A Model for Empowering Rural Solutions for Cervical Cancer Prevention (He Tapu Te Whare Tangata): Protocol for a Cluster Randomized Crossover Trial.

BACKGROUND: Maori are the Indigenous people of Aotearoa (New Zealand). Despite global acceptance that cervical cancer is almost entirely preventable through vaccination and screening, wahine Maori (Maori women) are more likely to have cervical cancer and 2.5 times more likely to die from it than non-Maori women. Rural Maori residents diagnosed with cervical cancer have worse outcomes than urban residents. Living in rural Aotearoa means experiencing barriers to appropriate and timely health care, resulting from distance, the lack of community resourcing, and low prioritization of rural needs by the health system and government. These barriers are compounded by the current screening processes and referral pathways that create delays at each step. Screening for high-risk human papillomavirus (hrHPV) and point-of-care (POC) testing are scientific advances used globally to prevent cervical cancer. OBJECTIVE: This study aims to compare acceptability, feasibility, timeliness, referral to, and attendance for colposcopy following hrHPV detection between a community-controlled pathway and standard care. METHODS: This is a cluster randomized crossover trial, with 2 primary care practices (study sites) as clusters. Each site was randomized to implement either pathway 1 or 2, with crossover occurring at 15 months. Pathway 1 (community-controlled pathway) comprises HPV self-testing, 1-hour POC results, face-to-face information, support, and immediate referral to colposcopy for women with a positive test result. Pathway 2 (standard care) comprises HPV self-testing, laboratory analysis, usual results giving, information, support, and standard referral pathways for women with a positive test result. The primary outcome is the proportion of women with hrHPV-positive results having a colposcopy within 20 working days of the HPV test (national performance indicator). Qualitative research will analyze successes and challenges of both pathways from the perspectives of governance groups, clinical staff, women, and their family. This information will directly inform the new National Cervical Screening Program. RESULTS: In the first 15-month period, 743 eligible HPV self-tests were performed: 370 in pathway 1 with POC testing and 373 in pathway 2 with laboratory testing. The positivity rate for hrHPV was 7.3% (54/743). Data collection for the second period, qualitative interviews, and analyses are ongoing. CONCLUSIONS: This Maori-centered study combines quantitative and qualitative research to compare 2 clinical pathways from detection of hrHPV to colposcopy. This protocol draws on rural community practices strengths, successfully engaging Maori from a whanau ora (family wellness) approach including kanohi ki te kanohi (face-to-face), kaiawhina (nonclinical community health workers), and multiple venues for interventions. It will inform the theory and practice of rural models of the use of innovative technology, addressing Maori cervical cancer inequities and facilitating Maori wellness. The findings are anticipated to be applicable to other Indigenous and rural people in high-income countries. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12621000553875; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12621000553875. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/51643.

Culturally Safe Neonatal Care: Talking With Health Practitioners Identified as Champions by Indigenous Families.

The burden of health inequities borne by Indigenous peoples can be overwhelming, especially when mothers and newborns' lives are at stake and health services seem slow to invest in responsiveness. In Aotearoa (New Zealand), urgent action is required to eliminate persistent systemic inequities for Maori (Indigenous) whanau (family collectives that extend beyond the household). This Kaupapa Maori (by Maori, for Maori) qualitative study aimed to explore the views of health practitioners identified as champions by whanau of preterm Maori infants. Ten health practitioners were interviewed and asked about their involvement with the whanau, their role in explanations and communication, and their thoughts on whanau coping. Interview data were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: working together in partnership, a problem shared is a problem halved, and sacred space. Collaboration between health practitioners and with whanau was important to the champions and central to their goal of enabling whanau autonomy. This was built on a foundation of connectivity, relationships, and a full appreciation that childbirth is a sacred time that is potentially disrupted when an infant is born prematurely. The values- and relationship-based practices of these champions protected and uplifted whanau. They showed that health practitioners have important roles in both the elimination of inequities and the sustaining of Maori self-determination. This championship is an exemplar of what culturally safe care looks like in day-to-day practice with Maori and is a standard that other health practitioners should be held to.

Te Ara Waiora-Implementing human papillomavirus (HPV) primary testing to prevent cervical cancer in Aotearoa New Zealand: A protocol for a non-inferiority trial.

BACKGROUND: Cervical cancer is caused by high-risk types of human papillomavirus (HPV). Testing for high-risk HPV is a more sensitive screening method than cervical cytology for detecting cervical changes that may lead to cancer. Consistent with recent evidence of efficacy and acceptability, Aotearoa New Zealand plans to introduce HPV testing as the primary approach to screening, replacing cervical cytology, from mid-2023. Any equitable cervical screening programme must be effective across a diverse population, including women that the current programme fails to reach, particularly Maori and those in rural areas. Currently, we do not know the best model for implementing an equitable HPV self-testing screening programme. METHODS: This implementation trial aims to assess whether a universal offer of HPV self-testing (offered to all people eligible for cervical screening) achieves non-inferior screening coverage (equal) to a universal offer of cervical cytology alone (the present programme). The study population is all people aged from 24.5 to 70 years due for cervical screening in a 12-month period (including those whose screening is overdue or who have never had screening). A range of quantitative and qualitative secondary outcomes will be explored, including barriers and facilitators across screening and diagnostic pathways. This study takes place in Te Tai Tokerau/Northland which covers a diverse range of urban and rural areas and has a large Indigenous Maori population. A total of fourteen practices will be involved. Seven practices will offer HPV self-testing universally to approximately 2800 women and will be compared to seven practices providing routine clinical care (offer of cervical cytology) to an approximately equal number of women. DISCUSSION: This trial will answer important questions about how to implement an equitable, high-quality, effective national programme offering HPV self-testing as the primary screening method for cervical cancer prevention. TRIAL REGISTRATION: Prospectively registered with the Australian New Zealand Clinical Trials Registry 07/12/2021: ACTRN12621001675819.

He Tamariki Kokoti Tau: Families of Indigenous Infants Talk about Their Experiences of Preterm Birth and Neonatal Intensive Care.

Maori (Indigenous peoples of Aotearoa New Zealand) bear an unequal burden of poor perinatal health outcomes, including preterm birth. An infant arriving preterm disrupts the birth imaginary of whanau (family collectives) and situates them in a foreign health environment that may not be culturally safe and nurturing. A cross-sectional interpretative phenomenological analysis of first interviews with 19 whanau participating in a Kaupapa Maori (by, with, for Maori) qualitative longitudinal study of preterm birth identified themes from their experiences and the meanings they attributed to them. Preterm birth was an emotional roller coaster, with the birth imaginary and anticipated roles disrupted as health practitioners took over the care of their infants. Whanau expressed the desire to be close to their infants, holding them, loving them, nurturing them, and emplacing them within whakapapa (genealogy, continual layering of foundations) networks. When health practitioners or hospital policies inhibited this intimacy by isolating, excluding, or discriminating, whanau were frustrated. Being familiar with hospital routines, staff, peers, infant cares, and being wrapped in wider whanau support were key for whanau coping. Whakawhanaungatanga (processes of establishing relationships) create safe spaces for whanau to be themselves. This quietens the 'storm' and returns whanau to a sense of calm, through the reclamation of their environment.

He Tapu Te Whare Tangata (sacred house of humanity): Under-screened Maori women talk about HPV self-testing cervical screening clinical pathways.

OBJECTIVE: To develop an in-depth understanding of HPV self-testing cervical screening clinical pathways for never-/under-screened Maori women. METHODS: Based on a community-based cluster randomized controlled trial in Aotearoa (New Zealand), a Kaupapa Maori (by Maori, for Maori) qualitative study enrolled Maori women who met the eligibility criteria of the HPV trial intervention (aged 25-69 years, no screen in >4 years). In total, 28 were recruited (22 had a negative test, six had a positive test and colposcopy). They were asked about their clinical pathway. RESULTS: The HPV self-test was seen as empowering and promoting bodily autonomy, although some women expressed fears or misconceptions about this new technology. While those with a negative test were relieved, for the six women who had a positive test, there were many fears, compounded by seeking out information on the Internet. When attending colposcopy, the importance of support and responsive care was emphasized. CONCLUSION: HPV self-testing has the potential to improve access to cervical screening and reduce inequities for Maori. Care must be taken in the delivery of screening and colposcopy results. Primary care and colposcopy services need to take special care with never-/under-screened Maori women to provide sensitive, responsive care, and mitigate trauma.

A call for action that cannot go to voicemail: Research activism to urgently improve Indigenous perinatal health and wellbeing.

In this call to action, a coalition of Indigenous and non-Indigenous researchers from Australia, Aotearoa New Zealand, United States and Canada argue for the urgent need for adequately funded Indigenous-led solutions to perinatal health inequities for Indigenous families in well-resourced settler-colonial countries. Authors describe examples of successful community-driven programs making a difference and call on all peoples to support and resource Indigenous-led perinatal health services by providing practical actions for individuals and different groups.

Achieving cervical cancer elimination among Indigenous women.

Achieving the World Health Organisation (WHO) cervical cancer elimination target of fewer than four new cases per 100,000 woman-years requires scaling up HPV vaccination of girls, cervical screening, and pre-cancer and cancer treatment. We reviewed data from four high-income colonised countries (Australia, Canada, Aotearoa New Zealand (NZ), and the United States (US)) to identify how each is currently performing compared to the cervical cancer incidence elimination and triple-intervention targets, nationally and in Indigenous women. We also summarise barriers and enablers to meeting targets for Indigenous women. To achieve elimination, cervical cancer incidence must be reduced by 74% in Indigenous women in Australia, and 63% in Maori women in NZ; data were not published in sufficient detail to compare incidence in Indigenous women in Canada or the US to the WHO target. Only Australia meets the vaccination coverage target, but uptake appears comparatively equitable within Australia, NZ and the US, whereas there appears to be a substantial gap in Canada. Screening coverage is lower for Indigenous women in all four countries though the differential varies by country. Currently, only Australia universally offers HPV-based screening. Data on pre-cancer and cancer treatment were limited in all countries. Large inequities in cervical cancer currently exist for Indigenous peoples in Australia, Canada, New Zealand and the US, and elimination is not on track for all women in these countries. Current data gaps hinder improvements. These countries must urgently address their systemic failure to care and provide health care for Indigenous women.

Reaching under-screened/never-screened indigenous peoples with human papilloma virus self-testing: A community-based cluster randomised controlled trial.

BACKGROUND: Indigenous women in the high-income countries of Canada, Australia, New Zealand and USA, have a higher incidence and mortality from cervical cancer than non-Indigenous women. Increasing cervical screening coverage could ultimately decrease cervical cancer disparities. AIMS: To increase cervical screening for under-screened/never-screened Maori women. MATERIALS AND METHODS: This study was a cluster randomised controlled trial. Inclusion criteria were women aged 25-69, last screened ≥4 years ago, in Northland, New Zealand. The intervention arm was the offer of a human papilloma virus (HPV) self-test and the control arm was the usual offer of standard care - a cervical smear. The primary outcome was rate of cervical screening in the intervention group compared to control in Maori, the Indigenous peoples of New Zealand. Six primary care clinics were randomly allocated to intervention or control. RESULTS: Of 500 eligible Maori women in the intervention arm, 295 (59.0%) were screened. Of 431 eligible Maori women in the control arm, 94 (21.8%) were screened. Adjusting for age, time since last screen, deprivation index, Maori women in the intervention arm were 2.8 times more likely to be screened than women in the control arm (95% CI: 2.4-3.1, P-value <0.0001). CONCLUSIONS: Offer of HPV self-testing could potentially halve the number of under-screened/never-screened Maori women and decrease cervical morbidity and mortality. These results may be generalisable to benefit Indigenous peoples facing similar barriers in other high-income countries.

The Choosing Wisely campaign and shared decision-making with Maori.

AIMS: Choosing Wisely seeks to prevent harm by reducing the number of unnecessary tests, treatments and procedures, and by promoting shared decision-making. This article scopes perspectives of Maori patients/consumers and Maori health practitioners around Choosing Wisely and explores shared decision-making between Maori and their medical practitioners. METHODS: Eight Maori consumers and seven Maori health practitioners participated in a qualitative, semi-structured, in-depth interview study with an inductive thematic analysis. RESULTS: Participant feedback spanned issues from lack of Maori participation in programme governance through to practical issues like meaningful and literacy-appropriate health messaging, traversing consumer, practitioner, organisational and health-system aspects. Feedback further focused on the patient having trust in the practitioner, a sense of autonomy and the availability of advocacy and support in the consultation. CONCLUSIONS: Despite a late campaign collaboration with Maori, Choosing Wisely New Zealand is the first of the international programmes to acknowledge the possibility that their initiative might increase inequity for Indigenous populations. This enquiry highlights the need to consult Maori early and to infuse Treaty principles and Maori knowledge and custom at every stage of the programme.

He Korowai Manaaki: mapping assets to inform a strengths-based, Indigenous-led wrap-around maternity pathway.

A research partnership between Iwi (tribal group) Ngati Pahauwera and a university-based research centre specialising in Kaupapa Maori (by Maori, for Maori) research was formed in response to an invitation from Ngati Pahauwera. The initial partnership goal was to address health inequities experienced by Maori women and infants in Te Wairoa (the home place of the Iwi), a predominantly Maori, rural region in Aotearoa (New Zealand). The research developed by the partnership is an example of a culturally responsive research methodology. Key features include: being Iwi-initiated; community identification of strengths and assets; guidance by a community steering group; contribution to local Maori research capacity; and the development of a community-led augmented maternity care pathway that is now being delivered through primary care. These features have strengthened the engagement of the Iwi, researchers and community, and provided opportunities for transformative change.

Acceptability of self-taken vaginal HPV sample for cervical screening among an under-screened Indigenous population.

BACKGROUND: Human papillomavirus (HPV), the causative agent of cervical cancer, can be screened for using self-collected vaginal samples (self-testing). This may overcome barriers to screening for Maori women who suffer a greater burden of cervical disease than New Zealand European women. AIMS: This study aimed to explore the potential acceptability of HPV self-testing for never/under-screened (self-reported no cervical screen in 4+ years, aged 25+) Maori women by Kaupapa Maori (by, with and for Maori) mixed methods, involving hui (focus groups/interviews) and survey. MATERIALS AND METHODS: Community-based researchers ran hui with women in four regions (N = 106) and supported hui participants to collect survey data (N = 397). Healthcare providers (HCPs) were also interviewed (N = 17). Hui data were thematically analysed. Survey data were analysed by age group, rural/urban, primary health organisation (PHO) enrolment, and time since last cervical screen. RESULTS: Most survey participants were PHO-enrolled (87.15%) and attended regularly (71.79%), but did not attend regular cervical screening. A desire for bodily autonomy, including whakama (embarrassment/shyness/reticence), was the most frequently cited barrier. Three in four women reported being likely/very likely to do an HPV self-test. Nine in ten women reported being likely/very likely to attend follow up if they receive a positive HPV test result. Women and HCPs in the hui emphasised the importance of health literacy, cultural competence and empathetic support. CONCLUSION: The findings indicate that with a culturally competent introduction of HPV self-testing, many currently never/under-screened Maori women would be willing to be screened and followed up if necessary. HPV self-testing has the potential to save lives.