Between Dec 19, 2024 and Jan 2, 2025, datasets can be submitted to DRUM but will not be processed until after the break. Staff will not be available to answer email during this period, and will not be able to provide DOIs until after Jan 2. If you are in need of a DOI during this period, consider Dryad or OpenICPSR. Submission responses to the UDC may also be delayed during this time.

Browsing by Author "Freitag, Lisa C."

Now showing 1 - 1 of 1
  • Thumbnail Image
    Item
    Extreme caregiving: an ethical analysis of narratives by parents
    (2013-12) Freitag, Lisa C.
    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.