Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry

Kathy Ruble, Juliana Paré-Blagoev, Stacy Cooper, Allison Martin, Lisa A. Jacobson

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Background: Neurocognitive deficits are common after childhood cancer and impact academic performance. Parents need to be knowledgeable of long-term complications impacting school and the resources necessary to support educational achievement. The oncology team plays an important role in preparing parents for the challenges of returning to school after treatment. Methods: An online survey developed by parents and stakeholders was used to assess parent experiences and preferences associated with oncology team support around neurocognitive deficits and school transition. Recruitment included social media sites, foundation contacts, and clinic/event flyers. Topics included information content, timing, and frequency of information; and utility or perceived value of information. Inclusion criteria included respondent identifying as a parent (caregiver) of child treated for cancer who has returned to school. Results: Surveys from 203 parents were completed representing diverse geographic locations. Nearly half (48%) did not recall receiving information about neurocognitive deficits. The most frequently reported time to receive this information was at diagnosis, but parents reported a need for conversations throughout the cancer trajectory, especially at transition to survivorship and school reentry. In addition, half of the parents (51%) felt inadequately prepared for the return to school. Information about neuropsychological testing, resources for learning difficulties, educational terms, and legal rights related to school services were the topics most inadequately provided. Conclusions: Parents feel inadequately prepared by their oncology team for their child's return to school. Research is needed to identify effective oncology team approaches to fill the gaps in knowledge around school reentry after cancer treatment.

Original languageEnglish (US)
Article numbere27427
JournalPediatric Blood and Cancer
Volume66
Issue number1
DOIs
StatePublished - Jan 2019
Externally publishedYes

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Communication
Parents
Neoplasms
Therapeutics
Social Media
Geographic Locations
Civil Rights
Educational Status
Caregivers
Survival Rate
Learning
Research
Surveys and Questionnaires

Keywords

  • late effects of cancer treatment
  • long-term survival
  • psychosocial

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

Cite this

Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry. / Ruble, Kathy; Paré-Blagoev, Juliana; Cooper, Stacy; Martin, Allison; Jacobson, Lisa A.

In: Pediatric Blood and Cancer, Vol. 66, No. 1, e27427, 01.2019.

Research output: Contribution to journalArticle

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abstract = "Background: Neurocognitive deficits are common after childhood cancer and impact academic performance. Parents need to be knowledgeable of long-term complications impacting school and the resources necessary to support educational achievement. The oncology team plays an important role in preparing parents for the challenges of returning to school after treatment. Methods: An online survey developed by parents and stakeholders was used to assess parent experiences and preferences associated with oncology team support around neurocognitive deficits and school transition. Recruitment included social media sites, foundation contacts, and clinic/event flyers. Topics included information content, timing, and frequency of information; and utility or perceived value of information. Inclusion criteria included respondent identifying as a parent (caregiver) of child treated for cancer who has returned to school. Results: Surveys from 203 parents were completed representing diverse geographic locations. Nearly half (48{\%}) did not recall receiving information about neurocognitive deficits. The most frequently reported time to receive this information was at diagnosis, but parents reported a need for conversations throughout the cancer trajectory, especially at transition to survivorship and school reentry. In addition, half of the parents (51{\%}) felt inadequately prepared for the return to school. Information about neuropsychological testing, resources for learning difficulties, educational terms, and legal rights related to school services were the topics most inadequately provided. Conclusions: Parents feel inadequately prepared by their oncology team for their child's return to school. Research is needed to identify effective oncology team approaches to fill the gaps in knowledge around school reentry after cancer treatment.",
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