research-article

Public Access

Challenges in the Parent-Child Communication of Health-related Information in Pediatric Cancer Care

Authors:

Ayse G. Buyuktur,

Sun Young ParkAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 5, Issue CSCW1

Article No.: 110, Pages 1 - 24

https://doi.org/10.1145/3449184

Published: 22 April 2021 Publication History

Abstract

Previous works have shown that effective communication between parental caregivers and child patients has many benefits to the children, such as providing emotional support and coping skills for health management. Drawing on semi-structured interviews, we have identified the challenges parental caregivers face when communicating with their children about health-related information in daily illness management. Three salient challenges that the parental caregivers encountered include: (i) acknowledging different perceptions and approaches to being a cancer patient, (ii) choosing an appropriate communication method, and (iii) understanding their child's uncommunicated emotions. Based on these challenges, we recognize distinctive, yet implicit, needs that children develop during the illness trajectory, affecting the parent-child dyadic relationship. We discuss design opportunities for a collaborative system that enhances the parent-child dyadic communication by supporting the child's implicit and dynamically changing needs throughout the illness trajectory and beyond.

References

[1]

[n.d.]. PROMIS: Patient-Reported Outcomes Measurement Information System. http://www.healthmeasures.net/ explore-measurement-systems/promis

[2]

[n.d.]. Support for Families When a Child Has Cancer. https://www.cancer.gov/about-cancer/coping/caregiver- support/parents

[3]

Annarita Adduci, Momcilo Jankovic, Sandra Strazzer, Maura Massimino, Carlo Clerici, and Geraldina Poggi. 2012. Parent-child communication and psychological adjustment in children with a brain tumor. Pediatric blood & cancer 59, 2 (2012), 290--294.

[4]

Paula L Antognoli-Toland. 2001. Parent-child relationship, family structure, and loneliness among adolescents. Adolescent & Family Health (2001).

[5]

Marleen Van Bergeijk, Bart Hengeveld, and Selma Otto. 2017. Dok: Enhancing Child Patient Empowerment. Proceedings of the Tenth International Conference on Tangible, Embedded, and Embodied Interaction - TEI 17 (2017). https://doi.org/ 10.1145/3024969.3025066

Digital Library

[6]

David K Berlo. 1977. Communication as process: Review and commentary. Annals of the International Communication Association 1, 1 (1977), 11--27.

[7]

Hugh Beyer and Karen Holtzblatt. 2000. Contextual design defning customer-centered systems. Morgan Kaufmann.

[8]

Arlene M Butz, Jennifer M Walker, Margaret Pulsifer, and Marilyn Winkelstein. 2007. Shared decision making in school age children with asthma. Pediatric nursing 33, 2 (2007), 111.

[9]

Sally-Ann Clarke, Helena Davies, Meriel Jenney, Adam Glaser, and Christine Eiser. 2005. Parental communication and children's behaviour following diagnosis of childhood leukaemia. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer 14, 4 (2005), 274--281.

[10]

Rebecca JW Cline, Felicity WK Harper, Louis A Penner, Amy M Peterson, Jefrey W Taub, and Terrance L Albrecht. 2006. Parent communication and child pain and distress during painful pediatric cancer treatments. Social science & medicine 63, 4 (2006), 883--898.

[11]

EA Ely. 1997. Collaborative practice with children and parents. Enhancing preparation for and management of cancer treatment. Cancer practice 5, 6 (1997), 387--390.

[12]

Cynthia Foronda, Karina Gattamorta, Kenya Snowden, and Eric B Bauman. 2014. Use of virtual clinical simulation to improve communication skills of baccalaureate nursing students: A pilot study. Nurse education today 34, 6 (2014), e53--e57.

[13]

Ernest VE Hodges, Regina A Finnegan, and David G Perry. 1999. Skewed autonomy--relatedness in preadolescents' conceptions of their relationships with mother, father, and best friend. Developmental Psychology 35, 3 (1999), 737.

[14]

Matthew K Hong, Udaya Lakshmi, Kimberly Do, Sampath Prahalad, Thomas Olson, Rosa I Arriaga, and Lauren Wilcox. 2020. Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental Caregivers. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. 1--16.

Digital Library

[15]

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. ACM, 5337--5349.

Digital Library

[16]

Juan Pablo Hourcade, Martha Driessnack, and Kelsey E Huebner. 2012. Supporting face-to-face communication between clinicians and children with chronic headaches through a zoomable multi-touch app. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 2609--2618.

Digital Library

[17]

Sarah S Jaser and Margaret Grey. 2010. A pilot study of observed parenting and adjustment in adolescents with type 1 diabetes and their mothers. Journal of pediatric psychology 35, 7 (2010), 738--747.

[18]

Sooyeon Jeong, Cynthia Breazeal, Deirdre Logan, and Peter Weinstock. 2018. Huggable: the impact of embodiment on promoting socio-emotional interactions for young pediatric inpatients. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1--13.

Digital Library

[19]

Eunkyung Jo, Hyeonseok Bang, Myeonghan Ryu, Eun Jee Sung, Sungmook Leem, and Hwajung Hong. 2020. MAMAS: Supporting Parent--Child Mealtime Interactions Using Automated Tracking and Speech Recognition. Proceedings of the ACM on Human-Computer Interaction 4, CSCW1 (2020), 1--32.

Digital Library

[20]

Erin M Johnson, Melinda F Hamilton, R Scott Watson, Rene Claxton, Michael Barnett, Ann E Thompson, and Robert Arnold. 2017. An Intensive, Simulation-Based Communication Course for Pediatric Critical Care Medicine (PCCM) Fellows. Pediatric critical care medicine: a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies 18, 8 (2017), e348.

[21]

Erica C Kaye, Jared Rubenstein, Deena Levine, Justin N Baker, Devon Dabbs, and Sarah E Friebert. 2015. Pediatric palliative care in the community. CA: a cancer journal for clinicians 65, 4 (2015), 315--333.

[22]

Julie A Kientz, Rosa I Arriaga, and Gregory D Abowd. 2009. Baby steps: evaluation of a system to support record- keeping for parents of young children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 1713--1722.

Digital Library

[23]

Vicky Lehmann, Helena Grönqvist, Gunn Engvall, Malin Ander, Marrit A Tuinman, Mariët Hagedoorn, Robbert Sanderman, Elisabet Mattsson, and Louise von Essen. 2014. Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden. Psycho-oncology 23, 11 (2014), 1229--1235.

[24]

Zeina Atrash Leong and Michael S Horn. 2014. Waiting for learning: designing interactive education materials for patient waiting areas. In Proceedings of the 2014 conference on Interaction design and children. 145--153.

Digital Library

[25]

Szu-Chia Lu, Andy Wu, and Ellen Yi-Luen Do. 2011. mediPuppet: an interactive comforting companion for children while visiting a doctor. In Proceedings of the 8th ACM conference on Creativity and cognition. ACM, 367--368.

Digital Library

[26]

Gabriela Marcu, Anind K Dey, and Sara Kiesler. 2012. Parent-driven use of wearable cameras for autism support: a feld study with families. In Proceedings of the 2012 ACM Conference on Ubiquitous Computing. ACM, 401--410.

Digital Library

[27]

Andrew D Miller, Sonali R Mishra, Logan Kendall, Shefali Haldar, Ari H Pollack, and Wanda Pratt. 2016. Partners in care: design considerations for caregivers and patients during a hospital stay. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. 756--769.

Digital Library

[28]

Lexa K Murphy, Kristopher J Preacher, Jason D Rights, Erin M Rodriguez, Heather Bemis, Leandra Desjardins, Kemar Prussien, Adrien M Winning, Cynthia A Gerhardt, Kathryn Vannatta, et al. 2018. Maternal communication in childhood cancer: Factor analysis and relation to maternal distress. Journal of pediatric psychology 43, 10 (2018), 1114--1127.

[29]

Sarah J Naber, Lois K Halstead, Marion E Broome, and Maureen Rehwaldt. 1995. Communication and control: Parent, child, and health care professional interactions during painful procedures. Issues in Comprehensive Pediatric Nursing 18, 2 (1995), 79--90.

[30]

Nikhila Nyapathy and Rosa I Arriaga. 2019. Tracking and Reporting Asthma Data for Children. In Conference Companion Publication of the 2019 on Computer Supported Cooperative Work and Social Computing. 330--334.

[31]

Cecilia Olsson. 2004. Dyadic interaction with a child with multiple disabilities: A system theory perspective on communication. Augmentative and Alternative Communication 20, 4 (2004), 228--242.

[32]

Carla Parry and Mark A Chesler. 2005. Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research 15, 8 (2005), 1055--1073.

[33]

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 Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (Portland, Oregon, USA) (CSCW '17). Association for Computing Machinery, New York, NY, USA, 2300--2315.

Digital Library

[34]

Madhu Reddy and Paul Dourish. 2002. A fnger on the pulse: temporal rhythms and information seeking in medical work. In Proceedings of the 2002 ACM conference on Computer supported cooperative work. 344--353.

Digital Library

[35]

Erin M Rodriguez, Madeleine J Dunn, Teddi Zuckerman, Leighann Hughart, Kathryn Vannatta, Cynthia A Gerhardt, Megan Saylor, C Melanie Schuele, and Bruce E Compas. 2013. Mother--child communication and maternal depressive symptoms in families of children with cancer: Integrating macro and micro levels of analysis. Journal of pediatric psychology 38, 7 (2013), 732--743.

[36]

Alan Russell, Jacqueline Mize, and Kerry Bissaker. 2002. Parent-child relationships. Blackwell handbook of childhood social development (2002), 205--222.

[37]

Christoph Rutishauser. 2003. Communicating with young people. Paediatric respiratory reviews 4, 4 (2003), 319--324.

[38]

Heeyeon Son, Joan Haase, and Sharron L Docherty. 2019. Parent-child communication in a childhood cancer context: A literature review. Pediatric Nursing 45, 3 (2019), 129--141.

[39]

Seokwoo Song, Juho Kim, Bumsoo Kang, Wonjeong Park, and John Kim. 2018. BebeCODE: Collaborative Child Development Tracking System. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1--12.

Digital Library

[40]

Anselm Strauss and Juliet M Corbin. 1997. Grounded theory in practice. Sage.

[41]

Hyewon Suh, John R. Porter, Alexis Hiniker, and Julie A. Kientz. 2014. @BabySteps: Design and Evaluation of a System for Using Twitter for Tracking Children's Developmental Milestones. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (Toronto, Ontario, Canada) (CHI '14). ACM, New York, NY, USA, 2279--2288. https://doi.org/10.1145/2556288.2557386

Digital Library

[42]

Hyewon Suh, John R Porter, Robert Racadio, Yi-Chen Sung, and Julie A Kientz. 2016. Baby Steps Text: Feasibility Study of an SMS-Based Tool for Tracking Children's Developmental Progress. In AMIA Annual Symposium Proceedings, Vol. 2016. American Medical Informatics Association, 1997.

[43]

Tammy Toscos, Kay Connelly, and Yvonne Rogers. 2012. Best intentions: health monitoring technology and children. In Proceedings of the SIGCHI conference on Human Factors in Computing Systems. 1431--1440.

Digital Library

[44]

Aaron K Vallance, Ashish Hemani, Victoria Fernandez, Daniel Livingstone, Kerri McCusker, and Maria Toro-Troconis. 2014. Using virtual worlds for role play simulation in child and adolescent psychiatry: an evaluation study. The Psychiatric Bulletin 38, 5 (2014), 204--210.

[45]

Lev S Vygotsky. 1978. Mind in society Harvard university press. Cambridge, MA (1978).

[46]

Harald Werneck, Maximilian Oscar Eder, Takuya Yanagida, and Brigitte Rollett. 2014. Predicting adolescents' parent-- child relationship quality from parental personality, marital confict and adolescents' personality. European Journal of Developmental Psychology 11, 2 (2014), 159--176.

[47]

Bridget Young, Mary Dixon-Woods, Michelle Findlay, and David Heney. 2002. Parenting in a crisis: conceptualising mothers of children with cancer. Social Science Medicine 55, 10 (2002), 1835--1847. https://doi.org/10.1016/s0277-9536(01)00318-5

[48]

Bridget Young, Mary Dixon-Woods, Kate C Windridge, and David Heney. 2003. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. Bmj 326, 7384 (2003), 305.

Cited By

Feifer DMerz AAvery MTsuchiyose EEche-Ugwu IAwofeso OWolfe JDussel VRequena M(2025)Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative StudyJournal of Pain and Symptom Management10.1016/j.jpainsymman.2024.10.00169:2(e131-e138)Online publication date: Feb-2025
https://doi.org/10.1016/j.jpainsymman.2024.10.001
Duarte AMaria Cerqueira da Silva CBarbieri-Figueiredo M(2024)Construction and Validation of a Simulation Scenario for Teaching Family-Focused Care in Pediatric OncologyJournal of Family Nursing10.1177/10748407231223768Online publication date: 19-Jan-2024
https://doi.org/10.1177/10748407231223768
Zehrung RReddy MChen Y(2024)Transitioning Together: Collaborative Work in Adolescent Chronic Illness ManagementProceedings of the ACM on Human-Computer Interaction10.1145/36869568:CSCW2(1-24)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686956
Show More Cited By

Index Terms

Challenges in the Parent-Child Communication of Health-related Information in Pediatric Cancer Care
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI

Recommendations

Learning from Healthcare Providers’ Strategies: Designing Technology to Support Effective Child Patient-Provider Communication
CHI '21: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems

Effective patient-provider communication is critical to promote patient satisfaction, encourage patient involvement in care, and improve health outcomes. Although prior HCI works aim to enhance the dyadic communication by improving patients’ ...
Loneliness, parent-child communication and cyberbullying victimization among Spanish youths

Cyberbullying has been recognized as an important risk factor for mental health. Few studies have analyzed relationships between family variables and cyberbullying victimization. This ex post facto study analyze the relationships between loneliness, ...
Supporting parent-child communication in divorced families

Divorce affects a significant number of children and parents worldwide. We interviewed 10 parents and five children to get a qualitative understanding of the challenges faced by these families and the role of technology in maintaining contact. We found ...

Comments

Information & Contributors

Information

Published In

cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 5, Issue CSCW1

CSCW

April 2021

5016 pages

EISSN:2573-0142

DOI:10.1145/3460939

Editor:
Jeff Nichols
Apple Inc., United States

Issue’s Table of Contents

Copyright © 2021 ACM.

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: 22 April 2021

Published in PACMHCI Volume 5, Issue CSCW1

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Research-article

Funding Sources

National Science Foundation

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

16
Total Citations
View Citations
1,086
Total Downloads

Downloads (Last 12 months)409
Downloads (Last 6 weeks)54

Reflects downloads up to 05 Mar 2025

Other Metrics

View Author Metrics

Citations

Cited By

Feifer DMerz AAvery MTsuchiyose EEche-Ugwu IAwofeso OWolfe JDussel VRequena M(2025)Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative StudyJournal of Pain and Symptom Management10.1016/j.jpainsymman.2024.10.00169:2(e131-e138)Online publication date: Feb-2025
https://doi.org/10.1016/j.jpainsymman.2024.10.001
Duarte AMaria Cerqueira da Silva CBarbieri-Figueiredo M(2024)Construction and Validation of a Simulation Scenario for Teaching Family-Focused Care in Pediatric OncologyJournal of Family Nursing10.1177/10748407231223768Online publication date: 19-Jan-2024
https://doi.org/10.1177/10748407231223768
Zehrung RReddy MChen Y(2024)Transitioning Together: Collaborative Work in Adolescent Chronic Illness ManagementProceedings of the ACM on Human-Computer Interaction10.1145/36869568:CSCW2(1-24)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686956
Schnur JGarcia-Martínez ASoga PBadillo-Urquiola KBotello ACalderon Raisbeck AChawla SErnst JGentry WJohnson RKennel MRobles JWagner MMedina EGarduño Espinosa JMárquez-González HOlivar-López VJuárez-Villegas LAvilés-Robles MDorantes-Acosta EAvila VChapa-Koloffon GCruz ELuis LQuezada COrozco EServán-Mori ECordero MMartín Payo RChawla NFarzan RLópez CCardoso Llach DQuercia DMustafa MNiu SWong-Villacrés M(2024)SaludConectaMX: Lessons Learned from Deploying a Cooperative Mobile Health System for Pediatric Cancer Care in MexicoCompanion Publication of the 2024 Conference on Computer-Supported Cooperative Work and Social Computing10.1145/3678884.3685922(316-322)Online publication date: 11-Nov-2024
https://dl.acm.org/doi/10.1145/3678884.3685922
Smriti DWang LHuh-Yoo J(2024)Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With DementiaProceedings of the ACM on Human-Computer Interaction10.1145/36373258:CSCW1(1-34)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637325
Cha YGunal YWou ALee JNewman MPark S(2024)Shared Responsibility in Collaborative Tracking for Children with Type 1 Diabetes and their ParentsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642344(1-20)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642344
Seo WYang CKim Y(2024)ChaCha: Leveraging Large Language Models to Prompt Children to Share Their Emotions about Personal EventsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642152(1-20)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642152
Arvidsson SBrobeck ENygren JJarfelt MAili KOlsson M(2024)Adult survivors’ perceptions of their childhood and the influences of being treated for acute lymphoblastic leukaemia with allogeneic hematopoietic stem cell transplantation as a child: A phenomenographic studyEuropean Journal of Oncology Nursing10.1016/j.ejon.2024.10259270(102592)Online publication date: Jun-2024
https://doi.org/10.1016/j.ejon.2024.102592
Ankrah EMarathe MBhattacharya ARitt-Olson AMilam JTorno LHayes G(2023)Plan For Tomorrow: The Experience of Adolescent and Young Adult Childhood Cancer Survivors as they Transition to Adult CareProceedings of the ACM on Human-Computer Interaction10.1145/36102017:CSCW2(1-27)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610201
Jonas RHanrahan BSloan CFosco G(2023)Supporting from the Background: How a Mobile Application for Parent Skills Development Encourages Authoritative ParentingCompanion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing10.1145/3584931.3606969(105-111)Online publication date: 14-Oct-2023
https://dl.acm.org/doi/10.1145/3584931.3606969
Show More Cited By

View Options

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

Login options

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

Full Access

Get this Article

Figures

Tables

Media

View Issue’s Table of Contents