BACKGROUND:Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. METHODS:This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. RESULTS:A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. CONCLUSIONS:Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.

译文

背景:灵性可以赋予生命意义,在复杂的情况下提供支持和指导。尽管它在姑息治疗中很重要,但是灵性在唯一姑息治疗下对家庭照顾者的作用在文献中并未得到足够的重视。我们的目标是解决在姑息治疗下患者家属的精神状态与情绪负担之间的相关性。
方法:这项横向研究是在巴西圣保罗的一家三级私立教学医院进行的。该研究仅包括接受姑息治疗的患者的家庭成员。只有一名照顾患者至少2个月的护理人员才被邀请参加。家庭成员回答了以下问卷:WHOQOL灵性,宗教和个人信仰(SRPB),Zarit Burden访谈(ZBI)和自我报告问卷(SRQ-20)。如果患者居住在长期住院机构中,则将其排除在外。连续变量用中位数和四分位数表示,并用两组的Kruskal-Wallis检验,由Bonferroni调整的Muller-Dunn后检验或Mann-Whitney检验进行分析。我们使用多元线性回归来确定照顾者负担的独立预测因子。
结果:患者入院后的中位数为8 [4-13.25]天,总共采访了178个家庭成员。几乎40%的家庭负担很高。信念和人生意义是得分最高的方面,两个方面的中位数为4.50 [4.00-5.00]。 Zarit得分与所有WHOQOL-SRPB方面之间均呈反比关系,这表明灵性越低,情感负担就越大。内心的和平是与负担相关的最强有力的保护因素。
结论:心理-社会-精神互动可以改善接受姑息治疗的患者的家庭护理人员的应对能力,从而解决了在提供整体姑息治疗服务方面的重大缺口。

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