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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
Open accessAbstract
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 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]
Experimental — accuracy not yet measuredIn the citing paper
“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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“There have been a small number of studies that have used and described using a patient-centered approach to design a web resource (Neubeck et al., 2016; Revenäs et al., 2015; Stinson et al., 2014; Taylor, Bray, Staggers, & Olson, 2003; Winterling et al., 2016).”
BackgroundCampagna, B. R., Tutino, R. C., Stevanović, K., Flood, J. R., Halevi, G., Shemesh, E., & Annunziato, R. A. (2021) · Pediatric Transplantation · doi:10.1111/petr.14152 · Cited by 9
Giovanni, C. B. S., Dawley, E. H., Pope, C. A., Steffen, M., & Roberts, J. R. (2021) · Southern Medical Journal · doi:10.14423/smj.0000000000001273 · Cited by 10
Phạm, Q., Shaw, J., Morita, P. P., Seto, E., Stinson, J., & Cafazzo, J. A. (2019) · Journal of Medical Internet Research · doi:10.2196/14849 · Cited by 12
Self-citationSUPPORTED 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
Alsaggaf, F., & Coyne, I. (2023) · Frontiers in Rehabilitation Sciences · doi:10.3389/fresc.2023.1099345 · Cited by 10
“A further self-pain-management strategy that has been used by young people lately are online resources (38), such as Youtube (39), WebMAP (40), and iCanCope (41, 42) chronic pain applications.”
BackgroundOei, K., Choi, E., Bar-Dayan, A., Stinson, J., Palmert, M. R., Alfonsi, J., & Hamilton, J. K. (2024) · JMIR Formative Research · doi:10.2196/58682 · Cited by 9
“Based on recommendations [25] and previous team experience [26], each usability cycle included 4-6 adolescents and 2 HCPs, with 2-3 cycles to identify and resolve issues [19,27,28].”
Self-citationBirnie, K. A., Nguyen, C., Amaral, T. D., Baker, L., Campbell, F. A., Lloyd, S., Ouellette, C., von Baeyer, C. L., Lalloo, C., Gerstle, J. T., et al. (2018) · Canadian Journal of Pain · doi:10.1080/24740527.2018.1534543 · Cited by 9
Self-citationHurley-Wallace, A. L., Schoth, D. E., Lilley, S., Williams, G., & Liossi, C. (2020) · British Journal of Pain · doi:10.1177/2049463720940341 · Cited by 9
mHealth Applications for Children and Young People With Persistent Pain: A Scoping Review
Schults, J. A., Cooke, M. L., Richards, J., Theodoros, J., Andresen, E., Paterson, R., & Alcock, M. (2018) · Clinical Nursing Research · doi:10.1177/1054773818795078 · Cited by 9
Selhorst, M., Hoehn, J., Schmitt, L., Benedict, J., & Fernandez-Fernandez, A. (2023) · Journal of Orthopaedic and Sports Physical Therapy · doi:10.2519/jospt.2023.12041 · Cited by 11
Parmar, G., Howard, A. F., Noga, H. L., Tannock, L., Abdulai, A., Allaire, C., Lett, S., Sutherland, J. L., de Arbina, E. L., Hummelshøj, L., et al. (2025) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-025-02907-x · Cited by 9
Buono, F. D., Lalloo, C., Larkin, K., Zempsky, W. T., Ball, S. A., Grau, L. E., Phạm, Q., & Stinson, J. (2021) · Contemporary Clinical Trials Communications · doi:10.1016/j.conctc.2021.100883 · Cited by 8
Self-citationHuckerby, L., McDonagh, J. E. R., & Lee, R. R. (2023) · Rheumatology Advances in Practice · doi:10.1093/rap/rkad006 · Cited by 7
Chan, N. H.-M., Merali, H. S., Mistry, N., Kealey, R., Campbell, D. M., Morris, S. K., & Santorino, D. (2021) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-021-01406-z · Cited by 8
Taygar, A. S., Bartels, S. L., de la Vega, R., Flink, I. K., Engman, L., Petersson, S., Johnsson, S. I., Boersma, K., McCracken, L. M., & Wicksell, R. K. (2025) · JMIR Formative Research · doi:10.2196/74064 · Cited by 7
“While an increasing number of studies have identified preferences and needs regarding digital interventions for chronic pain [25-27], end-user involvement is usually limited to a certain phase of the innovation process.”
Zepeda, M. S., Deighton, S., Markova, V., Madsen, J. W., & Racine, N. M. (2021) · Cognitive and Behavioral Practice · doi:10.1016/j.cbpra.2021.10.001 · Cited by 7
Grasaas, E., Helseth, S., Fegran, L., Stinson, J., Småstuen, M. C., Lalloo, C., & Haraldstad, K. (2022) · Pilot and Feasibility Studies · doi:10.1186/s40814-022-01113-0 · Cited by 8
“Researchers in collaboration with eHealth Innovation at University Health Network (Toronto, Canada) developed an evidence- and theory-based pain selfmanagement app for adolescents called iCanCope with PainTM [18].”
BackgroundInfluentialSelf-citationBellcross, C. A., Harmond, L., Floyd-Browning, P., & Singh, R. H. (2015) · Healthcare · doi:10.3390/healthcare3040964 · Cited by 6
“Previous studies have shown smartphone apps to be effective in assisting patients with disease management [15,16].”
BackgroundLynch, M. K., Ward, S., Bazier, A., Stumpff, J., Owens, M. T., & Williams, A. E. (2023) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-023-09966-0 · Cited by 6
“…asked about the transition process adolescents with chronic pain were aware and willing to acknowledge that the transition to adult care would require them to take on more responsibility and ownership for their health care, and would require new skills such as self-advocacy (Stinson et al., 2014a).”
InfluentialThe experience of chronic pain among adolescents: suffering and attempt to overcome pain?
Shaygan, M., & Jaberi, A. (2022) · BMC Pediatrics · doi:10.1186/s12887-022-03617-3 · Cited by 6
Systematic Review and Evaluation of Pain-Related Mobile Applications
Silva, A. G., Queirós, A., Caravau, H., Ferreira, A., & Rocha, N. P. (2016) · IGI Global eBooks · doi:10.4018/978-1-4666-9978-6.ch031 · Cited by 6
Shah, U. E. M., & Chiew, T. K. (2019) · IEEE Access · doi:10.1109/access.2019.2940772 · Cited by 5
“apps [25]–[30] provided pain information with respect to symptoms and disease, thirteen apps provided pain coping strategies [25]–[37], one app provided social support component [28], eight apps [26], [28], [30], [32]–[34], [37], [38] had sub-goals or achievements, all apps had self-reporting feature, twelve apps [25]…”
BackgroundGrau, L. E., Larkin, K., Lalloo, C., Stinson, J., Zempsky, W. T., Ball, S. A., & Buono, F. D. (2022) · BMJ Open · doi:10.1136/bmjopen-2021-056692 · Cited by 5
Self-citation“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
Yadav, L., Gill, T. K., Taylor, A., deYoung, J., Visvanathan, R., & Chehade, M. J. (2021) · Archives of Osteoporosis · doi:10.1007/s11657-021-01031-3 · Cited by 5
Primary Care Providers Welcome Smartphone Apps That Assist in Pediatric Weight Management
SanGiovanni, C., Morella, K., & Roberts, J. R. (2019) · Clinical Pediatrics · doi:10.1177/0009922819832642 · Cited by 5
Ren, Z., Chen, Y., Li, Y., Fan, P., Liu, Z., & Shen, B. (2025) · JMIR Pediatrics and Parenting · doi:10.2196/65826 · Cited by 5
Expectations and Experiences of Internet-Based Therapy for Adolescents with TMD Pain
Bijelic, T., Ekberg, E., Willman, A., & Nilsson, I. (2022) · Journal of Oral & Facial Pain and Headache · doi:10.11607/ofph.3042 · Cited by 4
“35 The origin of these preconceived ideas among the adolescents in the present study is unclear, but it is known that these ideas impact the way they engage in treatment, the way they interact with their caregiver, and their success and satisfaction with treatment.”
A critical analysis of online social support for young people experiencing chronic pain
Kavanagh, E., Chur‐Hansen, A., & Ferencz, N. (2023) · Australian Journal of Psychology · doi:10.1080/00049530.2023.2216303 · Cited by 4
“Emerging evidence suggests that by engaging with OSS, young people with pain can explore their identity and create, maintain, and strengthen social interactions in ways that may be unavailable offline (Forgeron et al., 2019; Kohut et al., 2016; Stinson et al., 2014).”
BackgroundTechnology to Assess and Treat Pain in Pediatric Rheumatology
Connelly, M. A., & Lee, R. R. (2021) · Rheumatic Disease Clinics of North America · doi:10.1016/j.rdc.2021.09.004 · Cited by 4
Buono, F. D., Larkin, K., Phạm, Q., Sousa, D. D., Zempsky, W. T., Lalloo, C., & Stinson, J. (2023) · Cancers · doi:10.3390/cancers15123213 · Cited by 4
Self-citation
Metadata
- 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
- Venue
- Pain Research and Management
- Publisher
- Wiley
- Published
- 2014-01
- Volume
- 19
- Issue
- 5
- Pages
- 257-265
- ISSN
- 1203-6765 (ISSN-L)
- 1918-1523
- 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
- 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 › Medicine › Pediatrics, Perinatology and Child Health › 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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