'What if I Die Before Him?' Concerns of Caregivers in Palliative Care

Öz

Background/Aims: Caregivers are family members who provide unpaid assistance to their ill spouses. In Turkey, family caregiving, engagement, and support are needed when patients are hospitalized. This study aims to better understand the feelings of caregivers behind their behaviors in a terrier palliative care setting. Methods: This research is a cross-sectional qualitative study designed with phenomenology. Five family caregivers who volunteered to participate were interviewed face-to-face. Inclusion criteria were adult informal caregivers who currently provided care to the patient at home and in the hospital. Results: The family caregivers consist of five spouses with a mean age of 44.8 ± 4.80 years. Each caregiver is a female and the spouse of the patient. Of the patients diagnosis was Alzheimer’s disease, dementia, gastric cancer, and stroke, respectively. The caregiving time was approximately 2.79 ± 1.62 years. Four themes and eleven subthemes were indicated: Concerns about themselves: Overestimating their health care problems, Anxiety about staying strong; Consequences of the patient: Remembering the patient like a “hero”; Acceptance of the situation Fear of “finding him death” Challenges about caregiving Sacrificing from life Excessive responsibility Embarrassment from diaper care Lack of orientation for caregiving at first Coping strategies Devine providence Religious beliefs. Conclusions: The findings of the study indicate that family caregivers have concerns about themselves and the consequences of their roles. Even if they try to cope with spirituality, healthcare providers can support them by recognizing their essential roles.

Anahtar Kelimeler

• palliative care
• family caregivers
• concerns
• Spirituality

‘Ya Ondan Önce Ölürsem?' Palyatif Bakımda Bakımverenlerin Endişeleri

Öz

Giriş: Bakımverenler, hastalarına ücretsiz yardım sağlayan aile üyeleridir. Türkiye'de hastalar hastaneye yatırıldığında aile bakımı, katılım ve desteğe ihtiyaç duyulmaktadır. Bu çalışma, palyatif bakım ortamında bakımverenlerin davranışlarının ardındaki duygularını daha iyi anlamayı amaçlamaktadır. Yöntemler: Bu araştırma fenomenoloji ile tasarlanmış kesitsel nitel bir çalışmadır. Katılmak için gönüllü olan beş yüz yüze görüşme yapıldı. Dahil etme kriterleri, hastaya evde ve hastanede bakım sağlayan yetişkin refakatçiler olarak belirlendi. Bulgular: Bakımverenlerin yaş ortalaması 44,8 ± 4,80 yıl olan beş kadından oluşmaktadır. Hastaların tanısı sırasıyla Alzheimer hastalığı, demans, mide kanseri ve inme idi. Bakım süresi yaklaşık 2,79 ± 1,62 yıldı. Dört tema ve on bir alt tema belirtildi: Kendileriyle ilgili endişeler: Sağlık sorunlarını abartmak, Güçlü kalma kaygısı; Hastaya bağlı sonuçlar: Hastayı kahraman gibi hatırlamak; Durumun kabulü “Onu ölü bulma” korkusu ; Bakıcılıkla ilgili zorluklar Hayattan fedakarlık, Aşırı sorumluluk ,Bebek bezi bakımından utanç ,bakım vermeye başladığında oryantasyon eksikliği Başa çıkma stratejileri Dini inançlar. Sonuç: Çalışmanın sonucunda, bakımverenlerin kendileri ve rollerindeki sonuçlar hakkında endişeleri olduğunu göstermektedir. Maneviyatla başa çıkmaya çalışsalar bile, sağlık hizmeti sağlayıcıları temel rollerini kabul ederek onlara destek olabilirler.

Anahtar Kelimeler

• palyatif bakım
• bakımverenler
• endişeler
• spirtualizm

Kaynakça

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