Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry.
Adaptation, Psychological
Adolescent
Cancer Survivors
/ education
Education, Special
Female
Follow-Up Studies
Health Communication
Humans
Male
Neoplasms
/ complications
Neurocognitive Disorders
/ etiology
Parents
/ psychology
Patient Care Team
/ standards
Professional-Family Relations
Prognosis
School Nursing
/ standards
Surveys and Questionnaires
late effects of cancer treatment
long-term survival
psychosocial
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
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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e27427Subventions
Organisme : PI
ID : #3916
Pays : International
Commentaires et corrections
Type : CommentIn
Informations de copyright
© 2018 Wiley Periodicals, Inc.