Knowledge and perceptions of gynaecological cancers of Pacific women in Aotearoa New Zealand

Aotearoa New Zealand is a multicultural country that allows individuals to identify with multiple ethnicities. Ethnicities are categorised into six main groups: European (67.8%), Māori (Indigenous peoples of Aotearoa; 17.8%), Asian (17.3%), Pacific peoples (8.9%), Middle Eastern/Latin American/African (1.9%) and Other (1.1%).¹ Māori and Pacific peoples share ancient whakapapa (genealogy) and cultural ties through Te Moana-nui-a-Kiwa (greater Oceania ancestral connections).² Pacific peoples in Aotearoa are associated with, and descended from, the Indigenous populations of Pacific Island countries, with 17 distinct Pacific ethnic groups in Aotearoa.³ Despite this diversity, there are shared worldviews and values.⁴

Significant health disparities exist, with both Māori and Pacific peoples having poorer outcomes across several health indicators, including cancer, compared with other ethnicities.^5,6 In response to poor health outcomes in Pacific peoples, the Ministry of Health – Manatū Hauora launched Te Mana Ola: The Pacific Health Strategy.⁷ Poor cultural competency contributes to poor health outcomes,⁸ whereas knowledge of traditional or complementary medicine increases patient engagement.⁹

The gynaecological cancer disease burden on Pacific women living in Aotearoa is worse than for other ethnicities.^6,10 Globally, Samoa has the world’s highest mortality (9.3/100,000) and the world’s second highest rate of ovarian cancer (14.2/100,000).¹¹ The main risk factors for developing ovarian cancer are age, obesity, lack/low parity and genetic factors,¹² with late detection and challenging diagnosis contributing to poor survival.¹³ Early treatment of ovarian cancer can improve the 5-year relative survival rate by 63% over late-stage detection,¹⁴ but women must first be aware of the disease. Awareness of gynaecological cancers and, specifically, knowledge of ovarian cancer symptoms in Pacific women across Aotearoa are largely undetermined.

Our study was designed using the principles of Pacific co-design to gain insight into the current knowledge and research interests of Pacific women living in Aotearoa, with a focus on specific questions regarding gynaecological cancer and traditional/alternative medicine. Our aims align with one of the five key areas of the 2023 Te Mana Ola strategy—“Better understanding the needs of Pacific peoples and communities”.⁷

Methods

Ethics and consent

Ethics approval for this study was obtained from the University of Otago Human Ethics Committee for Health (H21/101). Written informed consent was obtained from all participants.

Criteria

Inclusion criteria: all adult women (≥18 years) who identify as Pacific peoples living in Aotearoa. Exclusion criteria: unable to provide informed consent.

Ethnicity

Ethnicity was self-identified using the New Zealand Census questionnaire (2013), which allows for multiple ethnic affiliations.

Study co-design

A study-specific questionnaire was developed in consultation with experts in obstetrics and gynaecology, cancer research and the study population—members of PACIFICA Inc. (a non-governmental organisation for Pacific women residing in Aotearoa, established since 1977, with 420 members reported in 2021).¹⁵ Pacific methodologies, in particular the frameworks Le Vā (relational space)¹⁶ and Kakala (five-stage Tongan co-design framework: teu [preparation], toli [data collection], tui [data analysis], luva [report and dissemination], mālie [evaluation] and māfana [final evaluation]),¹⁷ underpinned the co-design, rollout and dissemination of the survey results to participants and stakeholders. Pacific and Māori terms and their translation are shown in Appendix Table 1.

Survey

The foundation of the survey was based on a recently published study on cancer research priorities in Aotearoa¹⁸ and divided into four sections. The first section collected socio-demographic data on age, ethnicity and cancer status. Questions relating to health providers, cancer research interests and knowledge of gynaecological cancers were grouped together as the second section entitled “ALL CANCERS”. The third section contained queries relating specifically to “OVARIAN CANCER”. The top ovarian cancer symptoms were identified by surveying symptoms on four Aotearoa-based cancer websites and four international cancer websites. The top five ovarian cancer symptoms featured on all websites, and the top 11 featured on at least six websites. These symptoms were confirmed by a gynaecological surgeon (PHS). The final section contains free text. Translation was offered in Samoan, Tongan and Cook Islands Māori languages. No translations were requested.

Recruitment

Participants were recruited via PACIFICA Inc.¹⁵ between 4 August 2021 and 20 May 2022. Social media posts (Facebook, Facebook Messenger) and emails were used to publicise the study, and to invite potential participants. The study was promoted (ABT) at meetings/community gatherings of Pacific women.

Data collection

Nationwide data were collected using a self-administered questionnaire via an online URL created with the Research Electronic Data Capture (REDCap) system,¹⁹ with the option of paper copies. To ensure participant privacy and data sovereignty, all participants were de-identified, and survey data were collected and managed using REDCap hosted at the University of Otago.

Analysis and statistics

The first three sections were analysed using quantitative analyses and statistics. Specifically, descriptive statistics were used for categorical variables with GraphPad Prism 9. The D’Agostino-Pearson test was used to test the normality of data, and the Mann–Whitney U test was employed for non-parametric analysis to compare between groups; statistical significance was p<0.05. The final section (open-ended question) was analysed using thematic analysis.²⁰ Themes were elucidated from the responses by inductive analysis with a semantic approach. Data were coded without a theoretical or analytic interest, and themes were identified by the patterns in the semantic content of written matter. Data were analysed separately by two researchers (ABT, AF) and, subsequently, themes were agreed upon.

Results

Demographics of participants

A total of 150 respondents (n=148 online and n=2 paper copy) accessed the survey. Of those, six were excluded due to repeated data, one did not officially consent and 49 accessed the site but did not complete the survey. A total of n=94 individual questionnaires were included in the final analysis (Appendix Figure 1).

All participants were adult females and identified with at least one Pacific group. Ethnic distribution largely reflected the demographics of the Pacific population of Aotearoa. Most participants identified as Samoan, their proportion being approximately 20% higher than reported nationally³ (Table 1). Tongan and Cook Islands Māori were well represented, albeit both by approximately 10% less than reported.³ The proportion of Māori participants was similar to the population of Aotearoa (17.4%),¹ and of those 13 respondents, two identified as solely Māori (Table 1). Many responders (43.6%) identified with more than one ethnicity, similar to the Pacific population of Aotearoa,³ with a total of 146 ethnic affiliations recorded from 94 participants.

Participants spanned a wide age range, with one-third below 40, one-third between 40 and 50 and one-third over 50 years of age. The median age of the cohort was 45 years, older than the Pacific female population nationally³ (Table 1). A small number of participants had previously been diagnosed with cancer (11/94, 11.7%). Therefore, respondents’ knowledge of cancer for most did not come from first-hand experience of the disease and its treatment.

View Table 1, Figure 1–4.

Research priorities

Eighty-five participants rated their priorities in four broad areas of cancer research. The top priorities (priority score 4) included research into cancer prevention and early detection, with over 70% of respondents identifying these as their highest priority (Figure 1). Approximately 50% of respondents scored new cancer treatments and alternative treatments as high priority (Figure 1).

Cancer knowledge

To assess knowledge of cancers of the female reproductive system, participants were asked to list all gynaecological cancers they knew. Of 83 participants who answered this question, over 50% of participants listed breast cancer as a gynaecological cancer (Figure 2). Of the top three gynaecological cancers, 78% identified ovarian cancer and 65% identified cervical cancer, but only 17% of respondents listed uterine cancer (Figure 2). Vaginal, vulval and fallopian cancer were identified by 10% or fewer participants. Other cancers listed that were not gynaecological were bowel, bone, thyroid, leukaemia, lung, stomach, liver, skin, pancreas, lymphoma, brain, oral, anal and throat.

Pacific women’s understanding and priorities of ovarian cancer

Ovarian cancer symptoms are subtle and often missed in the early stages of the disease.¹³ To determine participants’ knowledge of the symptoms, women were asked to identify all symptoms pertinent to ovarian cancer from a list of 28 indications, of which only half were related to ovarian cancer (Figure 3). Overall, knowledge of ovarian cancer symptoms was limited. Over half the participants (55.3%) were unable to identify more than three of the fourteen clinical symptoms of ovarian cancer, and over 90% were unable to identify eight or more symptoms (Figure 3). When only considering the five most common symptoms (frequent urination, diarrhoea, bloating, fatigue and constipation), only 25% of participants could identify three or more of these.

To ascertain knowledge of ovarian cancer therapies, participants were asked to identify any methods used to treat ovarian cancer. Only 28% of participants (26/94) were able to identify at least one treatment of surgery, chemotherapy or radiotherapy.

To assess overall knowledge of ovarian cancer, a knowledge score was created for each participant. The score consisted of ovarian cancer identified as a gynaecological cancer, the number of symptoms identified and whether a treatment was identified. From this assessment, 31% of participants were “well informed” about ovarian cancer. Being well informed meant that the participant could correctly identify ovarian cancer as a gynaecological cancer, at least five ovarian cancer symptoms and at least one treatment for ovarian cancer. Most (62%) were “moderately informed”. The “poorly informed” 7% could not identify any ovarian cancer symptoms (or identified fewer ovarian cancer symptoms than other symptoms), and either did not identify ovarian cancer as a gynaecological cancer or did not identify a treatment option.

Next, participants were asked to prioritise aspects of cancer care for ovarian cancer, from very low to very high priority (Figure 4). Of the cohort, 87 responded to this question. The most important aspect of perceived cancer care to this cohort of women was maintaining quality of life, with 77% scoring it of very high importance (priority score 5). The cost of treatment, longevity and avoidance of becoming a burden were ranked as the next most important aspects, with very high importance (67%, 59% and 56%, respectively). For every Pacific group and age band, quality of life was statistically the highest-ranked priority (Appendix Table 2).

Healthcare consultation 

Participants were asked to report which healthcare providers they have consulted and which they would consider consulting. Over 90% of participants (92/94) reported accessing mainstream healthcare professionals (doctor, general practitioner, nurse), while utilisation of other types of healthcare providers was low (Appendix Table 3). Only three respondents reported solely consulting Taulasea (traditional healers) and/or alternative practitioners while not consulting with a Western healthcare provider. The “other” health providers included other women or family members, as well as spiritual healers, acupuncturists, herbalists and online information. Significantly more women would consider consulting traditional healers or alternative healthcare than those who have consulted these practitioners (Appendix Table 3).

Prior experience with cancer

As approximately 12% of participants (n=11) had indicated a diagnosis of cancer, we investigated whether these participants had different priorities and responses compared to the cancer-free remainder of the cohort (n=83). There were no differences for research priorities (p>0.05), gynaecological cancer knowledge (p>0.05), understanding or priorities of ovarian cancer (p>0.05) and priorities for healthcare providers (p>0.05). Notably, the proportions able to identify symptoms of ovarian cancer were near identical (zero symptoms 9.1% vs 9.6%, one to four symptoms 45.5% vs 45.8%, five to eight symptoms 36.4% vs 34.9%, and nine to 14 symptoms 9.1% vs 9.6%, for cancer vs no cancer, respectively).

Thematic analysis of open-ended questions

The final question on the survey was “Is there anything else you would like to tell us about cancer research?”. Almost half of the participants (n=41) responded to this question. Three overarching themes were identified as lack of education and information, cultural responsiveness and holistic therapies.

Lack of education and information

Education emerged as a major theme, with many expressing the desire to learn about cancer symptoms, diagnosis and care pathways that may help reduce stigma and support the understanding of the disease.

“More understanding is needed in the general public. People automatically think of it as a death sentence without realising that the stages of detection matter and also the type of cancer.” – P32

“Based on this survey, I don’t know enough about ovarian cancer and other cancers impacting women and I think this should change.” – P102

“That there needs to me [sic] more education around it in Pacific communities theres [sic] already a great fear of it but education and prevention is key in terms of knowing what things can contribute to having a higher risk of getting cancer and how to reduce risks.” – P51

“Need more information on symptoms and prevention.” – P60

Participants identified a major gap in that cancer information was not readily accessible.

“Information is not readily available.” – P135

“Is it taught in high schools?” – P15

Cultural responsiveness

Culture and cultural responsiveness emerged as very important aspects to both women’s cancer care journeys and their engagement with cancer research.

Women identified a clear lack of connection between themselves and the research being conducted, underscoring how research processes that are not culturally responsive can contribute to disengagement and feelings of exclusion. These findings highlight the need for cancer research approaches that are culturally grounded, relational and aligned with the lived realities of the women they seek to serve. It was expressed that Pacific women were let down by the lack of understanding from clinicians of the impact of cancer on women and their families.

“At the root of all this (entire oncology field) is a total disconnect and lack of understanding as to correlation between cancer for Pāsefika [sic] women/their families.” – P8

This disconnect was also reflected in participants expressing the need for developing culturally appropriate and language-specific resources for cancer education in the community and also for patients and families.

“Need to relate to ethnic specific groups i.e., use of languages and positive messaging/education to communities.” – P84

“Government needs to fund more culturally accessible and appropriate ways to allow [sic] our women to test rather than a smear test.” – P4

“That there needs to me [sic] more education around it in Pacific communities theres [sic] already a great fear of it but education and prevention is key in terms of knowing what things can contribute to having a higher risk of getting cancer and how to reduce risks.”  – P51

Emphasis on engaging with cancer research was highlighted as a priority, and Pacific women’s stories needing to be told.

“[Referring to participating in research] Needs to be a high priority, especially for Pacific Women.” – P130

“Greater effort and weight needs to be given to qualitative information i.e., stories by women and their families that can help assist other women and their families…” – P61

Holistic therapies

Alternative therapies and spirituality were raised as important to cancer therapy and were grouped into a holistic approach.

Participants advocated for co-operation between modern and natural medicine.

“Consult more with natural healers who have had natural herbal medicinal practices handed down and work together using science to see where changes and or reduction in spread of cancerous cells etc. can be found with the resources healers use.” – P51

Research into natural products for treatment purposes was suggested.

“I would like to see the medical industry being much more open to natural, non-invasive treatments if possible.” – P140

Participants also believed that their faith and spirituality had healing value.

“My positive mindset and my grounded/embedded strong faith and spirituality, I was able in that instance to come through in the best way possible.” – P98

Discussion

We endeavoured to assess cancer knowledge and to understand the health and research priorities of Pacific women in Aotearoa. Our study cohort is a realistic representation of Pacific peoples in Aotearoa,³ representing eight Pacific ethnic groups (the majority being Samoan), all adult age bands and many multi-ethnic identifications (41% of Pacific peoples in Aotearoa identify with two or more ethnicities).³

The top priorities for cancer research were i) cancer prevention and ii) early detection/screening, whereas the top priorities regarding care for ovarian cancer were i) quality of life and ii) cost of treatment. A recent Aotearoa study of 26 patients with breast cancer similarly reported quality of life and cost of treatment as priorities.²¹ A talanoa with 13 Pacific cancer patients also highlights gaps in the current model of cancer care for this population.²² Cancer screening was the top priority for a cohort of 205 cancer patients and caregivers in Aotearoa, whereas for their Māori participants (n=39) quality of life was the top priority.¹⁸ In the context of our Pacific cohort living in Aotearoa, where many pharmaceuticals are not government funded, it is understandable that the participants valued prevention over treatment development, as most new drugs are unaffordable or unavailable.²³

Cancer screening is complex. Rates of Pacific women utilising national screening programmes for breast and cervical cancers remain low.^24,25 Strategies to increase screening include targeted advertising campaigns to Pacific women. Novel and accessible methods, such as self-sampling for human papillomavirus, may be more acceptable for Pacific women, potentially leading to increased screening rates for cervical cancer.²⁶ Referrals to colposcopy services for positive screening tests may increase;²⁷ however, a review has highlighted that colposcopy services are inequitably accessed by Pacific women.²⁸ These systemic challenges place Pacific women in a vulnerable position for their cancer journey.

Options for healthcare choice indicated that the inclusion of alternative medical practitioners may increase Pacific engagement with healthcare. Although participants did not rank complementary/alternative treatments above other choices, free-text answers suggest that these are important, especially in conjunction with spirituality. Religion and spirituality are important to Pacific peoples and feature in Pacific health models, such as Fonofale (pan-Pacific) and Te Vaka Atafaga (Tokelauan).^29,30 The incorporation of spirituality and complementary medicine may encourage healthcare access to those who are sceptical of mainstream medicine.¹⁸ There are several factors why participants have not consulted alternative practitioners, such as availability, cost or opposition by other health professionals.³¹ More in-depth co-designed research into the reasons for Pacific peoples wanting to consult alternative healthcare practitioners, why they have not (yet) and the possible effect that access to alternative healthcare could have on their gynaecological wellbeing is required.

Health equity is defined as “Health standards of the most privileged in society should be achievable by all in that society”.⁵ Our research has highlighted gaps in Pacific women’s knowledge of gynaecological cancer, with a lack of education and information, supporting a previous study with 20 Pacific women living in Auckland.³² The effects are clear, with less than 20% of the cohort identifying uterine cancer, a disease with fivefold higher rates in Pacific women compared to NZ Europeans.¹⁰ Clinicians should therefore ensure that they have considered and discussed issues around ovarian as well as uterine cancer with their female Pacific patients. Although most participants could identify ovarian cancer, most were poorly informed about the symptoms. Only half of the respondents identified fatigue as a symptom, yet fatigue is one of the most important symptoms for people living with any cancer.³³ Our findings agree with the recently released State of Ovarian Cancer Report Aotearoa New Zealand 2025, which states that although 85% of participants had heard of ovarian cancer, only 19% could identify symptoms.³⁴ Pacific participants in that study appeared better informed with 33% able to identify ovarian cancer symptoms, although the details were not provided.³⁴

One key approach to work towards equity is addressing health literacy for the Pacific population. Educational resources rely on clear and accessible health information, and we demonstrated that this is challenging if the information is unaffordable, unavailable in the person’s first language, only available online or not accessible.³⁵ Patient experiences and listening to the voices of those affected is one of five key recommendations to reduce inequities in cancer survival in Aotearoa.³⁶ Our study participants identified a lack of reproductive cancer education/information, which may, in part, be attributed to the lack of clear and accessible health information and may contribute to inequitable outcomes. Therefore, gynaecological cancer information should be developed and disseminated in culturally appropriate ways to reach Pacific peoples effectively.

Strengths

This is the first study in Aotearoa to identify the views of Pacific women on (research) priorities for gynaecological cancer. As this study was Pacific-led, engagement was strong, leading to a good sample size with a cross-section of ages and Pacific ethnicities represented.

Limitations

Samoans were over-represented (67%) in this study, probably due to the snowballing recruitment method.³⁷ All study participants originated from the South Pacific (Polynesia), and none originated from the North Pacific (Micronesia) or Western Pacific (Melanesia), except Fiji. Future research should seek the views of specific Pacific ethnicities that were not well represented here. The survey was short and easy to complete to attract as many participants as possible. Future research should include in-depth talanoa to allow for a better understanding of participants views. Questions concentrated on ovarian cancer, with future studies expanding to other types of cancer that disproportionately affect Pacific peoples, especially uterine cancer.¹⁰ The perspective of Pacific peoples with lived experience of cancer should be explored, as this group was under-represented in our study.

Conclusion

This is the largest survey to date for Pacific women’s understanding of and priorities for gynaecological cancer. Cancer prevention, early detection/screening and maintaining quality of life were priorities. A gap in Pacific women’s knowledge of gynaecological cancers was identified, specifically early (ovarian) cancer symptoms. As early detection provides more opportunities for treatment, this may explain some of the health disparity. There is a clear need for better health literacy, improved cultural responsiveness and inclusion of holistic therapies. This work will guide future cancer research in Aotearoa.

View Appendix.