Evaluation of The Opinions of The Pediatric Palliative Care Patients' Families Regarding The COVID-19 Pandemic: A Cross-Sectional Study

Nilgün Harputluoğlu, D. Çubukçu, Sibel Durak, T. Çelik
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Abstract

Aim: While many countries around the world have faced similar challenges in pediatric palliative care as COVID-19, there have also been challenges that vary from country to country. In this study, it was aimed to evaluate the difficulties and opinions of families receiving pediatric palliative care in our country during the pandemic process. Materials and Methods: The study is a cross-sectional survey applied to families followed in the pediatric palliative care service between 01.12.2018 and 01.12.2020. In the study, caring parents were asked to share their experiences and opinions in the last year. Results: Of the 175 families followed, 112 were included in the study. In the first year of the pandemic, it was determined that 42% of the families had no change in their lives, 16.1% had psychological problems, 35.7% had social (quarantine and restrictions) problems and 6.3% had economic problems. When the family order and endurance of those who stated that there were significant changes in their lives in the first year of the pandemic were examined, it was found that these individuals were bored with their families and had difficulty staying at home (2.482; p=0.013). Conclusion: The COVID-19 pandemic process in pediatric palliative care has been milder and has a better prognosis than expected. Psychosocial difficulties are the most prominent areas of distress.
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儿童姑息治疗患者家属对COVID-19大流行的意见评价:一项横断面研究
目的:虽然世界上许多国家在儿科姑息治疗方面面临着与COVID-19类似的挑战,但各国也面临着不同的挑战。在本研究中,旨在评估在大流行过程中,我国家庭接受儿科姑息治疗的困难和意见。材料与方法:本研究为横断面调查,适用于2018年12月1日至2020年12月1日期间在儿科姑息治疗服务中随访的家庭。在这项研究中,有爱心的父母被要求分享他们去年的经历和观点。结果:在随访的175个家庭中,有112个家庭被纳入研究。在大流行的第一年,确定42%的家庭生活没有变化,16.1%有心理问题,35.7%有社会(隔离和限制)问题,6.3%有经济问题。当对那些声称在大流行的第一年生活发生重大变化的人的家庭秩序和忍耐力进行检查时,发现这些人对家庭感到厌倦,难以呆在家里(2.482;p = 0.013)。结论:2019冠状病毒病在儿童姑息治疗中的流行过程较预期温和,预后较预期好。心理困难是最突出的痛苦领域。
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