28 research outputs found

    Cultural adaptation to Brazil of the questionnaire Costs of caring for children with cancer.

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    Objectiveto present the cultural adaptation of the questionnaire Costs of caring for children with cancer, offering a valid and reliable tool to assess the economic repercussions of childhood cancer for Brazilian families.Methodit is a methodological research with a cross-sectional design. The methodological framework to validate the questionnaire was a combined process that included seven steps: translation to Portuguese; first translated consensus version; evaluation by Expert Committee; consensus on the Expert Committee version; back-translation; consensus of back-translated versions; semantic validation. The study was conducted in two phases: phase one was the translation and back-translations process, with five expert committee members. Phase two was the semantic validation, with 24 participants, who answered an instrument about their impressions of the questionnaire and suggested modifications.Resultsin phase one, items were included, excluded, and replaced to make the content equivalent and valid for use with Brazilian context. In phase two, the majority of the participants were mothers, who made suggestions about the relevance and clarity of the items in the questionnaire.Conclusionsthe authors discussed these recommendations and made adaptations, turning the questionnaire into a valid and reliable tool for application

    Adaptação cultural do instrumento Costs of caring for children with cancer para o Brasil

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    OBJETIVO: realizar la adaptación cultural del cuestionario Costs of caring for children with cancer, que pueda resultar en un instrumento válido y confiable para evaluar las repercusiones económicas del cáncer infanto-juvenil para familias brasileñas. MÉTODO: estudio metodológico de diseño trasversal. La trayectoria metodológica para validar este instrumento fue un proceso combinado que incluyó siete pasos: traducción al portugués; primer consenso de la versión traducida; evaluación por el Comité de Expertos; versión de consenso del Comité de Expertos; retro-traducción; consenso de las versiones retro-traducidas; validación semántica. El estudio se realizó en dos etapas: la primera fue la traducción y retro-traducción, con cinco participantes en el Comité de Expertos. La segunda fase fue la validación semántica, 24 participantes respondieron un instrumento en el que indicaron sus impresiones sobre el cuestionario y sugirieron modificaciones. RESULTADOS: en la primera fase, ítems fueron incluidos, excluidos y sustituidos para mejor adaptación al contexto brasileño. En la segunda fase, la mayoría de los participantes era madres, quienes hicieron sugerencias sobre la pertinencia y claridad de los ítems del cuestionario. CONCLUSIÓN: tras discusión entre las autoras sobre las sugestiones propuestas, fueron efectuadas adaptaciones, haciendo el cuestionario válido y confiable para aplicación.OBJETIVO: realizar a adaptação cultural do questionário Costs of caring for children with cancer que possa resultar em um instrumento válido e confiável para avaliar as repercussões econômicas do câncer infantojuvenil para famílias brasileiras. MÉTODO: este é um estudo metodológico de delineamento transversal. O percurso metodológico para validar este instrumento foi um processo combinado que incluiu sete etapas: tradução para o português; primeira versão consensual traduzida; avaliação pelo Comitê de Especialistas; versão consensual do Comitê de Especialistas; retrotradução; versão consensual da retrotradução e validação semântica. O estudo foi realizado em duas fases: a primeira fase abrangeu os processos de tradução e retrotradução e contou com um Comitê de Especialistas de cinco membros. A segunda fase compreendeu a validação semântica, com 24 participantes que responderam a um instrumento a respeito de suas impressões sobre o questionário e sugeriram modificações. RESULTADOS: na primeira fase, incluíram-se, excluíram-se e substituíram-se itens para adaptar o instrumento ao contexto brasileiro. Na segunda fase, a maioria dos participantes eram mães que fizeram sugestões sobre a relevância e a clareza dos itens do questionário. CONCLUSÃO: as autoras discutiram as recomendações e fizeram adaptações, tornando o questionário válido e confiável para aplicação.OBJECTIVE: to present the cultural adaptation of the questionnaire Costs of caring for children with cancer, offering a valid and reliable tool to assess the economic repercussions of childhood cancer for Brazilian families. METHOD: it is a methodological research with a cross-sectional design. The methodological framework to validate the questionnaire was a combined process that included seven steps: translation to Portuguese; first translated consensus version; evaluation by Expert Committee; consensus on the Expert Committee version; back-translation; consensus of back-translated versions; semantic validation. The study was conducted in two phases: phase one was the translation and back-translations process, with five expert committee members. Phase two was the semantic validation, with 24 participants, who answered an instrument about their impressions of the questionnaire and suggested modifications. RESULTS: in phase one, items were included, excluded, and replaced to make the content equivalent and valid for use with Brazilian context. In phase two, the majority of the participants were mothers, who made suggestions about the relevance and clarity of the items in the questionnaire. CONCLUSIONS: the authors discussed these recommendations and made adaptations, turning the questionnaire into a valid and reliable tool for application

    Prevention of Morbidity in Sickle Cell Disease (POMS2a)-overnight auto-adjusting continuous positive airway pressure compared with nocturnal oxygen therapy: a randomised crossover pilot study examining patient preference and safety in adults and children.

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    DESIGN: This randomised crossover trial compared nocturnal auto-adjusting continuous positive airway pressure (APAP) and nocturnal oxygen therapy (NOT) in adults and children with sickle cell anaemia, with patient acceptability as the primary outcome. Secondary outcomes included pulmonary physiology (adults), safety, and daily pain during interventions and washout documented using tablet technology. METHODS: Inclusion criteria were age > 8 years and the ability to use an iPad to collect daily pain data. Trial participation was 4 weeks; week 1 involved baseline data collection and week 3 was a washout between interventions, which were administered for 7 days each during weeks 2 and 4 in a randomised order. Qualitative interviews were transcribed verbatim and analysed for content using a funnelling technique, starting generally and then gaining more detailed information on the experience of both interventions. Safety data included routine haematology and median pain days between each period. Missing pain day values were replaced using multiple imputation. RESULTS: Ten adults (three female, median age 30.2 years, range 18-51.5 years) and eleven children (five female, median age 12 years, range 8.7-16.9 years) enrolled. Nine adults and seven children completed interviews. Qualitative data revealed that the APAP machine was smaller, easier to handle, and less noisy. Of 16 participants, 10 preferred APAP (62.5%, 95% confidence interval (CI) 38.6-81.5%). Haemoglobin decreased from baseline on APAP and NOT (mean difference -3.2 g/L (95% CI -6.0 to -0.2 g/L) and -2.5 g/L (95% CI -4.6 to 0.3 g/L), respectively), but there was no significant difference between interventions (NOT versus APAP, 1.1 (-1.2 to 3.6)). Pulmonary function changed little. Compared with baseline, there were significant decreases in the median number of pain days (1.58 for APAP and 1.71 for NOT) but no significant difference comparing washout with baseline. After adjustment for carry-over and period effects, there was a non-significant median difference of 0.143 (95% CI -0.116 to 0.401) days additional pain with APAP compared with NOT. CONCLUSION: In view of the point estimate of patient preference for APAP, and no difference in haematology or pulmonary function or evidence that pain was worse during or in washout after APAP, it was decided to proceed with a Phase II trial of 6 months APAP versus standard care with further safety monitoring for bone marrow suppression and pain. TRIAL REGISTRATION: ISRCTN46078697 . Registered on 18 July 2014

    Impact of Childhood Cancer on Parents` Relationships: An Integrative Review

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    Purpose: The diagnosis of cancer and the treatment decisions associated with it may cause uncertainty, stress, and anxiety among parents. Emotional tensions can affect parents` relationships during the trajectory of the child`s cancer illness. We conducted an integrative review to examine the evidence related to the effects of childhood cancer on parents` relationships. Methods: An integrative literature search of studies published between 1997 and 2009 was conducted in the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychology Information (PsycINFO), PubMed, Scopus, CUIDEN, and Latin American and Caribbean Health Science Literature (LILACS). The key words used were neoplasms, child, marriage, spouses, family relations, and nursing. Articles were reviewed if the (a) topic addressed parents` relationships during childhood cancer; (b) participants were mothers, fathers, or both; (c) design was either qualitative or quantitative; (d) language was English, Portuguese, or Spanish; (e) date of publication was between January 1997 and October 2009; and (f) abstract was available. Results: Fourteen articles met the search criteria and were reviewed using Cooper`s framework for integrative reviews. Four themes emerged: (a) changes in the parents` relationship during the trajectory of the child`s illness; (b) difficulty in communication between couples; (c) gender differences in parental stress and coping; and (d) role changes. Conclusions and Implications: Findings revealed positive and negative changes in parents` relationships, communication, stress, and roles. Nurses need to assess the impact of cancer diagnosis and treatments on parent relationships, offer support and encouragement, and allow expression of feelings. Future research is needed to develop and test interventions that increase parents` potentials and strengthen relationships during the challenging trajectory of their children`s cancer and treatment. Clinical Relevance: The multiple sources of stress and uncertainty associated with a child`s cancer diagnosis and treatment affect parents` relationships. Difficulties in communication appear frequently in parents` relationship. Our findings may guide healthcare professionals in identifying parents at risk for developing conflicts, communication problems, and lack of alignment between parents that could interfere with providing optimal care for their child with cancer. Healthcare professionals may promote dialogue and encourage parents to express their feelings, seek mutual support, and establish a partnership in dealing with the child`s illness.Brazilian Scientific and Technological Development Counci. (Conselho Nacional de Desenvolvimento Cientifico e Tecnologico-CNPq

    Cultural adaptation of the Adolescent Pediatric Pain Tool in Turkish children with cancer

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    WOS: 000438477600005PubMed ID: 29784135Purpose: Pain is very common among pediatric cancers. This study aimed to assess the reliability and validity of the Turkish version of the Adolescent Pediatric Pain Tool (APPT). Methods: In this methodological study, language validity and content validity of the words in the third section of the scale, which was administered to children with cancer, were tested using the Q-sort method. The APPT was used to measure test-retest reliability once for each of the 1st, 2nd and 3rd weeks of the chemotherapy protocols for 30 children. A reliability test was conducted using the APPT for 96 children with cancer. Results: The number of words included in the third section of the APPT was reduced to 56 following the completion of the language and content validity using the Q-sort method. In the test-retest method, results from the three measures taken showed that the infra-class correlation coefficient was good. The internal consistency of the scale was also good (alpha = .78) in terms of the total number of body areas marked on body outline diagram, pain severity, pain intensity ratings, total number of word descriptors, and total number of sensory, affective, evaluative and temporal word descriptors. Correlations were found between the total number of body areas marked on the body outline diagram and the total number of word descriptors (r = .53), the pain severity and pain intensity ratings (r = .95), and the total number of word descriptors (r = .38). Conclusions: The Turkish version of the APPT was determined to be valid, reliable and easy to use for pediatric cancer patients
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