{"title":"罕见疾病中的情感关系与生活质量：系统回顾","authors":"Jesús Martínez-Calvo, José-Manuel Guerra, Gema Esteban-Bueno","doi":"10.55414/ap.v42i1.1536","DOIUrl":null,"url":null,"abstract":"Quality of life in patients and caregivers cannot be conceived without including social needs. The aim of this research is to conduct a systematic review showing empirical evidence of how affective relationships influence the quality of life of patients with rare diseases and their caregivers. A search was conducted in the Web of Science, Scopus and PsycInfo databases. A total of 4923 articles were found, which after the screening process were reduced to 12 studies. The effects of affective relationships were found both in the family nucleus and in its components independently (parents, siblings and patients). It is evident that both the family and the extra-familial environment are essential to improve quality of life. It is recommended that future research should study the interactions between the established relationships to offer a better intervention.","PeriodicalId":269734,"journal":{"name":"Apuntes de Psicología","volume":"210 3","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2024-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Affective relationships and quality of life in rare diseases: A systematic review\",\"authors\":\"Jesús Martínez-Calvo, José-Manuel Guerra, Gema Esteban-Bueno\",\"doi\":\"10.55414/ap.v42i1.1536\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Quality of life in patients and caregivers cannot be conceived without including social needs. The aim of this research is to conduct a systematic review showing empirical evidence of how affective relationships influence the quality of life of patients with rare diseases and their caregivers. A search was conducted in the Web of Science, Scopus and PsycInfo databases. A total of 4923 articles were found, which after the screening process were reduced to 12 studies. The effects of affective relationships were found both in the family nucleus and in its components independently (parents, siblings and patients). It is evident that both the family and the extra-familial environment are essential to improve quality of life. It is recommended that future research should study the interactions between the established relationships to offer a better intervention.\",\"PeriodicalId\":269734,\"journal\":{\"name\":\"Apuntes de Psicología\",\"volume\":\"210 3\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-01-08\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Apuntes de Psicología\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.55414/ap.v42i1.1536\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Apuntes de Psicología","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.55414/ap.v42i1.1536","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
摘要
病人和护理人员的生活质量离不开社会需求。本研究旨在进行系统性综述，展示情感关系如何影响罕见病患者及其护理者生活质量的实证证据。研究人员在 Web of Science、Scopus 和 PsycInfo 数据库中进行了搜索。共发现了 4923 篇文章，经过筛选后，只剩下 12 项研究。研究发现，情感关系对家庭核心及其独立组成部分（父母、兄弟姐妹和患者）均有影响。由此可见，家庭和家庭外环境对提高生活质量都至关重要。建议今后的研究应研究既定关系之间的相互作用，以提供更好的干预措施。
Affective relationships and quality of life in rare diseases: A systematic review
Quality of life in patients and caregivers cannot be conceived without including social needs. The aim of this research is to conduct a systematic review showing empirical evidence of how affective relationships influence the quality of life of patients with rare diseases and their caregivers. A search was conducted in the Web of Science, Scopus and PsycInfo databases. A total of 4923 articles were found, which after the screening process were reduced to 12 studies. The effects of affective relationships were found both in the family nucleus and in its components independently (parents, siblings and patients). It is evident that both the family and the extra-familial environment are essential to improve quality of life. It is recommended that future research should study the interactions between the established relationships to offer a better intervention.
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