The Long Defeat: Meeting the Spiritual and Emotional Needs of Caregivers of Chronically Ill Children
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Author
Barone, Jeanne
Date
2005
Degree
Master of Arts in Pastoral Theology
Abstract
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.