Objectives: The aims of this study were: 1. To identify and describe the social processes and dynamics that occur as families work with schools to define and construct a relatively normal life for children who are medically fragile/technology dependent (mf/td) and their families, 2. To compare processes used by these families to the literature on normalization, which is mainly based on families living with more stable chronic conditions, and 3. To analyze and map the school-based social networks of children who are mf/td.
Design: This was an interpretive study, based in the field, using Symbolic Interaction as the conceptual framework.
Population, Sample, Setting, Years: The population of interest was children, aged 5 to 12, with complex chronic conditions and their families. These children received extensive, skilled care from their families, professional nurses and in-home support services. The sample consisted of 23 children who are mf/td, one or two parents of each child, and teachers and school nurses of the children who attended public elementary schools. Settings for data collection included family homes and multiple sites within elementary schools, especially classrooms and nurses' offices. Data was collected from 1999 to 2002.
Concepts: Important concepts that informed this study included medical fragility and technology dependence, defined as the need for ongoing skilled care, and reliance on respiratory or nutritional technology and/or extensive medication regimens; normalization, as described in the literature of chronic childhood illness, and socialization, defined as the numbers and types of social interactions at school engaged in by children who are mf/td.
Methods: This study used ethnographic methods of interviewing, observation, and examination of relevant documents.
Findings: Findings will be reported for the first two objectives listed above. Families and educators worked together to create an environment of safety and achievement at school. This process often presented challenges in finding resources that were appropriate for a child's individual needs and goals, in assuring appropriate health care and therapies, and in arranging transportation. Parents perceived that they became more knowledgeable about their rights, and the responsibilities of schools, over time. They sometimes used advocates or resorted to threats to invoke their legal rights under the Americans with Disabilities Act, or to sue, when they became frustrated with the pace of school response to their requests. Individual Education and Health Plans (IEP) were used to establish interventions for children's individual goals. Both parents and educators perceived that each had input into the IEP; however, meeting the goals was not always possible given differences in priorities or perceptions of need, limited resources, and changing conditions. Parents and professional both took protective actions. Parents often "popped in" to observe conditions at school first hand. Teachers tried to limit their liability by being selective about which care procedures they would perform. School nurses created local "certification" and training programs to prepare teachers to deliver skilled care. The school district struggled to provide emergency resources and to deal with contemporary issues, such as care for children with "Do not resuscitate" orders. When negotiations between parents and educators failed, parents sometimes made the decision to remove children from the classroom and place them in homebound programs. They often felt pressured by the district or health providers to keep the children in school, however, because of the presumed advantages for socialization and site-based services. Family developmental trajectories were often greatly disrupted by caregiving demands. These families did not meet established criteria for normalization, and most did not consider their lives "normal"; however, they did use some normalizing strategies and they often considered the quality of their family lives was high despite disruption in routines and multiple demands. Many families believed that having children attend school facilitated establishment of more normal family routines and provided a chance for concentration on the needs of other family members besides the child who was mf/td.
Conclusions: School is an important part of daily life for many children who are mf/td and their families, but attendance presents important challenges and requires close communication between families and educators.
Implications: Practice and policy must aim to optimize safety, social participation, and opportunities for individually appropriate academic and life-skills growth for children who are mf/td. Further study is needed to examine family development over time while raising children who are mf/td.
Funding: National Institute of Nursing Research: NR07636 and the University of New Mexico College of Nursing
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