先天性巨细胞病毒对照顾者和家庭的社会心理影响:亲身经历与文献综述。

IF 4 Q1 GENETICS & HEREDITY International Journal of Neonatal Screening Pub Date : 2023-05-26 DOI:10.3390/ijns9020030
Michelle P Zappas, Amanda Devereaux, Megan H Pesch
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引用次数: 0

摘要

照顾先天性巨细胞病毒(cCMV)患儿可能会让家庭付出高昂的代价,这不仅体现在自付费用方面,还体现在照顾者的时间、人际关系、职业发展轨迹和心理健康方面。这些额外负担有时被称为 "溢出效应"。作为儿童库玛氏症病毒感染者的父母,我们,本文的作者,讨论了库玛氏症病毒对我们家庭的影响。虽然已有多项研究报告了 cCMV 的流行病学、预防、筛查、诊断和管理,但有关 cCMV 对家庭单位可能造成的影响的研究却少之又少。在这篇叙事性综述中,我们将讨论养育一名库玛病毒感染儿童可能对家庭和照顾者生活的各个领域产生的影响。无论儿童受到 cCMV 后遗症的影响是轻微还是严重,他们和他们的家庭都应该提高对该病毒的认识,并制定政府政策来帮助终结 cCMV。由于现有的针对 cCMV 的文献有限,我们对其他儿童残疾进行了相关研究,发现受 cCMV 影响的家庭所经历的相互性。
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The Psychosocial Impact of Congenital Cytomegalovirus on Caregivers and Families: Lived Experiences and Review of the Literature.

Caring for a child with congenital cytomegalovirus (cCMV) can be costly for families, not only in terms of out-of-pocket expenses, but also in terms of caregiver time, relationships, career trajectories, and mental health. These additional burdens are sometimes referred to as "spillover effects". As parents of children with cCMV, we, the authors of this article, discuss the impact that cCMV has had on our families. While multiple studies have reported on the epidemiology, prevention, screening, diagnosis, and management of cCMV, there has been minimal research regarding the possible impact on the family unit. In this narrative review, we discuss the various areas of the lives of families and caregivers that may be impacted by raising a child with cCMV. Whether children are minimally or severely affected by the sequelae of cCMV, they and their families merit the progression of awareness of the virus and governmental policies to help end cCMV. As the existing cCMV-specific literature is limited, we correlate studies of other childhood disabilities and find the mutuality experienced by families affected by cCMV.

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来源期刊
International Journal of Neonatal Screening
International Journal of Neonatal Screening Medicine-Pediatrics, Perinatology and Child Health
CiteScore
6.70
自引率
20.00%
发文量
56
审稿时长
11 weeks
期刊最新文献
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