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多次输血的地中海贫血患者兄弟姐妹的心理社会问题

Psychosocial Problems in the Siblings of Multitransfused Thalassemia Patients.

作者信息

Lodhi Pratibha, Sharma Shweta, Singh Prachi, Agrawal Amit

机构信息

Department of Pediatrics, Bundelkhand Medical College, Sagar, IND.

Pediatrics, Gandhi Medical College, Bhopal, IND.

出版信息

Cureus. 2025 Jun 20;17(6):e86443. doi: 10.7759/cureus.86443. eCollection 2025 Jun.

Abstract

BACKGROUND

Thalassemia significantly affects the psychosocial health of patients, their families, and siblings. Recognizing and addressing psychosocial challenges within the family system and among siblings is crucial to enhance their well-being and the overall family functioning.

OBJECTIVES

To assess the psychosocial stress in siblings of multiple-transfused thalassemia patients, utilizing two distinct scales specifically designed to evaluate psychological distress in children.

METHODOLOGY

In this cross-sectional observational study, siblings aged 2-18 years accompanying beta-thalassemia patients attending the Pediatrics Department of Gandhi Medical College, Bhopal, for blood transfusions or outpatient department visits were enrolled. Psychosocial stress was assessed using the Pediatric Symptom Checklist-17 (PSC-17) for the participants aged 4-17 years and the Perceived Stress Scale - Children (PSS-C) for the participants aged 5-18 years. Regression, latent class, and mediation analyses explored sociodemographic associations, symptom profiles, and PSS-C as a mediator of PSC-17 outcomes.

RESULTS

Of 95 participants, 71 completed the PSS-C, with 38 (53.5%) reporting moderate stress and 33 (46.5%) low stress. On PSC-17 screening, 30 (31.6%) screened positive for internalising symptoms, and 9 (9.5%) each for attention and externalizing problems. Older age was associated with higher odds of internalizing concerns, and male gender with lower odds of attention deficit hyperactivity disorder (ADHD) and externalizing symptoms. On latent class analysis, a 2-class model demonstrated the best fit based on the lowest Bayesian information criterion (249.51). Class 1 represented a high-symptom group, characterized by a high probability of screening positive across all three domains, whereas Class 2 represented a low-symptom group showing low probabilities of concern. Mediation analyses revealed no significant indirect effects of perceived stress (PSS-C score) on the relationship between demographic characteristics and psychosocial symptoms across all PSC-17 domains.

CONCLUSION

We found that siblings of thalassemia patients experience mild to moderate levels of psychological stress. Anxiety and depression emerged as the most prevalent disorders, with a higher incidence observed in females than in males. It advocates for a more inclusive, holistic approach that considers both the patient and the psychosocial well-being of siblings within the broader family context.

摘要

背景

地中海贫血严重影响患者及其家人和兄弟姐妹的心理社会健康。认识并应对家庭系统内部以及兄弟姐妹之间的心理社会挑战对于提升他们的幸福感和家庭整体功能至关重要。

目的

利用专门设计用于评估儿童心理困扰的两种不同量表,评估多次输血的地中海贫血患者的兄弟姐妹的心理社会压力。

方法

在这项横断面观察性研究中,纳入了陪同β地中海贫血患者前往博帕尔甘地医学院儿科进行输血或门诊就诊的2至18岁的兄弟姐妹。对于4至17岁的参与者,使用儿童症状清单-17(PSC-17)评估心理社会压力;对于5至18岁的参与者,使用儿童感知压力量表(PSS-C)进行评估。回归分析、潜在类别分析和中介分析探讨了社会人口学关联、症状概况以及PSS-C作为PSC-17结果的中介作用。

结果

在95名参与者中,71人完成了PSS-C,其中38人(53.5%)报告有中度压力,33人(46.5%)报告有低度压力。在PSC-17筛查中,30人(31.6%)内化症状筛查呈阳性,9人(9.5%)注意力和外化问题筛查呈阳性。年龄较大与内化问题的几率较高相关,男性患注意力缺陷多动障碍(ADHD)和外化症状的几率较低。在潜在类别分析中,基于最低贝叶斯信息准则(249.51),一个2类别模型显示拟合度最佳。类别1代表高症状组,其特征是在所有三个领域筛查呈阳性的概率较高,而类别2代表低症状组,显示出担忧概率较低。中介分析显示,在所有PSC-17领域中,感知压力(PSS-C分数)对人口统计学特征与心理社会症状之间的关系没有显著的间接影响。

结论

我们发现地中海贫血患者的兄弟姐妹经历轻度至中度的心理压力。焦虑和抑郁是最常见的疾病,女性的发病率高于男性。这提倡采用更具包容性的整体方法,在更广泛的家庭背景下考虑患者以及兄弟姐妹的心理社会幸福感。

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本文引用的文献

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Current Status of β-Thalassemic Burden in India.印度β-地中海贫血负担的现状。
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Adaptive Functioning and Psychosocial Problems in Children with Beta Thalassemia Major.重型β地中海贫血患儿的适应功能与心理社会问题
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