Palliative care experiences of the patient family

Year 2019, Volume: 44 Issue: Supplement 1, 358 - 365, 29.12.2019

Nazan Torun

https://doi.org/10.17826/cumj.559077

Abstract

Purpose: In order to provide patient-centred and high-quality palliative care services, it is crucial to acknowledge the perspectives and experiences of patients and their families; yet, there are not adequate number of studies about this subject. The aim of this study is to identify the perceptions of patient families of palliative care and to determine the challenges they have encountered based on their experience in the palliative care service.  

Materials and Methods: Qualitative and semi-structured interviews were conducted with 21 patient relatives of patients in the palliative care service. Content analysis method was used for the analysis of qualitative data. Giorgi’s four-step qualitative analysis method was used in qualitative data analysis process. 

Results: It has been determined that patient relatives who had had no prior knowledge on palliative care perceived palliative care services as “the place in which patient care is taught”, “a fundamentally crucial assistance service”, “a service which has recently been introduced to public knowledge and which must be proliferated”. 

Conclusion: Providing care services for end-of-life patients might be burdensome for caregivers. Therefore, the expectations and attitudes of patient families and the difficulties they experience in the palliative care process might provide beneficial insight to inform policy decisions in palliative care interventions. 

Keywords

Palyatif Bakım, bakım verenler, hasta ailesi

Hasta ailesinin palyatif bakım deneyimleri

Abstract

Amaç: Hasta merkezli ve kaliteli palyatif bakım hizmetleri sunmak için, hastaların ve ailelerinin bakış açılarının ve deneyimlerinin bilinmesi büyük öneme sahiptir; ama ne yazık ki bu konuda fazla çalışma bulunmamaktadır. Bu çalışmanın amacı; hasta yakınlarının palyatif bakım hakkındaki algılarını belirlemek ve palyatif bakım merkezlerinde yaşadıkları deneyimleri üzerinden yaşamış oldukları güçlükleri belirlemek amacıyla yapıldı.

Gereç ve Yöntem: Niteliksel yarı yapılandırılmış görüşmeler, palyatif bakım merkezlerinde hastası bulunan 21 hasta yakını ile gerçekleştirildi. Niteliksel verilerin analizinde ise içerik analizi (content analysis) yöntemi kullanıldı. Verilerin çözümlenmesinde Giorgi’nin geliştirmiş olduğu dört aşamalı niteliksel analiz adımları kullanıldı.

Bulgular: Daha önce palyatif bakım konusunda hiçbir bilgisi olmayan hasta yakınları palyatif bakımı “hastanın bakımının öğretildiği yer”, “çok önemli bir yardım hizmeti”, “ilk defa duyulan ancak yaygınlaştırılması gereken bir hizmet” olarak algıladıkları belirlendi. 

Sonuç: Yaşamın sonuna yaklaşan hastalara bakım sağlanması, bakım verenlere önemli bir yük getirebilir. Bu nedenle, hasta yakınlarının bu süreçte yaşamış oldukları zorluklar, beklentileri ve algıları palyatif bakımdaki müdahalelerle ilgili politika kararlarının yönlendirilmesi konusunda yararlı bilgiler sunabilir.

Keywords

Palliative care, caregivers, patient family, burden, perception/attitude

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