Colette Gramszlo1, Allison Karpyn2, Jennifer Christofferson3, Linda G McWhorter1, Abigail C Demianczyk4, Stacey L Lihn5, Jena Tanem6, Sinai Zyblewski7, Elizabeth Lucey Boyle7, Anne E Kazak3,8, Erica Sood1,3,8,9. 1. Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA. 2. Center for Research in Education and Social Policy, Department of Human Development and Family Sciences, University of Delaware, Newark, DE, USA. 3. Center for Healthcare Delivery Science, Nemours Children's Health System, Wilmington, DE, USA. 4. Department of Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, PA, USA. 5. Sisters by Heart, El Segundo, CA, USA. 6. Herma Heart Center, Children's Wisconsin, Milwaukee, WI, USA. 7. Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA. 8. Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University,Philadelphia, PA, USA. 9. Nemours Cardiac Center, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA.
Abstract
OBJECTIVE: To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation. STUDY DESIGN: Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods. RESULTS: Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation. CONCLUSIONS: Care teams can support parenting during infant hospitalisation by promoting parents' roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.
OBJECTIVE: To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation. STUDY DESIGN: Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods. RESULTS: Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation. CONCLUSIONS: Care teams can support parenting during infant hospitalisation by promoting parents' roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.
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