research-article

Open access

Design considerations for family-centered health management: preliminary findings with pediatric BMT patients

Authors:

Sung Won ChoiAuthors Info & Claims

IDC '18: Proceedings of the 17th ACM Conference on Interaction Design and Children

Pages 593 - 598

https://doi.org/10.1145/3202185.3210781

Published: 19 June 2018 Publication History

PDF eReader

Abstract

Blood and marrow transplantation (BMT) is an intensive therapy for patients with life-threatening hematologic cancer as well as non-cancer diagnoses. Children, adolescents and young adults undergoing BMT ("pediatric patients") experience intensive medical procedures during their treatment and post-treatment recovery phases. We conducted a field study to identify common barriers that interfere with pediatric patient engagement in the management of their health and challenges that caregivers confront. Our study revealed four main factors. By exploring emerging themes, we suggest design opportunities for health technology to support patients and their caregivers over the course of long-term outpatient management.

References

[1]

Kenneth Haggerty, Borchuluun Yadamsuren, Francis Kibaru, and Josipa Basic. 2013. Children's information needs of a patient engagement system in a hospital room: Insights from usability testing in a simulation laboratory. Proceedings of the Association for Information Science and Technology 50, 1: 1--5.

Digital Library

Google Scholar

[2]

Matthew K. Hong, Clayton Feustel, Meeshu Agnihotri, Max Silverman, Stephen F. Simoneaux, and Lauren Wilcox. 2017. Supporting Families in Reviewing and Communicating about Radiology Imaging Studies. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems, 5245--5256.

Digital Library

Google Scholar

[3]

Matthew K. Hong, Lauren Wilcox, Daniel Machado, Thomas A. Olson, and Stephen F. Simoneaux. 2016. Care partnerships: Toward technology to support teens' participation in their health care. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 5337--5349.

Digital Library

Google Scholar

[4]

Elizabeth Kaziunas, David A. Hanauer, Mark S. Ackerman, and Sung Won Choi. 2015. Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation. Journal of the American Medical Informatics Association 23, 1: 94--104.

Crossref

Google Scholar

[5]

Laura MJ Kerr, Margaret B. Harrison, Jennifer Medves, Joan E. Tranmer, and Margaret I. Fitch. 2007. Understanding the supportive care needs of parents of children with cancer: An approach to local needs assessment. Journal of Pediatric Oncology Nursing 24, 5: 279--293.

Crossref

Google Scholar

[6]

Molly Maher, Elizabeth Kaziunas, Mark Ackerman, Holly Derry, Rachel Forringer, Kristen Miller, Dennis O'Reilly, Larry C. An, Muneesh Tewari, David A. Hanauer, and others. 2016. User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool. Biology of Blood and Marrow Transplantation 22, 2: 349--358.

Crossref

Google Scholar

[7]

Laura R. Pina, Sang-Wha Sien, Teresa Ward, Jason C. Yip, Sean A. Munson, James Fogarty, and Julie A. Kientz. 2017. From Personal Informatics to Family Informatics: Understanding Family Practices around Health Monitoring. In CSCW, 2300--2315.

Digital Library

Google Scholar

[8]

Hyunsook Shin and Rosemary White-Traut. 2005. Nurse-child interaction on an inpatient paediatric unit. Journal of advanced nursing 52, 1: 56--62.

Crossref

Google Scholar

[9]

Meredith Skeels and Desney S. Tan. 2010. Identifying opportunities for inpatient-centric technology. In Proceedings of the 1st ACM International Health Informatics Symposium, 580--589.

Digital Library

Google Scholar

Cited By

View all

Barbazi NShin JHiremath GLauff C(2025)Exploring Health Educational Interventions for Children With Congenital Heart Disease: Scoping ReviewJMIR Pediatrics and Parenting10.2196/648148(e64814)Online publication date: 24-Jan-2025
https://doi.org/10.2196/64814
Barbazi NShin JHiremath GLauff C(2024)Developing Assessment for Key Stakeholders in Pediatric Congenital Heart Disease: A Qualitative Pilot Study to Inform Designing a Medical Education Toy (Preprint)JMIR Formative Research10.2196/63818Online publication date: 30-Jun-2024
https://doi.org/10.2196/63818
Tennant RAllana SMercer KBurns C(2024)Capturing Home Care Information Management and Communication Processes Among Caregivers of Older Adults: Qualitative Study to Inform Technology DesignJMIR Formative Research10.2196/532898(e53289)Online publication date: 4-Jul-2024
https://doi.org/10.2196/53289
Show More Cited By

Index Terms

Design considerations for family-centered health management: preliminary findings with pediatric BMT patients
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. HCI design and evaluation methods
      1. Field studies

Recommendations

Designing Patient-Centered Personal Health Records (PHRs): Health Care Professionals' Perspective on Patient-Generated Data

Currently, patients not only want access to various medical records their health care providers keep about them, but they also are willing to become active participants in managing their own health information and the health information of the ones they ...
Challenges When Engaging Diabetic Patients and Their Clinicians in Using E-Health Technologies to Improve Clinical Outcomes
Proceedings of the 8th International Conference on Universal Access in Human-Computer Interaction. Aging and Assistive Environments - Volume 8515

Diabetes mellitus DM is a chronic disease affecting more than 285 people worldwide and the fourth leading cause of death. Increasing evidence suggests that many DM patients have poor adherence with prescribed medication therapies, impacting clinical ...
Perioperative Smartphone Apps and Devices for Patient-Centered Care

Smartphones have grown in ubiquity and computing power, and they play an ever-increasing role in patient-centered health care. The "medicalized smartphone" not only enables web-based access to patient health resources, but also can run patient-oriented ...

Comments

Information & Contributors

Information

Published In

IDC '18: Proceedings of the 17th ACM Conference on Interaction Design and Children

June 2018

789 pages

ISBN:9781450351522

DOI:10.1145/3202185

Conference Chairs:
Michail N. Giannakos
Norwegian University of Science and Technology, Norway
,
Letizia Jaccheri
Norwegian University of Science and Technology, Norway
,
Monica Divitini
Norwegian University of Science and Technology, Norway

Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 19 June 2018

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Research-article

Conference

IDC '18

Sponsor:

SIGCHI

IDC '18: Interaction Design and Children

June 19 - 22, 2018

Trondheim, Norway

Acceptance Rates

IDC '18 Paper Acceptance Rate 28 of 96 submissions, 29%;

Overall Acceptance Rate 172 of 578 submissions, 30%

Upcoming Conference

IDC '25

Sponsor:
sigchi

Interaction Design and Children

June 23 - 26, 2025

Reykjavik , Iceland

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

11
Total Citations
View Citations
567
Total Downloads

Downloads (Last 12 months)111
Downloads (Last 6 weeks)17

Reflects downloads up to 19 Feb 2025

Other Metrics

View Author Metrics

Citations

Cited By

View all

Barbazi NShin JHiremath GLauff C(2025)Exploring Health Educational Interventions for Children With Congenital Heart Disease: Scoping ReviewJMIR Pediatrics and Parenting10.2196/648148(e64814)Online publication date: 24-Jan-2025
https://doi.org/10.2196/64814
Barbazi NShin JHiremath GLauff C(2024)Developing Assessment for Key Stakeholders in Pediatric Congenital Heart Disease: A Qualitative Pilot Study to Inform Designing a Medical Education Toy (Preprint)JMIR Formative Research10.2196/63818Online publication date: 30-Jun-2024
https://doi.org/10.2196/63818
Tennant RAllana SMercer KBurns C(2024)Capturing Home Care Information Management and Communication Processes Among Caregivers of Older Adults: Qualitative Study to Inform Technology DesignJMIR Formative Research10.2196/532898(e53289)Online publication date: 4-Jul-2024
https://doi.org/10.2196/53289
Bowers CTomlinson AGaskin KWray J(2024)CHAT2App: Supporting Caregivers of Infants with Congenital Heart DiseaseExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3637450(1-9)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613905.3637450
Sepehri KHolsti LNiasati SChan VMaclean K(2023)Beyond the Bulging Binder: Family-Centered Design of a Digital Health Information Management System for Caregivers of Children Living with Health ComplexityProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3581459(1-19)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3581459
Gilley KBaroudi LYu MGainsburg IReddy NBradley CCislo CRozwadowski MClingan CDeMoss MChuray TBirditt KColabianchi NChowdhury MForger DGagnier JZernicke RCunningham JCain STewari MChoi S(2021)Risk Factors for COVID-19 in College Students Identified by Physical, Mental, and Social Health Reported During the Fall 2020 Semester: An Observational Study Using the Roadmap app and Fitbit Wearable Sensors (Preprint)JMIR Mental Health10.2196/34645Online publication date: 3-Nov-2021
https://doi.org/10.2196/34645
Tennant RAllana SMercer KBurns C(2021)Exploring the Experiences of Family Caregivers of Children with Special Health Care Needs to Inform the Design of Digital Health Systems: A Formative Qualitative Study (Preprint)JMIR Formative Research10.2196/28895Online publication date: 18-Mar-2021
https://doi.org/10.2196/28895
Van Mechelen MBaykal GDindler CEriksson EIversen ORubegni EVasalou AParés NSawhney N(2020)18 Years of ethics in child-computer interaction researchProceedings of the Interaction Design and Children Conference10.1145/3392063.3394407(161-183)Online publication date: 21-Jun-2020
https://dl.acm.org/doi/10.1145/3392063.3394407
Hong MLakshmi UDo KPrahalad SOlson TArriaga RWilcox LBernhaupt RMueller FVerweij DAndres JMcGrenere JCockburn AAvellino IGoguey ABjørn PZhao SSamson BKocielnik R(2020)Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental CaregiversProceedings of the 2020 CHI Conference on Human Factors in Computing Systems10.1145/3313831.3376426(1-16)Online publication date: 21-Apr-2020
https://dl.acm.org/doi/10.1145/3313831.3376426
Kedroske JKoblick SChaar DMazzoli AO'Brien MYahng LVue RChappell GShin JHanauer DChoi S(2019)Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: A Qualitative Study of Cognitive Interviews and Verbal Probing (Preprint)JMIR Formative Research10.2196/17077Online publication date: 15-Nov-2019
https://doi.org/10.2196/17077
Show More Cited By

View Options

View options

PDF

View or Download as a PDF file.

PDF

eReader

View online with eReader.

eReader

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Cited By

Index Terms

Recommendations

Designing Patient-Centered Personal Health Records (PHRs): Health Care Professionals' Perspective on Patient-Generated Data

Challenges When Engaging Diabetic Patients and Their Clinicians in Using E-Health Technologies to Improve Clinical Outcomes

Perioperative Smartphone Apps and Devices for Patient-Centered Care