Stress related to care: the impact of childhood cancer on the lives of parents / Estresse relacionado ao cuidado: o impacto do câncer infantil na vida dos pais / Estrés relacionado al cuidado: el impacto del cáncer infantil en la vida de los padres

OBJECTIVES: The objective was to assess the stress levels of parents of children with cancer and to identify correlations among demographic data and anxiety levels. METHODS: A descriptive, cross-sectional study, conducted in two Brazilian institutions, with 101 parents of children with cancer. Through interviews, parents responded to two instruments: Pediatric Inventory for Parents - Brazilian version, which assesses stress levels, and State-Trait Anxiety Inventory, for the measurement of anxiety. The correlations between the instruments and the sociodemographic variables of the parents and children were evaluated using the Spearman correlation coefficient. RESULTS: Higher levels of stress and anxiety were seen by young parents, young children and with less time since diagnosis. The fear of death and the disease impact on the life of a child were the events considered the most stressful for the parents . CONCLUSIONS: In clinical practice, the nurse who can identify the occurrence of these symptoms becomes capable of planning nursing care that includes the family in decisions about the care. Moreover, she can provide support to help parents manage their stress levels and positively face the illness of their children.

OBJETIVOS: o objetivo foi avaliar o nível de estresse dos pais de crianças com câncer e identificar correlações entre os dados sociodemográficos e os níveis de ansiedade. MÉTODO: trata-se de estudo descritivo, transversal, realizado em duas instituições brasileiras, com 101 pais de crianças com câncer. Por meio de entrevista, os pais responderam a dois instrumentos: Pediatric Inventory for Parents - versão brasileira, que avalia níveis de estresse, e Inventário de Ansiedade Traço-Estado, para medida da ansiedade. As correlações entre os instrumentos e as variáveis sociodemográficas dos pais e das crianças foram avaliadas pelo coeficiente de correlação de Spearman. RESULTADOS: os maiores níveis de estresse e ansiedade foram evidenciados por pais jovens, de crianças pequenas e com menos tempo de diagnóstico. O medo da morte e do impacto da doença na vida da criança foram os eventos considerados mais estressantes para os pais. CONCLUSÕES: na prática clínica, o enfermeiro que consegue identificar a ocorrência desses sintomas torna-se capaz de planejar assistência de enfermagem que inclua a família nas decisões sobre o cuidado. Além disso, pode fornecer subsídios para auxiliar os pais a gerenciar seus níveis de estresse e enfrentar positivamente a doença dos seus filhos.

OBJETIVOS: El objetivo fue evaluar el nivel de estrés de los padres de niños con cáncer e identificar correlaciones entre los datos sociodemográficos y los niveles de ansiedad. MÉTODO: Estudio descriptivo transversal, realizado en dos instituciones brasileñas, con 101 padres de niños con cáncer. A través de entrevista, los padres contestaron a dos instrumentos: Pediatric Inventory for Parents - versión brasileña, que evalúa niveles de estrés, e Inventário de Ansiedade Traço-Estado, para medir la ansiedad. Las correlaciones entre los instrumentos y las variables sociodemográficas de los padres y de los niños fueron evaluados por el Coeficiente de Correlación de Spearman. RESULTADOS: Los más altos niveles de estrés y ansiedad se evidenciaron por padres jóvenes, de niños pequeños y con menos tiempo de diagnóstico. El miedo a la muerte y del impacto de la enfermedad en la vida del niño se consideraron los eventos más estresantes para los padres. CONCLUSIONES: En la práctica clínica, el enfermero que consigue determinar la ocurrencia de estos síntomas se vuelve capaz de elaborar un plan de cuidados de enfermería, que incluye a la familia en las decisiones sobre el cuidado. Además, puede proporcionar subsidios para ayudar a los padres a manejar sus niveles de estrés y a enfrentar la enfermedad de sus hijos de forma positiva.

Pacientes pediátricos oncológicos fora de possibilidades terapêuticas curativas / Pediatric oncology patients in palliative care: evaluation of symptoms, depression, fatigue and quality of life

Atualmente o câncer infantil é considerado uma doença potencialmente curável, atingindo índices de até 70% de cura. ... No Departamento de Pediatria do Hospital A.C. Camargo, 70 crianças foram acompanhadas em cuidados paliativos durante o período de agosto de 2003 a dezembro de 2006. Nossos objetivos incluíram validar nesta população um escore de predição de tempo de sobrevida previamente descrito, além de avaliar o impacto de sintomas, fadiga, depressão e qualidade de vida. Fatores que influenciaram o local do óbito também foram analisados. ... Os pacientes apresentaram, ao início do acompanhamento em cuidados paliativos, uma média de 10,5 sintomas, variando de 2 até 22 sintomas para um único paciente. Os dez sintomas mais prevalentes foram dor (68,6%), estar ou sentir-se nervoso (57,1%), estar ou sentir-se sonolento (55,7%), falta de energia (51,4%), sentimento de tristeza (48,6%), perda de apetite (47,1%), perda de peso (47,1%), boca seca (40,0%), náusea ou sensação de que poderia vomitar (40,0%) e estar ou sentir-se irritado/irritável (38,6%). ... As variáveis sintomas, fadiga, depressão e qualidade de vida não se mostraram significativas na análise múltipla e, por conseqüência, não houve necessidade de integrá-las a um novo escore. ... A predição de sobrevida, bem como do local do óbito, através da análise de variáveis de fácil obtenção, são dados importantes na busca para oferecer suporte e informação, além de possibilitar um planejamento melhor do cuidado prestado ao paciente e sua família neste momento tão difícil...

Childhood cancer is considered a curable disease reaching approximately 70% of survival. Unfortunately, despite the advances and technological resources available for treating childhood cancer, there are patients and families who may not be cured and will need comfort and dignity by incorporating palliative care assistance. At the Pediatric Department of Hospital A. C. Camargo 70 children in palliative care were followed and evaluated from August 2003 to December 2006. Our aims included the validation of a score predicting survival in this populations and evaluate the impact of symptoms, fatigue, depression and quality of life in the length of survival. Factors associated with location of death were also evaluated. The score predicting survival was validated in this population and included the following variables: diagnosis (leukemias/lymphomas or solid/central nervous system tumors), home care provider (the mother or other person), anemia (hemoglobin level less than 8.0 g/dl) and Play performance status score given by the home care provider (p<0.001). We were able to classify the patients into 3 categories according to the probability of survival at 60 days after the inclusion of palliative care. At the beginning of palliative care, patients presented a mean of 10.5 symptoms, ranging from 2 to 22 symptoms for one child. The ten symptoms with higher prevalence were: pain (68.6%), feeling nervous (57.1%), feeling drowsy (55.7%), lack of energy (51.4%), sadness (48.6%), lack of appetite (47.1%), weight loss (47,1%), dry mouth (40.0%), nausea (40.0%) and feeling irritable (38.6%). Data from patients with 7 to 12 years old, showed that none of them presented symptomatology for depression, 29.4% presented higher scores for fatigue and just one of them had unsatisfactory quality of life. Regarding adolescents (older than 12 years), 4 out of 9 adolescents who answered the questionnaires presented symptomatology for depression and 45.5% presented higher scores for fatigue. The variables symptoms, fatigue, depression and quality of life were not significantly associated with length of survival and therefore it was not necessary to develop a new score. Regarding location of death, 22.2% of our patients died at home and 27.0% died at our hospital with a less than 48 hours period of hospitalization. Age and number of symptoms were the only variables associated with location of death: a patient with 13 years old or older had 5.3 the odd of dying at the hospital when compared with the youngest (p=0,016) as well as a patient with 11 symptoms or more at the transition to palliative care had 3.1 the odd of dying at the hospital when compared with a patient with at most 10 symptoms (p=0,050). The improvement of the techniques to predict survival as well as to determine the odds of specific location of death through the analysis of variables configure important data in order to offer support and information. This can enable the health care team to offer a better care to the patient and his family in such a difficult period (AU)

Prognostic Factors in Pediatric Palliative Care: Development of a Survival Predicting Score

OBJECTIVE: To identify prognostic factors that predictssurvival in children and adolescents in palliative care.MATERIAL AND METHODS: 87 children referred to thepediatric palliative care team were evaluated for socialdemographic, clinical, and laboratory variables.RESULTS: A prognostic score was developed in 49patients based on a final model, which included thefollowing variables: diagnosis, anemia, home careprovider and patient’s (PPS) score given by homecaregiver. The sum of the single scores has given anoverall score for each patient and was used to subdividethe study population into three groups, with differentprobability of 60-day survival: (1) Group A: survivalprobability 84.4%; (2) Group B: survival probability57.8%; (3) Group C: survival probability 15.4% (p<0.001).CONCLUSION: A pediatric palliative care score basedon easily accessible variables proved to be statisticallysignificant (p<0.05) in a multivariate analysis. The scoreis valid to this population. Factors that helpmultidisciplinary team to predict the life expectancyenable adequate information to be given to patients andfamilies participating in therapeutic decision-makingissues.