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The heart of the matter: the developing mother-infant relationship in prenatal and postnatal diagnosis of congenital heart disease
thesisposted on 16.01.2017, 23:52 by Re, Jennifer Meryl
Congenital heart disease is one of the most common birth defects, affecting eight in 1,000 infants, many of whom require major surgery within weeks of birth. Benefits of prenatal diagnosis to medical management of the neonate are well recognized, but little is known of the psychological aspects of prenatal compared with postnatal diagnosis, and implications for the developing mother-infant relationship. Research on congenital heart disease (CHD) has identified parental stress and anxiety in relation to diagnosis, care and quality of life issues, as well as child outcome, but few have focused upon issues in relation to prenatal compared with postnatal diagnosis, the mother’s response to the infant’s treatment, or the infant’s experience. Psychoanalytic and attachment theories and associated research have emphasized the critical importance of the early mother-infant relationship for the general development and future well-being of the child. A prospective longitudinal, staged study was designed to explore the psychological well-being of mothers and babies and the nature of the developing mother-infant relationship in these extraordinary circumstances, employing complementary qualitative and quantitative research methods. This thesis reports on Stage One of that study, conducted when infants were two months of age. Data gathering was based on a model of parent-infant relationship assessment, integrating mothers’ perceptions, standardized measures of maternal distress, and observations of infant interaction with the researcher being gathered. The well-being of 27 mothers of 14 infants with prenatal and 13 with postnatal diagnosis of CHD was investigated, using self-reported maternal distress on measures of depression, anxiety and parenting stress (EPDS, STAI, PSI-SF). Infants’ well-being was tapped using a measure of social withdrawal (ADBB). Potential associations with timing of diagnosis, and between maternal distress and infant social withdrawal were examined. In-depth interviews with the mother explored experiences of the diagnosis, infant’s hospitalization and treatment, and her perceptions of her developing relationship with her infant; the resulting narratives were subjected to thematic content analysis. High proportions of all mothers and infants were found to be experiencing distress, but no differences emerged between the prenatal and postnatal groups on any maternal or infant distress measure. Significant depression was associated with infant social withdrawal. Thematic analysis of the maternal interviews revealed shock and acute stress as central to mothers’ experience, regardless of diagnosis group. Also mothers’ perception of infant responsiveness affirmed life, and appeared to facilitate mothers’ recovery. Maternal investment in the baby emerged as a critical, underlying factor in the developing relationship. Implications for further research are drawn out, as well as for clinical practice. There are important ethical reasons to pursue translational research aiming to alleviate distress in both mothers and their infants who are affected by CHD.