The Caregiving Burden and Perception of Quality of Life of Caregivers of Technology Dependent Children with Chronic Disease and Disabilities: A View from One Center

Autor: Nilgün Erkek, Melahat Akdeniz, Ali Kılınç
Jazyk: English<br />Turkish
Rok vydání: 2023
Předmět:
Zdroj: Journal of Pediatric Emergency and Intensive Care Medicine, Vol 10, Iss 3, Pp 180-185 (2023)
Druh dokumentu: article
ISSN: 2146-2399
2148-7332
DOI: 10.4274/cayd.galenos.2023.55707
Popis: Introduction:Children with chronic diseases and disabilities those need support of medical technologies (TD) for living, have led to a load of complex nursing care being carried out usually by parents at their home. This study was carried out to evaluate the caregiving burden and perception of the quality of life of the caregivers of technology dependent children followed in our center.Methods:A retrospective survey-based observational study carried out with primary caregivers of the TD children with chronic disease. Zarit burden scale (ZBS) and Turkish version of the SF-36 quality of life scale were used.Results:Most of the primary caregivers were mothers (61%) or fathers of the TD children. 62% of the participants had been caring for these children for more than 3 years, and 75% of them cannot benefit from institutional home nursing services. More than half of the caregivers reported not having enough income to make ends meet, and about half of them stated to have to quit own jobs. It was seen that 74% of caregivers had at least one chronic disease, 32% of them had psycological problems under treatment. The mean score of caregivers’ burden in total measured by ZBS was 52.8±14.3 points that indicating moderate load. Caregivers’ burden showed a high strenght of positive correlation with ZF1 and ZF2 sub dimensions. Caregivers’ increasing age, female gender, low income level, presence of chronic health problems of caregivers showed a significance in ZF1sub dimension. Quality of life scores of caregivers were found below than averages of Turkey in all 8 sub-categories (p
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