What are the psycho-social and information needs of adolescents and young adults cancer care consumers with intellectual disability? A systematic review of evidence with recommendations for future research and practice

Eidin Ni She*, Fiona E. J. McDonald, Laurel Mimmo, Xiomara Skrabal Ross, Bronwyn Newman, Pandora Patterson, Reema Harrison

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

1 Citation (Scopus)
49 Downloads (Pure)

Abstract

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Original languageEnglish
Article number1118
Pages (from-to)1-22
Number of pages22
JournalChildren
Volume8
Issue number12
DOIs
Publication statusPublished - 2 Dec 2021

Bibliographical note

Copyright the Author(s) 2021. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • adolescents and young adults
  • intellectual disability
  • cancer care
  • psychosocial and information support
  • health
  • transitions
  • systematic review

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