2,025
Views
7
CrossRef citations to date
0
Altmetric
Research Article

Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting

, PTORCID Icon, , PhDORCID Icon, , MD, PhDORCID Icon, , PT, PhDORCID Icon, , Msc, prof., , MD, PhDORCID Icon & , PT, PhDORCID Icon show all
Pages 563-573 | Received 04 May 2020, Accepted 12 Feb 2021, Published online: 18 Mar 2021

References

  • Greenwald BD, Burnett DM, Miller MA.Congenital and acquired brain injury. 1. brain injury: epidemiology and pathophysiology. Arch Phys Med Rehabil. 2003;84(3 Suppl 1):S3–7.
  • De Kloet AJ, Hilberink SR, Roebroeck ME, Catsman-Berrevoets CE, Peeters E, Lambregts SA.Youth with acquired brain injury in The Netherlands: a multi-centre study. Brain Inj. 2013;27(7–8):843–49. doi:10.3109/02699052.2013.775496.
  • Theadom A, Starkey N, Barker-Collo S, Jones K, Ameratunga S, Feigin V.Population-based cohort study of the impacts of mild traumatic brain injury in adults four years post-injury. PLoS One. 2018;13(1):e0191655. doi:10.1371/journal.pone.0191655.
  • Rivara FP, Vavilala MS, Durbin D, Temkin N, Wang J, O’Connor SS.Persistence of disability 24 to 36 months after pediatric traumatic brain injury: a cohort study. J Neurotrauma. 2012;29(15):2499–504. doi:10.1089/neu.2012.2434.
  • Anderson V, Godfrey C, Rosenfeld JV, Catroppa C.10 years outcome from childhood traumatic brain injury. Int J Dev Neurosci. 2012;30(3):217–24. doi:10.1016/j.ijdevneu.2011.09.008.
  • Hawley CA.Behaviour and school performance after brain injury. Brain Inj. 2004;18(7):645–59. doi:10.1080/02699050310001646189.
  • Catroppa C, Crossley L, Hearps SJ, Yeates KO, Beauchamp M, Rogers K.Social and behavioral outcomes: pre-injury to six months following childhood traumatic brain injury. J Neurotrauma. 2015;32(2):109–15. doi:10.1089/neu.2013.3276.
  • Lambregts SAM, Van Markus-Doornbosch F, Catsman-Berrevoets CE, Berger MAM, De Kloet AJ, Hilberink SR.Neurological outcome in children and youth with acquired brain injury 2-year post-injury. Dev Neurorehabil. 2018;21(7):465–74. doi:10.1080/17518423.2018.1460770.
  • Van Markus-doornbosch F, Van Der Holst M, Aj K de, Vliet VTPM, Fatigue MJJL. Participation and quality of life in adolescents and young adults with acquired brain injury in an outpatient rehabilitation cohort. Dev Neurorehabil. 2019;1–8. 2020 Jul;23(5):328-335.doi: 10.1080/17518423.2019.1692948.Epub 2019 Nov 20.
  • Barlow KM, Crawford S, Stevenson A, Sandhu SS, Belanger F, Dewey D.Epidemiology of postconcussion syndrome in pediatric mild traumatic brain injury. Pediatrics. 2010;126(2):e374–81. doi:10.1542/peds.2009-0925.
  • Keret A, Bennett-Back O, Rosenthal G, Gilboa T, Shweiki M, Shoshan Y.Posttraumatic epilepsy: long-term follow-up of children with mild traumatic brain injury. J Neurosurg Pediatr. 2017;20(1):64–70. doi:10.3171/2017.2.PEDS16585.
  • Lambregts SAM, Smetsers JEM, Verhoeven I, De Kloet AJ, Igl DP van, Ribbers GM.Cognitive function and participation in children and youth with mild traumatic brain injury two years after injury. Brain Inj. 2018;32(2):230–41. doi:10.1080/02699052.2017.1406990.
  • Di Battista A, Soo C, Catroppa C, Anderson V.Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis. J Neurotrauma. 2012;29(9):1717–27. doi:10.1089/neu.2011.2157.
  • Anderson V, Brown S, Newitt H, Hoile H.Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. J Head Trauma Rehabil. 2009;24(5):303–12. doi:10.1097/HTR.0b013e3181ada830.
  • Rashid M, Goez HR, Mabood N, Damanhoury S, Yager JY, Joyce AS.The impact of pediatric traumatic brain injury (TBI) on family functioning: a systematic review. J Pediatr Rehabil Med. 2014;7(3):241–54. doi:10.3233/PRM-140293.
  • Wade SL, Gerry Taylor H, Yeates KO, Drotar D, Stancin T, Minich NM.Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31(10):1072–83. doi:10.1093/jpepsy/jsj077.
  • Varni JW, Burwinkle TM, Seid M.The pedsQL as a pediatric patient-reported outcome: reliability and validity of the pedsQL measurement model in 25,000 children. Expert Rev Pharmacoecon Outcomes Res. 2005;5(6):705–19. doi:10.1586/14737167.5.6.705.
  • Bemister TB, Brooks BL, Dyck RH, Kirton A.Parent and family impact of raising a child with perinatal stroke. BMC Pediatr. 2014;14(1):182. doi:10.1186/1471-2431-14-182.
  • De Kloet AJ, Lambregts SA, Berger MA, Van Markus F, Wolterbeek R, Vliet Vlieland TP.Family impact of acquired brain injury in children and youth. J Dev Behav Pediatr. 2015;36(5):342–51. doi:10.1097/DBP.0000000000000169.
  • Kirk S, Fallon D, Fraser C, Robinson G, Vassallo G.Supporting parents following childhood traumatic brain injury: a qualitative study to examine information and emotional support needs across key care transitions. Child Care Health Dev. 2015;41(2):303–13. doi:10.1111/cch.12173.
  • Medrano GR, Berlin KS, Hobart Davies W.Utility of the pedsQL family impact module: assessing the psychometric properties in a community sample. Qual Life Res. 2013;22(10):2899–907. doi:10.1007/s11136-013-0422-9.
  • Hansson H, Kjaergaard H, Johansen C, Hallstrom I, Christensen J, Madsen M.Hospital-based home care for children with cancer: feasibility and psychosocial impact on children and their families. Pediatr Blood Cancer. 2013;60(5):865–72. doi:10.1002/pbc.24474.
  • Hileli I, Weyl Ben Arush M, Hakim F, Postovsky S.Association between religious and socio-economic background of parents of children with solid tumors and DNR orders. Pediatr Blood Cancer. 2014;61(2):265–68. doi:10.1002/pbc.24712.
  • Amram O, Schuurman N, Pike I, Yanchar NL, Friger M, McBeth PB.Socio economic status and traumatic brain injury amongst pediatric populations: a spatial analysis in greater vancouver. Int J Environ Res Public Health. 2015;12(12):15594–604. doi:10.3390/ijerph121215009.
  • Brown FL, Whittingham K, Sofronoff K, Boyd RN.Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain Inj. 2013;27(13–14):1570–82. doi:10.3109/02699052.2013.841996.
  • Hawley CA, Ward AB, Magnay AR, Long J.Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Inj. 2003;17(1):1–23. doi:10.1080/0269905021000010096.
  • Limond J, Dorris L, McMillan TM.Quality of life in children with acquired brain injury: parent perspectives 1-5 years after injury. Brain Inj. 2009;23(7):617–22. doi:10.1080/02699050902997870.
  • Jl M, Tz K, O’Toole K, Henrich C, Fj F.Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury. J Int Neuropsychol Soc. 2012;18(2):343–50. doi:10.1017/S1355617711001792.
  • Qadeer A, Khalid U, Amin M, Murtaza S, Khaliq MF, Caregiver’s SM.Burden of the patients with traumatic brain injury. Cureus. 2017;9(8):e1590.
  • Rivara JM, Jaffe KM, Polissar NL, Fay GC, Liao S, Martin KM.Predictors of family functioning and change 3 years after traumatic brain injury in children. Arch Phys Med Rehabil. 1996;77(8):754–64. doi:10.1016/S0003-9993(96)90253-1.
  • Limbers CA, Ripperger-Suhler J, Boutton K, Ransom D, Varni JW.A comparative analysis of health-related quality of life and family impact between children with ADHD treated in a general pediatric clinic and a psychiatric clinic utilizing the pedsQL. J Atten Disord. 2011;15(5):392–402. doi:10.1177/1087054709356191.
  • Wade SL, Taylor HG, Drotar D, Stancin T, Yeates KO.Family burden and adaptation during the initial year after traumatic brain injury in children. Pediatrics. 1998;102(1 Pt 1):110–16. doi:10.1542/peds.102.1.110.
  • Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The pedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:55. doi:10.1186/1477-7525-2-55.
  • Braga LW, Da Paz AC, Ylvisaker M.Direct clinician-delivered versus indirect family-supported rehabilitation of children with traumatic brain injury: a randomized controlled trial. Brain Inj. 2005;19(10):819–31. doi:10.1080/02699050500110165.
  • Fisher A, Bellon M, Lawn S, Lennon S, Sohlberg M.Family-directed approach to brain injury (FAB) model: a preliminary framework to guide family-directed intervention for individuals with brain injury. Disabil Rehabil. 2019;41(7):854–60. doi:10.1080/09638288.2017.1407966.
  • Cuschieri S.The STROBE guidelines. Saudi J Anaesth. 2019;13(Suppl 1):S31–S4. doi:10.4103/sja.SJA_543_18.
  • Glasgow Coma Scale Shobhit Jain1, Lindsay M. Iverson. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan. 2020 Jun 23. PMID: 30020670 Bookshelf ID: NBK513298 https://www.ncbi.nlm.nih.gov/books/NBK513298/.
  • McCarthy M, MacKenzie E, Durbin D, Aitken M, Jaffe K, Paidas C. The pediatric quality of life inventory: an evaluation of its reliability and validity for children with traumatic brain injury. Arch Phys Med Rehabil. 2005:Oct;86(10):1901–09. doi:10.1016/j.apmr.2005.03.026.
  • Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34. doi:10.1186/1477-7525-3-34.
  • Neuner B, Von Mackensen S, Krumpel A, Manner D, Friefeld S, Nixdorf S.Health-related quality of life in children and adolescents with stroke, self-reports, and parent/proxies reports: cross-sectional investigation. Ann Neurol. 2011;70(1):70–78. doi:10.1002/ana.22381.
  • De Kloet AJ, Berger MA, Bedell GM, Catsman-Berrevoets CE, Van Markus-doornbosch F, Vliet Vlieland TP.Psychometric evaluation of the dutch language version of the child and family follow-up survey. Dev Neurorehabil. 2015;18(6):357–64. doi:10.3109/17518423.2013.850749.
  • Bedell GM.Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation. NeuroRehabilitation. 2004;19(3):191–205. doi:10.3233/NRE-2004-19303.
  • Bartko JJ.The intraclass correlation coefficient as a measure of reliability. Psychol Rep. 1966;19(1):3–11. doi:10.2466/pr0.1966.19.1.3.