Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia.
Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia.
Am J Kidney Dis. 2015 Mar;65(3):384-93. doi: 10.1053/j.ajkd.2014.07.019. Epub 2014 Sep 20.
The economic consequences of chronic kidney disease (CKD) are severe for adult patients and their households, but the out-of-pocket expenses and economic burden of CKD and how this affects the caregivers of children with kidney disease are unclear. This study aims to describe parental perspectives on the financial impact of caring for a child with CKD.
Face-to-face semistructured interviews.
SETTING & PARTICIPANTS: Parents of children with CKD from 3 pediatric nephrology centers in Australia.
Transcripts were analyzed thematically.
27 parents of 26 children participated. We identified 5 themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child's health, burden of travel-related costs, imposition of debt, and domestic upheaval), and struggle in seeking support ("falling through the cracks" and unmet information needs).
Few participants were fathers (n=5), and results may not be transferable to non-English-speaking caregivers because these participants were excluded.
Parents focused their resources and attention on meeting the complex needs of their child. Inability to sustain employment due to focus on their child's care and both medical and nonmedical expenses were major contributors to the financial impact, with financial stress compounded by difficulties accessing government support. As a result, parents experienced profound financial and social instability and physical and psychological fatigue and exercised extreme financial vigilance. Increased access to respite and domestic support and financial and psychosocial interventions are suggested to minimize the financial impact of caring for a child with CKD, which in turn may lead to better care, quality of life, and health outcomes for children with CKD and their families.
慢性肾脏病（CKD）给成年患者及其家庭带来了严重的经济后果，但 CKD 的自付费用和经济负担，以及这对儿童肾脏病患者照顾者的影响尚不清楚。本研究旨在描述父母对照顾患有 CKD 的儿童的经济影响的看法。
面对面半结构化访谈。
来自澳大利亚 3 个儿科肾病中心的 26 名儿童的 27 位父母。
主题分析。
27 位父母参与了 26 位儿童的研究。我们确定了 5 个主题：自由和控制的丧失（优先考虑护理，限制职业机会，并欣赏社会经济优势）、独自承担责任的负担（无法依赖他人，缺乏休息，家庭角色分离，自力更生）、适应生存（谨慎预算，重新定义正常和期望，重新调整资源以满足基本需求，协商工作灵活性）、情况不稳定（工作能力下降，儿童健康状况不可预测，旅行相关费用负担，债务负担，家庭动荡）和寻求支持的困难（“漏洞百出”和未满足的信息需求）。
很少有父亲参加（n=5），由于这些参与者被排除在外，结果可能不适用于非英语国家的照顾者。
父母将他们的资源和注意力集中在满足孩子复杂的需求上。由于专注于孩子的护理以及医疗和非医疗费用，无法维持就业是造成经济影响的主要原因，而难以获得政府支持则加剧了经济压力。因此，父母经历了深刻的经济和社会不稳定、身体和心理疲劳，并采取了极端的财务谨慎措施。建议增加休息和家庭支持，以及财务和心理社会干预，以尽量减少照顾患有 CKD 的儿童的经济影响，这反过来又可能改善儿童 CKD 及其家庭的护理、生活质量和健康结果。
