Amyotrofik Lateral Sklerozlu Hasta Yakınlarının Evde Bakıma Yönelik Bakım Verme Yükünün Belirlenmesi

Öz

Amaç: Amyotrofik Lateral Sklerozlu hasta yakınlarının evde bakıma yönelik, bakım verme yükünün belirlenmesi amacıyla yapıldı. Yöntemler: Araştırma tanımlayıcı tiptedir. Araştırma, Eylül 2023 ve Kasım 2024 tarihleri arasında Türkiye’de Amyotrofik Lateral Skleroz-Motor Nöron Hastalığı Derneğine kayıtlı araştırmaya katılmaya gönüllü 260 bakım veren bireyler ile yürütüldü. Veri toplama aracı olarak Sosyo-Demografik Anket Formu ile Zarit Bakım Verme Yükü Ölçeği kullanıldı. Verilerin değerlendirilmesinde IBM SPSS Statistics for Windows, Version 22.0 (SPSS INC., Chicago, IL, USA) istatistik programı kullanıldı. Verilerin analizinde, frekans, yüzde, ortalama ve standart sapma kullanıldı. İleri analizlerde bağımsız gruplar t-testi, Anova ve posthoc Tukey, LSD analizleri kullanıldı. Bulgular: Bakım yükü toplam puan ortalaması 33,96±18,83 olarak bulundu. Bakım verenlerin %37,3’ünün orta, %26,2’sinin şiddetli, %10’unun çok şiddetli düzeyde bakım yükü olduğu belirlendi. Kadınların, üniversite mezunlarının, evde bakıma yönelik eğitim almak isteyenlerin, hemşire bilgilendirmesinin yetersiz olduğunu düşünenlerin, kendi sağlığını kötü algılayanlarının ve bakım verme nedeniyle çalışmayı bırakanlarının bakım verme yükünün daha fazla olduğu belirlendi. Sonuç: Bu çalışmada, hasta yakınlarının yarısından fazlasının, bakım verme yükünün orta ve çok şiddetli olduğu bulundu. Özellikle evde bakım eğitimi almak isteyen ve kendi sağlığına yeterince zaman ayıramadığını belirten bireylerin bakım yükünün fazla olduğu görülmüştür. Bu doğrultuda hemşirelerin, bakım verme yükü yüksek olan bireylere özel eğitim ve danışmanlık programları planlanması, hemşirelik bölüm ve dernekleri ile iş birliği ile eğitim programı geliştirmeleri önerilebilir. Ayrıca, eğitimlerin online olarak herkese erişilebilir yapılması, bakım vericilere yönelik nicel ve nitel araştırmalara ağırlık verilmesi, sağlık politikalarının geliştirilmesinde bakım vericilerin ve hemşirelik derneklerinin ortak amaç doğrultusunda çalışmaları önerilebilir.

Anahtar Kelimeler

• Amyotrofik Lateral Skleroz
• Bakım Yükü
• Bakım Verici
• Evde Bakım

Determination of the Care Burden of Relatives of Patients with Amyotrophic Lateral Sclerosis for Home Care

Öz

Objective: It was conducted to determine the caregiving burden of relatives of patients with Amyotrophic Lateral Sclerosis regarding home care. Methods: The research is descriptive. The study was conducted between September 2023 and November 2024 in collaboration with the Amyotrophic Lateral Sclerosis-Motor Neuron Disease Association with 260 caregivers in Turkey who volunteered to participate in the study. A 28-question Socio-demographic Questionnaire and the Zarit Caregiving Burden Scale were used as data collection tools. IBM SPSS Statistics for Windows, Version 22.0 (SPSS INC., Chicago, IL, USA) statistical program was used to evaluate the data. Frequency, percentage, mean and standard deviation were used to analyze the data. Independent groups t-test, ANOVA and posthoc Tukey and LSD analyses were used for further analysis. Results: The total average care burden was found to be 33.96±18.83. It was determined that 37.3% of caregivers had a moderate care burden, 26.2% had a severe care burden, and 10% had a very severe care burden. It was determined that women, university graduates, those wishing to receive training in home care, those who considered nursing information to be inadequate, those who perceived their own health to be poor, and those who had stopped working due to caregiving had a greater care burden. Conclusion: This study found that more than half of the patient's relatives experienced moderate to very severe caregiving burden. Individuals who requested home care training and reported insufficient time for their own health were found to have a high caregiving burden. Therefore, nurses are advised to plan specialized training and counseling programs for individuals with high caregiving burden and to collaborate with nursing departments and associations to develop training programs. Furthermore, it is recommended that training be made accessible to everyone online, that quantitative and qualitative research on caregivers be prioritized, and that caregivers and nursing associations work toward a common goal in developing health policies.

Anahtar Kelimeler

• Amyotrophic Lateral Sclerosis
• Home Care
• Burden of Care
• Caregiver

Kaynakça

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