Relationships of care with pediatric patients requiring long-term care

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