目的 调查儿童青少年重型β-地中海贫血(β-TM)患儿心理行为问题及影响因素,为制定针对性的干预措施,促进β-TM患儿心理行为健康提供参考依据。方法 采用便利抽样法,选取2022年8月—2023年2月桂滇黔三省交界区某三甲综合医院儿内科146例儿童青少年β-TM患儿作为研究对象。采用一般资料调查表、Conners父母用症状问卷、简易应对方式问卷、父母教养方式量表进行调查,采用多因素Logistic回归方法分析β-TM患儿心理行为问题的影响因素。结果 本次调查的146例β-TM患儿中,心理行为问题总得分为17.08±13.62,其中57例(39.0%)患儿存在心理行为问题。多因素Logistic回归分析显示,年龄(13～18岁)、父母教育程度高中及以上(高中或中专、大专及以上)、父母情感温暖教养方式是β-TM患儿存在心理问题的保护因素(OR=0.778,0.730,0.802,0.703,P<0.05);疾病造成经济负担、流动家庭、父母消极应对方式、过分保护教养方式是其危险因素(P<0.05)。性别、是否独生子女、是否规律除铁与患儿心理行为问题的发生无显著相关性(P＞0.05)。结论 β-TM患儿心理行为问题较为突出,与患儿年龄、家庭结构、父母教育程度等密切相关,应采取针对性的干预措施,改善患儿心理行为问题。
Abstract
Objective To investigate psychological and behavioral problems in children and adolescents with severe beta-thalassemia major (β-TM), and to analyze their influencing factors, so as to provide basis for targeted interventions to promote the psychological and behavioral health of β-TM patients. Methods A convenience sampling method was used to select 146 pediatric and adolescent patients with β-TM from the pediatrics department a tertiary general hospital in the border region of Guangxi, Yunnan, and Guizhou provinces between August 2022 and February 2023. Data were collected using a demographic questionnaire, the Conners′ Parent Symptom Questionnaire, the Simplified Coping Style Questionnaire, and the Parental Feeding Style Scale. Multivariate Logistic regression analysis was used to identify factors influencing the psychological and behavioral problems of these patients. Results Among the 146 β-TM patients, the total score of psychological and behavioral problems was 17.08 ± 13.62, with a detection rate of 39.0%. Multivariate Logistic regression analysis showed that protective factors of psychological and behavioral problems in β-TM children included age (13 -18 years old), parental education level of high school or above(senior high school/vocational school,college andabove), and emotionally warm parenting style(OR=0.778,0.730,0.802,0.703), while the risk factors included heavy economic burden due to the disease, migrant family status, negative coping styles of parents, and overprotective parenting style (P＜0.05). Gender, being an only child, and regular iron chelation therapy were not significantly associated with the occurrence of psychological and behavioral problems (P>0.05). Conclusion Psychological and behavioral problems are prominent among β-TM patients and are closely related to patient age, family structure, and parental education levels. Targeted interventions should be implemented to improve the psychological and behavioral health of these patients.
关键词
重型β-地中海贫血 /
儿童青少年 /
心理行为问题
Key words
β-thalassemia major /
children and adolescents /
psychological and behavioral problems
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参考文献
[1] Wang WD, Hu F, Zhou DH, et al. Thalassaemia in China[J]. Blood Rev, 2023,60:101074.
[2] Ferraresi M, Panzieri DL, Leoni S, et al. Therapeutic perspective for children and young adults living with thalassemia and sickle cell disease[J]. Eur J Pediatr, 2023,182(6):2509-2519.
[3] Meilsmeidth G, Trigueiro MJ, Simões-Silva V, et al. Assessing the efficacy of the ′bicho de 7 cabeças′ b-learning school-based program in enhancing mental health literacy and reducing stigma[J].BMC Psychol, 2024,12(1):93.
[4] 静进,欧萍,徐海青,等.儿童心理行为专科建设专家共识[J].中国儿童保健杂志,2023,31(9):929-934.
Jing J,Ou P, Xu HQ, et al. Expert consensus on the construction of pediatric psychological and behavioral specialty[J]. Chin J Child Health Care, 2023,31(9):929-934. (in Chinese)
[5] Rambod M, Hamidizadeh S, Bazrafshan MR, et al. Risk and protective factors for resilience among adolescents and young adults with beta-thalassemia major[J]. BMC Psychol, 2023,11(1):231.
[6] Benoit V, Gabola P. Effects of positive psychology interventions on the well-being of young children:A systematic literature review[J]. Int J Environ Res Public Health, 2021,18(22):12065.
[7] Wang M, Huang M, Hong Y. Psychological intervention in children with transfusion-dependent beta-thalassaemia[J]. Vox Sang, 2022,117(3):386-392.
[8] 许明慧,韩梦蝶,赵雪,等.注意力缺陷多动障碍评估工具的研究进展[J].护理研究,2023,37(2):289-292.
Xu MH, Han MD, Zhao X, et al. Research progress of assessment tools for attention deficit hyperactivity disorder[J]. Chin Nurs Res, 2023,37(2):289-292. (in Chinese)
[9] 解亚宁.简易应对方式量表信度和效度的初步研究[J].中国临床心理学杂志,1998,6(2): 53-54.
Jie YN. A preliminary study of the reliability and validity of the Brief Coping Styles Scale[J]. Chin J Clin Psychol, 1998,6(2): 53-54. (in Chinese)
[10] Castro J, de Pablo J, Gómez J, et al. Assessing rearing behaviour from the perspectives of the parents: A new form of the embu[J]. Soc Psychiatry Psychiatr Epidemiol. 1997,32(4):230-235.
[11] Bell IH, Marx W, Nguyen K, et al. The effect of psychological treatment on repetitive negative thinking in youth depression and anxiety: A meta-analysis and meta-regression[J]. Psychol Med, 2023,53(1):6-16.
[12] Shafie AA, Chhabra IK, Wong JHY, et al. Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in malaysia[J]. Health Qual Life Outcomes, 2020,18(1):141.
[13] Shafie AA, Wong JHY, Ibrahim HM, et al. Economic burden in the management of transfusion-dependent thalassaemia patients in malaysia from a societal perspective[J]. Orphanet J Rare Dis, 2021,16(1):157.
[14] 韦冬梅,马如青,黄飞燕.来宾市地中海贫血患者的疾病经济负担[J].吉林医学, 2023,44(4):1059-1062.
Wei DM, Ma RQ, Huang FY. Economic burden of disease among thalassemia patients in laibin city[J]. Jilin Med J, 2023,44(4):1059-1062.(in Chinese)
[15] 李梦滔,代梦琴,罗尧竞,等.学龄期注意缺陷多动障碍儿童社交焦虑现状及影响因素[J].中国儿童保健杂志,2024,32(3):344-348.
Li MT, Dai MQ, Luo YJ, et al. Status quo and its influencing factors of social anxiety in school-age children with attention deficit hyperactivity disorder[J].Chin J Child Health Care, 2024,32(3):344-348. (in Chinese)
[16] 李新,韩月皎,王亚菲,等.139名肠造口患儿主要照顾者家庭坚韧性现状及影响因素分析[J].护理学报,2022,29(18):63-68.
Li X, Han YJ, Wang YF, et al. Current status of family resilience of primary caregivers of children with enterostomy and its influencing factors: A 139-case study[J]. J Nurs Chin,2022,29(18):63-68. (in Chinese)
[17] 王英杰,李燕,吴凡.家庭功能与学前儿童行为问题的关系:依恋回避和社交焦虑的多重中介作用[J].心理发展与教育,2021,37(1):76-83.
Wang YJ, Li Y, Wu F. Effects of family function on pre-schoolers′ problem behaviors:The sequential mediating effects of attachment avoidance and social anxiety[J]. Psychol Dev Educ, 2021,37(1):76-83. (in Chinese)
[18] 章景丽,陈瑞美,陈秋,等.家庭因素与学龄前儿童情绪与行为问题的关联研究[J].中华疾病控制杂志,2019,23(2):168-171.
Zhang JL, Chen RM, Chen Q, et al. Impact of home environment on emotional and behavioral problems in preschool children[J]. Chin J Dis Control Prev, 2019,23(2):168-171. (in Chinese)
[19] Benzies KM, Kurilova J, van der Merwe M. Parental attitudinal and behavioral change associated with prevention-focused parenting education: An interpretive description[J]. Health Educ Behav, 2023,50(1):144-152.
[20] 胡紫月,雷金金,阚肖迪,等.187名血液病患儿父母养育心理灵活性现状及影响因素分析[J].护理学报,2023,30(23):62-66.
Hu ZY, Lei JJ, Kan XD, et al. Analysis of the current situation of parenting psychological flexibility of parents of 187 children with hematologic disorders and the factors affecting it[J]. J Nurs Chin, 2023,30(23):62-66. (in Chinese)
基金
广西自然科学基金项目(2020GXNSFAA297194,2020GXNSFAA297094);广西自筹经费科研项目(Z20210277);百色市科学研究与技术开发计划项目基金(百科20222003)
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