Ruiz-Gil Tania, Ródenas-Rigla Francisco
Polibienestar Research Institute, University of Valencia, 46022 Valencia, Spain.
Children (Basel). 2023 Dec 13;10(12):1922. doi: 10.3390/children10121922.
Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed to identify the variables associated with the quality of care of PPC patients in Spain, focusing specifically on three areas: structure and process of care, psychological aspects of care, and care of patients approaching the end of life. The review was conducted following PRISMA-ScR guidelines. Searches were performed in the PubMed, Scopus, Web of Science, Embase, ProQuest, and Dialnet databases covering the period extending from January 2000 to May 2023. Finally, 35 studies were identified for the complete review. A total of 30 studies include variables associated with the structure and process of care, 20 include variables associated with psychological aspects of care, and 23 studies integrate variables related to patient care at the end of life. Analysis suggests that enhancing professional training in aspects such as communication with patients and families, creating intimate spaces with flexible visiting hours, increasing emotional support, promoting frequent contact with healthcare teams, and transparently communicating about illness and imminent death to both families and minors could improve the quality of PPC.
姑息治疗（PC）可提高面临危及生命疾病的患者及其家庭的生活质量。虽然PC在成人中已得到广泛应用，但并非所有做法都适用于儿科。因此，必须确定儿科姑息治疗（PPC）的具体质量指标。本范围综述旨在确定与西班牙PPC患者护理质量相关的变量，特别关注三个领域：护理的结构和过程、护理的心理方面以及临终患者的护理。该综述按照PRISMA-ScR指南进行。在PubMed、Scopus、Web of Science、Embase、ProQuest和Dialnet数据库中进行检索，检索时间跨度为2000年1月至2023年5月。最后，确定了35项研究进行全面综述。共有30项研究包括与护理结构和过程相关的变量，20项包括与护理心理方面相关的变量，23项研究纳入了与临终患者护理相关的变量。分析表明，加强在与患者及其家庭沟通等方面的专业培训、创造探视时间灵活的私密空间、增加情感支持、促进与医疗团队的频繁接触以及向家庭和未成年人透明地传达疾病和即将到来的死亡情况，可能会提高PPC的质量。
