key indicator of their self-determined well-being, they struggle to understand if their experience is typical. To address this challenge, we set out to explore how to design personal health visualizations that aid participants in better understanding their experiences post-transplant, identifying barriers to normalcy, and achieving their desired medical outcomes.</p><p><strong>Materials and methods: </strong>Pediatric kidney transplant patients and their caregivers participated in three asynchronous design sessions involving sharing experiences, presenting symbolic objects, and providing feedback on visualizations to understand their perceptions of normalcy post-transplant. Data analysis of design session 1 and 2 comprised deductive and inductive analysis. We used affinity diagramming to identify thematic areas about participants' transplant experiences. Comprehension of design session three normalcy visualizations was also evaluated.</p><p><strong>Results: </strong>Participants effectively engaged in the design sessions, revealing diverse perspectives on their experiences. We found there is a significant need for visualizations that depict normalcy to better inform patients and caregivers about their health.</p><p><strong>Discussion: </strong>Normalcy Visualizations should incorporate three key design principles: personal values, facilitating peer and self-comparison, and seamlessly communicating abstract concepts to help youth kidney transplant recipients comprehend and contextualize if their transplant experience is normal and what normalcy means to them.</p><p><strong>Conclusion: </strong>By incorporating holistic aspects of patients' and caregivers' lives into personal health visualizations, they can be cognizant of their progress to normalcy and empowered to make decisions that help them feel normal.</p>\",\"PeriodicalId\":50016,\"journal\":{\"name\":\"Journal of the American Medical Informatics Association\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":4.7000,\"publicationDate\":\"2024-07-30\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of the American Medical Informatics Association\",\"FirstCategoryId\":\"91\",\"ListUrlMain\":\"https://doi.org/10.1093/jamia/ocae206\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"COMPUTER SCIENCE, INFORMATION SYSTEMS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of the American Medical Informatics Association","FirstCategoryId":"91","ListUrlMain":"https://doi.org/10.1093/jamia/ocae206","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"COMPUTER SCIENCE, INFORMATION SYSTEMS","Score":null,"Total":0}
Navigating normalcy: designing personal health visualizations for pediatric kidney transplant recipients and caregivers.
Objectives: Patients with chronic illnesses, including kidney disease, consider their sense of normalcy when evaluating their health. Although this concept is a key indicator of their self-determined well-being, they struggle to understand if their experience is typical. To address this challenge, we set out to explore how to design personal health visualizations that aid participants in better understanding their experiences post-transplant, identifying barriers to normalcy, and achieving their desired medical outcomes.
Materials and methods: Pediatric kidney transplant patients and their caregivers participated in three asynchronous design sessions involving sharing experiences, presenting symbolic objects, and providing feedback on visualizations to understand their perceptions of normalcy post-transplant. Data analysis of design session 1 and 2 comprised deductive and inductive analysis. We used affinity diagramming to identify thematic areas about participants' transplant experiences. Comprehension of design session three normalcy visualizations was also evaluated.
Results: Participants effectively engaged in the design sessions, revealing diverse perspectives on their experiences. We found there is a significant need for visualizations that depict normalcy to better inform patients and caregivers about their health.
Discussion: Normalcy Visualizations should incorporate three key design principles: personal values, facilitating peer and self-comparison, and seamlessly communicating abstract concepts to help youth kidney transplant recipients comprehend and contextualize if their transplant experience is normal and what normalcy means to them.
Conclusion: By incorporating holistic aspects of patients' and caregivers' lives into personal health visualizations, they can be cognizant of their progress to normalcy and empowered to make decisions that help them feel normal.
期刊介绍:
JAMIA is AMIA''s premier peer-reviewed journal for biomedical and health informatics. Covering the full spectrum of activities in the field, JAMIA includes informatics articles in the areas of clinical care, clinical research, translational science, implementation science, imaging, education, consumer health, public health, and policy. JAMIA''s articles describe innovative informatics research and systems that help to advance biomedical science and to promote health. Case reports, perspectives and reviews also help readers stay connected with the most important informatics developments in implementation, policy and education.