Honors College Thesis
 

The Rare Covid Experience: Systemic and Health Factors, Coping, and Support Among Adults With Rare Diseases During Covid-19

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https://ir.library.oregonstate.edu/concern/honors_college_theses/q237j0482

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  • Objective: There are currently 6,000-7,000 recognized rare disorders, affecting approximately 1 in 10 Americans. While each rare disease is unique, the experience of having a rare condition is relatively common. It is this common experience of having a rare disease during the Covid-19 pandemic that we aim to represent with this present study. Method: We used an inductive qualitative analysis technique to analyze the responses of 9 open-ended questions from our 759 participants, representing 231 unique rare diseases. Results: At the end of our analysis, we grouped responses into 20 codes, which were further consolidated into 3 themes: systemic and health factors, coping, and support. One of the most common experiences of the rare disease community during Covid-19, according to our study, is reduced access to healthcare. Our results also show a clear link between support and coping; those who have the necessary support could cope better during the pandemic, and vice versa. Finally, many participants hoped that Covid-19 would highlight inequalities, especially among the rare disease community, both in intangible ways such as greater understanding, and more tangible ways such as policies aimed to improve the quality of life of the rare disease community.
  • Keywords: rare disease, Covid-19, healthcare, support, coping
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