Background
In New Zealand, most initial episodes of Rheumatic Fever occur in Māori and Pacific peoples aged 5-25 years. Many have some degree of long-term cardiac damage. Rheumatic Fever (RF) and Rheumatic Heart Disease (RHD) are not recognised as chronic diseases of adolescence. This research explored patient and whānau experiences of RF/RHD.
Methods
Kaupapa Māori and Pacific qualitative methodologies were employed. Whānau interviews were conducted with 40 patients and their whānau (n=80) (n=12 aged <14y, n=10 aged16-18y, n=18 aged >19y). Focus groups and semi-structured interviews were conducted with 33 health care providers (HCPs) (total participants, n=113). Data were thematically analysed using a general inductive approach with independent coding and consistency checks. Emerging themes were discussed with the rōpū kaitiaki to ensure robust cultural interpretation.
Results
Even patients with little or no cardiac involvement require more regular care than is usual for their age.
RF/RHD affected participation in activities, socialisation and overall wellbeing.
Difficulties associated with engagement with care during adolescence contributed to reduced adherence and recurrent disease.
Barriers included: relationships (peers, parents and HCPs), desire for normality and independence, no perceived benefit of treatment, need to be organised, anxiety related to RF/RHD, prophylaxis and management.
HCPs reported difficulties developing rapport, were frequently ill-equipped to cope with complex challenges, and requested training and resources to improve patient management.
Conclusions
RF/RHD meet the criteria for chronic conditions in adolescence. Age-appropriate resources and services are required, including HCP training, taking into account the cultural and psycho-social implications of living with a chronic condition, and the positive benefits of maintaining connectedness with whānau.