i060 SLE in Africa: the patient’s perspective

Abstract

Background: Lupus is a chronic, multisystem, autoimmune disease of unknown aetiology affecting predominantly young women of reproductive age. The condition affects individuals' physical, psychological and social health with resultant limitations of physical functioning and disrupted social life. Though common in women of black ancestry in Europe and the United States of America, lupus is believed to be rare in black Africans. There is a paucity of data on living with and the management of lupus from the African continent. Aim: To explore patients' perspectives of living with lupus in Kenya. Methods: A qualitative study that drew on the principles of constructivist grounded theory approach was conducted between August 2013 and June 2015 in two rheumatology clinics in Nairobi. Purposive and theoretical sampling techniques were employed. Data were collected through in-depth face to face interviews using an interview guide with open-ended questions. Interviews were transcribed verbatim and inductively analysed using the constant comparative method. Findings: Twenty-one patients aged between 19 to 56 years with a disease duration ranging between 2 to 7 years were identified. The individuals' perspectives revealed that living with lupus in Kenya was full of challenges. Five interrelated categories explained the perspectives of the participants: naming the illness; cultural beliefs, practices and prejudices; going round the system; resources for managing life with lupus and a shadow of myself. Diagnosing lupus was difficult in Kenya due to various health system deficiencies. Some patients delayed initial help-seeking. Some patients also had beliefs regarding supernatural causation of the condition, due to a lack of understanding about the illness, with resultant use of traditional remedies and experience of stigma from those around them. The findings also revealed that lupus care was costly and difficult to access due: healthcare funding structure in Kenya, inadequate resources, lack of integrated care and some patient related factors, like lack of economic and social resources. Families bore a heavy burden in terms of economic and social resources. The illness disrupted patients' lives in various ways. However, they attempted to reconstruct the disruptions with variable success. Conclusion: Data from the patients revealed that living with lupus in Kenya is full of challenges. Understanding structural and social processes which influence the experiences may assist with informing future strategies that can be utilised to improve the care and experience of patients with lupus.