iCanCope with Pain™: User‐Centred Design of a Web‐ and Mobile‐Based Self‐Management Program for Youth with Chronic Pain Based on Identified Health Care Needs

Stinson, Jennifer N; Lalloo, Chitra; Harris, Lauren; Isaac, Lisa; Campbell, Fiona; Brown, Stephen; Ruskin, Danielle; Gordon, Allan; Galonski, Marilyn; Pink, Leah R; Buckley, Norman; Henry, James L; White, Meghan; Karim, Allia

doi:10.1155/2014/935278

Cited by 149Pediatric Pain Management TechniquesMobile Health and mHealth ApplicationsAdolescent and Pediatric Healthcare

iCanCope with Pain™: User‐Centred Design of a Web‐ and Mobile‐Based Self‐Management Program for Youth with Chronic Pain Based on Identified Health Care Needs

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Stinson, Jennifer N, Lalloo, Chitra, Harris, Lauren, Isaac, Lisa, Campbell, Fiona, Brown, Stephen, Ruskin, Danielle, Gordon, Allan +6 more·2014·Pain Research and Management

DOI 10.1155/2014/935278PMC PMC4197753

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Abstract

BACKGROUND: While there are emerging web‐based self‐management programs for children and adolescents with chronic pain, there is currently not an integrated web‐ and smartphone‐based app that specifically addresses the needs of adolescents with chronic pain. OBJECTIVES: To conduct a needs assessment to inform the development of an online chronic pain self‐management program for adolescents, called iCanCope with Pain™. METHODS: A purposive sample of adolescents (n=23; 14 to 18 years of age) was recruited from two pediatric chronic pain clinics in Ontario. Interdisciplinary health care providers were also recruited from these sites. Three focus groups were conducted with adolescents (n=16) and one with pediatric health care providers (n=7). Individual adolescent interviews were also conducted (n=7). RESULTS: Qualitative analysis uncovered four major themes: pain impact; barriers to care; pain management strategies; and transition to adult care. Pain impacted social, emotional, physical and role functioning, as well as future goals. Barriers to care were revealed at the health care system, patient and societal levels. Pain management strategies included support systems, and pharmacological, physical and psychological approaches. Transition subthemes were: disconnect between pediatric and adult systems; skills development; parental role; and fear/anxiety. Based on these identified needs, the iCanCope with Pain™ architecture will include the core theory‐based functionalities of: symptom self‐monitoring; personalized goal setting; pain coping skills training; peer‐based social support; and chronic pain education. CONCLUSIONS: The proposed iCanCope with Pain™ program aims to address the self‐management needs of adolescents with chronic pain by improving access to disease information, strategies to manage symptoms and social support.

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Other mobile-based technologies have been developed to assist patients in remotely self-monitoring symptoms and deliver interventions involving goal-setting, coping skills training, and social support.
“Other mobile-based technologies have been developed to assist patients in remotely self-monitoring symptoms and deliver interventions involving goal-setting for improving functioning, coping skills training and practice, and social support via discussion boards, goal sharing, and group-based challenges [55].”
From Best-evidence for the rehabilitation of chronic pain part 1: Pediatric pain (2019) · cites this paper as [55]
The Results (Overview of program architecture; Theoretical rationale, page unavailable) describe a proposed smartphone app with symptom tracking, goal setting, coping-skills practice, goal sharing, discussion boards, and group challenges. But the Conclusions (page unavailable) say developing a prototype was the next step, so the paper does not establish that this intervention had already been developed and was delivering those features. (LLM, conf=0.88)
Experimental — accuracy not yet measured
Our focus on reviewing studies of mHealth apps for self-managing chronic conditions may explain the deviation from Sieverink et al, as these interventions encourage users to systematically record data and capture variability of their disease state over time.
“Our focus on reviewing studies of mHealth apps for self-managing chronic conditions may explain this finding, as these interventions encourage users to systematically record data and capture the variability of their disease state over time [84].”
From A Library of Analytic Indicators to Evaluate Effective Engagement with Consumer mHealth Apps for Chronic Conditions: Scoping Review (2019) · cites this paper as [84]

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Digital Technology and Mobile Health in Behavioral Migraine Therapy: a Narrative Review
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The iCanCope pain self-management application for adolescents with juvenile idiopathic arthritis: a pilot randomized controlled trial
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Capturing Daily Disease Experiences of Adolescents With Chronic Pain: mHealth-Mediated Symptom Tracking
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Evaluation of Digital Technologies Tailored to Support Young People’s Self-Management of Musculoskeletal Pain: Mixed Methods Study
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A cognitive–behavioral digital health intervention for sickle cell disease pain in adolescents: a randomized, controlled, multicenter trial
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Systematic evaluation of commercially available pain management apps examining behavior change techniques
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Design for mobile mental health: an exploratory review
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iCanCope with pain: cultural adaptation and usability testing of a self-management app for adolescents with persistent pain in Norway
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Comparison of a Mobile Health Electronic Visual Analog Scale App With a Traditional Paper Visual Analog Scale for Pain Evaluation: Cross-Sectional Observational Study
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State of The Art in Biobehavioral Approaches to the Management of Chronic Pain in Childhood
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An Analytics Platform to Evaluate Effective Engagement With Pediatric Mobile Health Apps: Design, Development, and Formative Evaluation
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Technology use and preferences to support clinical practice guideline awareness and adherence in individuals with sickle cell disease
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Peer Support in the Treatment of Chronic Pain in Adolescents: A Review of the Literature and Available Resources
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Patient-Centered Methods for Designing and Developing Health Information Communication Technologies: A Systematic Review
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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
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Perspectives of Healthcare Providers to Inform the Design of an AI-Enhanced Social Robot in the Pediatric Emergency Department
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Departure from Pediatric Care: Transitioning of Adolescents with Chronic Pain to Adult Care.
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myPainPal: co-creation of a mHealth app for the management of chronic pain in young people
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Design and usability evaluation of a mobile application for self-care among Iranian adolescents
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Does Pain Intensity Matter? The Relation between Coping and Quality of Life in Pediatric Patients with Chronic Pain
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Pain self‐management plus nurse‐led support in young adults with irritable bowel syndrome: Study protocol for a pilot randomized control trial
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The Pain Coping Questionnaire short-form: preliminary reliability and validity
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End user and implementer experiences of mHealth technologies for noncommunicable chronic disease management in young adults: a qualitative systematic review protocol.
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Rapid Transition to Virtual Assessment and Treatment in an Interdisciplinary Randomized Clinical Trial for Youth With Chronic Pain: Adaptations and Implications for Future Trials
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Online multidisciplinary interventions for paediatric chronic pain: A content analysis
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Perceptions of Adolescents With Chronic Pain About Peer Support: Reflexive Thematic Analysis
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Exploring User Visions for Modeling mHealth Apps Toward Supporting Patient-Parent-Clinician Collaboration and Shared Decision-making When Treating Adolescent Knee Pain in General Practice: Workshop Study
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A feasibility study examining the impact of yoga on psychosocial health and symptoms in pediatric outpatients receiving chemotherapy
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Virtual care for prostate cancer survivorship: protocol for an evaluation of a nurse-led algorithm-enhanced virtual clinic implemented at five cancer centres across Canada
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Agile development of a digital exposure treatment for youth with chronic musculoskeletal pain: protocol of a user-centred design approach and examination of feasibility and preliminary efficacy
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A technology ecosystem for chronic pain: promises, challenges, and future research
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Informações on-line como suporte às famílias de crianças e adolescentes com doença crônica
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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
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Maternal and Child Acceptability of a Proposed Guided Imagery Therapy Mobile App Designed to Treat Functional Abdominal Pain Disorders in Children: Mixed-Methods Predevelopment Formative Research
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Using User-Feedback to Develop a Website: MyT1DHope, for Parents of Children with T1D
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Acceleration of mobile health for monitoring post‐transplant in the COVID‐19 era: Applications for pediatric settings
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The Doctor Will “Friend” You Now: A Qualitative Study on Adolescents’ Preferences for Weight Management App Features
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The Service of Research Analytics to Optimize Digital Health Evidence Generation: Multilevel Case Study
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SUPPORTED SELF-CARE ACTIONS FOR CHILDREN AND TEENAGERS WITH CHRONIC DISEASES
Fernandes, L. T. B., da Nóbrega, V. M., Sales, M. L. X. F., Reichert, A. P. D. S., de Moura, F. M., & Collet, N. (2019) · Texto & Contexto - Enfermagem · doi:10.1590/1980-265x-tce-2018-0325 · Cited by 10 · see citing works
Participation in everyday life for young people with chronic pain in Saudi Arabia: “you feel lacking in life and you feel that time is flying by”
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An Image-Recognition Dietary Assessment App for Adolescents With Obesity: Pilot Randomized Controlled Trial
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A parent–science partnership to improve postsurgical pain management in young children: Co-development and usability testing of the Achy Penguin smartphone-based app
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Online paediatric chronic pain management: assessing the needs of UK adolescents and parents, using a cross-sectional survey
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mHealth Applications for Children and Young People With Persistent Pain: A Scoping Review
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The effect of a psychologically informed video series to treat adolescents' patellofemoral pain: A randomized controlled trial.
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Pelvic pain & endometriosis: the development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia
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Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application
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Growing up with chronic pain: a systematic review of the evidence in transitional care for young people with chronic pain
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Development of a novel mobile application, HBB Prompt, with human factors and user-centred design for Helping Babies Breathe skills retention in Uganda
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User-Driven Development of a Digital Behavioral Intervention for Chronic Pain: Multimethod Multiphase Study
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iCOPE With COVID-19: A Brief Telemental Health Intervention for Children and Adolescents During the COVID-19 Pandemic
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Infrastructure and Educational Needs of Newborn Screening Short-Term Follow-Up Programs within the Southeast Regional Newborn Screening & Genetics Collaborative: A Pilot Survey
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The Health Care Transition Needs of Adolescents and Emerging Adults with Chronic Pain: A Narrative Review
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The experience of chronic pain among adolescents: suffering and attempt to overcome pain?
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Systematic Review and Evaluation of Pain-Related Mobile Applications
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A Systematic Literature Review of the Pain Management Mobile Applications: Toward Building a Conceptual Model
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Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts
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“He told me my pain was in my head”: mitigating testimonial injustice through peer support
Vigouroux, M., Newman, G., Amja, K., & Hovey, R. B. (2023) · Frontiers in Pain Research · doi:10.3389/fpain.2023.1125963 · Cited by 5 · see citing works
“Context, content, and system” supporting digital health hub (DHH)–enabled models of care (MoCs) for fragility hip fractures: perspectives of diverse multidisciplinary stakeholders in South Australia from qualitative in-depth interviews
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Self-citation

(540) iCanCope with Pain: User-centered design of an integrated smartphone and web-based pain self-management program for youth and young adults with chronic pain
Stinson, J., Lalloo, C., Harris, L., Cafazzo, J. A., Campbell, F. A., Chorney, J. M. L., Clark, J., Dick, B., Forgeron, P. A., Gordon, A., et al. (2016) · Journal of Pain · doi:10.1016/j.jpain.2016.01.347 · Cited by 3 · see citing works
Self-citation
iCanCope™: User-centered design approach to develop integrated smartphone and web-based pain self-management programme for adolescents
Stinson, J., Lalloo, C., Harris, L., Cafazzo, J. A., Campbell, F. A., Dick, B. D., Feldman, B., Gordon, A., Montgomery, L. S., & Spiegel, L. R. (2017) · European Health Psychologist
Self-citation
Understanding the Information and Service Needs of Young Adults With Chronic Pain: Perspectives of Young Adults and Their Providers
Stinson, J., White, M., Isaac, L., Campbell, F., Brown, S., Ruskin, D., Gordon, A., Galonski, M., Pink, L., Buckley, N., et al. (2013) · The Clinical Journal of Pain · doi:10.1097/ajp.0b013e31826dce65 · Cited by 81 · see citing works
Self-citation
Pemanfaatan Icancope with Paintm Sebagai Program Self-management Berbasis Web Dan Mobile-smartphone Untuk Penatalaksaan Nyeri Kronis Pada Remaja
Triana, K. Y. (2016)
Impacts of the iCanCope Digital Pain Self-Management Program Among Adolescents and Young Adults With Chronic Pain: A Randomized Controlled Trial
Lalloo, C., Nishat, F., Palermo, T., Montgomery, L. S., Campbell, F. A., Baerg, K., Chorney, J. M. L., Dick, B. D., Renna, T. D., Mukhida, K., et al. (2026) · Canadian Journal of Pain · doi:10.1080/24740527.2026.2717605
Self-citation

Authors: Stinson, J. N., Lalloo, C., Harris, L., Isaac, L., Campbell, F., Brown, S., Ruskin, D., Gordon, A., Galonski, M., Pink, L. R., Buckley, N., Henry, J. L., White, M., & Karim, A.
Affiliations: University of Toronto (CA)
McMaster University (CA)
Mount Sinai Hospital (CA)
Corresponding author: Stinson, Jennifer N
ORCID: Stinson, Jennifer N
Lalloo, Chitra
Harris, Lauren
Isaac, Lisa
Campbell, Fiona
Ruskin, Danielle
Gordon, Allan
Buckley, Norman
White, Meghan
Karim, Allia
Venue: Pain Research and Management
Publisher: Wiley
Published: 2014-01
Volume: 19
Issue: 5
Pages: 257-265
ISSN: 1203-6765 (ISSN-L)
1918-1523
DOI: 10.1155/2014/935278
PMC: PMC4197753
OpenAlex: W88007950
Cited by: 149
References: 65
Citations by year: 2026: 4 · 2025: 11 · 2024: 6 · 2023: 17 · 2022: 16 · 2021: 22 · 2020: 16 · 2019: 14 · 2018: 15 · 2017: 10 · 2016: 10 · 2015: 6 · 2014: 2
FWCI: 8.77
Type: journal article
Language: en
Open access: gold
doi.org
Licence: cc-by
creativecommons.org/licenses/by/4.0/ (vor)
Locations: Pain Research and Management (publishedVersion, cc-by)
PubMed Central (publishedVersion, cc-by-nc)
PubMed (publishedVersion)
TSpace (University of Toronto) (submittedVersion, cc-by-nc)
DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
Funders: Canadian Pain Society
Topics: Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
Keywords: chronic pain, adolescents, self-management program, user-centered design, online intervention, mobile health apps, needs assessment, barriers to care, transition to adult care, pain coping skills training, peer support, symptom self-monitoring, goal setting
MeSH terms: Adolescent, Child, Female, Humans, Male, Self Care, Needs Assessment, Internet, Chronic Pain, Pain Management, Mobile Applications

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iCanCope with Pain™: User‐Centred Design of a Web‐ and Mobile‐Based Self‐Management Program for Youth with Chronic Pain Based on Identified Health Care Needs

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