Graduate Thesis Or Dissertation
 

Stress, Social Support, and Life Satisfaction Among Adults with Rare Diseases

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  • In the US, a disease is classified as rare if it affects less than 200,000 individuals a year. Despite considerable similarities, individuals with rare diseases (RDs) report worse life quality and satisfaction with life (SWL) than those with common chronic conditions. One potential avenue to increase SWL is through improving social support, though this has received little systematic investigation in RD populations. Thus, the first aim of the current study was to examine the relationship between social support and SWL among adults with RDs. Specifically, we examined whether different types of social support are directly related to SWL (main effects model) or related through acting as a buffer to stress (stress-buffering hypothesis). We hypothesized that each type of support would be a unique predictor of SWL, with companionship support predicting our outcome over and above the other types, and that emotional and informational support would buffer the negative effects of stress on SWL. Analysis revealed emotional support, but not informational or tangible, was a unique predictor of SWL, and that companionship predicted SWL over and above other factors. No support was found to the stress-buffering hypothesis. The secondary aim was to examine how emotional and companionship support could best be given to this population. We conducted a thematic analysis to examine how, in participants own words, these types of support could be given to these individuals. Themes identified for companionship support included Connecting with Others, Improving Accessibility, and Awareness/Educating Others. Themes identified for how emotional support could be given included through Mental Health Professionals, Network-Members, Improving Accessibility, and Awareness/Educating Others. Results suggest both emotional and companionship support are beneficial to individuals with RDs regardless of their stress levels. Support groups, conferences, therapy sessions, and providing information about RDs to others were all mentioned within themes as the best avenues to support, suggesting potential avenues for intervention.
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