Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge

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, forty 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 ninety 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 staffs’ health promotion and cancerprevention activities with these individuals.Results: The women with ID were reported to have significantly higher BMI’s than the men with ID and only two people with ID had been tested for the Helicobacter 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 cancerscreening 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 life-style as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.