FormalPara Key Points

  • Accessible, high-quality, and culturally responsive health information is essential to optimal and equitable cancer care.

  • There is a lack of health information specifically for Aboriginal and Torres Strait Islander people across the cancer care continuum.

  • A new measure of the cultural responsiveness of health information was developed and used to assess health information in cardiovascular health and cancer, lung cancer screening, and gynecological cancers.

Accessible information for people affected by cancer is a fundamental element of optimal cancer care [1]. Information about cancer and the availability of preventive and treatment services may increase engagement with services, reduce anxiety, and improve outcomes [2]. A recent survey of adult cancer patients in Western Australia identified that the greatest informational needs relate to treatment options and side effects, cancer types and diagnoses, and prognosis and survivorship [3]. Among Aboriginal and Torres Strait Islander people, the most common unmet informational need relates to the purpose of diagnostic tests and the effects of cancer treatment [4].

Health literacy refers to the cognitive and social skills required to access, read, understand, and action health information [5]. Low levels of health literacy are associated with reduced engagement with and uptake of health services and poorer health outcomes [5]. Developing accessible, readable, understandable, and actionable resources for all segments of the population is vital.

It is estimated that approximately 80% of Australians seek health information online [6]. In Australia, it is recommended that print resources are written at a Grade 8 reading level or lower [7], to help ensure equitable access to information across cultural, language, and socioeconomic backgrounds [8]. However, Australian health information is typically written above a Grade 10 level [9] and most of this information lacks actionable advice [10]. Good health information should be relevant and respectful to populations with the greatest need [11]. Given that cancer care and outcomes are worse for Aboriginal and Torres Strait Islander people than other Australians [12], the co-design of culturally responsive and high-quality cancer information resources addressing the unique needs of Aboriginal and Torres Strait Islander people is needed.

Several existing health literacy tools assess the quality of health information resources, including readability (e.g., the Flesch Reading Ease (FRE) [13] and Simple Measure of Gobbledygook (SMOG) [13]) and understandability and actionability (e.g., Patient Education Materials Assessment Tool (PEMAT) [14]). However, a validated tool to assess the cultural responsiveness of consumer information resources for Aboriginal and Torres Strait Islander people is lacking, and, to our knowledge no such tool exists for any Indigenous or Tribal population internationally. Here, we outline three case studies of cancer information resource evaluation and/or development for Aboriginal and Torres Strait Islander people affected by cancer.

Case Study 1: Assessment Tool for the Cultural Responsiveness of Cardiotoxicity Information Resources

There is growing evidence that chemotherapy, radiation therapy, and targeted systemic therapies can adversely affect cardiovascular structure and function [15]. Cancer patients with preexisting cardiovascular disease are at increased risk of treatment-related cardiotoxicity [16]. Aboriginal and Torres Strait Islander people are more likely to have preexisting cardiovascular disease at the time of cancer diagnosis [16].

An advisory group for cardio-oncology convened by the First Nations Cancer and Wellbeing Research (FNCWR) Program at the University of Queensland (UQ) identified a critical lack of information for Aboriginal and Torres Strait Islander patients and their families. In response, we conducted a comprehensive gray literature search [11] and identified 17 print-based, cancer treatment-related cardiotoxicity resources published by Australian health authorities. Most resources contained limited information on this topic and only one [17] was assessed as readable (Grade 8 reading level and/or lower using SMOG and standard/average or easier using FRE) and understandable and actionable (by scoring ≥70 and ≥ 50, respectively, on these measures using the PEMAT), highlighting the critical need for useful information for all Australians.

None of the 17 resources was designed by or for Aboriginal and Torres Strait Islander people. In the absence of a validated or co-designed measure, Indigenous and non-Indigenous members of the UQ FNCWR Program, with input from the advisory group, devised a guide using seven criteria to assess the cultural responsiveness of information resources (Fig. 16.1). To ensure its validity, the group recommended that at least two Aboriginal and/or Torres Strait Islander people conduct and discuss the assessments. In this evaluation, Aboriginal and/or Torres Strait Islander (n = 3) and non-Indigenous (n = 1) staff independently assessed the 17 resources. They found only 1 of the 7 criteria present (i.e., weblink or contact details for a translation service) and this criterion was identified in only 7 of the 17 resources; however, it was unclear whether the translation services included Indigenous languages.

Fig. 16.1
A listicle with 7 points for assessing the cultural responsiveness of information resources.

Assessment guide to culturally responsive information resources for Aboriginal and Torres Strait Islander people

Full size image

This assessment guide provided a starting point to systematically assess the cultural responsiveness of information resources. However, working with Aboriginal and Torres Strait Islander people to co-design and validate a tool to guide development of culturally responsive resources is still urgently needed.

Case Study 2: Lung Cancer Screening

Lung cancer is the leading cause of cancer-related deaths worldwide and, in 2022, accounted for 7% of Australia’s total cancer-related deaths [18]. Aboriginal and Torres Strait Islander people are approximately two times as likely to be diagnosed with and die from lung cancer than other Australians [12]. Lung cancer screening programs aim to detect lung cancer early to improve outcomes. Nine countries have already implemented national or regional lung cancer screening programs (Canada, China, Croatia, Czech Republic, Poland, South Korea, Taiwan, United Arab Emirates, and the USA) [19], and, in May 2023, the Australian Government announced plans to introduce a national lung cancer screening program by mid-2025 [20].

To address persistent inequalities, the design of Australia’s new lung cancer screening program must meet the needs of Aboriginal and Torres Strait Islander peoples. This includes developing culturally responsive screening information and education resources. To learn from other countries, the UQ FNCWR Program conducted a comprehensive gray literature search of consumer-focused resources from countries with existing programs. Of the 86 resources identified, four (4.7%) were designed for Indigenous peoples. These four varied in format and health literacy quality, and only one (Fig. 16.2) met readability, understandability and actionability criteria (Table 16.1).

Fig. 16.2
A pamphlet titled Lung cancer screening. It provides information about how to get screened, American Indians, and Lung cancer, the best time to catch lung cancer is when you are feeling well, the risk factors of lung cancer, why get screened, and the screening process.

American Indian Cancer Foundation double-sided flyer on lung cancer screening for American Indian and Alaska Native peoples, which met criteria for readability, understandability, and actionability

Full size image
Table 16.1 Lung cancer screening resource assessment
Full size table

Key Design Findings

All four resources were reviewed by a panel of six Aboriginal and Torres Strait Islander staff from UQ to identify elements for consideration in the design of a new draft resource for Aboriginal and Torres Strait Islander people. The panel was asked to share its perspectives regarding the look and feel (font, spacing, colors, visuals, and design) and content and scope (topics, depth, length, and word choice and structure) of the resources.

The staff panel preferred informative resources that reflected cultural values. For example, an Indigenous Elder pictured alone was seen to undermine culturally safe healthcare. Similarly, while a picture of an Indigenous family was appreciated, it failed to capture the importance of multigenerational family and Elders. Panel members also highlighted the value of relatable, empowering, and actionable plain language that connects cancer screening to cultural values (e.g., honor and family).

The staff panel advised that easy-to-read text, use of white space and cultural designs, natural and earth colors (e.g., green), and culturally relevant images enhanced the look and feel of information resources. In terms of content and scope, the panel suggested that resources that were comprehensive in scope but simple in delivery included affirming messaging (e.g., “be aware, take action”), and those that used plain, empowering, actionable, and culturally respectful language were most useful. The staff warned against the use of dense text, small font, white or blue color schemes (these were seen as “too clinical” or “cold, sickly”), mainstream graphics, and complex jargon or vague language.

Key Cultural Responsiveness Findings

Using the seven-criteria assessment guide for cultural responsiveness of health information for Aboriginal and Torres Strait Islander people (Fig. 16.1) [13], the staff panel made five recommendations:

  1. 1.

    Print materials should include informative images representing Aboriginal and Torres Strait Islander people (patients, families, healthcare workers) and reflecting cultural values. Messages that align with cultural values, such as engaging in cancer screening as a way to honor one’s family, ancestors, and self, are valued. Additionally, references to cultural practices and ceremony are welcomed, such as practical advice on incorporating cultural practices into cancer screening (e.g., cleansing rituals).

  2. 2.

    Lung cancer screening resources should contain information and statistics indicating the relevance and significance of lung cancer for Aboriginal and Torres Strait Islander people and communities.

  3. 3.

    The authentic and thoughtful use of Indigenous art and visual elements is recommended. It is essential that this art is created by an Indigenous person to represent the intended audience and the knowledge being shared. It is also good practice to name the artist and their country, and tell the story of the art, to avoid tokenistic practices of Indigenous involvement and to ensure acceptability.

  4. 4.

    Respectful, strengths-based language is essential. Words should be carefully chosen to avoid overly complex language (“doctor talk”) while avoiding talking down to Indigenous people and repeating healthcare system patterns of condescension.

These insights are contributing to the UQ FNCWR Program team’s ongoing co-design of a new lung cancer screening resource for Aboriginal and Torres Strait Islander healthcare providers and consumers across Queensland.

Case Study 3: Gynecological Cancers

Aboriginal and Torres Strait Islander people experience a higher burden of gynecological cancers than other Australians [12]. Additionally, female Aboriginal and Torres Strait Islander cancer patients report a higher unmet need for information and communication than males [4]. This is particularly important in the face of rapid change in cervical cancer prevention recommendations. A review was conducted to determine the availability, understandability, actionability, readability, and cultural relevance of gynecological cancer-related resources for Aboriginal and Torres Strait Islander consumers, families, and caregivers [21].

A comprehensive Google search and targeted website search of leading gynecological cancer organizations identified 16 resources, including a flip chart, posters, webpages, videos, brochures, and information sheets. Resources were assessed for understandability and actionability using PEMAT [14], for readability using SMOG [13], and for cultural responsiveness using the seven-criteria assessment guide (Fig. 16.1) [11]. The latter assessment was conducted independently by four Aboriginal staff (all women) in the UQ FNCWR Program. Through discussion, the assessors determined a final consensus rating for each item. Resources relating to cervical cancer were also checked to ensure that screening and human papillomavirus (HPV) vaccination recommendations were consistent with current clinical recommendations.

Most resources were assessed to be understandable and actionable, and almost all print resources (n = 11/13) met reading level recommendations of Grade 8 or lower [21]. Most resources (n = 14) focused on cervical cancer prevention through screening and HPV vaccination. Only three resources conveyed information relating to diagnosis, treatment, or survivorship of a gynecological cancer and these resources related to cervical, uterine, and ovarian cancers. Cervical cancer prevention resources aligned with current clinical guidelines for screening and vaccination. However, older, outdated versions of four of the resources were still easily accessible.

All resources met at least one criterion for cultural responsiveness, although none met all criteria. Three resources met six of the seven criteria. The most frequently met criterion was for the use of strengths-based and respectful language. Few resources provided translation into Aboriginal and Torres Strait Islander languages or provided evidence of the involvement of Aboriginal and Torres Strait Islander people in resource development leadership, governance, or design. Additionally, most resources did not include an Aboriginal and Torres Strait Islander–specific contact for further information or support.

Although the resources were generally understandable, actionable, readable, and moderately culturally relevant, the findings highlighted a dearth of resources relating to non-cervical gynecological cancers and information relating to diagnosis, treatment, and survivorship. Furthermore, none of the resources presented gynecological cancers as a cancer group. A resource containing signs, symptoms, prevention, and diagnosis information shared by gynecological cancers would benefit community members.

The findings indicate a need for high-quality, accessible gynecological cancer information developed by and for Aboriginal and Torres Strait Islander people relating to all aspects of the cancer continuum and including all gynecological cancer types.

Conclusion

Accessible, high-quality, and culturally relevant health information is an important aspect of optimal and equitable cancer care. Two of the three evaluations presented in this chapter highlight a lack of resources designed specifically for Aboriginal and Torres Strait Islander people; the exception was the case of HPV vaccination and cervical screening information.

An assessment guide designed by the authors evaluates the cultural responsiveness of existing and new health information resources for Aboriginal and Torres Strait Islander people. The guide has been used to evaluate existing resources (case studies 1 and 3) and to qualitatively inform the co-design of a new resource (case study 2). These steps support researchers and health services in the design of more culturally responsive cancer information resources for Aboriginal and Torres Strait Islander people, thus contributing to improved health literacy and health outcomes. This guide may be applied to initiatives internationally to improve cancer outcomes for other Indigenous peoples.