Pedro Henrique Moreira Lima, Lorena Araújo Silva Jorge, Francisco César Monteiro Chaves Filho, Renata Torreão Viana de Melo Costa, André Jalles Monteiro, Thyciana Rodrigues Ribeiro, Anya Pimentel Gomes Fernandes Vieira-Meyer, Sara Maria Silva, André Luiz Santos Pessoa, Erlane Marques Ribeiro, Cristiane Sá Roriz Fonteles
{"title":"先天性寨卡综合征儿童主要照顾者对生活质量的感知:一项横断面研究","authors":"Pedro Henrique Moreira Lima, Lorena Araújo Silva Jorge, Francisco César Monteiro Chaves Filho, Renata Torreão Viana de Melo Costa, André Jalles Monteiro, Thyciana Rodrigues Ribeiro, Anya Pimentel Gomes Fernandes Vieira-Meyer, Sara Maria Silva, André Luiz Santos Pessoa, Erlane Marques Ribeiro, Cristiane Sá Roriz Fonteles","doi":"10.1007/s10995-025-04057-y","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>The study aimed to evaluate the quality of life (QoL) of caregivers of children diagnosed with CZS and to assess the association of findings with socioeconomic and CZS-associated variables.</p><p><strong>Methods: </strong>This was a cross-sectional, quantitative study, carried out over three days of multidisciplinary care for patients with CZS. Sixty-four participants underwent a quality of life assessment using the World Health Organization Quality of Life questionnaire (WHOQOL-BREF) in Portuguese.</p><p><strong>Results: </strong>Both groups of caregivers attributed regular scores for Global QoL, and all WHOQOL-BREF domains. Among caregivers of children with CZS, QoL correlated with three of the four WHOQOL-BREF domains (psychological health: rho = 0.49, p < 0.001; social relationships: rho = 0.28, p < 0.023; and environment: rho = 0.11, p < 0.006), while general health perception correlated with three other domains (physical health: rho = 0.49, p < 0.001; psychological health: rho = 0.31, p < 0.012; and social relationships: rho = 0.30, p < 0.016). The environment domain was associated with the level of education in this population (p < 0.001). Macular scarring and focal pigmentary retinal mottling were significantly associated with the physical environment (p = 0.039), negative feelings (p = 0.035), support and social aid (p = 0.020).</p><p><strong>Conclusion: </strong>The present study demonstrates that the WHOQOL-BREF is an effective method to evaluate the general perception of QoL among caregivers of children with CZS. Our results also suggest that caregivers of children with CZS do not experience a reduced quality of life compared to caregivers of typically developing children.</p>","PeriodicalId":48367,"journal":{"name":"Maternal and Child Health Journal","volume":" ","pages":"363-375"},"PeriodicalIF":1.8000,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Perception of Quality of Life by Primary Caregivers of Children with Congenital Zika Syndrome: a Cross-Sectional Study.\",\"authors\":\"Pedro Henrique Moreira Lima, Lorena Araújo Silva Jorge, Francisco César Monteiro Chaves Filho, Renata Torreão Viana de Melo Costa, André Jalles Monteiro, Thyciana Rodrigues Ribeiro, Anya Pimentel Gomes Fernandes Vieira-Meyer, Sara Maria Silva, André Luiz Santos Pessoa, Erlane Marques Ribeiro, Cristiane Sá Roriz Fonteles\",\"doi\":\"10.1007/s10995-025-04057-y\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>The study aimed to evaluate the quality of life (QoL) of caregivers of children diagnosed with CZS and to assess the association of findings with socioeconomic and CZS-associated variables.</p><p><strong>Methods: </strong>This was a cross-sectional, quantitative study, carried out over three days of multidisciplinary care for patients with CZS. Sixty-four participants underwent a quality of life assessment using the World Health Organization Quality of Life questionnaire (WHOQOL-BREF) in Portuguese.</p><p><strong>Results: </strong>Both groups of caregivers attributed regular scores for Global QoL, and all WHOQOL-BREF domains. Among caregivers of children with CZS, QoL correlated with three of the four WHOQOL-BREF domains (psychological health: rho = 0.49, p < 0.001; social relationships: rho = 0.28, p < 0.023; and environment: rho = 0.11, p < 0.006), while general health perception correlated with three other domains (physical health: rho = 0.49, p < 0.001; psychological health: rho = 0.31, p < 0.012; and social relationships: rho = 0.30, p < 0.016). The environment domain was associated with the level of education in this population (p < 0.001). Macular scarring and focal pigmentary retinal mottling were significantly associated with the physical environment (p = 0.039), negative feelings (p = 0.035), support and social aid (p = 0.020).</p><p><strong>Conclusion: </strong>The present study demonstrates that the WHOQOL-BREF is an effective method to evaluate the general perception of QoL among caregivers of children with CZS. Our results also suggest that caregivers of children with CZS do not experience a reduced quality of life compared to caregivers of typically developing children.</p>\",\"PeriodicalId\":48367,\"journal\":{\"name\":\"Maternal and Child Health Journal\",\"volume\":\" \",\"pages\":\"363-375\"},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2025-03-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Maternal and Child Health Journal\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s10995-025-04057-y\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/1/22 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Maternal and Child Health Journal","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s10995-025-04057-y","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/22 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH","Score":null,"Total":0}
Perception of Quality of Life by Primary Caregivers of Children with Congenital Zika Syndrome: a Cross-Sectional Study.
Objective: The study aimed to evaluate the quality of life (QoL) of caregivers of children diagnosed with CZS and to assess the association of findings with socioeconomic and CZS-associated variables.
Methods: This was a cross-sectional, quantitative study, carried out over three days of multidisciplinary care for patients with CZS. Sixty-four participants underwent a quality of life assessment using the World Health Organization Quality of Life questionnaire (WHOQOL-BREF) in Portuguese.
Results: Both groups of caregivers attributed regular scores for Global QoL, and all WHOQOL-BREF domains. Among caregivers of children with CZS, QoL correlated with three of the four WHOQOL-BREF domains (psychological health: rho = 0.49, p < 0.001; social relationships: rho = 0.28, p < 0.023; and environment: rho = 0.11, p < 0.006), while general health perception correlated with three other domains (physical health: rho = 0.49, p < 0.001; psychological health: rho = 0.31, p < 0.012; and social relationships: rho = 0.30, p < 0.016). The environment domain was associated with the level of education in this population (p < 0.001). Macular scarring and focal pigmentary retinal mottling were significantly associated with the physical environment (p = 0.039), negative feelings (p = 0.035), support and social aid (p = 0.020).
Conclusion: The present study demonstrates that the WHOQOL-BREF is an effective method to evaluate the general perception of QoL among caregivers of children with CZS. Our results also suggest that caregivers of children with CZS do not experience a reduced quality of life compared to caregivers of typically developing children.
期刊介绍:
Maternal and Child Health Journal is the first exclusive forum to advance the scientific and professional knowledge base of the maternal and child health (MCH) field. This bimonthly provides peer-reviewed papers addressing the following areas of MCH practice, policy, and research: MCH epidemiology, demography, and health status assessment
Innovative MCH service initiatives
Implementation of MCH programs
MCH policy analysis and advocacy
MCH professional development.
Exploring the full spectrum of the MCH field, Maternal and Child Health Journal is an important tool for practitioners as well as academics in public health, obstetrics, gynecology, prenatal medicine, pediatrics, and neonatology.
Sponsors include the Association of Maternal and Child Health Programs (AMCHP), the Association of Teachers of Maternal and Child Health (ATMCH), and CityMatCH.