Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment

References

• Giacino JT, Ashwal S, Childs N, Cranford R, Jennett B, Katz DI, Kelly JP, Rosenberg JH, Whyte J, Zafonte RD, et al. The minimally conscious state: Definition and diagnostic criteria. Neurology. 2002;58(3):349–353. doi:10.1212/WNL.58.3.349.
   PubMed Web of Science ®Google Scholar
• Houston AL, Wilson NS, MCHJ M, Lodh R, Oddy JR. Interventions to improve outcomes in children and young people with unresponsive wakefulness syndrome following acquired brain injury: a systematic review. Eur J Paediatr Neuro. 2020;25:40–51. doi:10.1016/j.ejpn.2020.01.015.
   PubMed Web of Science ®Google Scholar
• LaRovere KL, De Souza BJ, Szuch E, Urion DK, Vitali SH, Zhang B, Graham RJ, Geva A, Tasker RC. Clinical characteristics and outcomes of children with acute catastrophic brain injury: a 13-year retrospective cohort study. Neurocrit Care. 2021;36(3):715–26. doi:10.1007/s12028-021-01408-9.
   PubMed Web of Science ®Google Scholar
• Rodgin S, Suskauer SJ, Chen J, Katz E, Davis KC, Slomine BS. Very long-term outcomes in children admitted in a disorder of consciousness after severe traumatic brain injury. Arch Phys Med Rehab. 2021;102(8):1507–13. doi:10.1016/j.apmr.2021.01.084.
   PubMed Web of Science ®Google Scholar
• Wade SL, Taylor HG, Drotar D, Stancin T, Yeates KO. Childhood traumatic brain injury: initial impact on the family. J Learn Disabil. 1996;29(6):652–661. doi:10.1177/002221949602900609.
   PubMed Web of Science ®Google Scholar
• Wade SL, Taylor HG, Yeates KO, Drotar D, Stancin T, Minich NM, Schluchter M. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31(10):1072–83. doi:10.1093/jpepsy/jsj077.
   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(1):199–206. doi:10.1542/peds.2008-0607.
   PubMed Web of Science ®Google Scholar
• Meert KL, Slomine BS, Christensen JR, Telford R, Holubkov R, Dean JM, Moler FW. Family burden after out-of-hospital cardiac arrest in children. Pediatr Crit Care Me. 2016;17(6):498–507. doi:10.1097/PCC.0000000000000726.
   PubMed Web of Science ®Google Scholar
• Meert K, Slomine BS, Christensen JR, Telford R, Holubkov R, Dean JM, Moler FW. Burden of caregiving after a child’s in-hospital cardiac arrest. Resuscitation. 2018;127:44–50. doi:10.1016/j.resuscitation.2018.03.034.
   PubMed Web of Science ®Google Scholar
• Allonsius F, De Kloet AJ, Van Markus-Doornbosch F, Meesters JJL, Kromme CH, Vliet Vlieland TPM, Van Der Holst M. Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting. Brain Inj. 2021;35(5):563–73. doi:10.1080/02699052.2021.1891287.
   PubMed Web of Science ®Google Scholar
• de Kloet AJ, Lambregts SAM, Berger MAM, van Markus F, Wolterbeek R, Vliet Vlieland TPM. Family impact of acquired brain injury in children and youth. J Dev Behav Pediatr. 2015;36(5):342–51. doi:10.1097/DBP.0000000000000169.
   PubMed Web of Science ®Google Scholar
• Bemister TB, Brooks BL, Dyck RH, Kirton A. Predictors of caregiver depression and family functioning after perinatal stroke. BMC Pediatr. 2015;15(1):1–11. doi:10.1186/s12887-015-0397-5.
   PubMedGoogle Scholar
• 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(1):1–6. doi:10.1186/1477-7525-2-55.
   PubMedGoogle Scholar
• Panepinto JA, Hoffmann RG, Pajewski NM. A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease. Health Qual Life Outcomes. 2009;7(1):32. doi:10.1186/1477-7525-7-32.
   PubMedGoogle Scholar
• Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock-BarZiv SM. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatr Transplant. 2010;14(2):249–56. doi:10.1111/j.1399-3046.2009.01214.x.
   PubMed Web of Science ®Google Scholar
• Hsieh RL, Huang HY, Lin MI, Wu CW, Lee WC. Quality of life, health satisfaction and family impact on caregivers of children with developmental delays. Child Care Health Dev. 2009;35(2):243–49. doi:10.1111/j.1365-2214.2008.00927.x.
   PubMed Web of Science ®Google Scholar
• Jastrowski Mano KE, Khan KA, Ladwig RJ, Weisman SJ. The impact of pediatric chronic pain on parents’ health-related quality of life and family functioning: reliability and validity of the PedsQL 4.0 family impact module. J Pediatr Psychol. 2011;36(5):517–27. doi:10.1093/jpepsy/jsp099.
   PubMed Web of Science ®Google Scholar
• Kunz JH, Greenley RN, Howard M. Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease. Qual Life Res. 2011;20:1197–204. doi:10.1007/s11136-011-9853-3.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Scarpelli AC, Paiva SM, Pordeus IA, Varni JW, Viegas CM, Allison PJ. The pediatric quality of life InventoryTM (PedsQLTM) family impact module: reliability and validity of the Brazilian version. Health Qual Life Outcomes. 2008;6(1):35. doi:10.1186/1477-7525-6-35.
   PubMedGoogle Scholar
• Medrano GR, Berlin KS, Hobart Davies W. Utility of the PedsQLTM 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.
   PubMed Web of Science ®Google Scholar
• Sparrow S, Cicchetti D, Saulnier C. Vineland adaptive behavior scales. 3rd ed. (Vineland-3). San Antonio, TX: Pearson; 2016.
   Google Scholar
• Ludwig NN, Suskauer SJ, Rodgin S, Chen J, Borda A, Jones K, Lahey S, Slomine BS. Outcome measurement in children with a history of disorders of consciousness after severe brain injury: telephone administration of the vineland adaptive behavior scales, third edition, and glasgow outcome scale-extended pediatric revision. Pediatr Crit Care Me. 2023;24(2):e76–83. doi:10.1097/PCC.0000000000003121.
   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(6):1126–1139. doi:10.1089/neu.2011.2272.
   PubMed Web of Science ®Google Scholar
• Kosiorek A, Donofrio MT, Zurakowski D, Reitz JG, Tague L, Murnick J, Axt-Fliedner R, Limperopoulos C, Yerebakan C, Carpenter JL. Predictors of neurological outcome following infant cardiac surgery without deep hypothermic circulatory arrest. Pediatr Cardiol. 2022;43(1):62–73. doi:10.1007/s00246-021-02693-z.
   PubMed Web of Science ®Google Scholar
• Gaínza‐Lein M, Aguilar CB, Piantino J, Champman KE, Fernandez IS, Amengual-Gual M, Anderson A, Appavu B, Arya R, Brenton JN, et al. Factors associated with long-term outcomes in pediatric refractory status epilepticus. Epilepsia. 2021;62(9):2190–204. doi:10.1111/epi.16984.
   PubMed Web of Science ®Google Scholar
• Kind AJH, Buckingham WR. Making neighborhood-disadvantage metrics accessible—the neighborhood atlas. N Engl J Med. 2018;378(26):2456. doi:10.1056/NEJMp1802313.
   PubMed Web of Science ®Google Scholar
• Takirambudde S, Ruffolo LI, Wakeman DS, Dale BS, Arca MJ, Wilson NA. Social determinants of health are associated with postoperative outcomes in children with complicated appendicitis. J Surg Res. 2022;279:692–701. doi:10.1016/j.jss.2022.06.059.
   PubMed Web of Science ®Google Scholar
• Hu J, Kind AJH, Nerenz D. Area deprivation index predicts readmission risk at an urban teaching hospital. Am J Med Qual. 2018;33(5):493–501. doi:10.1177/1062860617753063.
   PubMed Web of Science ®Google Scholar
• Dunn OJ. Multiple comparisons using rank sums. Technometrics. 1964;6(3):241–52s. doi:10.1080/00401706.1964.10490181.
   Web of Science ®Google Scholar
• Rozensztrauch A, Kołtuniuk A. The quality of life of children with epilepsy and the impact of the disease on the family functioning. Int J Env Res Pub He. 2022;19:2277. doi:10.3390/ijerph19042277.
   PubMedGoogle Scholar
• Yamada T, Hatt SR, Leske DA, Holmes JM. Health-related quality of life in parents of children with intermittent exotropia. J Am Assoc Pediatr Ophthalmol Strabismus. 2011;15(2):135–39. doi:10.1016/j.jaapos.2010.11.020.
   Google Scholar
• Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004;4(1):1. doi:10.1186/1471-2431-4-1.
   PubMedGoogle Scholar
• Sloper P. Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol. 2000;25(2):79–91. doi:10.1093/jpepsy/25.2.79.
   PubMed Web of Science ®Google Scholar