We’ve published a new report outlining the findings of a study to assess the needs of disabled people in accessing our national screening programmes. It’s the first study of its type to be carried out in Ireland.
Aim of the study
The study aimed to capture the lived experiences of disabled people and document the barriers and enablers to participating in screening programmes.
What we wanted to know
We wanted to find out how disabled people experience screening services and how screening services could adapt to meet the needs of people with disabilities. We looked at all levels of access, including:
- how people are made aware of screening services
- how the screening process is communicated
- physical access to spaces.
What we did
We set up an Advisory Group in 2021 to inform the development of the study and to ensure it was inclusive of disabled people and their lived experiences. Members of the Advisory Group included Sage Advocacy, National Disability Authority, Inclusion Ireland, Federation of Voluntary Bodies, AsIAm, Independent Living Movement of Ireland, Irish Deaf Society, National Platform of Self-Advocates, Voice of Vision Impairment, Disabled Women of Ireland, and Physical Impairment Ireland.
We worked with researchers from Dublin City University’s School of Nursing, Psychotherapy and Community Health to complete the study.
How we did it
The research involved a literature review, focus groups and interviews. Twenty disabled people participated in the study representing those with Intellectual Disabilities, Autism, physical impairment, visual impairment, and the Deaf community. Five healthcare professionals and five family carers were also involved in the study.
What we learned
Some barriers to attending screening were identified:
- Letters with too much text or information makes it challenging for disabled people to decide whether to attend screening or not.
- There were some concerns expressed about being reliant on others to make appointments and support them when attending screening.
- Travelling longer distances to access screening was seen as a barrier due to cost and other logistical difficulties.
Disabled people reported several positive experiences of using screening services. These were captured as enablers to screening in the research:
- The willingness of staff to provide appointments of longer duration.
- Staff being supportive and compassionate.
- Providing information in Braille when asked to do so.
What we can do
Understanding the reasonable adjustments that can make screening a person-centred service is vital. Having an open and flexible approach to facilitate the needs of disabled people is acknowledged in the report as one of the strategies we do well. Disabled people recommend strengthening our collaborative work with Disabled People’s Organisations, and disability services to improve access to screening services.
Lynn Swinburne, Senior Health Promotion Officer with the National Screening Service and project lead said: “Listening to the lived experience of people accessing our services challenges us to think outside the box. We are pushed to get creative, to find ways to work around standard practices to enable everyone who is eligible to access screening if they choose to do so. We learn and grow as an organisation.”
Dr Mary Doherty, one of our patient and public representatives, worked with us on the Advisory Group and on the project team for this study. Mary said: “It was an honour to participate in this inclusive and important project. Understanding and tackling systemic barriers to screening for disabled people will enable parity of access and the early detection of potentially life-threatening conditions on an equal basis compared to the non-disabled population. This will directly and positively impact the poor health outcomes experienced by disabled people.“
The report is available in various accessible formats: a screen reader accessible version, an easy read summary, a plain English summary and an Irish Sign Language video summary.
Equity is a key priority for us in our strategy, Choose Screening – Together we can make a difference. We work with communities to reduce inequity in screening and enable more people to take part. We’ve published a 5-year strategic framework to improve equity in screening.