Overcoming Barriers to Bowel Screening for First Nations Australians

FormalPara Key Points

• A one-size-fits-all cancer screening program is unlikely to address logistical and cultural barriers that may discourage First Nations people from participating.

• Co-designing access to cancer screening programs to meet the needs and preferences of First Nations Australians can be an effective way to increase participation.

• A key enabler to increasing First Nations people’s participation in bowel cancer screening is the involvement of a trained and trusted health professional to explain why bowel screening is important and to demonstrate how to do the test.

Bowel cancer kills more than one million people globally each year. It has few distinctive symptoms until it has reached an advanced stage, by which time survival rates are low. However, if diagnosed early, more than 90% of cases can be successfully treated [1].

Australia’s National Bowel Cancer Screening Program (NBCSP) aims to reduce deaths from bowel cancer by detecting early signs of the disease. Drawing on Australian Government data, eligible Australians aged 50–74 are mailed a free test every two years, to be completed at home [2]. Like many bowel cancer screening programs around the world, the Australian program uses an immunochemical fecal occult blood test (iFOBT). In 2016, participation in this program was 41% nationally but was considerably lower among some population groups, particularly those in very remote locations (28%) and First Nations Australians (23%) [2].

Here, we describe a model of an alternative access pathway for the NBCSP, which we piloted at primary healthcare centers across Australia. Our work demonstrates that an alternative access pathway can achieve participation by First Nations people at similar rates to non-Indigenous Australians [3]. An adapted version of the alternative access model has since been incorporated as a permanent component of the NBCSP and is accessible to all Australians [4].

The development of the alternative access pathway was informed by the Promoting Action on Research Implementation in Health Services (PARiHS) framework [5]. This framework is based on the simple concept that effective implementation depends on understanding the evidence-based innovation to be implemented and the context in which it is to be implemented and facilitating the bridging of gaps between the two. In this case, the PARiHS framework was applied to understand how gaps between the evidence-based innovation (the NBCSP) and the context (how it fits the needs and preferences of First Nations people) might be improved. The project was led by a senior Aboriginal researcher, and its governance included First Nations advisors throughout the project. We consulted key stakeholder groups, including the Indigenous primary healthcare sector; Indigenous and non-Indigenous healthcare professionals; First Nations people eligible for bowel screening; individuals, families, and carers of First Nations people affected by bowel cancer; cancer councils; and relevant government departments. Our research involved four phases: (1) initial research to understand barriers and enablers to screening, (2) development of training and promotional resources to support the delivery of an alternative access pathway, (3) large-scale piloting of an alternative access model, and (4) evaluation of the model.

Barriers That Discourage First Nations People from Screening

Our research identified several key barriers to participation in the NBCSP. Most stemmed from a poor fit between the design features of the screening program and the diverse geographic, economic, and social contexts of First Nations communities.

• The NBCSP uses data from Medicare, Australia’s universal healthcare system, to identify potential NBCSP participants. Some First Nations Australians are not enrolled in Medicare, or may not have their contact details up to date, and thus will not receive a bowel screening kit.

• Some of those who receive kits may throw them away unopened, for reasons including the lack of understanding of what they contain, feeling alienated by the appearance, or distrust of the materials sent by the government.

• Some participants may have difficulty reading test instructions that are text heavy and written in small print.

• There is a distaste for the test itself. Many people are put off by the idea of storing samples in the fridge and imagine the test involves the direct handling of feces.

• Some people feel “shame” (embarrassment, shyness, discomfort, disrespect) about being seen carrying a bowel screening kit.

The Alternative Access Model

The alternative approach involved providing NBCSP kits to local primary healthcare centers, where health professionals have trusted relationships with eligible participants and can hand them kits directly. The appearance of the kit was improved by covering the front of the envelope with a large, brightly colored sticker featuring a First Nations design (Fig. 35.1). Healthcare professionals were actively engaged in their patients’ bowel screening journey, discussing the kit with participants, explaining how to use it, and following up with patients who received positive test results.

Fig. 35.1

Culturally relevant sticker attached to NBCSP kits

What Did We Do?

We conducted a cluster-randomized controlled trial, with randomization of eligible health centers to receive either low-intensity or high-intensity support to implement the alternative approach. All centers received access to an online training module for health professionals, an implementation manual for the alternative approach, telephone help desk support, and promotion and information resources (e.g., posters, postcards, a flip chart, fact sheets, and colorful stickers to cover the front of the standard iFOBT kit). Health centers in the high-intensity group were also offered face-to-face training as part of a site visit by members of the research team. Thirty-six primary healthcare centers took part in the trial over 12 months.

The trial resulted in a significantly higher participation rate for First Nations people (39.8%) compared to the usual pathway (23.3%), a rate more closely matching that of non-Indigenous Australians (40.6%). Screening rates were comparable across urban (47%), regional (45%), and remote (38%) locations. Of note, a 47% screening rate was achieved by those from the lowest socioeconomic group, compared with 37% for all Australians for the usual pathway.

Screening participation rates showed no significant difference between health centers that were in either the low-intensity or high-intensity support groups. Staff from both groups experienced a significant increase in confidence in discussing bowel screening with First Nations patients. The high-intensity group (which received face-to-face training) also improved their perceptions of their roles in relation to bowel screening.

Factors for Success

Several factors were identified that encouraged First Nations people to participate in the NBCSP:

• Verbal and visual communication from a trusted health professional: having a trusted health professional discuss the test with patients, explain its importance, and demonstrate how to do it was key. Doctors referred to the kit as a “game changer” and said that being able to handle the kit, show how to use it, and give it to the patient dissolved many previous barriers. Many health professionals reported that when they demonstrated how to take samples, patients responded: “Is that all it is?”

• Education for healthcare professionals to overcome barriers to action: prior to the trial, primary healthcare professionals only typically became involved in the NBCSP if a patient returned a positive test result. Some health professionals felt uneasy about raising the issue of bowel screening with First Nations patients for fear of causing offense. Aboriginal Health Workers expressed a desire to know more about bowel cancer and cancer care in order to increase their confidence in providing information to individuals, families, and the broader community. All health professionals had access to training that included information about the national program, bowel cancer, cancer care, the trial, and evidence-based techniques for communicating with First Nations patients about bowel screening.

• Key messages and a starter set of health promotion materials: health professionals were provided with a small set of evidence-based key messages, supported by a range of visually appealing materials. These materials were used largely as conversation starters, with patients receiving key messages through conversation.

• Addressing the needs and preferences of patients: health centers were encouraged to consider and address specific barriers to screening experienced by their patient cohort. For example, some health centers offered to store patient test samples at the clinic and mail them on behalf of the patient; others had the community bus driver collect test samples from the patient’s home in a small cool box.

• Getting the messages right: the culturally appropriate key messages and materials used in the trial were developed and tested through many iterations, by and with First Nations consumers, educators, and health professionals. Some of the most powerful key messages came from community-developed music videos. An experienced facilitator and music production team worked with each of four First Nations communities to make a five-minute music video to encourage people to carry out the bowel screening test.

Patient Perspectives

The COVID-19 pandemic limited follow-up with participants. A small number of patients (n = 5) who completed the NBCSP test after receiving it from their local health center provided some feedback about the trial.

These patients perceived their health centers as trusted, credible, culturally safe places, which improved their receptiveness to screening. The health center’s supportive approach provided important encouragement and support, features that were absent when the kit was received in the mail.

One patient said, “The Aboriginal Health Worker contacted me and we had that little yarn [talk about bowel screening] … He’s very respectful and diligent and thorough and a good bit of sense of humor you know … He explained it all to me … rather than just having the package arrive.”

Another said, “They both came [Aboriginal Health Workers] and dropped it off [at home] … went through a bit of an explanation and so I found it quite simple … but I think, to me, I probably wouldn’t have bothered for a few more years unless they came and chased me up.”

Staff’s persistence in asking patients if they had taken the test also encouraged completion: “I think [when it comes through the post], people don’t want to know about it and will probably … forget about it, but if you come in here and you’ve got [health professionals] on your case, well you get it done.”

Participants reported on the impact of seeing First Nations people talk about bowel cancer on the health center’s TV in the waiting room: “Yeah, they have a TV [medical information channel] … I saw one lady talking about her dad and she wished that he had done it, that he’d sought out help a lot earlier and he wouldn’t have died on her … Because of the similarities in his life and my life … I was thinking, ‘Oh well, that might happen to me [so I] better have a check-up.’”

A participant who received a positive test result became a passionate advocate for doing the test: “After … that first time … I was actually telling my mates down the pub and everywhere, you know, about doing the test and, you know, because you never know, it can grab you any time, bowel cancer.”

Conclusions

Our team demonstrated that improvements in Indigenous health, in this case, cancer screening, are more likely to be achieved if Indigenous people are involved throughout the entire project. In addition, contextualizing projects or practices with input from Indigenous people and other key stakeholders is more likely to result in policies, programs, services, and projects that are appropriate, feasible, effective, and sustainable.

Following the successful trial, the Australian Government has developed a modified version of the alternative pathway model as an ongoing option in the NBCSP. Recent data suggest that First Nations participation in the NBCSP has increased from 23% in 2016 to 31% in 2023 [6]. The 2023 participation rate for all Australians (41%) remains unchanged from 2016.