Population-based cancer screening access needs of disabled people: A qualitative evidence synthesis

Ability to perceive vs approachability

It is important for individuals to understand the importance and benefits of population-based screening in order to participate in it. When people perceive screening as a necessary and worthwhile activity, they are more likely to engage in it. Many studies in this review found that disabled people’s uptake of cancer screening services was influenced by their ability to view such screening as necessary. Data from included studies indicate that an individual’s perception of the need for cancer screening is influenced by several factors, with literacy skills being the most prominent (and the resultant dependency on family and caregivers) and their ability to communicate effectively with healthcare providers.

First, this review revealed that people with intellectual disabilities, mobility disability and sensory disabilities have difficulty reading screening information, which leads to family members having to communicate screening information to the individual and facilitate accessing the screening services (Llewellyn et al., 2011; McIlfatrick et al., 2011; Mele et al., 2005). Lower screening access was attributed to reading literacy issues and communication with professionals. In addition, professionals face difficulties in communicating the importance of screening programmes for those with intellectual disabilities and sensory disabilities. This often results in a lack of participation in such programmes (Arana-Chicas et al., 2020; Llewellyn et al., 2011):

“Participants who were severely impaired appeared not to have knowledge of mammograms, even after a mammogram picture was shown to them” (Arana-Chicas et al., 2020, p. 6).

The ability of individuals with intellectual disabilities and physical impairments to communicate effectively can influence their uptake of available screening services (Greenwood et al., 2014; Magasi et al., 2019; Seaton et al., 2018; Willis et al., 2015). People with intellectual disabilities may face difficulties retaining the information provided, which can influence their decision to register for screening (Willis 2016). Professionals may sometimes face challenges in communicating effectively, which can negatively impact the decision of people with intellectual disabilities to participate in screening programmes (Wood and Douglas, 2007):

“Particularly complex issues involved in explaining screening as opposed to therapeutic procedures, the need to enquire about sexual experience, and literacy issues in relation to invitation letters were seen as specific communication issues“ (Wood and Douglas, 2007, p. 88).

Levesque, Harris, and Russell’s framework suggests that the approachability of healthcare access depends on how service providers make their services more visible and accessible to the target populations. This is often linked to the transparency of screening services, their ability to reach the appropriate audience, and the provision of relevant and accessible information (Levesque et al., 2013). The review highlighted three factors shaping the approachability of population-based screening for disabled people. First, healthcare professionals in disability services are important, trusted sources of information for disabled people. Health education and promotional activities conducted by these professionals have the potential to increase awareness among people with intellectual disabilities and physical impairments about the importance of screening services (Arana-Chicas et al., 2020; Hanlon and Payne, 2017; Taggart et al., 2011). On the other hand, conflicting information from healthcare professionals regarding screening services for physical impairments can have a negative impact on the uptake of these services (Llewellyn et al., 2011).

Second, in addition to healthcare professionals, people with intellectual disabilities and physical impairments frequently rely on the information they receive from other sources, such as carers, friends, media, and the internet (Angus et al., 2012; Arana-Chicas et al., 2020; Llewellyn et al., 2011). In certain instances, this information from alternative sources was often favoured and trusted over healthcare professionals (Angus et al., 2012). In contrast, individuals with intellectual disabilities tend to rely on day service programmes to gain information and awareness about screening (Arana-Chicas et al., 2020):

“I don’t rely on my doctors for up-to-date information. I very much rely on what I hear from others, and the radio and internet” (Angus et al., 2012, p. 69).

Third, this review emphasised the significance of providing accessible information in screening services to ensure that people with intellectual disabilities understand the nature and importance of cancer screening. Simple and easy-to-read information, using plain language with images, is often necessary to communicate screening information effectively. Furthermore, the invitation to screening services that people with intellectual disabilities receive should be tailored to meet their specific requirements (Wood and Douglas, 2007):

“There was also agreement among the women that user-friendly leaflets or posters would be helpful in explaining breast awareness, breast screening and prevention albeit the information should be accessible with the writing ’big’ and 'easy to understand” (Truesdale-Kennedy et al., 2011).

Ability to seek vs acceptability

According to Levesque et al. (2013), seeking service refers to an individual’s ability to identify and access appropriate services when needed. Findings from 26 out of 32 included studies were related to seeking screening services and the acceptability of screening services. The review found that the dependency of some disabled people on others and the attitudes of screening professionals were the primary factors determining disabled people’s decision to seek cancer screening or not. There were multiple examples in the reviewed literature of disabled people depending on others to decide whether to engage with, register, and attend screening services. For example, people with intellectual disabilities and physical impairments frequently rely on others, such as primary carers or family members, to make an appointment and travel to the screening service (Angus et al., 2012; Arana-Chicas et al., 2020; Kilic et al., 2019). Family members are also frequently in a position where they must make decisions regarding screening for their disabled family members, especially those with intellectual disabilities. In some instances, family members were reported to judge that their family member with intellectual disabilities and physical impairments did not require screening services due to assumptions about their sexual activity or that screening was not a priority for the individual (Angus et al., 2012; Arana-Chicas et al., 2020; Greenwood et al., 2014; McIlfatrick et al., 2011; Swaine et al., 2013; Taggart et al., 2011):

“[my daughter] wasn’t sexually active, not dating, nothing like that, and having sex. It wasn’t really necessary to put her through it.” (Swaine et al., 2013, p. 68).

Some family members consider screening an important preventive measure and act proactively by making an appointment, facilitating the screening visit, and supporting their loved ones during the screening process (Arana-Chicas et al., 2020). Acceptability of service also influenced the attendance of disabled people at screening services. Acceptability is how the service provision is aligned with the cultural, personal and social expectations of the individuals seeking or utilising the service. Research by Angus et al. (2012) and Peters and Cotton (2016), for example, found that assumptions of normalcy and a lack of sensitivity to people with intellectual disabilities and physical impairments impeded screening utilisation (Kilic et al., 2019; Swaine et al., 2013):

“Assumptions of normalcy need to be replaced with an understanding of the nature of various disabilities and a focus on individualised care and reflective practice to combat oppression. The oppressive nature of both the machinery and the perceived uncaring environment led to participants feeling ‘put down’ and ‘powerless'” (Peters and Cotton, 2016, p. 188).

The studies reported instances of disabled people recounting how physical handling caused pain and humiliation, which influenced their decision to seek future screening services (Angus et al., 2012; Arana-Chicas et al., 2016, 2020; Peters and Cotton, 2014; Sullivan et al., 2004; Swaine et al., 2013). In addition, the specific needs of people with intellectual disabilities and physical impairments were often reported to be ignored, and observed that disabled people are more reluctant to seek help due to fear and anxiety (Peters and Cotton, 2014; Poulos et al., 2011; Truesdale-Kennedy et al., 2011):

“Some participants felt health care professionals saw them as dehumanised, depersonalised, voiceless bodies, almost like robots, that could be manipulated and moved in any way they saw fit to meet the needs of the breast cancer screening procedure, without regard for the participant’s dignity or physical, emotional, psychological and communicative needs.” (Peters and Cotton, 2014, p. 567).

Comorbidities and complex needs of people with intellectual disabilities were also reported to be important factors affecting how screening professionals perceived and responded within their services (Angus et al., 2012; Arana-Chicas et al., 2020; Taggart et al., 2011; Willis, 2016):

“Many women had complex medical conditions, requiring attention to multiple issues during health appointments, additional time and assistance to move about and communicate. Participants’ anecdotes suggested that providers might assign low priority to health promotion or screening under these circumstances. For example, one woman was refused a colonoscopy because of her history of respiratory illness.” (Angus et al., 2012, p.78).

On the contrary, there are positive experiences reported by disabled people regarding some screening professionals. For example, professionals were praised for helping disabled people to relax and assisting in making appointments, making an effort to accommodate their unique needs, providing reassurance, and allocating extra time (Arana-Chicas et al., 2020; Mele et al., 2005; Peters and Cotton 2016; Taggart et al., 2011).

Ability to reach vs accommodation

According to Levesque et al. (2013), the ability to reach pertains to the physical availability and accessibility of healthcare services when needed. Data from 25 studies indicate that the ability of disabled people to access screening services can significantly impact their uptake of these services. the ability of people to access screening services is determined by their ability to travel, mobility issues, and the accessibility of the service (Angus et al., 2012; Kilic et al., 2019; McIlfatrick et al., 2011; Mele et al., 2005).

“Transport and timing of the appointment were noted, which were seen to preclude women with intellectual disabilities access breast screening services: . . . access to the screening unit or mobile unit where the mammogram is going to take place. So a transport practicality may prevent them from coming.” (McIlfatrick et al., 2011, p. 416).

People with physical impairments also described how their physical mobility, location, and distance impacted their ability to attend screening services (Peters and Cotton, 2014). Some people with intellectual disabilities and physical impairments feel they lack stamina and have difficulty remaining in a similar position for a short period, as is sometimes required for a mammogram (Greenwood et al., 2014; Peters and Cotton, 2014; Poulos et al., 2011). Further, having short stature and using a wheelchair was reported to impede an individual’s ability to access screening services (Llewellyn et al., 2011; Sullivan et al., 2004).

The studies reported various accommodation issues encountered by disabled people during screening procedures, such as a lack of strategies or facilities to address their specific needs. Appropriate accommodation is essential to ensure the effective completion of the screening procedure for people with intellectual disabilities and physical impairments (Agaronnik et al., 2021; Arana-Chicas et al., 2020):

“Appropriate patient positioning is critical for ensuring image quality—inability to accommodate mobility disability can interfere with diagnosis. Furthermore, attitudes of clinical staff about providing accommodations can be just as important as physical accessibility ” (Agaronnik et al., 2021, p. 1254).

With appropriate accommodations and assistance, disabled people feel comfortable and safe. For example, the availability of healthcare attendants during screening can provide support to individuals with intellectual disabilities and physical impairments in various ways, such as assisting with wheelchair navigation, use of restroom facilities, bodily preparation, and handling of stool specimens (Angus et al., 2012; Arana-Chicas et al., 2020; Peters and Cotton, 2014):

“Accessible rooms and equipment, as well as attendant care enhanced comfort: Joining [accessible health centre] was very good for me… I feel very comfortable going there. The doctors I’ve dealt with, and the nurses are amazing. One lady comes to help you dress… This takes the stress off me for going to the doctor” (Angus et al., 2012, p. 80).

Disabled people also worry about the absence of flexible appointments when attending screening services. This lack of flexibility often leads to frustration. They feel the set timeframe is insufficient for proper communication and physical preparation. As a result, the healthcare professionals might rush the procedure and miss out on sharing critical information that should be conveyed before the procedure (Angus et al., 2012; Greenwood et al., 2014; Llewellyn et al., 2011; Peters and Cotton, 2014; Willis, 2016). Long wait times can also create frustration and sometimes force the individuals with physical impairments to use additional facilities, such as bathrooms, that are inaccessible (Kilic et al., 2019):

“For us, staying in the hospital for a long time means using the toilet there. It is really difficult to go to the toilet in the hospital. We need to finish our business and return as soon as possible.” (Kilic et al., 2019, p. 1982).

Also, the appointment time is crucial because some people with intellectual disabilities require more time to complete their morning routine and hygiene, making early morning appointments unsuitable (McIlfatrick et al., 2011):

“Maybe timing of appointments because a lot of these women need care in the morning. By the time you get them washed, their hygiene and get them fed, . . .and you know again with the distance and maybe having to be there for 9 am, you know, to allow an appropriate time in the afternoon to suit them.” (McIlfatrick et al., 2011, p. 416).

Several disabled people in the included studies shared their experiences of some positive accommodations when they attended screening services. When the staff attempted to accommodate their needs, they felt they were treated equally humanely (Llewellyn et al., 2011; Seaton et al., 2018; Sullivan et al., 2004):

“Many women praised the facility staff for their helpfulness and support, unfortunately this praise was not universal” (Llewellyn et al., 2011, p. 1764).

Disabled people often identified that the breast cancer screening procedure was inappropriate due to unsuitable mammographic machines. For example, the machine could not be adapted for people in a recliner wheelchair, the device is too high, and breast squeezing by the machine was reported as uncomfortable and painful for some (Angus et al., 2012; Peters and Cotton, 2014; Greenwood et al., 2014; Poulos et al., 2011; Sonalkar et al., 2020; Todd and Stuifbergen, 2012; Willis, 2016):

“The requirements of the mammography machine dictated breast screening staff procedures and practices. Women’s bodies were required to meet the machine’s needs, rather than the other way around. Their bodies had to contort and be contorted to accommodate its requirements” (Peters and Cotton, 2015, p. 186).

During cervical screenings, people with physical impairments have experienced discomfort due to inaccessible or inappropriate examination tables which need to be physically manoeuvring to access the table (Hanlon and Payne, 2017; Kilic et al., 2019; Mele et al., 2005; Solenberg et al., 2021):

“Having difficulty getting onto the table due to its height. She is reliant on others (a security guard) to lift her on and off the treatment table for the procedure. “The inability to be independent made her feel “manhandled” and caused a loss of personal dignity” (Hanlon and Payne, 2017, p. 22).

Some people with physical impairments have reported inadequate physical facilities that do not cater to their specific needs, leading to discomfort and discouragement in returning to screening services. For example, A small room space can make it challenging to move around, especially when using motorised wheelchairs in mobile clinics. Therefore, it was suggested to have bigger rooms that can accommodate these needs (Kilic et al., 2019; Solenberg et al., 2021; Sonalkar et al., 2020). In addition, others were frustrated with the inadequate facilities to mobilise within the screening centres, such as the lack of provision of lifts and ramps and the presence of revolved doors and heavily locked doors (Mele et al., 2005; Solenberg et al. 2021; Peters and Cotton, 2014):

“Needing better access. Participants who used wheelchairs had difficulties with access to BCS [Breast Cancer Screening] facilities. Using caravan facilities was generally prohibitive, and many clinic and hospital venues also posed access barriers in terms of lack of lifts and ramps.” (Peters and Cotton, 2015, p. 186).

There were concerns about inadequate and inaccessible changing and toilet facilities that lacked privacy (Peters and Cotton, 2014; Mele et al., 2005). In addition, the changing rooms are small and do not have enough space for mobility devices, making it difficult and unsafe to transfer in and out of them. (Angus et al., 2012; Mele et al., 2005):

“The bathrooms in their providers’ offices were not accessible. When they were, the doors did not lock automatically, increasing anxiety about privacy in those without the manual dexterity to lock the door. Toilets were also too close to the wall, making transfer difficult or unsafe” (Mele et al., 2005, p. 460).