The Long Defeat: Meeting the Spiritual and Emotional Needs of Caregivers of Chronically Ill Children

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Barone, Jeanne
Master of Arts in Pastoral Theology
My pastoral project is focused on caregivers for children with chronic and severe health conditions. The particular nature of the chronic health conditions of the children varies, but they all need virtually continuous care. There are two distinct groups whose lives and work are so closely intertwined that they spend days and sometimes months together at the bedsides of children like these. These two groups consist of caregivers who are the parents of such children and caregivers who are nurses caring for these children at the children’s hospital where I work. These two groups and their approaches to care of the child are distinct and at times oppositional, yet they are bound together in an intimate dance at bedside, sometimes as the best of friends and staunch co-advocates for the children and at other times as virtual enemies whose views of the child and preferred plans of care could not be more different. These are persons who care for children who suffer, in a system not under their control (nurses and parents alike), and who are daily faced with spiritual issues and questions about the nature and meaning of suffering that are particularly painful because innocent children are the ones who are suffering. The goal of this project is to begin to develop processes and programs to better meet the spiritual and emotional needs of parent and nurse caregivers. The pastoral concern to be addressed is the need for pastoral care for those who work with and try to keep children alive within and in spite of the ongoing onslaught of suffering and stress within the context of the intensely stressful and mechanistic environment of the hospital.