A report behind studying increases in rheumatic fever in Māori and Pacific people has uncovered claims of racism and ‘rough handling’ of patients suffering from the disease.

The Ministry of Health funded report, Māori and Pacific Whānau Experiences of Recurrent Rheumatic Fever and Unexpected Rheumatic Heart Disease in New Zealand, was written by academics at the University of Auckland’s Faculty of Medical and Health Sciences.

The research explored Māori and Pacific whānau experiences and understandings of rheumatic fever (RF) and rheumatic heart disease (RHD).

People in the study complained of problems in the health system including racism, being called names like ‘coconut’ and rough physical handling from some health professionals. Some people even said they preferred to inject their own doses of Bicillin, a long-acting formulation commonly used for the secondary prevention of rheumatic fever, rather than go through the pain of receiving it from a health professional.

In total, 113 people participated in the study. The research was undertaken in seven North Island District Health Board (DHB) areas: Northland, Waitematā, Auckland, Counties Manukau, Waikato, Hutt Valley, and Capital and Coast.

From 1996 to 2005, RF rates significantly increased for Māori and Pacific children, but decreased among New Zealand European children. Between 2005 and 2010, the rate of RF doubled from 1.9 reported cases per 100,000 to 3.8 per 100,000. The majority of cases occur in the northern and central North Island and in pockets around the Wellington region. Rates among Māori and Pacific children between 5 and 14 years of age are disproportionately high. Pacific children are over 50 times and Māori children over 30 times more likely to get ARF than New Zealand European children.

The study’s lead author, Dr Anneka Anderson, of the University’s Te Kupenga Hauora Department of Māori Health, said one of the largest complaints from the whānau who participated involved claims of racism and a lack of cultural safety and understanding.

“Whānau described how personally mediated racism and a lack of cultural safety were factors that negatively influenced their treatment and clinical experiences. Racist encounters, particularly within hospital contexts, were experienced by many whānau in the study,” Dr Anderson says.

“Participants were subjected to verbal racism—such as being called ‘coconuts’—and to being treated differently by medical professionals because of their socially assigned ethnicity.”

Whānau also described how, while in hospital, they often received ‘rough treatment’ during their check-ups, when being washed or showered and when being given quick, painful bicillin injections or, as one person described them as ‘jab and go’ injections. One caregiver was particularly concerned that bicillin was being delivered into the patient’s buttock while he was asleep.

Some whānau described how the lack of cultural safety of some health care providers created negative health care experiences, including nurses touching the heads of Māori patients without their permission and male doctors asking young Pacific girls to expose their bare chests for medical examinations. Participants explained how such experiences left them feeling scared, vulnerable and disrespected in the sense that their social values and sense of security had been compromised. Lack of cultural safety was also experienced by whānau during home visits.

“There is no evidence to support Māori and Pacific people having an increased genetic susceptibility to RF. So the figures reflect social, political and economic influences that result in socioeconomic deprivation, overcrowded conditions, an increased incidence of streptococcal infections and differing opportunities for appropriate and effective health care.”

Dr Anderson says the increases in rheumatic fever among the Māori and Pacific people is concerning given the disease has largely disappeared from developed countries.

In addition to the 120 to 170 patients admitted to hospital with a new diagnosis of RF each year, a further 50 patients are hospitalised with recurrences of ARF and another 50 are admitted with an unexpected diagnosis of RHD.

Dr Anderson says many of the whānau in this study experienced complex lives that can affect their access to the health system including living in relatively deprived environments, often having to move house and living in unstable and unhealthy housing conditions.

Financial pressures associated with the complex living contexts of many whānau created barriers to accessing both primary and secondary health care services for their RRF and RHD. Common barriers were securing transport and meeting the costs of health care and medical prescription fees.

Many parents and caregivers also described experiencing anxiety and guilt as they felt they were at fault for their child’s illnesses. Whānau blamed themselves for not realising how sick their children were, for not seeking medical attention soon enough for their children and for not pushing HCPs and services ‘hard enough’ for the medical treatment of their children.

The report lists 11 recommendations to improve the situation including addressing racism, cultural safety and housing issues. The report also recommends improvements to health literacy of patients to reduce reoccurring cases of RF, and improved health promotion messages.

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