Pestian Teresa, Thienprayoon Rachel, Grossoehme Daniel, Friebert Sarah, Humphrey Lisa
Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
Division of Palliative Care, Department of Anesthesia, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Pediatr Qual Saf. 2020 Jul 10;5(4):e328. doi: 10.1097/pq9.0000000000000328. eCollection 2020 Jul-Aug.
Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified definition of safe care. This qualitative study sought to explore caregiver views regarding safe care in pediatric HPC.
This is a secondary analysis of qualitative data from a multisite study utilizing semistructured interview data to evaluate parental perspectives of quality in pediatric home-based HPC programs across 3 different pediatric tertiary care hospitals. Eligible participants included parents and caregivers of children who were enrolled in a pediatric home-based hospice and palliative care program (HBHPC) from 2012 to 2016. The analysis was done using grounded theory methodology.
Forty-three parents participated in 39 interviews across all 3 sites; 19 families were bereaved. Responses to the prompt regarding safe care produced 8 unique domains encompassing parental definitions of safe care in pediatric HPC.
Parents of children in HPC programs describe "safe care" in novel ways, some of which echo Maslow's hierarchy of needs. The use of traditional hospital safety measures for patients receiving HPC could undermine the patient's goals or dignity, ultimately leading to harm to the patient.
Patients' and families' unique goals and values must be considered when defining safety for children in this population. Future studies should continue to explore family perspectives of safety in the hospital and ambulatory settings and seek to identify measurable indicators in safety which are truly patient- and family-centered.
成人医学和儿科学都对患者安全进行了广泛研究；然而，关于儿科临终关怀与姑息治疗（HPC）中特定安全事件的知识却很有限。此外，儿科HPC缺乏安全护理的统一界定。这项定性研究旨在探究护理人员对儿科HPC中安全护理的看法。
这是一项对多地点研究的定性数据进行的二次分析，该研究利用半结构化访谈数据来评估3家不同儿科三级护理医院中基于家庭的儿科HPC项目的家长对质量的看法。符合条件的参与者包括2012年至2016年期间参加基于家庭的儿科临终关怀与姑息治疗项目（HBHPC）的儿童的家长和护理人员。分析采用扎根理论方法。
43位家长参与了所有3个地点的39次访谈；19个家庭失去了孩子。对关于安全护理提示的回答产生了8个独特领域，涵盖了家长对儿科HPC中安全护理的定义。
HPC项目中儿童的家长以新颖的方式描述“安全护理”，其中一些与马斯洛的需求层次理论相呼应。将传统医院安全措施用于接受HPC的患者可能会破坏患者的目标或尊严，最终对患者造成伤害。
在界定该人群中儿童的安全时，必须考虑患者及其家庭独特的目标和价值观。未来的研究应继续探索医院和门诊环境中家庭对安全的看法，并寻求确定真正以患者和家庭为中心的安全可衡量指标。
