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1.
J Relig Health ; 2024 Jul 21.
Artículo en Inglés | MEDLINE | ID: mdl-39033480

RESUMEN

The present article aims to describe the different steps on how to design, develop and conduct quantitative and qualitative Spirituality and Health (S/H) studies from a Brazilian perspective, discussing definitions and instruments, and proposing a "how-to guide" for those interested in this field of research. A narrative review of the literature has been conducted by experts in the field of S/H aiming to develop a "how-to-guide". Spirituality is a very complex concept that has several challenges in the current scientific literature, including the lack of consensus in the definitions, the numerous dimensions assessed, the diverse instruments for measurement, the criticisms from other scholars, the great diversity of religious and cultural traditions and the growing number of "spiritual but not religious" individuals. This review supports that S/H studies may follow the high scientific standards, using consolidated research procedures and solid methods for both qualitative and quantitative research. Some peculiarities of the research methods for this field are discussed. S/H research is still under development, and there are several future directions for S/H studies, aiming to minimize previous criticisms and generating stronger evidence.

2.
Semin Oncol Nurs ; 40(4): 151655, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38782693

RESUMEN

OBJECTIVES: This study aimed to discuss how compassion fatigue (CF) develops and its repercussions on the personal and professional lives of oncology nurses. METHODS: A discursive article, with systematic searches were performed in seven databases to find publications on CF in oncology nurses. RESULTS: So as to better organize the findings, three categories were developed to present and discuss issues related to CF: (1) Characteristics of CF and its developments: describes the components related to CF and the manifestation of this phenomenon; (2) Repercussions of compassion fatigue: reports on the impact of CF on the personal and professional life of oncology nurses; and (3) Resources for dealing with compassion fatigue: lists interventions, sources of support, professional personal training, qualified nursing care in the face of adversity, and gratitude and recognition. CONCLUSION: the factors that trigger or protect CF are multifactorial, with the need for collective and individual interventions as a way of helping oncology nurses to protect themselves, to avoid or manage this phenomenon. CF has a direct clinical impact on the life of the oncology nurse, causing several changes. It also indirectly impacts the patient's life clinically, as it is a phenomenon that has repercussions on the provision of care. IMPLICATIONS FOR NURSING PRACTICE: CF affects the personal and professional lives of oncology nurses, so nurses need to seek resources to deal with it. Nursing staff employers and managers can use the evidence from this research to help nurses manage and protect themselves from compassion fatigue.


Asunto(s)
Desgaste por Empatía , Enfermería Oncológica , Humanos , Desgaste por Empatía/psicología , Agotamiento Profesional/psicología , Personal de Enfermería en Hospital/psicología , Femenino , Masculino
3.
Rev Bras Enferm ; 77(1): e20230029, 2024.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-38716905

RESUMEN

OBJECTIVE: To identify in the literature and summarize the elements and characteristics of fatherhood involved during pregnancy. METHOD: Scoping review that used PRISMA-ScR guide to report this review. Searches were carried out in PubMed, CINAHL, PsycInfo, LILACS and Scopus. Google search engines and public health agency websites assisted in searches of gray literature and Rayyan in screening studies. RESULTS: A total of 406 articles were identified, of which 16 made up the final sample. Five elements make up an involved fatherhood: feeling like a father, being a provider and protector, being a partner and participant in pregnancy, participating in prenatal appointments and feeling prepared to take care of a baby. CONCLUSION: Fathers want to be involved in prenatal care, but feel excluded from this process. Public policies that encourage paternal involvement and healthcare professional training to better welcome and promote paternal involvement are of paramount importance.


Asunto(s)
Padre , Humanos , Padre/psicología , Embarazo , Femenino , Masculino , Atención Prenatal/métodos , Atención Prenatal/normas
4.
J Pediatr Nurs ; 77: 13-20, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38471371

RESUMEN

PURPOSE: The mechanism of the impact of religion on health is still unclear, especially in children and adolescents with chronic illness who live in religious contexts. This study aimed to understand the influence of religion on coping with chronic diseases from the perspective of hospitalized children and adolescents diagnosed with cancer, type 1 diabetes mellitus and cystic fibrosis. DESIGN AND METHODS: Qualitative descriptive research used photo-elicitation interviews with 35 Brazilian children and adolescents with cancer, type 1 diabetes mellitus and cystic fibrosis, aged between 7 and 17 years old. A thematic analysis approach was used to analyze qualitative data. RESULTS: Participants were diagnosed with cystic fibrosis (14.3%), cancer (57.1%), and type 1 diabetes mellitus (28.6%) and 82.9% had a religious affiliation. Three themes were constructed: finding strength and support in the relationship with the divine, religion as an important source of meaning, and religious practice as a promoter of well-being. These themes demonstrate that children and adolescents themselves perceived their illness as a journey through which their faith grew. CONCLUSIONS: This research shows the influence of religion on the positive coping of chronic illness, being a source of strength and support from the relationship with the divine, as well as offering a source of meaning, purpose and well-being based on religious practices. PRACTICE IMPLICATIONS: This study supports clinical practice, based on the recognition of the patient as a religious and spiritualized person who has spiritual beliefs and needs that are capable of influencing treatment.


Asunto(s)
Adaptación Psicológica , Niño Hospitalizado , Fibrosis Quística , Investigación Cualitativa , Humanos , Niño , Masculino , Femenino , Adolescente , Enfermedad Crónica/psicología , Niño Hospitalizado/psicología , Fibrosis Quística/psicología , Brasil , Esperanza , Diabetes Mellitus Tipo 1/psicología , Neoplasias/psicología , Religión y Psicología , Adolescente Hospitalizado/psicología
5.
Rev. bras. enferm ; 77(1): e20230029, 2024. tab, graf
Artículo en Inglés | LILACS-Express | LILACS, BDENF - Enfermería | ID: biblio-1559452

RESUMEN

ABSTRACT Objective: To identify in the literature and summarize the elements and characteristics of fatherhood involved during pregnancy. Method: Scoping review that used PRISMA-ScR guide to report this review. Searches were carried out in PubMed, CINAHL, PsycInfo, LILACS and Scopus. Google search engines and public health agency websites assisted in searches of gray literature and Rayyan in screening studies. Results: A total of 406 articles were identified, of which 16 made up the final sample. Five elements make up an involved fatherhood: feeling like a father, being a provider and protector, being a partner and participant in pregnancy, participating in prenatal appointments and feeling prepared to take care of a baby. Conclusion: Fathers want to be involved in prenatal care, but feel excluded from this process. Public policies that encourage paternal involvement and healthcare professional training to better welcome and promote paternal involvement are of paramount importance.


RESUMEN Objetivo: Identificar en la literatura y resumir los elementos y características de la paternidad involucrada durante el embarazo. Método: Scoping review que utilizó la guía PRISMA-ScR para informar esta revisión. Las búsquedas se realizaron en las bases de datos PubMed, CINAHL, PsycInfo, LILACS y Scopus. Los motores de búsqueda de Google y los sitios web de agencias de salud pública ayudaron en las búsquedas de literatura gris y el software Rayyan en estudios de detección. Resultados: Se identificaron 406 artículos, 16 de los cuales constituyeron la muestra final. Cinco elementos componen una paternidad involucrada: sentirse padre, ser proveedor y protector, ser pareja y partícipe del embarazo, participar en las consultas prenatales y sentirse preparado para cuidar a un bebé. Conclusión: Los padres quieren participar en la atención prenatal, pero se sienten excluidos de este proceso. Las políticas públicas que fomenten la participación paterna y la formación de profesionales de la salud para acoger y promover mejor la participación paterna son de suma importancia.


RESUMO Objetivo: Identificar na literatura e sintetizar os elementos e as características da paternidade envolvida durante a gestação. Método: Scoping review que utilizou o guia PRISMA-ScR para reportar esta revisão. Buscas foram realizadas nas bases PubMed, CINAHL, PsycInfo, LILACS e Scopus. Os mecanismos de busca do Google e sites de órgãos de saúde pública auxiliaram nas buscas na literatura cinzenta e o software Rayyan na triagem dos estudos. Resultados: Foram capturados 406 artigos, dos quais 16 compuseram a amostra final. Cinco elementos compõem uma paternidade envolvida: sentir-se pai, ser provedor e protetor, ser parceiro e participativo na gravidez, participar das consultas de pré-natal e sentir-se preparado para cuidar do bebê. Conclusão: O pai deseja estar envolvido nos cuidados pré-natais, porém sente-se excluído deste processo. Políticas públicas que estimulem o envolvimento paterno e a capacitação de profissionais de saúde para melhor acolher e promover o envolvimento paterno são de suma importância.

6.
Rev Bras Enferm ; 76Suppl 4(Suppl 4): e20220403, 2023.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-37970980

RESUMEN

OBJECTIVES: to construct and validate an educational video storyboard about care for premature newborns at home. METHODS: a methodological study, with the construction of an educational video storyboard, validated with 14 judges. Content was selected from scoping review. For data collection, a validated instrument was used. The criterion for validity was agreement greater than 80%, analyzed using the Content Validity Index. RESULTS: the storyboard construction was guided by the Cognitive Theory of Multimedia Learning theoretical framework. Construction and validity took place from May to December 2020. The storyboard's final version lasted 10 minutes, and was validated in terms of objective, structure, presentation and relevance, with a Content Validity Index of 0.9. CONCLUSIONS: the storyboard of the educational video proved to be valid and adequate for health promotion in developing care for premature newborns at home.


Asunto(s)
Educación en Salud , Promoción de la Salud , Humanos , Recién Nacido , Tecnología Educacional , Aprendizaje , Encuestas y Cuestionarios
7.
Front Psychiatry ; 14: 1064137, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36873221

RESUMEN

Background: Although observational studies have already shown promising results of flourishing, a broader concept of health based on positive psychology, there is still a gap in the literature regarding studies that combine different topics of flourishing in a single intervention. Objectives: To develop a comprehensive and integrate intervention based on positive psychology gathering different topics of flourishing to improve mental health outcomes in individuals with depressive symptoms. Methods: The following steps were performed: (1) a comprehensive literature review; (2) the designing of a 12-session group intervention based on the values, virtues, and topics of flourishing; (3) assessment of the rationale, coherence, and feasibility by a panel of healthcare professionals answering semi-structured questions, and (4) application of an e-Delphi technique including mental health experts to reach a consensus of at least 80% for each item of the protocol. Results: A total of 25 experts participated in the study, 8 in the panel with semi-structured questions and 17 in the e-Delphi technique. A three-round e-Delphi technique was required to reach a consensus for all items. In the first round, a consensus was reached for 86.2% of the items. The remaining items (13.8%) were either excluded or reformulated. In the second round, a consensus was not obtained on one item, which was reformulated and approved in the third round. Qualitative analyses of the open questions were performed and suggestions for the protocol were considered. The final version of the intervention was composed of 12 weekly group sessions with 90-min each. The topics included in the intervention were physical and mental health, virtues and character strengths, love, gratitude, kindness, volunteering, happiness, social support, family, friends and community, forgiveness, compassion, resilience, spirituality, purpose and meaning of life, imagining the "best possible future," and flourishing. Conclusion: The flourishing intervention was successfully developed using an e-Delphi technique. The intervention is ready to be tested in an experimental study to verify its feasibility and effectiveness.

8.
Online braz. j. nurs. (Online) ; 22: e20236643, 01 jan 2023. ilus
Artículo en Inglés, Portugués | LILACS, BDENF - Enfermería | ID: biblio-1438026

RESUMEN

OBJETIVO: Sintetizar estudos qualitativos sobre as experiências de luto após um natimorto em pais que vivem na América Latina. MÉTODO: Revisão sistemática qualitativa realizada em quatro bases de dados eletrônica e que utilizou o Guideline Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A qualidade metodológica dos estudos incluídos foi avaliada usando o Critical Appraisal Skills Programme e uma síntese temática foi realizada. RESULTADOS: Um total de 110 estudos foram encontrados e quatro estudos eleitos com base nos critérios de elegibilidade. Quatro temas apresentam a experiência de luto parental: impacto, sofrimento e transformação após a morte fetal; preocupação com o corpo do bebê falecido; insatisfação com a qualidade da assistência em saúde; e família e religião como principais fontes de apoio. CONCLUSÃO: A natimortalidade na América Latina precisa ser explorada em pesquisas futuras e ainda é marcada pela desassistência no processo de luto.


OBJECTIVE: To synthesize qualitative studies on Latin American parents' grieving experiences after a stillbirth. METHOD: A systematic qualitative review was conducted in four electronic databases using the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guideline. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme, and a thematic synthesis was performed. RESULTS: One hundred ten studies were found, and four were chosen based on the eligibility criteria. Four themes were identified concerning the experience of parental grieving: impact, suffering, and transformation after fetal death; preoccupation with the deceased baby's body; dissatisfaction with the quality of health care; and family and religion as the primary sources of support. CONCLUSION: Stillbirth in Latin America must be explored in future research, and a lack of assistance still marks the grieving process.


Asunto(s)
Humanos , Padres , Aflicción , Mortinato , América Latina , Investigación Cualitativa
9.
Child Care Health Dev ; 49(1): 181-188, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35790488

RESUMEN

INTRODUCTION: The diagnosis of chronic illness in childhood implies frequent hospitalizations and, consequently, the interruption of school attendance. This study aimed to understand the process of school reintegration of children and adolescents with chronic illness from the mothers' perspective. METHOD: A qualitative descriptive-exploratory study was conducted with mothers who experienced the process of school reintegration of their child or adolescent, aged between 8 and 17 years old, and diagnosed with chronic illness. The participants were recruited by convenience and interviewed at the paediatric unit of a children's hospital. Data collection was interrupted when the data set was sufficient to answer the research question. The interviews were analysed using inductive thematic analysis. The study was approved by the research ethics committee. RESULTS: Eleven interviews were conducted, 10 with mothers and one with a grandmother, who played the maternal role. Participants' age ranged between 33 and 58 years old. A theme was developed-"School reintegration under the maternal vigilance"-which encompasses four subthemes: (1) What matters? My child's health comes first; (2) How to keep in touch with the school? (3) Back to the school: Are we ready? (4) Sharing vigilance: reality and expectations. The themes highlighted a cyclical, dynamic, and subjective school reintegration process, constantly permeated by maternal vigilance. CONCLUSION: A new understanding about school reintegration was evidenced, from the perspective of mothers of children and adolescents with different chronic illnesses. Mothers and children experience a nonlinear and recurrent process of leaving and returning to school, surrounded by a lack of communication and continuity in school activities. The results of this study may assist health professionals in planning care focused on the needs of the school reintegration of this population.


Asunto(s)
Madres , Instituciones Académicas , Femenino , Niño , Adolescente , Humanos , Adulto , Persona de Mediana Edad , Investigación Cualitativa , Enfermedad Crónica , Comunicación
10.
J Nurs Scholarsh ; 55(2): 413-428, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36209360

RESUMEN

PURPOSE: The diagnosis of children and adolescents with a chronic disease may affect the entire family system. When families have diverse structures, additional tensions can be present and affect the balance of family functioning. This metasynthesis aims to analyze and synthesize qualitative evidence on the functioning of structurally diverse families who live with adolescents and children with chronic disease. DESIGN: Qualitative metasynthesis. METHODS: Systematic searches up to 2021 were performed in PubMed, CINAHL, PsycINFO, SCOPUS, LILACS, and Web of Science and supplemented by manual search strategies. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. FINDINGS: Of a total of 6538 references identified, 9 studies were included in the metasynthesis. The thematic synthesis enabled the construction of three analytical themes: "Family structural changes and weakened co-parenting"; "Family rearrangements and the challenges faced by families"; and "Committed to healthy family functioning for the child's well-being: Searching for family homeostasis". CONCLUSIONS: The themes showed that the causes of the rupture in the family unit interfere in family functioning, making it ineffective. In most families, family functioning is centered on the mothers. Faced with the need to care for children and adolescents and to control chronic disease, structurally diverse families need to adjust their family functioning and search for family homeostasis. CLINICAL RELEVANCE: The results of this review can support nurses to target their care toward these families and formulate effective interventions that promote, strengthen, or maintain the healthy functioning of these families.


Asunto(s)
Estado de Salud , Madres , Humanos , Adolescente , Niño , Femenino , Enfermedad Crónica , Responsabilidad Parental , Investigación Cualitativa
11.
Rev. bras. enferm ; 76(supl.4): e20220403, 2023. tab, graf
Artículo en Inglés | LILACS-Express | LILACS, BDENF - Enfermería | ID: biblio-1521733

RESUMEN

ABSTRACT Objectives: to construct and validate an educational video storyboard about care for premature newborns at home. Methods: a methodological study, with the construction of an educational video storyboard, validated with 14 judges. Content was selected from scoping review. For data collection, a validated instrument was used. The criterion for validity was agreement greater than 80%, analyzed using the Content Validity Index. Results: the storyboard construction was guided by the Cognitive Theory of Multimedia Learning theoretical framework. Construction and validity took place from May to December 2020. The storyboard's final version lasted 10 minutes, and was validated in terms of objective, structure, presentation and relevance, with a Content Validity Index of 0.9. Conclusions: the storyboard of the educational video proved to be valid and adequate for health promotion in developing care for premature newborns at home.


RESUMEN Objetivos: construir y validar un video storyboard educativo sobre el cuidado del recién nacido prematuro en el domicilio. Métodos: estudio metodológico, con la construcción de un storyboard de video educativo, validado con 14 jueces. El contenido fue seleccionado de la revisión del alcance. Para la recolección de datos se utilizó un instrumento validado. El criterio de validación fue concordancia superior al 80%, analizado mediante el Índice de Validación de Contenido. Resultados: la construcción del storyboard fue guiada por el referencial teórico de la Teoría Cognitiva del Aprendizaje Multimedia. La construcción y validación se llevó a cabo de mayo a diciembre de 2020. La versión final del storyboard tiene una duración de 10 minutos y fue validada en cuanto a objetivos, estructura, presentación y relevancia, con un Índice de Validez de Contenido de 0,9. Conclusiones: el storyboard del video educativo se mostró válido y adecuado para la promoción de la salud en el desarrollo de la atención al recién nacido prematuro en el domicilio.


RESUMO Objetivos: construir e validar storyboard de vídeo educativo acerca dos cuidados com recém-nascido prematuro no domicílio. Métodos: estudo metodológico, com construção de storyboard de vídeo educativo, validado com 14 juízes. Selecionou-se o conteúdo a partir de revisão de escopo. Para coleta dos dados, utilizou-se instrumento validado. O critério para validação foi concordância superior a 80%, analisada por meio do Índice de Validação de Conteúdo. Resultados: a construção do storyboard foi guiada pelo referencial teórico da Teoria Cognitiva da Aprendizagem Multimídia. A construção e a validação ocorreram nos meses de maio a dezembro de 2020. A versão final do storyboard contém duração de 10 minutos, e foi validada quanto aos objetivos, estrutura, apresentação e relevância, com Índice de Validade de Conteúdo de 0,9. Conclusões: o storyboard do vídeo educativo se mostrou válido e adequado para promoção da saúde no desenvolvimento de cuidados ao recém-nascido prematuro no domicílio.

12.
Acta Paul. Enferm. (Online) ; 36: eAPE02411, 2023. tab, graf
Artículo en Portugués | LILACS-Express | LILACS, BDENF - Enfermería | ID: biblio-1419827

RESUMEN

Resumo Objetivo Analisar as evidências científicas sobre o impacto do tratamento hemodialítico no trabalho de pacientes com insuficiência renal crônica. Métodos Revisão de escopo realizada por meio de buscas em cinco bases de dados: PubMed, LILACS, CINAHL, PsyInfo e Scopus. Foram incluídos estudos publicados entre 2010 e 2020, nos idiomas português, espanhol e inglês, de abordagem qualitativa ou quantitativa, com pacientes em tratamento hemodialítico para insuficiência renal crônica, que tivessem foco no trabalho, emprego ou produtividade. Resultados Os 18 estudos incluídos na revisão mostram o impacto do tratamento hemodialítico na relação com o trabalho e as razões associadas à desempregabilidade. Tais razões envolvem características sociodemográficas, debilidade física, tratamento e apoio familiar e do empregador. Conclusão Após o início da hemodiálise, nota-se o comprometimento da capacidade funcional tanto física como psicológica dos pacientes, sendo necessárias alterações nos hábitos de vida em decorrência das restrições impostas pela insuficiência renal crônica e da diminuição da produtividade.


Resumen Objetivo Analizar las evidencias científicas sobre el impacto del tratamiento hemodialítico en el trabajo de pacientes con insuficiencia renal crónica. Métodos Revisión de alcance realizada mediante búsquedas en cinco bases de datos: PubMed, LILACS, CINAHL, PsyInfo y Scopus. Se incluyeron estudios publicados entre 2010 y 2020, en idioma portugués, español e inglés, de enfoque cualitativo o cuantitativo, con pacientes bajo tratamiento hemodialítico por insuficiencia renal crónica, que estuvieran centrados en el trabajo, empleo o productividad. Resultados Los 18 estudios incluidos en la revisión muestran el impacto del tratamiento hemodialítico en la relación con el trabajo y las razones asociadas al desempleo. Estas razones incluyen características sociodemográficas, debilidad física, tratamiento y apoyo familiar y del empleador. Conclusión Después del inicio de la hemodiálisis, se observa la capacidad funcional de los pacientes comprometida, tanto la física como la psicológica, por lo que los cambios en los hábitos de vida se hacen necesarios como consecuencia de las restricciones impuestas por la insuficiencia renal crónica y de la reducción de la productividad.


Abstract Objective To analyze the scientific evidence on the impact of hemodialysis treatment on the work of patients with chronic kidney disease. Methods This is a scoping review carried out through searches in five databases: PubMed, LILACS, CINAHL, PsyInfo and Scopus. We included studies published between 2010 and 2020, in Portuguese, Spanish and English, with a qualitative or quantitative approach, with patients undergoing hemodialysis for chronic kidney failure, who focused on work, employment or productivity. Results The 18 studies included in the review show the impact of hemodialysis treatment on the relationship with work and the reasons associated with unemployment. Such reasons involve sociodemographic characteristics, physical weakness, treatment and family and employer support. Conclusion After starting hemodialysis, we identified impairment in patients' functional capacity, both physical and psychological, requiring changes in life habits due to restrictions imposed by chronic kidney disease and decreased productivity.

13.
Front Psychol ; 13: 991771, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36225684

RESUMEN

This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor Analysis (EFA), Confirmatory Factor Analysis (CFA), and Item Response Theory (IRT) were used to test the internal structure. Reliability was determined with Cronbach's Alpha and McDonald's Omega. The EFA suggested a one-dimensional scale structure in contrast to the original 2-factor model or the 3-factor model which were not reproduced in the current CFA. All quality indicators for the EFA one-factor exceeded the required criteria (FDI = 0.97, EAP = 0.97, SR = 3.96 and EPTD = 0.96, latent GH = 0.90. and the observed GH = 0.85). The FACIT-Sp-12 for adolescents yielded strong evidence for a 1-factor model and with good reliability.

14.
Intensive Crit Care Nurs ; 72: 103277, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-35672209

RESUMEN

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.


Asunto(s)
Unidades de Cuidado Intensivo Pediátrico , Padres , Brasil , Niño , Niño Hospitalizado/psicología , Humanos , Padres/psicología , Investigación Cualitativa , Apoyo Social
15.
Rev Esc Enferm USP ; 55: e20200484, 2021.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-34423804

RESUMEN

OBJECTIVE: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients' family caregivers. METHODS: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. RESULTS: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. CONCLUSION: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.


Asunto(s)
Cuidadores , Neoplasias , Adolescente , Niño , Humanos , Neoplasias/tratamiento farmacológico , Dolor , Cuidados Paliativos
16.
J Pediatr Nurs ; 60: e39-e45, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33648836

RESUMEN

PURPOSE: To identify the spiritual needs of children and adolescents with chronic illnesses and how these needs are met by health professionals during hospitalization. DESIGN AND METHODS: A qualitative descriptive study was developed with 35 children and adolescents, between 7 and 18 years old, diagnosed with cancer, cystic fibrosis, and type 1 diabetes. Interviews with photo-elicitation were conducted during the hospitalization at a Brazilian public pediatric hospital. Findings were treated using thematic analysis, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) was followed for quality reporting. This research was approved by a research committee. RESULTS: Two themes emerged. The first, entitled 'Spiritual needs', encompasses five types of needs: (1) need to integrate meaning and purpose in life; (2) need to sustain hope; (3) need for expression of faith and to follow religious practices; (4) need for comfort at the end of life; and (5) need to connect with family and friends. The second theme was the 'Definition of spiritual care'. CONCLUSIONS: Children and adolescents with chronic illnesses have spiritual needs while in hospital. Meeting these needs is essential for finding meaning, purpose and hope in the experience of living with chronic illnesses and at the end of life, based on their faith, beliefs and interpersonal relationships. But, these needs have not been fully addressed during hospitalization. PRACTICE IMPLICATIONS: These results emphasize the need to implement spiritual care when caring for hospitalized pediatric patients, which includes addressing spiritual needs.


Asunto(s)
Amigos , Hospitalización , Adolescente , Niño , Enfermedad Crónica , Hospitales , Humanos , Investigación Cualitativa , Espiritualidad
17.
Death Stud ; 45(6): 420-436, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-31403372

RESUMEN

This meta-synthesis aims to synthesize qualitative evidence from primary studies to better understand the experience of the spirituality of parents and its relationship to adapting following stillbirth. Five electronic databases were systematically searched and the quality of 21 eligible studies was critically appraised. A thematic synthesis revealed two analytical themes: (1) Spiritual suffering following stillbirth; (2) Moving through spirituality to adapt to the loss, each encompassing four descriptive themes. The findings can inform a more culturally and spiritually sensitive approach to care, taking into account the parents' beliefs, folk customs, religion, values, and spiritual needs.


Asunto(s)
Terapias Espirituales , Espiritualidad , Femenino , Humanos , Padres , Embarazo , Religión , Mortinato
18.
J Pediatr Oncol Nurs ; 38(2): 116-130, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33269629

RESUMEN

Talking to children and adolescents with cancer about spirituality is a challenge. This study aimed to develop and evaluate a conversation model for a spiritual approach with children and adolescents with cancer. It was a methodological study with a systematic approach in three stages: (a) review of the literature for the selection of photographs and guiding questions, (b) using an expert committee to evaluate photographs and preselected questions, and (c) cognitive interview with children and adolescents to test the methodology. The expert committee evaluated and selected 20 photos and their respective guiding questions. Fifteen children and adolescents hospitalized with cancer tested the spirituality conversation model and expressed feelings, values, beliefs, fears, and the meaning they give to life and illness. The implementation of the conversation model can contribute both to the clinical practice, facilitating care for the spiritual dimension of pediatric patients, and to qualitative research on spirituality involving children.


Asunto(s)
Neoplasias , Terapias Espirituales , Adolescente , Niño , Comunicación , Humanos , Investigación Cualitativa , Espiritualidad
19.
Rev. Esc. Enferm. USP ; 55: e20200484, 2021. graf
Artículo en Inglés | BDENF - Enfermería, LILACS | ID: biblio-1287955

RESUMEN

ABSTRACT Objective: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients' family caregivers. Methods: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. Results: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. Conclusion: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.


RESUMEN Objetivo: Describir los síntomas asociados al tratamiento quimioterapico y las estrategias utilizadas para su gestión en la perspectiva de cuidadores familiares de pacientes oncológicos pediátricos. Método: Estudio descriptivo, con análisis cualitativo de los datos. La colecta de los datos ocurrió en un hospital pediátrico, entre los meses de diciembre de 2017 y diciembre de 2018, con cuidadores familiares de pacientes pediátricos en tratamiento quimioterapico. Se realizaron entrevistas semiestructuradas sometidas al análisis de contenido inductivo. Se utilizaron conceptos de la Symptom Management Theory para la discusión de los resultados. Resultados: Participaron 18 cuidadoras familiares. Fueron citados por las participantes: síntomas físicos, principalmente, debilidad, alopecia, baja inmunidad, dolor, mucositis, constipación, mareo y vómitos; síntomas emocionales o psicosociales, como tristeza y alteraciones del humor y síntomas constitucionales como inapetencia y fiebre. Medidas farmacológicas y no farmacológicas fueron mencionadas en la gestión de los síntomas y de los efectos adversos. Conclusión: Las participantes demostraron habilidades para identificar y gestionar los síntomas de la quimioterapia. Conocer la experiencia de esas familias puede auxiliar el enfermero en la planificación del cuidado y de intervenciones que atenúen esos eventos.


RESUMO Objetivo: Descrever os sintomas associados ao tratamento quimioterápico e as estratégias utilizadas para seu gerenciamento na perspectiva de cuidadores familiares de pacientes oncológicos pediátricos. Métodos: Estudo descritivo, com análise qualitativa dos dados. A coleta dos dados deu-se em um hospital pediátrico, de dezembro de 2017 a dezembro de 2018, com cuidadoras familiares de pacientes pediátricos em quimioterapia. Realizaram-se entrevistas semiestruturadas, submetidas à análise de conteúdo indutiva. Utilizaram-se conceitos da Symptom Management Theory para a discussão dos resultados. Resultados: Participaram 18 cuidadoras familiares. Foram citados pelas participantes: sintomas físicos, principalmente fraqueza, alopecia, baixa imunidade, dor, mucosite, constipação, náuseas e vômitos; sintomas emocionais ou psicossociais, como tristeza e alterações de humor; e sintomas constitucionais, como inapetência e febre. Medidas farmacológicas e não farmacológicas foram mencionadas no gerenciamento dos sintomas e dos efeitos adversos. Conclusão: As participantes demonstraram habilidades para identificar e gerenciar os sintomas da quimioterapia. Conhecer a experiência dessas famílias pode auxiliar o enfermeiro no planejamento do cuidado e de intervenções que minimizem esses eventos.


Asunto(s)
Enfermería Pediátrica , Quimioterapia , Neoplasias , Cuidadores , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos
20.
Eur J Med Genet ; 63(11): 104018, 2020 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-32739285

RESUMEN

Health professionals working in services providing genetic counseling need objective instruments to assess genetic counseling outcomes and also to "give a voice" to those using these services. Lack of knowledge regarding such outcomes may directly impact the effectiveness and the potential benefits of counseling, quality of life, health promotion, and empowerment of those receiving counseling. There are very few instruments available for most countries, however there are none in Brazil. In this context, this study aimed to adapt and preliminarily validate the Genetic Counseling Outcome Scale (GCOS-24), a Patient-Reported Outcome Measure (PROM), originally developed in British English. This methodological study recruited 278 individuals attending a medical genetic service at a Brazilian university hospital. We performed the translation, back-translation, semantic validation, pilot study and field study for testing of some psychometric properties. The instrument's internal consistency and test-retest reliability (stability) were assessed using Cronbach's alpha coefficient and Intraclass Correlation Coefficient, respectively. The Brazilian version of the GCOS-24 presented face and content validity, satisfactory internal consistency (Cronbach's α = 0.71), and moderate stability (ICC = 0.52). It was considered reliable, easily understood and relevant to assessing the genetic counseling outcomes for the study participants. Its construct validity still needs to be assessed to verify the instrument's internal structure and its potential use to measure change in empowerment following genetic counseling provided by Brazilian clinical genetics services.


Asunto(s)
Comparación Transcultural , Asesoramiento Genético/normas , Medición de Resultados Informados por el Paciente , Brasil , Asesoramiento Genético/métodos , Hospitales Universitarios , Humanos , Reproducibilidad de los Resultados , Semántica
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