THE EFFECTS OF THE COVID-19 PANDEMIC ON PEOPLE WITH RARE DISEASES

Öz

Aim/Background: COVID-19 has negative effects on both healthcare and social service delivery systems. During the pandemic, some groups of society have found themselves in a position in which their disadvantage grew bigger. One of these groups include people with rare diseases. 30 million people with a rare disease in Europe and 300 million worldwide were among the most vulnerable population groups during the pandemic. Because, rare diseases that are chronic, complex, degenerative and cause serious sensation loss and create special care needs. This study aims to examine how people with rare diseases are affected by COVID-19. Method: Scopus, Web of Science, Networked Digital Library of Theses & Dissertations, ProQuest, and Google Scholar databases reviewed using the keywords 'rare diseases and COVID-19', 'rare diseases and coronavirus' and 'the impact of COVID-19 on rare diseases' in Turkish and English. As a result, 40 studies were found and 18 articles were determined to be in accordance with the inclusion criteria. Results: The findings of the study show that people with rare diseases experience problems in terms of access to healthcare systems, changing daily life dynamics, access to holistic care services, and psychosocial aspects. Severe problems such as restriction of diagnosis, treatment, and rehabilitation services in terms of access to healthcare services are mentioned. In terms of the change of daily life dynamics and access to holistic care, there are disruptions in care services, family members assuming the responsibility of providing care, and families having economic hardships in this process. Psychosocial difficulties include increased levels of anxiety, fear and depression, and limitations in accessing mental health services. Conclusion: It is recommended that service delivery systems should be improved to eliminate the biopsychosocial and economic difficulties of people with rare diseases.

Anahtar Kelimeler

• COVID-19
• Rare Diseases
• Disadvantaged groups

COVID-19 PANDEMİSİNİN NADİR HASTALIĞI OLAN BİREYLER ÜZERİNDEKİ ETKİSİ

Öz

Amaç: COVID-19’un hem sağlık hem de sosyal hizmet sunum sistemleri üzerinde olumsuz etkileri bulunmaktadır. Pandemi sürecinde toplumun bazı kesimleri dezavantajlı olma konumunun daha da derinleştiği bir noktaya taşınmıştır. Bu gruplardan biri de nadir hastalığı bulunan kişileri kapsamaktadır. Nadir hastalığı bulunan Avrupa'da 30 milyon, dünya genelinde ise 300 milyon kişi, pandemi sırasında en savunmasız nüfus grupları arasında yer almıştır. Çünkü genellikle kronik, karmaşık, dejeneratif ve ciddi şekilde yeti yitimlerine ve engelliliğe sebep olan nadir hastalıklar, özel bakım ihtiyaçları yaratmaktadır. Bu çalışma, nadir hastalığı bulunan kişilerin COVID-19'dan nasıl etkilendiğini incelemeyi amaçlamaktadır. Yöntem: Scopus, Web of Science, Networked Digital Library of Theses & Dissertations, ProQuest ve Google Scholar veri tabanları ‘nadir hastalıklar ve COVID-19’, ‘nadir hastalıklar ve koronavirüs’ ve ‘COVID-19'un nadir hastalıklar üzerindeki etkisi’ anahtar kelimeleri kullanılarak Türkçe ve İngilizce olarak taranmıştır. Tarama sonucunda 40 çalışmaya ulaşılmış ve araştırma kapsamına alma kriterlerine uygun 18 makale belirlenmiştir. Bulgular: Çalışmanın bulguları, nadir hastalığı olan hastaların sağlık sistemlerine erişim, günlük yaşam dinamiklerinin değişmesi ve bütünsel bakım hizmetlerine erişim ve psikososyal yönden sorunlar yaşadıklarını göstermektedir. Sağlık hizmetlerine erişim açısından teşhis, tedavi ve rehabilitasyon hizmetlerinin kısıtlanması gibi ciddi sorunlar belirtilmektedir. Günlük yaşam dinamiklerinin değişimi ve bütüncül bakıma erişim açısından, bakım hizmetlerinin aksaması, bakım verme sorumluluğunu aile üyelerinin üstlenmesi ve bu süreçte ailelerin ekonomik olarak zorlanması bulunmaktadır. Psikososyal güçlükler arasında ise anksiyete, korku ve depresyon düzeylerinde artış ile ruh sağlığı hizmetlerine erişimde kısıtlılıkların yaşanması bulunmaktadır. Sonuç: Nadir hastalığı olan bireylerin biyo-psiko-sosyal ve ekonomik yönlerden yaşadığı zorlukların ortadan kaldırılmasında hizmet sunum sistemlerinin geliştirilmesi önerilmektedir.

Anahtar Kelimeler

• COVID-19
• Nadir Hastalıklar
• Dezavantajlı Gruplar

Kaynakça

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