Ana Paula Bastos Tavares, Lucas Belém Pessôa de Melo Guerra Seixas, Caren Lopes Wanderlei Jayme, Gilda Porta, Renata Belém Pessôa de Melo Seixas, Elisa de Carvalho
{"title":"儿童肝移植:照顾者的生活质量。","authors":"Ana Paula Bastos Tavares, Lucas Belém Pessôa de Melo Guerra Seixas, Caren Lopes Wanderlei Jayme, Gilda Porta, Renata Belém Pessôa de Melo Seixas, Elisa de Carvalho","doi":"10.5223/pghn.2022.25.6.489","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient's family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it.</p><p><strong>Methods: </strong>This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation.</p><p><strong>Results: </strong>Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; <i>p</i><0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents' perception of the child's health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; <i>p</i><0.05).</p><p><strong>Conclusion: </strong>The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child's care.</p>","PeriodicalId":19989,"journal":{"name":"Pediatric Gastroenterology, Hepatology & Nutrition","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/23/c2/pghn-25-489.PMC9679308.pdf","citationCount":"0","resultStr":"{\"title\":\"Pediatric Liver Transplantation: Caregivers' Quality of Life.\",\"authors\":\"Ana Paula Bastos Tavares, Lucas Belém Pessôa de Melo Guerra Seixas, Caren Lopes Wanderlei Jayme, Gilda Porta, Renata Belém Pessôa de Melo Seixas, Elisa de Carvalho\",\"doi\":\"10.5223/pghn.2022.25.6.489\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient's family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it.</p><p><strong>Methods: </strong>This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation.</p><p><strong>Results: </strong>Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; <i>p</i><0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents' perception of the child's health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; <i>p</i><0.05).</p><p><strong>Conclusion: </strong>The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child's care.</p>\",\"PeriodicalId\":19989,\"journal\":{\"name\":\"Pediatric Gastroenterology, Hepatology & Nutrition\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2022-11-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/23/c2/pghn-25-489.PMC9679308.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Pediatric Gastroenterology, Hepatology & Nutrition\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.5223/pghn.2022.25.6.489\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2022/11/2 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pediatric Gastroenterology, Hepatology & Nutrition","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.5223/pghn.2022.25.6.489","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/11/2 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"PEDIATRICS","Score":null,"Total":0}
Pediatric Liver Transplantation: Caregivers' Quality of Life.
Purpose: The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient's family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it.
Methods: This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation.
Results: Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; p<0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents' perception of the child's health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; p<0.05).
Conclusion: The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child's care.
期刊介绍:
Pediatric Gastroenterology, Hepatology and Nutrition (Pediatr Gastroenterol Hepatol Nutr), an official journal of The Korean Society of Pediatric Gastroenterology, Hepatology and Nutrition, is issued bimonthly and published in English. The aim of Pediatr Gastroenterol Hepatol Nutr is to advance scientific knowledge and promote child healthcare by publishing high-quality empirical and theoretical studies and providing a recently updated knowledge to those practitioners and scholars in the field of pediatric gastroenterology, hepatology and nutrition. Pediatr Gastroenterol Hepatol Nutr publishes review articles, original articles, and case reports. All of the submitted papers are peer-reviewed. The journal covers basic and clinical researches on molecular and cellular biology, pathophysiology, epidemiology, diagnosis, and treatment of all aspects of pediatric gastrointestinal diseases and nutritional health problems.