Moorman Erin, Williams Conrad, Christofferson Jennifer, McWhorter Linda G, Demianczyk Abigail C, Kazak Anne E, Karpyn Allison, Sood Erica
Division of Behavioral Health, Nemours Children's Health, Wilmington, Delaware.
Department of Pediatrics, College of Medicine, Medical University of South Carolina Health System, Charleston, South Carolina.
Hosp Pediatr. 2025 May 1;15(5):433-441. doi: 10.1542/hpeds.2024-008133.
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).
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.
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.
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.
非死亡损失和悲伤经历会影响心理健康，但在患有复杂疾病儿童的父母中，这方面的研究较少。本研究利用在线众包这一通过向在线社区征集贡献来收集各种想法的方法，来描述先天性心脏病（CHD）患儿父母所经历的损失。
作为一项更大规模研究的一部分，美国44家医院的80位患有CHD且有心脏手术和住院史的患儿父母，在一个私人社交网站上回答了开放式问题。使用混合归纳 - 演绎方法对数据进行编码和分析，并确定了父母经历损失和悲伤方式的主题。
确定了六个主题：（1）身份丧失是贯穿其他主题的首要主题；（2）安全感/可预测性丧失；（3）“正常/健康”的怀孕、分娩和孩子丧失；（4）工作/经济损失；（5）亲子关系和育儿经历丧失；（6）人际关系丧失/受到影响。为了帮助家庭应对非死亡损失经历，参与研究的父母建议医疗保健专业人员承认悲伤并使其正常化，提供记忆和赋予意义的机会，支持父母与婴儿建立联系，促进父母参与住院护理，并提供一般心理社会支持。
承认并使非死亡损失和悲伤正常化对于支持CHD患儿家庭至关重要。全面了解所经历的损失类型对于更好地支持父母以及促进健康的家庭和儿童结局是必要的。
