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

Year 2022, Volume: 10 Issue: 3, 123 - 130, 31.12.2022

Nilgün Harputluoğlu Duygu Çubukçu Sibel Durak Tanju Çelik

https://doi.org/10.21765/pprjournal.1192793

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

References

• 1. Li Q, Guan X, Wu P, et al. Early Transmission Dynamics in Wuhan, China, of Novel Coronavirus-Infected Pneumonia. N Engl J Med. 2020 March;382(13):1199-207.
• 2. World Health Organization. WHO director-general’s statement on IHR Emergency Committee on Novel Coronavirus (2019-nCoV). Accessed 03 March 2021.
• 3. World Health Organization. Coronavirus disease 2019 (COVID19): situation report – 42Accessed 03 March 2021.
• 4. World Health Organization. Coronavirus (COVID-19) Dashboard. Overview Data Table. Accessed 03 March 2021.
• 5. T.C. Sağlık Bakanlığı. COVID-19 Bilgilendirme Platformu. https://covid19.saglik.gov.tr/ Accessed 03 March 2021.
• 6. Tezer H, Bedir Demirbağ T. Novel coronavirus disease (COVID-19) in children. Turk J Med Sci. 2020 Apr;50:592-603. 7. Barouki R, Kogevinas M, Audouze K, et al. The COVID-19 pandemic and global environmental change: Emerging research needs. Environ Int. 2021 Jan;146:106272.
• 8. Nakra NA, Blumberg DA, Herrera-Guerra A, Lakshminrusimha S. Multi-System Inflammatory Syndrome in Children (MIS-C) Following SARS-CoV-2 Infection: Review of Clinical Presentation, Hypothetical Pathogenesis, and Proposed Management. Children (basel). 2020 Jul;7(7): 69.
• 9. Hun D, Li H, Lu X-X, et al. Clinical features of severe pediatric patients with coronavirus disease 2019 in Wuhan:a single center's observational study. World J Pediatr. 2020 Jun;16(3):251-9.
• 10. Talawadekar P, Khanna S, Dinand V, Fernandes P, Deodhar J, MuckadenMA. How the COVID-19 Pandemic Experience has Affected Pediatric Palliative Care in Mumbai. Indian J Palliat Care. 2020 Jun;26(Suppl 1):17-20.
• 11. World Health Organization . Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID19). Accessed 03 March 2021.
• 12. T.C. Sağlık Bakanlığı. COVID-19 Durum Raporu Türkiye. Accessed 03 March 2021.
• 13. Lu X, Zhang L, Du H, Zhang J, Li YY, Qu J et al. SARS-CoV-2 Infection in Children. N Engl J Med. 2020;382:1663–5.
• 14. Wang P, Lu J, Jin Y, Zhu M, Wang L, Chen S. Epidemiological characteristics of 1212 COVID-19 patients in Henan, China. 2020.
• 15. Al-Dmour H, Masa'deh R, Salman A, Abuhashesh M, Al-Dmour R. Influence of Social Media Platforms on Public Health Protection Against the COVID-19 Pandemic via the Mediating Effects of Public Health Awareness and Behavioral Changes: Integrated Model. J Med İnternet Res 2020 Aug;22(8): e19996.
• 16. Akandere, M., Acar, M., Baştuğ, G. Zihinsel ve Fiziksel Engelli Çocuğa Sahip Anne ve Babaların Yaşam Doyumu ve Umutsuzluk Düzeylerinin İncelenmesi. Selçuk Üniversitesi Sosyal Bilimler Enstitüsü Dergisi. 2009;22:23-32.
• 17. Talawadekar P, Khanna S, Dinand V, Fernandes P, deodhar J, Muckaden MA. How the COVID-19 Pandemic Experience has Affected Pediatric Palliative Care in Mumbai. Indian J Palliat Care. 2020 Jun;26(Suppl 1):17-20.
• 18. Nicholas DB, Belletrutti M, Dimitropoulos G, Katz LS, Rapoport A, Urschel S et al. Perceived Impacts of the COVID-19 Pandemic on Pediatric Care in Canada: A Roundtable Discussion. Glob Pediatr Helath 2020 Sep;7:2333794X20957652.
• 19. Harputluoglu N, Özdemir SA, Yılmaz Ü, Çelik T. Evaluation of primary caregiver parents' quality of life in pediatric palliative care with the WHOQOL-Bref (TR). Turk Arch Pediatr 2021;56(5):429-39.
• 20. Şıpoş R, Predescu E, Mureşan G, Iftene F. “The Evaluation of Family Quality of Life of Children with Autism Spectrum Disorder and Attention Deficit Hyperactive Disorder”, Applied Medical Informatics. 2021;30(1):1-18.
• 21. Taylor S. Pandemic Psychology: Prepare for the Next Global Infectious Disease Outbreak. Cambridge Scholars Publications; Newcastle upon Tyne, United Kingdom: 2019.
• 22. Catalan J, Burgess A, Pergami A, Hulme N, Gazzard B, Phillips R. The psychological impact on staff of caring for people with serious diseases: the case of HIV infection and oncology. J Psychosom Res. 1996 Apr;40(4) :425-35.
• 23. Lim GY, Tam WW, Lu Y, Ho CS, Zhang MW, Ho RC. Prevalence of Depression in the Community from 30 Countries between 1994 and 2014. Sci Rep 2018; 8(1) :2861.
• 24. Guo X, Meng Z, Huang G, et al. Meta-analysis of the prevalence of anxiety disorders in mainland China from 2000 to 2015. Sci Rep. 2016 Jun;16(6):28033.
• 25. Choi EPH, Hui BPH, Wan EYF. Depression and Anxiety in Hong Kong during COVID-19. Int J environ Res Public Helath. 2020 May;17(10): 3740.
• 26. Smith GD, Ng F, Ho Cheung Li W. COVID-19: Emerging compassion, courage and resilience in the face of misinformation and adversity. J. Clin. Nurs. 2020 May;29(9-10):1425-8.
• 27. Tedeschi RG, Calhoun LG. Posttraumatic growth: Conceptual foundations and empirical evidence. Psychol Inq. 2004;15(1):1-18.