• Juliet S Tan, Sharron L Docherty, Raymond Barfield, and Debra H Brandon.
• Division of Pediatric Hematology and Oncology, Duke University Hospital, Durham, North Carolina, USA.
• J Palliat Med. 2012 May 1; 15 (5): 579584579-84.

IntroductionHealth care providers' understandings of parental bereavement needs before and in the acute period following the death of an infant with a complex chronic condition are based upon models that outline the process of grief and provide direction for possible points of intervention. These models do not address prospective factors along the illness trajectory that may contribute to the depth and debilitating nature of grief, and fail to clarify the influence of social structures on parents' experience and construct of grief, loss, and mourning. The purpose of this study was to prospectively describe the bereavement experience of parents whose infants die in acute care settings with a complex chronic condition.MethodsA longitudinal, qualitative, descriptive design was used to explore the process of parental bereavement. Extreme case sampling with variation on race, socioeconomic status, prenatal diagnosis, and multiple gestations was used to select 7 cases represented by over 72 narrative interviews with parents.ResultsFindings are organized into five broad categories: Having Expectations, Continuity of Care, Memory Making, Wide Network of Support, and Altruism. Themes under each category were developed based upon examples given in the parental interviews.ConclusionThis study provides an exploration of the complex and longitudinal nature of bereavement. Anticipatory support initiated prior to the death of an infant can help parents experience a smoother transition from caring for their very ill child to coping with the actual death event and its aftermath.

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