Rheumatic fever, which can cause long-term heart damage and death, has all but disappeared from developed countries. Yet rates among Māori and Pacific children in Aotearoa New Zealand are comparable to some of the highest in the world, at 8.0 per 100,000 and 16.6 per 100,000 respectively.
The disease is a preventable autoimmune response to untreated streptococcus (strep A) infections. Rheumatic fever reduces life expectancy by about 15 years, and on average 159 people a year die from rheumatic heart disease.
Health guidelines recommend that patients receive penicillin injections every three to four weeks for at least 10 years to prevent repeat episodes, which increase in severity. However, on average 50 patients are hospitalised each year with recurrences of the disease.
The new study, led by Dr Anneka Anderson from the University of Auckland’s Faculty of Medical and Health Sciences, is part of a larger piece of research funded by the Ministry of Health to understand what is influencing recurrences.
Researchers interviewed 80 Māori and Pacific patients and their whānau about their experiences with the follow-up injections, as well as 33 health professionals providing this service.
“We found mismatches between rheumatic fever services and community needs, which are exacerbating health inequities for rheumatic fever and rheumatic heart disease,” says Dr Anderson, a senior lecturer in Te Kupenga Hauora Māori/The Department of Māori Health, which is responsible for teaching, building capacity and capability, and undertaking research in Māori health.
Three kinds of barriers came up repeatedly: racism and other interpersonal issues, inflexible delivery and a lack of age-appropriate care for adolescents.
One hospital-based paediatrician told researchers: “The institutional racism…I think you have to be deaf, daft and blind not to spot it on a regular basis in our hospitals.”
Patients described being called ‘coconuts’ or treated with contempt because of their skin colour. One patient said: “[B]ecause I was brown and she [nurse] was white, from day one… I could feel that she had problems with me…I just don’t think they care about us…because when I see them with Pākehā they’re all right. [They] would have a laugh [with Pākehā patients], but as soon as they come back to me their faces change and everything.”
Patients reported feeling dehumanised and receiving rough handling, including quick, painful injections dubbed “jab and go” by one participant. A mother was so distressed to see her child being washed harshly, she decided to stay in the hospital and tend to her care herself. “In the shower, oh my goodness. If you know the child is sore and in pain, you don’t be rough for them,” she told researchers.
Disregard for cultural safety was another feature: nurses touching the heads of Māori patients without their permission, male doctors asking young Pacific girls to expose their chests for medical examinations without an adult family member present.
Inflexibility around when and where the injections were given, and disconnection across DHBs was another common barrier. Some services assumed patients had a permanent home address and/or a fixed work place where health professionals could visit, but many patients and their families moved or travelled frequently, and some were homeless.
One Auckland participant reported: “Families who are living out of cars are getting looked down on…you have all these other issues going on that make you barely able to function as a parent or a person.”
In some areas, patients had to travel to a clinic or hospital for their injections, which was difficult for those without cars or money for petrol, or with work and family obligations.
The third barrier centres on healthcare not being tailored to adolescents’ needs, even though the majority of people receiving the injections are in this age group. Young adults often become ‘lost to’ the health system when they leave school, and there is no formal pathway from paediatric to adult services.
In contrast, researchers identified features of care that was experienced positively by patients and whānau and that encouraged patients to keep up their injections. These included flexible, community-based care; good communication and rapport; efficient information-sharing and referrals between paediatric and adult services, and between DHBs.
The study authors concluded: “To improve secondary prevention of rheumatic fever, services need to address underlying…causes of inequity such as personal and institutional racism and ageism within the service model, and the Government needs to confront racism and address broader issues of equity in housing, employment and income.”
Their specific recommendations include:
- A national register for rheumatic fever to co-ordinate care across places and life stages (well-managed registers in other countries have been shown to improve health outcomes, lower costs and help identify best practices)
- Stronger links between health and other social service providers, such as housing
- DHBs to provide rigorous cultural safety training and evaluation for health professionals, taking on board feedback from patients
- Resources and services tailored for adolescents, including training for health professionals
“Alongside the negative experiences, our participants also shared stories of sensitive, respectful, patient-centred care. These stories highlight the strengths that we must build upon if we are truly to get to grips with this debilitating but preventable disease,” says Dr Anderson.
The other researchers were Dr Alison Leversha, Dr Malakai Ofanoa, Dr Bria Peat, Dr Julie Spray, Hannah Burgess, Gemma Malungahu, Julie Wade, all from the University of Auckland; and Janine Ryland from the Ministry of Health.
Australian and New Zealand Journal of Public Health: Mismatches between health service delivery and community expectations in the provision of secondary prophylaxis for rheumatic fever in New Zealand.