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Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

ABSTRACT: OBJECTIVE:To inform pediatric critical care practice by examining how mothers and fathers experience the stress of caring for a young child with congenital heart disease and use hospital and community supports. DESIGN:Qualitative study of mothers and fathers of young children with congenital heart disease. SETTING:Tertiary care pediatric hospital in the Mid-Atlantic region of the United States. SUBJECTS:Thirty-four parents (20 mothers, 14 fathers) from diverse backgrounds whose child previously underwent cardiac surgery during infancy. INTERVENTIONS:Subjects participated in semi-structured, individual interviews about their experiences and psychosocial needs at the time of congenital heart disease diagnosis, surgical admission, and discharge to home after surgery. Qualitative interview data were coded, and consistent themes related to emotional states, stressors, and supports were identified. MEASUREMENTS AND MAIN RESULTS:Fathers experience and respond to the stressors and demands of congenital heart disease in unique ways. Fathers often described stress from not being able to protect their child from congenital heart disease and the associated surgeries/pain and from difficulties balancing employment with support for their partner and care of their congenital heart disease child in the hospital. Fathers were more likely than mothers to discuss support from the work environment (coworkers/managers, flexible scheduling, helpful distraction) and were less likely to describe the use of hospital-based resources or congenital heart disease peer-to-peer supports. CONCLUSIONS:This study highlights the importance of understanding the paternal experience and tailoring interventions to the unique needs of both mothers and fathers. Opportunities for critical care practice change to promote the mental health of mothers and fathers following a diagnosis of congenital heart disease are discussed.

SUBMITTER: Sood E

PROVIDER: S-EPMC6037564 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

Sood Erica E Karpyn Allison A Demianczyk Abigail C AC Ryan Jennie J Delaplane Emily A EA Neely Trent T Frazier Aisha H AH Kazak Anne E AE

Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies 20180701 7

<h4>Objective</h4>To inform pediatric critical care practice by examining how mothers and fathers experience the stress of caring for a young child with congenital heart disease and use hospital and community supports.<h4>Design</h4>Qualitative study of mothers and fathers of young children with congenital heart disease.<h4>Setting</h4>Tertiary care pediatric hospital in the Mid-Atlantic region of the United States.<h4>Subjects</h4>Thirty-four parents (20 mothers, 14 fathers) from diverse backgr ...[more]

PMID: 29533356

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Project description:OBJECTIVES:To present the recommendations and supporting literature for RBC transfusions in critically ill children with acquired and congenital heart disease developed by the Pediatric Critical Care Transfusion and Anemia Expertise Initiative. DESIGN:Consensus conference series of 38 international, multidisciplinary experts in RBC transfusion management of critically ill children. METHODS:Experts developed evidence-based and, when evidence was lacking, expert-based clinical recommendations and research priorities for RBC transfusions in critically ill children. The cardiac disease subgroup included three experts. Electronic searches were conducted using PubMed, EMBASE, and Cochrane Library databases from 1980 to May 2017. Agreement was obtained using the Research and Development/UCLA appropriateness method. Results were summarized using the Grading of Recommendations Assessment, Development, and Evaluation method. RESULTS:Twenty-one recommendations were developed and reached agreement. For children with myocardial dysfunction and/or pulmonary hypertension, there is no evidence that transfusion greater than hemoglobin of 10?g/dL is beneficial. For children with uncorrected heart disease, we recommended maintaining hemoglobin greater than 7-9.0?g/dL depending upon their cardiopulmonary reserve. For stable children undergoing biventricular repairs, we recommend not transfusing if the hemoglobin is greater than 7.0?g/dL. For infants undergoing staged palliative procedures with stable hemodynamics, we recommend avoiding transfusions solely based upon hemoglobin, if hemoglobin is greater than 9.0?g/dL. We recommend intraoperative and postoperative blood conservation measures. There are insufficient data supporting shorter storage duration RBCs. The risks and benefits of RBC transfusions in children with cardiac disease requires further study. CONCLUSIONS:We present RBC transfusion management recommendations for the critically ill child with cardiac disease. Clinical recommendations emphasize relevant hemoglobin thresholds, and research recommendations emphasize need for further understanding of physiologic and hemoglobin thresholds and alternatives to RBC transfusion in subpopulations lacking pediatric literature.

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Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

Publications

Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

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