Appraising a chronic stressor : a causal-comparative study exploring the impact of diagnosis & support groups in Ehlers-Danlos Syndrome.


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I focused my study on Ehlers-Danlos Syndrome (EDS). As a person with EDS, I applied an advocacy lens to my research. The two purposes of the study were to explore the differences in demographic characteristics and reported quality of life (QoL) of individuals with or without formal EDS diagnosis and examine QoL differences between individuals who participate in support groups and those who do not. I conducted a causal-comparative, quantitative, exploration-focused study. In the theoretical framework I employed Lazarus and Folkman’s (1984) theory of stress and coping. The transactional theory of stress and coping had been applied to previous research into disease populations and best suited the study’s goal of exploring impacting factors on QoL. In this study, I used the WHOQOL-BREF questionnaire as the central instrument of measurement. The WHOQOL-BREF measured QoL via domains of physical, psychological, social relations and environment. In addition, I surveyed the sample to capture descriptive statistics. Using purposive-sampling, I recruited study participants from The Ehlers-Danlos Society, which allowed for a larger sample size and recruitment of participants with EDS diagnoses along with those who had symptoms but no diagnosis. After data cleaning (n = 335), participants were included in the sample group. Overall, the sample population was highly educated, mostly female, and if at all were diagnosed in middle age. Support groups were popular among all study participants. In looking at how diagnosis impacts QoL, I found those with a formal diagnosis scored lower in the physical domain but higher in the other domains tested. No statistically significant difference was found in diagnosis-related results. Using Chi-square testing, I found a statistically significant association between diagnosis status and support group participation. Participants engaged in support groups had lower QoL scores in all four domains (physical, psychological, social relations, environmental). In the environment domain, this result was statistically significant. I inferred that additional investigation is needed on support groups and how those without diagnoses engage with them. As a result of my research, I recommend further investigation into the influence of EDS on QoL.