Review finds common themes in experience of adults living with lupus

Lupus Foundation of America

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A recent review of lupus quality of life studies found five common themes that describe the experiences of adults living with lupus. Using a method called thematic synthesis, Dr. Allison Tong of the University of Sydney and her associates from Australia were able to group the responses of nearly 1,400 people from 46 studies into five concepts:

  1. restricted lifestyle
  2. disrupted identity
  3. societal stigma and indifference
  4. gaining resilience
  5. treatment adherence

Healthcare providers can now use these themes to develop and expand patient-focused care and support services that will improve health and treatment outcomes.

Each theme included several common experiences or perspectives of people living with lupus.  Restricted lifestyle related to factors that interfere with daily activities and mood. These include pervasive pain, debilitating fatigue, mental deterioration, disruptive symptoms that develop over time, and having to postpone parenthood due to anxiety about risks of pregnancy complications. Disrupted identity resulted from the uncertainty or emotional burden of lupus. Factors included challenges of obtaining a diagnosis, uncertainty over the future progress of the disease, feelings of being a burden to others, hopelessness, heightened self-consciousness due to changes in appearance, fear of rejection by family and friends, and feelings of guilt or belief that the illness is punishment for an unhealthy or immoral lifestyle. Societal stigma and indifference developed when others trivialized the illness, when patients felt ostracized socially, or when family and friends became overprotective or intrusive.

Two themes included positive responses. Gaining resilience was built on optimism acquired when patients accepted their limitations and developed positive attitudes to cope with their new reality. Emotional and physical support offered by family, friends and doctors also helped people with lupus to live a ‘normal life’. They felt more in control and empowered when they remained active and socially engaged. Being informed and involved about the impact of lupus, along with the mutual understanding of others who shared similar experiences of living with the disease, was found to be important to gaining resilience. Treatment adherenceimproved when people believed the medications they were prescribed were having a positive effect on preserving health, while good rapport with doctors boosted adherence as a show of respect and trust.  Staying on medication regimens became a factor when patients began to doubt the medication’s effectiveness or when financial burden interfered with their decisions. 

The investigators conclude that education, psychosocial (offering social and emotional support) and self-care programs will help to improve the mental resilience of adults with lupus so they can develop better methods to cope with the disease, advocate for themselves, and increase their participation in activities of daily living. These factors will help people with lupus achieve better treatment and secure the best possible quality of life.

Experiences and perspectives of Adults Living with SLE: Thematic Synthesis of Qualitative Studies
Sutanto, B., Singh-Grewal, D., McNeil, H. P., O'Neill, S., Craig, J. C., Jones, J. and Tong, A. (2013)
Arthritis & Rheumatism, 65: 1752–1765. doi:10.1002/acr.22032
Epub 2013 April 22