Improved medical technology and nursing care are saving the lives of infants with complex medical problems who would have died earlier. These infants are in perilous physical condition, become technologically dependent, and may spend months or years in a hospital while they are diagnosed, treated, and stabilized. Parents of these infants must cope with the challenges inherent in becoming a new parent and at the same time cope with the highly technological health care environment and their infant's serious illness, uncertain outcome, and long or frequent hospitalizations. Because of the complexities of parenting these sick children, it is vital to know more about what these parents experience as they attempt to develop and sustain their parenting role. The overall aim of this longitudinal study is to systematically investigate the process of parental role attainment with medically fragile infants in the context of the highly technological health care environment, to examine the influence of the infant and selected parent, family, and health care factors on parental role attainment, and to explore the influence of parental role attainment on mother-child relationships through the second year of life. Subjects will be 105 medically fragile infants and their parents. A medically fragile infant is defined as an infant who is diagnosed with a serious life-threatening health problem within the first 2 months of life as the result of sequelae of prematurity or a serious birth defect or chronic disease. Data collection methods focus on parental role attainment, conceptualized as involvement, identity, and competence; infant characteristics (social-physical development, perceived severity, and medical acuity); selected parent and family characteristics; and support from within the health care environment. Data will be collected using multiple methods (interview, questionnaires, observation, and assessment) with multiple informants (parents, nursing staff, research team) over time (until the infant reaches 12 months, with the first 50 cases followed to 24 months) and across settings (although the primary focus for data collection is the hospital, data will be collected in the home following the infant's discharge). The ultimate goal is to identify key factors affecting the responses of parents of these medically fragile infants, in order to develop appropriate interventions to support parental role attainment over time and across settings.
Showing the most recent 10 out of 22 publications
