The therapeutic journey of families of children with respiratory diseases in the public health service

This study's purpose was to identify the therapeutic journey of families seeking health care for their children with respiratory diseases. This qualitative study had the participation of parents of children younger than five years old who were hospitalized with respiratory diseases. Path mapping was used as an instrument to collect data, which was analyzed through thematic analysis. The finding indicate that families sought the health services as soon as they perceived symptoms and had access to medical care, however such care was not decisive in resolving their health issues. Even though the families returned to the service at least another three times, the children had to be hospitalized. The attributes of primary health care were not observed in the public health services, while therapeutic encounters had no practical success.

The double task of preventing malnutrition and overweight: a quasi-experimental community-based trial

Background: The Maternal-Child Pastoral is a volunteer-based community organization of the Dominican Republic that works with families to improve child survival and development. A program that promotes key practices of maternal and child care through meetings with pregnant women and home visits to promote child growth and development was designed and implemented. This study aims to evaluate the impact of the program on nutritional status indicators of children in the first two years of age. Methods: A quasi-experimental design was used, with groups paired according to a socioeconomic index, comparing eight geographical areas of intervention with eight control areas. The intervention was carried out by lay health volunteers. Mothers in the intervention areas received home visits each month and participated in a group activity held biweekly during pregnancy and monthly after birth. The primary outcomes were length and body mass index for age. Statistical analyses were based on linear and logistic regression models. Results: 196 children in the intervention group and 263 in the control group were evaluated. The intervention did not show statistically significant effects on length, but point estimates found were in the desired direction: mean difference 0.21 (95%CI −0.02; 0.44) for length-for-age Z-score and OR 0.50 (95%CI 0.22; 1.10) for stunting. Significant reductions of BMI-for-age Z-score (−0.31, 95%CI −0.49; -0.12) and of BMI-for-age > 85th percentile (0.43, 95%CI 0.23; 0.77) were observed. The intervention showed positive effects in some indicators of intermediary factors such as growth monitoring, health promotion activities, micronutrient supplementation, exclusive breastfeeding and complementary feeding. Conclusions: Despite finding effect measures pointing to effects in the desired direction related to malnutrition, we could only detect a reduction in the risk of overweight attributable to the intervention. The findings related to obesity prevention may be of interest in the context of the nutritional transition. Given the size of this study, the results are encouraging and we believe a larger study is warranted.

Monitoramento do desenvolvimento infantil realizado no Brasil

OBJETIVO: Revisar a literatura científica para verificar como a vigilância do desenvolvimento infantil vem sendo realizada no Brasil. FONTES DE DADOS: Pesquisa em bases de dados (PubMed, Medline, SciELO e Banco de Teses da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior) sobre estudos das práticas médicas em relação à vigilância e ao monitoramento do desenvolvimento infantil no Brasil, de 2000 a 2011. Os termos usados para pesquisa foram: vigilância de desenvolvimento infantil, intervenção precoce, triagem de desenvolvimento e testes de triagem de desenvolvimento. Foram encontrados dez textos referentes ao tema em estudo. Artigos originais, de revisão e teses foram revisados, bem como as listas de referências das publicações sobre o assunto. SÍNTESE DOS DADOS: Os estudos sobre a prática do monitoramento do desenvolvimento infantil no Brasil apontam uma importante falha, desde a formação do médico pediatra até a prática clínica, em relação a este tema. CONCLUSÕES: Há necessidade urgente, principalmente frente a uma população emergente de prematuros, que os pediatras façam uma reciclagem do conhecimento sobre o desenvolvimento infantil.

Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

Consensus Statement on Standard of Care for Congenital Myopathies

Recent progress in scientific research has facilitated accurate genetic and neuropathological diagnosis of congenital myopathies. However, given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. This consensus statement aims to provide care guidelines for congenital myopathies. The International Standard of Care Committee for Congenital Myopathies worked through frequent e-mail correspondences, periodic conference calls, 2 rounds of online surveys, and a 3-day workshop to achieve a consensus for diagnostic and clinical care recommendations. The committee includes 59 members from 10 medical disciplines. They are organized into 5 working groups: genetics/diagnosis, neurology, pulmonology, gastroenterology/nutrition/speech/oral care, and orthopedics/rehabilitation. In each care area the authors summarize the committee's recommendations for symptom assessments and therapeutic interventions. It is the committee's goal that through these recommendations, patients with congenital myopathies will receive optimal care and improve their disease outcome.

Prevalence of overweight preschool children in public day care centers: a cross-sectional study

CONTEXT AND OBJECTIVE: Brazil is undergoing a period of epidemiological transition associated with demographic and nutritional changes. The prevalence of obesity is also increasing in children and is causing numerous health problems that are becoming public health issues. The aim here was to evaluate the prevalence of overweight among children of two and three years of age. DESIGN AND SETTING: Cross-sectional study in municipal day care centers in Taubate, state of Sao Paulo, Brazil. METHODS: Weight and height measurements were made on 447 preschool children forming a probabilistic randomized sample. Their body mass index (BMI) was calculated. Their nutritional status was classified using the World Health Organization reference cutoff points (2006). Their mean weight, height and BMI were compared according to their age and sex. RESULTS: The mean values for the final sample (n = 447) were as follows: mean age: 38.6 months (+/- 3.5) and Z scores for: weight/height (W/H): 0.50 (+/- 1.22); height/age: -0.03 (+/- 1.07); weight/age (W/A): 0.51 (+/- 1.23); and BMI: 0.51(+/- 1.23). The prevalence of overweight children (BMI > 1 z) was 28.86%, while the prevalence of underweight children (BMI < -2 z) was 0.89%. There were no differences in mean BMI among the two and three-year age groups (P = 0.66). CONCLUSION: A high prevalence of overweight was observed in the sample of two and three-year-old children, with practically no malnutrition, thus showing that a significant nutritional transition may already be occurring, even in medium-sized cities of developing countries.

Syntax of social life in postpartum depression: Mother-child interaction

Purpose: Understand the difficulties and experienced of individuals suffering from postpartum depression, related to mood disturbances, the mother-child bond and its repercussions in the meanings established for the experience of being a mother. Methods: Forty-one patients were interviewed, with ages ranging from 20 to 49 years, from a total of 106 attended at the Primary Care Unit, in the interior of the state of Parahiba, Brazil. A sample of 21 women was selected, presenting an inclusion profile, propitious to mapping postpartum depression. The eligible patients were referred by two PSF (Health Family) teams (one each from the urban and rural zones), aimed at diagnosing the psychic disturbance of the perperium. They were accompanied by a psychologist and all signed an informed consent form. A field diary supported the information recorded. Beck's Depression Inventory complemented the inclusion and follow-up of the patients. The data were analyzed statistically. Results: We confirmed the findings of the most recent studies that infant abandonment in the postpartum period occurs in situations where multiple and serious factors add up, such as misery (86.7%), little schooling (67%), lack of a support network (36.5%), estrangement of the mother's family relations (12%) and lack of paternal involvement (91.5%). Conclusion: The feeling of psyching pain and suffering, resulting from postpartum depression, is the most emphasized by women (87%) because it triggers the greatest discomfort, due to the difficulty in overcoming it.

Maternal factors regulating preterm infants' responses to pain and stress while in maternal kangaroo care

The relationship between maternal factors and the response of preterm infants to pain and stress experienced during heel puncture while in maternal kangaroo care was investigated. This descriptive study included 42 mothers and their preterm infants cared for in a neonatal unit. Data were collected in the baseline, procedure, and recovery phases. We measured the neonates' facial actions, sleep and wake states, crying, salivary cortisol levels, and heart rate, in addition to the mothers' behavior, salivary cortisol levels, and mental condition. The influence of the maternal explanatory variables on the neonatal response variables were verified through bivariate analysis, ANOVA, and multiple regression. The mothers' behavior and depression and/or anxiety did not affect the neonates' responses to pain and stress, though the mothers' levels of salivary cortisol before the procedure explained the variance in the neonates' levels of salivary cortisol after the procedure (p=0.036). Additionally, the mothers' baseline levels of salivary cortisol along with the neonates' age explained the variance in the neonates' heart rate (p=0.001). The ability of mothers to regulate their own stress contributed to the infants' responses to pain and stress.

Burden of maternal bipolar disorder on at-risk offspring: A controlled study on family planning and maternal care

Introduction: Bipolar disorder (BD) is a highly incapacitating disease typically associated with high rates of familial dysfunction. Despite recent literature suggesting that maternal care is an important environmental factor in the development of behavioral disorders, it is unclear how much maternal care is dysfunctional in BD subjects. Objective: The objective of this study was to characterize maternal care in DSM-IV/SCID diagnosed BD type I subjects compared to healthy controls with (PD) and without (NPD) other psychiatric diagnoses. Materials and methods: Thirty-four BD mothers and 106 controls underwent an interview about family planning and maternal care, obstetrical complications, and mother-child interactions. K-SADS-PL questions about violence exposure were used to ascertain domestic violence and physical/sexual abuse. Results: BD mothers were less likely to have stable unions (45.5%; p < 0.01) or to live with the biological father of their children (33.3%; p < 0.01), but had higher educational level and higher rates of social security use/retirement. They also had fewer children and used less contraceptive methods than controls. Children of BD women had higher rates of neonatal anoxia, and reported more physical abuse (16.1%; p = 0.02) than offspring of NPD mothers. Due to BD mothers' symptoms, 33.3% of offspring suffered physical and/or psychological abuse. Limitations: Post hoc analysis, and the use of questions as a surrogate of symptoms as opposed to validated instruments. Conclusion: This is one of few reports confirming that maternal care given by BD women is dysfunctional. BD psychopathology can lead to poor maternal care and both should be considered important environmental risk factors in BD, suggesting that BD psychoeducation should include maternal care orientation. (C) 2012 Elsevier B.V. All rights reserved.

Weight and neuro-psycho-motor development in children discharged from neonatal intensive care unit

Background: Low birth weight affects child growth and development, requiring the intensive use of health services. There are conversely proportional associations between prematurity and academic performance around the world. In this study we evaluated factors involved in weight and neuropsychomotor profile in one and two years old discharged from Intensive Care Units (ICU). Methods/Design: We investigated 203 children from the ICU who were followed for 24 +/- 4 months. The research was conducted by collecting data from medical records of patients in a Follow-up program. We investigated the following variables: inadequate weight at one year old; inadequate weight at two years old and a severe neurological disorder at two years old. Results: We observed increase of almost 20% in the proportion of children which weighted between the 10th and 90th percentiles and decrease of around 40% of children below the 15th percentile, from one to two years old. In almost 60% of the cases neuropsychomotor development was normal at 2 years old, less than 15% of children presented abnormal development. Variables that remained influential for clinical outcome at 1 and 2 years old were related to birth weight and gestational age, except for hypoglycemia. Neurological examination was the most influential variable for severe neurological disturbance. Conclusion: Hypoglycemia was considered a new fact to explain inadequate weight. The results, new in Brazil and difficult in terms of comparison, could be used to identify risk factors and for a better approach of newborn discharged from ICUs.

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a "roadmap" for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH.