Background/Purpose:   Social support is instrumental in the mental and physical well-being of people with systemic lupus erythematosus (SLE).  Research has demonstrated that strengthening social ties can potentially reduce the negative influences of biology, genetics and environment.  For instance, positive social integration has been found to be associated with both reduced mortality and improved health outcomes in people with SLE.  This study assessed the social support needs among a socioeconomically disadvantaged cohort of African American women with SLE and investigated the ways in which a low-cost high-impact chronic disease self-management program (CDSMP) met these needs. 

Methods:   Participants were validated SLE patients receiving care at a lupus clinic at a public hospital.  Qualitative data were gathered via focus groups with 27 of the 45 participants who completed the CDSMP, and with one-on-one interviews with two CDSMP leaders.  The purport of focus groups and interviews was to gain insight into the acceptability of the CDSMP and the relevance and usefulness of its components.  In addition, we surveyed participants regarding the number of close relatives and friends, and CDSMP satisfaction. 

Thematic analysis methods were used to analyze qualitative data; codes were developed using the data and the study’s theoretical framework, including Cohen’s definitions of social relationships and resources.  Descriptive statistics were used to analyze survey data. Data sources and methodologies were triangulated. 

Results:   Six key themes emerged that depicted the types of social support needs: mental health (stress, depression, coping), personal empowerment (motivation), person-centered (care, “self-love”), interpersonal relationships, communication, and physical health (exercise, nutrition, pain management, stress).  Survey data showed an average CDSMP satisfaction score of 4.8 (range 4 [agree] to 5 [strongly agree]).  The most frequent memorable program opportunities were learning, personal support, and interpersonal interactions, respectively.  There was no significant change in the numbers of close relatives and friends before and after the program.  The emotion- and problem-focused channels of the CDSMP offered the supportive resources to satisfy participant needs.  The data and methodological triangulation demonstrated a consistency across data sources and approaches.    

Conclusion:   This qualitative study provided a greater understanding of the role of social support among African American women with SLE and the ways in which the CDSMP might help develop, enhance and utilize supportive resources.  Healthy social relationships were found to have significant impact in SLE women’s ability to cope with stress and self-manage this disease. The influences of stress were revealed in both the mental health and physical health themes.  The CDSMP offered the resources needed to enhance resilience, healthy behaviors, and overall well-being.

---

« Back to 2014 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/bridging-the-social-support-needs-gap-for-african-american-women-with-systemic-lupus-erythematosus-through-the-chronic-disease-self-management-program/