Exploring the experiences of youth with persistent post-concussion symptoms and their families with an interprofessional team-based assessment

References

• Agnihotri, S., Penner, M., Mallory, K. D., Xie, L., Hickling, A., Joachimides, N., Widgett, E., & Scratch, S. E. (2021). Healthcare utilization and costs associated with persistent post- concussive symptoms. Brain Injury, 35(11), 1382–1389. https://doi.org/10.1080/02699052.2021.1972151
   PubMed Web of Science ®Google Scholar
• Bamm, E. L., Rosenbaum, P., Wilkins, S., Stratford, P., & Mahlberg, N. (2015). Exploring client-centered care experiences in in-patient rehabilitation settings. Global Qualitative Nursing Research, 2, 233339361558203. https://doi.org/10.1177/2333393615582036
   Web of Science ®Google Scholar
• Beech, P., & Norman, I. J. (1995). Patients’ perceptions of the quality of psychiatric nursing care: Findings from a small-scale descriptive study. Journal of Clinical Nursing, 4(2), 117–123. https://doi.org/10.1111/j.1365-2702.1995.tb00019.x
   PubMed Web of Science ®Google Scholar
• Bertakis, K. D., & Azari, R. (2011). Patient-centered care is associated with decreased health care utilization. The Journal of the American Board of Family Medicine, 24(3), 229–239. https://doi.org/10.3122/jabfm.2011.03.100170
   PubMed Web of Science ®Google Scholar
• Birks, M., Chapman, Y., & Francis, K. (2008). Memoing in qualitative research: Probing data and processes. Journal of Research in Nursing, 13(1), 68–75. https://doi.org/10.1177/1744987107081254
   Google Scholar
• Bombard, Y., Baker, G. R., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., Onate, K., Denis, J.-L., & Pomey, M.-P. (2018). Engaging patients to improve quality of care: A systematic review. Implementation Science, 13(1). https://doi.org/10.1186/s13012-018-0784-z
   Google Scholar
• Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637–650. https://doi.org/10.1111/j.1369-7625.2012.00795.x
   PubMed Web of Science ®Google Scholar
• Choudhury, R., Kolstad, A., Prajapati, V., Samuel, G., & Yeates, K. O. (2020). Loss and recovery after concussion: Adolescent patients give voice to their concussion experience. Health Expectations, 23(6), 1533–1542. https://doi.org/10.1111/hex.13138
   PubMed Web of Science ®Google Scholar
• Coffey, A., & Atkinson, P. (1996). Making sense of qualitative data: Complementary research strategies. Sage Publications, Inc.
   Google Scholar
• Comper, P., Hutchison, M., Richards, D., & Mainwaring, L. (2012). A model of current best practice for managing concussion in university athletes: The University of Toronto approach. Journal of Clinical Sport Psychology, 6(3), 231–246. https://doi.org/10.1123/jcsp.6.3.231
   Google Scholar
• Cott, C. (2004). Client-centred rehabilitation: Client perspectives. Disability and Rehabilitation, 26(24), 1411–1422. https://doi.org/10.1080/09638280400000237
   PubMed Web of Science ®Google Scholar
• Crawford, M. J., Rutter, D., Manley, C., Weaver, T., Bhui, K., Fulop, N., & Tyrer, P. (2002). Systematic review of involving patients in the planning and development of health care. BMJ, 325(7375), 1263. https://doi.org/10.1136/bmj.325.7375.1263
   PubMed Web of Science ®Google Scholar
• D’Amour, D., & Oandasan, I. (2005). Interprofessionality as the field of interprofessional practice and interprofessional education: An emerging concept. Journal of Interprofesional Care, 19(1), 8–20. https://doi.org/10.1080/13561820500081604
   PubMedGoogle Scholar
• Davies, S. C., Bernstein, E. R., & Daprano, C. M. (2020). A qualitative inquiry of social and emotional support for students with persistent concussion symptoms. Journal of Educational and Psychological Consultation, 30(2), 156–182. https://doi.org/10.1080/10474412.2019.1649598
   Web of Science ®Google Scholar
• Davis, G. A., Anderson, V., Babl, F. E., Gioia, G. A., Giza, C. C., Meehan, W., Moser, R. S., Purcell, L., Schatz, P., Schneider, K. J., Takagi, M., Yeates, K. O., & Zemek, R. (2017). What is the difference in concussion management in children as compared with adults? A systematic review. British Journal of Sports Medicine, 51(12), 949–957. https://doi.org/10.1136/bjsports-2016-097415
   PubMed Web of Science ®Google Scholar
• Dierckx de Casterlé, B., Gastmans, C., Bryon, E., & Denier, Y. (2012). QUAGOL: A guide for qualitative data analysis. International Journal of Nursing Studies, 49(3), 360–371. https://doi.org/10.1016/j.ijnurstu.2011.09.012
   PubMed Web of Science ®Google Scholar
• Fried, E., Balla, U., Catalogna, M., Kozer, E., Oren-Amit, A., Hadanny, A., & Efrati, S. (2022). Persistent post-concussive syndrome in children after mild traumatic brain injury is prevalent and vastly underdiagnosed. Scientific Reports, 12(1), 4364. https://doi.org/10.1038/s41598-022-08302-0
   PubMed Web of Science ®Google Scholar
• Graffigna, G., Barello, S., & Bonanomi, A. (2017). The role of patient health engagement model (PHE-model) in affecting patient activation and medication adherence: A structural equation model. PLoS ONE, 12(6), e0179865. https://doi.org/10.1371/journal.pone.0179865
   PubMed Web of Science ®Google Scholar
• Guillemin, M., & Gillam, L. (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 10(2), 261–280. https://doi.org/10.1177/1077800403262360
   Web of Science ®Google Scholar
• Harris, M. B., Rafeedie, S., McArthur, D., Babikian, T., Snyder, A., Polster, D., & Giza, C. C. (2019). Addition of occupational therapy to an interdisciplinary concussion clinic improves identification of functional impairments. The Journal of Head Trauma Rehabilitation, 34(6), 425–432. https://doi.org/10.1097/HTR.0000000000000544
   PubMed Web of Science ®Google Scholar
• Hibbard, J. H. (2003). Engaging health care consumers to improve the quality of care. Medical Care, 41(1), 61–70. https://doi.org/10.1097/00005650-200301001-00007
   Web of Science ®Google Scholar
• Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687
   PubMed Web of Science ®Google Scholar
• Institute for Patient and Family Centred Care. (2021). Patient- and family-centered care. https://www.ipfcc.org/
   Google Scholar
• Interprofessional Education Collaborative. (2016). Core competencies for interprofessional collaborative practice: 2016 update.
   Google Scholar
• Kapadia, M., Scheid, A., Fine, E., & Zoffness, R. (2019). Review of the management of pediatric post-concussion syndrome—a multi-disciplinary, individualized approach. Current Reviews in Musculoskeletal Medicine, 12(1), 57–66. https://doi.org/10.1007/s12178-019-09533-x
   PubMed Web of Science ®Google Scholar
• Kita, H., Mallory, K. D., Hickling, A., Wilson, K. E., Kroshus, E., & Reed, N. (2020). Social support during youth concussion recovery. Brain Injury, 34(6), 784–792. https://doi.org/10.1080/02699052.2020.1753243
   Web of Science ®Google Scholar
• Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. https://doi.org/10.1007/s10995-011-0751-7
   PubMed Web of Science ®Google Scholar
• Kvale, S. (1996). The plurality of interpretations. InterViews: An introduction to qualitative research interviewing, 210–228. Sage Publications Inc.
   Google Scholar
• Kvarnström, S. (2008). Difficulties in collaboration : A critical incident study of interprofessional healthcare teamwork. Journal of Interprofessional Care, 22(2), 191–203. https://doi.org/10.1080/13561820701760600
   PubMed Web of Science ®Google Scholar
• Lumba-Brown, A., Yeates, K. O., Sarmiento, K., Breiding, M. J., Haegerich, T. M., Gioia, G. A., Turner, M., Benzel, E. C., Suskauer, S. J., Giza, C. C., Joseph, M., Broomand, C., Weissman, B., Gordon, W., Wright, D. W., Moser, R. S., McAvoy, K., Ewing-Cobbs, L., Duhaime, A. C., … Timmons, S. D. (2018). Centers for disease control and prevention guideline on the diagnosis and management of mild traumatic brain injury among children. JAMA Pediatrics, 172(11), e182853. https://doi.org/10.1001/jamapediatrics.2018.2853
   PubMed Web of Science ®Google Scholar
• Mah, K., Gladstone, B., Cameron, D., & Reed, N. (2021). Thinking otherwise: Bringing young people into pediatric concussion clinical and research practice. Brain Impairment, 23(1), 104–117. https://doi.org/10.1017/BrImp.2021.28
   Web of Science ®Google Scholar
• Mah, K., Gladstone, B., King, G., Reed, N., & Hartman, L. R. (2019). Researching experiences of childhood brain injury: Co-constructing knowledge with children through arts-based research methods. Disability and Rehabilitation, 42(20), 2967–2976. https://doi.org/10.1080/09638288.2019.1574916
   PubMed Web of Science ®Google Scholar
• McCarty, C. A., Zatzick, D., Stein, E., Wang, J., Hilt, R., & Rivara, F. P. (2016). Collaborative care for adolescents with persistent postconcussive symptoms: A randomized trial. Pediatrics, 138(4), e20160459. https://doi.org/10.1542/peds.2016-0459
   PubMed Web of Science ®Google Scholar
• McCrory, P., Meeuwisse, W., Dvořák, J., Aubry, M., Bailes, J., Broglio, S., Cantu, R. C., Cassidy, D., Echemendia, R. J., Castellani, R. J., Davis, G. A., Ellenbogen, R., Emery, C., Engebretsen, L., Feddermann-Demont, N., Giza, C. C., Guskiewicz, K. M., Herring, S., Iverson, G. L., … Vos, P. E. (2017). Consensus statement on concussion in sport-the 5th international conference on concussion in sport held in Berlin, October 2016. British Journal of Sports Medicine, 51(11), 838–847. https://doi.org/10.1136/bjsports-2017-097699
   PubMed Web of Science ®Google Scholar
• Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Sage.
   Google Scholar
• Minney, M. J., Roberts, R. M., Mathias, J. L., Raftos, J., & Kochar, A. (2019). Service and support needs following pediatric brain injury: Perspectives of children with mild traumatic brain injury and their parents. Brain Injury, 33(2), 168–182. https://doi.org/10.1080/02699052.2018.1540794
   PubMed Web of Science ®Google Scholar
• Morrow, S. L. (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology, 52(2), 250–260. https://doi.org/10.1037/0022-0167.52.2.250
   Web of Science ®Google Scholar
• Pabian, P. S., Oliveira, L., Tucker, J., Beato, M., & Gual, C. (2017). Interprofessional management of concussion in sport. Physical Therapy in Sport, 23, 123–132. https://doi.org/10.1016/j.ptsp.2016.09.006
   PubMed Web of Science ®Google Scholar
• Patton, M. Q. (2015). Qualitative analysis and interpretation. In Laughton, D, Axelsen, D. E, Peterson, K. (Eds) Qualitative research & evaluation methods (4th ed., pp. 520–650). SAGE Publications, Inc.
   Google Scholar
• Rand, L., Dunn, M., Slade, I., Upadhyaya, S., & Sheehan, M. (2019). Understanding and using patient experiences as evidence in healthcare priority setting. Cost Effectiveness and Resource Allocation, 17, 20. https://doi.org/10.1186/s12962-019-0188-1
   PubMed Web of Science ®Google Scholar
• Reed, N., Leeder, K., & Zemek, R.; PedCARE Research Team. (2018). Patient engagement in pediatric concussion research. Canadian Medical Association Journal, 190, S28–S30. https://doi.org/10.1503/cmaj.180450
   Web of Science ®Google Scholar
• Reed, N., Zemek, R., Dawson, J., Ledoux, -A.-A., Provvidenza, C., Panicca, M., Tataryn, Z., Sampson, M., Eady, K., Bourke, T., Dean, S., Seguin, R., Babul, S., Bauman, S., Bayley, M., Beauchamp, M., Carson, J., DePompei, R., Edwards, C., & Yeates, K. (2019). Living guideline for diagnosing and managing pediatric concussion. Ontario Neurotrauma Foundation. https://doi.org/10.17605/OSF.IO/3VWN9
   Google Scholar
• Robinson, J. H., Callister, L. C., Berry, J. A., & Dearing, K. A. (2008). Patient-centered care and adherence: Definitions and applications to improve outcomes. Journal of the American Academy of Nurse Practitioners, 20(12), 600–607. https://doi.org/10.1111/j.1745-7599.2008.00360.x
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18(2), 179–183. https://doi.org/10.1002/nur.4770180211
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (2000). Focus on research methods: Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340. https://doi.org/10.1002/1098-240x(200008)23:4334::AID-NUR93.0.CO;2-G
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing & Health, 33(1), 77–84. https://doi.org/10.1002/nur.20362
   PubMed Web of Science ®Google Scholar
• Sang, R. C., Vawda, Y., Greenspoon, D., Reed, N., & Hunt, A. W. (2020). An innovative approach to measuring youth concussion recovery: Occupational performance. British Journal of Occupational Therapy, 83(4), 220–227. https://doi.org/10.1177/0308022619851415
   Web of Science ®Google Scholar
• Scratch, S. E., Rumney, P., Agnihotri, S., & Reed, N. (2019). Pediatric concussion: Managing persistent symptoms with an interdisciplinary approach. Journal of Head Trauma Rehabilitation, 34(6), 385–393. https://doi.org/10.1097/HTR.0000000000000542
   PubMed Web of Science ®Google Scholar
• Stagg, K., Douglas, J., & Iacono, T. (2019). A scoping review of the working alliance in acquired brain injury rehabilitation. Disability and Rehabilitation, 41(4), 489–497. https://doi.org/10.1080/09638288.2017.1396366
   PubMed Web of Science ®Google Scholar
• Sullivan, L., Wysong, M., & Yang, J. (2022). Concussion recovery in children and adolescents: A qualitative study of parents’ experiences. Journal of School Health, 92(2), 132–139. https://doi.org/10.1111/josh.13114
   PubMed Web of Science ®Google Scholar
• Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
   Web of Science ®Google Scholar
• Tracy, S. J., & Hinrichs, M. M. (2017). Big tent criteria for qualitative quality. The International Encyclopedia of Communication Research Methods, 1–10. https://doi.org/10.1002/9781118901731.iecrm0016
   Google Scholar
• Welch Bacon, C. E., Erickson, C. D., Kay, M. C., Weber, M. L., & Valovich Mcleod, T. C. (2017). School nurses’ perceptions and experiences with an interprofessional concussion management team in the secondary school setting. Journal of Interprofessional Care, 31(6), 725–733. https://doi.org/10.1080/13561820.2017.1345873
   PubMed Web of Science ®Google Scholar
• Zemek, R., Barrowman, N., Freedman, S. B., Gravel, J., Gagnon, I., McGahern, C., Aglipay, M., Sangha, G., Boutis, K., Beer, D., Craig, W., Burns, E., Farion, K. J., Mikrogianakis, A., Barlow, K., Dubrovsky, A. S., Meeuwisse, W., Gioia, G., Meehan, W. P., 3rd, & Beauchamp, M. H.; Pediatric Emergency Research Canada (PERC) Concussion Team. (2016). Clinical risk score for persistent postconcussion symptoms among children with acute concussion in the ED. JAMA, 315(10), 1014–1025. https://doi.org/10.1001/jama.2016.1203
   PubMed Web of Science ®Google Scholar
• Zulman, D. M., Haverfield, M. C., Shaw, J. G., Brown-Johnson, C. G., Schwartz, R., Tierney, A. A., Zionts, D. L., Safaeinili, N., Fischer, M., Thadaney Israni, S., Asch, S. M., & Verghese, A. (2020). Practices to foster physician presence and connection with patients in the clinical encounter. JAMA, 323(1), 70–81. https://doi.org/10.1001/jama.2019.19003
   PubMed Web of Science ®Google Scholar