Children's perspectives on pain-logging: Insights from a Co-Design Approach
Authors: 
Linda Price, Irum Rauf, 
Daniel Gooch, Dmitri Katz, Oliver Pearce, Blaine PriceAuthors Info & Claims
Pages 1306 - 1318
Abstract
Pain is an essential indicator of health and guides clinical treatments. Logging pain is important in supporting this. However, there is little research into pre-adolescent children's pain logging tools. Utilising the Bluebells method to engage children as co-designers, we gathered children's perspectives on pain-logging tools; in the first workshop by using tangible design approaches to support creative thinking, and in the second workshop by discussing developed prototypes based on the children's designs. Our findings highlight design concepts that the research team – despite many years of pain-related research – had not considered in the context of paediatric logging, namely a) prioritizing children's privacy in social settings while using pain-logging tools; b) emphasizing personalization to boost engagement; and c) logging general well-being of children alongside pain intensity to collect more insightful data. These findings thus demonstrate the value of co-designing pain-logging technologies with children.
Supplemental Material
PDF File
Thematic Analysis Data and prompt questions from workshops
- Download
- 316.25 KB
PDF File
Appendices showing prompt questions and thematic analysis data.
- Download
- 316.25 KB
References
[1]
Phil Adams, Elizabeth L. Murnane, Michael Elfenbein, Elaine Wethington, and Geri Gay. 2017. Supporting the Self-Management of Chronic Pain Conditions with Tailored Momentary Self-Assessments. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems, May 02, 2017. ACM, Denver Colorado USA, 1065–1077. https://doi.org/10.1145/3025453.3025832
[2]
Gaurav Bansal, Fatemeh “Mariam” Zahedi, and David Gefen. 2010. The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online. Decision Support Systems 49, 2 (May 2010), 138–150. https://doi.org/10.1016/j.dss.2010.01.010
[3]
Paul Bate and Glenn Robert. 2006. Experience‐based design: from redesigning the system around the patient to co‐designing services with the patient. Qual Saf Health Care 15, 5 (October 2006), 307–310. https://doi.org/10.1136/qshc.2005.016527
[4]
Kathryn A. Birnie, Fiona Campbell, Cynthia Nguyen, Chitra Lalloo, Argerie Tsimicalis, Clyde Matava, Joseph Cafazzo, and Jennifer Stinson. 2019. iCanCope PostOp: User-Centered Design of a Smartphone-Based App for Self-Management of Postoperative Pain in Children and Adolescents. JMIR Formative Research 3, 2 (April 2019), e12028. https://doi.org/10.2196/12028
[5]
Virginia Braun and Victoria Clarke. 2012. Thematic analysis. In APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological. American Psychological Association, Washington, DC, US, 57–71. https://doi.org/10.1037/13620-004
[6]
Virginia Braun and Victoria Clarke. 2013. Successful qualitative research: a practical guide for beginners. SAGE, Los Angeles.
[7]
Maggie H. Bromberg, Mark Connelly, Kelly K. Anthony, Karen M. Gil, and Laura E. Schanberg. 2016. Prospective Mediation Models of Sleep, Pain and Daily Function in Children with Arthritis using Ecological Momentary Assessment. Clin J Pain 32, 6 (June 2016), 471–477. https://doi.org/10.1097/AJP.0000000000000298
[8]
Sonia Butler, Dean Sculley, Derek Santos, Antoni Fellas, Xavier Gironès, Davinder Singh-Grewal, and Andrea Coda. 2022. Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis. Journal of Medical Internet Research 24, 2 (February 2022), e30457. https://doi.org/10.2196/30457
[9]
Gene Chipman, Allison Druin, Dianne Beer, Jerry Alan Fails, Mona Leigh Guha, and Sante Simms. 2006. A case study of tangible flags: a collaborative technology to enhance field trips. In Proceedings of the 2006 conference on Interaction design and children, June 07, 2006. ACM, Tampere Finland, 1–8. https://doi.org/10.1145/1139073.1139081
[10]
Reinie Cordier, Nicole Brown, Yu-Wei Chen, Sarah Wilkes-Gillan, and Torbjorn Falkmer. 2016. Piloting the use of experience sampling method to investigate the everyday social experiences of children with Asperger syndrome/high functioning autism. Developmental Neurorehabilitation (March 2016). Retrieved January 12, 2024 from https://www.tandfonline.com/doi/full/10.3109/17518423.2014.915244
[11]
Gavin Doherty, David Coyle, and Mark Matthews. 2010. Design and evaluation guidelines for mental health technologies. Interacting with Computers 22, 4 (July 2010), 243–252. https://doi.org/10.1016/j.intcom.2010.02.006
[12]
Amy L. Drendel, Brian T. Kelly, and Samina Ali. 2011. Pain Assessment for Children: Overcoming Challenges and Optimizing Care. Pediatric Emergency Care 27, 8 (August 2011), 773–781. https://doi.org/10.1097/PEC.0b013e31822877f7
[13]
Allison Druin. 1998. The design of children's technology. Morgan Kaufmann Publishers Inc.
[14]
Allison Druin. 2002. The role of children in the design of new technology. Behaviour and information technology 21, 1 (2002), 1–25.
[15]
Allison Druin. 2005. What children can teach us: Developing digital libraries for children with children. The library quarterly 75, 1 (2005), 20–41.
[16]
Fatemeh Ebrahimpour, Shahzad Pashaeypoor, Waliu Jawula Salisu, Mohammad Ali Cheraghi, and Akram Sadat Sadat Hosseini. 2019. Children's description of pain through drawings and dialogs: A concept analysis. Nurs Open 6, 2 (April 2019), 301–312. https://doi.org/10.1002/nop2.211
[17]
Christina Fyhn. 2019. A Tangible Understanding of Chronic Pain. June 03, 2019. . https://doi.org/10.21606/nordes.2019.002
[18]
Christina Fyhn and Jacob Buur. 2020. Chronic Pain Scales in Tangible Materials. In Proceedings of the Fourteenth International Conference on Tangible, Embedded, and Embodied Interaction, February 09, 2020. ACM, Sydney NSW Australia, 811–822. https://doi.org/10.1145/3374920.3375003
[19]
Cathy Grundy, Lyn Pemberton, and Richard Morris. 2012. Characters as agents for the co-design process. In Proceedings of the 11th International Conference on Interaction Design and Children, June 12, 2012. ACM, Bremen Germany, 180–183. https://doi.org/10.1145/2307096.2307120
[20]
Mona Leigh Guha, Allison Druin, Gene Chipman, Jerry Alan Fails, Sante Simms, and Allison Farber. 2004. Mixing ideas: a new technique for working with young children as design partners. In Proceedings of the 2004 conference on Interaction design and children: building a community, 2004. 35–42.
[21]
Mona Leigh Guha, Allison Druin, and Jerry Alan Fails. Cooperative Inquiry Revisited: Reflections of the Past and Guidelines for the Future of Intergenerational Co-design.
[22]
Saee Hamine, Emily Gerth-Guyette, Dunia Faulx, Beverly B. Green, and Amy Sarah Ginsburg. 2015. Impact of mHealth Chronic Disease Management on Treatment Adherence and Patient Outcomes: A Systematic Review. Journal of Medical Internet Research 17, 2 (February 2015), e3951. https://doi.org/10.2196/jmir.3951
[23]
Kristin E. Heron, Robin S. Everhart, Susan M. McHale, and Joshua M. Smyth. 2017. Using Mobile-Technology-Based Ecological Momentary Assessment (EMA) Methods With Youth: A Systematic Review and Recommendations. Journal of Pediatric Psychology 42, 10 (November 2017), 1087–1107. https://doi.org/10.1093/jpepsy/jsx078
[24]
Carrie L. Hicks, Carl L. von Baeyer, Pamela A. Spafford, Inez van Korlaar, and Belinda Goodenough. 2001. The Faces Pain Scale – Revised: toward a common metric in pediatric pain measurement. Pain 93, 2 (August 2001), 173–183. https://doi.org/10.1016/S0304-3959(01)00314-1
[25]
Lars Erik Holmquist. 2023. Bits are Cheap, Atoms are Expensive: Critiquing the Turn Towards Tangibility in HCI. In Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems, April 19, 2023. ACM, Hamburg Germany, 1–8. https://doi.org/10.1145/3544549.3582744
[26]
Juan Pablo Hourcade. 2007. Interaction Design and Children. FNT in Human-Computer Interaction 1, 4 (2007), 277–392. https://doi.org/10.1561/1100000006
[27]
Luke Hutton, Blaine A. Price, Ryan Kelly, Ciaran McCormick, Arosha K. Bandara, Tally Hatzakis, Maureen Meadows, and Bashar Nuseibeh. 2018. Assessing the Privacy of mHealth Apps for Self-Tracking: Heuristic Evaluation Approach. JMIR mHealth and uHealth 6, 10 (October 2018), e9217. https://doi.org/10.2196/mhealth.9217
[28]
Robert N. Jamison, Stephen A. Raymond, Jonathan G. Levine, Ellen A. Slawsby, Srdjan S. Nedeljkovic, and Nathaniel P. Katz. 2001. Electronic diaries for monitoring chronic pain: 1-year validation study. Pain 91, 3 (April 2001), 277–285. https://doi.org/10.1016/S0304-3959(00)00450-4
[29]
Lisa Folkmarson Käll. 2012. Dimensions of Pain: Humanities and Social Science Perspectives. Routledge.
[30]
Rebecca Kelly, Emanuela Mazzone, Matthew Horton, and Janet Read. 2006. Bluebells: a design method for child-centred product development. https://doi.org/10.1145/1182475.1182513
[31]
Tanja Könen, Judith Dirk, and Florian Schmiedek. 2015. Cognitive benefits of last night's sleep: daily variations in children's sleep behavior are related to working memory fluctuations. Journal of Child Psychology and Psychiatry 56, 2 (2015), 171–182. https://doi.org/10.1111/jcpp.12296
[32]
Yalinie Kulandaivelu, Chitra Lalloo, Richard Ward, Melanie Kirby-Allen, Vicky R Breakey, Isaac Odame, Fiona Campbell, Khush Amaria, Ewurabena A Simpson, Cynthia Nguyen, Tessy George, and Jennifer N Stinson. 2018. Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study. (2018), 14.
[33]
Chitra Lalloo, Amos Hundert, Lauren Harris, Quynh Pham, Fiona Campbell, Jill Chorney, Bruce Dick, Mark Simmonds, Joseph Cafazzo, and Jennifer Stinson. 2019. Capturing Daily Disease Experiences of Adolescents With Chronic Pain: mHealth-Mediated Symptom Tracking. JMIR mHealth and uHealth 7, 1 (January 2019), e11838. https://doi.org/10.2196/11838
[34]
Chitra Lalloo, Lindsay A. Jibb, Jordan Rivera, Arnav Agarwal, and Jennifer N. Stinson. 2015. “There's a Pain App for That.” The Clinical Journal of Pain 31, 6 (June 2015), 557–563. https://doi.org/10.1097/AJP.0000000000000171
[35]
Chitra Lalloo, Fareha Nishat, William Zempsky, Nitya Bakshi, Sherif Badawy, Yeon Joo Ko, Carlton Dampier, Jennifer Stinson, and Tonya M Palermo. 2022. Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial. JOURNAL OF MEDICAL INTERNET RESEARCH (2022), 17.
[36]
G. B. Langley and H. Sheppeard. 1985. The visual analogue scale: Its use in pain measurement. Rheumatol Int 5, 4 (July 1985), 145–148. https://doi.org/10.1007/BF00541514
[37]
Rebecca Rachael Lee, Stephanie Shoop-Worrall, Amir Rashid, Wendy Thomson, and Lis Cordingley. 2020. “Asking Too Much?”: Randomized N-of-1 Trial Exploring Patient Preferences and Measurement Reactivity to Frequent Use of Remote Multidimensional Pain Assessments in Children and Young People With Juvenile Idiopathic Arthritis. Journal of Medical Internet Research 22, 1 (January 2020), e14503. https://doi.org/10.2196/14503
[38]
Amanda Lenhart. 2015. Teens, Social Media & Technology Overview 2015. (April 2015). Retrieved January 11, 2024 from https://policycommons.net/artifacts/619187/teens-social-media-technology-overview-2015/1600266/
[39]
Susanne Lindberg. 2013. Participatory design workshops with children with cancer: lessons learned. New York (2013), 4.
[40]
Muhammad Maarj, Verity Pacey, Louise Tofts, Matthew Clapham, Xavier Gironès Garcia, and Andrea Coda. 2022. Validation of an Electronic Visual Analog Scale App for Pain Evaluation in Children and Adolescents With Symptomatic Hypermobility: Cross-sectional Study. JMIR Pediatrics and Parenting 5, 4 (October 2022), e41930. https://doi.org/10.2196/41930
[41]
Margo McCaffery and Chris Pasero. 1999. Teaching Patients to Use a Numerical Pain-Rating Scale. AJN The American Journal of Nursing 99, 12 (December 1999), 22.
[42]
Patricia A. McGrath and Joanne Gillespie. 2001. Pain assessment in children and adolescents. In Handbook of pain assessment, 2nd ed. The Guilford Press, New York, NY, US, 97–118.
[43]
Vikram Mehta, Arosha K. Bandara, Blaine A. Price, Bashar Nuseibeh, and Daniel Gooch. 2021. Up Close & Personal: Exploring User-preferred Image Schemas for Intuitive Privacy Awareness and Control. In Proceedings of the Fifteenth International Conference on Tangible, Embedded, and Embodied Interaction, February 14, 2021. ACM, Salzburg Austria, 1–13. https://doi.org/10.1145/3430524.3440626
[44]
Neema Moraveji, Jason Li, Jiarong Ding, Patrick O'Kelley, and Suze Woolf. 2007. Comicboarding: using comics as proxies for participatory design with children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, April 29, 2007. ACM, San Jose California USA, 1371–1374. https://doi.org/10.1145/1240624.1240832
[45]
Frank Murray, Pamela Hufnagel, Howard Gruber, and Jacques Vonèche. 1979. The Essential Piaget. Educational Researcher 8, (December 1979). https://doi.org/10.2307/1174291
[46]
Tonya M Palermo, Duaré Valenzuela, and Paul P Stork. 2004. A randomized trial of electronic versus paper pain diaries in children: impact on compliance, accuracy, and acceptability. Pain 107, 3 (February 2004), 213–219. https://doi.org/10.1016/j.pain.2003.10.005
[47]
Tonya M Palermo, William T Zempsky, Carlton D Dampier, Chitra Lalloo, Amos S Hundert, Lexa K Murphy, Nitya Bakshi, and Jennifer N Stinson. 2019. iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease. (2019), 19.
[48]
Mario A. Pfannstiel and Christoph Rasche. 2018. Service Design and Service Thinking in Healthcare and Hospital Management: Theory, Concepts, Practice. Springer.
[49]
J. Piaget. 1964. Cognitive Development-in-Children. Journal of Research in Science Teaching 2, (1964), 176–186.
[50]
J. Piaget. 1972. Intellectual Evolution from Adolescence to Adulthood. Human Development 15, 1 (1972), 1–12. https://doi.org/10.1159/000271225
[51]
Jean Piaget. 1977. Epistemology and psychology of functions. Springer Science & Business Media.
[52]
Blaine A. Price, Ryan Kelly, Vikram Mehta, Ciaran McCormick, Hanad Ahmed, and Oliver Pearce. 2018. Feel My Pain: Design and Evaluation of Painpad, a Tangible Device for Supporting Inpatient Self-Logging of Pain. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems, April 19, 2018. ACM, Montreal QC Canada, 1–13. https://doi.org/10.1145/3173574.3173743
[53]
Karianne Rygh and Simon Clatworthy. 2019. The Use of Tangible Tools as a Means to Support Co-design During Service Design Innovation Projects in Healthcare. In Service Design and Service Thinking in Healthcare and Hospital Management: Theory, Concepts, Practice, Mario A. Pfannstiel and Christoph Rasche (eds.). Springer International Publishing, Cham, 93–115. https://doi.org/10.1007/978-3-030-00749-2_7
[54]
Elizabeth B.-N. Sanders, Eva Brandt, and Thomas Binder. 2010. A framework for organizing the tools and techniques of participatory design. In Proceedings of the 11th Biennial Participatory Design Conference on - PDC ’10, 2010. ACM Press, Sydney, Australia, 195. https://doi.org/10.1145/1900441.1900476
[55]
Douglas Schuler and Aki Namioka. 1993. Participatory Design: Principles and Practices. CRC Press.
[56]
Angela Sinickas. 2007. Finding a Cure for Survey Fatigue. Strategic Communication Management 11, 2 (March 2007), 11.
[57]
Elena Slavutskaya* and Leonid Slavutskii. 2019. Dynamics Of Personality Development In Pre-Adolescence: Longitudinal Study. December 28, 2019. 2944–2951. https://doi.org/10.15405/epsbs.2019.12.04.396
[58]
S. M. Smith, B. Sumar, and K. A. Dixon. 2014. Musculoskeletal pain in overweight and obese children. Int J Obes 38, 1 (January 2014), 11–15. https://doi.org/10.1038/ijo.2013.187
[59]
Jennifer Stinson, Lindsay Jibb, Cynthia Nguyen, Paul Nathan, Anne Maloney, Lee Dupuis, J Gerstle, Benjamin Alman, Sevan Hopyan, Caron Strahlendorf, Carol Portwine, Donna Johnston, and Mike Orr. 2013. Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer. Journal of medical Internet research 15, (March 2013), e51. https://doi.org/10.2196/jmir.2350
[60]
Jennifer N Stinson, Chitra Lalloo, Lauren Harris, Lisa Isaac, Fiona Campbell, Stephen Brown, Danielle Ruskin, Allan Gordon, Marilyn Galonski, Leah R Pink, Norman Buckley, James L Henry, Meghan White, and Allia Karim. 2014. iCanCope with Pain TM: User-Centred Design of a Web- and Mobile-Based Self-Management Program for Youth with Chronic Pain Based on Identified Health Care Needs. Pain Research and Management 19, 5 (2014), 257–265. https://doi.org/10.1155/2014/935278
[61]
Jennifer N. Stinson, Guy C. Petroz, Gordon Tait, Brian M. Feldman, David Streiner, Patrick J. McGrath, and Bonnie J. Stevens. 2006. e-Ouch: usability testing of an electronic chronic pain diary for adolescents with arthritis. Clin J Pain 22, 3 (April 2006), 295–305. https://doi.org/10.1097/01.ajp.0000173371.54579.31
[62]
Arthur A Stone, Saul Shiffman, Joseph E Schwartz, Joan E Broderick, and Michael R Hufford. 2002. Patient non-compliance with paper diaries. BMJ 324, 7347 (May 2002), 1193–1194.
[63]
Mary D. Tesler, Marilyn C. Savedra, William L. Holzemer, Diana J. Wilkie, Judith Ann Ward, and Steven M. Paul. 1991. The word-graphic rating scale as a measure of children's and adolescents’ pain intensity. Research in Nursing & Health 14, 5 (1991), 361–371. https://doi.org/10.1002/nur.4770140507
[64]
Evelyne D Trottier, Samina Ali, Marie-Joëlle Doré-Bergeron, and Laurel Chauvin-Kimoff. 2022. Best practices in pain assessment and management for children. Paediatrics & Child Health 27, 7 (December 2022), 429–437. https://doi.org/10.1093/pch/pxac048
[65]
Julia Truscott and Laura Benton. 2022. What is a researcher? [Full Version]. (2022), 289428690 Bytes. https://doi.org/10.5522/04/20509023.V1
[66]
Sudip Vhaduri and Christian Poellabauer. 2016. Human Factors in the Design of Longitudinal Smartphone-based Wellness Surveys. https://doi.org/10.1109/ICHI.2016.24
[67]
Van Zwanenberg. 2023. Should children really have their own smartphones? Priory. Retrieved January 11, 2024 from http://www.priorygroup.com/blog/should-children-really-have-their-own-smartphones
[68]
2023. WHO issues new guidelines on the management of chronic pain in children. Retrieved August 11, 2023 from https://www.who.int/news/item/01-02-2021-who-issues-new-guidelines-on-the-management-of-chronic-pain-in-children
[69]
IASP Announces Revised Definition of Pain. International Association for the Study of Pain (IASP). Retrieved January 15, 2024 from https://www.iasp-pain.org/publications/iasp-news/iasp-announces-revised-definition-of-pain/
[70]
Measurements of pain in children: generalizability and validity of the pain ladder and the poker chip tool | CiNii Research. Retrieved January 15, 2024 from https://cir.nii.ac.jp/crid/1574231875481115648
Index Terms
- Children's perspectives on pain-logging: Insights from a Co-Design Approach
Recommendations
Understanding How Parents Deal With the Health Advice They Receive: A Qualitative Study and Implications for the Design of Message-based Health Dissemination Systems for Child Health
DIS '24: Proceedings of the 2024 ACM Designing Interactive Systems ConferenceMessage-based health information dissemination systems can potentially improve maternal and child health (MCH). By conveying health information to parents, SMS- and chatbot-based systems can support parents’ learning and empower them to make better ...
Understanding Design Preferences for Robots for Pain Management: A Co-Design Study
HRI '22: Proceedings of the 2022 ACM/IEEE International Conference on Human-Robot InteractionThere is growing interest in psychological interventions using socially assistive robots to mitigate distress and pain in the pediatric population. This work seeks to address the deficit in understanding of what features and functionality young children ...
Children with ADHD and their Care Ecosystem: Designing Beyond Symptoms
CHI '23: Proceedings of the 2023 CHI Conference on Human Factors in Computing SystemsDesigning for children with ADHD has been of increasing interest to the HCI community. However, current approaches do not adequately involve all relevant stakeholders, and primarily focus on addressing symptoms, following a medical model of disability ...
Comments
Please enable JavaScript to view thecomments powered by Disqus.Information & Contributors
Information
Published In
July 2024
3616 pages
ISBN:9798400705830
DOI:10.1145/3643834
Copyright © 2024 Owner/Author.
This work is licensed under a Creative Commons Attribution International 4.0 License.
Sponsors
Publisher
Association for Computing Machinery
New York, NY, United States
Publication History
Published: 01 July 2024
Check for updates
Author Tags
Qualifiers
- Research-article
- Research
- Refereed limited
Funding Sources
- UKRI Engineering and Physical Sciences Research Council
Conference
DIS '24
Sponsor:
Acceptance Rates
Overall Acceptance Rate 1,158 of 4,684 submissions, 25%
Upcoming Conference
DIS '25
- Sponsor:
- sigchi
Contributors
Other Metrics
Bibliometrics & Citations
Bibliometrics
Article Metrics
- 0Total Citations
- 311Total Downloads
- Downloads (Last 12 months)311
- Downloads (Last 6 weeks)39
Reflects downloads up to 03 Mar 2025
Other Metrics
Citations
View Options
View options
View or Download as a PDF file.
PDFeReader
View online with eReader.
eReaderHTML Format
View this article in HTML Format.
HTML FormatLogin options
Check if you have access through your login credentials or your institution to get full access on this article.
Sign in