Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge.
Residential staff lack the training and tools to protect adults with intellectual disabilities from cancer.
01Research in Context
What this study did
Amore et al. (2011) asked residential staff about cancer prevention for adults with intellectual disabilities.
They used a short survey. Staff answered questions about training, family history records, and health teaching.
What they found
Most staff said they had little or no cancer-prevention training.
They rarely knew if clients had a family history of cancer.
Health promotion activities were hit-or-miss.
How this fits with other research
Matson et al. (2011) talked to staff in the same year and heard the same story: big knowledge gaps about breast screening.
Elmadani et al. (2024) later looked at eight small education studies. Training boosted knowledge only a little and no one tracked if people actually got screened.
Goodwin et al. (2012) asked the women themselves. The clients knew even less than the staff, showing the problem runs both ways.
Together the papers paint one clear picture: everyone in the system needs better, longer training and a plan that ends in real screening, not just a handout.
Why it matters
You can’t teach clients what you don’t know. Start by giving staff a one-page cheat sheet on cancer risks, family history questions, and local screening contacts. Role-play asking those questions at the next team meeting. Track who gets referred. Small, steady steps close the gap the study found.
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02At a glance
03Original abstract
BACKGROUND: As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in health promotion and cancer prevention activities is also a challenge; yet, people with ID have an equal right to these important public services as other members of the population. AIMS: The aim of this study was to examine how care staff engaged in cancer prevention and health promotion activities on behalf of people with ID. METHODS: This was an exploratory descriptive study using a postal survey design employing a questionnaire. Fifteen residential facilities for adults with ID were targeted within one geographic region of the UK. In total, 40 residential staff completed a questionnaire about their knowledge of the risk and protective factors of stomach, breast, cervical and testicular cancer. Staff then completed questionnaires regarding 90 adults with ID, recording details about body mass index (BMI), lifestyle choices (i.e. smoking, dietary intake), Helicobacter pylori testing, family history of cancer and staff's health promotion and cancer prevention activities with these individuals. FINDINGS: The women with ID were reported to have significantly higher BMIs than the men with ID and only two people with ID had been tested for the H. pylori infection: potential risk factors for developing breast and stomach cancer, respectively. The majority of the staff reported that they did not receive training in cancer prevention. Likewise, the majority of the staff reported that they were unaware of the family histories of the people with ID in their care. Reports varied with how staff engaged with people with ID regarding stomach, breast, cervical and testicular cancer health promotion activities and cancer screening opportunities. DISCUSSION: Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2010.01357.x