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More about the research

Research Team: Jerik Leung, BA; Jennifer Ra, BA; Alfred H. Kim MD, PhD; and Elizabeth A. Baker PhD, MPH
Institutions: Washington University School of Medicine, Division of Rheumatology, Saint Louis University, College for Public Health and Social Justice

“...Not Having the Real Support That We Need”: Patients’ Experiences With Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support 

The patient experience of living with lupus is not well understood by clinicians or others in the research world. The goal of our work was to try and shed some light in this area. We chose to use a qualitative approach and conducted several open-ended interviews with individuals living with lupus. The main benefit of this qualitative approach is that it allows for new ideas to be generated organically by the respondent (in this case someone living with lupus) as opposed to confining responses to a set of discrete questions (such as a survey). These interviews are often guided by a set of questions but the respondent is given the space to drive the conversation, discussing ideas related to the initial questions that are most relevant to them.

The interviews focused primarily on patients’ paths to diagnoses and main obstacles in their everyday lives that they associate with their lupus. Out of these interviews, it became clear that poor social support was a primary area of concern that largely is unaddressed through the conventional clinical appointment and that ineffective communication with healthcare providers and family/friends was a fundamental driver of patients experiencing poor social support. Patients often felt like they were unable or others were unwilling to receive information or patients’ descriptions of how their lupus was affecting them which, in turn, made them feel misunderstood by both their health care providers and their friends/family. An illustrative example of this breakdown in social support is the communication between patients and their health care providers about medications. Patients often felt like they tried to explain how a medication was affecting them (e.g. side effects, whether or not the medication made them feel better) but often encountered resistance or outright invalidation if the way the medication was affecting them did not align with what the health care provider expected.

Using the findings described above as a foundation, we are currently developing a web-based intervention which will deliver both information and skill-building activities (such as a communication skills training modules) tailored for anyone affected by lupus (patients, friends/family of patients, health care providers etc.) that will hopefully begin to address some of these deficiencies in social support. 

This work has been supported by funding from Rheumatology Research Foundation, Washington University Institute of Clinical and Translational Sciences, Lupus Foundation of America, and Washington University Office of Undergraduate Research.

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