research-article

Open access

Understanding the Therapeutic Coaching Needs of Mothers of Children with Cerebral Palsy

Authors:

Ebtisam Alabdulqader,

Katy Stockwell,

Lindsay Pennington,

Roisin McNaney,

Stephen Lindsay,

Patrick OlivierAuthors Info & Claims

DIS '22: Proceedings of the 2022 ACM Designing Interactive Systems Conference

Pages 1788 - 1801

https://doi.org/10.1145/3532106.3533576

Published: 13 June 2022 Publication History

All formats PDF

Abstract

Mothers of preschool children with cerebral palsy are often responsible for delivering multiple home therapy programs. Technology could be a way to bridge some of the challenges of home therapy delivery, such as lack of regular contact with professionals and the need for support continuity. We interviewed seven mothers and four speech therapists to explore their challenges, and the types of support they currently receive (or give). Key issues included limitations of existing communication channels between mothers and professionals, the mothers’ social support needs, and the level of commitment required to self-deliver home therapy. Based on findings indicating video sharing as an existing practice among mothers, we conducted three workshops to further investigate how a video-based platform could support home therapy delivery. We conclude with a number of design considerations for such technologies, to improve communication and collaboration between professional therapists, mothers and members of their wider social network.

References

[1]

Kimberly Allen and Nichole Huff. 2014. Family Coaching: An Emerging Family Science Field. Family Relations 63, 5: 569–582. http://doi.org/10.1111/fare.12087

[2]

Stina Balldin, Philip Fisher, and Ingegerd Wirtberg. 2016. Video Feedback Intervention With Children: A Systematic Review. Research on Social Work Practice. http://doi.org/10.1177/1049731516671809

[3]

Janet Baxendale and Anne Hesketh. 2009. Comparison of the effectiveness of the Hanen Parent Programme and traditional clinic therapy. International Journal of Language & Communication Disorders 38, 4: 397–415. http://doi.org/10.1080/1368282031000121651

[4]

J. C. Brehaut, D. E. Kohen, P. Raina, 2004. The Health of Primary Caregivers of Children With Cerebral Palsy: How Does It Compare With That of Other Canadian Caregivers? Pediatrics 114, 2: e182–e191. http://doi.org/10.1542/peds.114.2.e182

[5]

Van Erick Custodio. 2016. VidCoach: A Mobile Video Modeling System for Individuals with Autism. Electronic Theses and Dissertations UC Irvine.

[6]

Ann Christin Eliasson, Karin Shaw, Elisabeth Berg, and Lena Krumlinde-Sundholma. 2011. An ecological approach of Constraint Induced Movement Therapy for 2-3-year-old children: A randomized control trial. Research in Developmental Disabilities 32, 6: 2820–8.

[7]

Jennifer Fereday and Eimear Muir-Cochrane. 2006. Demonstrating Rigor Using Thematic Analysis: A Hybrid Approach of Inductive and Deductive Coding and Theme Development. International Journal of Qualitative Methods 5, 1: 80–92.

[8]

B. Fernandes. 2011. iTherapy: The Revolution of Mobile Devices Within the Field of Speech Therapy. Perspectives on School-Based Issues - American Speech-Language- Hearing Association (ASHA) 12, 2: 35–40. http://doi.org/10.1044/sbi12.2.35

[9]

Andrew M Gordon, YaChing Hung, Marina Brandao, 2011. Bimanual Training and Constraint-Induced Movement Therapy in Children With Hemiplegic Cerebral Palsy: A Randomized Tria. Neurorehabilitation and Neural Repair 25, 8: 692–702.

[10]

Jonathan Green, Tony Charman, Helen McConachie, 2010. Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. The Lancet 375, 9732: 2152–2160. http://doi.org/10.1016/S0140-6736(10)60587-9

[11]

Gillian R. Hayes, Lamar M. Gardere, Gregory D. Abowd, and Khai N. Truong. 2008. CareLog: a selective archiving tool for behavior management in schools. In Proceeding of the twenty-sixth annual CHI conference on Human factors in computing systems - CHI ’08, 685–694. http://doi.org/10.1145/1357054.1357164

Digital Library

[12]

Gillian R Hayes, Karen G Cheng, Sen H Hirano, Karen P Tang, Marni S Nagel, and Dianne E Baker. 2014. Estrellita: A Mobile Capture and Access Tool for the Support of Preterm Infants and Their Caregivers. ACM Transactions on Computer-Human Interaction 21, 3: 1–28. http://doi.org/10.1145/2617574

Digital Library

[13]

Gillian R Hayes, Donald J Patterson, Mohan Singh, Dana Gravem, Julia Rich, and Dan Cooper. 2011. Supporting the transition from hospital to home for premature infants using integrated mobile computing and sensor support. Personal and Ubiquitous Computing 15: 871–885. http://doi.org/10.1007/s00779-011-0402-4

Digital Library

[14]

HealthGrades Inc. Statistics by Country for Cerebral Palsy. Retrieved September 19, 2016 from http://www.rightdiagnosis.com/c/cerebral_palsy/stats-country.htm

[15]

M. Hines, M. Lincoln, R. Ramsden, J. Martinovich, and C. Fairweather. 2015. Speech pathologists’ perspectives on transitioning to telepractice: What factors promote acceptance? Journal of Telemedicine and Telecare 0, 0: 1–5. http://doi.org/10.1177/1357633X15604555

[16]

Jim Hinojosa. 1990. How Mothers of Preschool Children With Cerebral Palsy Perceive Occupational and Physical Therapists and Their Influence on Family Life. The Occupational Therapy Journal of Research: Occupation, Participation and Health 10, 3: 144–162.

[17]

Jim Hinojosa and Jill Anderson. 1991. Mothers’ perceptions of home treatment programs for their preschool children with cerebral palsy. The American Journal of Occupational Therapy 45, 3: 273–279.

[18]

Steve Hodges, Emma Berry, and Ken Wood. 2011. SenseCam: A wearable camera that stimulates and rehabilitates autobiographical memory. Memory 19, 7: 685–696. http://doi.org/10.1080/09658211.2011.605591

[19]

Katherine Hustad, Brynn Schueler, Laurel Schultz, and Caitlin DuHadway. 2012. Intelligibility of 4-Year-Old Children With and Without Cerebral Palsy. Journal of Speech, Language, and Hearing Research 55: 1177–1189. http://doi.org/10.1044/1092-4388(2011/11-0083)a

[20]

Inseok Hwang, Chungkuk Yoo, Chanyou Hwang, 2014. TalkBetter: Family-driven Mobile Intervention Care for Children with Language Delay. In Proceedings of the 17th ACM conference on Computer supported cooperative work & social computing - CSCW ’14, 1283–1296. http://doi.org/10.1145/2531602.2531668

Digital Library

[21]

Casey Stewart Keck and Charles R Doarn. 2014. Telehealth technology applications in speech-language pathology. Telemedicine journal and e-health: the official journal of the American Telemedicine Association 20, 7: 653–9. http://doi.org/10.1089/tmj.2013.0295

[22]

Hilary Kennedy, Miriam Landor, and Liz Todd. 2011. Video Interaction Guidance: A relationship-based intervention to promote attunement, empathy and wellbeing. Jessica Kingsley Publishers.

[23]

Kenneth A. Stern. Prevalence of Cerebral Palsy. Retrieved September 20, 2016 from http://www.cerebralpalsy.org/about-cerebral-palsy/prevalence-and-incidence

[24]

Julie A Kientz and Gregory D Abowd. 2009. KidCam: Toward an effective technology for the capture of children,s moments of interest. Pervasive 2009, LNCS 5538 5538 LNCS: 115–132. http://doi.org/10.1007/978-3-642-01516-8_9

Digital Library

[25]

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 Conference on Human Factors in Computing Systems - Proceedings, 1713–1722. http://doi.org/10.1145/1518701.1518965

Digital Library

[26]

Julie A Kientz, Rosa I Arriaga, Marshini Chetty, 2007. Grow and Know: Understanding Record-Keeping Needs for Tracking the Development of Young Children. In Proceedings of the ACM 2007 Conference on Human Factors in Computing Systems, 1351–1360. http://doi.org/10.1145/1240624.1240830

Digital Library

[27]

Julie A Kientz, Gillian R Hayes, Tracy L Westeyn, Thad Starner, and Gregory D Abowd. 2007. Pervasive Computing and Autism: Assisting Caregivers of Children with Special Needs. IEEE Pervasive Computing 6. http://doi.org/10.1109/MPRV.2007.18

Digital Library

[28]

Leslie S Liu, Sen H Hirano, Monica Tentori, 2011. Improving communication and social support for caregivers of high-risk infants through mobile technologies. In Proceedings of the ACM 2011 conference on Computer supported cooperative work - CSCW ’11, 475. http://doi.org/10.1145/1958824.1958897

Digital Library

[29]

Deborah Lupton. 2013. “The digitally engaged patient: Self-monitoring and self-care in the digital health era.” Social Theory & Health. 11, no.3: 256-270. https://doi.org/10.1057/sth.2013.10

[30]

Edwin Maas, Donald Robin, Shannon Hula, 2008. Principles of Motor Learning in Treatment of Motor Speech Disorders. Am J Speech Lang Pathol 17, 3: 277–98.

[31]

Annette Majnemer. 1998. Benefits of early intervention for children with developmental disabilities. Seminars in Pediatric Neurology 5, 1: 62–69. http://doi.org/10.1016/S1071-9091(98)80020-X

[32]

L Mamykina, E D Mynatt, P R Davidson, D Greenblatt, and Acm. 2008. MAHI: Investigation of Social Scaffolding for Reflective Thinking in Diabetes Management. Chi 2008: 26th Annual Chi Conference on Human Factors in Computing Systems Vols 1 and 2, Conference Proceedings: 477–486. http://doi.org/10.1145/1357054.1357131

Digital Library

[33]

Gabriela Marcu, Anind K. Dey, and Sara Kiesler. 2012. Parent-driven use of wearable cameras for autism support. In Proceedings of the 2012 ACM Conference on Ubiquitous Computing - UbiComp ’12, 401. http://doi.org/10.1145/2370216.2370277

Digital Library

[34]

Gabriela Marcu and Gillian R Hayes. 2010. Use of a Wearable Recording Device in Therapeutic Interventions for Children with Autism. In Workshop on Interactive Systems in Healthcare, 113–116. Retrieved from http://www.gillianhayes.com/wp-content/uploads/2011/01/23_WISHSenseCam_2010.pdf

[35]

Rose Mary Watson and Lindsay Pennington. 2015. Assessment and management of the communication difficulties of children with cerebral palsy: a UK survey of SLT practice. International Journal of Language & Communication Disorders 50, 2: 241–259. http://doi.org/10.1111/1460-6984.12138

[36]

Philipp Mayring. 2004. Qualitative Content Analysis in Flickr. In A Companion to Qualitative Research. Sage, London.

[37]

Lucy McGoron and Steven J. Ondersma. 2015. Reviewing the need for technological and other expansions of evidence-based parent training for young children. Children and Youth Services Review 59: 71–83. http://doi.org/10.1016/j.childyouth.2015.10.012

[38]

Maura McLaughlin. 2011. Speech and Language Delay in Children. American Family Physician 83, 10.

[39]

Marco Masoni and Maria Renza Guelfi. 2020. “WhatsApp and other messaging apps in medicine: opportunities and risks.” Internal and emergency medicine 15, no. 2:171-173.https: //doi.org/10.1007/s11739-020-02292-5

[40]

David H. Nguyen, Alfred Kobsa, Gillian R. Hayes, 2009. Encountering SenseCam: Personal Recording Technologies in Everyday Life. In UbiComp, 182. http://doi.org/10.1145/1620545.1620571

Digital Library

[41]

Francisco Nunes and Geraldine Fitzpatrick.2015.”Self-care technologies and collaboration.” International Journal of Human-Computer Interaction 31, no. 12:869-881.https://doi.org/10.1080/10447318.2015.1067498

[42]

Jeanette Olsen. 2014. Health Coaching: A Concept Analysis. Nursing Forum 49, 1: 18–29. http://doi.org/10.1111/nuf.12042

[43]

Rosalind Owen, Lucy Hayett, and Sue Roulstone. 2004. Children's views of speech and language therapy in school: Consulting children with communication difficulties. Child Language Teaching and Therapy 20, 1: 55–73. http://doi.org/10.1191/0265659004ct263oa

[44]

Lindsay Pennington, Juliet Goldbart, and Julie Marshall. 2004. Interaction training for conversational partners of children with cerebral palsy: a systematic review. International journal of language & communication disorders / Royal College of Speech & Language Therapists 39, 2: 151–170. http://doi.org/10.1080/13682820310001625598

[45]

Lindsay Pennington, Kirsty Thomson, Peter James, Laura Martin, and Richard McNally. 2009. Effects of It Takes Two to Talk- The Hanen Program for Parents of Preschool Children With Cerebral Palsy: Findings From an Exploratory Study. J Speech Lang Hear Res 52, 5: 1121–38.

[46]

Jan Pepper and Elaine Weitzman. 2004. It Takes Two to Talk: A Practical Guide For Parents of Children With Language Delays. Hanen Centre Publication.

[47]

Andrew Pickles, Ann Le Couteur, Kathy Leadbitter, 2016. Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. The Lancet 388, 10059: 2501–2509. http://doi.org/10.1016/S0140-6736(16)31229-6

[48]

Olga Pykhtina, Madeline Balaam, Gavin Wood, Sue Pattison, Ahmed Kharrufa, and Patrick Olivier. 2012. Magic Land: The Design and Evaluation of an Interactive Tabletop Supporting Therapeutic Play with Children. In DIS 2012, 517–524.

[49]

Olga Pykhtina, Madeline Balaam, Gavin Wood, Sue Pattison, Ahmed Kharrufa, and Patrick Olivier. 2012. Magic Land: Play Therapy on Interactive Tabletops. In Proceedings of CHI’12, 136. http://doi.org/10.1145/2212776.2223814

Digital Library

[50]

Peter Rosenbaum, Nigel Paneth, Alan Leviton, 2007. A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology 49, SUPPL.109: 8–14. http://doi.org/10.1111/j.1469-8749.2007.tb12610.x

[51]

Dathan Rush, M'Lisa Shelden, and Barbara Hanft. 2003. Coaching families and colleagues: A process for collaboration in natural settings. Infants & Young Children 16, 1: 33–47.

[52]

Richard A. Schmidt and Timothy Donald Lee. 2005. Motor Control and Learning: A Behavioral Emphasis. Leeds: Human Kinetics Europe Ltd.

[53]

Marén Schorch, Lin Wan, David William Randall, and Volker Wulf. 2016. Designing for Those who are Overlooked - Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing - CSCW ’16: 785–797. http://doi.org/10.1145/2818048.2819999

Digital Library

[54]

Susanna Shong and SheungTak Cheng. 2007. Language Assessment: A Review Of Cross-Cultural Issues, And The Development Of An Indigenous Tool For Hong Kong Infants And Toddlers. In Educational Psychology Research Focus. 191.

[55]

Karen P Tang, Sen H Hirano, Karen G Cheng, and Gillian R Hayes. 2012. Balancing Caregiver and Clinician Needs in a Mobile Health Informatics Tool for Preterm Infants. In Proceedings of the 2012 Pervasive Health Conference. http://doi.org/10.4108/icst.pervasivehealth.2012.248716

[56]

Rachel Ulgado, Katherine Nguyen, Van Erick Custodio, Aaron Waterhouse, Rachel Weiner, and Gillian Hayes. 2013. VidCoach: A Mobile Video Modeling System for Youth with Special Needs. In Proceedings of the 12th International Conference on Interaction Design and Children - IDC ’13, 581–584. http://doi.org/10.1145/2485760.2485870

Digital Library

[57]

Lucy Yardley. 2000. Dilemmas in qualitative health research. Psychology and Health 15, 2: 215–228. http://doi.org/10.1080/08870440008400302

[58]

Cerebral Palsy Organization in UK. Retrieved September 19, 2016 from http://www.cerebralpalsy.org.uk/

[59]

Is Your Toddler Communicating With You? American Academy of Pediatrics. Retrieved from https://www.healthychildren.org/English/ages-stages/toddler/Pages/Language-Delay.aspx

[60]

Jon Kolko. 2010. Abductive thinking and sensemaking: the drivers of design synthesis. Design Issues, 26(1), 15–28. https://doi.org/10.1162/desi.2010.26.1.15

[61]

Andreja Istenic Starcic, Spela Bagon. 2014 ICT‐supported learning for inclusion of people with special needs: Review of seven educational technology journals, 1970–2011. British Journal of Educational Technology. 45(2):202-30. https://doi.org/10.1111/bjet.12086

[62]

Dorit Maor, Jan Currie, and Rachel Drewry. 2011. The effectiveness of assistive technologies for children with special needs: a review of research-based studies. Eur. J. Spec. Needs Educ. 26, 3 (2011), 283–298. https://doi.org/10.1080/08856257.2011.593821

[63]

Raziye Erdem. 2017. Students with Special Educational Needs and Assistive Technologies: A Literature Review. TOJET Turkish Online J. Educ. Technol. 16, 1 (2017). Retrieved April 21, 2022 from http://link.springer.com

[64]

Bill Gaver, Tony Dunne, and Elena Pacenti. 1999. Design: Cultural probes. Interactions 6, 1 (January 1999), 21–29. //doi.org/10.1145/291224.291235

Digital Library

Cited By

Kalanadhabhatta MMateo Santana AMayorga LRahman TGanesan DGrabell A(2024)Multi-stakeholder Perspectives on Mental Health Screening Tools for ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642604(1-15)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642604
Siddiqui FVarghese DSingh PBayyavarapu SLindsay SChandrasekara DKulkarni PWu LAlshehri TOlivier P(2023)Exploring the digital support needs of caregivers of people with serious mental illnessProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580674(1-16)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580674

Recommendations

Assisting Caregivers of Children with Cerebral Palsy: Towards a Self-Feeding Assessment Spoon
TEI '15: Proceedings of the Ninth International Conference on Tangible, Embedded, and Embodied Interaction

Many children with cerebral palsy (CP) encounter great difficulties mastering self-feeding. We set out to assess the self-feeding skills of young children with CP via a novel instrumented spoon that monitors upper extremity biomechanics involved in ...
A parental perspective on apps for young children

Touchscreen applications (apps) for young children have seen increasingly high rates of growth with more than a hundred thousand now available apps. As with other media, parents play a key role in young children's app selection and use. However, to date,...
A Tangible Tabletop Game Supporting Therapy of Children with Cerebral Palsy
Proceedings of the 2nd International Conference on Fun and Games

This paper presents the design of a table-top game supporting the treatment of children with Cerebral Palsy. The game was developed through a participatory design process involving therapists and children from the target user group. The game is ...

Comments

Please enable JavaScript to view thecomments powered by Disqus.

Information & Contributors

Information

Published In

cover image ACM Conferences

DIS '22: Proceedings of the 2022 ACM Designing Interactive Systems Conference

June 2022

1947 pages

ISBN:9781450393584

DOI:10.1145/3532106

Editors:
Florian `Floyd' Mueller
Monash University, Melbourne, Australia
,
Stefan Greuter
Deakin University, Melbourne, Australia
,
Rohit Ashok Khot
RMIT University, Melbourne, Australia
,
Penny Sweetser
The Australian National University, Canberra, Australia
,
Marianna Obrist
University College London, UK

Copyright © 2022 Owner/Author.

This work is licensed under a Creative Commons Attribution International 4.0 License.

Sponsors

SIGCHI: ACM Special Interest Group on Computer-Human Interaction

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 13 June 2022

Check for updates

Author Tags

Qualifiers

Research-article
Research
Refereed limited

Funding Sources

Sparks, The Children?s Medical Research Charity

Conference

DIS '22

Sponsor:

SIGCHI

DIS '22: Designing Interactive Systems Conference

June 13 - 17, 2022

Virtual Event, Australia

Acceptance Rates

Overall Acceptance Rate 1,158 of 4,684 submissions, 25%

Upcoming Conference

DIS '25

Sponsor:
sigchi

Designing Interactive Systems Conference

July 5 - 9, 2025

Funchal , Portugal

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

2
Total Citations
View Citations
646
Total Downloads

Downloads (Last 12 months)245
Downloads (Last 6 weeks)34

Reflects downloads up to 15 Feb 2025

Other Metrics

View Author Metrics

Citations

Cited By

Kalanadhabhatta MMateo Santana AMayorga LRahman TGanesan DGrabell A(2024)Multi-stakeholder Perspectives on Mental Health Screening Tools for ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642604(1-15)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642604
Siddiqui FVarghese DSingh PBayyavarapu SLindsay SChandrasekara DKulkarni PWu LAlshehri TOlivier P(2023)Exploring the digital support needs of caregivers of people with serious mental illnessProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580674(1-16)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580674

View Options

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

HTML Format

View this article in HTML Format.

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 Publication

Figures

Tables

Media

View Table of Conten