Background/Purpose : Research on SLE and social support has often focused on the total amount of support provided. However, studies also report that some individuals feel under-supported whereas others feel too dependent on others. This study examined: 1) perceived support needs and support received for different domains (e.g., work, household activities) and types of support (instrumental, emotional and informational); 2) perceived concordant and discordant support; and 3) the relationship of support satisfaction with well-being (depression, life satisfaction, meaning of illness, illness intrusiveness) in women with SLE.

Methods : Women with SLE were recruited from the University of Toronto Lupus Cohort and completed a web or paper-based survey. Demographic (age, education), clinical (pain, fatigue, disease activity), and psychological perceptions (Center for Epidemiologic Studies Depression Scale (CES-D), life satisfaction, positive meaning of illness, illness intrusiveness) data were collected. Five domains of support were assessed (work/school, family, recreation, finance & household) along with 3 types of social support (instrumental, emotional & informational). Congruent and discordant support perceptions were created by examining needs and receipt for support, as well as support satisfaction.  Separate analyses of variance (ANOVAs) examined differences in support and well-being within each domain and for each type of support.

Results : A total of 163 women with SLE, aged 50.7±16.1 years, with mean disease duration 21.9±13.7 years & mean disease activity ±3 months 2.4±2.6 on a 10-pt VAS responded. Participants reporting unsatisfactory support in at least one domain represented 47.8%, 43.1% & 53.9% of the sample for instrumental, emotional and informational support, respectively.

Although many women reported congruence between support needed and received, women often reported being under-supported in at least one domain of life. Few women reported being over-supported or dependent on others. In the work/school domain, depression and illness intrusiveness scores were significantly greater for those who viewed any type of social support as unsatisfactory compared to those receiving satisfactory support (all p-values < 0.01).  Life satisfaction and meaning of illness scores were also significantly lower for those who reported dissatisfaction with their instrumental, emotional or informational support (all p-values < 0.001) in the work/education domain. Similar findings were found for other domains.  

Conclusion: Previous research has often focused on the amount of support received. This research highlights that support needs vary and it is dissatisfaction with social support that often arises as a lack of congruence with support needed and received, not the amount of support, that is associated with well-being. These findings have implications for interventions. Further research, especially longitudinal studies, are needed to examine changes in support and well-being.

« Back to 2015 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/evaluations-of-social-support-are-associated-with-well-being-outcomes-in-women-with-systemic-lupus-erythematosus-sle/