Increased numbers of children who are technology-dependent are now being cared for at home by parents and other caregivers. However, there is inadequate understanding of the daily lives of families who care for technology-dependent children at home and how these families manage over time. The purpose of this descriptive, naturalistic study was to explore the meaning of and factors involved in the long-term home care of a child who is technology-dependent from the family's point of view using an interpretive interactionist approach (Denzin, 1989). The sensitizing theoretical framework for the study was Kazak's (1986, 1989, 1992) systems and social-ecological model. The purposive sample consisted of 15 families which included at least one child aged 3-12 years who: (a) had been technology-dependent and living at home for at least one year, and (b) was medically stable at the time of the study. Family experiences with childhood technology dependence were explored using unstructured parental interviews and home observations of family members engaged in usual routines and activities of daily living. Demographic data were also obtained. Four themes emerged from the interpretive interactionist data analysis: (a) managing daily life with technology, (b) negotiating with outside entities, (c) maintaining a functioning family, and (d) making sense of life. The potential for frequent and unexpected change, unpredictability, and limited parental control inherent in each of these major thematic areas contributed to families' perceptions of the fragility and instability of family life with technology. The contextualization of the phenomenon of family experience with long-term childhood technology dependence revealed that families felt as if they were "living in a house of cards." Major strategies used to increase stability were vigilance, advocacy, and reframing. Based on the results of the study, recommendations for nursing are made.
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 9633249; ProQuest document ID: 304284421. The author still retains copyright.