Rare World: Investigating Social Support in Rare Disease and Common Chronic Illness Communities

摘要

Rare diseases impact small numbers of people. In the United States, a rare disease is one affecting less than 0.06% of the population. Although any given rare disease is, by definition, rare, the number of people living with a rare disease is substantial. It is estimated that 10% of people world-wide have one of the approximately 7,000 different known rare diseases. If everyone with a rare disease lived in the same country, it would be the world's third largest nation. In this dissertation, I investigate social experiences in common across a range of conditions and the potential of sociotechnical systems.;I began with exploratory interviews to investigate the breadth of these experiences. I distributed a survey to investigate differences between the experiences of rare disease and common chronic illness populations. I conducted a group-based study focused on people with rare diseases' relationships with informal caregivers, investigating sources of social support and unmet support needs.;People with rare diseases face barriers to receiving support and instead turn to online communities for emotional and informational support, but these communities do not sufficiently facilitate tangible support. It is more challenging for people with rare diseases to exchange tangible peer support because they are geographically dispersed and have similar symptomatic limitations. In the final study, I explored one possible approach to addressing this need: the application of social matching to an expanded network of caregivers for people with different rare diseases.;Conducting this research also necessitated the development of new research approaches. I review methods for analyzing skewed or imbalanced data, I explore ways of conducting group-based research remotely with dispersed populations, and I consider privacy challenges of working with a small, sensitive population.;This dissertation addresses a gap in literature on technology for chronic illnesses, focusing on a population rarely studied in sociotechnical fields: people with rare diseases. The primary contribution is in providing researchers with an in-depth understanding of the experiences of people with rare diseases, towards the design of better sociotechnical systems. A secondary contribution is in providing methods and approaches for conducting research with this unique population.