Assessing Symptoms and Knowledge Levels among Caregivers of Children Receiving Treatment for Rheumatic Diseases

Yıl 2025, Cilt: 14 Sayı: 1, 94 - 103, 23.03.2025

Canan Sarı , Mukaddes Kalyoncu , Birsel Canan Demirbağ

Öz

The study aimed to assess knowledge level of caregivers responsible for children with rheumatic diseases regarding both their symptoms and diseases themselves. This descriptive study, including 115 caregivers of children diagnosed with rheumatic diseases at the pediatric rheumatology outpatient clinic of hospital in the Black Sea Region of Türkiye, was conducted between January 20 and June 10, 2023. Data were collected “Participant Information Form” and “Symptoms and Knowledge Level Form for Rheumatic Diseases.” In the analysis of the data, number (n), percentage (%), mean, standard deviation, and independent sample t-test were used. The average age of the children was 10.58 ± 4.43 years, Juvenile idiopathic arthritis accounted for 40.9% of the medical diagnoses. The onset of symptoms occurred at 36.13 ± 34.59 months and the treatment duration was 30.04 ± 31.80 months (min: 1 month; max: 156 months). 73% of caregivers were women, mostly mothers, and 59.1% experienced joint pain associated with rheumatic diseases. 81.7% of participants received verbal information or education from their doctor, while 25.2% primarily sought information online (95.4%) due to perceived inadequacy in the provided education. Caregivers who obtained information from the internet demonstrated a higher level of knowledge about the disease compared to those who did not (p< 0.05). It is recommended that health professionals implement scheduled and systematic health training sessions for caregivers, and there should be support for academicians, professional organizations in establishing websites aimed at providing accurate information to caregivers about diseases via the internet.

Anahtar Kelimeler

Caregiver, Knowledge level, Child, Rheumatic disease, Symptom

Etik Beyan

The study adhered to ethical guidelines, obtaining approval from the Karadeniz Technical University Faculty of Medicine Scientific Research Ethics Committee (Decision No. E-24237859-386). In order to conduct the study, institutional permission was obtained from Karadeniz Technical University Farabi Hospital (Decision No. E-44710342-044-7051).Caregivers were verbally informed about the study’s purpose, and their verbal and written informed consent was obtained prior to data collection. The study was conducted in accordance with the Declaration of Helsinki.

Destekleyen Kurum

Çalışmayı destekleyen kurum bulunmamaktadır.

Teşekkür

Çalışmaya dahil olan tüm bakım vericilere teşekkür ederiz.

Romatizmal Hastalık Tanısı ile Tedavi Gören Çocukların Bakım Vericilerinin Hastalıklara Yönelik Semptom ve Bilgi Düzeyinin Belirlenmesi

Öz

Bu çalışmada romatizmal hastalığa sahip çocukların bakım vericilerin romatizmal hastalıklarda görülen semptomlar ve hastalığa yönelik bilgi düzeylerinin belirlenmesi amaçlandı. Çalışma Türkiye’nin Karadeniz Bölgesi’ndeki bir bölge hastanesinin 20 Ocak – 10 Haziran 2023 tarihleri arasında çocuk romatoloji polikliniğinde romatizmal hastalık tanısı alan 115 çocuğun bakım vericisi ile tanımlayıcı tipte yürütüldü. Veriler “Katılımcı Bilgi Formu” ve “Romatizmal Hastalıklara Yönelik Semptomlar ve Bilgi Düzeyi Formu” kullanılarak toplandı. Verilerin analizinde sayı (n), yüzde (%), ortalama, standart sapma ve bağımsız gruplarda t testi kullanıldı. Çocukların yaş ortalaması 10,58 ± 4,43 yıl olup, tıbbi tanıların %40,9'unu juvenil idiyopatik artrit oluşturmaktadır. Semptomların başlangıcı 36,13 ± 34,59 ayda gerçekleşmiş olup, tedavi süresi 30,04 ± 31,80 aydır (min: 1 ay; maks: 156 ay). Bakım verenlerin %73'ü kadınlardan oluşmakta olup, çoğunluğu annelerden oluşmaktadır ve %59,1'i romatizmal hastalıklarla ilişkili eklem ağrısı yaşamaktadır. Katılımcıların %81,7'si doktorlarından sözel bilgi veya eğitim alırken, %25,2'si sağlanan eğitimin yetersizliği nedeniyle öncelikle çevrimiçi olarak bilgi aramıştır (%95,4). İnternetten bilgi edinen bakım verenler, almayanlara kıyasla hastalık hakkında daha yüksek düzeyde bilgi sahibi olduklarını göstermiştir (p< 0,05). Sağlık profesyonellerinin bakım verenlere yönelik planlı ve sistemli sağlık eğitimleri düzenlemeleri, bakım verenlere internet üzerinden hastalıklar hakkında doğru bilgi vermeyi amaçlayan web sitelerinin oluşturulması konusunda akademisyenler ve meslek örgütlerinin desteğinin sağlanması önerilmektedir.

Anahtar Kelimeler

Bakım verici, Bilgi düzeyi, Çocuk, Romatizmal hastalık, Semptom

Kaynakça

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