Alshadfan Lina, Deameh Mohammad, Alhyary Aya, Da'meh Mohammad, El-Areidi Khaled, Sharqi Mahmod, Alkayed Ahmad, Da'meh Khaled, Alhaj Ali Osama, Alkhdour Ghada, Abu-Shai'rah Rahaf, Akash Basel, Alfaouri Mohammad, Abualhaj Saleh
Department of Pediatric, Al-Balqa Applied University, As-Salt, Jordan
Hashemite Kingdom of Jordan Ministry of Health, Amman, Amman Governorate, Jordan.
BMJ Paediatr Open. 2025 Aug 3;9(1):e003610. doi: 10.1136/bmjpo-2025-003610.
Caregivers of children with chronic illnesses often experience varying levels of burden, influenced by multiple psychosocial and environmental factors. Understanding the specific sources and determinants of caregiver burden is crucial for developing supportive interventions, particularly in regions where research remains limited.
A cross-sectional study was conducted among 352 caregivers to assess the extent and nature of caregiving burden. Burden levels were measured using a validated Arabic version of the Zarit Burden Interview (ZBI-A) questionnaire, and associations with sociodemographic factors were examined.
The study included 352 caregivers of children with chronic illnesses, with a mean child age of 9.5 years (SD=4.4) and a majority being boys (64.5%). The mean age of the caregivers was 40.3 years (SD=9.2, range: 20-70 years), with most being mothers (83.8%). According to the ZBI-A Score, 38.6% experienced no-to-mild burden, 40.6% reported mild-to-moderate burden and 20.8% faced high burden. The most prominent burden sources were feelings of inadequacy, stress balancing childcare with other responsibilities and insufficient time for self-care (mean: 2.83, 2.61 and 2.47, respectively). Moderate burdens included fatigue, lack of privacy and health deterioration (mean: 2.07, 2.07 and 2.00, respectively), while the lowest level was observed for anger (mean: 1.74). Lower family income and non-attendance of children in school were significantly associated with higher caregiver burden (p=0.04 and 0.02, respectively).
Caregiver burden is a significant issue among parents of chronically ill children, shaped by emotional, social and financial stressors. Strengthening school-based support services and addressing financial hardships may substantially reduce caregiver burden and improve family well-being.
慢性病患儿的照料者常常承受不同程度的负担，这受到多种心理社会和环境因素的影响。了解照料者负担的具体来源和决定因素对于制定支持性干预措施至关重要，尤其是在研究仍然有限的地区。
对352名照料者进行了一项横断面研究，以评估照料负担的程度和性质。使用经过验证的阿拉伯语版《扎里特负担访谈问卷》（ZBI-A）来测量负担水平，并检验其与社会人口学因素的关联。
该研究纳入了352名慢性病患儿的照料者，患儿平均年龄为9.5岁（标准差=4.4），大多数为男孩（64.5%）。照料者的平均年龄为40.3岁（标准差=9.2，范围：20至70岁），大多数是母亲（83.8%）。根据ZBI-A评分，38.6%的人承受无至轻度负担，40.6%的人报告有轻度至中度负担，20.8%的人面临高负担。最突出的负担来源是感到能力不足、在平衡育儿与其他责任时的压力以及自我照顾时间不足（平均分分别为2.83、2.61和2.47）。中度负担包括疲劳、缺乏隐私和健康恶化（平均分分别为2.07、2.07和2.00），而愤怒程度最低（平均分：1.74）。家庭收入较低和孩子未上学与照料者负担较高显著相关（p分别为0.04和0.02）。
照料者负担是慢性病患儿家长面临的一个重要问题，受到情感、社会和经济压力源的影响。加强基于学校的支持服务并解决经济困难可能会大幅减轻照料者负担并改善家庭福祉。
