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.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Nursing Research Study Section (NURS)
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University of North Carolina Chapel Hill
Schools of Nursing
Chapel Hill
United States
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Holditch-Davis, Diane; Miles, Margaret Shandor; Burchinal, Margaret R et al. (2011) Maternal role attainment with medically fragile infants: Part 2. relationship to the quality of parenting. Res Nurs Health 34:35-48
Cho, June; Holditch-Davis, Diane; Miles, Margaret S (2010) Effects of gender on the health and development of medically at-risk infants. J Obstet Gynecol Neonatal Nurs 39:536-49
Cho, June; Holditch-Davis, Diane; Miles, Margaret S (2008) Effects of maternal depressive symptoms and infant gender on the interactions between mothers and their medically at-risk infants. J Obstet Gynecol Neonatal Nurs 37:58-70
Lee, Tzu-Ying; Holditch-Davis, Diane; Miles, Margaret Shandor (2007) The influence of maternal and child characteristics and paternal support on interactions of mothers and their medically fragile infants. Res Nurs Health 30:17-30
Docherty, Sharron L; Lowry, Candace; Miles, Margaret Shandor (2007) Poverty as context for the parenting experience of low-income Lumbee Indian mothers with a medically fragile infant. Neonatal Netw 26:361-9
Lee, Tzu-Ying; Miles, Margaret Shandor; Holditch-Davis, Diane (2006) Fathers' support to mothers of medically fragile infants. J Obstet Gynecol Neonatal Nurs 35:46-55
Miles, Margaret Shandor (2003) Parents of children with chronic health problems: programs of nursing research and their relationship to developmental science. Annu Rev Nurs Res 21:247-77
Van Riper, Marcia (2003) The sibling experience of living with childhood chronic illness and disability. Annu Rev Nurs Res 21:279-302
Holditch-Davis, Diane; Cox, Mary Foster; Miles, Margaret Shandor et al. (2003) Mother-infant interactions of medically fragile infants and non-chronically ill premature infants. Res Nurs Health 26:300-11
Docherty, Sharron L; Miles, Margaret Shandor; Holditch-Davis, Diane (2002) Worry about child health in mothers of hospitalized medically fragile infants. Adv Neonatal Care 2:84-92

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