Increasing cancer screening in women who are blind or have low vision

People with disability participate in cancer screening at lower rates than other Australians (Cancer Council Victoria, n.d.). Research is limited on cancer screening participation for people who are blind or have low vision, however international research found blind or low vision women are less likely to participate in cervical screening (Wu et al, 2021; Urgulu & Kocak, 2024).

Barriers to cancer screening for this population can include:

• Inaccessible documents and resources
• Costs of transport and health appointments
• Negative previous healthcare experiences
• Inaccessible buildings and health clinics
• Ineffective inclusion of this group in planned health promotion campaigns
• Low individual knowledge and confidence to undertake cancer screening

In June 2024, Cancer Council Victoria was approached by Blind Sports and Recreation Victoria (BSRV) to run a cancer education session for female members. Cancer Council Victoria collaborated with BSRV to run a cancer screening education session for female members. Cancer Council Victoria collaborated with BSRV to run two health education sessions in late 2024 – one online and one in person.

Preparation – increasing knowledge 

In the lead up to this event, Cancer Council Victoria’s community engagement team sought to increase knowledge of running effective health education workshops for people who are blind or have low vision. This included:

• Reading Australian guidelines for health professionals, including from Vision Australia and the Queensland Government Department of Health.
• Undertaking a literature review of resources on cancer screening already available for this cohort. This includes braille and large print resources for bowel screening. No resources existed for cervical screening at that time.
• Ordering and preparing resources for sessions, including props, physical anatomy models, demo kits, braille and large print resources, and standard print flyers. The team planned to have a range of resources available, noting that vision loss occurs across a spectrum.
• Meeting with BSRV prior to the session to understand the target audience’s requirements. This allowed Cancer Council to understand access needs for workshop participants, and learn which communication strategies were most appropriate to use during workshops. This was extremely helpful and greatly increased the team’s confidence and understanding of how to best discuss cancer with this group.

Preparation – accessibility scan 

Cancer Council Victoria hosted the in-person workshop at its office in East Melbourne. The team conducted a walk-through assessment of the accessibility of the office prior to the workshop.  This step was important in reducing any likelihood of friction experienced by attendees on the day and help make those attending the session feel as comfortable in the venue as possible.

Cancer Council staff checked the building for ease of access, presence of accessible toilets, trip hazards, signage, braille signage, and the easiest pathways for people with canes and/or guide dogs.

Guide Dogs can legally enter any public location in Australia. Cancer Council informed building management in advance about Guide Dogs attending the building to prevent any misunderstandings. 

Cancer Council sent a map of the building to sighted BSRV staff. 

Prior to the online session, Cancer Council reviewed their Zoom online meeting settings, ensuring that hosts were confident in using all accessibility functions relevant to the audience.

Finally, Cancer Council Victoria staff developed a presentation tailored to the audience. The team chose to create an informal spoken presentation instead of a PowerPoint presentation.

The team engaged with the audience throughout the presentation checking their levels of knowledge of cancer screening, having multiple people present, asking questions of the audience, and using tactile models and/or audio-described videos wherever possible.

Cancer Council Victoria and BSRV ran two health education sessions in August and September 2024 – one in person, and one online. Thirteen women who were blind or had low vision attended across both events, with six sighted support workers and/or BSRV staff also attending.

In person workshop

On the day of the workshop, Cancer Council Victoria staff waited outside the building to greet participants and ensure they were able to enter the building smoothly through the accessible doors. 

Staff then led participants to the meeting room through an extra accessible pathway. Participants were offered tea and coffee on arrival, and water bowls for guide dogs present. 

The workshop ran for two hours with a break, covering bowel and cervical cancer screening, with a focus on friendly informal discussions and questions. 

The audience included a range of women across different ages. Flexibility, preparation, positive partnerships, the use of tactile models, encouraging peer support and asking questions throughout the in-person session were highly effective tools that appeared to increase audience engagement and learning. 

Cancer Council Victoria staff started the workshop with introductions, and then requested participants evaluate their prior knowledge on cancer screening through a show of hands. 

In Cancer Council Victoria’s presentation, staff handed out cervical screening self-swabs, speculums and bowel screening demo kits to the group to feel. This allowed participants to familiarise themselves with screening tools without worrying about contamination of real tests. 

Staff worked with individuals to show them how to lay out the bowel screening test on a plate as if it was a toilet bowel. Staff also showed individuals who requested this how to hold the cervical screening self-collection test up and using a hand to represent a vagina, showing how a person might insert the swab themself. 

This made instructions accessible to this audience as current screening instructions are tailored to sighted readers and rely on pictures to explain the process. 

The group discussed methods for making screening more accessible, with many participants sharing work-arounds they had used in the past. Insights from this discussion were passed on to relevant organisations and authorities after the session to hopefully increase the accessibility of cancer screening tests in future.

Online Zoom workshop

The Zoom session went for 1.5 hours and was facilitated by BSRV using its usual Zoom process. In this workshop, Cancer Council Victoria and BSV used spoken presentations to introduce cancer screening. 

The use of image descriptions and emphasis on making space for questions during the Zoom online sessions allowed attendees to engage easily. 

The audience included women from metropolitan, regional and rural areas of Victoria. Online workshop participants had the option to request a pack to be sent out in the mail with demo cervical and bowel screening kits after the session, allowing them the same access that in-person workshops had.

Feedback

Overall, workshop attendees reported a positive experience and verbally described an increase in awareness, knowledge and confidence to complete bowel and cervical screening following both information workshops. 

Participants requested additional workshops and education sessions in future. 

Staff at Cancer Council Victoria benefited from the session by increasing their knowledge of working with people who are blind or have low vision. 

Additionally, staff gathered feedback from the attendees of both sessions on how to make cancer screening more accessible to people who are blind or have low vision. With the permission of workshops attendees and BSRV staff, Cancer Council Victoria has passed on this highly useful feedback to relevant organisations and authorities to hopefully increase the accessibility of cancer screening tests in future. 

Cancer Council Victoria staff had a range of learnings from this project, including:

• Preparation and tailoring to the needs of target audiences is essential.
• Cancer Council staff did not have all the answers to how people who are blind or with low vision might do bowel or cervical screening. Peer support between people with this lived experience was very helpful; attendees swapped logistics tips with each other.
• Many of the attendees had had prior negative experiences from doctors not meeting their needs in health care and cancer screening. It was important to acknowledge this as well as prior ableism experienced by workshop participants. Together we discussed what accessible, positive and useful health care experiences might look like.
• Friendliness, openness to questions and not rushing participants in their requirements were important for creating a welcoming atmosphere.
• While having food was positive in the in-person session, it became a bit distracting and difficult for attendees to hear past the sound of food and drink being consumed. In future, Cancer Council will serve food before or after verbal presentations.
• There are additional taboos and challenges faced by people who are blind or low vision to do cancer screening. For example, a participant mentioned that having to ask a partner or support worker to assist in completing a bowel screening test can be too embarrassing.
• Cancer Council Victoria planned to evaluate both sessions at the end through a "show of hands” approach to verbal questions. This was not possible due to the session running overtime, and people needing to leave exactly on time due to access requirements like taxi bookings. Instead, staff relied on verbal feedback from participants to more informally assess the effectiveness of the session.
• Cancer Council Victoria made considerable efforts to create an in-person session that was accessible and inclusive to the target audience. However, some existing aspects of the building and organisational processes presented unavoidable challenges. 

References

Cancer Council Victoria. (n.d.). Profile and statistics: People with disabilities. Cancer Screening Hub. https://screeningresources.cancervic.org.au/people-with-disabilities/profile-statistics-disability

Ugurlu M & Kocak DY. (2024). Breast and Cervical Cancer Screening Experiences and Barriers Among Visually Impaired Women: A Mixed Method Study. Sexuality and Disability, 42(3), 647–660. https://doi.org/10.1007/s11195-024-09853-y