Pacific Fono: a community-based initiative to improve rheumatic fever service delivery for Pacific Peoples in South Auckland

KEYwords: Community health; Pacific health; rheumatic fever; school health; Treaty of Waitangi

Rheumatic fever is an autoimmune response to group A streptococcus infection, which mainly affects children aged 5–14 years.¹ Rheumatic fever is often preceded by group A streptococcus throat and skin infections and can cause cardiovascular inflammation leading to rheumatic heart disease and heart valve damage, which may require cardiac surgery.² In New Zealand, rheumatic fever reduces life expectancy by ~15 years and, on average, 159 people die yearly from rheumatic heart disease.^1,3

Rheumatic fever rates in New Zealand have been increasing since the 1980s, doubling between 2005 and 2010 from 1.9 reported cases per 100,000 to 3.8 per 100,000.⁴ In 2018, a rate of 3.6 per 100,000 was recorded with 168 people diagnosed for the first time.³ Māori and Pacific Peoples are disproportionately affected compared to non-Māori or non-Pacific, a disparity linked to racism, overcrowding, deprivation, increased incidence of group A streptococcus, inadequate health professional awareness, low health literacy and differing opportunities for effective health care.^5–9 Nationally, rates of first hospitalisation for rheumatic fever in 2018 show that although there has been a reduction for Māori (12.4 per 100,000 in 2009 to 8.7 per 100,000 in 2018), Pacific rates continued to increase (24.5 per 100,000 in 2009 to 31.6 per 100,000 in 2018).¹⁰

School-based throat swabbing services were a key element of the Ministry of Health’s rheumatic fever prevention programme that aimed to reduce rates by two-thirds by 2017.^11–13 Mana Kidz is a nurse-led, school-based programme that provides free throat swabbing and treatment for streptococcus throat and skin infections as part of a range of comprehensive health services to 88 primary schools in South Auckland.¹⁴ Mana Kidz is a multi-provider collaboration involving Primary Health Organisations (PHOs), non-government organisations and Public Health Nurses managed by the National Hauora Coalition, a Māori-led PHO.¹⁵

Although rates of rheumatic fever vary considerably between District Health Board (DHB) regions of New Zealand, Counties Manukau DHB (the DHB that serves South Auckland) has had the highest national rates since at least 2009.^10–12 In 2018, Counties Manukau had the highest rates of first episodes of rheumatic fever, reported at 14.7 per 100,000.¹⁰ Counties Manukau rheumatic fever trends mirror national and the greater Auckland incidence (Figure 1), with Pacific Peoples having the highest number of cases, at least twice that of Māori.^10–13

Figure 1. Cumulative monthly count of Māori and Pacific Rheumatic Fever cases, 0–19 years by year, 2012–19 in the Auckland region. Source: Auckland Regional Public Health Service (ARPHS).

Misalignments between health services and Pacific and Māori expectations of care have been identified as key barriers to rheumatic fever prevention and management in New Zealand.^5,16 Although rates of rheumatic fever are increasing for Pacific Peoples, they may have been even higher in South Auckland if not for interventions such as Mana Kidz. However, in light of the current research and the increasing rates of rheumatic fever for Pacific children in South Auckland, Mana Kidz undertook an exploratory, community-based initiative to improve its service delivery for Pacific Peoples.

In August 2019, Mana Kidz held a Pacific Leaders’ fono. ‘Fono’ can mean a ‘meeting’, ‘assembly’ or ‘council’. The fono held in this context was a meeting forum to discuss initiatives to improve rheumatic fever outcomes in South Auckland. The aim of the fono was to strengthen Pacific leadership at a governance level and to provide a culturally safe forum to discuss initiatives to reduce the effects of rheumatic fever in Pacific communities.

The fono was facilitated by a local Pacific church minister and included a presentation on the current status of rheumatic fever in South Auckland, community workshops, dinner and cultural performances. Included into the agenda were interactive workshops where written, oral and observed feedback was collected to inform the aims of the fono. Workshops are effective methods to collect local knowledge in a forum that promotes communication for particpants.^17,18 Fono attendees were seated around nine tables, each seating seven to nine people. Attendees were asked to discuss three key questions in the workshop:

1. What are the key issues, challenges and solutions for addressing rheumatic fever for Pacific communities?

2. What are the most effective ways to engage with Pacific communities around rheumatic fever?

3. What are the leadership qualities needed or required to help drive Pacific Peoples’ awareness and engagement for rheumatic fever?

Responses from attendees were written down on posters and post-it notes. Each table was also asked to give an oral summary of their responses. All written and oral presentations were in English. The oral responses were recorded in written notes by Mana Kidz staff. The written notes were collected at the end of the evening for analysis. Attendees were informed by the fono facilitator that data would be collected, analysed and disseminated to improve service outcomes. Attendees who did not wish their contributions to be recorded were asked to let facilitators know; no attendees made this request. The project was reviewed by the New Zealand Health and Disability Ethics Committee and we were informed it did not need ethical approval as it was an internal audit.

Data were thematically coded and interpreted using a general inductive approach by six Mana Kidz staff of Samoan and Māori ethnicity.¹⁹ An experienced qualitative researcher oversaw the analysis. Provisional themes identified were disseminated to fono attendees for comments and feedback. All feedback provided was positive and endorsed the themes identified.

Sixty-six people attended the fono. Attendees were from diverse backgrounds and represented many different Pacific ethnic communities (Table 1). They produced the following responses to each workshop question.

Table 1.  Description of Pacific Fono attendees

Question 1 was ‘What are the key issues, challenges and solutions for addressing rheumatic fever for Pacific communities?’. Four key themes were identified from question 1. These were: social determinants of health; cultural responsiveness; health system challenges; and education, promotion and literacy.

Social determinants of health: The most common responses described adverse effects of the social determinants of health including: poverty (particularly for not meeting the costs of living), institutionalised racism, housing availability, quality and size. Racism and stigma were strong themes reported that intersected through many dimensions of health, housing and economic status. Respondents reported a ‘stigma of shame’ deriving from stereotypes of overcrowding, poverty and poor health.

Suggested solutions provided for these challenges were to address poverty and standards of living, develop culturally responsive housing and increase funding for education.

Cultural responsiveness: Applying culturally safe, appropriate and responsive interventions was the most commonly reported solution to addressing rheumatic fever. Many respondents suggested that interventions should take place in cultural spaces such as churches. However, others noted that this could create conflict and suggested that less culturally defined spaces like group sporting activities could also be effective. Likewise, some respondents emphasised the importance of ethnic-specific initiatives, whereas others advocated for broader approaches in recognition of diverse ethnicities. Mediums such as Talanoa (Pacific conversations or story telling) were suggested as ways to communicate health promotion messages. Respondents noted that health promotion interventions need to adopt non-deficit, non-stigmatising approaches.

Health system challenges: Health systems barriers were another common theme. Respondents noted barriers to accessing health care including costs, transport and residential mobility. Discrimination and health literacy were other strong themes including: embedded racism, euro-centric health systems, lack of cultural safety, lack of knowledge around Pacific-based health services and throat swabbing guidelines.

Structural and funding delivery models of health services were also identified as key barriers and included limited workforce development for Pacific health professionals; inequities in funding, status and payment for Pacific health providers and professionals (particularly nurses); and siloed health systems.

Suggested solutions for health system challenges included: increasing funding and coverage for Pacific workforce development and school-based rheumatic fever prevention services; challenging provider bias and providing cultural safety initiatives; promoting awareness of pathways to heath treatment for sore throats and rheumatic fever; use of intramuscular injections as front-line prevention; and using mobile health clinics and Pacific family-centred health frameworks.

Education, promotion and literacy: Respondents emphasised the ‘big need’ for rheumatic fever education and awareness interventions. Limited Pacific language literacy resources were a key barrier as many resources are in English and not written in simple, direct terms. There were also concerns about denial of illness and normalisation of sore throats within families.

Implementing Pacific-led, governed and developed resources was one of the most common solutions proposed. Respondents stressed that elders, youth and communities need to be involved in the design of resources, that resources should be focused on early education, be family-based and have ‘strong direct messages’. Several respondents suggested that health promotion messages were needed that promote understandings of pathways to health care for rheumatic fever.

Question 2 was: ‘What are the most effective ways to engage with Pacific communities around rheumatic fever?’. Three key themes were identified: by Pacific for Pacific; develop a rheumatic fever campaign; and improve health services.

By Pacific for Pacific: The strongest emergent theme was that engagement had to be designed and led by Pacific People and provided to Pacific People. It was suggested that church leaders, community groups, youth and Pacific health professionals should be involved in engagement initiatives. Many respondents noted that a ‘grass roots’ community approach would be an effective engagement process. Several responded that a Pacific advisory group should be established to oversee rheumatic fever engagement. There was a range of different responses over whether engagement should be ethnicity specific or in the ‘spirit of oneness’ based on something like the South Pacific games.

Develop a rheumatic fever campaign: Many respondents suggested that engagement should be undertaken through a campaign that was cost free and easily accessed by communities. Key elements of the campaign included: having a Pacific rheumatic fever ambassador; using different forms of media (radio, television, social media); and holding highly visible community-based workshops. Respondents reported that the campaign messages should be based on the ‘stories of people with rheumatic fever’, be direct, hard hitting, thought provoking, real, use images of ‘beautiful, healthy kids’, and be fun, including humour and comedy. Respondents suggested that the messages be delivered in Pacific languages, be simple, direct, able to reach intergenerational audiences and use pictures and images.

Improve health services: The third key area that respondents reported could be effective for Pacific engagement was within health services. Respondents proposed that funded, collaborative agreements between Pacific communities and health services be used to deliver awareness messages. They indicated that such initiatives could promote Pacific trust and engagement in health services and facilitate better communication between health-care professionals (particularly general practitioners) and Pacific patients. Respondents stated that having health services adopt ‘Fonua Ola’ and other Pacific, family-centred ‘wrap around services’ could promote engagement. Some respondents proposed that having pop-up trucks to swab children’s throats and promote community awareness of rheumatic fever could be an effective engagement strategy.

Question 3 was ‘What are the leadership qualities needed to help drive Pacific Peoples’ awareness of and engagement for rheumatic fever? The three key themes identified were: culturally responsive leaders; having specific expertise and skills; and youth-driven leadership.

Culturally responsive leaders: The most commonly reported attribute of leadership was being a culturally responsive leader. Respondents felt leaders should be able to speak their respective Pacific languages, have influence, respect and connections within Pacific communities, know and actively engage with their local Pacific communities, maintain a ‘grass roots’ approach and be people-centric leaders with commitment, care and passion for working with Pacific People. Many respondents reported that culturally responsive leaders should be able to challenge the status quo and ‘choose courage over comfort’.

Having specific expertise and skills: Respondents stated that leaders need to be experts or have skills and experience in critical areas including policy, health, governance and leadership itself. Leaders were described as having to ‘hold authority’, be great communicators, be non-judgmental, have a sense of humour and be recognised as community role models in areas such as sports, music and comedy. Being innovative, creative and visionary thinkers were also attributes valued for leaders.

Youth-driven leadership: Another key attribute important for leadership was a youth focus. Respondents said that leaders need to be engaged with youth, know what youth want and draw on the experiences of people with rheumatic fever. Some suggested that leaders should themselves be young people or youth who have first-hand experience with rheumatic fever.

In response to the findings from the Pacific fono, and recommendations from a key national report on improving Pacific health outcomes,²⁰ Mana Kidz has implemented several changes and strategic planning initiatives to establish Pacific leadership and Pacific workforce development.

Two Pacific leadership roles were established in the Counties Manukau DHB Alliance Leadership Group. This group governs school-based health programmes in the region, including Mana Kidz. The Pacific leaders were nominated and voted into the leadership group by Fono attendees.

Under Te Tiriti o Waitangi (the Treaty of Waitangi), the founding document between Māori and the Crown in New Zealand,²¹ Māori are guaranteed health services and outcomes equal to that of the Crown.^22,23 Pacific Peoples, although not considered Indigenous to New Zealand, are recognised as Crown citizens and are therefore entitled to fair health outcomes and governance.²⁴ Adopting a rights-based approach to health, the National Hauora Coalition, as a Māori-led PHO, has long practised positive health outcomes via a Kaupapa Māori ‘by Māori-for-Māori approach’. This approach promotes wellbeing for Māori by ensuring services are delivered in a culturally appropriate, safe, effective and equitable manner.²⁵ Mana Kidz has seen benefits of this approach for Māori in stabilising rates of rheumatic fever and other health outcomes. However, on critical reflection of current Pacific health outcomes, and the findings from the fono, the National Hauora Coalition realised that a ‘by Pacific for Pacific’ approach is needed to decrease health inequities for Pacific People. Although the National Hauora Coalition cannot lead these initiatives because it is a Māori-led organisation, it can, and has, provided space, resources and support for Pacific leaders to establish governance groups and health service initiatives in rheumatic fever and broader health contexts. In this sense, the National Hauora Coalition is adopting a Te Tiriti-based partnership with Pacific Peoples.

The National Hauora Coalition is also committed to ensuring Pacific representation in its services, including Mana Kidz, and to further investing in workforce development for its staff and advocating for Pacific health services.

One of the most valuable lessons of this initiative was recognising the value of critical reflection about health services. The National Hauora Coalition has demonstrated strengths in its approach towards Māori health, yet recognised that more investment needs to be undertaken to see a similar improvement in Pacific health outcomes.

A second key message to be taken is the importance of good governance and collaborative, rights-based partnerships in health service planning and delivery.

The authors declare no competing interests.