RESUMO
PURPOSE: This study aimed to analyze the experience of quality of life for urological cancer survivors. METHODS: This is a qualitative narrative research based on the experience-centered approach. Twenty-one semi-structured face-to-face interviews were conducted with 12 survivors of urological cancer at different survival seasons. Participants were recruited from the convenience sampling. The thematic analysis approach was used to analyze the data. The findings are presented as narrative syntheses. The standards for reporting qualitative research (SPQR) were used in this study. RESULTS: Two narrative syntheses were constructed: (1) Rupture in the different dimensions of QoL; and (2) QoL: Searching for a harmonious survival, each presenting their respective sub-themes. After the rupture in the different dimensions of QoL, the survivors resigned themselves and searched for a harmonious survival despite the physical, social, and psychological changes imposed by cancer treatments. Survivors achieved a new meaning of QoL with the support of family, hope, and spirituality. CONCLUSIONS: The results highlight the changes experienced by survivors in different dimensions of QoL and the search for harmonious survival. Based on QoL experience reported in this study, health professionals can plan survival care and interventions that mitigate the consequences of treatment on QoL.
Assuntos
Sobreviventes de Câncer , Neoplasias Urológicas , Sobreviventes de Câncer/psicologia , Humanos , Qualidade de Vida/psicologia , Espiritualidade , Sobreviventes/psicologia , Neoplasias Urológicas/terapiaRESUMO
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.
Assuntos
Amigos , Hospitalização , Adolescente , Criança , Doença Crônica , Hospitais , Humanos , Pesquisa Qualitativa , EspiritualidadeRESUMO
INTRODUCTION: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. OBJECTIVE: This meta-synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. METHODS: A systematic review was performed in six databases, and 14 studies were included in this meta-synthesis. RESULTS: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end-of-life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. CONCLUSION: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi-professional psychosocial care.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Idoso , Cuidadores , Humanos , Neoplasias/terapia , Cuidados Paliativos , EspiritualidadeRESUMO
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.
Assuntos
Terapias Espirituais , Espiritualidade , Feminino , Humanos , Pais , Gravidez , Religião , NatimortoRESUMO
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.
Assuntos
Neoplasias , Terapias Espirituais , Adolescente , Criança , Comunicação , Humanos , Pesquisa Qualitativa , EspiritualidadeRESUMO
OBJECTIVE: To evaluate evidence from randomised controlled trials and non-randomised controlled trials on the effectiveness of hospital clowns for a range of symptom clusters in children and adolescents admitted to hospital with acute and chronic conditions. DESIGN: Systematic review of randomised and non-randomised controlled trials. DATA SOURCES: Medline, ISI of Knowledge, Cochrane Central Register of Controlled Trials, Science Direct, Scopus, American Psychological Association PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Latin American and Caribbean Health Sciences Literature. STUDY SELECTION: Randomised and non-randomised controlled trials were peer reviewed using the following eligibility criteria: children and adolescents who were admitted to hospital for acute conditions or chronic disorders, studies comparing use of hospital clowns with standard care, and studies evaluating the effect of hospital clowns on symptom management of inpatient children and adolescents as a primary outcome. DATA EXTRACTION AND SYNTHESIS: Two investigators independently screened studies, extracted data, and appraised the risk of bias. Methodological appraisal was assessed by two investigators independently using the Jadad scale, the revised Cochrane risk-of-bias tool for randomised controlled trials (RoB 2), and the risk of bias in non-randomised studies (ROBINS-I) tool for non-randomised controlled trials. RESULTS: 24 studies (n=1612) met the inclusion criteria for data extraction and analysis. Most studies were randomised controlled trials (n=13). Anxiety was the most frequently analysed symptom (n=13), followed by pain (n=9), psychological and emotional responses and perceived wellbeing (n=4), stress (n=4), cancer related fatigue (n=3), and crying (n=2). Five studies used biomarkers, mainly cortisol, to assess stress or fatigue outcome following hospital clowns. Most of the randomised controlled trials (n=11; 85%) were rated as showing some concerns, and two trials were rated with a high risk of bias. Most non-randomised controlled trials (n=6; 55%) were rated with a moderate risk of bias according to ROBINS-I tool. Studies showed that children and adolescents who were in the presence of hospital clowns, either with or without a parent present, reported significantly less anxiety during a range of medical procedures, as well as improved psychological adjustment (P<0.05). Three studies that evaluated chronic conditions showed favourable results for the intervention of hospital clowns with significant reduction in stress, fatigue, pain, and distress (P<0.05). CONCLUSIONS: These findings suggest that the presence of hospital clowns during medical procedures, induction of anaesthesia in the preoperative room, and as part of routine care for chronic conditions might be a beneficial strategy to manage some symptom clusters. Furthermore, hospital clowns might help improve psychological wellbeing in admitted children and adolescents with acute and chronic disorders, compared with those who received only standard care. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018107099.
Assuntos
Criança Hospitalizada/psicologia , Terapia do Riso/métodos , Doença Aguda/psicologia , Ansiedade/psicologia , Ansiedade/terapia , Criança , Doença Crônica/psicologia , Fadiga/psicologia , Fadiga/terapia , Humanos , Ensaios Clínicos Controlados não Aleatórios como Assunto , Manejo da Dor/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/psicologia , Estresse Psicológico/terapiaRESUMO
Resumo Objetivo Identificar estudos na literatura nacional e internacional sobre a eficácia das intervenções não farmacológicas para melhoria da qualidade de vida de crianças e adolescentes com câncer. Métodos Revisão integrativa, cuja busca ocorreu nos meses de setembro e outubro de 2018, nas bases de dados PsycINFO, Web of Science, CINAHL, LILACS, IBECS, BDENF e MEDLINE® para responder à questão norteadora: "Quais são as intervenções não farmacológicas disponíveis na literatura e utilizadas para melhorar a qualidade de vida de crianças e adolescentes com câncer?". Foram incluídos artigos originais, publicados entre 2013 e 2018, nos idiomas inglês, português ou espanhol. Excluíram-se estudos que focavam outras temáticas, população adulta, artigos de revisão, dissertações e teses. Resultados A amostra foi constituída por 22 artigos, que foram agrupados, conforme suas similaridades, em três categorias. As intervenções utilizadas foram: atividade física exclusiva (6); atividade física conciliada à outra intervenção (8); e intervenções psicológicas (8). Destas intervenções, 13 apresentaram diferenças significativas na melhoria da qualidade de vida. Conclusão As intervenções não farmacológicas utilizando exercício físico exclusivo ou conciliado a outra intervenção foram as mais eficazes. Esta revisão auxilia na sensibilização dos profissionais sobre a importância da temática e fornece subsídios para o planejamento de ações estratégicas, no âmbito da enfermagem pediátrica, que incluam intervenções não farmacológicas, conciliadas ao tratamento padrão, para a melhoria da qualidade de vida de crianças e adolescentes com câncer. Os resultados devem ser avaliados com cautela, pois identificou-se uma diversidade de intervenções, protocolos e número de participantes - o que dificulta a generalização dos achados.
Resumen Objetivo Identificar estudios en la literatura nacional e internacional sobre la eficacia de las intervenciones no farmacológicas en la mejora de la calidad de vida de niños y adolescentes con cáncer. Métodos Revisión integradora, cuya búsqueda ocurrió en los meses de septiembre y octubre de 2018, en las bases de datos PsycINFO, Web of Science, CINAHL, LILACS, IBECS, BDENF y MEDLINE® para responder la pregunta orientadora: "¿Cuáles son las intervenciones no farmacológicas disponibles en la literatura y utilizadas para mejorar la calidad de vida de niños y adolescentes con cáncer?". Se incluyeron artículos originales publicados entre 2013 y 2018 en los idiomas inglés, portugués y español. Se excluyeron estudios que se centraban en otras temáticas, como población adulta, artículos de revisión, tesis de maestría y doctorado. Resultados La muestra fue formada por 22 artículos, que fueron agrupados en tres categorías según sus similitudes. Las intervenciones utilizadas fueron: actividad física exclusiva (6), actividad física conciliada con otra intervención (8) e intervenciones psicológicas (8). De estas intervenciones, 13 presentaron diferencias significativas en la mejora de la calidad de vida. Conclusión Las intervenciones no farmacológicas utilizando ejercicio físico exclusivo o conciliado con otra intervención fueron las más eficaces. Esta revisión ayuda a sensibilizar a los profesionales sobre la importancia de esta temática y contribuye a la planificación de acciones estratégicas en el ámbito de la enfermería pediátrica, que incluyan intervenciones no farmacológicas, conciliadas con el tratamiento estándar, para la mejora de la calidad de vida de niños y adolescentes con cáncer. Los resultados deben analizarse con cautela, ya que se identificó una diversidad de intervenciones, protocolos y número de participantes, lo que dificulta la generalización de los descubrimientos.
Abstract Objective To identify, in both the Brazilian and international literature, studies about the efficacy of nonpharmacological interventions oriented toward improving quality of life in children and adolescents with cancer. Methods Integrative review whose search process was carried out in September and October 2018 in the following databases: PsycINFO, Web of Science, Cumulative Index to Nursing and Allied Health Literature, Latin America and Caribbean Center on Health Sciences Information, Índice Bibliográfico Español de Ciencias de la Salud, Banco de Dados em Enfermagem, and MEDLINE®. The guiding question was "What are the nonpharmacological interventions available in the literature used to improve quality of life in children and adolescents with cancer?". Original articles published between 2013 and 2018 in English, Portuguese, or Spanish were included. Studies that focused on other subjects or adult population and review articles, dissertations, and theses were excluded. Results The sample was 22 articles, which were grouped, according to their similarities, into three categories. The described interventions consisted of: exclusive physical activity (6); physical activity combined with another intervention (8); and psychological interventions (8). Among these interventions, 13 showed significant differences in the improvement of quality of life. Conclusion The nonpharmacological interventions that applied physical exercise or were combined with another intervention were the most effective. The present review helps raising awareness of professionals of the importance of the subject and provides resources to plan strategical actions, in the context of pediatric nursing, that include nonpharmacological interventions, together with the standard treatment, to improve quality of life in children and adolescents with cancer. The results must be evaluated with caution, given that a variety of interventions, protocols, and number of participants was identified in the sample, which hinders the generalization of the findings.
Assuntos
Humanos , Criança , Adolescente , Qualidade de Vida , Terapias Complementares , Neoplasias , Enfermagem Pediátrica , Yoga , Exercício Físico , Educação em Saúde , Psico-OncologiaRESUMO
Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait-multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.
Assuntos
Doença Crônica/psicologia , Psicometria/estatística & dados numéricos , Qualidade de Vida/psicologia , Religião e Medicina , Espiritualidade , Inquéritos e Questionários/normas , Adolescente , Brasil , Criança , Doença Crônica/etnologia , Feminino , Nível de Saúde , Humanos , Masculino , Pais , Procurador , Reprodutibilidade dos Testes , Autorrelato , TraduçãoRESUMO
INTRODUCTION: Clown intervention may playing an important complementary role in paediatric care and recovery. However, data on its utility for symptom cluster management of hospitalised children and adolescents in acute and chronic disorders are yet to be critically evaluated. As clinicians strive to minimise the psychological burden during hospitalisation, it is important that they are aware of the scientific evidences available regarding clown intervention for symptom management. We aim to provide quality evidence for the effectiveness of clown intervention on symptom cluster management in paediatric inpatients, both in acute and chronic conditions. METHODS AND ANALYSIS: A systematic review of randomised controlled trials (RCTs) and non-randomised controlled trials (NRCTs) will be conducted. MEDLINE, Web of Science, Cochrane Library, Science Direct, PsycINFO, CINAHL, LILACS and SciELO databases will be searched from January 2000 to December 2018. Primary outcomes will include measures related with the effect of clown intervention on symptom cluster of paediatric inpatients (anxiety, depression, pain, fatigue, stress and psychological, emotional responses and perceived well-being). Study selection will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, and the methodological appraisal of the studies will be assessed by the Jadad Scale as well as Cochrane Risk-of-Bias Tool for RCTs, and Risk-of-Bias In Non-Randomized Studies Tool for NRCTs. A narrative synthesis will be conducted for all included studies. Also, if sufficient data are available, a meta-analysis will be conducted. The effect sizes will be generated using Hedges' g score for both fixed and random effect models. I 2 statistics will be used to assess heterogeneity and identify their potential sources. ETHICS AND DISSEMINATION: As it will be a systematic review, without human beings involvement, there will be no requirement for ethical approval. Findings will be disseminated widely through peer-reviewed publication and in various media, for example, conferences, congresses or symposia. TRIAL REGISTRATION NUMBER: CRD42018107099.
Assuntos
Ansiedade/prevenção & controle , Terapia do Riso , Pediatria , Estresse Psicológico/terapia , Doença Aguda/psicologia , Doença Crônica/psicologia , Hospitalização , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Projetos de Pesquisa , Revisões Sistemáticas como AssuntoRESUMO
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 , MasculinoRESUMO
BACKGROUND: The school is an essential context for children's social interaction with peers and to develop academic skills. Therefore, a fast reintegration can help children with burns to normalize their life. Thus, school reintegration is an important outcome after burns. The aim of this review was to systematically synthesize the literature addressing school reintegration programs of pediatric burns survivors. METHODS: Five electronic databases were searched independently by two reviewers. The search yielded 13 eligible publications. A qualitative content analysis was conducted. RESULTS: The two themes identified centered around (1) the roles, obstacles, and support for the different stakeholders (i.e., the child, parents and teacher) and (2) the contents of the school reintegration programs in which subthemes such as purpose, planning, essential elements, team, and effect were distinguished. The results show that return to school should start as soon as the child is admitted to the hospital and the program should acknowledge the different stakeholders' needs and tailor the program to these needs. CONCLUSION: The review emphasizes the necessity of an integrated school reintegration program empowering both the child, the parents and the teachers and tailored to the child's specific situation. Furthermore, it offers recommendations for further improvement of the field.
Assuntos
Queimaduras , Relações Interpessoais , Instituições Acadêmicas , Sobreviventes , Criança , Humanos , Pais , Grupo Associado , Papel (figurativo) , Professores EscolaresRESUMO
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/métodosRESUMO
Objetivou-se identificar e analisar as estratégias lúdicas utilizadas na reabilitação de desordens motoras em crianças com paralisia cerebral. Trata-se de uma revisão integrativa da literatura, conduzida por dois revisores independentes, nas bases de dados LILACS, EMBASE, Web of Science, CINAHL e PubMed. As buscas abrangeram o período de 2006 a 2017 e os idiomas português, inglês e espanhol. A estratégia de busca contemplou várias palavras-chaves, utilizando-se a abordagem PICO. Foram incluídos 20 artigos e os resultados mostraram-se satisfatórios na utilização de estratégias lúdicas, com foco na motricidade fina, motricidade grossa, equilíbrio e marcha das crianças com paralisia cerebral. Os videogames e os jogos de computador foram as estratégias mais utilizadas. Conclui-se que a incorporação do lúdico no tratamento de crianças com paralisia cerebral, desde que utilizado de maneira adequada, é importante para subsidiar a melhora das habilidades motoras e favorecer a relação terapeuta/paciente, tornando o tratamento mais dinâmico e eficaz.
The objective of this study was to identify and analyze play therapy strategies used in the rehabilitation of motor disorders in children with cerebral palsy. This is an integrative review of the literature, conducted by two independent reviewers, in the following databases: LILACS, Embase, Web of Science, CINAHL and PubMed databases. The searches covered the period from 2006 to 2017 and the Portuguese, English and Spanish languages. The search strategy included several keywords, using the PICO approach. Twenty articles were included that achieved satisfactory results for the use of ludic strategies, focusing on the fine motor skills, gross motor skills, balance and gait of children with cerebral palsy. Video games and computer games were the most commonly used strategies. It is concluded that the incorporation of ludic activities in the treatment of children with cerebral palsy, when properly used, is important in fostering the improvement of motor skills and favoring the therapist/patient relationship, making treatment more dynamic and effective.
Assuntos
Humanos , Masculino , Feminino , Criança , Jogos e Brinquedos , Paralisia Cerebral/reabilitação , Ludoterapia , Ludoterapia/métodosRESUMO
The purpose of this article was to present discussions on how pediatric nurses can perform spiritual care to children and adolescents and discuss the challenges of integrating such care in health-care settings. Based on the literature, the article presents an overview of spiritual care in pediatric settings highlighting the assessment of spirituality, expected outcomes, and the corresponding nursing interventions. Spiritual care provided to children and adolescents should take into account all aspects of the developmental stage, life experiences, and familiar and sociocultural contexts. Different approaches can be used to perform spiritual care. However, lack of knowledge and time are highlighted as the main challenges in integrating spiritual care into the clinical practice. Spiritual care is crucial to the well-being of children and adolescents in times of illness and hospitalization when the goal is to provide holistic care.
Assuntos
Relações Enfermeiro-Paciente , Avaliação em Enfermagem/métodos , Enfermagem Pediátrica/organização & administração , Espiritualidade , Adolescente , Criança , Humanos , Inquéritos e QuestionáriosRESUMO
PURPOSE: The study examined the different dimensions of fatigue (general, sleep/rest, cognitive), health related quality of life (HRQL) (physical, emotional, cognitive, social), and the relationships between fatigue and HRQL in hospitalized children and adolescents with cancer in Brazil. METHOD: Participants were recruited from a pediatric oncology inpatient unit in a comprehensive cancer care hospital in southeast Brazil. They completed the PedsQL Multidimensional Fatigue Scale and the PedsQL Inventory of Quality of Life (Generic and Cancer module) once during hospitalization. RESULTS: The majority (66.7%) of the participants (n = 38; mean age 12.1 ± 2.9 years) had total fatigue scores < 75 on 0 to 100 scale; with the mean total fatigue score of 63.8 ± 18.5. The majority (72.2% generic; 83.3% cancer modules) had total PedsQL scores < 75 on 0 to 100 scale. The mean PedsQL score on generic module (61.1 ± 17.0) was similar to the mean PedsQL score cancer module (59.1 ± 16.7). Significant correlations were found between total fatigue and quality of life generic (r = 0.63, p = 0.000) and cancer module (r = 0.74, p = 0.000). CONCLUSIONS: The study is the first to report fatigue and health related quality of life in hospitalized children and adolescents with cancer in Brazil. Similar to experiences of other children in the world, our findings indicate that children and adolescents with cancer had problems with fatigue that were associated with low HRQL. Future studies are recommended to examine interventions (exercise, leisurely activities) that may alleviate fatigue and improve HRQL in pediatric patients with cancer.
Assuntos
Adaptação Psicológica , Comportamento do Adolescente/psicologia , Comportamento Infantil/psicologia , Fadiga/psicologia , Pacientes Internados/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Adolescente , Brasil , Criança , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
Objetivo: reunir evidências disponíveis na literatura a respeito das informações aos pais de crianças com câncer e as intervenções educativas do enfermeiro. Método: revisão integrativa que objetivou responder a questão norteadora << Quais as evidências científicas acerca das informações aos pais de crianças com câncer e as ações educativas do enfermeiro? >> com buscas nas bases de dados: MEDLINE, LILACS e CINAHL. As buscas utilizaram como descritores (DeCS / MeSH): câncer; criança; pais; educação, no período de 2000 a 2014. A amostra final da revisão foi composta por 20 artigos. Resultados: a análise dos estudos selecionados é apresentada em quatro categorias: Caracterização das informações oferecidas aos pais e mães; Cuidados especiais e recomendações para a transmissão de informações aos pais; Dificuldades identificadas pelos pais na obtenção das informações; Estratégias para as ações educativas realizadas pelo enfermeiro. Conclusões: o acesso às informações necessárias a esses pais é um elemento essencial para o planejamento adequado de intervenções educativas de acordo com aquilo de que realmente eles precisam para exercer seu papel de cuidador com maior segurança e confiança.(AU)
Objective: to search for available evidence in the literature about the information needs of parents in pediatric oncology and their relation with nurses' educational interventions. Method: integrative review that aimed to answer the guiding question << What are the scientific evidences about the information to parents of children with cancer and nurses' educational practices? >> with searches in MEDLINE, LILACS e CINAHL. Searches used as descriptors (DeCS / MeSH): neoplasms; child; parents; education, between the years 2000 to 2014. The final sample was composed of 20 articles. Results: the analysis of the selected studies is presented in four categories: Characterization of the information provided to parents; Special care and recommendations for information transmission to parents; Difficulties identified by parents to obtain information; Strategies for educational activities performed by nurses. Conclusions: access to the information necessary for these parents is an essential element for the proper planning of educational interventions according to parents' real needs to play their role as caregivers with greater security and confidence.(AU)
Objetivo: reunir evidencia disponible en la literatura acerca de la necesidad de información de padres de niños con cáncer y las intervenciones del enfermero. Método: revisión integradora destinada a responder a la pregunta guía << ¿Cuáles son las evidencias científicas acerca de la información a los padres de niños con cáncer y acciones educativas del enfermero? >> con búsquedas en las bases de datos : MEDLINE, LILACS y CINAHL. Las búsquedas se utilizan como descriptores (DeCS / MeSH): cáncer; niños; padres; educación; enfermería, entre los años 2000-2014. La muestra final de la revisión consistió en 20 artículos. Resultados: el análisis se presenta en cuatro categorías: Caracterización de la información proporcionada a los padres; Cuidado y recomendaciones para la transmisión de información a los padres; Las dificultades identificadas en la obtención de la información; Estrategias para las actividades educativas de los enfermeros. Conclusiones: el acceso a la información para estos padres es un elemento esencial para la planificación adecuada de las intervenciones educativas de acuerdo con lo que los padres necesitan para llevar a cabo su papel de cuidador con mayor seguridad y confianza.(AU)
Assuntos
Pais , Criança , Saúde da Criança , Educação em Saúde , Comunicação em Saúde , Neoplasias , Enfermeiras e Enfermeiros , MEDLINE , LILACSRESUMO
Ao considerar a integralidade do cuidado, é necessário que os enfermeiros sistematizem o cuidado espiritual e proponham intervenções nessa dimensão aos seus pacientes. Objetivo: analisar a compreensão do enfermeiro acerca do cuidado espiritual e a sua experiência na promoção desse cuidado aos pacientes na prática clínica. Método: pesquisa descritiva, com análise qualitativa dos dados, desenvolvida com 17 enfermeiros. A coleta de dados foi realizada por meio de entrevistas semiestruturadas, as quais foram analisadas mediante análise de conteúdo qualitativa. Resultados: os enfermeiros identificaram a necessidade de intervenção na dimensão espiritual dos seus pacientes e consideraram importante atender a essa necessidade, porém eles apresentaram dificuldades em oferecer esse cuidado. Falta de conhecimento e organização do processo de trabalho foram dificuldades citadas para a não realização do cuidado espiritual e para a priorização dos cuidados físicos. Aponta-se, ainda, que o cuidado espiritual, quando oferecido, não foi sistematizado. Conclusão: esta pesquisa apresenta potencial para suscitar discussões quanto à formação do enfermeiro para o oferecimento do cuidado espiritual, além de demonstrar suas dificuldades e facilidades para a prestação de tal cuidado no cotidiano do trabalho da enfermagem.
When looking at comprehensive care, nurses need to systematize spiritual care and propose these kinds of interventions for their patients. Objective: Analyze nurses' understanding of spiritual care and their experience in encouraging this type of attention for patients in clinical practice. Method: This is a descriptive study featuring a qualitative analysis of data. The sample included 17 nurses. The data were collected through semi-structured interviews and examined via qualitative content analysis. Results: The nurses who participated in the study indicated there is a need for intervention to attend to the spiritual needs of patients and felt it is important to address this dimension of health care. However, they have difficulty in providing spiritual care. Lack of know-how and the way their work is organized were cited as obstacles to providing spiritual care, as was the priority on physical care. The nurses in the sample also noted that spiritual care, when offered, is not systematized. Conclusion: The research in question has the potential to encourage discussion on how nurses can be trained to offer spiritual care. It also demonstrates the difficulties they encounter and the kind of facilities or conditions they require to provide spiritual care in everyday nursing practice.
Al considerar la integralidad del cuidado, es necesario que los enfermeros sistematicen el cuidado espiritual y propongan intervenciones en esta dimensión a sus pacientes. Objetivo: analizar la comprensión del enfermero acerca del cuidado espiritual y su experiencia en la promoción de este cuidado a los pacientes en la práctica clínica. Método: investigación descriptiva, con análisis cualitativo de los datos, desarrollada con 17 enfermeros. Se recolectaron los datos por medio de entrevistas semiestructuradas, analizadas mediante análisis de contenido cualitativo. Resultados: los enfermeros identificaron la necesidad de intervención en la dimensión espiritual de sus pacientes y consideraron importante atender a esta necesidad; sin embargo, ellos presentaron dificultades en brindar este cuidado. Falta de conocimiento y organización del proceso de trabajo fueron dificultades citadas para la no realización del cuidado espiritual y la priorización de los cuidados físicos. Se señala, aun, que el cuidado espiritual, cuando fue ofrecido, no fue sistematizado. Conclusión: esta investigación presenta potencial para despertar discusiones en cuanto a la formación del enfermero para el ofrecimiento del cuidado espiritual, además demuestra sus dificultades y facilidades para la ejecución de tal cuidado en la cotidianidad del trabajo de enfermería.
Assuntos
Humanos , Enfermagem , Terapias Espirituais , Espiritualidade , ReligiãoRESUMO
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-SujeitoRESUMO
This study analyzed scientific production on the measurement of fatigue in children and adolescents with cancer, particularly the instruments used. Integrative review, searching in PubMed, PsycINFO, Web of Science, CINAHL, LILACS, SciELO, IBECS and COCHRANE, without any time restriction, using key words and descriptors in different combinations. The review sample comprised 21 references. The results composed two categories: instrument development and validation and fatigue measurement. American nurses developed most studies, between 2002 and 2011, using two scales. The studies assessed the children and adolescents' self-reports and the parents' reports. They also associated fatigue with sleep pattern, quality of life, depression, survival and dexamethasone use. The importance of research on this theme is evidenced, including studies that apply these instruments in practice. The gap in knowledge production on this theme is highlighted in the Brazilian context.
El estudio analizó la producción científica sobre medición de fatiga en niños y adolescentes con cáncer, con destaque en los instrumentos que fueron utilizados. Revisión integrativa, con búsqueda en las bases de datos PubMed, PsycINFO, Web of Science, CINAHL, LILACS, SciELO, IBECS y COCHRANE, sin restricción de período, utilizándose palabras-clave y descriptores, en varias combinaciones. La muestra incluyó 21 referencias. Los resultados compusieron dos categorías: Desarrollo y validación de instrumentos y Medición de la fatiga. La mayoría de los estudios fue desarrollada por enfermeros americanos, entre 2002 y 2011, utilizándose dos escalas. Los estudios evaluaron los auto-relatos de los niños y adolescentes y los relatos de los padres. También asociaron la fatiga con patrón de sueño, calidad de vida, depresión, sobrevida y uso de dexametasona. Se evidencia la importancia de estudios sobre esa temática, incluyendo la aplicación práctica de esos instrumentos. Se destaca el vacío en la producción de conocimiento en este tema en el contexto brasileño.
O estudo analisou a produção científica relativa à mensuração de fadiga em crianças e adolescentes com câncer, com destaque aos instrumentos utilizados. Revisão integrativa, com busca no PubMed, PsycINFO, Web of Science, CINHAL, LILACS, SciELO, IBECS e COCHRANE, sem restrição de período, utilizando-se palavras-chave e descritores, em várias combinações. A amostra de revisão foi constituída de 21 referências. Os resultados compuseram duas categorias: desenvolvimento e validação de instrumentos e mensuração da fadiga. A maioria dos estudos foi desenvolvida por enfermeiros americanos, entre 2002 e 2011, utilizando-se duas escalas. Os estudos avaliaram os autorrelatos das crianças e adolescentes e relato dos pais. Eles também associaram a fadiga ao padrão de sono, qualidade de vida, depressão, sobrevida e uso de dexametasona. Evidencia-se a importância do desenvolvimento de estudos nessa temática, incluindo aqueles com aplicação desses instrumentos na prática. Salienta-se a lacuna na produção de conhecimento neste tema no contexto brasileiro.
Assuntos
Humanos , Criança , Adolescente , Enfermagem Pediátrica , Criança , Adolescente , Fadiga , NeoplasiasRESUMO
Children are the best sources of information on their experiences and opinions, and qualitative studies have favored the development and application of techniques that facilitate their self-expression and approaching the researcher. Through an integrative literature review, the objective of this research was to identify playful resources used in qualitative research data collection with child cancer patients, and their forms of application. Systemized searches of electronic databases and a virtual library were undertaken, which, combined with a non-systemized sample, totaled 15 studies spanning the period from 2000 and 2010. Drawing, toys, puppets, photography and creativity and sensitivity dynamics were identified which, in association with interviews or not, were shown to directly or indirectly facilitate data collection, thereby broadening the interaction with the children, and permitting further expression of their feelings. The advantages and limitations of using these resources are presented thus contributing to planning research with children.