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

• Published in: Çocuk acil ve yoğun bakım Vol. 10; no. 3; pp. 180 - 185
• Main Authors: Erkek, Nilgün, Akdeniz, Melahat, Kılınç, Ali
• Format: Journal Article
• Language: English
• Published: Galenos Yayinevi 01.12.2023
• Subjects: biomedical technology; caregiver burden; children with disabilities; home nursing; life support care; palliative care; quality of life; sf-36 quality of life scale; zarith burden scale
• ISSN: 2146-2399; 2148-7332
• DOI: 10.4274/cayd.galenos.2023.55707

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<0.05). As the mean caregiver burden increased, quality of life scores of caregivers in all 8 categories decreased.Conclusion:This may contribute to medical and institutional professionals to develop targeted strategies to support these childrens’ caregivers.