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

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.

Keywords

• COVID-19
• Pandemic
• Pediatric palliative care

Pediatrik Palyatif Bakım Hasta Ailelerinin COVID-19 Pandemisine İlişkin Görüşlerinin Değerlendirilmesi: Kesitsel Bir Çalışma

Abstract

Amaç: Dünya çapında birçok ülke pediatrik palyatif bakımda COVID-19 ile benzer zorluklar yaşarken, ülkeden ülkeye değişen zorluklar da olmuştur. Bu çalışmada pandemi sürecinde ülkemizdeki pediatrik palyatif bakım alan ailelerin yaşadıkları güçlüklerin ve görüşlerinin değerlendirilmesi amaçlanmıştır. Materyal ve Metod: Araştırma, 01.12.2018 ile 01.12.2020 tarihleri arasında pediyatrik palyatif bakım servisinde takip edilen ailelere uygulanan kesitsel bir anket çalışmasıdır. Araştırmada bakım veren ebeveynlerden son bir yıldaki deneyimlerini ve görüşlerini paylaşmaları istenmiştir. Bulgular: Takip edilen 175 aileden 112'si çalışmaya dahil edildi. Pandeminin ilk yılında ailelerin %42'sinin hayatında bir değişiklik olmadığı, %16,1'inin psikolojik, %35,7'sinin sosyal (karantina ve kısıtlamalar) ve %6,3'ünün ekonomik sorunları olduğu belirlendi. Pandeminin ilk yılında hayatlarında önemli değişiklikler olduğunu belirtenlerin aile düzeni ve tahammülleri incelendiğinde bu bireylerin ailelerinden sıkıldıkları ve evde kalmakta zorlandıkları saptandı (2.482; p= 0.013). Sonuç: Pediatrik palyatif bakımda COVID-19 pandemi süreci beklenenden daha hafif ve daha iyi prognozlu seyretmiştir. Psikososyal zorluklar, en belirgin sıkıntı alanlarıdır

Keywords

• COVID-19
• Pandemi
• Pediatrik palyatif bakım

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