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“我们信仰上帝”:波兰罕见病患儿父母宗教信仰与其照护经历关联的探索性研究。

"In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.

机构信息

Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Rokietnicka 7, St, 60-806, Poznań, Poland.

Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.

出版信息

J Relig Health. 2024 Dec;63(6):4079-4109. doi: 10.1007/s10943-024-02095-4. Epub 2024 Aug 5.

DOI:10.1007/s10943-024-02095-4
PMID:39103591
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11576783/
Abstract

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach.

摘要

大多数患有罕见病的儿童都由其家庭成员照顾,但由于症状的复杂性和严重性,照顾这样的孩子需要付出极大的努力,这会给照顾者带来严重的身体、情感、社会和经济负担。尽管宗教可能是一种积极的应对策略,但关于宗教在帮助照顾者应对波兰护理负担相关压力方面的作用,我们知之甚少。因此,我们调查了 925 名波兰罕见病儿童的家庭照顾者,以了解照顾者的宗教信仰与他们的照顾体验之间的关系。研究结果表明,父母的宗教信仰与更积极的照顾体验、更高的生活质量和更轻的照顾负担有关。虽然宗教照顾者报告说他们的情绪压力较小,并且更频繁地强调孩子的疾病对他们生活的鼓舞作用,但非宗教照顾者则更频繁地感到角色束缚和角色过载。由于宗教可能是心理健康问题和护理负担的一个力量来源和保护因素,医疗保健专业人员应该意识到宗教和精神关怀的重要性,并且应该将照顾者的宗教信仰视为整体关怀的一个组成部分。

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Children (Basel). 2023 Aug 19;10(8):1410. doi: 10.3390/children10081410.
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Living with a rare disease - experiences and needs in pediatric patients and their parents.与罕见病共存——儿科患者及其父母的经历和需求。
Orphanet J Rare Dis. 2023 Aug 11;18(1):242. doi: 10.1186/s13023-023-02837-9.
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Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria.职业活动、性别与疾病相关情绪:对苯丙酮尿症患儿家长照料体验的影响。
Mol Genet Metab Rep. 2023 Jul 15;36:100992. doi: 10.1016/j.ymgmr.2023.100992. eCollection 2023 Sep.
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The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.养育患有危及生命疾病的儿童的精神维度:混合方法系统评价。
Palliat Med. 2023 Oct;37(9):1303-1325. doi: 10.1177/02692163231186173. Epub 2023 Jul 17.
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Gender and burden differences in family caregivers of patients affected by ten rare diseases.性别和负担差异:十种罕见病患者的家庭照料者。
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