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Parental challenges when children are diagnosed with life-limiting illnesses in a context of poverty

机译:在贫困中被诊断出患有致命性疾病的父母的挑战

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As the health of children diagnosed with life-limiting conditions deteriorates, families may begin to consider palliative care. In Romania, the appropriate legislative environment for hospice and palliative care was only created in 2003, and as a result, research remains scarce. Existing research focused on retrospective evaluations of palliative or hospice care from the perspective of professionals directly involved in the care process. Only one study explored the patients' or their families' perspectives on end-of-life care, by focusing on communicational barriers.Moreover, no study has been initiated on children's paediatric hospice or palliative care in Romania. As part of a larger study examining the experiences of parents with paediatric palliative care in a context of poverty - such as quality of paediatric palliative care, challenges, patterns of emotional coping, division of household activities, changes in meaningful social interactions, changes in the outlook of life and so on - the specific aim of this article was to explore parental challenges when children were diagnosed with life-limiting illnesses.
机译:随着诊断为有生命限制条件的儿童的健康状况恶化,家庭可能会开始考虑姑息治疗。在罗马尼亚,仅在2003年才为临终关怀和姑息治疗创造了适当的立法环境,因此,研究仍然很稀少。现有研究集中于从直接参与护理过程的专业人员的角度对姑息性或临终关怀护理进行回顾性评估。仅有一项研究通过关注沟通障碍来探讨患者或家属对临终关怀的看法,此外,罗马尼亚尚未开展有关儿童儿科临终关怀或姑息治疗的研究。作为一项更大的研究的一部分,该研究考察了贫困情况下父母接受儿科姑息治疗的经历-例如儿科姑息治疗的质量,挑战,情绪应对方式,家庭活动的划分,有意义的社会互动的变化,生活前景等-本文的具体目的是探讨当儿童被诊断出患有致命性疾病时的父母挑战。

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