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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.
Purpose: COVID-19 has adverse effects on both health and social services presentation systems. During the pandemic process, some sections of society have moved to a point where the position of being disadvantaged is even deeper. One of these groups includes people with rare diseases. 30 million people in Europe with rare diseases and 300 million in the world were among the most defensive populations during the pandemic. Because rare diseases, which are often chronic, complex, degenerative and seriously causing fat loss and disability, create special care needs. This study aims to study 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 are scanned in English and English using the keywords 'Rare diseases and COVID-19', 'Rare diseases and coronavirus' and 'The impact of COVID-19 on rare diseases'. The scan results have reached 40 studies and identified 18 articles in accordance with the criteria for receiving the research scope. The findings: The findings of the study show that patients with rare diseases have access to the health systems, a change in daily life dynamics and access to comprehensive care services and psychosocial issues. There are serious problems with regard to access to health services, such as the restriction of diagnosis, treatment and rehabilitation services. In terms of the change in daily life dynamics and access to comprehensive care, it is the interruption of care services, the responsibility of care of the family members and the economic difficulties of the families in this process. Psychosocial difficulties include an increased level of anxiety, fear and depression and restrictions in access to mental health services. Result: The development of service offering systems is recommended to eliminate the challenges that individuals with rare diseases experience from the bio-psycho-social and economic aspects.
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.
Field : Sağlık Bilimleri
Journal Type : Uluslararası
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