Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas
Autor(a) principal: | |
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Data de Publicação: | 2019 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Biblioteca Digital de Teses e Dissertações da UFPB |
Texto Completo: | https://repositorio.ufpb.br/jspui/handle/123456789/18888 |
Resumo: | Chronic conditions (CC) are health problems that require continuous management for an indeterminate period of time. It is known that in childhood and adolescence, CC does not only affect the child / adolescent, but the whole family. However, the primary caregiver is the most affected family member, since he needs to change his whole routine to devote himself to care. In this perspective, the present study aimed to evaluate the quality of life of caregivers of children and adolescents with chronic conditions registered in the Information System for Children of Adolescents with Chronic Diseases (SICADC). It is a research of the analytical type, descriptive-explanatory, of quantitative nature, with a cross-sectional design. Data for the development of the study were obtained through the SICADC. Currently, the system has 300 children and adolescents enrolled, as well as their respective caregivers. Of these, 20 adolescents were over 18 years of age and 18 children / adolescents died. Thus, an accessible population of 262 caregivers remained. Based on this quantitative, a sample calculation with a confidence level of 95% and an error of 5.5% was obtained, thus obtaining a sample of 143 caregivers, who were selected from a physical process of randomization. Data collection took place between August and October 2018 and occurred as follows: after selecting a caregiver registered in SICADC, the researcher contacted the application for the quality of life instrument, the World Health Organization Quality of Life, abbreviated version (WHOQOL-Bref). Subsequently, the results of this measurement were evaluated along with the information provided in the SICADC. For the analysis of the data, Descriptive Statistics, a Binary Logistic Regression model and the Decision Tree were used. As a result, in a WHOQOL Bref analysis, the total quality of life score of the caregivers obtained a median of 61. Among the domains of the instrument, the domains of environment and social relations were most affected. From the binary logistic regression it was possible to identify the variables that had an impact on the poor quality of life of the caregiver. The model identified as risk factors for this outcome: the highest number of children with chronic conditions, the routine use of medication by the caregiver and the financial limitation after diagnosis of the child / adolescent. On the other hand, the regression pointed out that owning a home and having emotional support are protective factors. In turn, the decision tree selected variables that were able to predict whether the caregiver presented high or low quality of life, are: the number of children with a chronic condition, whether the caregiver has any disease, family involvement in care, housing situation, emotional support and restrictions related to the diagnosis of the child / adolescent. Thus, the study brought unique and timely information that proves that not only the chronically ill child / adolescent deserves attention, but also his / her caregivers. In this way, knowing the factors that can affect their quality of life, will collaborate with the decision making of health professionals, making them provide a more consistent and targeted assistance to the real needs of this public. |
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Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicasCuidadoresQualidade de vidaCondições crônicasCriançasAdolescentesCaregiversQuality of lifeChronic conditionsChildrenAdolescentsCNPQ::CIENCIAS DA SAUDE::SAUDE COLETIVAChronic conditions (CC) are health problems that require continuous management for an indeterminate period of time. It is known that in childhood and adolescence, CC does not only affect the child / adolescent, but the whole family. However, the primary caregiver is the most affected family member, since he needs to change his whole routine to devote himself to care. In this perspective, the present study aimed to evaluate the quality of life of caregivers of children and adolescents with chronic conditions registered in the Information System for Children of Adolescents with Chronic Diseases (SICADC). It is a research of the analytical type, descriptive-explanatory, of quantitative nature, with a cross-sectional design. Data for the development of the study were obtained through the SICADC. Currently, the system has 300 children and adolescents enrolled, as well as their respective caregivers. Of these, 20 adolescents were over 18 years of age and 18 children / adolescents died. Thus, an accessible population of 262 caregivers remained. Based on this quantitative, a sample calculation with a confidence level of 95% and an error of 5.5% was obtained, thus obtaining a sample of 143 caregivers, who were selected from a physical process of randomization. Data collection took place between August and October 2018 and occurred as follows: after selecting a caregiver registered in SICADC, the researcher contacted the application for the quality of life instrument, the World Health Organization Quality of Life, abbreviated version (WHOQOL-Bref). Subsequently, the results of this measurement were evaluated along with the information provided in the SICADC. For the analysis of the data, Descriptive Statistics, a Binary Logistic Regression model and the Decision Tree were used. As a result, in a WHOQOL Bref analysis, the total quality of life score of the caregivers obtained a median of 61. Among the domains of the instrument, the domains of environment and social relations were most affected. From the binary logistic regression it was possible to identify the variables that had an impact on the poor quality of life of the caregiver. The model identified as risk factors for this outcome: the highest number of children with chronic conditions, the routine use of medication by the caregiver and the financial limitation after diagnosis of the child / adolescent. On the other hand, the regression pointed out that owning a home and having emotional support are protective factors. In turn, the decision tree selected variables that were able to predict whether the caregiver presented high or low quality of life, are: the number of children with a chronic condition, whether the caregiver has any disease, family involvement in care, housing situation, emotional support and restrictions related to the diagnosis of the child / adolescent. Thus, the study brought unique and timely information that proves that not only the chronically ill child / adolescent deserves attention, but also his / her caregivers. In this way, knowing the factors that can affect their quality of life, will collaborate with the decision making of health professionals, making them provide a more consistent and targeted assistance to the real needs of this public.NenhumaAs condições crônicas (CC) constituem problemas de saúde que requerem gerenciamento contínuo por um período indeterminado de tempo. Sabe-se que na infância e adolescência, a CC não atinge apenas a criança/adolescente, porém toda sua família. No entanto, o cuidador principal é o membro familiar mais atingido, uma vez que ele precisa alterar toda sua rotina para dedicar-se ao cuidado. Nesta perspectiva, o presente estudo objetivou avaliar a qualidade de vida dos cuidadores de crianças e adolescentes com condições crônicas cadastradas no Sistema de Informação de Crianças de Adolescentes com Doenças Crônicas (SICADC). Trata-se de uma pesquisa do tipo analítica, descritiva-explicativa, de natureza quantitativa, com delineamento transversal. Os dados para desenvolvimento do estudo foram obtidos por meio do SICADC. Atualmente o sistema dispõe do cadastrado de 300 crianças e adolescentes, bem como de seus respectivos cuidadores. Destes, 20 adolescentes encontravam-se com mais de 18 anos e 18 crianças/adolescentes foram a óbito. Desse modo, restou uma população acessível de 262 cuidadores. Tendo por base esse quantitativo, foi realizado um cálculo amostral com um nível de confiança de 95% e erro de 5,5%, obtendo-se, assim, uma amostra de 143 cuidadores, os quais foram selecionados a partir de um processo físico de aleatorização. A coleta de dados ocorreu entre agosto e outubro de 2018 e deu-se da seguinte maneira: após selecionar um cuidador registrado no SICADC, o pesquisador entrou em contato com o mesmo para aplicação do instrumento de qualidade de vida, o World Health Organization Quality of Life, versão abreviada (WHOQOL-Bref). Posteriormente, os resultados dessa mensuração foram avaliados juntamente com as informações disponibilizadas no SICADC. Para análise dos dados, foi utilizada a Estatística Descritiva, um modelo de Regressão Logística Binária e a Árvore de Decisão. Como resultado, em uma análise do WHOQOL Bref, o escore total da qualidade de vida dos cuidadores obteve mediana 61. Dentre os domínios do instrumento, os mais afetados foram os domínios do meio ambiente e das relações sociais. A partir da regressão logística binária foi possível identificar as variáveis que possuíam impacto sobre a baixa qualidade de vida do cuidador. O modelo identificou como fatores de risco para este desfecho: o maior número de filhos com condições crônicas, o uso rotineiro de medicamento pelo cuidador e a limitação financeira após diagnóstico da criança/adolescente. Em contrapartida, a regressão apontou que a possuir casa própria e ter apoio emocional são fatores de proteção. Por sua vez, a árvore de decisão selecionou variáveis que foram capazes de predizer se o cuidador apresentava alta ou baixa qualidade de vida, são elas: o número de filhos com condição crônica, se o cuidador possui alguma doença, envolvimento da família no cuidado, situação de moradia, apoio emocional e restrições ligadas ao diagnóstico da criança/adolescente. Sendo assim, o estudo trouxe informações peculiares e pontuais que comprovam que não somente a criança/adolescente cronicamente adoecido merece atenção, mas também seus cuidadores. Desse modo, saber os fatores que podem afetar sua qualidade de vida, irá colaborar com a tomada de decisão dos profissionais de saúde, fazendo-os prestar uma assistência mais consistente e direcionada às reais necessidades deste público.Universidade Federal da ParaíbaBrasilCiências Exatas e da SaúdePrograma de Pós-Graduação em Modelos de Decisão e SaúdeUFPBSantos, Sérgio Ribeiro doshttp://lattes.cnpq.br/2057116013573850Nascimento, João Agnaldo dohttp://lattes.cnpq.br/6866270928240455Cardoso, Érika Leite da Silva2020-12-27T20:56:50Z2019-03-272020-12-27T20:56:50Z2019-02-28info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesishttps://repositorio.ufpb.br/jspui/handle/123456789/18888porhttp://creativecommons.org/licenses/by-nd/3.0/br/info:eu-repo/semantics/openAccessreponame:Biblioteca Digital de Teses e Dissertações da UFPBinstname:Universidade Federal da Paraíba (UFPB)instacron:UFPB2021-08-27T13:13:37Zoai:repositorio.ufpb.br:123456789/18888Biblioteca Digital de Teses e Dissertaçõeshttps://repositorio.ufpb.br/PUBhttp://tede.biblioteca.ufpb.br:8080/oai/requestdiretoria@ufpb.br|| diretoria@ufpb.bropendoar:2021-08-27T13:13:37Biblioteca Digital de Teses e Dissertações da UFPB - Universidade Federal da Paraíba (UFPB)false |
dc.title.none.fl_str_mv |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
title |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
spellingShingle |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas Cardoso, Érika Leite da Silva Cuidadores Qualidade de vida Condições crônicas Crianças Adolescentes Caregivers Quality of life Chronic conditions Children Adolescents CNPQ::CIENCIAS DA SAUDE::SAUDE COLETIVA |
title_short |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
title_full |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
title_fullStr |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
title_full_unstemmed |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
title_sort |
Qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas |
author |
Cardoso, Érika Leite da Silva |
author_facet |
Cardoso, Érika Leite da Silva |
author_role |
author |
dc.contributor.none.fl_str_mv |
Santos, Sérgio Ribeiro dos http://lattes.cnpq.br/2057116013573850 Nascimento, João Agnaldo do http://lattes.cnpq.br/6866270928240455 |
dc.contributor.author.fl_str_mv |
Cardoso, Érika Leite da Silva |
dc.subject.por.fl_str_mv |
Cuidadores Qualidade de vida Condições crônicas Crianças Adolescentes Caregivers Quality of life Chronic conditions Children Adolescents CNPQ::CIENCIAS DA SAUDE::SAUDE COLETIVA |
topic |
Cuidadores Qualidade de vida Condições crônicas Crianças Adolescentes Caregivers Quality of life Chronic conditions Children Adolescents CNPQ::CIENCIAS DA SAUDE::SAUDE COLETIVA |
description |
Chronic conditions (CC) are health problems that require continuous management for an indeterminate period of time. It is known that in childhood and adolescence, CC does not only affect the child / adolescent, but the whole family. However, the primary caregiver is the most affected family member, since he needs to change his whole routine to devote himself to care. In this perspective, the present study aimed to evaluate the quality of life of caregivers of children and adolescents with chronic conditions registered in the Information System for Children of Adolescents with Chronic Diseases (SICADC). It is a research of the analytical type, descriptive-explanatory, of quantitative nature, with a cross-sectional design. Data for the development of the study were obtained through the SICADC. Currently, the system has 300 children and adolescents enrolled, as well as their respective caregivers. Of these, 20 adolescents were over 18 years of age and 18 children / adolescents died. Thus, an accessible population of 262 caregivers remained. Based on this quantitative, a sample calculation with a confidence level of 95% and an error of 5.5% was obtained, thus obtaining a sample of 143 caregivers, who were selected from a physical process of randomization. Data collection took place between August and October 2018 and occurred as follows: after selecting a caregiver registered in SICADC, the researcher contacted the application for the quality of life instrument, the World Health Organization Quality of Life, abbreviated version (WHOQOL-Bref). Subsequently, the results of this measurement were evaluated along with the information provided in the SICADC. For the analysis of the data, Descriptive Statistics, a Binary Logistic Regression model and the Decision Tree were used. As a result, in a WHOQOL Bref analysis, the total quality of life score of the caregivers obtained a median of 61. Among the domains of the instrument, the domains of environment and social relations were most affected. From the binary logistic regression it was possible to identify the variables that had an impact on the poor quality of life of the caregiver. The model identified as risk factors for this outcome: the highest number of children with chronic conditions, the routine use of medication by the caregiver and the financial limitation after diagnosis of the child / adolescent. On the other hand, the regression pointed out that owning a home and having emotional support are protective factors. In turn, the decision tree selected variables that were able to predict whether the caregiver presented high or low quality of life, are: the number of children with a chronic condition, whether the caregiver has any disease, family involvement in care, housing situation, emotional support and restrictions related to the diagnosis of the child / adolescent. Thus, the study brought unique and timely information that proves that not only the chronically ill child / adolescent deserves attention, but also his / her caregivers. In this way, knowing the factors that can affect their quality of life, will collaborate with the decision making of health professionals, making them provide a more consistent and targeted assistance to the real needs of this public. |
publishDate |
2019 |
dc.date.none.fl_str_mv |
2019-03-27 2019-02-28 2020-12-27T20:56:50Z 2020-12-27T20:56:50Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
format |
masterThesis |
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publishedVersion |
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https://repositorio.ufpb.br/jspui/handle/123456789/18888 |
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https://repositorio.ufpb.br/jspui/handle/123456789/18888 |
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por |
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http://creativecommons.org/licenses/by-nd/3.0/br/ info:eu-repo/semantics/openAccess |
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http://creativecommons.org/licenses/by-nd/3.0/br/ |
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openAccess |
dc.publisher.none.fl_str_mv |
Universidade Federal da Paraíba Brasil Ciências Exatas e da Saúde Programa de Pós-Graduação em Modelos de Decisão e Saúde UFPB |
publisher.none.fl_str_mv |
Universidade Federal da Paraíba Brasil Ciências Exatas e da Saúde Programa de Pós-Graduação em Modelos de Decisão e Saúde UFPB |
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reponame:Biblioteca Digital de Teses e Dissertações da UFPB instname:Universidade Federal da Paraíba (UFPB) instacron:UFPB |
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Biblioteca Digital de Teses e Dissertações da UFPB |
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Biblioteca Digital de Teses e Dissertações da UFPB |
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Biblioteca Digital de Teses e Dissertações da UFPB - Universidade Federal da Paraíba (UFPB) |
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