Individuals’ perspectives on the impact of living with lupus in Kenya

Abstract

Background: Lupus is a chronic, autonomic, multisystem disease that predominantly affects women of child bearing age. Lupus has both physical and psychosocial impact on affected individuals. There is paucity of data on the impact of living with lupus in Kenya.
Objective: To explore how living with lupus has affected the individuals’ lives.
Design: A generic qualitative approach with principles of constructivist grounded theory.
Setting: Two rheumatology clinics in Nairobi, one private and one public health facility. Ethical approval was obtained from the relevant institutional ethical committees.
Methods: Participants were identified using purposive and theoretical sampling techniques. Face-to-face interviews were conducted. Interviews were transcribed verbatim and analyzed inductively using the constant comparative method.
Results: The study identified a key category of “a shadow of myself” and two sub-categories; i.e. loss of self and biographical disruption. The findings revealed that the illness disrupted individuals’ lives in various ways. However, they attempted to reconstruct their disruptions with variable success.
Conclusion: The study revealed that living with lupus was disruptive to individuals who previously had ordered lives and the need for support.