围产期和新生儿舒缓治疗中的父母期望：范围综述。
Parents' hope in perinatal and neonatal palliative care: a scoping review.
机构信息
Faculty of Health Sciences, Graduate Program in Nursing, University of Brasília (UnB), Brasilia, Federal District, Brazil.
Biological and Health Sciences Center, Graduate Program in Nursing, Federal University of São Carlos (UFSCar), São Carlos, São Paulo, Brazil.
出版信息
BMC Palliat Care. 2023 Dec 18;22(1):202. doi: 10.1186/s12904-023-01324-z.
BACKGROUND
The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death.
OBJECTIVE
To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts.
METHOD
a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies.
RESULTS
Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women's perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents' ability to formulate realistic goals and meaningful interpersonal relationships, respectively.
CONCLUSION
Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life. Health professionals can manage the family's hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study.
PROTOCOL REGISTRATION
背景
在围产期或新生儿期诊断出危及生命的疾病会威胁到父母的希望。希望是一种相互作用和多维的结构，在姑息治疗中，它是生活质量、生存、接受和安宁死亡的决定因素。
目的
绘制围产期和新生儿期姑息治疗背景下父母希望的科学证据图谱。
方法
理论上基于杜法尔特和马托乔的框架进行范围综述，遵循乔安娜·布里格斯研究所的方法建议。搜索于 2023 年 5 月前在 MEDLINE、CINAHL 和 PsycINFO 数据库中进行。搜索返回了 1341 项研究。
结果
合格的论文包括 27 项研究，其中大部分是在美国进行的，采用现象学或文献综述方法。确定了在妊娠和围产期姑息治疗背景下女性观点的核心地位。父母的希望体验在处理信息和诊断的不确定性方面得到体现，与卫生专业人员的互动是一个决定因素，也是一个潜在的令人痛苦的因素。希望被确定为应对的决定因素之一，因此与自主性和父母身份相关联。认知和亲和维度是结果中占主导地位的希望维度，分别对应于父母制定现实目标和有意义的人际关系的能力。
结论
希望是一种力量，能够引导父母应对通过诊断危及孩子生命的疾病所带来的不确定性。卫生专业人员可以通过建立关注希望维度的敏感治疗关系来管理家庭的希望。本研究提出了一些要点，包括对父母和家庭希望进行高级研究和干预的需求。
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