Maintaining a childhood: A phenomenologic study of family experiences providing home care for chronically ill, technology -dependent childre

The purpose of this study was to discover knowledge about the long term personal experience of providing home care for children who are medically fragile and have a complex dependency on various technologies and nursing interventions. Informants were the primary and secondary caregivers in the child's family who offered unstructured descriptions of their experience. Twenty-three caregivers from the 13 families in this study had from 1 to 13 1/2 years of around-the-clock high technology home care experience. The results, analyzed and interpreted according to phenomenology, describe the structure of the phenomenon "taking care of the child at home" from a relational perspective. The analysis revealed five core processes consistent across all 13 caregivers, regardless of the medical condition, age, or technology needed by the child. The processes are: accepting; learning; taking back the child; reshifting the every day; and seeking validation. Caregiving is a mufti-level phenomenon, with one process combined into elements of the next. The processes merged with everyday family routines and contributed to the development of a web of care that was necessary to ensure a childhood and a normal family life. Caregivers integrated reason with emotion in their decision to do this extraordinary care year after year.;The findings from this study provide information about the experience of choosing to take the child home. They give the healthcare team an idea of what goes on during the months and years after the child leaves the hospital. They also give prospective foster parents a framework to consider when making the decision about taking on a special needs, technology-dependent child. The results can be used as a map to a world inaccessible to most people, the 24 hour commitment to a medically fragile child within a family. Knowing what the processes are and how they are defined in this population of families is meaningful to professionals who plan pediatric home health care, interact with the child and family in the community, and counsel parents of newly diagnosed medically fragile children.