Patient–provider perspectives on self-management support and patient empowerment in chronic care: A mixed-methods study in a rural sub-Saharan setting

Abstract

Aim: To explore how provision of self-management support to chronically-ill patients in resource-limited settings contributes to patient empowerment in chronic care. Design: Concurrent descriptive mixed methods research. Methods: A survey of 140 patients with chronic conditions administered at four time-points in 12 months. We conducted 14 interviews and four focus-group discussions with patients (N = 31); 13 healthcare provider interviews; and observations of four patient-support group meetings. Data were collected between April 2016 - May 2017 in rural Malawi. Qualitative data were analysed using a thematic approach and descriptive statistical analysis performed on survey data. Results: Healthcare professionals facilitated patient empowerment through health education, although literacy levels and environmental factors affected self-management guidance. Information exchanged during patient–provider interactions varied and discussions centred around medical aspects and health promoting behaviour. Less than 40% of survey patients prepared questions prior to clinic consultations. Health education was often unstructured and delegated to non-physician providers, mostly untrained in chronic care. Patients accessed psychosocial support from volunteer-led community home-based care programmes. HIV support-groups regularly interacted with peers and practical skills exchanged in a supportive environment, reinforcing patient's self-mangement competence and proactiveness in health care. Conclusion: For optimal self-management, reforms at inter-personal and organizational level are needed including; mutual patient-provider collaboration, diversifying access to self-management support resources and restructuring patient support-groups to cater to diverse chronic conditions. Impact: Our study provides insights and framing of self-management support and empowerment for patients in long-term care in sub-Saharan Africa. Lessons drawn could feed into designing and delivering responsive chronic care interventions.