Cancer Council Victoria assessed the barriers to screening for people with disabilities, which included stakeholder interviews, a literature review and social media consultations. The assessment found key themes for barriers for people with disabilities participating in cancer screening, as well as for health professionals and providers delivering screening services. Common barriers are discussed below.
Communication barriers are present throughout the entire screening process, including cancer screening pathways.
- Making an appointment over the phone or online is a hurdle for many people with disabilities. It is also challenging for some people with verbal limitations to communicate with doctors or carers, and advocate for themselves.
- For people with a intellectual disabilities, health literacy and comprehension of medical information is a significant barrier. Information is rarely presented in an Easy English format and is often found to be overly complex throughout the entire screening pathway, including screening reminders and recall letters. This barrier is further compounded for people with a disability who English is not a first language.
The costs associated with cancer screening restrict participation for some people with disabilities. Although BreastScreen Victoria offers a free service and many GPs bulk bill for cervical screens, costs associated with organising specialised taxis and employing a carer or support person to assist with the journey can be prohibitive.
Access is a broad term encompassing several barriers that are prevalent across the three screening programs and throughout the entire screening pathway.
Accessibility of clinics or GP services
This includes infrastructure barriers such as wheelchair accessible ramps, wide doorways, lowered reception desks and accessible toilets and parking.
Travel and transport
For many people with disabilities travelling to an appointment is complex. Public transport can be difficult to navigate. Relying on specialised taxis or a paid support person to help with the journey can be financially draining.
- An adjustable bed or hoist may be required for women with physical disabilities having a cervical screen. Installing adjustable beds/hoists is expensive and, as a result, not all health services or GP rooms are equipped with one or have one readily available at time of appointment. Lack of this equipment may result in an individual needing to travel further to another clinic, often at additional cost.
- For bowel cancer screening, it can be challenging for people with visual or physical limitations to collect the faecal sample, as it requires a high level of coordination. Furthermore, people with visual impairment may not be able to identify the home bowel screening kit when it arrives in the mail, read the information it contains on how to do the kit and complete the questionnaire or details on the collection tube. Given the sensitive nature of the test, people may feel embarrassed about asking a family member or friend to assist with the process.
- Women with physical disabilities may also face some obstacles in accessing a mammogram. The design of the mammogram machine means that women need to be able to either stand unassisted, or lean forward in their wheelchair, while lifting their arm above the shoulder. For some women in wheelchairs or with limited mobility this may not be possible.
Competing health needs
People with disabilities often have co-morbidities and additional health needs, resulting in many medical appointments. As a result, preventative health (including cancer screening) are not high priorities for the patient or GP.
Fear and anxiety about cancer screening are common barriers experienced by the general population; however, for people with disabilities these feelings may be more profound. Previous experiences with hospitals and health professionals which may have been traumatic, impact heavily on people's decisions to participate in cancer screening or return for a re-screen or diagnostic assessment.
A significant barrier for women with disabilities (particularly intellectual disability) participating in cervical screening is the assumption that they are not sexually active by health professionals, families and carers. This results in a lack of discussion about cervical screening. Also, a common assumption from health professionals is that people with disabilities “do not get cancer” and that any pain, illness or changes are due to the disability rather than anything else.
Health professionals, families and carers
Health professionals, families and carers are often the gatekeeper to medical appointments and procedures. If carers are not aware of cancer screening , they may lack the knowledge or skills to promote it to the person they care for. There may also be a reluctance to encourage cancer screening due to concerns about what to do next if cancer was to be detected. The Centre for Developmental Disability Health will provide support to health services to address the health needs of adults with intellectual and associated developmental disabilities.
It is vital to consider compounding barriers that will affect people with disabilities participating in cancer screening. People with a disability who are, for example, also culturally and linguistically diverse, Aboriginal or Torres Strait Islander or LGBTI may experience extra barriers that affect those communities, in addition to the barriers affecting people with disabilities.