Collaborating with a Youth Council to Improve Chronic Pain Resources

References

• Guidelines on the management of chronic pain in children. Geneva: World Health Organization; 2020.
   Google Scholar
• King S, Chambers CT, Huguet A, MacNevin RC, McGrath PJ, Parker L, MacDonald AJ. The epidemiology of chronic pain in children and adolescents revisited: a systematic review. Pain. 2011;152(12):2729–13. doi:10.1016/j.pain.2011.07.016.
   PubMed Web of Science ®Google Scholar
• Huguet A, Miró J. The severity of chronic pediatric pain: an epidemiological study. J Pain. 2008;9(3):226–36. doi:10.1016/j.jpain.2007.10.015.
   PubMed Web of Science ®Google Scholar
• Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196(4286):129–36. doi:10.1126/science.847460.
   PubMed Web of Science ®Google Scholar
• Borrell-Carrió F, Suchman AL, Epstein RM. The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Ann Fam Med. 2004;2(6):576–82. doi:10.1370/afm.245.
   PubMed Web of Science ®Google Scholar
• Harrison LE, Pate JW, Richardson PA, Ickmans K, Wicksell RK, Simons LE. Best-evidence for the rehabilitation of chronic pain part 1: pediatric pain. J Clin Med. 2019;8(9):1267. doi:10.3390/jcm8091267.
   PubMed Web of Science ®Google Scholar
• Peng P, Stinson JN, Choiniere M, Dion D, Intrater H, LeFort S, Lynch M, Ong M, Rashiq S, Tkachuk G, et al. Dedicated multidisciplinary pain management centres for children in Canada: the current status. Can J Anaesth. 2007;54(12):985–91. doi:10.1007/BF03016632.
   PubMed Web of Science ®Google Scholar
• Bhatia A, Brennan LJ. Dedicated multidisciplinary pain management centres for children. Can J Anaesth. 2008;55(4):255–56. doi:10.1007/BF03021516.
   PubMed Web of Science ®Google Scholar
• Liu A, Anang P, Harling D, Wittmeier K, Gerhold K. Chronic pain in children and adolescents in Manitoba: a retrospective chart review to inform the development of a provincial service for pediatric chronic pain. Can J Pain. 2022;6(1):124–34. doi:10.1080/24740527.2022.2094228.
   PubMed Web of Science ®Google Scholar
• The Canadian Pain Task Force. Chronic Pain in Canada: laying a Foundation for Action. Ottawa (ON): Health Canada; 2019.
   Google Scholar
• Birnie KA, Dib K, Ouellette C, Dib MA, Nelson K, Pahtayken D, Baerg K, Chorney J, Forgeron P, Lamontagne C, et al. Partnering for pain: a priority setting partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada. CMAJ Open. 2019;7(4):E654–E664. doi:10.9778/cmajo.20190060.
   PubMedGoogle Scholar
• Stinson J, White M, Isaac L, Campbell F, Brown S, Ruskin D, Gordon A, Galonski M, Pink L, Buckley N, et al. Understanding the information and service needs of young adults with chronic pain: perspectives of young adults and their providers. Clin J Pain. 2013;29(7):600–12. doi:10.1097/AJP.0b013e31826dce65.
   PubMed Web of Science ®Google Scholar
• The Canadian Pain Task Force. Working together to better understand, prevent, and manage chronic pain: what we heard. Ottawa (ON): Health Canada; 2020.
   Google Scholar
• The Canadian Pain Task Force. An action plan for pain in Canada. Ottawa (ON): Health Canada; 2021.
   Google Scholar
• The James Lind Alliance. The James Lind Alliance priority setting partnerships. 2023 [ accessed 2023 Jun 28]. https://www.jla.nihr.ac.uk/.
   Google Scholar
• Nygaard A, Halvorsrud L, Linnerud S, Grov EK, Bergland A. The James Lind Alliance process approach: scoping review. BMJ Open. 2019;9(8):e027473. doi:10.1136/bmjopen-2018-027473.
   PubMed Web of Science ®Google Scholar
• Alliance. TJL. The James Lind Alliance priority setting partnerships. 2023 [ accessed 2023 Jun 28]. https://www.jla.nihr.ac.uk/.
   Google Scholar
• Coad J, Flay J, Aspinall M, Bilverstone B, Coxhead E, Hones B. Evaluating the impact of involving young people in developing children’s services in an acute hospital trust. J Clin Nurs. 2008;17(23):3115–22. doi:10.1111/j.1365-2702.2008.02634.x.
   PubMed Web of Science ®Google Scholar
• Brown J, Rafferty J, Golding D, Adewale V, Chan L, Pastorello C, Stebbins P, Neukirch J. Patient engagement for youth in multiple facets of healthcare in Rhode Island. R I Med J (2013). 2016;99(8):19–21.
   PubMedGoogle Scholar
• Crowe S, Cresswell K, Robertson A, Huby G, Avery A, Sheikh A. The case study approach. BMC Med Res Methodol. 2011;11(1):100. doi:10.1186/1471-2288-11-100.
   PubMed Web of Science ®Google Scholar
• Stake R. Qualitative case studies. In: Denzin N, Lincoln Y, editors. The sage handbook of qualitative research. 3rd ed. Thousand Oaks (CA): Sage Publications Ltd; 2005. p. 443–66.
   Google Scholar
• Carlsen B, Glenton C. What about N? A methodological study of sample-size reporting in focus group studies. BMC Med Res Methodol. 2011;11(1):26. doi:10.1186/1471-2288-11-26.
   PubMed Web of Science ®Google Scholar
• Thorn BE, Kuhajda MC. Group cognitive therapy for chronic pain. J Clin Psychol. 2006;62(11):1355–66. doi:10.1002/jclp.20315.
   PubMed Web of Science ®Google Scholar
• Restall G. Conceptualizing the outcomes of involving people who use mental health services in policy development. Health Expect. 2015;18(5):1167–79. doi:10.1111/hex.12091.
   PubMed Web of Science ®Google Scholar
• Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge (MA): Harvard University Press; 1979.
   Google Scholar
• Shimmin C, Wittmeier KDM, Lavoie JG, Wicklund ED, Sibley KM. Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis. BMC Health Serv Res. 2017;17(1):539. doi:10.1186/s12913-017-2463-1.
   PubMedGoogle Scholar
• Cunningham NR, Kashikar-Zuck S, Mara C, Goldschneider KR, Revicki DA, Dampier C, Sherry DD, Crosby L, Carle A, Cook KF, et al. Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain. 2017;158(7):1323–31. doi:10.1097/j.pain.0000000000000914.
   PubMed Web of Science ®Google Scholar
• Cook KF, Jensen SE, Schalet BD, Beaumont JL, Amtmann D, Czajkowski S, Dewalt DA, Fries JF, Pilkonis PA, Reeve BB, et al. PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. J Clin Epidemiol. 2016;73:89–102. doi:10.1016/j.jclinepi.2015.08.038.
   PubMed Web of Science ®Google Scholar
• Brown CL, Restall G, Pylypjuk H, Anang P, Gerhold K, Pylypjuk H, Wittmeier K. Understand me: youth with chronic pain on how knowledge gaps influence their pain experience. Can J Pain. 2023;7(1). doi:10.1080/24740527.2022.2146489.
   PubMedGoogle Scholar
• Bowen S, Sustar H, Wolstenholme D, Dearden A. Engaging teenagers productively in service design. Int J Child Comput Interact. 2013;1(3–4):71–81. doi:10.1016/j.ijcci.2014.02.001.
   PubMedGoogle Scholar
• Boivin A, L’Espérance A, Gauvin FP, Dumez V, Macaulay AC, Lehoux P, Abelson J. Patient and public engagement in research and health system decision making: a systematic review of evaluation tools. Health Expect. 2018;21(6):1075–84. doi:10.1111/hex.12804.
   PubMed Web of Science ®Google Scholar
• Canadian Institutes of Health Research. Strategy for patient-oriented research - patient engagement framework. 2022 [ accessed 2022 Dec 21]. https://cihr-irsc.gc.ca/e/48413.html.
   Google Scholar
• Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(1):89. doi:10.1186/1472-6963-14-89.
   PubMed Web of Science ®Google Scholar
• Flynn R, Walton S, Scott SD. Engaging children and families in pediatric health research: a scoping review. Res Involv Engagem. 2019;5(1):32. doi:10.1186/s40900-019-0168-9.
   PubMedGoogle Scholar
• Brown CL, Colbeck M, Fogarty D, Funk S. Learning to live with multiple sclerosis cognitive impairment and how it influences readiness for group cognitive intervention. Disabil Health J. 2016;9(4):638–45. doi:10.1016/j.dhjo.2016.04.010.
   PubMed Web of Science ®Google Scholar
• Peled E, Perel G. Can a structured model for group intervention be responsive to group process? A proposal. Clin Soc Work J. 2010;40(4):391–400. doi:10.1007/s10615-010-0285-2.
   Web of Science ®Google Scholar
• Zoom Video Communications, Inc. Zoom Healthcare. 2023 [accessed 2023 Sept 20]. https://explore.zoom.us/en/industry/healthcare/.
   Google Scholar
• Cella D, Gershon R, Bass M, Rothrock N. Assessment centre scoring service user guide. Version 1.8. Assessment Centre. 2020 [accessed 2021 Mar 21]. https://www.assessmentcenter.net/ac_scoringservice/templates/UserManual.pdf.
   Google Scholar
• Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. doi:10.1177/1049732305276687.
   PubMed Web of Science ®Google Scholar
• Lumivero. NVivo 12. [software]. 2017 [accessed 2023 Sept 20]. http://www.lumivero.com.
   Google Scholar
• Twiddy H, Hanna J, Haynes L. Growing pains: understanding the needs of emerging adults with chronic pain. Br J Pain. 2017;11(3):108–18. doi:10.1177/2049463717709641.
   PubMedGoogle Scholar
• Rosenbloom BN, Rabbitts JA, Palermo TM. A developmental perspective on the impact of chronic pain in late adolescence and early adulthood: implications for assessment and intervention. Pain. 2017;158(9):1629–32. doi:10.1097/j.pain.0000000000000888.
   PubMed Web of Science ®Google Scholar
• Hall AL, Karvounides D, Gelfand AA, Mankin H, Kessel S, Corroo J, Malavolta CP, Pezzuto T, Chadehumbe M, Szperka CL, et al. Improving the patient experience with migraine camp, a one-day group intervention for adolescents with chronic headache and their parents. Headache. 2019;59(8):1392–400. doi:10.1111/head.1357.
   PubMed Web of Science ®Google Scholar
• Hurtubise K, Brousselle A, Noel M, Camden C. What really matters in pediatric chronic pain rehabilitation? Results of a multi-stakeholder nominal group technique study. Disabil Rehabil. 2020;42(12):1675–86. doi:10.1080/09638288.2018.1532462.
   PubMed Web of Science ®Google Scholar
• Ozer EJ, Afifi R, Gibbs L, Mathur RT. Youth engagement and participation: field-building across research and practice. J Adolesc Health. 2018;63(6):671–72. doi:10.1016/j.jadohealth.2018.09.011.
   PubMed Web of Science ®Google Scholar
• Solutions for Kids in Pain. We are a patients included organization. 2022 [accessed 2022 Oct 25]. https://kidsinpain.ca/patients-included/.
   Google Scholar
• Solutions for Kids in Pain. Guide to chronic pain in students: an in-school resource. 2023 [ accessed 2023 Jan 9]. https://kidsinpain.ca/wp-content/uploads/2021/08/FINAL-English-Guide-to-Chronic-Pain-in-Students-1.pdf.
   Google Scholar
• Maly A, Neighborhood VAH. Socioeconomic, and racial influence on chronic pain. Pain Manag Nurs. 2018;19(1):14–22. doi:10.1016/j.pmn.2017.11.004.
   PubMed Web of Science ®Google Scholar
• Wager J, Brown D, Kupitz A, Rosenthal N, Zernikow B. Prevalence and associated psychosocial and health factors of chronic pain in adolescents: differences by sex and age. Eur J Pain. 2020;24(4):761–72. doi:10.1002/ejp.1526.
   PubMed Web of Science ®Google Scholar
• Gender and Sexuality Centre. Trans* Identities and Lives Glossary. Kingston (RI): University of Rhode Island; 2023 [accessed 2023 Sept 20]. https://web.uri.edu/gender-sexuality/resources/lgbtqa-glossary/trans-101-glossary/.
   Google Scholar