Loss and Grief in Parents of Children Hospitalized for Congenital Heart Disease

OBJECTIVE: Nondeath losses and experiences of grief can impact mental health but are understudied among parents of children with complex medical conditions. This study leverages online crowdsourcing, an approach that gathers diverse ideas by soliciting contributions from an online community, to characterize losses experienced by parents of children with congenital heart disease (CHD).

METHODS: Eighty parents of children with CHD and a prior history of cardiac surgery and hospitalization across 44 US hospitals responded to open-ended questions on a private social networking site as part of a larger study. Data were coded and analyzed using a hybrid inductive-deductive approach, and themes regarding the ways that loss and grief were experienced by parents were identified.

RESULTS: Six themes were identified: (1) loss of identity was an overarching theme that cut across the other themes; (2) loss of sense of security/predictability; (3) loss of "normal/healthy" pregnancy, birth, and child; (4) work/financial loss; (5) loss of parent-infant bonding and parenting experiences; and (6) loss of/impact on relationships. To support families with their experiences of nondeath losses, parent participants recommended that health care professionals acknowledge and normalize grief, provide memory and meaning-making opportunities, support parents in establishing a bond with their baby, facilitate parent participation in inpatient care, and offer general psychosocial support.

CONCLUSIONS: Acknowledging and normalizing nondeath losses and grief is paramount to supporting families of children with CHD. A thorough understanding of the types of losses experienced is necessary to better support parents and promote healthy family and child outcomes.