Are researchers addressing cancer treatment and survivorship among people with intellectual and developmental disabilities in the U.S.? A scoping review

Grace Samtani, Tamsen L. Bassford, Heather J. Williamson, Julie S. Armin

Research output: Contribution to journalArticlepeer-review

Abstract

People with intellectual and developmental disabilities (PWIDD) often encounter barriers in the health care system when seeking general and specialized medical care. Literature has shown that PWIDD experience a lack of proper screening for and prevention of cancer compared to the general population. However, less is known regarding the cancer care and survivorship of PWIDD, especially in the United States. In this review, we examine what is currently known about the primary, psychosocial, and palliative care of PWIDD diagnosed with cancer. Our analyses reveal an immediate need for improvement in caregiver support, collaboration among health care providers, and ethical approaches to information disclosure for this population, as well as the establishment of more reliable standards of care through additional research with PWIDD.

Original languageEnglish (US)
Pages (from-to)141-154
Number of pages14
JournalIntellectual and Developmental Disabilities
Volume59
Issue number2
DOIs
StatePublished - Apr 2021

Keywords

  • Cancers
  • Developmental
  • Disability
  • Intellectual
  • Review
  • Treatment

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Education
  • Developmental and Educational Psychology
  • Community and Home Care
  • Psychiatry and Mental health

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