Awareness of, responsiveness to and practice of patients' rights at Uganda's national referral hospital

Background: The realisation of patients' rights in resource-constrained and patient-burdened public health care settings in Uganda remains an obstacle towards quality health care delivery, health careseeking behaviour and health outcomes. Although the Uganda Patients' Charter of 2009 empowers patients to demand quality care, inequitable access and abuse remain common. Aim: The study aimed to assess level of awareness of, responsiveness to and practice of patients' rights amongst patients and health workers (HWs) at Uganda's national referral hospital, Mulago Hospital in Kampala. Methods: A three-phase cross-sectional questionnaire-based descriptive survey was conducted amongst 211 patients, 98 HWs and 16 key informants using qualitative and quantitative data collection methods. The study was conducted in May-June 2012, 2.5 years after the launch of the Uganda Patients' Charter. Results: At least 36.5% of patients faced a challenge regarding their rights whilst seeking health care. Most of the patients (79%) who met a challenge never attempted to demand their rights. Most patients (81.5%) and HWs (69.4%) had never heard of the Uganda Patients' Charter. Awareness of patients' rights was significantly higher amongst HWs (70%) than patients (40%) (p < 0.01). Patients' awareness was associated with education level (c2 = 42.4, p < 0.001), employment status (c2 = 33.6, p < 0.001) and hospital visits (χ2 = 3.9, p = 0.048). For HWs it was associated with education level (χ2 = 155.6, p < 0.001) and length of service (χ2 = 154.5, p <0.001). Patients feel powerless to negotiate for their rights and fear being discriminated against based on their ability to bribe HWs with money to access care, and political, socio-economic and tribal status. Conclusion and recommendations: Awareness of, responsiveness to and practice of patients' rights remains limited at Mulago Hospital. There is a need for urgent implementation of an integrated multilevel, multichannel, patient-centred approach that incorporates social services and addresses intrinsic patient, HW and health system factors to strengthen patients' rights issues at the hospital.