Northland District Health Board Research Report: Whānau experiences of the diagnosis and management of Acute Rheumatic Fever for tamariki in Te Tai Tokerau, Aotearoa

Abstract

Rates of Acute Rheumatic Fever (ARF), a preventable disease which can develop into Rheumatic Heart Disease (RHD), are decreasing in most developed countries. In Aotearoa/New Zealand however, ARF remains a significant health problem with persistent ethnic, social and demographic inequities. Māori children between 5-15 years of age in Te Tai Tokerau (Northland) have some of the highest ARF rates nationally. Our study explored whānau experiences of ARF, including pathways to and through ARF diagnosis and treatment and aimed to support more appropriate and relevant interventions for Māori living in Te Tai Tokerau. The study applied a qualitative Kaupapa Māori research design that included participant observations, whānau interviews, and individual, semi-structured interviews with 10 whānau groups (36 participants) who resided in Te Tai Tokerau at the time of the research. ARF impacted on financial status, employment and education of whānau and resulted in whānau experiencing significant emotional, social and economic stressors. The principal pathways to reducing these stressors included the presence of whānau support, and good rapport, communication and continuity of care with healthcare professionals. Recent ARF health promotion campaigns, media coverage and discussions from health care professionals sometimes created cultural deficit explanations of ARF that were internalised by participants, eliciting additional anxiety and conflict for whānau. Within the primary care setting, inadequate throat swabbing and/or antibiotic prescribing in conjunction with experiences of health service-related discrimination and racism were barriers to improving ARF outcomes for whānau. Based on our findings we suggest that health services need to employ an integrated support service for ARF prevention and care that promotes youth and whānau centered approaches. We recommend the implementation and regular evaluation of cultural safety training and greater emphasis on whakawhanaugatanga/rapport building between health practitioners, clients and their whānau across the health sector. To avoid further stereotyping and to improve ARF interventions, we suggest that health promotion campaigns target the underlying structural causes of ARF rather than focusing solely on ethnicity and behaviour. Finally, we recommend that a quality of improvement process is implemented for the management and utilisation of sore throat guidelines within Northland’s primary health care services.