Parental decision-making in congenital heart disease
ABSTRACT To explore whether prenatal diagnosis of congenital heart disease is associated with lower levels of parental distress and greater satisfaction with decisions about cardiothoracic surgery when compared to postnatal diagnosis.
A combined quantitative-qualitative design was used. Participants included the parents of 31 neonates (30 mothers and 22 fathers) admitted to the cardiac intensive care unit between 1 November 2001 and 1 May 2002 for repair of congenital cardiac malformations. Participants completed self-report measures of anxiety, optimism, and life events pre-operatively, and semi-structured qualitative interviews assessing satisfaction with decision-making within 1 week of the operation.
At the time of surgery, mothers of neonates receiving the diagnosis prenatally did not differ from mothers of neonates receiving the diagnosis postnatally on measures of anxiety, optimism, and life events. Fathers of neonates receiving the diagnosis prenatally, however, reported more optimism, lower state and trait anxiety, and fewer negative life events than fathers of neonates receiving the diagnosis postnatally. When we analyzed the interviews, we found that, regardless of the timing of the diagnosis, parents felt as though they made a genuine choice for their baby to have surgery.
In this pilot study, fathers who learned prenatally that their child had a congenital cardiac malformation were less distressed than those who discovered this fact only postnatally. From the parental perspective, nonetheless, distress and urgency do not impair their ability to make decisions about neonatal cardiac surgery.
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ABSTRACT: The purpose of this study was to examine the existing research on the psychological distress experienced by parents whose young children (between the ages of 0 and 5 years old) have a congenital heart defect (CHD). A more detailed understanding of the distress experienced by these parents, including stress associated with the child's age, the severity of the child's diagnosis, and parent characteristics, is vital as it would allow for more targeted and individualized support for this population to enhance parental coping strategies and increase the likelihood of more positive parent–child interactions. This review of 25 studies contributes to the parenting stress literature by focusing on parents of young children and categorizing studies by publication characteristics, research methodology, and findings. The research clearly demonstrates that parents report a great deal of stress throughout the continuum of their child's health care experience. Recommendations for future research and practice implications, such as developing a stress vulnerability model specific to parenting children with CHD, clarifying the role between interdisciplinary team members regarding provision of psychosocial support to parents, and referring parents to specific community-based ongoing social support services, are presented.Journal of Social Service Research 07/2012; DOI:10.1080/01488376.2012.696410 · 0.44 Impact Factor
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ABSTRACT: BACKGROUND: The occurrence of a pre- or postnatal diagnosis of a congenital anomaly may imply changes in the family dynamics and functioning, and may have an important impact on the parents' individual adjustment. OBJECTIVES: This study aimed to assess the perceived burden and individual adjustment of parents whose child has a congenital anomaly, and to examine the variability of parental adaptation (burden and individual adjustment) as a function of the child's characteristics. METHODS: The sample comprised 124 parents (62 couples), whose child has a congenital anomaly. The assessment protocol included the Impact on Family Scale, the Brief Symptom Inventory, and the World Health Organization quality of life instrument (WHOQOL-Bref). RESULTS: Mothers reported higher scores on psychopathological symptoms and lower scores on quality of life than fathers. A significant effect of child's age in the paternal adaptation was found; the perception of the severity of the anomaly was significantly associated with paternal adjustment and with maternal burden. In both parents, the timing of diagnosis and the type of congenital anomaly were significantly correlated with global and financial burden. DISCUSSION: These findings support the complexity of the parents' adaptation when parenting a child with a congenital anomaly, in which several factors interact, particularly those associated with the child's diagnosis.Revista de Psiquiatria Clínica 12/2011; 39(4):136-141. · 0.89 Impact Factor
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ABSTRACT: Background Global Doctors for Choice—a transnational network of physician advocates for reproductive health and rights—began exploring the phenomenon of conscience-based refusal of reproductive healthcare as a result of increasing reports of harms worldwide. The present White Paper examines the prevalence and impact of such refusal and reviews policy efforts to balance individual conscience, autonomy in reproductive decision making, safeguards for health, and professional medical integrity. Objectives and search strategy The White Paper draws on medical, public health, legal, ethical, and social science literature published between 1998 and 2013 in English, French, German, Italian, Portuguese, and Spanish. Estimates of prevalence are difficult to obtain, as there is no consensus about criteria for refuser status and no standardized definition of the practice, and the studies have sampling and other methodologic limitations. The White Paper reviews these data and offers logical frameworks to represent the possible health and health system consequences of conscience-based refusal to provide abortion; assisted reproductive technologies; contraception; treatment in cases of maternal health risk and inevitable pregnancy loss; and prenatal diagnosis. It concludes by categorizing legal, regulatory, and other policy responses to the practice. Conclusions Empirical evidence is essential for varied political actors as they respond with policies or regulations to the competing concerns at stake. Further research and training in diverse geopolitical settings are required. With dual commitments toward their own conscience and their obligations to patients’ health and rights, providers and professional medical/public health societies must lead attempts to respond to conscience-based refusal and to safeguard reproductive health, medical integrity, and women's lives.International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics 12/2013; 123:S41–S56. DOI:10.1016/S0020-7292(13)60002-8 · 1.41 Impact Factor