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

Hilary Barker, John G. Oetzel, Nina Scott, Michelle Morley, Polly E. Atatoa Carr, Keri Bolton Oetzel

Acute 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. This 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." Barriers 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. This 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.