Emotional experiences and challenges faced by patients with systemic lupus erythematosus who attend a support group in Ghana

Abstract

Systemic lupus erythematosus is a disorder in which a person’s immune system attacks the tissues and organs of the body, causing inflammation, damage, and dysfunction. Challenges associated with systemic lupus erythematosus include cognitive and behavioural changes as well as problems with perceived quality of life. It affects mainly women between the ages of 15 and 45 years. This study explored the lived experiences of adults living with systemic lupus erythematosus in Accra, Ghana. The study employed a qualitative research approach where 11 systemic lupus erythematosus patients were purposively recruited from Accra. Data were collected through one on one in-depth interviews using a semi-structured interview guide. Data collected were analysed using interpretative phenomenological analysis. The findings of the study revealed two main themes: Challenges living with systemic lupus erythematosus and Emotional experiences of systemic lupus erythematosus patients. Participants reported physical, financial, fertility challenges, struggles with medications, difficulty explaining the condition, and memory lapses as challenges. Emotional experiences reported include depressive feelings, sadness, fear, suicidal ideation, worry, dislike of the condition (systemic lupus erythematosus), and hope. These findings imply that participants are prone to psychological or psychiatric disorders if their emotions are not managed appropriately. The outcome of this study offers suggestions to policymakers and other organisations involved in the care and management of people with chronic conditions to adopt and effectively implement a multidisciplinary approach in health care by taking into consideration the mental health of persons living with systemic lupus erythematosus and other chronic conditions.