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2.
Eur J Oncol Nurs ; 44: 101692, 2019 Nov 11.
Artigo em Inglês | MEDLINE | ID: mdl-31751850

RESUMO

PURPOSE: Most qualitative studies do not explore experience throughout the urologic cancer survival trajectory. Moreover, the evidence of the experience of cancer survivors that focuses on the contextual aspects of culture is scarce in oncology literature. This study aimed to analyze the survival experience of urological cancer from the perspective of men. METHOD: This was a narrative research based on the concepts of culture derived from the interpretative medical anthropologic approach. Semi-structured interviews were conducted with 10 male survivors of urological cancer at different survival seasons. Seven participants agreed to a second interview, which resulted in 17 interviews. The data were analyzed using a five-phase thematic analysis approach. The findings are presented as narrative syntheses. The standards for reporting qualitative research (SPQR) was used in this study. RESULTS: Two narrative syntheses were constructed: "The journey of urological cancer: discovering oneself as a survivor" and "What I was and what I am today": the disruption on the body and life. The narrative synthesis shows that survivors undergo transitions of identity from being healthy men to wrecked men. The survivors tried to present themselves as normal men to keep their masculinity intact. However, the experience of survival constituted a process of liminality and biographical disruption. CONCLUSION: The experience of surviving urological cancer has highlighted the physical, emotional, and social challenges experienced by these male survivors. It is recommended to oncology nurses that nursing care should be planned along survival seasons considering the survivors' individual and subjective experiences.

3.
Rev Esc Enferm USP ; 53: e03494, 2019.
Artigo em Português, Inglês | MEDLINE | ID: mdl-31618311

RESUMO

OBJECTIVE: To interpret the meaning attributed to men's experience regarding their body during the development of prostate cancer. METHOD: Ethnographic study carried out with men and guided by the narrative method and the theoretical frameworks of medical anthropology and the anthropology of masculinities. Information was obtained through recorded interviews, direct observation, and logs from a field journal, which were examined using inductive thematic analysis. RESULTS: Seventeen men participated in the study. During the process of falling ill with prostate cancer, the male bodies were ruled by moral experiences that influenced the way men conducted their relationship with their health and multifaceted masculinity, standing for hegemonic cultural principles and identity affirmation moral dilemmas, which were interpreted with the meaning of embodiment. CONCLUSION: During the development of the disease, men experience bodily, social, and moral dilemmas that threaten the hegemonic masculinity. Understanding them can help professionals deal with this population.

4.
Rev. bras. enferm ; 72(5): 1153-1160, Sep.-Oct. 2019.
Artigo em Inglês | LILACS-Express | ID: biblio-1042121

RESUMO

ABSTRACT Objective: To explore factors that interact and shape the meaning and experience of mothers of HIV-exposed children in relation to replacing breastfeeding by infant formula. Method: A qualitative study was carried out with 23 mothers living with HIV, whose children were up to 18 months of age and under follow-up in a specialized care service. Symbolic Interactionism, semi-structured interviews and content analysis were adopted as theoretical framework. Results: The social symbols of breastfeeding, the (un)availability of the milk formula and the (lack of)support of health professionals influenced the mothers' experience with formula feeding. Social, cultural and economic constraints have proved capable of undermining the conditions necessary for the replacement of breastfeeding. Final considerations: The availability of infant formula, access to lactation inhibitor and quality of health services still represent challenges to eradicate new HIV infections in children.


RESUMEN Objetivo: Explorar los factores que interactúan y moldean el significado y la experiencia de madres de niños expuestos al VIH en relación a la sustitución de la lactancia por una fórmula láctea infantil. Método: Estudio cualitativo, con 23 madres viviendo con VIH, cuyos hijos tenían hasta 18 meses de edad y estaban bajo seguimiento en servicio de asistencia especializada. Se adoptaron el Interaccionismo Simbólico como referencial teórico, entrevistas semiestructuradas y el análisis de contenido. Resultados: Los símbolos sociales de la lactancia, la (in) disponibilidad de la fórmula láctea y el (des) apoyo de los profesionales de la salud influenciaron a la experiencia de las madres con la alimentación por una fórmula láctea. Los cercos sociales, culturales y económicos se mostraron capaces de perjudicar las condiciones necesarias para la sustitución de la lactancia materna. Consideraciones finales: La disponibilidad de la fórmula láctea infantil, el acceso al inhibidor de la lactancia y la calidad de los servicios de salud todavía representan desafíos para eliminar nuevas infecciones por el VIH en niños.


RESUMO Objetivo: Explorar os fatores que interagem e moldam o significado e a experiência de mães de crianças expostas ao HIV em relação à substituição do aleitamento por fórmula láctea infantil. Método: Estudo qualitativo, com 23 mães vivendo com HIV, cujos filhos tinham até 18 meses de idade e estavam sob acompanhamento em serviço de assistência especializado. Foram adotados o Interacionismo Simbólico como referencial teórico, entrevistas semiestruturadas e análise de conteúdo. Resultados: Os símbolos sociais da amamentação, a (in)disponibilidade da fórmula láctea e o (des)apoio dos profissionais de saúde influenciaram a experiência das mães com a alimentação por fórmula láctea. Cerceamentos sociais, culturais e econômicos mostraram-se capazes de prejudicar as condições necessárias para a substituição do aleitamento materno. Considerações finais: A disponibilidade da fórmula láctea infantil, o acesso ao inibidor de lactação e a qualidade dos serviços de saúde ainda representam desafios para eliminar novas infecções pelo HIV em crianças.

5.
Rev Bras Enferm ; 72(5): 1153-1160, 2019 Sep 16.
Artigo em Inglês, Português | MEDLINE | ID: mdl-31531635

RESUMO

OBJECTIVE: To explore factors that interact and shape the meaning and experience of mothers of HIV-exposed children in relation to replacing breastfeeding by infant formula. METHOD: A qualitative study was carried out with 23 mothers living with HIV, whose children were up to 18 months of age and under follow-up in a specialized care service. Symbolic Interactionism, semi-structured interviews and content analysis were adopted as theoretical framework. RESULTS: The social symbols of breastfeeding, the (un)availability of the milk formula and the (lack of)support of health professionals influenced the mothers' experience with formula feeding. Social, cultural and economic constraints have proved capable of undermining the conditions necessary for the replacement of breastfeeding. FINAL CONSIDERATIONS: The availability of infant formula, access to lactation inhibitor and quality of health services still represent challenges to eradicate new HIV infections in children.

6.
Death Stud ; : 1-17, 2019 Aug 12.
Artigo em Inglês | MEDLINE | ID: mdl-31403372

RESUMO

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.

7.
J Relig Health ; 58(6): 2219-2240, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31446605

RESUMO

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.

8.
J Adv Nurs ; 75(12): 3246-3262, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31236968

RESUMO

AIM: To synthesize qualitative studies on the experience of hope in families of children and adolescents living with chronic illness. BACKGROUND: Hope is multidimensional, dynamic, and varies according to experienced events, cultural environments and stage of life. The qualitative synthesis of the experience of hope in the paediatric population with chronic conditions is scarce. DESIGN: Thematic synthesis of qualitative studies. DATA SOURCES: A systematic literature search in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science was performed supplemented by manual search strategies. Thirty-one studies from fifteen countries, published between 1981-2018, were included. FINDINGS: Findings were integrated into an analytical theme "FAMILY HOPE: KEEPING THE DAY-TO-DAY BALANCE", encompassing the following five descriptive themes: Uncertainty; Support; Information; Between "dark thoughts" and positive thoughts; and Hoping to go back to normality. CONCLUSION: This thematic synthesis brings a new dimension of hope among families of children and adolescents living with chronic illness. "Family Hope" highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope. It is recommended that health professionals use a family-focused approach to support these families. IMPACT: Shifting the focus to a family dimension of hope is a promising pursuit that has the potential to inform future nursing practices to support the experiences of families living with chronic illness in the paediatric context. A better understanding of the role and characteristics of family hope will promote the development of more effective interventions for families to adapt to long-term paediatric conditions.

9.
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
10.
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.

11.
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.

12.
BMJ Open ; 9(4): e025833, 2019 04 25.
Artigo em Inglês | MEDLINE | ID: mdl-31028040

RESUMO

OBJECTIVE: This study determined the prevalence and factors associated with sexual dysfunction in breastfeeding women. DESIGN: Cross-sectional analytical study. SETTING: Population-based study of individuals living in the northeast region of São Paulo state, Brazil. PARTICIPANTS: From May to August 2017, 372 women aged ≥18 years were selected who gave exclusive, predominant or complementary breast feeding up to 23 months postpartum, and who did not have contraindications for the resumption of intercourse. Pregnant women, those diagnosed with mental health problems, users of medications that affect sexual function (antihypertensives, antidepressants or antipsychotics) and women unable to read or understand the instructions for the study were excluded. PRIMARY AND SECONDARY OUTCOME MEASURES: The breastfeeding women completed the Female Sexual Function Index, the EUROHIS-QOL 8-item index and a questionnaire to collect participants' sociodemographic, clinical and interpersonal data. A bivariate analysis was performed, and variables with p values<0.20 were analysed by multivariate logistic regression. RESULTS: Sexual dysfunction was present in 58.3% of the study population. Factors significantly associated with female sexual dysfunction (FSD) included placing a low importance on sexual intercourse (adjusted OR [AOR]=2.49, 95% CI=1.22 to 5.09), limited communication with the partner (AOR=2.64, 95% CI=1.43 to 4.86), decreased frequency of sexual intercourse (AOR=2.17, 95% CI=1.30 to 3.61) and low quality of life (AOR=2.23, 95% CI=1.33 to 3.74). CONCLUSIONS: The prevalence of FSD appears with a great magnitude in breastfeeding women. The risk factors for sexual dysfunction are biopsychosocial and these findings may lead to improved counselling for prenatal and postnatal care.

13.
Acta Paul. Enferm. (Online) ; 32(2): 220-228, Mar.-Abr. 2019. tab, graf
Artigo em Português | LILACS-Express | ID: biblio-1001060

RESUMO

Resumo Objetivo: Conhecer a produção científica sobre a utilização e manutenção do cateter central de inserção periférica (CCIP) em crianças e adolescentes em tratamento oncológico. Método: Revisão do tipo Scoping Review, segundo o método adaptado e proposto por Levac, Colquhoun e O'Brien. Foram percorridas cinco etapas: identificação da questão de pesquisa; buscas por estudos relevantes; seleção de estudos; extração dos dados; agrupamento, resumo e apresentação dos resultados. Utilizaram-se as bases de dados PubMed, CINAHL, Scopus, LILACS e Embase. Foram incluídos artigos de revisão da literatura ou originais, de abordagem quantitativa ou qualitativa, que focalizassem o cateter venoso central de inserção periférica em crianças e adolescentes com câncer, em qualquer fase do tratamento oncológico e contexto de cuidado, publicados em português, inglês e espanhol, no período de 2006 a 2017. Resultados: Buscas nas bases de dados capturaram 609 artigos únicos, dos quais nove compuseram a amostra final. Foram elaborados cinco temas principais relacionados à utilização do cateter venoso central de inserção periférica: indicação, técnica de inserção, manutenção do cateter, complicações relacionadas e desfechos do uso. Os resultados permitem sintetizar as recomendações para a utilização deste dispositivo no que se refere, sobretudo, a: terapêutica e tipo de neoplasia, veias de escolhas, tipos de curativos, principais complicações e desfechos. Conclusão: O cateter venoso central de inserção periférica mostra-se uma opção segura e confiável para a terapia endovenosa na população pediátrica oncológica. O presente estudo contribui por tornar clara a indicação de sua utilização para tal população e apontar temas a serem explorados em futuros estudos empíricos.


Resumen Objetivo: Conocer la producción científica sobre la utilización y mantenimiento del catéter central de inserción periférica (CCIP) en niños y adolescentes en tratamiento oncológico. Método: Revisión tipo Scoping Review, según el método adaptado y propuesto por Levac, Colquhoun y O'Brien. Se realizaron cinco etapas: identificación del tema de investigación; búsquedas de estudios relevantes; selección de estudios; extracción de datos; agrupación, resumen y presentación de los resultados. Se utilizaron las bases de datos PubMed, CINAHL, Scopus, LILACS y Embase. Fueron incluidos artículos de revisión bibliográfica u originales, de enfoque cuantitativo o cualitativo, que se centraran en el catéter venoso central de inserción periférica en niños y adolescentes con cáncer, en cualquier etapa del tratamiento oncológico y cualquier contexto de cuidado, publicados en portugués, inglés y español, en el período de 2006 a 2017. Resultados: En las búsquedas en las bases de datos se encontraron 609 artículos únicos, de los cuales nueve formaron parte de la muestra final. Fueron elaborados cinco temas principales relacionados a la utilización del catéter venoso central de inserción periférica: indicación, técnica de inserción, mantenimiento del catéter, complicaciones relacionadas y resultados de uso. Los resultados permiten sintetizar las recomendaciones para la utilización de este dispositivo respecto, sobre todo, a: uso terapéutico y tipo de neoplasia, elección de venas, tipos de vendaje, principales complicaciones y resultados. Conclusión: El catéter venoso central de inserción periférica muestra ser una opción segura y confiable para terapia endovenosa en la población pediátrica oncológica. El presente estudio ayuda a esclarecer la indicación de su utilización para tal población y señala temas que serán analizados en futuros estudios empíricos.


Abstract Objective: To map the scientific production about the use and maintenance of peripherally inserted central catheter (PICC) in children and adolescents undergoing oncology treatment. Methods: Scoping review, according to the method adapted and proposed by Levac, Colquhoun and O'Brien. Five stages were performed: identification of the research question; search for relevant studies; selection of studies; extraction of the data; grouping, summarizing and presenting the results. The databases used were PubMed, CINAHL, Scopus, LILACS and Embase. Literature review articles or original articles were included, with qualitative or quantitative designs, which focused on peripherally inserted central catheters in children and adolescents, in any stage of the oncology treatment and care context, published in Portuguese, English and Spanish, between 2006 and 2017. Results: Searches in the databases returned 609 unique articles, nine of which constituted the final sample. Five main themes were elaborated related to the use of the peripherally inserted central catheter: indication, insertion technique, catheter maintenance, related complications and outcomes of the use. Based on the results, the recommendations for the use of this device can be summarized, mainly related to: the treatment and type of neoplasm, selected veins, dressing types, main complications and outcomes. Conclusion: The peripherally inserted central catheter is a safe and reliable option for intravenous therapy in the pediatric oncology population. This study contributes to evidence the indication of its use for that population and appoints themes for future empirical studies.

14.
Rev Lat Am Enfermagem ; 27: e3090, 2019 Mar 18.
Artigo em Inglês, Português, Espanhol | MEDLINE | ID: mdl-30916223

RESUMO

OBJECTIVE: to present a theoretically based conceptual framework for designing video games for children with type 1 diabetes mellitus. METHODS: this was a methodological study that developed a conceptual framework with nine steps in view of health behavior change theories and the user-centered design approach as theoretical and methodological frameworks, respectively. Twenty-one children, aged 7 to 12 years, participated by expressing their needs and preferences related to diabetes and video games. Data were analysed following content analysis guidelines. Then, a choice of appropriate health behavioral change theories and their determinants that should be capable of influencing children's behaviors and preferences. RESULTS: the conceptual framework proposes a video game that consists of six phases, each addressing one stage of behavioral change and specific determinants, aligned with the needs and preferences identified by the participating children. This study shows the applicability of this framework in view of each proposed phase presenting examples and the children's ideas. CONCLUSION: the results of this study contribute to advance the discussion on how behavioral theories and their determinants should be related to the design of creative and funny video games considering the profile of the target population as well as its needs and preferences.


Assuntos
Diabetes Mellitus Tipo 1/terapia , Comportamentos Relacionados com a Saúde , Educação de Pacientes como Assunto/métodos , Autocuidado/métodos , Jogos de Vídeo , Criança , Feminino , Grupos Focais , Humanos , Masculino , Modelos Teóricos
15.
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.

16.
Eur J Cancer Care (Engl) ; 28(4): e13029, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30828888

RESUMO

PURPOSE: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. METHOD: A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8-18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. RESULTS: Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. CONCLUSIONS: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.


Assuntos
Neoplasias/fisiopatologia , Dor/fisiopatologia , Qualidade de Vida , Sono , Actigrafia , Adolescente , Fatores Etários , Estudos de Casos e Controles , Criança , Feminino , Humanos , Leucemia/fisiopatologia , Linfoma/fisiopatologia , Masculino , Estudos Prospectivos , Sarcoma/fisiopatologia , Fatores Sexuais
17.
Rev Gaucha Enferm ; 40: e20180103, 2019 Feb 18.
Artigo em Português, Inglês | MEDLINE | ID: mdl-30785545

RESUMO

OBJECTIVE: To analyze the perspective of children on their health condition and experiences related to outpatient hospital care and the use of the puppets as a playful strategy to collect data. METHOD: A qualitative study with 16 children diagnosed with chronic diseases recruited in a pediatric outpatient clinic in countryside of Sao Paulo. Data were collected in October 2016 using a semi-structured interview and a puppet to facilitate communication. The interview transcripts were subjected to inductive thematic analysis. RESULTS: We constructed four themes: "Children in ambulatory follow-up: what do they know?"; "Emotions manifested in outpatient follow-up"; "The outpatient clinic of my dreams" and; "The use of puppets and the playful universe of interviews". FINAL CONSIDERATIONS: We identified the reasons and main feelings experienced during outpatient care, as well as the children's preferences regarding the physical and structural aspects of the outpatient clinic.


Assuntos
Assistência Ambulatorial/métodos , Comunicação , Jogos e Brinquedos , Criança , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , Masculino
18.
BMJ Open ; 9(1): e026524, 2019 01 21.
Artigo em Inglês | MEDLINE | ID: mdl-30670530

RESUMO

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.

19.
Rev. gaúch. enferm ; 40: e20180238, 2019. graf
Artigo em Português | LILACS-Express | ID: biblio-1004091

RESUMO

Resumo OBJETIVO Descrever as experiências de pais de crianças e adolescentes com leucemia quanto à transição de cuidados do hospital para o domicílio. MÉTODO Estudo qualitativo, descritivo, realizado com nove mães e dois pais, em um hospital público pediátrico de São Paulo-SP. Os dados foram coletados por meio de entrevistas semiestruturadas, de maio de 2016 a janeiro de 2017, organizados no software Atlas.ti 7® e submetidos à análise de conteúdo indutiva. Adotou-se a Teoria das Mudanças como referencial teórico. RESULTADOS A categoria central foi "A volta para casa: apropriando-se de uma nova realidade", composta de três subcategorias: apreensão com a nova realidade de cuidados; impacto imediato das mudanças; e implementação do plano de orientações. CONCLUSÃO A transição para o domicílio fez com que os pais tivessem que se adaptar à nova e complexa realidade de cuidados. Melhorias no planejamento e sistematização da primeira alta mostram-se necessárias.


Resumen OBJETIVO Describir las experiencias de padres de niños y adolescentes con leucemia en cuanto a la transición de cuidados del hospital para el hogar. MÉTODO Estudio cualitativo, descriptivo, realizado con nove madres y dos padres, en un hospital público pediátrica en São Paulo-SP. La recolecta de datos fue llevada a cabo mediante entrevistas semiestructuradas, de mayo de 2016 a enero de 2017, organizados en el software Atlas.ti 7® y sometidos al análisis de contenido inductivo. La Teoría de los Cambios fue utilizada como referencial teórico. RESULTADOS La categoría central fue "La volta a casa: el nacimiento de una nova realidad", que derivo tres subcategorías: aprensión con la nova realidad de cuidados; impacto inmediato de las mudanzas; e implementación del plano de orientación. CONCLUSIÓN La transición hacia el domicilio ha hecho que los padres se adapten a una nueva y compleja realidad de cuidados. Las mejoras en la planificación y sistematización de la primera alta se muestran necesarias.


Abstract 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.

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Texto & contexto enferm ; 28: e20160108, 2019. tab
Artigo em Inglês | LILACS-Express | ID: biblio-1004823

RESUMO

ABSTRACT Objective: to describe the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, a pain assessment measure, for use with Brazilian children and adolescents with cancer. Method: a methodological and cross-sectional study was undertaken. The steps in the cross-cultural adaptation process of the tool that resulted in the semantic validation followed an adapted method, including: initial translation, consensus version of translations, evaluation by Expert Committee, back-translation, comparison with original tool and actual semantic validation. Results: the initial translation process of the tool until the final consensus was reached took approximately four months. In the evaluation by the Expert Committee, three health professionals participated in the study, who were knowledgeable on the theme and mastered the English language. In the semantic validation, 35 children and adolescents aged between eight and 18 unfinished years participated, who were patients at the institution where children and adolescents with cancer were treated and monitored. After concluding all steps, the researchers met to discuss the proposed changes. At the end of the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, all initially proposed 67 pain descriptors were maintained in their Portuguese version. Conclusion: the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool were executed and described in detail, evidencing the rigorous development of the study.


RESUMEN Objetivo: describir las etapas realizadas en el proceso de adaptación cultural del instrumento de evaluación del dolor Adolescent Pediatric Pain Tool, para niños y adolescentes brasileños con cáncer. Método: se trata de un estudio metodológico y transversal. Las etapas recorridas del proceso de adaptación cultural del instrumento hasta la validación semántica siguieron un método adaptado que comprendió: traducción inicial, síntesis de las traducciones, evaluación por el Comité de Especialistas, retrotraducción, comparación con el instrumento original y validación semántica propiamente dicha. Resultados: el proceso de traducción inicial del instrumento hasta la obtención del consenso final tardó, aproximadamente, cuatro meses. En la etapa de evaluación por el Comité de Especialistas, participaron del estudio tres profesionales del área de la salud, con conocimiento en la temática y dominio de la lengua inglesa. Para la etapa de validación semántica, participaron 35 niños y adolescentes de ocho a 18 años incompletos, atendidos en la institución donde se realizaban el tratamiento y el seguimiento de niños y adolescentes con cáncer. Después de la conclusión de todas las etapas, los investigadores se reunieron para discutir los cambios propuestos. Al final de la adaptación cultural del instrumento Adolescent Pediatric Pain Tool, los 67 descriptores del dolor, propuesto inicialmente se mantuvieron en su versión portuguesa. Conclusión: las etapas del proceso de adaptación cultural del Adolescent Pediatric Pain Tool se alcanzaron y su descripción detallada, para evidenciar el rigor en la conducción del estudio.


RESUMO Objetivo: descrever as etapas realizadas no processo de adaptação cultural do instrumento de avaliação da dor Adolescent Pediatric Pain Tool, para crianças e adolescentes brasileiros com câncer. Método: trata-se de um estudo metodológico e transversal. As etapas percorridas do processo de adaptação cultural do instrumento até a validação semântica seguiram um método adaptado que compreendeu: tradução inicial, síntese das traduções, avaliação pelo Comitê de Especialistas, retrotradução, comparação com o instrumento original e validação semântica propriamente dita. Resultados: o processo de tradução inicial do instrumento até a obtenção do consenso final levou, aproximadamente, quatro meses. Na etapa de avaliação pelo Comitê de Especialistas, participaram do estudo três profissionais da área da saúde, com conhecimento na temática e domínio da língua inglesa. Para a etapa de validação semântica, participaram 35 crianças e adolescentes de oito a 18 anos incompletos, atendidos na instituição onde eram realizados o tratamento e o seguimento de crianças e adolescentes com câncer. Após a conclusão de todas as etapas, os pesquisadores se reuniram para discutir as mudanças propostas. Ao final do processo de adaptação cultural do Adolescent Pediatric Pain Tool, todos os 67 descritores da dor, propostos inicialmente, foram mantidos em sua versão em português. Conclusão: as etapas do processo de adaptação cultural do Adolescent Pediatric Pain Tool foram alcançadas e sua descrição detalhada de forma a evidenciar o rigor na condução do estudo.

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