3) Experience Not Validated
Poor communication with both physicians and loved ones can lead a patient to feeling invalidated. Although some of this may result from the disease process itself, respondents said their own lack of sharing about the disease made it difficult for people to validate their experience.
“In particular, the general public does not understand that SLE does not just involve having a symptom, but that it is a disease in which there is variability of symptom presentation. Respondents felt this lack of awareness, coupled with the variety of symptoms with variable severity, made people in their social network not believe them and provide validation,” the study says.
Being denied validation that their disease and its symptoms were real, respondents developed a sense that they could not rely on others for help when needed, significantly deteriorating their social networks.
4) Problematic Aspects of Social Support, Including Role Changes
Respondents reported receiving support they perceived as not useful. They also reported changes in social roles that impaired their ability to provide support to others and changed their self-identity. One respondent noted well-meaning friends and family believed they were aiding them by advising against doing activities that might exacerbate their symptoms, but that this created a barrier to maintaining relationships. “Respondents noted that changes in their ability to fulfill previous social roles was challenging,” the study says.
Dr. Kim and Mr. Leung undertook the study along with Elizabeth Baker, PhD, a professor of behavioral science and health education at Saint Louis University’s College for Public Health and Social Justice in St. Louis, Mo., whose career has focused on applying community-based participation research approaches to understand how social determinants of health, such as social support, influence health outcomes. “[Dr. Baker’s] expertise enabled us to more deeply understand the patient’s perspective, providing a richness to the data set,” Dr. Kim says.
Historically, public health officials facilitate supportive partnerships, but for these partnerships to succeed, Mr. Leung says, there must be buy-in from physicians, community organizations, other academics and patients alike.
Although a variety of organizations formed both by patients themselves (e.g., Kathleen Arntsen’s Lupus and Allied Diseases Association) and nonprofits (e.g., the Lupus Foundation of American and the ACR) have implemented programs to address the information gap and enhance awareness of the presence and impact of social support erosion in SLE, patients still say social support erosion is a problem. “This suggests that current efforts need to be revamped to better address our patients’ concerns,” Dr. Kim says. “How this will be implemented will be challenging.”
Possibilities include further developing both in-person support groups and web-based or mobile apps. Tools such as the Duke classification system facilitate actionable discussions between patients and their rheumatologists. Ultimately though, Dr. Kim says, the rheumatologist must help their patient identify and refine what needs are not being adequately addressed, because the patient likely has the closest relationship with their provider regarding their SLE.
According to Mr. Leung, there has not been a lot of involvement of social science/public health in the SLE world until the past two decades. “Additionally,” he says, “clinical research often does not involve patient perspectives in generating research questions, so the areas of research may not always align with aspects of disease most important to patients.”
From a clinical standpoint, the biggest takeaway, Mr. Leung adds, is the importance of true empathy and effective communication during the medical visit, and the importance for rheumatologists to reflect on how their interactions with patients impact patient quality of life.
“What we saw in our work in SLE specifically is that even the act of making the patient feel heard is both desired and an unmet need among our patients,” he says.
Renée Bacher is a frequent contributor to publications on health and medicine, and a longtime member of the American Society of Journalists & Authors.
What Patients Say …
“I just break down sometime[s]. [The rheumatologist] asked me these asinine questions. But the answer I give is not good enough for [my rheumatologist]. It’s not what [my rheumatologist] wants to hear. [My rheumatologist says to me] ‘Oh no, you shouldn’t have that [those symptoms].’ But I do.”