Date of this Version
Systemic lupus erythematosus (SLE) is a prominent, yet under-studied autoimmune condition that is both life limiting and potentially life threatening and affects more than one million Americans, primarily women. Despite this, the disease continues to go undiagnosed and unmanaged, leading to more severe outcomes of the disease process. Though there is growing recognition of the importance of social behaviors in improving health outcomes, particularly family communication and sense-making, there is a paucity of research aimed at understanding the experience of SLE and how women make sense of the disease in family contexts. This exploratory sequential mixed methods project is framed in the over-arching theory of communicated narrative sense-making (CNSM, Koenig Kellas & Kranstuber Horstman, 2015). Grounded in the CNSM framework of retrospective storytelling and guided by Frank’s (2013) typology of illness narrative types and McAdams’ (1993) conceptualization of narrative tone, Study 1 employs qualitative methods to explore the illness narrative plotlines that animate the communication of women with SLE. It further explores the family communication behaviors that women describe as characterizing their SLE experience. Study 1 found six SLE narrative plotlines (i.e. ambivalent life-as-normal, ambivalent chaos, contaminated life-as-normal, ambivalent quest, contaminated restitution, and redemptive quest), four family communication behaviors (i.e. openness, avoidance, confirmation, and disconfirmation), and three SLE family myths (i.e. harmonious, abandoned, battle). Study 2 builds from these findings to integrate the qualitative findings into the quantitative strand of this research project and to quantitatively examine relationships between the SLE narrative plotlines and SLE family myths and measures of health and well-being as well. Study 2 found that narrative sense-making, both the individual SLE narrative plotlines and the gestalt SLE family myths, had implications for physical health, mental health, and family satisfaction in SLE. The implications for this study as a foundation for the development of interventions for family members, patients, and physicians working and living within the context of SLE are discussed.
Advisor: Jody Koenig Kellas