Perspectives of potentially eligible Indigenous Māori on a lung cancer screening programme: a qualitative study

Lung cancer is the greatest single contributor to the gap in life expectancy between Māori and non-Māori¹ (non-Māori include European, Pacific, Asian and other ethnicities). Māori age–sex standardised mortality rates for lung cancer are over three times that of non-Māori.¹ While higher rates of smoking contribute to inequities, Māori deaths from lung cancer are also associated with having a greater number of comorbidities than non-Māori, being diagnosed later and having worse experiences (including racism) in the health system.¹ Māori develop lung cancer around 6 years earlier than non-Māori, and develop lung cancer with lower smoking exposures.¹

Because lung cancer is often asymptomatic in its earlier stages, most people with lung cancer are diagnosed late and survival is low. Screening for lung cancer is important to ensure people with lung cancer are diagnosed earlier, increasing their chance of a cure. Those who are diagnosed at the earliest stage (stage 1A) have a much improved (at least 70%) 5-year survival. Screening for lung cancer has been proven internationally to be effective at reducing cancer-specific mortality in a number of high-quality trials.^2,3 While low-dose computerised tomography (LDCT) screening is increasingly accepted as an evidence-based intervention to decrease lung cancer mortality, other factors contributing to optimal implementation of screening require understanding of local contexts.⁴

Aotearoa New Zealand does not currently have a lung cancer screening (LCS) programme. Introducing a screening programme into the Aotearoa New Zealand context requires an equity focus to ensure that existing inequalities are not exacerbated. Researchers have found that LCS in Aotearoa New Zealand is feasible and likely to be cost-effective,^5,6 but ethnic-specific information is needed, including Māori perspectives on LCS, to inform future implementation.

Te Oranga Pūkahukahu: The Lung Cancer Screening Research Programme is a Māori-led approach to ensuring that a future national programme benefits Māori. The research programme centres Te Ao Māori (the Māori world) and whānau (family) experience, drawing from Kaupapa Māori approaches (research that is done with, for and by Māori).⁷ Seeking the voices and experiences of whānau Māori as the first step in programme development, then co-designing the programme itself with whānau, ensures the whole programme is built to achieve Māori health equity.

The proposed LCS process as outlined to participants involves the selection of potentially high-risk individuals, an assessment to determine individual risk, the offer of an LDCT scan to those considered high risk with shared decision making about agreeing to this offer, and then the follow-up of abnormal CT scans as required.

Methods

Kaupapa Māori research locates Māori at the centre of enquiry, aims to be of benefit to Māori, is focussed on equitable health outcomes, considers Māori world views and Māori ways of knowing, being and doing, and centres Māori aspirations. Our research focusses on a significant health issue for Māori: its goal is designing LCS that has excellent Māori participation, reduces lung cancer mortality and inequities, and is culturally safe and acceptable for Māori; and it addresses questions that are important to meet this goal. Our research was led by Māori, was done with Māori and is for Māori health equity gains.

Focus groups took the form of hui including marae protocols. This approach served to ensure that whānau attending felt welcomed, their spiritual needs were taken care of, they experienced manaakitanga, and hui were facilitated to ensure maximum participation by each person in the process. Notes of each hui were sent out to participants after each one and recapped at the beginning of subsequent hui. Facilitation of hui was supported by two Māori facilitators with health research and evaluation experience, particularly in the cancer care areas.

Eligibility

Invited focus group participants were Māori living in the Auckland and Waitematā regions, potentially eligible for LCS (current smokers, or ex-smokers who had quit within the previous 15 years and were aged between 50 to 75 years) and their whānau members.

Recruitment

Three focus group phases were held in Auckland between 15 and 29 August 2019. The phase one focus group was held in South Auckland (a home-based whānau group) with participants recruited through snowballing methods (researcher contacts in the first group). This group was predominantly made up of three whānau who could be categorised as “hard to reach”, in that their engagement with the health system was minimal (whānau who the system has failed to engage).⁸ The age range of this group was 25–55 years of age. In phase two, two groups were held at the Waitakere Hospital marae with participants recruited via an existing research database of Māori participants aged over 60 years who had participated in an abdominal aortic aneurysm (AAA) screening project and had consented to be contacted for further research. This cohort had shared risk factors (for example, smoking history) in terms of LCS eligibility. The third, and final, phase involved all participants being invited to the marae to review findings from the prior focus groups and provide feedback on the interpretation of findings. All participants in each phase were encouraged to invite whānau members to attend and participate in the focus groups.

Consent and data collection

After an initial phone call, those who were interested were sent a letter with a participant information sheet and consent form and were invited to attend a focus group session. In each phase, the hui process⁹ was used to structure the session. This process incorporated mihimihi and karakia (traditional Māori welcome, greetings and prayer) and whakawhanaungatanga (relationship building) followed by kai (food) and then discussion relating to LCS (the kaupapa). The focus group then formally concluded with closing karakia. All three focus group phases were concluded by a final karakia.

Data analysis

Field notes and recordings were undertaken at the focus groups, with data coded and organised into preliminary themes by the hui facilitators (KP and MM) and co-author SMc. Transcripts were then coded by co-authors SRC and BB. SRC grouped codes into categories and developed themes, which were informed by the earlier preliminary analysis.¹⁰

Results

Twenty-one potentially eligible Māori (10 males and 11 females) and nine whānau members took part in the focus groups.

In the third focus group phase, participants confirmed the following key themes: 1) positivity towards LCS, 2) fear of the disease and prior negative experience of the health system, 3) other barriers to screening, including access, 4) enablers for Māori participating in LCS, and 5) influences on LCS decision making. Feedback is presented in Table 1 and summarised below.

The second phase included participants who worked within the health system and group facilitators identified that these participants strongly favoured whānau knowing what was available within the health system, including screening.

View Table 1.

Positivity towards LCS

After being taken through the proposed process for LCS, in general, Māori participants were positive towards LCS and engaged with the Kaupapa. They were hopeful that it would pave the way for healthier future generations and were altruistically focussed on the future of their whānau. They were positive about the opportunity to be more informed about lung cancer and screening, including understanding the risks and benefits of screening. They were also positive about potentially getting a second chance at life through the earlier diagnosis of lung cancer.

Fear of the disease and prior negative experience of the health system

Some participants were hesitant about LCS, mainly due to fear of the disease and prior negative experiences of the health system and screening. Some of their whānau had not survived lung cancer. Some were generally distrustful of the health system, including their own doctors. They also warned about the potential of the “grapevine” to spread negative experiences.

Other barriers, including access

Access was a significant barrier to Māori participants potentially taking up LCS. This included cost, time to attend appointments and travel. Participants voiced that for Māori, getting time off work to attend the screening was problematic, as was arranging childcare. Furthermore, the inconvenience of having to attend multiple appointments requiring repeated hospital visits was another barrier. A further barrier was the stigma of being a smoker and its association with a lung cancer diagnosis.

Enablers for LCS

On the other hand, factors that could enable Māori to take part in LCS included:

Practical support

Support with transport could take the form of taxi or parking chits, transport to screening or mobile sites in rural communities. Time off work to attend screening and a “one-stop shop” arrangement where participants could address multiple health needs at one time were also favoured.

Kaupapa Māori approaches

Culturally safe practices, specifically a focus on Kaupapa Māori, were very important. Participants valued whānau-friendly processes, such as whānau support at screening and being able to take children to appointments. They also appreciated a culturally competent and kind navigator to walk alongside them. They suggested communication that was grounded in te reo Māori (Māori language) and tikanga (cultural practices), although they did acknowledge limits around eligible people’s resonance with and confidence in te reo Māori due to historical trauma and colonisation. Whakawhanaungatanga was a key aspect of any potential LCS programme. Participants said that they would respond better if those facilitating the programme took time to engage in relationship building, at initial contact as well as throughout delivery of screening services. Trust and friendliness of providers was important.

Clear, meaningful communication

Clear communication that was culturally responsive included accessible study information (written in everyday, non-clinical language) and clear explanations of risk was an enabler. Participants wished to be reassured that taking part in screening did not necessarily mean a death sentence and that there was potential for cure if caught early.

Programme messaging, awareness raising and role modelling

Programme messaging that promoted a “by Māori, for Māori” approach to LCS and that was cognisant of the connotations of specific word choice was an enabler. For example, it was felt that wording needed to be strong yet positive to encourage people to take the invitation to screening seriously while not putting them off. It was important to raise awareness among Māori of why screening was necessary. The wider community could role model screening behaviour, influencing the uptake of LCS.

Influences on decision making

Decisions to take part in LCS could be influenced by quality (detailed and factual) information; GP (general practitioner) relationships; a key decision maker within the whānau; autonomy over the decision-making process; and the invitation source. Participants valued being able to make a decision that was right for them and one they were not feeling pressured into by the way the information was framed. Some participants felt they would respond better to an invitation to participate in LCS from their GP rather than a “cold call” letter or phone call. Participants felt the key decision maker within the whānau would need to be involved in decisions for other whānau members to take part in LCS. It was therefore important to appeal to whānau units and whānau decision makers.

Discussion

This study aimed to gain an understanding of Māori perspectives of LCS through a series of focus groups to guide equity-focussed implementation. Our study has identified some of the key barriers and facilitators for Māori participation in LCS. Overall, Māori participants enthusiastically supported future LCS in Aotearoa New Zealand, with perceived benefits including being more informed about lung cancer and screening, and improving the health of future generations. Perceived barriers to screening included fear of the disease and/or a cancer diagnosis; prior negative experience of the health system and screening; stigma from the association with smoking; access barriers, such as time to attend appointments, cost and transport; as well as inconvenience. Perceived enablers of a culturally acceptable LCS programme were practical support such as transport; a “one-stop shop” health service visit that combined health appointments; culturally competent practices; clear communication; user-friendly processes; and promotion within and among Māori whānau. Participants identified a range of factors influencing a decision to participate in LCS. Anticipated barriers to LCS for Māori are suggestive of racism and echo the results of a recent qualitative review, summarising healthcare experiences of Māori within “an alienating public health system.”⁸

The equity focus of our research programme is a novel approach to LCS internationally and to other cancer screening programmes within Aotearoa New Zealand. Other national cancer screening programmes in Aotearoa New Zealand (breast, bowel and cervical) have not been designed from an equity perspective. This study’s key strength is that it describes the views of Māori who would potentially be eligible for LCS and of their whānau regarding LCS and the design of a potential LCS programme. Many of those who participated in the early focus group research have gone on to become the programme’s consumer advisory group, Te Hā Kotahi (broadly translated as “united breath”). This group meets regularly, supported by Health New Zealand – Te Whatu Ora kaumātua (respected elders), and has contributed significantly to the framing of the research programme, research questions, participant materials, logo and design, and to the name of the programme. The programme is led by a Māori principal investigator (Professor Sue Crengle) and all data are governed by Māori members of a steering group. Our results are limited by the limited demographic information we have about participants. While efforts have been taken with transcription and qualitative analysis to ensure data integrity, not all parts of the recordings were able to be transcribed clearly and where this occurred, the discussion was not included in the data analysis and results. Like all qualitative research, these results are not necessarily generalisable outside the context where they were gathered; for example, they may not reflect the views of some Māori who live more rurally.

Our work builds on other Aotearoa New Zealand co-designed participatory research with Māori that identifies enablers and barriers to diagnosis of lung cancer.¹¹ Previous research has focussed on earlier diagnosis of symptomatic lung cancer within primary care. Our research is specific to the setting of a potential national LCS programme. Commonalities between these two strands of qualitative research with Māori participants include: the importance of the GP–patient relationship (potentially either helping or hindering the diagnostic pathway); access, including the cost and availability of healthcare/services, travel and childcare; interest from Māori patients in being more informed about lung cancer; fear, and the association of a lung cancer diagnosis with a death sentence; the provision of information about lung cancer in clear and straightforward language; awareness of potential language barriers for people who only speak te reo Māori; and the importance of whakawhanaungatanga and manaakitanga, which includes taking good care of whānau throughout the cancer screening journey.¹¹

Importantly, our research fits within the international research gap specifically concerning LCS and equity, particularly for Indigenous peoples. Over the last few decades, the international evidence base for LCS has expanded, supporting the use of organised LCS programmes across varied health systems.⁴ Currently, national programmes are in place in the United States, Poland, Croatia and South Korea, with smaller-scale programmes underway elsewhere, such as those in Canada, Australia and Europe. In 2022, the United Kingdom recommended targeted LCS.⁴ A recent Lancet review summarises the LCS evidence base and identifies opportunities for optimising LCS, including tailoring screening geographically for specific populations and incorporating smoking cessation and assessment for chronic obstructive pulmonary disease (COPD) and cardio-vascular disease (CVD).⁴ The review states that “LCS programmes must focus on health equity”, and highlights that culturally safe approaches are “critical”.⁴ Other pro-equity suggestions for improving access to LCS include mobile CT scanners and offering free ride-shares to screening.⁴

Our results align closely with international evidence concerning barriers to participation in LCS: “poor awareness of LCS, concerns about the risk of false positives, distrust of the health-care system, smoking-related stigma, inconvenience, fear of a cancer diagnosis, and worries about financial cost.”⁴ Our findings add to Australian research that identifies that Indigenous barriers to lung cancer diagnosis and treatment include a lack of public transport and inadequate communication, as well as poor coordination between health services.¹² Similarly, in Scotland (the LUNGSCOT study, focussed on eligible Scottish residents rather than on ethnic inequities), barriers to engaging in LCS included fear, stigma, mistrust towards health systems and professionals and practical constraints including travel, cost, time, and competing priorities; enablers included positive messaging and the use of mobile units to improve accessibility.¹³ Cavers et al.¹³ found that LCS was broadly acceptable to participants, some of whom lived in rural and deprived areas.

Our LCS research programme also aligns with key Aotearoa New Zealand policy directives. Recent national reforms of the Aotearoa New Zealand health system have led to an Interim New Zealand Health Plan, Te Pae Tata, which prioritises equity.¹⁴ Explicitly, Te Pae Tata states, “We will be committed to achieving equitable health outcomes for Māori.”¹⁴ This includes enabling “The voice of whānau in the design and delivery of services that are culturally safe and produce equitable outcomes.”¹⁴ Health equity for Māori is a key specified outcome of the new Pae Tū: Hauora Māori Strategy 2023,  with its commitment to honouring Te Tiriti o Waitangi.¹⁵ Similarly, a key goal of the New Zealand Cancer Action Plan 2019–2029 is that “New Zealanders experience equitable cancer outcomes.”¹⁶

In Aotearoa New Zealand, engaging with Māori specifically around LCS had not been done before. Engaging with Indigenous communities from the very early stages of research or programme design is an important first step for introducing equity into the cancer screening pathway. Co-design of Te Oranga Pūkahukahu, the LCS programme, has included engagement with Māori communities, building long-term relationships, co-creating the screening pathway and its associated resources, ensuring mana motuhake (self-determination, control) and addressing key aspects of existing stigmatisation, racism and health system inequities.

A key aspect of Te Oranga Pūkahukahu is participatory involvement of Māori who are potentially eligible for LCS, and their whānau, with their input co-designing the direction and application of the research, ultimately to co-produce a national programme that ensures Māori benefit.

Co-design is becoming more common in health research, with its focus on ensuring that research is meaningful to end-users.¹⁷ Simply put, co-design means “Designing with, rather than designing for.”^18,19 Within other cancer screening programmes in Aotearoa New Zealand, Māori women have been involved in co-design in HPV cervical cancer self-testing, as part of qualitative research specifically concerning acceptability.²⁰ To a certain extent, co-design has influenced recent international qualitative research (Canada, United States, Australia) with Indigenous populations that has sought to understand Indigenous perspectives and experiences of cancer screening programmes, including cervical,^21,22 breast^23–25 and colorectal.²⁶ These studies have expanded the evidence base about enablers and barriers to Indigenous participation in cancer screening.

Cancer Australia has recently engaged in LCS co-design workshops with Aboriginal and Torres Strait Island populations in their national programme preparation;²⁷ however, there is little published evidence specifically concerning LCS and Indigenous co-design. A few qualitative studies discuss LCS research in the context of vulnerable populations and equity, including the use of co-design for smaller programme aspects such as learning materials for health professionals,²⁸ patient-centred research questions²⁹ and providing feedback about the design of LCS, specifically the pathways for engaging people with a biomarker blood test.³⁰

As a result of participatory involvement in our study, Māori participant feedback from the three focus group phases has directly influenced the development of Te Oranga Pūkahukahu. The focus group findings reported here, alongside surveys (to be reported elsewhere) are the foundational aspects of the programme, which is now offering LDCT to Māori participants.³¹ The focus groups and subsequent survey have informed the central research question of a randomised controlled trial, currently underway, that compares two different invitation approaches to LCS—via GPs or central hub.³¹

Māori are generally supportive of LCS; however, a number of factors need to be taken into account to enable participation in the screening pathway. Our findings lend support to the implementation of LCS in Aotearoa New Zealand.