An exploration of the impact of living with systemic lupus erythematosus on the family members

Abstract

This study’s aim was to examine the holistic implications and biopsychosocial impact of Systemic Lupus Erythematosus (SLE) on the sufferer as well as their families. Interviews were held with six participants who were family members of sufferers and who were chosen through purposive sampling. The interviews were analysed through Reflective Thematic Analysis. Findings stated that being diagnosed with SLE is a challenging journey and diagnosis can bring about various reactions from sufferers and family members. SLE can result in various harmful physical effects such as rashes, fatigue and chronic pain, often leaving family members helpless to relieve these symptoms for their loved ones. Results showed that SLE can create anxiety, stress and worry on the family unit and can contribute to a decrease in social life and an increase in social exclusion for the whole family. Refraining from outdoor activities to maintain symptoms was the most common adjustment. Participants experienced an increase in dependency which resulted in an emotional impact. Nonetheless, family support turned out to be multifaceted; ranging from physical to emotional. Society still, however, carries with it various misunderstandings regarding SLE manifestations which affect both the sufferers and their families. Sufferers remain resilient and strong in adversity which must have been encouraging for families as well. Families eventually learnt to cope but it was evident that a hyper-focus was placed on the sufferer and personal needs and self-care of the family were often neglected, potentially leading to burnout and extreme stress. These findings can influence future research where focus is directed towards more families of SLE sufferers so as to create more awareness. From the results, it can therefore be concluded that family units of individuals suffering with SLE are affected in various aspects of life due to this condition.