Enablers and barriers to secondary prophylaxis for rheumatic fever among Māori aged 14–21 in New Zealand: a framework method study

Abstract

BackgroundAcute rheumatic fever (ARF) rates have declined to near zero in nearly all developed countries. However, in New Zealand rates have not declined since the 1980s. Further, ARF diagnoses in New Zealand are inequitably distributed--occurring almost exclusively in Māori (the indigenous population) and Pacific children--with very low rates in the majority New Zealand European population. With ARF diagnosis, secondary prophylaxis is key to prevent recurrence. The purpose of this study was to identify the perceived enablers and barriers to secondary recurrence prophylaxis following ARF for Māori patients aged 14–21.MethodsThis study took a systems approach, was informed by patient voice and used a framework method to explore potential barriers and enablers to ongoing adherence with monthly antibiotic injections for secondary prophylaxis. Qualitative interviews were conducted with 19 Māori ARF patients receiving recurrence prophylaxis in the Waikato District Health Board region. Participants included those fully adherent to treatment, those with intermittent adherence or those who had been “lost to follow-up.”ResultsBarriers and enablers were presented around three factors: system (including access/resources), relational and individual. Access and resources included district nurses coming to patients as an enabler and lack of income and time off work as barriers. Relational characteristics included support from family and friends as enablers and district nurse communication as predominantly a positive although not enabling factor. Individual characteristics included understanding, personal responsibility and fear/pain of injections.ConclusionThis detailed exploration of barriers and enablers for ongoing secondary prophylaxis provides important new information for the prevention of recurrent ARF. Among other considerations, a national register, innovative engagement with youth and their families and a comprehensive pain management programme are likely to improve adherence to ongoing secondary prophylaxis and reduce the burden of RHD for New Zealand individuals, families and health system.

Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease

“…It's in our family." Pregnant Aboriginal women quoted in Belton et al, 2016 [9] The New Zealand literature gave more depth to descriptions of the impacts of power differentials, describing a lack of trust, feeling judged, having to 'push' to have throat swabs taken and diagnostic failures even when family members suspected ARF [37,40,41].…”

Transforming institutional racism at an Australian hospital

“…The well-documented disparities in health outcomes for racial groups in some societies, even when socioeconomic status is taken into account, have been attributed to institutional racism in many studies. [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17] A recent critique of the development of racism theory over the preceding 50 years contends that the opportunity to elaborate an overarching theory of racism with cultural, institutional and individual levels has been lost with today's theoretical offerings only providing 'one-dimensional and reductionist explanations of race relations'. 18(p574) Regardless of this lack of strategic theory development, the diverse literature covers key questions relevant to health care about institutional racism including: is it caused by the personal racism of individual employees or the processes, structure and governance of an organisation; is it a deliberate action or inaction of society or its key organisations; can it be applied to individual organisations or is it a total societal condition; how does institutional racism deliver healthcare discrepancies; and how does resistance to eliminating institutional racism manifest?…”

Adherence to Secondary Prophylaxis Among Patients with Acute Rheumatic Fever and Rheumatic Heart Disease

“…There is an inevitable potential for systematic reviews to become outdated rapidly with the publication of new studies. Since the publication of the review by Kevat et al ., more than ten additional pertinent studies have been published, from Australia [ 11 - 13 ], Egypt [ 14 ], Fiji [ 15 , 16 ], India [ 17 ], Jamaica [ 18 ], New Zealand [ 19 , 20 ], Uganda [ 21 ] and Zambia [ 22 ].…”

“…Firstly, the findings underscore that the determinants of effective SP implementation arise at the interface of health systems and the patient milieu. Examples of factors repeatedly identified as influencing adherence include geographic remoteness and physical distance to health facilities vis-à-vis transport options [ 15 , 18 , 23 , 24 ], inconvenience to patients exacerbated by competing priorities (such as schooling or employment) and clinic wait times [ 14 , 18 ], the quality of provider-patient relationships and communications [ 23 , 25 - 27 ], fear of painful injections [ 18 , 19 , 28 ], the degree of education and disease awareness among patients (or, in the case of children, their parents) [ 14 , 19 , 27 , 28 ], and levels of support from family and friends [ 24 , 25 ].…”