NADİR HASTALIKLARIN AİLELER ÜZERİNDEKİ PSİKO-SOSYAL, FİZİKSEL VE EKONOMİK ETKİLERİ

Yıl 2019, Sayı: 14, 80 - 94, 30.12.2019

Hüsnünur Aslantürk , Murat Derin Serdar Arslan

https://doi.org/10.46218/tshd.1139395

Cited By: 1

Öz

Nadir hastalıklar, nüfusun geneline oranla daha az sayıda insanda görülen (1/2000 ve daha az kişide) hastalıkları ifade
etmektedir. Nadir hastalıklar ciddi, kronik, ilerleyici ve yıpratıcı özelliklere sahip olmakla birlikte bir çok hastalık için tıbbi ve
bilimsel bilgi eksikliği mevcuttur, yeterli-uygun tedavi seçenekleri bulunmamaktadır. Tüm bu özellikleri taşıyan bir hastalığa
sahip olmanın hem hasta hem de ailesi üzerinde psiko-sosyal, fiziksel ve ekonomik etkileri bulunmaktadır.
Nadir hastalığa sahip bir bireyin ailesi olmak, hastalık sürecinin etkilerini doğrudan ve dolaylı olarak yaşamak anlamına
gelmektedir. Fiziksel olarak aileler hastalığın tanı ve tedavi sürecinde kilo kaybı, iştahsızlık, yorgunluk, uyku problemleri gibi
bir çok fiziksel etkiyi yaşamaktadırlar. Psikolojik olarak aile içinde teşhis süreci çok uzun, tedavi olanakları kısıtlı ya da olmayan
nadir bir hastalığın bulunması, aile üyeleri için depresyon, kaygı, korku, kızgınlık, şüphe, belirsizlik gibi bir çok sonuca yol
açmaktadır. Sosyal açıdan arkadaş sayılarının azalmasına, sosyal destek mekanizmalarının zayıflamasına ve sosyal olarak
toplumdan izole hissetmelerine neden olmaktadır. Ailelerin yaşadığı en görünür etkilerden olan ekonomik etkiler konusunda
ise aileler, teşhis ve tedavi imkanlarına erişim güçlüğü, işgücü kaybı gibi kendilerini ekonomik olarak baskılayacak bir çok farklı
etkiye maruz kalmaktadırlar. Bu çalışmanın amacı, nadir bir hastalığa sahip olmanın aile üzerindeki psiko-sosyal, fiziksel ve
ekonomik etkilerini tartışmaktır.

Anahtar Kelimeler

Nadir hastalıklar, aile, fiziksel etkiler, psiko-sosyal etkiler, ekonomik etkiler., Nadir hastalıklar, aile, fiziksel etkiler, psiko-sosyal etkiler, ekonomik etkiler.

Kaynakça

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