FormalPara Key Points

  • The limited available research on fear of cancer recurrence (FCR) in Indigenous populations indicates cultural differences in its experience and management.

  • The first study to specifically focus on FCR in an Indigenous population found that clinically significant FCR appears to be more prevalent in this population.

  • Aboriginal and Torres Strait Islander people’s experiences of FCR are likely to be impacted and amplified by experiences of racism, inequality, and mistrust in their encounters with the healthcare system.

  • Leveraging Aboriginal and Torres Strait Islander cultural strengths and providing multidisciplinary care that encourages cultural connection and supports a more holistic view of wellbeing may help mitigate FCR.

  • Culturally appropriate FCR care may be enabled by increasing the presence of Aboriginal and Torres Strait Islander staff in healthcare settings and using culturally sensitive tools to screen for FCR.

Fear of cancer recurrence (FCR), defined as “fear, worry or concern relating to the possibility that cancer will come back or progress” [1, p. 3266], is common among people living with and beyond cancer. Experiences of FCR range from minimally intrusive and transient thoughts to debilitating and enduring fears that impact daily functioning and wellbeing [1]. Low levels of FCR could be considered a normal response to the possibility of recurrence that may encourage health-promoting behaviors to reduce recurrence risk. However, a meta-analysis of FCR research largely conducted on non-Indigenous people indicates that most report moderate (40%) or severe/clinical (19%) FCR [2]. Clinical FCR is characterized by persistent, high levels of preoccupation or worry and hypervigilance or hypersensitivity to bodily symptoms lasting for more than three months and impacting daily functioning [3].

This chapter includes results from the first study specifically exploring how FCR affects Indigenous people, which focuses on Australian Aboriginal and Torres Strait Islander women diagnosed with breast cancer. The chapter provides practical suggestions for supporting Indigenous people affected by FCR. We respectfully use the phrase “Indigenous people” to refer to global Indigenous and Tribal populations and “Aboriginal and Torres Strait Islander people” to refer to the Indigenous people of Australia.

Identification, Prevalence, and Severity

A 2020 systematic review of quantitative and qualitative research evaluating FCR in Indigenous and ethnic minority people affected by cancer found that the prevalence of FCR varies considerably (14–67%), potentially due to variable measurement and underlying differences between ethnic and cultural groups [4]. For example, Hispanic people in the United States appear to experience more severe FCR, while non-Hispanic Black cancer survivors experience similar or less severe FCR than non-Hispanic Whites. However, of the 19 studies reviewed, only one evaluated FCR in an Indigenous population. This single qualitative study of Native Hawaiian women affected by breast cancer briefly noted that managing FCR is a supportive care need [5]. Therefore, there is a clear need for:

  • Further research exploring Indigenous people’s experiences of FCR.

  • Culturally relevant and specific tools to assess FCR in Indigenous populations.

Case Study: FCR Among Aboriginal and Torres Strait Islander Women with Breast Cancer

To address the paucity of evidence on FCR among Aboriginal and Torres Strait Islander people in Australia, an Aboriginal-led team partnered with Breast Cancer Network Australia (BCNA) to explore (1) FCR prevalence and levels among Aboriginal and Torres Strait Islander breast cancer survivors relative to non-Indigenous counterparts, (2) FCR qualitative experiences and coping strategies (Round 1 interviews), and (3) preferred screening and support options (Round 2 interviews) [6].

Adults who identified as Aboriginal and/or Torres Strait Islander were selected from a BCNA database of people who had volunteered to be contacted regarding research. Recruitment strategies included invitation emails, videos of Elders sharing their breast cancer stories and encouraging participation, and social media posts. Interview participants were offered a $30 gift card for their time. Consenting participants completed an online survey (approximately 15–20 minutes to complete) that included demographic and clinical information and the Fear of Cancer Recurrence Inventory (FCRI) [7]—a validated 42-item multidimensional measure comprising seven subscales (triggers, severity, psychological distress, functioning impairments, insight, reassurance, and coping strategies). FCRI items are answered on Likert scales from 0 (never/not at all) to 4 (all the time/a great deal). Scores range from 0 to 168, with higher scores indicating worse FCR. The FCRI severity subscale (also known as the FCRI-Short Form), has established cut-offs for clinical FCR (≥22/36) and subclinical FCR (≥13/36) [8].

Nineteen participants completed the survey, with almost half (42%) reporting clinically significant FCR and a further third (37%) reporting subclinical FCR. These results suggest that clinical FCR is almost twice as prevalent in this population than in breast cancer survivors generally (42% vs 22%) [2].

Survey participants were invited to participate in a follow-up semi-structured telephone interview, which further explored their experiences of FCR using open-ended questions informed by the seven FCRI subscales. Ten women took part in the first round of interviews—five reported clinical FCR, three subclinical FCR, and two mild FCR. An additional six women participated in the second round of interviews, which explored participants’ perspectives regarding FCR identification and support options. Five women from the second round provided survey data; all reported clinical FCR. Interviews were conducted by experienced female qualitative researchers, with thematic analysis of transcripts guided by Mertens’ transformative approach [9], which privileges the voices of marginalized groups to reduce inequities. Deductive coding (using FCRI subscales) preceded inductive coding to generate new themes. The perspectives of Aboriginal researchers in the team were privileged in consensus finding. Table 47.1 outlines themes, subthemes, and illustrative quotes.

Table 47.1 Themes, subthemes, and exemplar quotes: Aboriginal and Torres Strait Islander women’s experiences of fear of cancer recurrence, identification, and support
Full size table

Factors Exacerbating FCR

These qualitative findings suggest that unique aspects of Aboriginal and Torres Strait Islander breast cancer survivor experiences exacerbate FCR and may contribute to a seemingly higher prevalence of clinically significant FCR in this population (see Butler et al. [6] for further details). For example:

  • FCR induced by medical appointments may be exacerbated, owing to a mistrust of the medical system stemming from experiences of institutional racism [10].

  • The higher prevalence of comorbid chronic illnesses in cancer survivors stemming from unequal social determinants of health may make survivors more prone to hypervigilance regarding physical symptoms, which commonly trigger FCR.

  • A poorer cancer survival rate and greater likelihood of experiencing life-limiting illness within the family/community may lead to heightened concern about the inevitability and impact of recurrence.

  • FCR-related distress seems strongly linked to concerns about the impact of recurrence on the family, reflecting the central role of family and community in this culture.

Factors Mitigating FCR

We found that social interaction lessens FCR by limiting rumination or providing emotional support for concerns. While the desire to protect family and friends sometimes inhibits sharing FCR with loved ones, as seen among Native Hawaiian women with breast cancer [5], sharing experiences of cancer and FCR with other cancer survivors, friends, and, in particular, family helps women validate concerns and obtain emotional support. Healthcare professionals should support Aboriginal and Torres Strait Islander people with cancer to discuss FCR with friends/family. However, if people feel uncomfortable sharing their concerns with family/friends, they may benefit from connecting with culturally safe support groups (e.g., yarning circle), where they can share stories and get support.

There is a clear need for culturally appropriate information and resources about the cancer journey and cancer recurrence. Some women find that seeking information helps reduce uncertainty; however, this is sometimes hindered by the lack of information and support that is sensitive to Aboriginal and Torres Strait Islander needs. For instance, follow-up appointments tend to focus solely on medical issues while neglecting psychosocial issues—such as the impact of FCR on social and emotional wellbeing, which are key elements of the more holistic Aboriginal view of health [11]. More holistic care may be achieved through providing multidisciplinary care teams, including psychologists and allied health workers, who can more effectively address culturally important factors, such as the impact of cancer on family, work, and lifestyle behaviors. Activities that help Aboriginal and Torres Strait Islander people connect with culture and community (e.g., art groups), which were reported to help reduce FCR, should be integrated into care where possible. In the absence of multidisciplinary care, owing to limited resources in rural areas, timely referral to community-based organizations (e.g., Cancer Council in Australia) that provide informational, practical, and emotional support is needed.

Systematic screening for FCR may overcome the reported lack of discussion among healthcare professionals, which is an issue more broadly [12]. Participants in the BCNA study indicated that FCR screening needs to use culturally congruent language and be repeated during follow-up, with results actioned. The routine use of the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) [13] may aid in the culturally sensitive identification of FCR. SCNAT-IP was developed to accommodate the language, customs, and cultural needs of Aboriginal and Torres Strait Islander people with cancer, and it includes the item “worrying about your illness spreading or getting worse.” Study participants indicated that a brief questionnaire would be a useful prompt to discuss concerns with their healthcare team and consequently get the support needed. A follow-up assessment of those reporting FCR in initial screening with the FCRI-SF can determine the severity of FCR and inform treatment recommendations. Cultural competence training for non-Indigenous healthcare staff to increase the understanding of Aboriginal and Torres Strait Islander patients’ culture and health perspectives and the recruitment and training of more Aboriginal and Torres Strait Islander healthcare staff may further enable FCR to be raised and addressed in culturally acceptable ways.

Conclusions

There is still much to learn about FCR in Indigenous people affected by cancer. The experience of FCR is likely to be impacted and amplified by experiences of racism, inequality, and mistrust in the healthcare system. FCR may be mitigated by leveraging Aboriginal and Torres Strait Islander cultural strengths and providing multidisciplinary care that encourages cultural connection and supports a more holistic view of wellbeing. Increasing the presence of Aboriginal and Torres Strait Islander staff in healthcare settings and the use of culturally sensitive tools to screen for FCR will lead to more culturally appropriate FCR care. Further research with larger samples in different Indigenous contexts is needed to better understand the prevalence and severity of FCR and implement mitigating strategies.