Therefore, we propose a holistic model of care which supports both parents as caregivers of children undergoing surgery for CHD and the medical staff involved in their care. These changes cannot be implemented without also addressing the needs of the medical staff in their role as caregivers. We thus conclude that the support offered to parents during the hospitalization period should be increased by trying to minimize their negative experiences and strengthen their inner coping abilities. However, within this chaotic and stressful situation, parents had occasional supportive experiences which decreased their emotional distress and isolation and helped them throughout this difficult period. It is therefore no surprise that many parents display negative psychological outcomes which extend beyond the period of hospitalization and may also affect their future parenting and coping. Based on our analysis, we found that the experience of having a child undergo surgery for a CHD can be regarded as a chaotic period characterized by uncertainty, confusion, and helplessness. The two superordinate themes intersect such that parents report positive as well as negative experiences within both their inner and outer worlds. Our analysis yielded eight categories which were grouped into four themes and two main superordinate themes: (1) dialectical tension between positive and negative experiences and (2) fluctuations between the inner and the outer world. Ten semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis according to the instructions of Smith and Osborn. Our aim was to explore parents’ subjective experiences as primary caregivers. The present article is based on a qualitative study focusing on parents of children born with congenital heart defects (CHDs) and hospitalized in the children’s intensive care unit post-surgery. 3Medical Psychology Graduate Program, Stress, Hope and Cope Lab, Tel Aviv-Yaffo Academic College, Tel Aviv, Israel.2Pediatric Cardiac Intensive Care, The Edmond and Lilly Safra Children’s Hospital, Sheba Medical Center, Ramat Gan, Israel.1Oncology Center, Assuta Hospital, Tel Aviv, Israel.Leeza David Vainberg 1* Amir Vardi 2 Rebecca Jacoby 3
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