Extending & Facilitating Informal Care Networks for People with Epilepsy & Caregivers

Abstract

About 53 million adults in the U.S. have provided care to an adult or child who needs assistance, and the number of informal caregivers is increasing. To reduce their physical and psychological burdens from long-term care, it is necessary to get support from other people. Focusing on people with epilepsy (PWEs) and their primary informal caregivers (PWECs), my doctoral research aims (1) to understand the needs and challenges in seeking and managing information and support; (2) to explore and design technologies that could increase epilepsy awareness and knowledge so that the potential caregivers can provide proper help; and ultimately, (3) to find a way to extend and facilitate informal care networks so that PWEs and PWECs could reduce the burdens and improve their well-being and health. Focusing on epilepsy awareness and attitudes among stakeholders in elementary schools, I propose studies that will utilize interview, survey, and participatory design methods. My dissertation work will shed a new light on informal care networks that involve secondary caregivers and bystanders as temporary caregivers.