Turkiye Klinikleri Journal of Health Sciences

.: ORIGINAL RESEARCH
Examination of the Relationship Between the Social Participation of Children with Autism and the Quality of Life and Caregiver Burden of the Parents: Cross-Sectional Study
Otizmli Çocukların Sosyal Katılımı ile Ebeveynlerin Yaşam Kalitesi ve Bakım Veren Yükü Arasındaki İlişkinin İncelenmesi: Kesitsel Çalışma
Kübra ERSOYa , Berkan TORPİLa , Barkın KÖSEa , Serkan PEKÇETİNa
aDepartment of Occupational Therapy, University of Health Sciences Gülhane Faculty of Health Sciences, Ankara, Türkiye
Turkiye Klinikleri J Health Sci. 2024;9(1):84-91
doi: 10.5336/healthsci.2023-98034
Article Language: EN
Full Text
ABSTRACT
 Objective: Children with autism (CwA) often face challenges in social participation, which can impact their ability to form relationships, engage in daily living activities, and develop important life skills. The impact of these challenges is not limited to the CwA alone but also extends to their parents or caregivers who assume the primary responsibility for their care. Our study aims to examine the relationship between the social participation of CwA and the quality of life (QoL) of parents and caregiver burden. Material and Methods: 32 caregivers with children aged 5-12 years with autism spectrum disorder were included in the study. Children's social participation was evaluated with the Child and Adolescent Participation Scale (CASP). Parents' QoL was assessed with the WHOQOL-BREF and caregiver burden with the Zarit Caregiver Burden Scale (ZCBS). Results: A moderate negative significant correlation was found between CASP and ZCBS (r=-0.593**, p<0.01), a low moderate positive significant correlation between CASP and WHOQOL-BREF (r=0.374*, p<0.05). Conclusion: The findings of our study highlight the importance of promoting social participation in CwA, not only for the benefit of the child but also for the well-being of the parents and the family as a whole. In this context, occupational therapy interventions to be applied to increase the social participation of CwA are very important in reducing the burden of care and increasing the QoL of parents.

Keywords: Autism spectrum disorder; social participation; quality of life; caregiver burden
ÖZET
 Amaç: Otizmli çocuklar, sosyal katılımda genellikle ilişki kurma, günlük yaşam aktivitelerine katılma ve önemli yaşam becerileri geliştirme becerilerini etkileyebilecek zorluklarla karşılaşırlar. Bu zorlukların etkisi yalnızca otizmli çocuklarla sınırlı kalmayıp, onların bakımı için birincil sorumluluğu üstlenen ebeveynleri veya bakım verenlerini de etkilemektedir. Çalışmamızın amacı, otizmli çocukların sosyal katılımları ile ebeveynlerin yaşam kaliteleri ve bakım veren yükü arasındaki ilişkiyi incelemektir. Gereç ve Yöntemler: Çalışmaya otizm spektrum bozukluğu tanılı 5-12 yaş arası çocuğa sahip 32 bakım veren dâhil edildi. Çocukların sosyal katılımı Çocuk ve Ergen Katılım Ölçeği [Child and Adolescent Participation Scale (CASP)] ile değerlendirildi. Ebeveynlerin yaşam kalitesi WHOQOL-BREF ile bakım veren yükü Zarit Bakım Veren Yükü Ölçeği ile değerlendirildi. Bulgular: CASP ile Zarit Bakım Veren Yükü Ölçeği arasında orta derecede negatif anlamlı korelasyon (r=-0,593**, p<0,01), CASP ile WHOQOL-BREF arasında düşük orta pozitif anlamlı korelasyon (r=0,374*, p<0,05) bulundu. Sonuç: Çalışmamızın bulguları, yalnızca çocuğun yararı için değil, aynı zamanda ebeveynlerin ve bir bütün olarak ailenin iyiliği için de otizmli çocukların sosyal katılımını teşvik etmenin önemini vurgulamaktadır. Bu bağlamda otizmli çocukların sosyal katılımlarının artırılması amacıyla uygulanacak ergoterapi müdahaleleri ebeveynlerin bakım yükünün azaltıl- masında ve yaşam kalitesini artırmada oldukça önem arz etmektedir.

Anahtar Kelimeler: Otizm spektrum bozukluğu; sosyal katılım; yaşam kalitesi; bakım veren yükü
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