Extreme caregiving: an ethical analysis of narratives by parents

Abstract

Home medical care for medically complex and intellectually disabled children is frequently prescribed by providers, but the consequences for the family of such care are rarely considered in full. It is recognized that at times the care required might become physically demanding and emotionally burdensome. However, I believe that this sort of caregiving often reaches extreme levels, making our continued reliance on family caregiving ethically problematic. This paper analyzes several novel-length narratives by parents of intellectually disabled children to look deeper into the lives effected by this complex form of home care. Building on the care ethics framework developed by Joan Tronto, I examine particularly the ways in which the parents perceive their caregiving duties and demonstrate Tronto's caregiving virtues of attentiveness, responsibility, competence and responsiveness. This work begins to theorize caregiving in a new way, revealing previously unrecognized ethical concerns raised by this sort of extreme caregiving.