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    Relationships of care with pediatric patients requiring long-term care

    Author
    Shroff, Ria
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    180018_Shroff_rpi_0185N_11683.pdf (719.6Kb)
    Other Contributors
    Campbell, Nancy D. (Nancy Dianne), 1963-; Akera, Atsushi; Velho, Raquel; Costelloe-Kuehn, Brandon James;
    Date Issued
    2020-05
    Subject
    Science and technology studies
    Degree
    MS;
    Terms of Use
    This electronic version is a licensed copy owned by Rensselaer Polytechnic Institute, Troy, NY. Copyright of original work retained by author.;
    Metadata
    Show full item record
    URI
    https://hdl.handle.net/20.500.13015/2514
    Abstract
    Observing care relationships for pediatric patients in long-term care facilities provides important insight into caregiving practices, notions of independence and autonomy, and communication practices. Caregivers may fulfill medical or emotional needs of the child in the form of immediate medical needs, various mental and physical therapy goals, emotional and physical growth, and affection. Care relationships consist of the child, their medical equipment, and caregivers. These actors must learn to communicate needs, wants, and desires with one another through the course of many interactions to negotiate personal choices and optimize power and decision-sharing between one another. Nonverbal familiarity with one another in such a relationship is essential in order to rapidly address emergencies at certain times, but also to facilitate smooth movement from one task to another. Bonds between children, their equipment, and caregivers are formed through maintained association with one another so that minor nuances in gesticulation can convey major meaning. Cultivation of these bonds over time can improve comfort and quality of care for the child. Previous studies have focused independently on either the blurring or cementing of boundaries in relationships in singular fields of care work such as human development, patient-centered care, or disability care. Ethnographic fieldwork around this population allows for examination of the intersection of these different fields of study. Observation of dynamics of care relationships in this paper seek to inform caregiver training practices and medical device design of the future to provide the best care for patients both within this patient population and outside of it.; Keywords: Relational ontology/autonomy, Cyborg theory, Human development, Patient-centered care, Care work, Disability studies, Power dynamics, Dynamic decision-making, Risk/harm reduction, Everyday Resistance, Product Design, Medical Education;
    Description
    May 2020; School of Humanities, Arts, and Social Sciences
    Department
    Dept. of Science and Technology Studies;
    Publisher
    Rensselaer Polytechnic Institute, Troy, NY
    Relationships
    Rensselaer Theses and Dissertations Online Collection;
    Access
    Users may download and share copies with attribution in accordance with a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License. No commercial use or derivatives are permitted without the explicit approval of the author.;
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