Abstract
OBJECTIVE: People experiencing homelessness (PEH) are more likely to be diagnosed with epilepsy and to experience seizure-related morbidity and mortality. However, despite the increased prevalence of this condition, there is limited research examining the granular impact of epilepsy on PEH's daily lives and a dearth of research considering the perspectives of PEH themselves. This mixed-methods study aims to address these oversights by comparing the impact of epilepsy on homeless and housed people with epilepsy (PWE). As "impact" can be variously defined and understood, several validated questionnaires measuring psychiatric symptomatology, perceived stigma, epilepsy knowledge, and epilepsy-related quality of life (QoL), respectively, were used as proxies. PEH were also asked open-ended questions about their epilepsy-related experiences, to gather in-depth insights into the ways that epilepsy had shaped their lives. METHODS: This was a mixed-methods study using a study-specific set of questionnaires including the following: sociodemographic information; measures of psychiatric symptomatology, epilepsy-related knowledge, QoL, and stigma; and open-ended questions on the impact of epilepsy on QoL. RESULTS: PEH and housed PWE were recruited when attending an inner-city Dublin hospital. Data from 62 participants were included, 13 PEH and 49 housed participants. The results demonstrated that PEH had a higher burden of psychiatric symptomatology than housed PWE, including higher anxiety (p = .001) and depression (p < .001) scores. Once this was adjusted for, there was no difference in QoL between the two groups. PEH also reported significantly more epilepsy-related stigma relative to housed PWE (total revised Epilepsy Stigma Scale mean = 5.7 ± 3.0 vs. 1.6 ± 2.5, p < .001). PEH emphasized the emotional and affective burden that epilepsy presented in their lives. SIGNIFICANCE: This research emphasizes the need for clinicians to remain cognizant of the social context in which chronic disease emerges and the importance of targeted, holistic, and multidisciplinary models of care to improve QoL and alleviate stigma for PEH experiencing epilepsy.