Abstract：
BACKGROUND: Anorectal malformation (ARM) or Hirschsprung\'s disease (HD) in children impact on parents\' burden of care and quality of life (QoL). The aim of this study was to investigate the relationship between caregiver burden and QoL in parents of children with ARM or HD.
METHODS: This cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR).
RESULTS: The mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (β1 = 5.912), family income (β1 = -6.007), stoma care (β1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = -0.417, p < .01), psychological domain (r = -0.421, p < .01), social relations domain (r = -0.398, p < .01), and environmental domain (r = -0.495, p < .01) scores of the WHOQOL-BREF-TR.
CONCLUSIONS: The mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life.
CONCLUSIONS: Heightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.
METHODS: This cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR).
RESULTS: The mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (β1 = 5.912), family income (β1 = -6.007), stoma care (β1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = -0.417, p < .01), psychological domain (r = -0.421, p < .01), social relations domain (r = -0.398, p < .01), and environmental domain (r = -0.495, p < .01) scores of the WHOQOL-BREF-TR.
CONCLUSIONS: The mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life.
CONCLUSIONS: Heightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.
摘要：
背景：儿童的肛门直肠畸形（ARM）或先天性巨结肠病（HD）会影响父母的护理负担和生活质量（QoL）。这项研究的目的是调查ARM或HD儿童父母的照顾者负担与QoL之间的关系。
方法：这项横断面研究是对51名父母进行的，他们完成了Zarit负担量表（ZBI）和世界卫生组织生活质量量表-简表土耳其语版本（WHOQOL-BREF-TR）。
结果：平均（±SD）ZBI评分为33.6（±12.7），47.1%的父母(n=24)认为他们的照顾者负担较轻，31.4%(n=16)为中等，3.9%(n=2)为严重。根据多元线性回归，相关异常(β1=5.912)，家庭收入(β1=-6.007)，造口护理（β1=8.287），和诊断被确定为照顾者负担的重要决定因素。一个否定的,中度,ZBI评分与物理领域之间存在显著关系(r=-0.417，p<0.01)，心理域(r=-0.421，p<0.01)，社会关系域(r=-0.398，p<0.01)，和WHOQOL-BREF-TR的环境领域(r=-0.495，p<.01)得分。
结论：母亲们认为她们的照顾者负担较轻。然而,相当数量的父母承受着中等至沉重的照顾者负担。父母照顾者负担的增加降低了他们的生活质量。
结论：提高ARM和HD患儿父母对照顾者负担的潜在可能性及其与生活质量的关系的认识可能有助于改善。
方法：这项横断面研究是对51名父母进行的，他们完成了Zarit负担量表（ZBI）和世界卫生组织生活质量量表-简表土耳其语版本（WHOQOL-BREF-TR）。
结果：平均（±SD）ZBI评分为33.6（±12.7），47.1%的父母(n=24)认为他们的照顾者负担较轻，31.4%(n=16)为中等，3.9%(n=2)为严重。根据多元线性回归，相关异常(β1=5.912)，家庭收入(β1=-6.007)，造口护理（β1=8.287），和诊断被确定为照顾者负担的重要决定因素。一个否定的,中度,ZBI评分与物理领域之间存在显著关系(r=-0.417，p<0.01)，心理域(r=-0.421，p<0.01)，社会关系域(r=-0.398，p<0.01)，和WHOQOL-BREF-TR的环境领域(r=-0.495，p<.01)得分。
结论：母亲们认为她们的照顾者负担较轻。然而,相当数量的父母承受着中等至沉重的照顾者负担。父母照顾者负担的增加降低了他们的生活质量。
结论：提高ARM和HD患儿父母对照顾者负担的潜在可能性及其与生活质量的关系的认识可能有助于改善。
