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

Published:22 April 2021Publication History
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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/promisGoogle ScholarGoogle Scholar
  2. [n.d.]. Support for Families When a Child Has Cancer. https://www.cancer.gov/about-cancer/coping/caregiver- support/parentsGoogle ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  4. Paula L Antognoli-Toland. 2001. Parent-child relationship, family structure, and loneliness among adolescents. Adolescent & Family Health (2001).Google ScholarGoogle Scholar
  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/ 10.1145/3024969.3025066Google ScholarGoogle ScholarDigital LibraryDigital Library
  6. David K Berlo. 1977. Communication as process: Review and commentary. Annals of the International Communication Association 1, 1 (1977), 11--27.Google ScholarGoogle ScholarCross RefCross Ref
  7. Hugh Beyer and Karen Holtzblatt. 2000. Contextual design defning customer-centered systems. Morgan Kaufmann.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarCross RefCross Ref
  36. Alan Russell, Jacqueline Mize, and Kerry Bissaker. 2002. Parent-child relationships. Blackwell handbook of childhood social development (2002), 205--222.Google ScholarGoogle Scholar
  37. Christoph Rutishauser. 2003. Communicating with young people. Paediatric respiratory reviews 4, 4 (2003), 319--324.Google ScholarGoogle Scholar
  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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarDigital LibraryDigital Library
  40. Anselm Strauss and Juliet M Corbin. 1997. Grounded theory in practice. Sage.Google ScholarGoogle Scholar
  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/10.1145/2556288.2557386Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarDigital LibraryDigital 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.Google ScholarGoogle ScholarCross RefCross Ref
  45. Lev S Vygotsky. 1978. Mind in society Harvard university press. Cambridge, MA (1978).Google ScholarGoogle Scholar
  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.Google ScholarGoogle ScholarCross RefCross Ref
  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)00318-5Google ScholarGoogle ScholarCross RefCross Ref
  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.Google ScholarGoogle Scholar

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      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
      Issue’s Table of Contents

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      Publication History

      • Published: 22 April 2021
      Published in pacmhci Volume 5, Issue CSCW1

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