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Articles

Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: A focus on service structure, service organization, and the barriers and facilitators of rehabilitation service provision

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Pages 1697-1727 | Received 14 Jun 2021, Accepted 08 Nov 2022, Published online: 24 Nov 2022

References

  • Anderson, V., Brown, S., Newitt, H., & Hoile, H. (2011). Long-term outcome from childhood traumatic brain injury: Intellectual ability, personality, and quality of life. Neuropsychology, 25(2), 176–184. https://doi.org/10.1037/a0021217
  • Appenteng, R., Nelp, T., Abdelgadir, J., Weledji, N., Haglund, M., Smith, E., Obiga, O., Sakita, F. M., Miguel, E. A., Vissoci, C. M., Rice, H., Vissoci, J. R. N., & Staton, C. (2018). A systematic review and quality analysis of pediatric traumatic brain injury clinical practice guidelines. PLoS One, 13(8), 1–17. https://doi.org/10.1371/journal.pone.0201550
  • Beck, B., Cameron, P. A., Braaf, S., Nunn, A., Fitzgerald, M. C., Judson, R. T., Teague, W. J., Lennox, A., Middleton, J. W., Harrison, J. E., & Gabbe, B. J. (2019). Traumatic spinal cord injury in Victoria, 2007–2016. Medical Journal of Australia, 210(8), 360–366. https://doi.org/10.5694/mja2.50143
  • Bloom, A., Critten, S., Johnson, H., & Wood, C. (2020). A critical review of methods for eliciting voice from children with speech, language and communication needs. Journal of Research in Special Educational Needs, 20(4), 308–320. https://doi.org/10.1111/1471-3802.12491
  • Botchway, E. N., Knight, S., Muscara, F., Greenham, M., D’Cruz, K., Bonyhady, B., Anderson V, Scheinberg, A. (2022). Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions. Neuropsychological Rehabilitation, 32(4), 537–559. https://doi.org/10.1080/09602011.2020.1833945
  • Catroppa, C., Godfrey, C., Rosenfeld, J. V., Hearps, S. S. J., & Anderson, V. A. (2012). Functional recovery ten years after pediatric traumatic brain injury: Outcomes and predictors. Journal of Neurotrauma, 29(16), 2539–2547. https://doi.org/10.1089/neu.2012.2403
  • Cornielje, H., Velema, J. P., & Finkenflügel, H. (2008). Community based rehabilitation programmes: Monitoring and evaluation in order to measure results. Leprosy Review, 79(1), 36–49. https://doi.org/10.47276/lr.79.1.36
  • Dalen, H. E., Nyquist, A., Saebu, M., Roe, C., & Bautz-Holter, E. (2013). Implementation of ICF in goal setting in rehabilitation of children with chronic disabilities at Beitostolen Healthsports Centre. Disability and Rehabilitation, 35(3), 198–205. https://doi.org/10.3109/09638288.2012.690499
  • Danesh-Meyer, H. V., Deva, N. C., Ku, J. Y. F., Carroll, S. C., Tan, Y. W., & Gamble, G. (2007). Differences in practice and personal profiles between male and female ophthalmologists. Clinical and Experimental Ophthalmology, 35(4), 318–323. https://doi.org/10.1111/j.1442-9071.2007.01480.x
  • Dewan, M. C., Mummareddy, N., Wellons, J. C., & Bonfield, C. M. (2016). Epidemiology of global pediatric traumatic brain injury: Qualitative review. World Neurosurgery, 91, 497–509. https://doi.org/10.1016/j.wneu.2016.03.045
  • Ehde, D. M., Wegener, S. T., Williams, R. M., Ephraim, P. L., Stevenson, J. E., Isenberg, P. J., & MacKenzie, E. J. (2013). Developing, testing, and sustaining rehabilitation interventions via participatory action research. Archives of Physical Medicine and Rehabilitation, 94(1 SUPPL.). https://doi.org/10.1016/j.apmr.2012.10.025
  • EI Masry, W. S., Tsubo, M., Katoh, S., EI Miligui, Y. H. S., & Khan, A. (1996). Validation of the American Spinal Injury Association (ASIA) motor score and the National Aucte Spinal Cord Injury Study (NASCIS) motor score. Spine, 21(5), 614–619. https://doi.org/10.1097/00007632-199603010-00015
  • Goodwin, C. (2016). Person-centered care: A definition and essential elements. Journal of the American Geriatrics Society, 64(1), 15–18. https://doi.org/10.1111/jgs.13866
  • Greenberg, J. S., Ruutiainen, A. T., & Kim, H. (2009). Rehabilitation of pediatric spinal cord injury: From acute medical care to rehabilitation and beyond. Journal of Pediatric Rehabilitation Medicine, 2(1), 13–27. https://doi.org/10.3233/PRM-2009-0059
  • Haley, S. M., Coster, W. J., Dumas, H. M., Fragala-Pinkham, M. A., Kramer, J., Ni, P., Tian, F., Kao, Y.-C., Moed, R., & Ludlow, L. H. (2011). Accuracy and precision of the Pediatric Evaluation of Disability Inventory computer-adaptive tests (PEDI-CAT). Developmental Medicine and Child Neurology, 53(12), 1100–1106. https://doi.org/10.1111/j.1469-8749.2011.04107.x
  • Hamilton, B. B., Laughlin, J. A., Fiedler, R. C., & Granger, C. V. (1994). Interrater reliability of the 7-level functional independence measure (FIM). Scandinavian Journal of Rehabilitation Medicine, 26(3), 115–119.
  • Hardcastle, N., Benzon, H. A., & Vavilala, M. S. (2014). Update on the 2012 guidelines for the management of pediatric traumatic brain injury – information for the anesthesiologist. Paediatric Anaesthesia, 24(7), 703–710. https://doi.org/10.1111/pan.12415
  • Harty, M., Griesel, M., & Van der Merwe, A. (2011). The ICF as a common language for rehabilitation goal-setting: Comparing client and professional priorities. Health and Quality of Life Outcomes, 9(1), 87. https://doi.org/10.1186/1477-7525-9-87
  • Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research, 27(4), 591–608. https://doi.org/10.1177/1049732316665344
  • James, S. L., Theadom, A., Ellenbogen, R. G., Bannick, M. S., Montjoy-Venning, W., Lucchesi, L. R., Abbasi, N., Abdulkader, R., Abraha, H. N., Adsuar, J. C., Afarideh, M., Agrawal, S., Ahmadi, A., Ahmed, M. B., Aichour, A. N., Aichour, I., Aichour, M. T. E., Akinyemi, R. O., Akseer, N., … Murray, C. J. L. (2019). Global, regional, and national burden of traumatic brain injury and spinal cord injury, 1990–2016: A systematic analysis for the global burden of disease study 2016. The Lancet Neurology, 18(1), 56–87. https://doi.org/10.1016/S1474-4422(18)30415-0
  • Jenkin, T., Anderson, V., D’Cruz, K., Collins, A., Muscara, F., Scheinberg, A., & Knight, S. (2022). Engaging children and adolescents with acquired brain injury and their families in goal setting: The clinician perspective. Neuropsychological Rehabilitation, 32(1), 104–130. https://doi.org/10.1080/09602011.2020.1801470
  • Jette, D. U., Halbert, J., Iverson, C., Miceli, E., & Shah, P. (2009). Use of standardized outcome measures in physical therapist practice: Perceptions and applications. Physical Therapy, 89(2), 125–135. https://doi.org/10.2522/ptj.20080234
  • Kelly, G., Dunford, C., Forsyth, R., & Kavčič, A. (2019). Using child- and family-centred goal setting as an outcome measure in residential rehabilitation for children and youth with acquired brain injuries: The challenge of predicting expected levels of achievement. Child: Care, Health and Development, 45(2), 286–291. https://doi.org/10.1111/cch.12636
  • King, G., & Chiarello, L. (2014). Family-centered care for children with cerebral palsy: Conceptual and practical considerations to advance care and practice. Journal of Child Neurology, 29(8), 1046–1054. https://doi.org/10.1177/0883073814533009
  • King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24(1), 41–53. https://doi.org/10.1093/jpepsy/24.1.41
  • Kiresuk, T. J., & Sherman, R. E. (1968). Goal attainment scaling: A general method for evaluating comprehensive community mental health programs. Community Mental Health Journal, 4(6), 443–453. https://doi.org/10.1007/BF01530764
  • Knight, S., Takagi, M., Fisher, E., Anderson, V., Lannin, N. A., Tavender, E., & Scheinberg, A. (2019). A systematic critical appraisal of evidence-based clinical practice guidelines for the rehabilitation of children with moderate or severe acquired brain injury. Archives of Physical Medicine and Rehabilitation, 100(4), 711–723. https://doi.org/10.1016/j.apmr.2018.05.031
  • Kochanek, P. M., Tasker, R. C., Carney, N., Totten, A. M., Adelson, P. D., Selden, N. R., Davis-O’Reilly, C., Hart, E. L., Bell, M. J., Bratton, S. L., Grant, G. A., Kissoon, N., Reuter-Rice, K. E., Vavilala, M. S., & Wainwright, M. S. (2019). Guidelines for the management of pediatric severe traumatic brain injury, third edition: Update of the brain trauma foundation guidelines, executive summary. Clinical Neurosurgery, 84(6), 1169–1178. https://doi.org/10.1093/neuros/nyz051
  • Körner, M. (2010). Interprofessional teamwork in medical rehabilitation: A comparison of multidisciplinary and interdisciplinary team approach. Clinical Rehabilitation, 24(8), 745–755. https://doi.org/10.1177/0269215510367538
  • Kuipers, P., Wirz, S., & Hartley, S. (2008). Systematic synthesis of community-based rehabilitation (CBR) project evaluation reports for evidence-based policy: A proof-of-concept study. BMC International Health and Human Rights, 8(3), 1–15.
  • Langdon, K., McLennan, K., Edward, K., Flett, P., McKinlay, L., Russo, R., Scheinberg, A., & Waugh, M.-C. (2015). Standards for the provision of paediatric rehabilitation medicine inpatient services in public and private hospitals. https://www.racp.edu.au/docs/default-source/advocacy-library/afrm-standards-paediatric-rehabilitation-medicine-inpatient-services-in-public-private-hospital.pdf
  • Law, M., Baptiste, S., Mccoll, M., Opzoomer, A., Polatajko, H., & Pollock, N. (1990). The Canadian occupational performance measure: An outcome measure for occupational therapy. Canadian Journal of Occupational Therapy, 57(2), 82–87. https://doi.org/10.1177/000841749005700207
  • Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., & Rosenbaum, P. (2003). Factors affecting family-centred service delivery for children with disabilities. Child: Care, Health and Development, 29(5), 357–366. https://doi.org/10.1046/j.1365-2214.2003.00351.x
  • Liamputtong, P., & Ezzy, D. (2013). Qualitative research methods (4th ed.). Oxford University Press.
  • Lincoln, Y. S., & Gabu, E. G. (1985). Naturalistic inquiry (Vol 75). Sage.
  • Lohmann, S., Decker, J., Müller, M., Strobl, R., & Grill, E. (2011). The ICF forms a useful framework for classifying individual patient goals in post-acute rehabilitation. Journal of Rehabilitation Medicine, 43(2), 151–155. https://doi.org/10.2340/16501977-0657
  • Lustenberger, N. A., Prodinger, B., Dorjbal, D., Rubinelli, S., Schmitt, K., & Scheel-Sailer, A. (2019). Compiling standardized information from clinical practice: Using content analysis and ICF linking rules in a goal-oriented youth rehabilitation program. Disability and Rehabilitation, 41(5), 613–621. https://doi.org/10.1080/09638288.2017.1380718
  • Macciocchi, S., Seel, R. T., Thompson, N., Byams, R., & Bowman, B. (2008). Spinal cord injury and co-occurring traumatic brain injury: Assessment and incidence. Archives of Physical Medicine and Rehabilitation, 89(7), 1350–1357. https://doi.org/10.1016/j.apmr.2007.11.055
  • Majid, M. A. A., Othman, M., Mohamad, S. F., Lim, S. A. H., & Yusof, A. (2017). Piloting for interviews in qualitative research: Operationalization and lessons learnt. International Journal of Academic Research in Business and Social Sciences, 7(4), 1073–1080. https://doi.org/10.6007/IJARBSS/v7-i4/2916
  • Maynard, C. S., Amari, A., Wieczorek, B., Christensen, J. R., & Slifer, K. J. (2010). Interdisciplinary behavioral rehabilitation of pediatric pain-associated disability: Retrospective review of an inpatient treatment protocol. Journal of Pediatric Psychology, 35(2), 128–137. https://doi.org/10.1093/jpepsy/jsp038
  • Meyer, T., Deck, R., & Raspe, H. (2007). Problems completing questionnaires on health status in medical rehabilitation patients. Journal of Rehabilitation Medicine, 39(8), 633–639. https://doi.org/10.2340/16501977-0098
  • Nguyen, L., Cross, A., Rosenbaum, P., & Gorter, J. W. (2021). Use of the international classification of functioning, disability and health to support goal-setting practices in pediatric rehabilitation: A rapid review of the literature. Disability and Rehabilitation, 43(6), 884–894. https://doi.org/10.1080/09638288.2019.1643419
  • Plant, S. E., Tyson, S. F., Kirk, S., & Parsons, J. (2016). What are the barriers and facilitators to goal-setting during rehabilitation for stroke and other acquired brain injuries? A systematic review and meta-synthesis. Clinical Rehabilitation, 30(9), 921–930. https://doi.org/10.1177/0269215516655856
  • QSR International Pty Ltd. (2018). NVivo version 12.
  • Rice, S. A., Blackman, J. A., Braun, S., Linn, R. T., Granger, C. V., & Wagner, D. P. (2005). Rehabilitation of children with traumatic brain injury: Descriptive analysis of a nationwide sample using the WeeFIM. Archives of Physical Medicine and Rehabilitation, 86(4), 834–836. https://doi.org/10.1016/j.apmr.2004.11.006
  • Ryan, G. W., & Bernard, H. R. (2003). Techniques to identify themes. Field methods, 15(1), 85–109.
  • Schrieff-Elson, L. E., Thomas, K. G. F., & Rohlwink, U. K. (2017). Pediatric traumatic brain injury: Outcomes and rehabilitation. In C. Di Rocco, D. Pang, & J. Rutka (Eds.), Textbook of pediatric neurosurgery (pp. 1–28). Springer International Publishing.
  • Scratch, S. E., Stevens, S. A., King, G., Schwellnus, H., Searl, N., & McPherson, A. C. (2020). Mental health care in pediatric rehabilitation hospitals: A biopsychosocial, collaborative, and agency-based service integration approach. Developmental Neurorehabilitation, 23(6), 359–367. https://doi.org/10.1080/17518423.2019.1687600
  • Sheedy, C. K., & Whitter, M. (2009). Guiding principles and elements of recovery-oriented systems of care: What do we know from the research? Journal of Drug Addiction, Education and Eradication, 9(4), 225.
  • Tepas, J. J., Leaphart, C. L., Pieper, P., Beaulieu, C. L., Spierre, L. R., Tuten, J. D., & Celso, B. G. (2009). The effect of delay in rehabilitation on outcome of severe traumatic brain injury. Journal of Pediatric Surgery, 44(2), 368–372. https://doi.org/10.1016/j.jpedsurg.2008.10.089
  • Tobin, G. A., & Begley, C. M. (2004). Methodological rigour within a qualitative framework. Journal of Advanced Nursing, 48(4), 388–396. https://doi.org/10.1111/j.1365-2648.2004.03207.x
  • Tremblay, D., Roberge, D., Touati, N., Maunsell, E., & Berbiche, D. (2017). Effects of interdisciplinary teamwork on patient-reported experience of cancer care. BMC Health Services Research, 17(1), 218. https://doi.org/10.1186/s12913-017-2166-7
  • Turner-Stokes, L. (2009). Goal attainment scaling (GAS) in rehabilitation: A practical guide. Clinical Rehabilitation, 23(4), 362–370. https://doi.org/10.1177/0269215508101742
  • Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing and Health Sciences, 15(3), 398–405. https://doi.org/10.1111/nhs.12048
  • Walters, B. C., Hadley, M. N., Hurlbert, R. J., Aarabi, B., Dhall, S. S., Gelb, D. E., Harrigan, M. R., Rozelle, C. J., Ryken, T. C., & Theodore, N. (2013). Guidelines for the management of acute cervical spine and spinal cord injuries: 2013 update. Neurosurgery, 60(SUPPL. 1), 82–91. https://doi.org/10.1227/01.neu.0000430319.32247.7f
  • Wehman, P., Chen, C. C., West, M., & Cifu, G. (2014). Transition planning for youth with traumatic brain injury: Findings from the National Longitudinal Transition Survey-2. NeuroRehabilitation, 34(2), 365–372. https://doi.org/10.3233/NRE-131029
  • Whyte, J., & Kunz, R. (2011). Rancho Los Amigos Scale. In J. S. Kreutzer, J. DeLuca, & B. Caplan (Eds.), Encyclopedia of clinical neuropsychology (pp. 2110–2211). Springer.
  • Wooldridge, G., Hansmann, A., Aziz, O., & O’Brien, N. (2020). Survey of resources available to implement severe pediatric traumatic brain injury management guidelines in low and middle-income countries. Child’s Nervous System, 36(11), 2647–2655. https://doi.org/10.1007/s00381-020-04603-9
  • World Health Organization and International Spinal Cord Society. (2013). International perspectives on spinal cord injury. World Health Organization.

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