TY - JOUR T1 - Ölümcül Hastalığı Olan Çocukların Ailelerinin Güçlendirilmesi TT - Empowerment the Family of Children with A Terminal Illness AU - Üstüner Top, Fadime PY - 2023 DA - August DO - 10.48071/sbuhemsirelik.1213959 JF - Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi JO - SBÜHD PB - University of Health Sciences WT - DergiPark SN - 2667-8357 SP - 145 EP - 150 VL - 5 IS - 2 LA - tr AB - Ailelerin bakım verme rolü kapsamlı ve karmaşıktır. Rutin çocuk bakımına ek olarak ölümcül hastalığı olan çocuğun bakımı bir dizi zorlayıcı duygu, teknik ve beceri içerir. Birçok aile gelecekte bir noktada çocuklarını kaybedeceklerini bilirler, bu da “ölümün gölgesi” altında yaşayan bir çocuğa bakım sağlamanın olağanüstü durumunu yönetmeleri gerektiği anlamına gelir. Bu nedenle aileler, ebeveyn olmanın ve çocuklarına en iyi bakımı sağlamanın yıkıcı zorluğuyla karşı karşıyadır. Ölümcül hastalığa sahip çocuğu olan aileler yeni bir normallik için çalışırlar, çocukları ve aileleri için en iyi bakımı düzenlemek için yavaş yavaş kontrolü ele alırlar. Bazı aileler bu süreci iyi yönetirken, çoğu aile için bu süreç büyük bir yüktür ve sağlık profesyonellerinin desteğine ihtiyaçları vardır. Hastalık seyrinin başlangıcından itibaren ailelere yönelik destek ve rehberlik sağlamak için sağlık profesyonellerin ailelerin kaygısını, kederini, çocukları ile olan ilişkilerini ve baş etme stratejilerini anlamaları gerekir. Bu süreçte ailenin güçlendirilmesi yaklaşımının farkında olmak ve bakım sürecine dahil etmek oldukça önemlidir. Ailenin güçlendirme yaklaşımı aile merkezli bakım, güçlendirme, sağlığı geliştirme ve iş birliği temel bileşenlerinden oluşmaktadır. Hemşireler ailenin güçlendirilmesi yaklaşımı ile hasta ve ailesinin güçlü yönlerinin desteklenmesi ve güçsüz yönlerinin iyileştirilmesini amaçlar KW - Aile KW - çocuk KW - terminal dönem bakımı N2 - The caregiving role of families is extensive and complex. In addition to routine child care, caring for a terminally ill child also involves a range of challenging emotions, technical and skills. Many families know they will lose their child at some point in the future, which means they must manage the emergency of caring for a child living in the "shadow of death". Therefore, families face the devastating challenge of being parents and providing the best care for their children. Terminally ill children’s families work for new normalcy, gradually taking control to organize the best care for their children and families. While some families manage this process well, for most families this process is a huge burden and they need the support of health professionals. To provide support and guidance for families from the beginning of the disease course, health professionals need to understand families’ anxiety, grief, relationships with their children, and coping strategies. In this process, it is very important to be aware of the family empowerment approach and to include this approach in the care process. The empowerment approach of the family consists of the basic components of family-centered care, empowerment, health promotion, and cooperation. The family empowerment approach of nurses aims to support the empowerment of the patients and their families and to empower their weaknesses. CR - Adams, J.A., Anderson, R.A., Docherty, S.L., Tulsky, J.A., Steinhauser, K.E., & Bailey, D.E. (2014). Nursing strategies to support family members of ICU patients at high risk of dying. Heart Lung, 43(5), 406-415. doi: 10.1016/j.hrtlng.2014.02.001 CR - Aldem, M., ve Geçkil, E. (2019). Pediatri hemşireliğinde aile merkezli bakım kavramı ve ilkeleri. E. 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