Study Highlights Support Shortfalls for People with Lupus
Researchers interviewed six people with lupus from the Lupus Clinic at Washington University to better understand their experiences of being diagnosed and living with the disease. The subjects were between the ages of 26 and 46 and had been diagnosed with lupus at least two years prior to being interviewed.
Four overarching themes emerged from the interviews regarding their health‐related quality of life: 1) ambiguity, inconsistency, and lack of lupus symptom predictability; 2) communication challenges with family, friends, and/or partners and health care providers; 3) desire for validation from family, friends, and/or partners and health care providers; and 4) problematic aspects of social support.
The investigators conclude the research reveals potential impact of informational and appraisal support from family, friends, and physicians, as well as to the impact of public awareness campaigns on health outcomes and their implications with both intervention and research. In particular, interventions need to recognize the unique experiences of individuals with lupus, particularly regarding the ambiguity and uncertainty they experience. Within this context, interventions may need to consider developing the capacity of individuals with lupus to obtain informational and appraisal support within informal networks and enhancing physician skills in providing information and validation to individuals with lupus.
Lupus Foundation of America Summer 2018 Finzi Fellow Jennifer Ra, who is an author of the study, explains why this study is important to people with lupus: “Given these data, it is clear that patients with SLE do not have sufficient resources and skills to cope with eroded social support. This suggests to us that a retooling of the existing services used to provide support, whether in person or in a virtual form (i.e. internet), is required. We are currently developing these new resources to better address the most pressing needs and concerns that patients with SLE have.”
The Lupus Foundation of America provides education and support services – collaborating with experts to provide clear, easy-to-use information, programs, resources and support. Learn more about the Foundation’s programs and support services.