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


Journal

Pediatric blood & cancer
ISSN: 1545-5017
Titre abrégé: Pediatr Blood Cancer
Pays: United States
ID NLM: 101186624

Informations de publication

Date de publication:
01 2019
Historique:
received: 14 05 2018
revised: 03 08 2018
accepted: 04 08 2018
pubmed: 31 8 2018
medline: 23 10 2019
entrez: 31 8 2018
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

pubmed: 30160071
doi: 10.1002/pbc.27427
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e27427

Subventions

Organisme : PI
ID : #3916
Pays : International

Commentaires et corrections

Type : CommentIn

Informations de copyright

© 2018 Wiley Periodicals, Inc.

Auteurs

Kathy Ruble (K)

Department of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, Maryland.

Juliana Paré-Blagoev (J)

Johns Hopkins University School of Education, Baltimore, Maryland.

Stacy Cooper (S)

Department of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, Maryland.

Allison Martin (A)

Department of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, Maryland.

Lisa A Jacobson (LA)

Department of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, Maryland.
Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland.

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