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Beight LJ, Helton G, Avery M, et al. Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children. J Pain Symptom Manage. 2021;doi: 10.1016/j.jpainsymman.2021.07.017.
Beight, L. J., Helton, G., Avery, M., Dussel, V., & Wolfe, J. (2021). Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children. Journal of pain and symptom management, . https://doi.org/10.1016/j.jpainsymman.2021.07.017
Beight, Leah J, et al. "Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children." Journal of pain and symptom management vol. (2021). doi: https://doi.org/10.1016/j.jpainsymman.2021.07.017
Beight LJ, Helton G, Avery M, Dussel V, Wolfe J. Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children. J Pain Symptom Manage. 2021 Jul 29; doi: 10.1016/j.jpainsymman.2021.07.017. Epub 2021 Jul 29. PMID: 34333095; PMCID: PMC8319041.
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J Pain Symptom Manage. 2021 Jul 29; doi: 10.1016/j.jpainsymman.2021.07.017. Epub 2021 Jul 29.

Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children.

Journal of pain and symptom management

Leah J Beight, Gabrielle Helton, Madeline Avery, Veronica Dussel, Joanne Wolfe

Affiliations

  1. Department of Psychosocial Oncology and Palliative Care (L.J.B., G.H., M.A., V.D., J.W.), Dana-Farber Cancer Institute. Boston, MA, USA.
  2. Pediatric Palliative Care (V.D.), Dana-Farber Boston Children's Cancer and Blood Disorders Center, Boston, MA, USA; Center for Research and Implementation in Palliative Care (CII-CP) (V.D.), Institute for Clinical Effectiveness and Health Policy (IECS), Buenos Aires Argentina.
  3. Department of Psychosocial Oncology and Palliative Care (L.J.B., G.H., M.A., V.D., J.W.), Dana-Farber Cancer Institute. Boston, MA, USA; Department of Pediatrics (J.W.), Boston Children's Hospital. Boston, MA, USA. Electronic address: [email protected].

PMID: 34333095 PMCID: PMC8319041 DOI: 10.1016/j.jpainsymman.2021.07.017

Abstract

CONTEXT: Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care.

OBJECTIVE: To explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children.

METHODS: We recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics.

RESULTS: Sixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth. One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary.

CONCLUSION: Families caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care.

Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Keywords: COVID-19; children with serious illnesses; telehealth

References

  1. J Soc Work End Life Palliat Care. 2021 Apr-Sep;17(2-3):218-236 - PubMed
  2. J Autism Dev Disord. 2021 May;51(5):1772-1780 - PubMed
  3. Psychiatry Res. 2020 Nov;293:113429 - PubMed
  4. J Appl Res Intellect Disabil. 2020 Nov;33(6):1523-1533 - PubMed
  5. Hosp Pediatr. 2021 Feb;11(2):208-212 - PubMed
  6. Expert Rev Anticancer Ther. 2020 Jul;20(7):527-529 - PubMed
  7. Pediatrics. 2012 May;129(5):996-1005 - PubMed
  8. J Child Neurol. 2014 Aug;29(8):1091-100 - PubMed
  9. Ann Indian Acad Neurol. 2020 May-Jun;23(3):358-359 - PubMed
  10. J Biomed Inform. 2019 Jul;95:103208 - PubMed
  11. CMAJ. 2020 Aug 10;192(32):E921-E927 - PubMed
  12. Palliat Med. 2020 Oct;34(9):1202-1219 - PubMed
  13. Acta Paediatr. 2020 Sep;109(9):1897-1898 - PubMed
  14. J Biomed Inform. 2009 Apr;42(2):377-81 - PubMed
  15. J Pediatr. 2021 Aug;235:305-306.e2 - PubMed
  16. Pediatr Blood Cancer. 2021 Feb;68(2):e28790 - PubMed
  17. AMIA Annu Symp Proc. 2014 Nov 14;2014:681-90 - PubMed
  18. Pediatr Ann. 2020 Nov 1;49(11):e473-e477 - PubMed
  19. Pediatrics. 2021 Mar;147(3): - PubMed
  20. Int J Pediatr Otorhinolaryngol. 2020 Nov;138:110383 - PubMed
  21. Eur Child Adolesc Psychiatry. 2020 Nov 17;: - PubMed
  22. Pediatrics. 2020 Oct;146(4): - PubMed
  23. Eur J Gen Pract. 2018 Dec;24(1):9-18 - PubMed
  24. Hosp Pediatr. 2021 Jan;11(1):79-87 - PubMed
  25. Pediatrics. 2011 Jun;127(6):1094-101 - PubMed
  26. J Clin Oncol. 2007 Jun 10;25(17):2414-9 - PubMed
  27. Pediatrics. 2020 Nov;146(5): - PubMed
  28. J Pediatr Rehabil Med. 2020;13(3):415-424 - PubMed
  29. J Pain Symptom Manage. 2021 Sep;62(3):e91-e99 - PubMed
  30. BMC Palliat Care. 2014 Mar 13;13(1):9 - PubMed
  31. Glob Pediatr Health. 2020 Sep 30;7:2333794X20957652 - PubMed
  32. Ann Phys Rehabil Med. 2021 May;64(3):101429 - PubMed
  33. Psychooncology. 2013 Nov;22(11):2436-44 - PubMed
  34. J Autism Dev Disord. 2021 Jun;51(6):2155-2158 - PubMed
  35. Acta Paediatr. 2020 Nov;109(11):2181-2183 - PubMed
  36. J Intellect Disabil Res. 2020 Sep 17;: - PubMed
  37. J Med Internet Res. 2015 Oct 06;17(10):e227 - PubMed
  38. J Pediatr. 2021 Apr;231:168-177.e1 - PubMed
  39. Acta Paediatr. 2020 Nov;109(11):2187-2188 - PubMed
  40. Pediatrics. 2020 Oct;146(4): - PubMed
  41. Children (Basel). 2018 Feb 20;5(2): - PubMed
  42. Res Dev Disabil. 2020 Dec;107:103790 - PubMed
  43. Eur Child Adolesc Psychiatry. 2021 Feb 26;: - PubMed
  44. J Autism Dev Disord. 2021 Jun 3;: - PubMed
  45. Epilepsy Behav. 2020 Nov;112:107493 - PubMed
  46. J Pediatr. 2021 Jan;228:324-325.e2 - PubMed
  47. PLoS One. 2020 Oct 16;15(10):e0240962 - PubMed
  48. Phys Ther. 2021 Jan 4;101(1): - PubMed
  49. J Pediatric Infect Dis Soc. 2019 Mar 28;8(1):21-28 - PubMed
  50. J Clin Oncol. 2008 Oct 10;26(29):4759-64 - PubMed
  51. Pediatrics. 2011 Mar;127(3):529-38 - PubMed

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