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1.
Child Care Health Dev ; 49(1): 181-188, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35790488

RESUMO

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.


Assuntos
Mães , Instituições Acadêmicas , Feminino , Criança , Adolescente , Humanos , Adulto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Doença Crônica , Comunicação
2.
Pain Manag Nurs ; 20(5): 444-454, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31103497

RESUMO

OBJECTIVES: This integrative review aimed to synthesize and critically evaluate the methodological quality of the evidence on parent's participation in managing their children's postoperative pain at home. DESIGN: Integrative review. DATA SOURCES: To locate relevant articles, two reviewers independently searched four electronic databases systematically using predefined inclusion and exclusion criteria. REVIEW/ANALYSIS METHODS: The methodological quality of 23 eligible studies was critically appraised using published evaluation criteria. A qualitative content analysis was then conducted to synthesize findings of the studies to identify thematic trends and factors on the nature of parents' participation and ability to effectively manage their children's pain at home. RESULTS: Methodological quality of most of the 15 surveys was adequate, whereas shortcomings were identified in 6 of the 7 clinical trials and the 1 qualitative study that were included in this review. The three themes identified pertained to parent use of informational sources, postoperative pain medications, and nonpharmacologic pain treatment approaches. Results indicate parents lack the information they need to effectively make use of pharmacologic and nonpharmacologic pain treatment approaches. CONCLUSIONS: There is need to improve communication between parents and health professionals before and after the child's surgery and to provide parents with specific verbal and written instructions and strategies on how to assess and manage their children's pain.


Assuntos
Manejo da Dor/normas , Dor Pós-Operatória/terapia , Pais/psicologia , Participação do Paciente/métodos , Adulto , Criança , Feminino , Humanos , Masculino , Manejo da Dor/métodos , Manejo da Dor/psicologia , Medição da Dor/métodos , Dor Pós-Operatória/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Participação do Paciente/psicologia , Pesquisa Qualitativa , Inquéritos e Questionários
3.
Nurs Health Sci ; 18(1): 30-7, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26177221

RESUMO

Children are considered competent social actors. Although they are able to express their opinions, they may have some difficulties in answering direct verbal questions, requiring researchers and health professionals to enter their world by using auxiliary resources for communication. This study presents the experience of using finger puppets as a playful strategy for improving interaction and communication with hospitalized children with cancer, aged seven to 12. It describes the strategy of making and using puppets as an auxiliary tool to communicate with children with cancer and presents the results and limitations of using puppets in clinical practice. The use of the puppets, creatively and in accordance with the children's motor, cognitive, and emotional development, showed benefits, such as allowing the children to freely express themselves; respecting their autonomy; and minimizing the hierarchical adult-child relationship. The use of puppets is an appropriate strategy to communicate with hospitalized children. This tool can also enrich clinical practice, as it encourages children with cancer to report their experience of being ill and also helps the health team during evaluation and intervention.


Assuntos
Comunicação , Neoplasias/psicologia , Ludoterapia/métodos , Jogos e Brinquedos , Brasil , Criança , Feminino , Hospitais de Ensino , Humanos , Masculino , Relações Enfermeiro-Paciente , Pesquisa Qualitativa , Relações Pesquisador-Sujeito
4.
J Nurs Scholarsh ; 47(2): 143-51, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25639151

RESUMO

PURPOSE: To analyze coping strategies used by children with cancer undergoing chemotherapy during hospitalization. DESIGN AND METHODS: This was an exploratory study to analyze qualitative data using an inductive thematic analysis. Semistructured interviews using puppets were conducted with 10 children with cancer, between 7 and 12 years old, who were hospitalized and undergoing chemotherapy. FINDINGS: The coping strategies to deal with chemotherapy were: understanding the need for chemotherapy; finding relief for the chemotherapy's side effects and pain; seeking pleasure in nourishment; engaging in entertaining activities and having fun; keeping the hope of cure alive; and finding support in religion. CONCLUSIONS: Children with cancer undergoing chemotherapy need to cope with hospitalizations, pain, medication side effects, idle time, and uncertainty regarding the success of treatment. These challenges motivated children to develop their own coping strategies, which were effective while undergoing chemotherapy. CLINICAL RELEVANCE: By gaining knowledge and further understanding about valid coping strategies during chemotherapy treatment, health professionals can mobilize personal and material resources from the children, health teams, and institutions aiming to potentiate the use of these strategies to make treatments the least traumatic.


Assuntos
Adaptação Psicológica , Criança Hospitalizada/psicologia , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Antineoplásicos/uso terapêutico , Criança , Feminino , Humanos , Masculino , Recreação , Religião , Incerteza
5.
Children (Basel) ; 11(2)2024 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-38397320

RESUMO

Sleep is of vital necessity for health, and it has a restorative and protective function for children and adolescents with chronic conditions and their families. The purpose of this study was to identify the scientific production on sleep patterns in children and adolescents with chronic conditions and their families. This integrative review was conducted between March and June 2022 using the databases of MEDLINE, Web of Science, CINAHL and PsycINFO. The articles included were original papers published between January 2007 and mid-2022. Excluded were review studies that did not evaluate sleep and whose participants did not have chronic conditions or were not children, adolescents and/or their families. The searches returned 814 abstracts. After exclusions, 47 studies were selected to be read in full; of these, 29 were selected and were grouped empirically into four categories: major alterations in the sleep patterns of children and adolescents with chronic conditions; the relationship between sleep disorders and symptoms in children and adolescents with chronic conditions; the impaired sleep patterns of families of children and adolescents with chronic conditions; and sleep alterations and their relationship with other problems in families of children and adolescents with chronic conditions. All studies showed sleep pattern impairment in children and adolescents with chronic conditions as well as their families.

6.
Rev Lat Am Enfermagem ; 30(spe): e3717, 2022.
Artigo em Inglês, Português, Espanhol | MEDLINE | ID: mdl-36351085

RESUMO

OBJECTIVE: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. METHOD: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. RESULTS: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. CONCLUSION: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group. KEYPOINTS: (1) Adolescents' voice is a priority in reporting chemotherapy-related adverse events. (2) Adverse events (AEs) inquiry may best be initiated with open-ended questions. (3) Elicitation studies can include the voices of the target population. (4) Adolescents with cancer can self-report clinically relevant chemotherapy AEs.


Assuntos
Neoplasias , Medidas de Resultados Relatados pelo Paciente , Adolescente , Humanos , Criança , Estudos Prospectivos , Brasil , Autorrelato , Neoplasias/tratamento farmacológico , Neoplasias/psicologia
7.
Intensive Crit Care Nurs ; 72: 103277, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35672209

RESUMO

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.


Assuntos
Unidades de Terapia Intensiva Pediátrica , Pais , Brasil , Criança , Criança Hospitalizada/psicologia , Humanos , Pais/psicologia , Pesquisa Qualitativa , Apoio Social
8.
Rev Bras Enferm ; 74Suppl 1(Suppl 1): e20201049, 2021.
Artigo em Inglês, Português | MEDLINE | ID: mdl-34259723

RESUMO

OBJECTIVE: Reflect on the implications of COVID-19 for the nursing care of pediatric oncology patients. METHODS: Theoretical and reflective essay, based on recent scientific publications and expert recommendations on the care of pediatric patients under cancer treatment in the context of the current pandemic. RESULTS: Reflected on the involvement of the pediatric population in general by COVID-19, the vulnerability of pediatric oncology patients to the complications of the disease and the likely challenges for their care. The pandemic demanded a rapid adaptation of health services in terms of patient care flow, care protocols, infection prevention measures, and redefinition of cancer therapy, with repercussions for professionals, patients, and their families. FINAL CONSIDERATIONS: It is not yet known how often or how severely children with cancer have been affected by COVID-19, but therapeutic and care adaptations for the maintenance of these patients' treatment in the pandemic context are noted.


Assuntos
COVID-19 , Neoplasias , Cuidados de Enfermagem , Adolescente , Criança , Humanos , Neoplasias/complicações , Pandemias , SARS-CoV-2
9.
Rev Esc Enferm USP ; 55: e20200484, 2021.
Artigo em Inglês, Português | MEDLINE | ID: mdl-34423804

RESUMO

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.


Assuntos
Cuidadores , Neoplasias , Adolescente , Criança , Humanos , Neoplasias/tratamento farmacológico , Dor , Cuidados Paliativos
10.
J Pediatr Oncol Nurs ; 37(6): 444-457, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32715930

RESUMO

This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.


Assuntos
Adaptação Psicológica , Luto , Pesar , Neoplasias/mortalidade , Neoplasias/psicologia , Pais/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
12.
J Pediatr Oncol Nurs ; 36(6): 436-447, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31027449

RESUMO

Symptom management knowledge is a priority for pediatric oncology nursing research. Theories and models can frame the studies of symptoms experienced during childhood cancer. This article describes and analyzes the middle-range theory, theory of unpleasant symptoms (TOUS), for its conceptual and empirical fit with pediatric oncology nursing based on its current use in adult oncology research and its limited use to date in pediatric oncology. Searches in PubMed and CINAHL databases using the keywords theory of unpleasant symptoms and cancer and covering the time period 2000 to 2017 yielded 103 abstracts for review. Twenty published reports met eligibility criteria for review; only one included pediatric oncology patients. No study to date has tested all the components of the TOUS in pediatrics. The TOUS component of performance appears to be underaddressed across completed studies that instead include a focus on patient-reported quality of life rather than on perceived behavioral or performance indicators concurrent with the subjective symptom reports. Additionally, the influence of family, essential in pediatric oncology, is absent in the majority of studies guided by the TOUS. The TOUS is a structurally complicated framework that would be a conceptual fit for pediatric oncology if family influence and perceived function were included. Studies across this population and guided by the TOUS are needed, although testing all the theorized linkages in the TOUS would likely require a large sample size of patients and, thereby, multisite approaches given that cancer is a rare disease in childhood.


Assuntos
Neoplasias/enfermagem , Neoplasias/psicologia , Enfermagem Oncológica , Cuidados Paliativos/psicologia , Enfermagem Pediátrica , Qualidade de Vida/psicologia , Adulto , Criança , Feminino , Humanos , Masculino , Pesquisa em Enfermagem , Teoria de Enfermagem
13.
Rev Gaucha Enferm ; 40: e20180238, 2019 Jun 06.
Artigo em Português, Inglês | MEDLINE | ID: mdl-31188974

RESUMO

OBJECTIVE: To describe the experiences of parents of children and adolescents with leukemia in regards to the transition from hospital care to home. METHOD: A qualitative, descriptive study conducted with nine mothers and two fathers, in a pediatric public hospital. The data were collected through semi-structured interviews, from May 2017 to January 2017, organized in the software Atlas.ti 7® and submitted to inductive content analysis. The Change Theory was used as theoretical framework. RESULTS: The central category was "Returning home: the birth of a new reality", which originated three subcategories: apprehension with the new reality of care; immediate impact of changes; and implementing the guidance plan. CONCLUSION: The transition to the home setting made parents adapt to a new and complex reality of care. Improvements in the planning and systematization of the first hospital discharge are necessary.


Assuntos
Adaptação Psicológica , Pais/psicologia , Alta do Paciente , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Cuidado Transicional , Adolescente , Adulto , Criança , Pré-Escolar , Pai/psicologia , Feminino , Guias como Assunto , Assistência Domiciliar , Hospitais Pediátricos , Humanos , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Mães/psicologia , Pesquisa Qualitativa
14.
J Pediatr Health Care ; 33(4): 404-414, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30846334

RESUMO

Malignancy- and cancer-related treatments lead to multiple symptoms. Although treatments focus on cure, few research studies have examined the symptoms that accompany these aggressive and complicated treatments. The purpose of the study was to evaluate the symptoms experienced by children at home. Children (n = 25) and adolescents (n = 33) diagnosed with cancer completed the Memorial Symptoms Assessment Scale during the 5 days at home after discharge from the hospital. The most frequent physical symptoms were fatigue (52.1%), nausea (50.7%), lack of appetite (43.7%), and pain (42.3%). The most frequent psychological symptoms were difficulty sleeping (21.1%), worrying (18.3%), feeling sad (18.3%), and feeling nervous (16.9%). Significant differences were found in the overall physical and psychosocial symptoms and Global Distress Index in patients with and without pain, fatigue, and nausea. Results indicated that physical and psychosocial symptoms and Global Distress Index increased as severity of pain, nausea, and fatigue increased. Children and adolescents were experiencing many symptoms at home but were often not reporting them.


Assuntos
Neoplasias/psicologia , Angústia Psicológica , Adolescente , Apetite , Criança , Fadiga/etiologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Náusea/etiologia , Náusea/psicologia , Neoplasias/complicações , Dor/etiologia , Dor/psicologia , Alta do Paciente , Índice de Gravidade de Doença , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia
15.
J Holist Nurs ; 36(2): 192-204, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28589782

RESUMO

PURPOSE: Although some studies have suggested that music can positively affect physical and psychological variables, few have evaluated its effects on spirituality. This study aimed to evaluate the effects of musical interventions on the spirituality of patients, regardless of diagnoses. METHOD: This was a systematic literature review that followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations conducted through a relevant search of terms in six databases (PubMed, Web of Science, CINAHL, PsycINFO, ScienceDirect, and LILACS) without temporal delimitation. Experimental or quasi-experimental studies were included, involving participants regardless of diagnoses, to assess the effect of music on spirituality, either through musical intervention as music medicine or through music therapy. The methodological quality of included studies was evaluated using the Physiotherapy Evidence Database scale. RESULTS: A total of 147 studies were identified; 7 met the inclusion criteria. Five studies were randomized controlled trials involving six music therapists leading the musical intervention with the active participation of patients. The interventions used were heterogeneous. Three studies were associated with improved spirituality after the intervention. Four studies used measurements to evaluate spiritual well-being. CONCLUSION: This review did not allow ascertaining the positive impact of music intervention on spirituality in patients, which motivates further research.


Assuntos
Musicoterapia/normas , Espiritualidade , Adaptação Psicológica , Humanos , Música/psicologia , Musicoterapia/métodos
16.
J Child Health Care ; 22(2): 186-204, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29361838

RESUMO

Fatigue is among the most common, debilitating, and distressing symptoms associated with chronic condition in pediatric population. The purpose of this study was to identify non-pharmacological fatigue interventions in children and adolescents with cancer. For this, we carried out an integrative review of the literature from January 2000 to December 2016. A comprehensive search of four databases was conducted: Cumulative Index to Nursing and Allied Health Literature, Psychology Information, Medline via PubMed, and Web of Science. Randomized controlled trial, quasi-experimental, case-control and cohort studies were included in this review. Thirteen relevant studies were included for analysis. Seven papers reported positive outcomes for exercise, exercise plus leisure activities, healing touch and acupressure. In another six papers using exercise, exercise plus psychological intervention and massage, no effectiveness was found. Effective management of fatigue in children and adolescents is important but research in this area is limited, so the results of this review should be interpreted cautiously. Future researchers are encouraged to test the effective interventions in homogenous cancer populations and in other groups where fatigue is a common concern.


Assuntos
Doença Crônica/terapia , Terapia por Exercício/métodos , Fadiga/etiologia , Fadiga/terapia , Neoplasias/complicações , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino
17.
Rev. enferm. UERJ ; 31: e72594, jan. -dez. 2023.
Artigo em Inglês, Português | LILACS, BDENF | ID: biblio-1525579

RESUMO

Objetivo: compreender por meio da técnica Desenhar, escrever e contar como a condição crônica influencia na qualidade de vida infantojuvenil; e analisar o uso da técnica nessa população. Método: estudo qualitativo, descritivo e exploratório. Participaram onze crianças e adolescentes com condição crônica entre sete e dezessete anos. A coleta de dados ocorreu mediante entrevista semiestruturada, com auxílio da técnica Desenhar, escrever e contar, em um Hospital público. Para análise dos dados utilizou-se a análise de conteúdo temática de Bardin. Resultados: emergiram três categorias que evidenciam diversas alterações na qualidade de vida dessa clientela, com destaque para o comprometimento físico, emocional e social que impacta nas de experiências que compõem a infância e a adolescência. A técnica Desenhar, escrever e contar foi um facilitador e enriqueceu a coleta de dados. Considerações finais: a técnica escolhida possibilitou identificar a qualidade de vida prejudicada da criança e adolescente com condição crônica(AU)


Objective: to understand, through the Draw, Write and Tell interview technique how chronic condition influences pediatric quality of life; To analyze the use of the technique in this population. Method: qualitative, descriptive, exploratory study. Eleven children and adolescents with chronic conditions between seven and seventeen years old participated. Data collection took place through semi-structured interviews, with the aid of the Draw, Write and Tell interview technique, in State University Hospital. For data analysis, thematic content analysis according to Bardin was used. Results: three categories emerged that show several changes in the quality of life of this clientele, with emphasis on the physical, emotional and social impairment that impact on the experiences that make up childhood and adolescence. The Draw, Write and Tell interview technique facilitated and enriched data collection. Final considerations: The chosen technique made it possible to identify the impaired quality of life of children and adolescents with chronic conditions(AU)


Objetivo: comprender, a través de la técnica de entrevista Dibujar, Escribir y Contar, cómo la condición crónica influye en la calidad de vida infantojuvenil; y analizar el uso de la técnica en esta población. Método: estudio cualitativo, descriptivo y exploratorio. Participaron once niños y adolescentes, con condiciones crónicas, de siete a diecisiete años. La recolección de datos ocurrió por medio de entrevistas semiestructuradas, con el auxilio de la técnica de entrevista Dibujar, Escribir y Contar, en un hospital público. En cuanto al análisis de datos, se utilizó el análisis de contenido temático de Bardin. Resultados: surgieron tres categorías que muestran varios cambios en la calidad de vida de esta clientela, con énfasis en el deterioro físico, emocional y social que tiene un gran impacto en las experiencias que componen la infancia y la adolescencia. La técnica Dibujar, Escribir y Contar facilitó y enriqueció la recolección de datos. Consideraciones finales: la técnica elegida permitió identificar la calidad de vida deteriorada de niños y adolescentes con condiciones crónicas(AU)


Assuntos
Humanos , Masculino , Feminino , Criança , Adolescente , Qualidade de Vida/psicologia , Criança Hospitalizada/psicologia , Doença Crônica , Adolescente Hospitalizado/psicologia , Pesquisa Qualitativa , Hospitais Públicos , Hospitais Universitários
18.
Rev. latinoam. enferm. (Online) ; 30(spe): e3717, 2022. graf
Artigo em Inglês | LILACS, BDENF | ID: biblio-1409635

RESUMO

Abstract Objective: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. Method: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. Results: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. Conclusion: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group.


Resumo Objetivo: documentar a compreensão dos adolescentes sobre os principais eventos adversos relacionados à quimioterapia a partir da versão Pediátrica dos Desfechos Relatados pelo Paciente (Patient-Reported Outcomes) dos Critérios de Terminologia Comum para Eventos Adversos (Common Terminology Criteria for Adverse Events), e assim iniciar o processo de validação dos itens desta ferramenta com adolescentes brasileiros. Método: trata-se de um estudo prospectivo, qualitativo, de elicitação de conceitos. Participaram do estudo 17 adolescentes de 13 a 18 anos, submetidos à quimioterapia em três hospitais da cidade de São Paulo-SP, Brasil. Foram realizadas entrevistas cognitivas com perguntas baseadas em eventos adversos relacionados à quimioterapia. Os dados foram analisados quanto à responsividade e ausência de resposta. Resultados: os adolescentes puderam e estavam dispostos a fornecer informações descritivas sobre seus eventos adversos quimioterápicos, incluindo eventos físicos e emocionais. Alguns participantes sugeriram nomes alternativos para os eventos adversos e alguns usaram termos mais complexos, mas a maioria ficou satisfeita com aqueles utilizados pelos pesquisadores. Conclusão: este estudo representa os primeiros passos para entender como os adolescentes com câncer identificam, nomeiam e descrevem esses eventos por meio de entrevistas cognitivas para ajudar a criar futuros instrumentos de avaliação focados nessa faixa etária.


Resumen Objetivo: documentar la comprensión de los adolescentes de los principales eventos adversos relacionados con la quimioterapia a partir de la versión de los Criterios Terminológicos Comunes para Eventos Adversos reportados por los pacientes pediátricos y así iniciar el proceso de validación de los ítems de esta herramienta con adolescentes brasileños. Método: este es un estudio prospectivo y cualitativo de elicitación de conceptos. Los participantes fueron 17 adolescentes de entre 13 y 18 años de edad que recibían quimioterapia en tres hospitales de São Paulo-SP, Brasil. Se realizaron entrevistas cognitivas con preguntas basadas en eventos adversos relacionados con la quimioterapia. Los datos se analizaron en función de la presencia y ausencia de respuesta. Resultados: los adolescentes podían y estaban dispuestos a proporcionar información descriptiva sobre los efectos adversos de la quimioterapia, incluidos los físicos y emocionales. Algunos participantes sugirieron términos alternativos para denominar los eventos adversos y otros utilizaron términos más complejos, pero la mayoría se mostró satisfecha con los términos principales utilizados por los investigadores. Conclusión: este estudio representa los primeros pasos hacia la comprensión de cómo los pacientes adolescentes con cáncer identifican, nombran y describen estos eventos mediante entrevistas cognitivas para ayudar a diseñar futuros instrumentos de evaluación centrados en este grupo de edad.


Assuntos
Humanos , Criança , Adolescente , Brasil , Estudos Prospectivos , Autorrelato , Medidas de Resultados Relatados pelo Paciente , Neoplasias/psicologia , Neoplasias/tratamento farmacológico
19.
Rev. bras. cancerol ; 67(2): e-031027, 2021.
Artigo em Português | LILACS | ID: biblio-1223889

RESUMO

Introdução: A dor em crianças com doenças malignas relaciona-se à própria doença ou aos procedimentos diagnóstico-terapêuticos. Independentemente da causa, a criança deve ter a sua dor adequadamente tratada. Acredita-se que o controle adequado da dor ocorra em 70% a 90% dos casos, quando se empregam terapias específicas, incluindo-se a combinação de analgésicos e intervenções não farmacológicas. Objetivo: Identificar na literatura especializada métodos não farmacológicos atuais para o manejo da dor em oncologia pediátrica. Método: Revisão integrativa da literatura, com artigos selecionados entre os anos de 2008 e 2018, nas bases de dados Biblioteca Virtual em Saúde (BVS), PubMed, Web of Science e Cumulative Index to Nursing and Allied Health Literature (CINAHL). Analisaram-se 11 artigos, selecionados com base nas recomendações do Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).Resultados: Três categorias sintetizaram os principais resultados, a saber: dor em oncologia pediátrica e instrumentos de avaliação; benefícios das terapias complementares para o manejo da dor oncológica pediátrica; e efeitos adversos das terapias complementares. Conclusão: Considerando-se a dor como um sintoma debilitante para a população pediátrica em tratamento oncológico, é necessário que as avaliações feitas pelos profissionais da saúde sejam fidedignas às suas características para o manejo adequado. O manejo da dor não se limita apenas às terapias farmacológicas, algumas intervenções levantadas podem complementar a ação dos medicamentos para pacientes, com vistas a minimizar a dor e o sofrimento vivenciado por esses pacientes, além de evitar a tolerância e a sobrecarga do organismo, decorrente do uso excessivo de analgésicos.


Introduction: Pain in children with malignant diseases is related to the disease itself or the diagnostic-therapeutic procedures. Regardless of the cause, the child must have its pain adequately treated. It is believed that adequate pain control occurs in 70% to 90% of the cases, when specific therapies for each patient are employed, including the combination of analgesics and non-pharmacological interventions. Objective: To identify the current non-pharmacological methods for pain management in pediatric oncology in the specialized literature. Method: Integrative literature review, with articles selected between 2008 and 2018 in the Virtual Health Library (VHL), PubMed, Web of Science, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. 11 articles selected according to the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) were fully analyzed Results: Three categories summarized the main findings: pain in pediatric oncology and the assessment instruments, benefits of complementary therapies for the management of pediatric cancer pain, and adverse effects of complementary therapies. Conclusion: Considering pain as a debilitating symptom for the pediatric population undergoing cancer treatment, evaluations made by health professionals must be trustworthy to its characteristics for proper management. Pain management is not limited to pharmacological therapies, some interventions proposed can complement the action of medications to minimize the pain and suffering experienced by these patients, in addition to avoiding the body's tolerance and overload, due to the excessive use of painkillers.


Introducción: El dolor en niños con enfermedades malignas está relacionado con la enfermedad o con los procedimientos de diagnóstico y terapéuticos. Independientemente de la causa, el niño debe tener su dolor adecuadamente tratada. El control adecuado del dolor ocurre en 70% a 90% de los casos, cuando se emplean terapias específicas, incluida la combinación de analgésicos e intervenciones no farmacológicas. Objetivo:Identificar los métodos no farmacológicos actuales para el manejo del dolor en oncología pediátrica en la literatura especializada. Método: Revisión integral de la literatura, con artículos seleccionados entre los años 2008 y 2018, en las bases de datos de la Biblioteca Virtual en Salud (BVS), PubMed, Web of Science e Índice Acumulativo de Literatura de Enfermería y Salud Aliada (CINAHL). Se analizaron 11 artículos selecionados según las recomendaciones del Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Resultados: Tres categorías resumieron los principales hallazgos de los estudios seleccionados: dolor en oncología pediátrica y instrumentos de evaluación, beneficios de las terapias complementarias para el tratamiento del dolor pediátrico por cáncer y los efectos adversos de las terapias complementarias. Conclusión: El dolor és un síntoma debilitante para la población pediátrica sometida a tratamiento oncológico, las evaluaciones realizadas por profesionales de la salud deben ser lo confiables para evaluar sus características para el manejo adecuado. El tratamiento del dolor no se limita a las terapias farmacológicas, algunas intervenciones pueden complementar la acción de los medicamentos, para minimizar el dolor y el sufrimiento experimentado por estos pacientes, además de evitar la tolerancia y la sobrecarga del cuerpo, como resultado del uso excesivo de analgésicos.


Assuntos
Humanos , Masculino , Feminino , Criança , Adolescente , Terapias Complementares , Manejo da Dor , Neoplasias
20.
Eur J Oncol Nurs ; 23: 34-42, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27456373

RESUMO

PURPOSE: To explore and analyze how marital relationships are affected by the crisis generated by the diagnosis and intensive regimens required in the treatment of children with cancer. METHOD: A descriptive study with a qualitative data analysis was conducted. In-depth individual interviews were carried out with 18 married biological parents of children with cancer. Data was analyzed using an inductive content analysis. RESULTS: The following themes represented the couples' experiences: (1) Abrupt changes after the child's diagnosis resulting in marital strain and need to focus on the present; (2) United but distant; (3) Exchanging roles; (4) Being parents all the time; (5) Focusing on the positive side of the experience; (6) Rescuing the marital relationship. The marital relationship of parents with a child/adolescent who has cancer may undergo either positive or negative changes, with intimacy and sexuality being negatively affected by the disease. Although the relationship may be more fragile after the illness, increased mutual commitment was observed in some couples. CONCLUSIONS: Results indicate that health professionals should include parents as an important focus of their care. The establishment of solid bonds to enhance couples' communication is recommended as a way to provide anticipatory guidance to address the identified changes in marital relationships. The opportunities for dialog and partnership help couples to target their needs and recognize their strengths in order to mitigate the impact of a child's illness.


Assuntos
Casamento , Neoplasias , Pais/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Adulto Jovem
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