PURPOSE: The purpose of this study was to explore the relationships of family strain, perceived social support, family hardiness, and family adaptation and identify the family resiliency factors for the adaptation of families who have a child with congenital heart disease. METHOD: The sample consisted of 90 families who had a child diagnosed with congenital heart disease and completed surgical treatment. Data was collected from parents using a questionnaire. RESULTS: Results from path analyses revealed that family strain had a direct effect on both perceived social support and family hardiness, and an indirect effect on family adaptation. Also, the findings revealed that perceived social support had a direct effect on both family hardiness and family adaptation, and family hardiness had a direct effect on family adaptation. Thus, these results indicated that perceived social support and family hardiness had a mediating effect on family strain. CONCLUSION: Findings provide the evidence for the theoretical and empirical significance of perceived social support and family hardiness as family resiliency factors for family adaptation. Clinical implications of these findings might be discussed in terms of family-centered nursing interventions for the families who have a child with congenital heart disease based on an understanding of family resiliency for adaptation.
*Adaptation, Psychological ; Child ; Family/*psychology ; Female ; Heart Defects, Congenital/*psychology/surgery ; Humans ; Male ; Questionnaires ; Social Support

BACKGROUND AND OBJECTIVES: Adults with congenital heart disease (CHD) are an increasing group of patients thanks to the survival of over 85% of children with CHD. 20% of these patients shall warrant a surgical procedure during their life span. However, currently there is no one risk score that assess correctly the mortality of these procedures. Thus, we analyse the risk scores used at our institution. METHODS: From May 1991 till June 2017, 608 procedures in adults with CHD were performed. The 3 risk scores (risk adjustment for congenital heart surgery [RACHS-1], Aristotle, and Euroscore I) of each procedure were analysed. We used area under the receiver operating characteristic curve (c-index) to measure model discrimination, and Hosmer-Lemeshow (H-L) statistic along with calibration plots to measure calibration. RESULTS: There was no statistical difference between the area under the curve for the 3 scores (χ²=0.58 with 2 df, p=0.750). There was no evidence of lack of fit for RACHS-1 (H-L, χ²=2.61; p=0.271) and Aristotle score (H-L, χ²=5.69; p=0.459). However, there was evidence in lack of calibration in the Euroscore I scoring system (H-L, χ²=33.69; p<0.001). The calibration slope for RACHS-1 was 0.912, for Aristotle (stratified in risk groups) was −0.14 and for Euroscore 1 (stratified in risk groups) was 0.46. CONCLUSIONS: RACHS-1 seems to be best risk scoring system for calculating mortality applied to surgery in adults with CHD.
Adult ; Calibration ; Child ; Discrimination (Psychology) ; Heart Defects, Congenital ; Humans ; Mortality ; ROC Curve ; Thoracic Surgery

PURPOSE: Common conditions, such as dehydration or respiratory infection can aggravate hypoxia and are associated with interstage mortality in infants who have undergone palliative surgery for congenital heart diseases. This study was done to evaluate the efficacy of a home monitoring program (HMP) in decreasing infant mortality. METHODS: Since its inception in May 2010, all infants who have undergone palliative surgery have been enrolled in HMP. This study was a prospective observational study and infant outcomes during HMP were compared with those of previous comparison groups. Parents were trained to measure oxygen saturation, body weight and feeding volume and to contact the hospital through the hotline for emergency situations. Telephone counseling was conducted by clinical nurse specialists every week post discharge. RESULTS: Forty-one infants were enrolled in HMP. Nine hundred telephone counseling sessions were conducted. Seventy-three infants required telephone triage with the most common conditions being gastrointestinal (50.7%) and respiratory symptoms (32.9%). With HMP intervention, interstage mortality decreased from 18.6% (8/43) to 9.8% (4/41) (chi2=1.15, p=.283). CONCLUSION: Results indicate that active measures and treatments using the HMP decrease mortality rates, however further investigation is required to identify various factors that contribute to hemodynamic complications during the interstage period.
Body Temperature ; Body Weight ; Caregivers/education/psychology ; Counseling ; Female ; Heart Defects, Congenital/mortality/prevention & control/*surgery ; Heart Rate ; Hospitalization ; Hotlines ; Humans ; Infant ; Infant, Newborn ; Male ; Monitoring, Physiologic/*methods ; Oxygen Consumption ; Palliative Care ; *Program Evaluation ; Prospective Studies ; Time Factors