Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l’Enfant (TGE) study

References

• Wilson MH. Traumatic brain injury: an underappreciated public health issue. Lancet Public Health. 2016;1:e44. doi:10.1016/S2468-2667(16)30022-6.
   PubMed Web of Science ®Google Scholar
• Chevignard MP, Brooks N, Truelle J-L. Community integration following severe childhood traumatic brain injury. Curr Opin Neurol. 2010;23:695–700. doi:10.1097/WCO.0b013e328340296f. Cited in; PMID: 20962640.
   PubMed Web of Science ®Google Scholar
• Chevignard M, Kerrouche B, Krasny-Pacini A, Mariller A, Pineau-Chardon E, Notteghem P, Prodhomme J, Le Gall D, Roulin J-L, Fournet N, et al. Ecological assessment of everyday executive functioning at home and at school following childhood traumatic brain injury using the BRIEF questionnaire. J Head Trauma Rehabil. 2017;32:E1–12. doi:10.1097/HTR.0000000000000295. Cited in; PMID: 28195957.
   PubMed Web of Science ®Google Scholar
• Lambregts SA, Smetsers JE, Verhoeven IM, de Kloet AJ, van de Port IG, Ribbers GM, Catsman-Berrevoets CE. 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. Cited in; PMID: 29190153.
   PubMed Web of Science ®Google Scholar
• Kingery KM, Narad ME, Taylor HG, Yeates KO, Stancin T, Wade SL. Do children who sustain traumatic brain injury in early childhood need and receive academic services 7 years after injury? J Dev Behav Pediatr. 2017;38:728–35. doi:10.1097/DBP.0000000000000489. Cited in; PMID: 28953005.
   PubMed Web of Science ®Google Scholar
• Dantas KO, Neves R da F, Ribeiro KSQS, Brito GEG de, Batista M do C. Repercussões do nascimento e do cuidado de crianças com deficiência múltipla na família: uma metassíntese qualitativa. Cad Saude Publica. 2019;35(6):e00157918. doi: 10.1590/0102-311X00157918. Cited in; PMID: 31291429.
   PubMedGoogle Scholar
• Rashid M, Goez HR, Mabood N, Damanhoury S, Yager JY, Joyce AS, Newton AS. The impact of pediatric traumatic brain injury (TBI) on family functioning: a systematic review. J Pediatr Rehabil Med. 2014;7:241–54. doi:10.3233/PRM-140293. Cited in; PMID: 25260507.
   PubMedGoogle Scholar
• Stancin T, Wade SL, Walz NC, Yeates KO, Taylor HG. Traumatic brain injuries in early childhood: initial impact on the family. J Dev Behav Pediatr. 2008;29:253–61. doi:10.1097/DBP.0b013e31816b6b0f. Cited in; PMID: 18454041.
   PubMed Web of Science ®Google Scholar
• Brown FL, Whittingham K, Boyd R, Sofronoff K. A systematic review of parenting interventions for traumatic brain injury: child and parent outcomes. J Head Trauma Rehabil. 2013;28:349–60. doi:10.1097/HTR.0b013e318245fed5. Cited in; PMID: 22588359.
   PubMed Web of Science ®Google Scholar
• 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;102:110–16. doi:10.1542/peds.102.1.110. Cited in; PMID: 9651422.
   PubMed Web of Science ®Google Scholar
• Aitken ME, McCarthy ML, Slomine BS, Ding R, Durbin DR, Jaffe KM, Paidas CN, Dorsch AM, Christensen JR, Mackenzie EJ, et al. Family burden after traumatic brain injury in children. Pediatrics. 2009;123:199–206. doi:10.1542/peds.2008-0607. Cited: in: PMID: 19117883.
   PubMed Web of Science ®Google Scholar
• Mangeot S, Armstrong K, Colvin AN, Yeates KO, Taylor HG. Long-term executive function deficits in children with traumatic brain injuries: assessment using the Behavior Rating Inventory of Executive Function (BRIEF). Child Neuropsychol. 2002;8:271–84. doi:10.1076/chin.8.4.271.13503. Cited in; PMID: 12759824.
   PubMed Web of Science ®Google Scholar
• Lieshout K, Oates J, Baker A, Unsworth CA, Cameron ID, Schmidt J, Lannin NA. Burden and preparedness amongst informal caregivers of adults with moderate to severe traumatic brain injury. Int J Environ Res Public Health. 2020;17(17):6386. doi: 10.3390/ijerph17176386. Cited in; PMID: 32887272.
   PubMed Web of Science ®Google Scholar
• Stancin T, Wade SL, Walz NC, Yeates KO, Taylor HG. Family adaptation 18 months after traumatic brain injury in early childhood. J Dev Behav Pediatr. 2010;31:317–25. doi:10.1097/DBP.0b013e3181dbaf32. Cited in; PMID: 20431399.
   PubMed Web of Science ®Google Scholar
• Ennis N, Rosenbloom BN, Canzian S, Topolovec-Vranic J. Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: a systematic review. Neuropsychol Rehabil. 2013;23:1–18. doi:10.1080/09602011.2012.712871. Cited in; PMID: 22897335.
   PubMed Web of Science ®Google Scholar
• Bayen E, Pradat-Diehl P, Jourdan C, Ghout I, Bosserelle V, Azerad S, Weiss J-J, Joël M-E, Aegerter P, Azouvi P, et al. Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma Rehabil. 2013;28:408–18. doi:10.1097/HTR.0b013e31825413cf. Cited in; PMID: 22691963.
   PubMed Web of Science ®Google Scholar
• Bayen E, Jourdan C, Ghout I, Darnoux E, Azerad S, Vallat-Azouvi C, Weiss J-J, Aegerter P, Pradat-Diehl P, Joël M-E, et al. Objective and subjective burden of informal caregivers 4 years after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma Rehabil. 2016;31:E59–67. doi:10.1097/HTR.0000000000000079. Cited in; PMID: 24992640.
   PubMed Web of Science ®Google Scholar
• Soberg HL, Finset A, Roise O, Bautz-Holter E. The trajectory of physical and mental health from injury to 5 years after multiple trauma: a prospective, longitudinal cohort study. Arch Phys Med Rehabil. 2012;93:765–74. doi:10.1016/j.apmr.2011.08.050. Cited in; PMID: 22459698.
   PubMed Web of Science ®Google Scholar
• Man DWK. Family caregivers’ reactions and coping for persons with brain injury. Brain Injury. 2002;16(12):1025–37. doi: 10.1080/0269905021000010087. Cited in; PMID: 12487717.
   PubMed Web of Science ®Google Scholar
• Ergh TC, Hanks RA, Rapport LJ, Coleman RD. Social support moderates caregiver life satisfaction following traumatic brain injury. J Clin Exp Neuropsychol. 2003;25:1090–101. doi:10.1076/jcen.25.8.1090.16735. Cited in; PMID: 14566583.
   PubMed Web of Science ®Google Scholar
• Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649–55. doi:10.1093/geront/20.6.649. Cited in; PMID: 7203086.
   PubMed Web of Science ®Google Scholar
• Soo C, Tate RL, Anderson V, Waugh M-C. Assessing care and support needs for children with acquired brain injury: normative data for the Paediatric care and needs scale (PCANS). Brain Impairment. 2010;11:183–96. doi:10.1375/brim.11.2.183.
   Web of Science ®Google Scholar
• Tate RL. Assessing support needs for people with traumatic brain injury: the care and needs scale (CANS). Brain Inj. 2004;18:445–60. doi:10.1080/02699050310001641183.
   PubMed Web of Science ®Google Scholar
• Wilson JTL, Pettigrew LEL, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and the extended Glasgow Outcome Scale: guidelines for their use. J Neurotrauma. 1998;15:573–85. doi:10.1089/neu.1998.15.573.
   PubMed Web of Science ®Google Scholar
• Beers SR, Wisniewski SR, Garcia-Filion P, Tian Y, Hahner T, Berger RP, Bell MJ, Adelson PD. Validity of a pediatric version of the Glasgow outcome scale–extended. J Neurotrauma. 2012;29:1126–39. doi:10.1089/neu.2011.2272.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Dellatolas G, Watier L, Chevignard M. Participation seven years after severe childhood traumatic brain injury. Disabil Rehabil. 2019;42(17):2402–11. doi: 10.1080/09638288.2019.1594398. Cited in; PMID: 30950661.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Dellatolas G, Watier L, Chevignard M. Self- and parent-reported fatigue 7 years after severe childhood traumatic brain injury: results of the traumatisme grave de l’Enfant prospective longitudinal study. Journal Of Head Trauma Rehabilitation. 2019;35(2):104–16. doi: 10.1097/HTR.0000000000000502. Cited in; PMID: 31246880.
   Web of Science ®Google Scholar
• Câmara-Costa H, Opatowski M, Francillette L, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G, Chevignard M. Self- and parent-reported quality of life 7 years after severe childhood traumatic brain injury in the traumatisme grave de l’Enfant cohort: associations with objective and subjective factors and outcomes. Qual Life Res. 2020;29:515–28. doi:10.1007/s11136-019-02305-7. Cited in; PMID: 31549364.
   PubMed Web of Science ®Google Scholar
• Le Fur C, Câmara-Costa H, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G, et al. Executive functions and attention 7 years after severe childhood traumatic brain injury: results of the traumatisme grave de l’Enfant (TGE) cohort. Ann Phys Rehabil Med. 2020;63:270–79.
   PubMed Web of Science ®Google Scholar
• Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O’Donnell M, Rosenbaum P. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 2004;114(2):e182–191. doi: 10.1542/peds.114.2.e182. Cited in; PMID: 15286255.
   PubMed Web of Science ®Google Scholar
• Rankin ED, Haut MW, Keefover RW, Franzen MD. The establishment of clinical cutoffs in measuring caregiver burden in dementia. Gerontologist. 1994;34:828–32. doi:10.1093/geront/34.6.828. Cited in; PMID: 7843613.
   PubMed Web of Science ®Google Scholar
• Siegert R, Jackson D, Tennant A, Turner-Stokes L. Factor analysis and Rasch analysis of the Zarit Burden Interview for acquired brain injury carer research. J Rehabil Med. 2010;42:302–09. doi:10.2340/16501977-0511.
   PubMed Web of Science ®Google Scholar
• Ware J, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33. doi: 10.1097/00005650-199603000-00003. Cited in; PMID: 8628042.
   PubMed Web of Science ®Google Scholar
• Speranza M, Guénolé F, Revah-Levy A, Egler P-J, Negadi F, Falissard B, Baleyte JM. The French version of the family assessment device. Can J Psychiatry. 2012;57(9):570–77. doi:10.1177/070674371205700908.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Bayen E, Francillette L, Toure H, Meyer P, Laurence W, Dellatolas G, Chevignard M. Parental report of levels of care and needs 7-years after severe childhood traumatic brain injury: results of the traumatisme grave de l’Enfant (TGE) cohort study. Appl Neuropsychol Child. 2022;1–13. doi:10.1080/21622965.2022.2142792. Cited in; PMID: 36353798.
   PubMed Web of Science ®Google Scholar
• Teasdale G, Jennett B. Assessment of coma and impaired consciousness. A practical scale. Lancet. 1974;2(7872):81–84. doi: 10.1016/s0140-6736(74)91639-0. Cited in; PMID: 4136544.
   PubMed Web of Science ®Google Scholar
• Tepas JJ, Mollitt DL, Talbert JL, Bryant M. The pediatric trauma score as a predictor of injury severity in the injured child. J Pediatr Surg. 1987;22:14–18. doi:10.1016/s0022-3468(87)80006-4. Cited in; PMID: 3102714.
   PubMed Web of Science ®Google Scholar
• Baker SP, O’Neill B, Haddon W, Long WB. The injury severity score: a method for describing patients with multiple injuries and evaluating emergency care. J Trauma. 1974;14(3):187–96. doi: 10.1097/00005373-197403000-00001. Cited in; PMID: 4814394
   PubMed Web of Science ®Google Scholar
• Wechsler D. Échelle d’intelligence de Wechsler pour enfants: WISC-IV. Paris, France: Les Éditions du Centre de Psychologie Appliquée; 2005.
   Google Scholar
• Wechsler D. Échelle d’intelligence de Wechsler pour adultes WAIS-IV. Paris: Les Éditions du Centre de Psychologie Appliquée; 2008.
   Google Scholar
• Gioia GA, Isquith PK, Guy SC, Kenworthy L. BRIEF: inventaire d’évaluation comportementale des fonctions exécutives [BRIEF: behavior rating inventory of executive function]. Roy A, Fournet N, Legall D, Roulin JL, editors. Paris, France: Hogrefe; 2014.
   Google Scholar
• Roth RM, Gioia GA, Isquith PK. BRIEF-A: inventaire d’évaluation comportementale des fonctions exécutives - version adulte [BRIEF-A: behavior rating inventory of executive function - adult version]. Besnard J, Fournet N, Lancelot D, Le Gall D, Roy A, editors. Paris, France: Hogrefe; 2015.
   Google Scholar
• Achenbach TM, Rescorla LA. Manual for the ASEBA School-age forms & profiles. Burlington, VT: University of Vermont: Research Center for Children, Youth, & Families; 2001.
   Google Scholar
• Achenbach TM, Rescorla LA. Manual for the ASEBA adult forms & profiles. Burlington, VT: University of Vermont: Research Center for Children, Youth, & Families; 2003.
   Google Scholar
• Varni JW, Seid M, Rode CA. The PedsQL™: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–39. doi: 10.1097/00005650-199902000-00003. Cited in; PMID: 10024117.
   PubMed Web of Science ®Google Scholar
• Varni JW, Limbers CA. The pedsQL™ multidimensional fatigue scale in young adults: feasibility, reliability and validity in a university student population. Qual Life Res. 2008;17(1):105–14. doi: 10.1007/s11136-007-9282-5. Cited in; PMID: 18027106.
   PubMed Web of Science ®Google Scholar
• Bedell GM, Bedell. 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. 10.3233/NRE-2004-19303. Cited in; PMID: 15502253.
   PubMed Web of Science ®Google Scholar
• Bedell G, Bedell. Further validation of the child and adolescent scale of participation (CASP). Dev Neurorehabil. 2009;12(5):342–51. doi:10.3109/17518420903087277.
   PubMed Web of Science ®Google Scholar
• von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61:344–49. doi:10.1016/j.jclinepi.2007.11.008.
   PubMed Web of Science ®Google Scholar
• Neumane S, Câmara-Costa H, Francillette L, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G, Chevignard M. Functional status 1 year after severe childhood traumatic brain injury predicts 7-year outcome: results of the TGE study. Ann Phys Rehabil Med. 2022;65:101627. doi:10.1016/j.rehab.2021.101627. Cited in; PMID: 34986401.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Viot S, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G, et al. Memory functioning 7 years after severe childhood traumatic brain injury: results of the traumatisme grave de l’Enfant study. J Neuropsychol. 2022;16:183–210. doi:10.1111/jnp.12247. Cited in; PMID: 33856121.
   PubMed Web of Science ®Google Scholar
• Neumane S, Câmara-Costa H, Francillette L, Araujo M, Toure H, Brugel D, Laurent-Vannier A, Ewing-Cobbs L, Meyer P, Dellatolas G, et al. Functional outcome after severe childhood traumatic brain injury: results of the TGE prospective longitudinal study. Ann Phys Rehabil Med. 2021;64:101375.
   PubMed Web of Science ®Google Scholar
• Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil. 2017;31(1):45–60. doi: 10.1177/0269215516639357. Cited in; PMID: 27009058.
   PubMed Web of Science ®Google Scholar
• Ballesteros J, Santos B, González-Fraile E, Muñoz-Hermoso P, Domínguez-Panchón AI, Martín-Carrasco M. Unidimensional 12-item zarit caregiver burden interview for the assessment of dementia caregivers’ burden obtained by item response theory. Value Health. 2012;15(8):1141–47. doi: 10.1016/j.jval.2012.07.005. Cited in; PMID: 23244818.
   PubMed Web of Science ®Google Scholar
• Hawley CA, Ward AB, Magnay AR, Long J. Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Inj. 2003;17:1–23. doi:10.1080/0269905021000010096. Cited in; PMID: 12519644.
   PubMed Web of Science ®Google Scholar
• Yığman F, Aykın Yığman Z, Ünlü Akyüz E. Investigation of the relationship between disease severity, caregiver burden and emotional expression in caregivers of children with cerebral palsy. Ir J Med Sci. 2020;189(4):1413–19. doi: 10.1007/s11845-020-02214-6. Cited in; PMID: 32185751.
   PubMed Web of Science ®Google Scholar
• Ryan NP, van Bijnen L, Catroppa C, Beauchamp MH, Crossley L, Hearps S, Anderson V. Longitudinal outcome and recovery of social problems after pediatric traumatic brain injury (TBI): contribution of brain insult and family environment. Int J Dev Neurosci. 2016;49:23–30. doi:10.1016/j.ijdevneu.2015.12.004. Cited in; PMID: 26739435.
   PubMed Web of Science ®Google Scholar
• Law E, Fisher E, Eccleston C, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2019;3(3):CD009660. doi: 10.1002/14651858.CD009660.pub4. Cited in; PMID: 30883665.
   PubMedGoogle Scholar
• Marsh NV, Kersel DA, Havill JA, Sleigh JW. Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol. 2002;24(4):434–47. doi: 10.1076/jcen.24.4.434.1030. Cited in; PMID: 12187457.
   PubMed Web of Science ®Google Scholar
• Weeks LE, Nilsson T, Bryanton O, Kozma A. Current and future concerns of older parents of sons and daughters with intellectual disabilities. J Policy Pract Intellect Disabil. 2009;6:180–88. doi:10.1111/j.1741-1130.2009.00222.x.
   Web of Science ®Google Scholar
• Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311:1052–60. doi:10.1001/jama.2014.304. Cited in; PMID: 24618967.
   PubMed Web of Science ®Google Scholar
• Anderson VA. Identifying factors contributing to child and family outcome 30 months after traumatic brain injury in children. J Neurol Neurosurg Psychiatry. 2005;76:401–08. doi:10.1136/jnnp.2003.019174.
   PubMed Web of Science ®Google Scholar
• Rivara JB, Jaffe KM, Fay GC, Polissar NL, Martin KM, Shurtleff HA, Liao S. Family functioning and injury severity as predictors of child functioning one year following traumatic brain injury. Arch Phys Med Rehabil. 1993;74:1047–55. doi:10.1016/0003-9993(93)90060-n. Cited in; PMID: 8215855.
   PubMed Web of Science ®Google Scholar
• 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. Cited in; PMID: 8702368.
   PubMed Web of Science ®Google Scholar
• Wade SL, Walz NC, Cassedy A, Taylor HG, Stancin T, Yeates KO, Arango-Lasprilla JC, Kreutzer J. Caregiver functioning following early childhood TBI: do moms and dads respond differently? NeuroRehabilitation. 2010;27(1):63–72. doi: 10.3233/NRE-2010-0581. Cited in; PMID: 20634601.
   PubMed Web of Science ®Google Scholar
• 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;41:303–13. doi:10.1111/cch.12173. Cited in; PMID: 25039833.
   PubMed Web of Science ®Google Scholar
• De Bock F, Bosle C, Graef C, Oepen J, Philippi H, Urschitz MS. Measuring social participation in children with chronic health conditions: validation and reference values of the child and adolescent scale of participation (CASP) in the German context. BMC Pediatr. 2019;19:125. doi:10.1186/s12887-019-1495-6. Cited in; PMID: 31018847.
   PubMed Web of Science ®Google Scholar
• Varni JW, Limbers CA. The PedsQL™ 4.0 generic core scales young adult version. J Health Psychol. 2009;14(4):611–22. doi: 10.1177/1359105309103580. Cited in; PMID: 19383661.
   PubMed Web of Science ®Google Scholar
• Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL™ in pediatric cancer. Cancer. 2002;94(7):2090–106. doi: 10.1002/cncr.10428. Cited in; PMID: 11932914.
   PubMed Web of Science ®Google Scholar