How Are Adults With Intellectual And/or Developmental Disabilities Represented And Included In Cancer Research: A Scoping Review - Info and Reading Options

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The objective of this scoping review is to explore and synthesize how adults with intellectual and/or developmental disabilities are identified and recruited, as well as represented in cancer research. In the past few decades, cancer research has shifted to centre the voices and experiences of patients in informing and guiding research. While adults with intellectual and/or developmental disabilities experience worse cancer-related outcomes compared to those without disabilities, including lower screening rates, more advanced stages at diagnosis, and lower survival likelihood, limited research has been conducted on how they are recruited and represented in cancer research. This mixed methods scoping review will examine how adults with intellectual and/or developmental disabilities are included in cancer research, specifically considering how they are recruited or identified in research, in addition to understanding their collaboration and involvement. Eligible studies will include cancer-related research that focuses on adults with intellectual and/or developmental disabilities and/or those involved in their care. The quantitative component of the review will include studies that explore cancer-related outcomes, such as cancer incidence, screening, staging, treatment, or survival among those with intellectual and/or developmental disabilities. These studies may or may not compare the estimates for those with intellectual and/or developmental disabilities to those without disabilities. The qualitative component of the study will explore the experiences of cancer patients with intellectual and/or developmental disabilities, or those involved with their care. Embase, Medline, PsycINFO and CINAHL will be searched to identify published studies from the creation of the United Nations Convention on Persons with Disabilities (UNCRPD; 2006) onwards. This proposed scoping review will align with the JBI methodology for mixed methods scoping review. We will screen titles and abstracts to identify relevant studies that will subsequently be reviewed in full and critically appraised. We will extract data from each study, including how participants were recruited in quantitative or qualitative research, and/or identified in administrative quantitative studies. We will also extract information on how participants and those who provided cancer-related care or support were involved in the studies (e.g., as participants, advisors, collaborators, etc.). Findings will be integrated to better understand how adults with intellectual and/or developmental disabilities are involved in cancer research, and potential next steps for enhancing accessibility and inclusion in cancer research.

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