Māori and Pacific Whānau Experiences of Recurrent Rheumatic Fever and Unexpected Rheumatic Heart Disease in New Zealand.

Project summary

In Aotearoa, rheumatic fever (RF) remains a significant health problem with persistent ethnic, social and demographic inequities. Nationally, Māori and Pacific people have the highest rates of RF, recurrences of RF, and incidences of rheumatic heart disease (RHD). Despite these disparities, little is known about the lived experiences or the persistence of these inequities for Māori and Pacific people. This Ministry of Health funded research aimed to address these knowledge gaps to inform health-service improvements.

The study explored Māori and Pacific whānau experiences and understandings of rheumatic fever and rheumatic heart disease from 2015 to 2016. The research applied a qualitative kaupapa Māori research framework in addition to talanga and kakala Pacific research methodologies. Data were collected using whānau interviews with 38 Māori and Pacific whānau (n = 80), six focus-group interviews with 24 secondary prophylaxis providers and nine semi-structured interviews with other health care providers (HCPs) who worked in RF/RHD contexts. In total, 113 people participated in the study. The research was undertaken in seven North Island District Health Board (DHB) areas of Aotearoa: Northland, Waitematā, Auckland, Counties Manukau, Waikato, Hutt Valley, and Capital and Coast.

When reviewing whānau experiences of their pathways through health care, from the onset of symptoms until their eventual diagnoses, systemic failures became apparent within Aotearoa’s health system, including the inability of health care services to meet the complex living contexts of whānau, which contributed to the development of recurrent RF (RRF), recurrent hospitalisations for RF (RHRF) and RHD. Protective factors that reduced the risk of recurrence of RF and RHD included whānau advocacy and support, good rapport and communication between whānau and health care professionals and good communication and referral pathways between HCPs both within and between DHBs.

This research describes the broad impacts that RF, RRF and RHD experiences have on Māori and Pacific whānau. Key barriers and facilitators of pathways to health care and to the management of RRF and RHD are described. This report outlines recommendations for improving RF, RRF and RHD health systems and services, for improving the management and prevention of RF, RRF and RHD and for increasing RF and RHD understanding and health literacy.

Primary Investigator:

Dr Anneka Anderson

Collaborators and Named investigators:

Alison Leversha

Malakai Ofanoa

Gemma Malungahu

Hannah Burgess

Julie Wade

Suamalie Naisali

Allyn Sims

Briar Peat


Health Research Council project grant


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