Family involvement in rehabilitation programmes for children and adolescents with acquired brain injury: A scoping literature review

References

• Aguilar, J., Cassedy, A., Shultz, E., Kirkwood, M., Stancin, T., Yeates, K., Taylor, H., & Wade, S. (2019). A comparison of 2 online parent skills training interventions for early childhood brain injury: Improvements in internalizing and executive function behaviors. Journal of Head Trauma Rehabilitation, 34(2), 65–76. https://doi.org/10.1097/HTR.0000000000000443
   PubMed Web of Science ®Google Scholar
• Aitken, M., Korehbandi, P., Parnell, D., Parker, J., Stefans, V., Tompkins, E., & Schulz, E. (2005). Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 86(1), 175–179. https://doi.org/10.1016/j.apmr.2004.02.026
   PubMed Web of Science ®Google Scholar
• Analytis, P., Warren, N., & Ponsford, J. (2020). The sibling relationship after acquired brain injury (ABI): perspectives of siblings with ABI and uninjured siblings. Brain Injury, 34(11), 1504–1512. https://doi.org/10.1080/02699052.2020.1809708
   PubMed Web of Science ®Google Scholar
• Anderson, V., Catroppa, C., Morse, S., Haritou, F., & Rosenfeld, J. (2005). Functional plasticity or vulnerability after early brain injury? Pediatrics, 116(6), 1374–1382. https://doi.org/10.1542/peds.2004-1728
   PubMed Web of Science ®Google Scholar
• Anderson, V., Darling, S., Mackay, M., Monagle, P., Greenham, M., Cooper, A., Hunt, R., Hearps, S., & Gordon, A. (2020). Cognitive resilience following paediatric stroke: Biological and environmental predictors: Resilience following paediatric stroke. European Journal of Paediatric Neurology, 25, 52–58. https://doi.org/10.1016/j.ejpn.2019.11.011
   PubMed Web of Science ®Google Scholar
• Anderson, V., Gomes, A., Greenham, M., Hearps, S., Gordon, A., Rinehart, N., Gonzalez, L., Yeates, K., Hajek, C., Lo, W., & Mackay, M. (2014). Social competence following pediatric stroke: Contributions of brain insult and family environment. Social Neuroscience, 9(5), 471–483. https://doi.org/10.1080/17470919.2014.932308
   PubMed Web of Science ®Google Scholar
• Anderson, V., Northam, E., & Wrennall, J. (2019). Developmental neuropsychology: A clinical approach (2nd ed.). Routledge.
   Google Scholar
• Araki, T., Yokota, H., & Morita, A. (2017). Pediatric traumatic brain injury: Characteristic features, diagnosis, and management. Neurologia Medico-Chirurgica, 57(2), 82–93. https://doi.org/10.2176/nmc.ra.2016-0191
   PubMed Web of Science ®Google Scholar
• Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
   Google Scholar
• Aukema, E. J., Last, B. F., Schouten-Van Meeteren, A. Y. N., & Grootenhuis, M. A. (2011). Explorative study on the aftercare of pediatric brain tumor survivors: A parents’ perspective. Supportive Care in Cancer, 19(10), 1637–1646. https://doi.org/10.1007/s00520-010-0995-6
   PubMed Web of Science ®Google Scholar
• Benz, B., Ritz, A., & Kiesow, S. (1999). Influence of age-related factors on long-term outcome after traumatic brain injury (TBI) in children: A review of recent literature and some preliminary findings. Restorative Neurology and Neuroscience, 14, 135–141.
   Web of Science ®Google Scholar
• Botchway, E., Knight, S., Muscara, F., Greenham, M., D’Cruz, K., Bonyhady, B., Anderson, V., & Scheinberg, A. (2020). 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(4https://doi.org/10.1080/09602011.2020.1833945.
   PubMed Web of Science ®Google Scholar
• Bowen, M. (1966). The use of family theory in clinical practice. Comprehensive Psychiatry, 7(5), 345–374. https://doi.org/10.1016/S0010-440X(66)80065-2
   PubMed Web of Science ®Google Scholar
• Braga, L., Da Paz Júnior, A., & Ylvisaker, M. (2005). Direct clinician-delivered versus indirect family-supported rehabilitation of children with traumatic brain injury: A randomized controlled trial. Brain Injury, 19(10), 819–831. https://doi.org/10.1080/02699050500110165
   PubMed Web of Science ®Google Scholar
• Brandt, A. E., Finnanger, T. G., Hypher, R. E., Rø, T. B., Skovlund, E., Andersson, S., Risnes, K., & Stubberud, J. (2021). Rehabilitation of executive function in chronic paediatric brain injury: A randomized controlled trial. BMC Medicine, 19(1), 1–15https://doi.org/10.1186/s12916-021-02129-8.
   PubMed Web of Science ®Google Scholar
• Brown, F., Whittingham, K., Boyd, R., McKinlay, L., & Sofronoff, K. (2015). Does Stepping Stones Triple P plus Acceptance and Commitment Therapy improve parent, couple, and family adjustment following paediatric acquired brain injury? A randomised controlled trial. Behaviour Research and Therapy, 73, 58–66. https://doi.org/10.1016/j.brat.2015.07.001
   PubMed Web of Science ®Google Scholar
• Brown, F., Whittingham, K., Boyd, R., & Sofronoff, K. (2013). A systematic review of parenting interventions for traumatic brain injury: Child and parent outcomes. In Journal of Head Trauma Rehabilitation, 28(5), 349–360. https://doi.org/10.1097/HTR.0b013e318245fed5
   PubMed Web of Science ®Google Scholar
• Brown, F., Whittingham, K., McKinlay, L., Boyd, R., & Sofronoff, K. (2013). Efficacy of stepping stones triple P plus a stress management adjunct for parents of children with an acquired brain injury: The protocol of a randomised controlled trial. Brain Impairment, 14(2), 253–269. https://doi.org/10.1017/BrImp.2013.18
   Web of Science ®Google Scholar
• Brown, F., Whittingham, K., Sofronoff, K., & Boyd, R. (2013). Parenting a child with a traumatic brain injury: Experiences of parents and health professionals. Brain Injury, 27(13–14), 1570–1582. https://doi.org/10.3109/02699052.2013.841996
   PubMed Web of Science ®Google Scholar
• Brown, G., Chadwick, O., Shaffer, D., Rutter, M., & Traub, M. (1981). A prospective study of children with head injuries. III: Psychiatric sequelae. Psychological Medicine, 11(1), 63–78. https://doi.org/10.1017/S0033291700053289
   PubMed Web of Science ®Google Scholar
• Bruns, J., & Hauser, W. A. (2003). The epidemiology of traumatic brain injury: A review. Epilepsia, 44(10), 2–10. https://doi.org/10.1046/j.1528-1157.44.s10.3.x
   PubMed Web of Science ®Google Scholar
• Bursnall, S., Kendall, E., & Degeneffe, C. E. (2018). Regaining equilibrium: Understanding the process of sibling adjustment to pediatric acquired brain injury. Rehabilitation Psychology, 63(3), 447–459. https://doi.org/10.1037/rep0000225
   PubMed Web of Science ®Google Scholar
• Carney, N., Petroni, G., Luján, S., Ballarini, N., Faguaga, G., du Coudray, H. E. M., Huddleston, A. E., Baggio, G., Becerra, J., Busso, L., Dikmen, S., Falcone, R., García, M., González Carrillo, O., Medici, P., Quaglino, M., Randisi, C., Sáenz, S., Temkin, N., & Vanella, E. (2016). Postdischarge care of pediatric traumatic brain injury in Argentina. Pediatric Critical Care Medicine : A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, 17, 658–666. https://doi.org/10.1097/PCC.0000000000000772
   PubMed Web of Science ®Google Scholar
• Catroppa, C., & Anderson, V. (2009). Traumatic brain injury in childhood: Rehabilitation considerations. Developmental Neurorehabilitation, 12(1), 53–61. https://doi.org/10.1080/17518420802634476
   PubMed Web of Science ®Google Scholar
• Catroppa, C., Anderson, V., Morse, S., Haritou, F., & Rosenfeld, J. (2008). Outcome and predictors of functional recovery 5 years following pediatric traumatic brain injury (TBI). Journal of Pediatric Psychology, 33(7), 707–718. https://doi.org/10.1093/jpepsy/jsn006
   PubMed Web of Science ®Google Scholar
• Catroppa, C., Godfrey, C., Rosenfeld, J., Hearps, S., & Anderson, V. (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
   PubMed Web of Science ®Google Scholar
• Catroppa, C., Stone, K., Rosema, S., Soo, C., & Anderson, V. (2014). Preliminary efficacy of an attention and memory intervention post-childhood brain injury. Brain Injury, 28(2), 252–260. https://doi.org/10.3109/02699052.2013.860471
   PubMed Web of Science ®Google Scholar
• Chan, D. Y. K, & FONG, K. N. K. (2011). The effects of problem-solving skills training based on metacognitive principles for children with acquired brain injury attending mainstream schools: a controlled clinical trial. Disability and Rehabilitation, 33(21-22), 2023–2032. http://dx.doi.org/10.3109/09638288.2011.556207
   PubMed Web of Science ®Google Scholar
• Chávez Arana, C., Catroppa, C., Yáñez-Téllez, G., Prieto-Corona, B., de León, M., García, A., Gómez-Raygoza, R., Hearps, S., & Anderson, V. (2020). A parenting program to reduce disruptive behavior in Hispanic children with acquired brain injury: A randomized controlled trial conducted in Mexico. Developmental Neurorehabilitation, 23(4), 218–230. https://doi.org/10.1080/17518423.2019.1645224
   PubMed Web of Science ®Google Scholar
• Chevignard, M., Toure, H., Brugel, D., Poirier, J., & Laurent-Vannier, A. (2010). A comprehensive model of care for rehabilitation of children with acquired brain injuries. Child: Care, Health and Development, 36(1), 31–43. https://doi.org/10.1111/j.1365-2214.2009.00949.x
   PubMed Web of Science ®Google Scholar
• Cohen, M., Heaton, S., Ginn, N., & Eyberg, S. (2012). Parent-Child interaction therapy as a family-oriented approach to behavioral management following pediatric traumatic brain injury: A case report. Journal of Pediatric Psychology, 37(3), 251–261. https://doi.org/10.1093/jpepsy/jsr086
   PubMed Web of Science ®Google Scholar
• Cronin, A. F. (2001). Traumatic brain injury in children: Issues in community function. The American Journal of Occupational Therapy : Official Publication of the American Occupational Therapy Association, 55(4), 377–384. https://doi.org/10.5014/ajot.55.4.377
   PubMed Web of Science ®Google Scholar
• Dise-Lewis, J., Lewis, H., & Reichardt, C. (2009). Brainstars: Pilot data on a team-based intervention program for students Who have acquired brain injury. Journal of Head Trauma Rehabilitation, 24(3), 166–177. https://doi.org/10.1097/HTR.0b013e3181a7ecb0
   PubMed Web of Science ®Google Scholar
• Donders, J. (1992). Premorbid behavioral and psychosocial adjustment of children with traumatic brain injury. Journal of Abnormal Child Psychology, 20(3), 233–246. https://doi.org/10.1007/BF00916690
   PubMed Web of Science ®Google Scholar
• Elder, H. (2013). Te Waka Oranga: An indigenous intervention for working with Māori children and adolescents with traumatic brain injury. Brain Impairment, 14(3), 415–424. https://doi.org/10.1017/BrImp.2013.29
   Web of Science ®Google Scholar
• Emanuelson, I., Wendt, L., Hagberg, I., Marchioni-Johansson, M., Ekberg, G., Olsson, U., Larsson, J., Egerlund, H., Lindgren, K., & Pestat, C. (2003). Early community outreach intervention in children with acquired brain injury. International Journal of Rehabilitation Research, 26, 257–264. https://doi.org/10.1097/01.mrr.0000102053.48781.10
   PubMed Web of Science ®Google Scholar
• Fay, T., Yeates, K., Wade, S., Drotar, D., Stancin, T., & Taylor, H. (2009). Predicting longitudinal patterns of functional deficits in children with traumatic brain injury. Neuropsychology, 23(3), 271–282. https://doi.org/10.1037/a0014936
   PubMed Web of Science ®Google Scholar
• Fisher, A. P., Gies, L. M., Narad, M. E., Austin, C. A., Yeates, K. O., Taylor, G., Zhang, H., Wade, N., & L, S. (2022). Parent- and adolescent-reported executive functioning in the context of randomized controlled trials of online family problem-solving therapy. Journal of the International Neuropsychological Society, 28(2), 123–129. https://doi.org/10.1017/S1355617721000308
   PubMed Web of Science ®Google Scholar
• Forsyth, R., & Basu, A. (2015). The promotion of recovery through rehabilitation after acquired brain injury in children. Developmental Medicine and Child Neurology, 57(1), 16–22. https://doi.org/10.1111/dmcn.12575
   PubMed Web of Science ®Google Scholar
• Fraas, M., & Bellerose, A. (2010). Mentoring programme for adolescent survivors of acquired brain injury. Brain Injury, 24(1), 50–61. https://doi.org/10.3109/02699050903446781
   PubMed Web of Science ®Google Scholar
• Freeman, E., Burrell, B., & Sedger, R. (1990). Severe brain injury: Intensive family involvement in community-based rehabilitation. Medical Journal of Australia, 153(11–12), 730–732. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed4&NEWS=N&AN=21019192.
   PubMed Web of Science ®Google Scholar
• Gan, C., & Ballantyne, M. (2016). Brain injury family intervention for adolescents: A solution-focused approach. NeuroRehabilitation, 38(3), 231–241. https://doi.org/10.3233/NRE-1601315
   PubMed Web of Science ®Google Scholar
• Gan, C., Gargaro, J., Kreutzer, J., Boschen, K., & Wright, F. (2010). Development and preliminary evaluation of a structured family system intervention for adolescents with brain injury and their families. Brain Injury, 24(4), 651–663. https://doi.org/10.3109/02699051003692142
   PubMed Web of Science ®Google Scholar
• Gan, C., & Wright, F. (2019). Development of the family needs questionnaire - pediatric version [FNQ-P] - phase I. Brain Injury, 33(5), 623–632. https://doi.org/10.1080/02699052.2019.1566836
   PubMed Web of Science ®Google Scholar
• Garcia, D., Rodríguez, G. M., Lorenzo, N. E., Coto, J., Blizzard, A., Farias, A., Smith, N. D. W., Kuluz, J., & Bagner, D. M. (2021). Intensive parent-child interaction therapy for children with traumatic brain injury: Feasibility study. Journal of Pediatric Psychology, 46(7), 844–855. https://doi.org/10.1093/jpepsy/jsab040
   PubMed Web of Science ®Google Scholar
• Gilkey, S., Carey, J., & Wade, S. (2009). Families in crisis: Considerations for the use of web-based treatment models in family therapy. Families in Society, 90(1), 37–45. https://doi.org/10.1606/1044-3894.3843
   Web of Science ®Google Scholar
• Gill, D., & Wells, D. (2000). Forever different: Experiences of living with a sibling who has a traumatic brain injury. Rehabilitation Nursing, 25(2), 48–53. https://doi.org/10.1002/j.2048-7940.2000.tb01862.x
   Google Scholar
• Gillett, J. (2004). The Pediatric Acquired Brain Injury Community Outreach Program (PABICOP) - an innovative comprehensive model of care for children and youth with an acquired brain injury. NeuroRehabilitation, 19(3), 207–218. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed8&NEWS=N&AN=39331174
   PubMed Web of Science ®Google Scholar
• Gilmore, R., Sakzewski, L., Ziviani, J., Mcintyre, S., Smithers Sheedy, H., Hilton, N., Williams, T., Quinn, K., Sarandrea, A., Laugeson, E., & Chatfield, M. (2019). Multicentre, randomised waitlist control trial investigating a parent-assisted social skills group programme for adolescents with brain injuries: Protocol for the friends project. BMJ Open, 9(8), e029587. https://doi.org/10.1136/bmjopen-2019-029587
   PubMed Web of Science ®Google Scholar
• Gilmore, R., Ziviani, J., Mcintyre, S., Smithers Sheedy, H., Hilton, N., Williams, T., Chatfield, M. D., Laugeson, E., Sakzewski, L., Goodman, S., Quinn, K., & Balde, I. (2022). Program for the education and enrichment of relational skills for adolescents with an acquired brain injury: A randomized controlled trial. Developmental Medicine and Child Neurology, 64(6), 771–779. https://doi.org/10.1111/dmcn.15144
   PubMed Web of Science ®Google Scholar
• Glang, A., Todis, B., Ettel, D., Wade, S., & Yeates, K. (2018). Results from a randomized trial evaluating a hospital–school transition support model for students hospitalized with traumatic brain injury. Brain Injury, 32(5), 608–616. https://doi.org/10.1080/02699052.2018.1433329
   PubMed Web of Science ®Google Scholar
• Glang, A., Tyler, J., Pearson, S., Todis, B., & Morvant, M. (2004). Improving educational services for students with TBI through statewide consulting teams. NeuroRehabilitation, 19(3), 219–231. https://doi.org/10.3233/NRE-2004-19305
   PubMed Web of Science ®Google Scholar
• Gottesman, M. (1999). Patient eduation review. Enabling parents to “read” their baby. Journal of Pediatric Health Care, 3(1), 148–151. https://doi.org/10.1016/S0891-5245(99)90080-9
   Google Scholar
• Greenspan, A., & MacKenzie, E. (2000). Use and need for post-acute services following paediatric head injury. Brain Injury, 14(5), 417–429. https://doi.org/10.1080/026990500120529
   PubMed Web of Science ®Google Scholar
• Hickey, L., Anderson, V., Hearps, S., & Jordan, B. (2018). Family forward: A social work clinical trial promoting family adaptation following paediatric acquired brain injury. Brain Injury, 32(7), 867–878. https://doi.org/10.1080/02699052.2018.1466195
   PubMed Web of Science ®Google Scholar
• Hickey, L., Anderson, V., & Jordan, B. (2016). Family forward: Promoting family adaptation following pediatric acquired brain injury. Journal of Social Work in Disability and Rehabilitation, 15(3–4), 179–200. https://doi.org/10.1080/1536710X.2016.1220884
   PubMed Web of Science ®Google Scholar
• Hoagwood, K. E. (2005). Family-based services in children’s mental health: A research review and synthesis. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(7), 690–713. https://doi.org/10.1111/j.1469-7610.2005.01451.x
   PubMed Web of Science ®Google Scholar
• Holland, D., & Holland, D. (2002). Children’s health promotion through caregiver preparation in pediatric brain injury settings: Compensating for shortened hospital stays with a three-phase model of health education and annotated bibliography. Issues in Comprehensive Pediatric Nursing, 25(2), 73–96. https://doi.org/10.1080/01460860290042512
   PubMedGoogle Scholar
• Holthe, I. L., Rohrer-Baumgartner, N., Svendsen, E. J., Hauger, S. L., Forslund, M. V., Borgen, I. M. H., Øra, H. P., Kleffelgård, I., Strand-Saugnes, A. P., Egeland, J., Røe, C., Wade, S. L., & Løvstad, M. (2022). Feasibility and acceptability of a complex telerehabilitation intervention for pediatric acquired brain injury: The child in context intervention (CICI). Journal of Clinical Medicine, 11(9), 2564https://doi.org/10.3390/jcm11092564.
   PubMed Web of Science ®Google Scholar
• Hypher, R., Brandt, A. E., Skovlund, E., Skarbø, A. B., Barder, H. E., Andersson, S., Rø, T. B., Risnes, K., Finnanger, T. G., & Stubberud, J. (2022). Metacognitive strategy training versus psychoeducation for improving fatigue in children and adolescents with acquired brain injuries: A randomized controlled trial. Neuropsychology, 36(7), 579–596. https://doi.org/10.1037/neu0000845
   PubMed Web of Science ®Google Scholar
• Jenkin, T., Anderson, V. A., D’Cruz, K., Scheinberg, A., & Knight, S. (2022). Family-centred service in paediatric acquired brain injury rehabilitation: Bridging the gaps. Frontiers in Rehabilitation Sciences, 3. https://doi.org/10.3389/fresc.2022.1085967
   PubMedGoogle Scholar
• Jenkin, T., D’Cruz, K., Anderson, V., Scheinberg, A., & Knight, S. (2023). Family-centred service in paediatric acquired brain injury rehabilitation: Perspectives of children and adolescents and their families. Disability and Rehabilitation, 45(19), 3087–3098. https://doi.org/10.1080/09638288.2022.2121864
   PubMed Web of Science ®Google Scholar
• Jimenez, N., Fuentes, M., Virtue, A., Alonso-Gonzalez, L., Lopez, E., Zhou, C., Crawley, D., Apkon, S., Johnston, B., & Rivara, F. (2021). Feasibility and acceptability of a telephone-based intervention for Hispanic children to promote treatment adherence after traumatic brain injury: A pilot study. Journal of Head Trauma Rehabilitation, 36(4), 274–281. https://doi.org/10.1097/HTR.0000000000000658
   PubMed Web of Science ®Google Scholar
• Jordan, J., & Linden, M. A. (2013). It’s like a problem that doesn’t exist”: The emotional well-being of mothers caring for a child with brain injury. Brain Injury, 27(9), 1063–1072. https://doi.org/10.3109/02699052.2013.794962
   PubMed Web of Science ®Google Scholar
• Karman, N., Maryles, J., Baker, R. W., Simpser, E., & Berger-Gross, P. (2003). Constraint-induced movement therapy for hemiplegic children with acquired brain injuries. The Journal of Head Trauma Rehabilitation, 18(3), 259–267. https://doi.org/10.1097/00001199-200305000-00004
   PubMed Web of Science ®Google Scholar
• Karns, Christina M, Wade, Shari L., Slocumb, Jody, Keating, Tom, Gau, Jeff M, Slomine, Beth S., Suskauer, Stacy J, & Glang, Ann. (2023). Traumatic Brain Injury Positive Strategies for Families: A Pilot Randomized Controlled Trial of an Online Parent-Training Program. Archives of Physical Medicine and Rehabilitation, 104(7), 1026–1034. http://dx.doi.org/10.1016/j.apmr.2023.03.013
   PubMed Web of Science ®Google Scholar
• Karns, C. M., Wade, S. L., Slocumb, J., Keating, T., Gau, J. M., Slomine, B. S., Suskauer, S. J., & Glang, A. (2023). Traumatic brain injury positive strategies for families: A pilot randomized controlled trial of an online parent-training program. Archives of Physical Medicine and Rehabilitation, 104(7), 1026–1034. https://doi.org/10.1016/j.apmr.2023.03.013
   PubMed Web of Science ®Google Scholar
• Kazak, A. E. (2006). Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine. Families, Systems, & Health, 24(4), 381–395. https://doi.org/10.1037/1091-7527.24.4.381
   Google Scholar
• Keetley, R., Radford, K., & Manning, J. C. (2019). A scoping review of the needs of children and young people with acquired brain injuries and their families. Brain Injury, 33(9), 1117–1128. https://doi.org/10.1080/02699052.2019.1637542
   PubMed Web of Science ®Google Scholar
• Kerr, M., & Bowen, M. (1988). Family evaluation: An approach based on Bowen theory. Norton.
   Google Scholar
• King, G., Tucker, M., Baldwin, P., Lowry, K., Laporta, J., & Martens, L. (2002). A life needs model of pediatric service delivery. Physical & Occupational Therapy In Pediatrics, 22(2), 53–77. https://doi.org/10.1300/J006v22n02_04
   PubMedGoogle Scholar
• King, G., Williams, L., & Hahn Goldberg, S. (2017). Family-oriented services in pediatric rehabilitation: A scoping review and framework to promote parent and family wellness. Child: Care, Health and Development, 43(3), 334–347. https://doi.org/10.1111/cch.12435
   PubMed Web of Science ®Google Scholar
• Kirk, S., Fallon, D., Fraser, C., Robinson, G., & Vassallo, G. (2014). Supporting parents following childhood traumatic brain injury: A qualitative study to examine information and emotional support needs across key care transitions. Child: Care, Health and Development, 41(2), 303–313. https://doi.org/10.1111/cch.12173
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Kokorelias, K. M., Gignac, M. A. M., Naglie, G., & Cameron, J. I. (2019). Towards a universal model of family centered care: A scoping review. BMC Health Services Research, 19(1), 1–11. https://doi.org/10.1186/s12913-019-4394-5
   PubMed Web of Science ®Google Scholar
• Krasny-Pacini, A., Limond, J., Evans, J., Hiebel, J., Bendjelida, K., & Chevignard, M. (2014). Context-Sensitive goal management training for everyday executive dysfunction in children after severe traumatic brain injury. Journal of Head Trauma Rehabilitation, 29(5), E49–E64. https://doi.org/10.1097/HTR.0000000000000015
   PubMed 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
• Kurowski, B., Stancin, T., Taylor, H., McNally, K., Kirkwood, M., Cassedy, A., King, E., Sklut, M., Narad, M., & Wade, S. (2018). Comparative effectiveness of family problem-solving therapy (F-PST) for adolescents after traumatic brain injury: Protocol for a randomized, multicenter, clinical trial. Contemporary Clinical Trials Communications, 10(December), 111–120. https://doi.org/10.1016/j.conctc.2018.04.001
   PubMedGoogle Scholar
• Kurowski, B., Taylor, H., McNally, K., Kirkwood, M., Cassedy, A., Horn, P., Stancin, T., & Wade, S. (2020). Online family problem-solving therapy (F-PST) for executive and behavioral dysfunction after traumatic brain injury in adolescents: A randomized, multicenter. Comparative Effectiveness Clinical Trial. Journal of Head Trauma Rehabilitation, 35(3), 165–174. https://doi.org/10.1097/HTR.0000000000000545
   PubMed Web of Science ®Google Scholar
• Lebrault, H., Chavanne, C., Abada, G., Latinovic, B., Varillon, S., Bertrand, A. F., Oudjedi, E., Krasny-Pacini, A., & Chevignard, M. (2021). Exploring the use of the cognitive orientation to daily occupational performance approach (CO-OP) with children with executive functions deficits after severe acquired brain injury: A single case experimental design study. Annals of Physical and Rehabilitation Medicine, 64(5), 101535https://doi.org/10.1016/j.rehab.2021.101535.
   PubMed Web of Science ®Google Scholar
• Litchfield, R., & MacDougall, C. (2002). Professional issues for physiotherapists in family-centred and community-based settings. Australian Journal of Physiotherapy, 48(2), 105–112. https://doi.org/10.1016/S0004-9514(14)60204-X
   PubMed Web of Science ®Google Scholar
• Luiselli, J., Gardner, R., Arons, M., McDonald, H., Madigan, C., Marchese, N., Peck, E., Potoczny-Gray, A., & Simon, M. (1998). Comprehensive community-based education and neurorehabilitation for children and adolescents with traumatic brain injury. Behavioral Interventions, 13(3), 181–200. https://doi.org/10.1002/(SICI)1099-078X(199808)13:3<181::AID-BIN16>3.0.CO;2-P
   Google Scholar
• Luzinat, K., Analytis, P., Hicks, A., Warren, N., & Ponsford, J. (2018). The experience of a recreational camp for families with a child or young person with acquired brain injury. Neuropsychological Rehabilitation, 30(2), 233–248. https://doi.org/10.1080/09602011.2018.1461657
   PubMed Web of Science ®Google Scholar
• Maggard, B. L., Gies, L. M., Sidol, C. A., Moscato, E. L., Schmidt, M., Landry, S. H., Makoroff, K. L., Rhine, T. D., & Wade, S. L. (2023). Online intervention for caregivers of children with early traumatic brain injury. Pilot Trial. Journal of Pediatric Psychology, 48(3), 205–215. https://doi.org/10.1093/jpepsy/jsac080
   PubMed Web of Science ®Google Scholar
• Maitz, E. A., & Sachs, P. R. (1995). Treating families of individuals with traumatic brain injury from a family systems perspective. In Journal of Head Trauma Rehabilitation, 10(2), 1–11. https://doi.org/10.1097/00001199-199504000-00003
   Web of Science ®Google Scholar
• Manning, J. C., Hemingway, P., & Redsell, S. A. (2018). Survived so what? Identifying priorities for research with children and families post-paediatric intensive care unit. Nursing in Critical Care, 23(2), 68–74. https://doi.org/10.1111/nicc.12298
   PubMed Web of Science ®Google Scholar
• Mast, J., Antonini, T., Raj, S., Oberjohn, K., Cassedy, A., Makoroff, K., & Wade, S. (2014). Web-based parenting skills to reduce behavior problems following abusive head trauma: A pilot study. Child Abuse & Neglect, 38(9), 1487–1495. https://doi.org/10.1016/j.chiabu.2014.04.012
   PubMed Web of Science ®Google Scholar
• McKinlay, A., Linden, M., DePompei, R., Aaro Jonsson, C., Anderson, V., Braga, L., Castelli, E., de Koning, P., Hawley, C. A., Hermans, E., Kristiansen, I., Madden, A., Rumney, P., Savage, R., & Wicks, B. (2016). Service provision for children and young people with acquired brain injury: Practice recommendations. Brain Injury, 30(13–14), 1656–1664. https://doi.org/10.1080/02699052.2016.1201592
   PubMed Web of Science ®Google Scholar
• Miller, I., Bishop, D., Epstein, N., & Keitner, G. (1985). The McMaster family assessment device: Reliability and validity. Journal of Marital and Family Therapy, 11, 345–356. https://doi.org/10.1111/j.1752-0606.1985.tb00028.x
   Web of Science ®Google Scholar
• Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & PRISMA (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement (reprinted from annals of internal medicine). Physical Therapy, 89(9), 873–880. https://doi.org/10.1093/ptj/89.9.873
   PubMed Web of Science ®Google Scholar
• Moore, T., Gilles, E., McComas, J., & Symons, F. (2010). Functional analysis and treatment of self-injurious behaviour in a young child with traumatic brain injury. Brain Injury, 24(12), 1511–1518. https://doi.org/10.3109/02699052.2010.523043
   PubMed Web of Science ®Google Scholar
• Muscara, F., Burke, K., McCarthy, M., Anderson, V., Hearps, S., Hearps, S., Dimovski, A., & Nicholson, J. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a breath cohort study. BMC Psychiatry, 15(153), 1–11https://doi.org/10.1186/s12888-015-0519-5.
   PubMedGoogle Scholar
• Narad, M., Raj, S., Yeates, K., Taylor, H., Kirkwood, M., Stancin, T., & Wade, S. (2019). Randomized controlled trial of an online problem-solving intervention following adolescent traumatic brain injury: Family outcomes. Archives of Physical Medicine and Rehabilitation, 100(5), 811–820. https://doi.org/10.1016/j.apmr.2019.01.010
   PubMed Web of Science ®Google Scholar
• Odom, S. L., Yoder, P., & Hill, G. (1988). Developmental intervention for infants with handicaps: Purposes and programs. Journal of Special Education, 22(1), 11–24. https://eds-b-ebscohost-com.ezp.lib.unimelb.edu.au/eds/pdfviewer/pdfviewer?vid=2&sid=f8e59294-ab91-4be9-94e0-7d951b4706a5%40sessionmgr101
   Web of Science ®Google Scholar
• Pace, G., Schlund, M., Hazard-Haupt, T., Christensen, J., Lashno, M., McIver, J., Peterson, K., & Morgan, K. (1999). Characteristics and outcomes of a home and community-based neurorehabilitation programme. Brain Injury, 13(7), 535–546. https://doi.org/10.1080/026990599121430
   PubMed Web of Science ®Google Scholar
• Pastore, V., Colombo, K., Liscio, M., Galbiati, S., Adduci, A., Villa, F., & Strazzer, S. (2011). Efficacy of cognitive behavioural therapy for children and adolescents with traumatic brain injury. Disability and Rehabilitation, 33(8), 675–683. https://doi.org/10.3109/09638288.2010.506239
   PubMed Web of Science ®Google Scholar
• Poggi, G., Liscio, M., Pastore, V., Adduci, A., Galbiati, S., Spreafico, F., Gandola, L., & Massimino, M. (2009). Psychological intervention in young brain tumor survivors: The efficacy of the cognitive behavioural approach. Disability and Rehabilitation, 31(13), 1066–1073. https://doi.org/10.1080/09638280802509546
   PubMed Web of Science ®Google Scholar
• Pollock, A., D’Cruz, K., Scheinberg, A., Botchway, E., Harms, L., Amor, D. J., Anderson, V., Bonyhady, B., & Knight, S. (2022). Family-centred care for children with traumatic brain injury and/or spinal cord injury: A qualitative study of service provider perspectives during the COVID-19 pandemic. BMJ Open, 12(6), e059534https://doi.org/10.1136/bmjopen-2021-059534.
   PubMed Web of Science ®Google Scholar
• Pruneti, C., Cantini, R., & Baracchini-Muratorio, G. (1989). Behavioral treatment of children after severe head injury: A pilot study. The Italian Journal of Neurological Sciences, 10(5), 491–498. https://doi.org/10.1007/BF02333944
   PubMedGoogle Scholar
• Raj, S., Zhang, N., Kirkwood, M., Taylor, H., Stancin, T., Brown, T., & Wade, S. (2018). Online family problem solving for pediatric traumatic brain injury: Influences of parental marital status and participation on adolescent outcomes. Journal of Head Trauma Rehabilitation, 33(3), 158–166. https://doi.org/10.1097/HTR.0000000000000331
   PubMed Web of Science ®Google Scholar
• Rivara, J. B., Jaffe, K. M., Polissar, N. L., Fay, G. C., Martin, K. M., Shurtleff, H. A., & Liao, S. (1994). Family functioning and children’s academic performance and behavior problems in the year following traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 75(4), 369–379. https://doi.org/10.1016/0003-9993(94)90157-0
   PubMed Web of Science ®Google Scholar
• Rohrer-Baumgartner, N., Holthe, I. L., Svendsen, E. J., Røe, C., Egeland, J., Borgen, I. M. H., Hauger, S. L., Forslund, M. v., Brunborg, C., Øra, H. P., Dahl, H. M., Bragstad, L. K., Killi, E. M., Sandhaug, M., Kleffelgård, I., Strand-Saugnes, A. P., Dahl-Hilstad, I., Ponsford, J., Winter, L., … Løvstad, M. (2022). Rehabilitation for children with chronic acquired brain injury in the child in context intervention (CICI) study: Study protocol for a randomized controlled trial. Trials, 23(1), 169https://doi.org/10.1186/s13063-022-06048-8.
   PubMedGoogle Scholar
• Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centred service: A conceptual framework and research review. Physical & Occupational Therapy In Pediatrics, 18(1), 1–20. https://doi.org/10.1300/J006v18n01_01
   Google Scholar
• Rutter, M. (1981). Psychological sequelae of brain damage in children. American Journal of Psychiatry, 138, 1533–1544. https://doi.org/10.1176/ajp.138.12.1533
   PubMed Web of Science ®Google Scholar
• Rutter, M., Chadwick, O., & Shaffer, D. (1983). Head injury. In M. Rutter (Ed.), Developmental neuropsychiatry (pp. 83–111). The Guilford Press.
   Google Scholar
• Rutter, M., Chadwick, O., Shaffer, D., & Brown, C. (1980). A prospective study of children with head injuries, I: Description and methods. Psychological Medicine, 10, 633–645. https://doi.org/10.1017/S0033291700054933
   PubMed Web of Science ®Google Scholar
• Sargénius, H. L., Andersson, S., Haugen, I., Hypher, R., Brandt, A. E., Finnanger, T. G., Rø, T. B., Risnes, K., & Stubberud, J. (2023). Cognitive rehabilitation in paediatric acquired brain injury—A 2-year follow-up of a randomised controlled trial. Frontiers in Neurology, 14, 1173480https://doi.org/10.3389/fneur.2023.1173480.
   PubMedGoogle Scholar
• Shelton, T. L., Jeppson, E. S., & Johnson, B. H. (1987). Family-centred care for children with special health care needs. Association for the Care of Children’s Health.
   Google Scholar
• Singer, G., Glang, A., Nixon, C., Cooley, E., Kerns, K., Williams, D., & Powers, L. (1994). A comparison of two psychosocial interventions for parents of children with acquired brain injury: An exploratory study. Journal of Head Trauma Rehabilitation, 9(4), 38–49. https://doi.org/10.1097/00001199-199412000-00006
   Google Scholar
• Slattery, Peter, Saeri, Alexander K, & Bragge, Peter. (2020). Research co-design in health: a rapid overview of reviews. Health Research Policy and Systems, 18(1). http://dx.doi.org/10.1186/s12961-020-0528-9
   PubMed Web of Science ®Google Scholar
• Slomine, B. S., McCarthy, M. L., Ding, R., MacKenzie, E. J., Jaffe, K. M., Aitken, M. E., Durbin, D. R., Christensen, J. R., Dorsch, A. M., Paidas, C. N., Berk, R., Houseknecht, E., Ziegfeld, S., Knight, V. M., Korehbandi, P., Parnell, D., & Klotz, P. (2006). Health care utilization and needs after pediatric traumatic brain injury. Pediatrics, 117(4), e663–e674https://doi.org/10.1542/peds.2005-1892.
   PubMed Web of Science ®Google Scholar
• Soo, C. A., Tate, R. L., Catroppa, C., Benson, S., McDonald, S., Rapee, R. M., & Anderson, V. (2022). A randomized controlled trial of cognitive behavioural therapy for managing anxiety in adolescents with acquired brain injury. Neuropsychological Rehabilitation, 34(1), 74–102https://doi.org/10.1080/09602011.2022.2154811.
   PubMed Web of Science ®Google Scholar
• Stubberud, Jan, Holthe, Ingvil L, Løvstad, Marianne, Schanke, Anne-Kristine, Brandt, Anne, & Finnanger, Torun. (2021). The feasibility and acceptability of goal management training of executive functions in children with spina bifida and acquired brain injury. Neuropsychological Rehabilitation, 31(4), 601–620. http://dx.doi.org/10.1080/09602011.2020.1723649
   PubMed Web of Science ®Google Scholar
• Svendsen, E. J., Killi, E. M., Rohrer-Baumgartner, N., Holthe, I. L., Sandhaug, M., Borgen, I. M. H., Wade, S. L., Hauger, S. L., Løvstad, M., & Bragstad, L. K. (2023). Children’s, parents’, and teachers’ experiences of the feasibility of a telerehabilitation intervention for children with acquired brain injury in the chronic phase – a qualitative study of acceptability and participation in the child In context intervention (CICI). BMC Health Services Research, 23(1), 603https://doi.org/10.1186/s12913-023-09589-z.
   PubMed Web of Science ®Google Scholar
• Taylor, H. (2004). Research on outcomes of pediatric traumatic brain injury: Current advances and future directions. Developmental Neuropsychology, 25(1–2), 199–225. https://doi.org/10.1207/s15326942dn2501&amp;2_11
   PubMed Web of Science ®Google Scholar
• Teichner, Gordon, Golden, Charles J, & Giannaris, William J.. (1999). A Multimodal Approach to Treatment of Aggression in a Severely Brain-injured Adolescent. Rehabilitation Nursing, 24(5), 207–211. http://dx.doi.org/10.1002/j.2048-7940.1999.tb02180.x
   PubMedGoogle Scholar
• Thomas, D. R. (2006). A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), 237–246. https://doi.org/10.1177/1098214005283748
   Web of Science ®Google Scholar
• Thomas, J., & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 1–10. https://doi.org/10.1186/1471-2288-8-45
   PubMed Web of Science ®Google Scholar
• Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., … Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
   PubMed Web of Science ®Google Scholar
• Uniacke, S., Browne, T. K., & Shields, L. (2018). How should we understand family-centred care? Journal of Child Health Care, 22(3), 460–469. https://doi.org/10.1177/1367493517753083
   PubMed Web of Science ®Google Scholar
• van’t Hooft, I., Andersson, K., Bergman, B., Sejersen, T., von Wendt, L., & Bartfai, A. (2007). Sustained favorable effects of cognitive training in children with acquired brain injuries. NeuroRehabilitation, 22(2), 109–116. https://doi.org/10.3233/NRE-2007-22206
   PubMed Web of Science ®Google Scholar
• van't Hooft, Ingrid, & Norberg, Annika Lindahl. (2010). SMART cognitive training combined with a parental coaching programme for three children treated for medulloblastoma. NeuroRehabilitation, 26(2), 105–113. http://dx.doi.org/10.3233/NRE-2010-0541
   PubMed Web of Science ®Google Scholar
• Wade, S., Drotar, D., Taylor, H., & Stancin, T. (1995). Assessing the effects of traumatic brain injury on family functioning: Conceptual and methodological issues. Journal of Pediatric Psychology, 20(6), 737–752. https://doi.org/10.1093/jpepsy/20.6.737
   PubMed Web of Science ®Google Scholar
• Wade, S., Oberjohn, K., Conaway, K., Osinska, P., & Bangert, L. (2011). Live coaching of parenting skills using the internet: Implications for clinical practice. Professional Psychology: Research and Practice, 42(6), 487–493. https://doi.org/10.1037/a0025222
   Web of Science ®Google Scholar
• Wade, S., Taylor, H., Yeates, K., Drotar, D., Stancin, T., Minich, N., & Schluchter, M. (2006). Long-term parental and family adaptation following pediatric brain injury. Journal of Pediatric Psychology, 31(10), 1072–1083. https://doi.org/10.1093/jpepsy/jsj077
   PubMed Web of Science ®Google Scholar
• Wade, S., Walz, N., Carey, J., McMullen, K., Cass, J., Mark, E., & Yeates, K. (2012). A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury. Health Psychology, 31(6), 767–776. https://doi.org/10.1037/a0028440
   Web of Science ®Google Scholar
• Wade, S., Wolfe, C., Brown, T., & Pestian, J. (2005). Can a Web-based family problem-solving intervention work for children with traumatic brain injury? Rehabilitation Psychology, 50(4), 337–345. https://doi.org/10.1037/0090-5550.50.4.337
   Web of Science ®Google Scholar
• Wade, S., Wolfe, C., & Pestian, J. (2004). A Web-based family problem-solving intervention for families of children with traumatic brain injury. Behavior Research Methods, Instruments, & Computers, 36(2), 261–269. https://doi.org/10.3758/BF03195572
   PubMedGoogle Scholar
• Witt, M., Stokes, T., Parsonson, B., & Dudding, C. (2018). Effect of distance caregiver coaching on functional skills of a child with traumatic brain injury. Brain Injury, 32(7), 894–899. https://doi.org/10.1080/02699052.2018.1466365
   PubMed Web of Science ®Google Scholar
• Woods, D., Catroppa, C., & Anderson, V. (2008). Dealing with a head injury in the family (ABI booklet). Gill Miller Press.
   Google Scholar
• Woods, D., Catroppa, C., Giallo, R., Matthews, J., & Anderson, V. (2012). Feasibility and consumer satisfaction ratings following an intervention for families who have a child with acquired brain injury. NeuroRehabilitation, 30(3), 189–198. https://doi.org/10.3233/NRE-2012-0744
   PubMed Web of Science ®Google Scholar
• Woolf, C., Muscara, F., Anderson, V., & McCarthy, M. (2016). Early traumatic stress responses in parents following a serious illness in their child: A systematic review. Journal of Clinical Psychology in Medical Settings, 23(1), 53–66. https://doi.org/10.1007/s10880-015-9430-y
   PubMed Web of Science ®Google Scholar
• Yeates, K., Taylor, G., Drotar, D., Wade, S., Klein, S., Stancin, T., & Schatschneider, C. (1997). Preinjury family environment as a determinant of recovery from traumatic brain injuries in school-age children. Journal of the International Neuropsychological Society, 3, 617–630. https://s3.amazonaws.com/academia.edu.documents/41512364/Preinjury_family_environment_as_a_determ20160124-25405-dl2wee.pdf?response-content-disposition=inline%3Bfilename%3DPreinjury_family_environment_as_a_determ.pdf&X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Am
   PubMedGoogle Scholar
• Ylvisaker, M., Adelson, P. D., Braga, L. W., Burnett, S. M., Glang, A., Feeney, T., Moore, W., Rumney, P., & Todis, B. (2005). Rehabilitation and ongoing support after pediatric TBI: Twenty years of progress. Journal of Head Trauma Rehabilitation, 20(1), 95–109. https://doi.org/10.1097/00001199-200501000-00009
   PubMed Web of Science ®Google Scholar