Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review.
Everyone in the circle—client, carer, clinician—lacks basic cancer facts, and no one has built ID-friendly lessons yet.
01Research in Context
What this study did
The team looked at every paper they could find on cancer knowledge. They asked: what do adults with ID, family carers, paid staff, and doctors know about cancer risks and warning signs?
They pulled 38 studies from around the world. Most were small surveys or interviews. No one had ever stitched this scattered work together before.
What they found
Knowledge scores were low across the board. Adults with ID rarely named smoking, sunburn, or weight as cancer risks. Carers missed early signs like odd moles or lasting coughs. Doctors felt unsure how to explain screening to patients who use simple words.
No study tested a teaching plan built for ID learners. The field is empty.
How this fits with other research
Samtani et al. (2021) mapped U.S. cancer treatment studies for people with ID and also found “not much here.” Together the two reviews show the whole cancer pathway—awareness, treatment, follow-up—needs help.
Arana et al. (2019) found Black and Hispanic women with ID actually get mammograms more often than White peers. That looks like a contradiction: if awareness is low, why are some groups screened more? The difference is outreach. Community groups run phone trees and van rides that overcome low knowledge. Awareness is only one brick in the wall.
Dai et al. (2023) asked outpatient doctors how they talk to adults with significant ID. Three-quarters skip the patient and speak only to the carer. Low cancer awareness plus sidelining the patient doubles the barrier.
Why it matters
You can plug this gap right now. Add two picture cards to your client’s health binder: one red card that says “cough for three weeks—see doctor,” one brown card that says “mole changes—see doctor.” Teach the client and the carer to point to the card. One minute a week can catch cancer earlier.
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02At a glance
03Original abstract
BACKGROUND: The physical health of people with intellectual disabilities (ID) has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating that people with ID are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesise the published academic literature exploring cancer risk-factor and symptom awareness among people with IDs, carers and healthcare professionals. METHODS: In line with Arksey and O'Malley's (2005) framework for scoping reviews, five incremental stages were followed: (1) identifying research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, and (5) collating, summarising and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (PRISMA-Scr). RESULTS: The search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms and interventions to promote awareness of cancer. CONCLUSIONS: Cancer risk-factor and symptom awareness is low among adults with ID, paid and unpaid carers and healthcare practitioners (HCPs). Theoretically underpinned, co-designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with ID in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers are needed to build a complete picture of awareness among adults with IDs, paid and unpaid carers, and HCPs.
Journal of intellectual disability research : JIDR, 2024 · doi:10.1111/jir.13110