What knowledge and attitudes do paid carers of people with a learning disability have about cancer?

Abstract

The purpose of this study was to explore the knowledge and attitudes of paid carers of people with a learning disability regarding cancer. A questionnaire was utilised to gather information from carers involved in the social care of adults with learning disabilities within the independent sector. A total of 324 questionnaires were returned. Subjects were asked to provide words that they associated with cancer to provide data on their attitude to cancer. Knowledge-based questions examined their knowledge on the possibility of recovery from cancer, the likelihood of cancer (particularly in relation to people with learning disabilities), types of cancer, risk reduction and early signs and detection. Subjects were also asked for their views regarding the adequacy of their knowledge and training needs. The findings indicated that the carers had some knowledge regarding cancer, but strategies for preventing and detecting cancer with adults with learning disabilities were not clearly elucidated.

Colorectal Cancer in People with Intellectual Disabilities

“…Unlike other cancer screening programmes, bowel screening it is less invasive and offers a unique way to detect cancer early in patients who have difficulties accessing health care. Despite this, there are recognized barriers to cancer screening for PWIDs: difficulties in obtaining informed consent, lack of accessible information, inadequate support to complete the test, reduced accessibility to screening procedures, and negative attitudes and limited awareness about PWIDs among health professionals [59,[77][78][79][80][81]. One of the biggest difficulties is that PWIDs often find it difficult to communicate their pain and unease, and often react with unusual and sometimes challenging behaviour [82], such as quietness or overactivity.…”

“…Unfortunately, lack of early identification is often attributed to poor knowledge about cancer and cancer screening in health and social care staff [58,78,81,83]. For example, 1 study [81] surveyed 324 social care staff, reporting that 89% had received little training in cancer care, whilst 83% noted their knowledge of the signs, symptoms, and risks of cancer was limited.…”

“…For example, 1 study [81] surveyed 324 social care staff, reporting that 89% had received little training in cancer care, whilst 83% noted their knowledge of the signs, symptoms, and risks of cancer was limited. This was supported by previous work suggesting limited knowledge and training of health staff, including GPs, nurses, and radiographers [61,62,[86][87][88].…”

Inconsistencies in the roles of family‐ and paid‐ carers in monitoring health issues in people with learning disabilities: some implications for the integration of health and social care

“…There were no clear standards in place regarding training in health needs other than mandatory basic training, and this concurs with previous work (Gillings‐Taylor ; Janicki et al . ; McCarthy ; Wyatt & Talbot ). This was compounded by the suggestion in the findings that unlike the care given by the family‐carers, the continuity of care for the clients by paid‐carers was sometimes lacking.…”

“…; Janicki et al . ; McCarthy ; Wyatt & Talbot ). Furthermore, studies suggest that aspects of healthcare are often not considered to lie within their remit, that they lack the necessary training or that they may refuse the treatment on behalf of the individual (Davies & Duff ; Gillings‐Taylor ; Poynor ; Tyler et al .…”