Four out of eight people with intellectual disabilities who participated in the study had never received a screening invitation due to varying reasons to a particular service despite being eligible said Dr Cithambaram.

Disabled people not accessing screening programmes – DCU study

05/12/2023

The 2016 census reported 13.5% disability in the Irish population, while the 2022 census indicated that 14% of individuals have some extent of disability. Yet many in this group are not accessing Ireland’s four national population-based screening programmes, according to a new report published by DCU researchers.

The report is called Breaking Down Barriers: An Assessment of the Needs of Disabled People in Accessing Population-Based Screening Services in Ireland.

“We have found evidence that many people with disabilities are not accessing BreastCheck, Cervical Check, BowelScreen and Diabetic RetinaScreen for a wide variety of reasons,” said Dr Kumaresan Cithambaram, Assistant Professor in Intellectual Disability Nursing who conducted the study that formed the basis of the report along with Dr Deirdre Corby, Dr Liz Hartnett, Dr Sean Healy and Dr David Joyce.

“We found that four out of eight people with intellectual disabilities who participated in the study had never received a screening invitation due to varying reasons to a particular service despite being eligible,” said Dr Cithambaram.

“We found other barriers to accessing screening including dependency of disabled people on others to make an appointment and attend a service, inaccessible communications, and long travel distances,” said Dr Cithambaram.

There are difficulties, too, for disabled people once they get to the screening stage. These include concern about negative attitudes among health professionals, confined spaces and inflexible equipment, and the need for support to collect the sample for bowel screening.

Some positive experiences noted by the participants were that professionals offered extended appointments, a supportive approach, and provided Braille information.

“There is an urgent need for the collection of information about disabled people who are eligible for screenings and have accessed those services to help service improvement,” said Dr Cithambaram.

The World Health Organisation states that to attain the highest possible standard of health and well-being for all, disability inclusion must be made intrinsic to health sector priorities.

Twenty disabled people participated in the study, representing those with intellectual disabilities, autism, physical impairment, visual impairment and the deaf community. In addition, five healthcare professionals and five family careers were involved.

The report made several recommendations:

Involve disabled people in all aspects of screening service design
Provide in-service disability awareness training to all staff involved in screening
All communications should be made accessible
Develop a clear protocol for the chaperone process
Provide guidelines and training on reasonable accommodations
Develop information and educational materials targeted at disabled people, their caregivers and family members
Include disability status and needs as part of the health screening record
Develop a platform to allow for feedback post-screening
Provide clear information about screening location accessibility
Establish a system for sharing information between the four screening services
Promote awareness of how to register and check the screening register
Investigate the lack of invitations reported by people with intellectual disabilities.