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儿科姑息治疗中非宗教有神论家庭的精神需求和死亡沟通:一项定性研究。

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study.

机构信息

Center for Clinical Epidemiology and Evidence-Based Medicine, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing, China.

School of Nursing, Capital Medical University, Beijing, China.

出版信息

Palliat Med. 2020 Apr;34(4):533-540. doi: 10.1177/0269216319896747. Epub 2020 Jan 23.

Abstract

BACKGROUND

Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.

AIM

To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.

DESIGN

Qualitative study.

SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.

RESULTS

Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.

CONCLUSION

Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.

摘要

背景

无论患者是否隶属于某个宗教组织,都应向其提供精神支持。

目的

了解非宗教有神论父母的灵性,并探讨中国大陆非宗教有神论父母如何与绝症患儿讨论死亡。

设计

定性研究。

地点/参与者:本研究在北京儿童医院血液肿瘤科中心进行。本研究的参与者包括 16 位丧亲的父母。

结果

参与者描述自己是非宗教的,但表现出对特定宗教的倾向。父母在面临危及生命的疾病时寻求宗教支持,并将宗教信仰视为在经历孩子去世后获得心理和精神安慰的重要途径。宗教支持可以部分满足父母的精神需求。父母的精神需求仍需要其他支持,如丧亲服务、死亡教育和家庭支持小组。一些父母表示,很难找到与孩子讨论死亡的方式。对于来自非宗教有神论家庭的患者,他们对死亡的理解更加复杂,可能与无神论有关。

结论

宗教支持可能是非宗教有神论绝症患儿父母精神支持的一个元素。应合理整合宗教支持和非宗教支持等多种策略,将其纳入非宗教有神论家庭的精神支持中。在与患者讨论死亡之前,应评估其对死亡的个人信仰。

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