Semin Speech Lang 2023; 44(04): 205-216
DOI: 10.1055/s-0043-1770346
Research Article Pediatric

Exploring the Caregiver-Reported Impact of the COVID-19 Pandemic on Children with Traumatic Brain Injury

1   Department of Communication Sciences and Disorders, University of Maine, Orono, Maine
› Author Affiliations

Abstract

The COVID-19 pandemic is expected to have a persistent, negative, and disproportionate impact on children with disabilities. Children with traumatic brain injury (TBI) may be expected to experience a disproportionate impact given the deficits often associated with childhood TBI (e.g., family functioning, fatigue, executive functioning, quality of life). This study aimed to explore the impact of the COVID-19 pandemic on children with TBI and their families, compared to typically developing (TD) children and their families. Thirty caregivers (TBI = 15; TD = 15) completed a series of electronic survey measures. Overall, caregivers reported no negative impact of the COVID-19 pandemic on their family's or child's functioning and association with demographic factors and domains of functioning showed no clear patterns. The findings of this exploratory study support continued longitudinal investigation with larger sample sizes of the provision of supports for all families and children in light of the COVID-19 pandemic. Additional research is needed to understand the effectiveness of targeted services for students with TBI in domains of functioning that are significantly poorer than TD children (e.g., quality of life, executive functioning, fatigue).

Disclosure

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. The author has no financial or nonfinancial conflicts of interest to disclose.




Publication History

Article published online:
16 June 2023

© 2023. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 
  • References

  • Adıbelli D. & Sümen, A. (2020). The effect of the coronavirus (COVID-19) pandemic on health-related quality of life in children. Children and Youth Services Review 119: 105595
  • Aishworiya R. & Kang, Y. Q. (2021). Including children with developmental disabilities in the equation during this COVID-19 Pandemic. Journal of Autism and Developmental Disorders 51 (06) 2155-2158
  • Åkerlund E, Sunnerhagen KS. & Persson, H. C. (2021). Fatigue after acquired brain injury impacts health-related quality of life: an exploratory cohort study. Scientific Reports 11 (01) 22153
  • Allonsius F, De Kloet AJ, Van Markus-Doornbosch F, Meesters JJ. L, Kromme CH, Vliet Vlieland TP. M. & Van Der Holst, M. (2021). Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting. Brain Injury : [BI] 35 (05) 563-573
  • Anderson V, Brown S, Newitt H. & Hoile, H. (2009). Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. The Journal of Head Trauma Rehabilitation 24 (05) 303-312
  • 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 (02) 176-184
  • Arnett AB, Peterson RL, Kirkwood MW, Taylor HG, Stancin T, Brown TM. & Wade, S. L. (2013). Behavioral and cognitive predictors of educational outcomes in pediatric traumatic brain injury. Journal of the International Neuropsychological Society 19 (08) 881-889
  • Bates LC, Zieff G, Stanford K, Moore JB, Kerr ZY, Hanson ED, Barone Gibbs B, Kline CE. & Stoner, L. (2020). COVID-19 impact on behaviors across the 24-hour day in children and adolescents: physical activity, sedentary behavior, and sleep. Children (Basel, Switzerland) 7 (09) 9
  • Boterhoven de Haan KL, Hafekost J, Lawrence D, Sawyer MG, Zubrick SR. (2015). Reliability and validity of a short version of the general functioning subscale of the McMaster Family Assessment Device. Family Process 54 (01) 116-123
  • Bradley RH, Corwyn RF, Caldwell BM, Whiteside-Mansell L, Wasserman GA. & Mink, I. T. (2000). Measuring the home environments of children in early adolescence. Journal of Research on Adolescence 10 (03) 3
  • Bryson WJ. (2021). Long-term health-related quality of life concerns related to the COVID-19 pandemic: a call to action. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 30 (03) 643-645
  • Câmara-Costa H, Opatowski M, Francillette L, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G. & Chevignard, M. (2020). 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. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 29 (02) 515-528
  • Cantor JB, Ashman T, Gordon W, Ginsberg A, Engmann C, Egan M, Spielman L, Dijkers M. & Flanagan, S. (2008). Fatigue after traumatic brain injury and its impact on participation and quality of life. The Journal of Head Trauma Rehabilitation 23 (01) 41-51
  • Chandran R. & Alagesan, J. (2021). Impact of COVID-19 on caregiver burden among parents of differently abled children: a survey. INTI Journal 4: 1-7
  • de Kloet AJ, Lambregts SA. M, Berger MA. M, van Markus F, Wolterbeek R. & Vliet Vlieland, T. P. M. (2015). Family impact of acquired brain injury in children and youth. Journal of Developmental and Behavioral Pediatrics 36 (05) 342-351
  • Du F, He L, Francis MR, Forshaw M, Woolfall K, Lv Q, Shi L. & Hou, Z. (2021). Associations between parent-child relationship, and children's externalizing and internalizing symptoms, and lifestyle behaviors in China during the COVID-19 epidemic. Scientific Reports 11 (01) 23375
  • Durber CM, Yeates KO, Taylor HG, Walz NC, Stancin T. & Wade, S. L. (2017). The family environment predicts long-term academic achievement and classroom behavior following traumatic brain injury in early childhood. Neuropsychology 31 (05) 499-507
  • Durish CL, Yeates KO, Stancin T, Taylor HG, Walz NC. & Wade, S. L. (2018). Home environment as a predictor of long-term executive functioning following early childhood traumatic brain injury. Journal of the International Neuropsychological Society 24 (01) 11-21
  • Ehrler M, Werninger I, Schnider B, Eichelberger DA, Naef N, Disselhoff V, Kretschmar O, Hagmann CF, Latal B. & Wehrle, F. M. (2021). Impact of the COVID-19 pandemic on children with and without risk for neurodevelopmental impairments. Acta Paediatrica (Oslo, Norway) 110 (04) 1281-1288
  • Epstein NB, Baldwin LM. & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy 9 (02) 171-180
  • Fereidouni Z, Kamyab AH, Dehghan A, Khiyali Z, Ziapour A, Mehedi N. & Toghroli, R. (2021). A comparative study on the quality of life and resilience of mothers with disabled and neurotypically developing children in Iran. Heliyon 7 (06) e07285
  • Fong CV. & Iarocci, G. (2020). Child and family outcomes following pandemics: A systematic review and recommendations on COVID-19 policies. Journal of Pediatric Psychology 45 (10) 1124-1143
  • Gayatri M. & Irawaty, D. K. (2022). Family resilience during COVID-19 pandemic: a literature review. The Family Journal (Alexandria, Va.) 30 (02) 132-138
  • Gazica MW, Leto GD. & Irish, A. L. (2022). The effects of unexpected changes to content delivery on student learning outcomes: a psychological contract perspective during the COVID-19 era. Psychology in the Schools 59 (08) 1473-1491
  • Gioia GA, Isquith PK, Guy SC. & Kenworthy, L. (2015). Behavior Rating Inventory of Executive Functioning (2nd ed.). PAR, Inc.
  • Gordijn M, Cremers EM. P, Kaspers GJ. L. & Gemke, R. J. B. J. (2011). Fatigue in children: reliability and validity of the Dutch PedsQL™ Multidimensional Fatigue Scale. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 20 (07) 1103-1108
  • Goverover Y, Kim G, Chen MH, Volebel GT, Rosenfeld M, Botticello A, DeLuca J. & Genova, H. M. (2022). The impact of the COVID-19 pandemic on engagement in activities of daily living in persons with acquired brain injury. Brain Injury : [BI] 36 (02) 183-190
  • Gupta S. & Jawanda, M. K. (2020). The impacts of COVID-19 on children. Acta Paediatrica (Oslo, Norway) 109 (11) 2181-2183
  • Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O'Neal L, McLeod L, Delacqua G, Delacqua F, Kirby J, Duda SN. & The REDCap Consortium. (2019). The REDCap consortium: building an international community of software platform partners. Journal of Biomedical Informatics 95: 103208
  • Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N. & Conde, J. G. (2009). Research electronic data capture (REDCap) – a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics 42 (02) 377-381
  • Houtrow A, Harris D, Molinero A, Levin-Decanini T. & Robichaud, C. (2020). Children with disabilities in the United States and the COVID-19 pandemic. Journal of Pediatric Rehabilitation Medicine 13: 415-424
  • Hypher R, Andersson S, Finnanger TG, Brandt AE, Hoorelbeke K, Lie HC, Barder HE, Larsen SM, Risnes K, Rø TB. & Stubberud, J. (2021). Fatigue following pediatric acquired brain injury: Interplay with associated factors in a clinical trial population compared to healthy controls. Neuropsychology 35 (06) 609-621
  • JASP Team. (2023). JASP (Version 0.17)[Computer software]
  • Jastrowski Mano KE, Khan KA, Ladwig RJ. & Weisman, S. J. (2011). 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. Journal of Pediatric Psychology 36 (05) 517-527
  • Kurowski BG, Taylor HG, Yeates KO, Walz NC, Stancin T. & Wade, S. L. (2011). Caregiver ratings of long-term executive dysfunction and attention problems after early childhood traumatic brain injury: family functioning is important. PM & R 3 (09) 836-845
  • Le Fur C, Câmara-Costa H, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Watier L, Dellatolas G. & Chevignard, M. (2020). Executive functions and attention 7 years after severe childhood traumatic brain injury: Results of the Traumatisme Grave de l'Enfant (TGE) cohort. Annals of Physical and Rehabilitation Medicine 63 (04) 270-279
  • LeBlond E, Smith-Paine J, Narad M, Wade SL, Gardis M, Naresh M, Makoroff K. & Rhine, T. (2021). Understanding the relationship between family functioning and health-related quality of life in very young children with moderate-to-severe TBI. The Clinical Neuropsychologist 35: 868-884
  • Limond J, Dorris L. & McMillan, T. M. (2009). Quality of life in children with acquired brain injury: parent perspectives 1-5 years after injury. Brain Injury : [BI] 23 (07) 617-622
  • Lipkin M. & Crepeau-Hobson, F. (2022). The impact of the COVID-19 school closures on families with children with disabilities: a qualitative analysis. Psychology in the Schools 1-16 . Accessed June 12, 2023 at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9088372/
  • Luijten MA. J, van Muilekom MM, Teela L, Polderman TJ. C, Terwee CB, Zijlmans J, Klaufus L, Popma A, Oostrom KJ, van Oers HA. & Haverman, L. (2021). The impact of lockdown during the COVID-19 pandemic on mental and social health of children and adolescents. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 30 (10) 2795-2804
  • Magson NR, Freeman JY. A, Rapee RM, Richardson CE, Oar EL. & Fardouly, J. (2021). Risk and protective factors for prospective changes in adolescent mental health during the COVID-19 pandemic. Journal of Youth and Adolescence 50 (01) 44-57
  • McCarthy ML, MacKenzie EJ, Durbin DR, Aitken ME, Jaffe KM, Paidas CN, Slomine BS, Dorsch AM, Christensen JR, Ding R. & The Children's Health After Trauma Study Group. (2006). Health-related quality of life during the first year after traumatic brain injury. Archives of Pediatrics & Adolescent Medicine 160 (03) 252-260
  • McKee GB, Olabarrieta-Landa L, Pérez-Delgadillo PK, Valdivia-Tangarife R, Villaseñor-Cabrera T, Ramos-Usuga D, Perrin PB. & Arango-Lasprilla, J. C. (2020). Longitudinal growth curve trajectories of family dynamics after pediatric traumatic brain injury in Mexico. International Journal of Environmental Research and Public Health 17 (22) 22
  • Meade J. (2021). Mental health effects of the COVID-19 pandemic on children and adolescents. Pediatric Clinics of North America 68 (05) 945-959
  • Molloy EJ. & Bearer, C. B. (2021). Pediatric research and COVID-19: the changed landscape. Pediatric Research 92: 618-619 DOI: 10.1038/s41390-021-01857-0.
  • Morgul E, Bener A, Atak M, Akyel S, Aktaş S, Bhugra D, Ventriglio A. & Jordan, T. R. (2021). COVID-19 pandemic and psychological fatigue in Turkey. The International Journal of Social Psychiatry 67 (02) 128-135
  • Morrow EL, Patel NN. & Duff, M. C. (2021). Disability and the COVID-19 pandemic: a survey of individuals with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 102 (06) 1075-1083
  • Petranovich CL, Smith-Paine J, Wade SL, Yeates KO, Taylor HG, Stancin T. & Kurowski, B. G. (2020). From early childhood to adolescence: lessons about traumatic brain injury from the Ohio Head Injury Outcomes Study. The Journal of Head Trauma Rehabilitation 35: 226-239
  • Rashid M, Goez HR, Mabood N, Damanhoury S, Yager JY, Joyce AS. & Newton, A. S. (2014). The impact of pediatric traumatic brain injury (TBI) on family functioning: a systematic review. Journal of Pediatric Rehabilitation Medicine 7 (03) 241-254
  • Riccardi JS. & Ciccia, A. (2021). Cognitive fatigue in pediatric traumatic brain injury: a meta-analysis and scoping review. The Journal of Head Trauma Rehabilitation 36 (04) 226-241
  • Salley J, Krusen S, Lockovich M, Wilson B, Eagan-Johnson B. & Tyler, J. (2019). Maximizing expertise and collaboration to support students with brain injury: a case study in speech-language pathology. Perspectives of the ASHA Special Interest Groups 4 (06) 6
  • Spina S, Ziviani J. & Nixon, J. (2005). Children, brain injury and the resiliency model of family adaptation. Brain Impairment 6 (01) 1
  • Styck KM, Malecki CK, Ogg J. & Demaray, M. K. (2021). Measuring COVID-19-related stress among 4th through 12th grade students. School Psychology Review 50 (04) 4
  • Treble-Barna A, Zang H, Zhang N, Taylor HG, Yeates KO. & Wade, S. (2017). Long-term neuropsychological profiles and their role as mediators of adaptive functioning after traumatic brain injury in early childhood. Journal of Neurotrauma 34 (02) 353-362
  • Tso WW. Y, Wong RS, Tung KT. S, Rao N, Fu KW, Yam JC. S, Chua GT, Chen EY. H, Lee TM. C, Chan SK. W, Wong WH. S, Xiong X, Chui CS, Li X, Wong K, Leung C, Tsang SK. M, Chan GC. F, Tam PK. H. . . . Lp, P. (2022). Vulnerability and resilience in children during the COVID-19 pandemic. European Child & Adolescent Psychiatry 31: 161-176
  • Ueda R, Okada T, Kita Y, Ozawa Y, Inoue H, Shioda M, Kono Y, Kono C, Nakamura Y, Amemiya K, Ito A, Sugiura N, Matsuoka Y, Kaiga C, Kubota M. & Ozawa, H. (2021). The quality of life of children with neurodevelopmental disorders and their parents during the coronavirus disease 19 emergency in Japan. Scientific Reports 11 (01) 3042
  • van Markus-Doornbosch F, de Kloet AJ, Berger MA. M, Lambregts SA. M, Wolterbeek R. & Vliet Vlieland, T.P. M. (2016). Factors related to fatigue after paediatric acquired brain injury (ABI). Brain Injury : [BI] 30 (13-14), 1533-1541
  • Varni JW. (1998a). Pediatric Quality of Life Generic Core Scales. Mapi Research Trust
  • Varni JW. (1998b). Pediatric Quality of Life Multidimensional Fatigue Scale. Mapi Research Trust
  • Varni JW, Seid M. & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care 39 (08) 800-812
  • Viola A, Balsamo L, Neglia JP, Brouwers P, Ma X. & Kadan-Lottick, N. S. (2017). The behavior rating inventory of executive function (BRIEF) to identify pediatric acute lymphoblastic leukemia (ALL) survivors at risk for neurocognitive impairment. Journal of Pediatric Hematology/Oncology 39 (03) 174-178
  • Warren MA. & Bordoloi, S. D. (2020). When COVID-19 exacerbates inequities: the path forward for generating wellbeing. International Journal of Wellbeing 10 (03) 3
  • Yeates KO, Taylor HG, Woodrome SE, Wade SL, Stancin T. & Drotar, D. (2002). Race as a moderator of parent and family outcomes following pediatric traumatic brain injury. Journal of Pediatric Psychology 27 (04) 393-403
  • Zengin M, Yayan EH, Vicnelioğlu E. (2021). The effects of the COVID-19 pandemic on children's lifestyles and anxiety levels. Journal of Child and Adolescent Psychiatric Nursing 34 (03) 236-242