Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

Abstract Objectives To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children. Methods It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used. Results Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37). Conclusions The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil.

OBJECTIVES: To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children. METHODS: It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used. RESULTS: Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37). CONCLUSIONS: The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Child immunization status according to number of siblings and birth order in 85 low- and middle-income countries: a cross-sectional study.

Background: Identification of unvaccinated children is important for preventing deaths due to infections. Number of siblings and birth order have been postulated as risk factors for zero-dose prevalence. Methods: We analysed nationally representative cross-sectional surveys from 85 low and middle-income countries (2010-2020) with information on immunisation status of children aged 12-35 months. Zero-dose prevalence was defined as the failure to receive any doses of DPT (diphtheria-pertussis-tetanus) vaccine. We examined associations with birth order and the number of siblings, adjusting for child's sex, maternal age and education, household wealth quintiles and place of residence. Poisson regression was used to calculate zero-dose prevalence ratios. Findings: We studied 375,548 children, of whom 13.7% (n = 51,450) were classified as zero-dose. Prevalence increased monotonically with birth order and with the number of siblings, with prevalence increasing from 11.0% for firstborn children to 17.1% for birth order 5 or higher, and from 10.5% for children with no siblings to 17.2% for those with four or more siblings. Adjustment for confounders attenuated but did not eliminate these associations. The number of siblings remained as a strong risk factor when adjusted for confounders and birth order, but the reverse was not observed. Among children with the same number of siblings, there was no clear pattern in zero-dose prevalence by birth order; for instance, among children with two siblings, the prevalence was 13.0%, 14.7%, and 13.3% for firstborn, second, and third-born, respectively. Similar results were observed for girls and boys. 9513 families had two children aged 12-35 months. When the younger sibling was unvaccinated, 61.9% of the older siblings were also unvaccinated. On the other hand, when the younger sibling was vaccinated, only 5.9% of the older siblings were unvaccinated. Interpretation: The number of siblings is a better predictor than birth order in identifying children to be targeted by immunization campaigns. Zero-dose children tend to be clustered within families. Funding: Gavi, the Vaccine Alliance.

Quality of life of families and siblings of children and adolescents with meningomyelocele.

BACKGROUND: Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. METHODS: One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. RESULTS: Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. CONCLUSIONS: Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

Transdiagnostic dimensions of symptoms and experiences associated with immune proteins in the continuity of psychosis.

BACKGROUND: There is limited evidence as to whether the immune protein profile is associated with a particular symptomatology pattern across the psychosis continuum. METHODS: We estimated two bifactor models of general and specific dimensions of psychotic experiences in unaffected siblings of patients (n = 52) and community controls (n = 200), and of psychotic symptoms in first-episode psychosis (FEP) patients (n = 110). We evaluated associations between these transdiagnostic dimensions and trait (TNF-α, IFN-γ), state (IL-6, IL-1ß), and regulatory (TGF-ß, IL-10, IL-4) cytokines. We explored whether schizophrenia genetic liability (schizophrenia polygenic risk score; SZ-PRS) modified the associations. RESULTS: High levels of trait marker IFN-γ were associated with the severity of general psychosis dimension in the unaffected siblings and community controls, expanding to the depressive dimension in siblings and to the manic dimension in FEP. High TNF-α levels were associated with more positive psychotic experiences in unaffected siblings and manic symptoms in FEP. Low levels of state markers IL-6 and IL-1ß were observed in unaffected siblings presenting more depressive experiences. Still, high levels of IL-6 and IL-1ß were associated with the severity of the depressive and negative symptom dimensions at FEP. The severity of transdiagnostic dimension scores across the three groups was associated with lower regulatory cytokines. Exploratory analysis suggested that a high SZ-PRS contributed mostly to associations with psychotic dimensions. CONCLUSIONS: IFN-γ mapped onto the multidimensional expression of psychosis, reinforcing the trait concept. State markers IL-6 and IL-1ß may fluctuate along the spectrum. Dysfunction in the regulatory arm may disinhibit the inflammatory system. Associations with psychotic dimensions may be more prone to SZ-PRS susceptibility.

Psychopathological Risk in Siblings of Subjects with Attention-Deficit/Hyperactivity Disorder: A cross-Sectional Study.

OBJECTIVE: We aim to determine the prevalence of mental disorders in siblings of children with attention deficit hyperactivity disorder (ADHD), and to determine how psychosocial adversity factors relate to this psychopathology, in a low-middle income country (Colombia). METHODS: We evaluated subjects with ADHD diagnosed according to the DSM-5 criteria, one of their parents and one of their siblings (ages 8-19). We used the ADHD rating scale and a set of instruments to assess the presence of mental disorders as well as psychosocial adversity. RESULTS: We evaluated 74 trios formed by the index case with ADHD, one sibling and one of the parents. We found that 24.3% of the participating siblings also met the criteria for ADHD and another 24.3% for other psychiatric disorders. The risk of these siblings having ADHD increased further when one of the parents reported a history of ADHD. We also found that 28.3% of the families faced high levels of psychosocial adversity as per their scores in the Rutter Adversity Index. CONCLUSIONS: Siblings of subjects with ADHD showed a significant risk for ADHD and other mental disorders. That risk increased if a parent reported a history of ADHD and also when two or more psychosocial adversity factors were present. This study supports the importance of early detection in efforts to decrease the risk for other siblings.

Comparison of social isolation in autistic children and adolescents according to age, marital status and number of siblings.

BACKGROUND: Children and adolescents with autism spectrum disorder (ASD) have difficulties that limit their opportunities to interact with peers and family members. These behaviors can lead to social exclusion, and consequently social isolation. The aim was to compare social isolation of children and adolescents with ASD according to age, marital status, and number of siblings. MATERIALS AND METHODS: Cross-sectional descriptive study in 37 subjects with ASD. Social isolation was assessed using a 6-item scale (with five alternatives). The sociodemographic variables were age, sex, marital status of parents, and number of siblings. Two groups were formed according to age (children from 4 to 10 years old and adolescents from 11 to 20 years old). RESULTS: For the total score of the social isolation scale, children showed a higher score (21.1 ± 4.7) than adolescents (17.7 ± 5.7). Children living with divorced parents had lower scores (16.2 ± 3.6), compared to married (22.2 ± 4.5) and cohabiting (22.8) children. For the number of siblings, with no siblings 17.2 ± 3.1 points, one sibling 22.2 ± 3.5 points, two siblings 22.1 ± 3.1 points, and three siblings 22.4 ± 3.2 points (P < 0.05). Age was related to social isolation (r = -0.30, P < 0.05). CONCLUSION: Children who live with divorced parents and have no siblings presented a higher degree of isolation in relation to their counterparts who live with both parents and have at least one sibling. Age plays a relevant role, with children aged 4-10 years presenting a lower degree of isolation than the adolescent group. It is suggested that the preservation of a functional family and the presence of siblings could contribute to improving social isolation.

Considerações fenomenológicas sobre a percepção de si da criança/adolescente convivendo com irmão com deficiência / Phenomenological considerations regarding the self-perception of children/adolescents living with siblings with disabilities

Resumo O objetivo deste artigo é compreender a percepção de si de crianças/adolescentes que convivem com o irmão com deficiência. Pesquisa qualitativa, com abordagem hermenêutico-fenomenológica e participação de 20 crianças e adolescentes que convivem com o irmão com deficiência em um município do estado do Rio Grande do Sul, Brasil. Utilizou-se entrevista fenomenológica, diário de campo e interpretação hermenêutica. Evidenciaram-se lacunas de cuidado, necessidade de atenção, compreensão por parte da família, visto a atenção ser ao irmão com deficiência. O medo e a angústia da morte dos avós, da morte do irmão com deficiência, a saudade dos avós após sua morte. Percebe-se que essas crianças/adolescentes convivem e questionam o nascimento e a existência do irmão. Desvelou-se, ao dar luz ao mundo vivido da criança/adolescente, lacunas e fragilidades na relação com os pais, na atenção à saúde e nas situações de vulnerabilidades vivenciadas pela criança/adolescente e a família. Dessa forma, é necessário atenção a essa população, considerando que convivem com irmãos com deficiência e apresentam diversas vulnerabilidades que precisam ser discutidas, visando elaborações de estratégias de cuidado inclusivas e eficientes.

Abstract The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies.

Psychopathological Risk in Siblings of Subjects with Attention-Deficit/Hyperactivity Disorder: A cross-Sectional Study

Objective: We aim to determine the prevalence of mental disorders in siblings of children with attention deficit hyperactivity disorder (ADHD), and to determine how psychosocial adversity factors relate to this psychopathology, in a low-middle income country (Colombia). Methods: We evaluated subjects with ADHD diagnosed according to the DSM-5 criteria, one of their parents and one of their siblings (ages 8-19). We used the ADHD rating scale and a set of instruments to assess the presence of mental disorders as well as psychosocial adversity. Results: We evaluated 74 trios formed by the index case with ADHD, one sibling and one of the parents. We found that 24.3% of the participating siblings also met the criteria for ADHD and another 24.3% for other psychiatric disorders. The risk of these siblings having ADHD increased further when one of the parents reported a history of ADHD. We also found that 28.3% of the families faced high levels of psychosocial adversity as per their scores in the Rutter Adversity Index. Conclusions: Siblings of subjects with ADHD showed a significant risk for ADHD and other mental disorders. That risk increased if a parent reported a history of ADHD and also when two or more psychosocial adversity factors were present. This study supports the importance of early detection in efforts to decrease the risk for other siblings.

Objetivo: Nuestro objetivo es determinar la prevalencia de trastornos mentales en hermanos de casos con TDAH y cómo los factores de adversidad psicosocial se relacionan con esta psicopatología en un país de ingresos bajos-medios (Colombia). Métodos: Se evaluó a sujetos con TDAH diagnosticado según los criterios del DSM-5, uno de sus padres y uno de sus hermanos (edades, 8-19 anos). Mediante la escala de calificación del TDAH y un conjunto de otros instrumentos se evaluó la presencia de trastornos mentales y adversidad psicosocial. Resultados: Se evaluó a 74 tríos formados por el caso índice con TDAH, un hermano y uno de los padres. Se halló que un 24,3% de los hermanos participantes también cumplían los criterios de TDAH y otro 24,3%, otros trastornos psiquiátricos. El riesgo de que estos hermanos tuvieran TDAH aumentó aún más cuando uno de los padres informó antecedentes de TDAH. También, que el 28,3% de las familias se enfrentaron a altos niveles de adversidad psicosocial según sus puntuaciones en el Índice de Adversidad de Rutter. Conclusiones: Los hermanos de sujetos con TDAH mostraron un significativo riesgo de TDAH y otros trastornos mentales. Ese riesgo aumenta si uno de los padres reporta antecedentes de TDAH y también cuando se presentan 2 o más factores de adversidad psicosocial. Este estudio respalda la importancia de la detección temprana con el fin de disminuir el riesgo para otros hermanos.

Sibling Resemblance in Physical Activity Levels: The Peruvian Sibling Study on Growth and Health.

Physical activity is associated with a host of positive health outcomes and is shaped by both genetic and environmental factors. We aim to: (1) estimate sibling resemblance in two physical activity phenotypes [total number of steps∙day-1 and minutes for moderate steps per day (min∙day-1)]; and (2) investigate the joint associations of individual characteristics and shared natural environment with intra-pair sibling similarities in each phenotype. We sampled 247 biological siblings from 110 nuclear families, aged 6-17 years, from three Peruvian regions. Physical activity was measured using pedometers and body mass index was calculated. In general, non-significant variations in the intraclass correlation coefficients were found after adjustment for individual characteristics and geographical area for both phenotypes. Further, no significant differences were found between the three sib-ship types. Sister-sister pairs tended to take fewer steps than brother-brother (ß = -2908.75 ± 954.31). Older siblings tended to walk fewer steps (ß = -81.26 ± 19.83), whereas body mass index was not associated with physical activity. Siblings living at high-altitude and in the Amazon region had higher steps/day (ß = 2508.92 ± 737.94; ß = 2213.11 ± 776.63, respectively) compared with their peers living at sea-level. In general, we found no influence of sib-types, body mass index, and/or environment on the two physical activity phenotypes.

Patterns and predictors of inter-litter differences in rabbit pup locomotor activity, based on an automatized quantification method.

Individual-level sibling interactions in the litter huddle have been studied extensively, especially in the domestic rabbit (Oryctolagus cuniculus). However, little is known about inter-litter differences in pup activity patterns during early postnatal life, in particular regarding the drivers of such variation. In our study on 2-3-day-old rabbit pups, we predicted lower locomotor activity in litters with lower mean body masses on the day of birth (starting body mass) and with lower daily milk intake per pup, possibly constituting a behavioral strategy of pups to cope with associated energetic constraints. For an automatized assessment of pup locomotor activity in the litter huddle, we successfully developed and validated a method based on the quantification of dissimilarities between consecutive frames of video footage. Using this method, we could confirm a U-shaped time course of litter-level locomotor activity, with maximum values shortly before and after the once-daily nursing typical for the rabbit. As predicted, between-litter variation in mean starting body mass and in daily milk intake affected the degree of locomotor activity in the litter huddle, in an interactive way. That is, in litters with heavier starting body masses, pup locomotor activity was greater in pups with an initially higher milk intake, suggesting that only pups with better body condition and a higher energy intake could afford higher levels of activity. This interaction was exclusively apparent during the middle phase of the 24 h inter-nursing interval, when litter activity was low. Shortly before nursing, when pups show higher levels of locomotor behavior in anticipation of the mother's arrival, and shortly after nursing when the pups were more active possibly due to adjustments of their positions in the huddle, activity levels were decoupled from pups' starting body mass and previous milk intake. Our findings highlight the importance of pup body mass and daily energy intake, two parameters known to be related to maternal characteristics, in shaping inter-litter differences in pup locomotor activity.

Gender and family structures affecting intergenerational support from adult children to older parents: A cross-national study in a developing country.

In Latin America, informal support from adult children to their older parents ("upward support") is crucial with an aging population and insufficient coverage of social protection systems. This article examines variables associated with upward support, distinguishing by gender of parents and their children. The research design is quantitative, correlational, and cross-sectional. It is based on primary survey data collected by the authors for the study. The authors hypothesized that upward support depends on children's opportunities to provide support and on the needs of parents. The results show that upward support depends more on children's opportunities than on parents' needs, although upward support is higher for parents with poorer health. Daughters are more supportive than sons, but sibling characteristics do not moderate associations between children's gender and receipt of support. Cohabiting with the parent, receiving support from the parent, and having a good relationship were also associated with greater upward support. Therefore, policies should consider the gender of adult children when allocating resources to older people.

Experiences of siblings of children with chronic diseases revealed by the dramatic therapeutic play / Experiencias de hermanos de niños con enfermedades crónicas reveladas por eljuego terapéutico dramático / Vivências de irmãos de crianças com doenças crônicas reveladas pelo brinquedo terapêutico dramático

ABSTRACT Objective To understand, through dramatic therapeutic play, the experiences of siblings of children with chronic diseases. Method Phenomenological study, in the light of Heideggerian philosophical framework, conducted with 12 siblings of children with chronic diseases, aged between three and 11 years, accompanied in a public teaching hospital in the countryside of the state of São Paulo. The phenomenological interviews were audio-recorded and mediated by sessions of dramatic therapeutic play; later, interpreted from the Heideggerianphilosophical framework and thematic literature. Results The siblings demonstrated that they are affectively touched in the mode of sadness, longing and affection towards the sick child and, by the daily occupations imposed by the disease. Conclusion The dramatic therapeutic play enabled the siblings of children with chronic diseases to expose their experiences permeated by the limitations of the child's chronic disease. Instituting actions for the inclusion of the sibling during the nursing care of the child with chronic disease is urgent to improve its quality.

RESUMEN Objetivo Comprender, a través del juego dramático terapéutico, las experiencias de los hermanos de niños con enfermedades crónicas. Método Estudio fenomenológico, a la luz del referente filosófico heideggeriano, realizado con 12 hijos de niños con enfermedades crónicas, de edades comprendidas entre los tres y los 11 años, acompañados en el hospital público de enseñanza, en el interior del estado de São Paulo. Las entrevistas fenomenológicas fueron grabadas en audio y mediadas por sesiones de juego terapéutico dramático; luego, interpretada desde el marco filosófico heideggeriano y la literatura temática. Resultados Los hermanos demostraron que están tocados afectivamente en el modo de la tristeza, la añoranza y el afecto en relación con el niño enfermo y, por las ocupaciones diarias impuestas por la enfermedad. El brinco terapéutico dramático permitió que los hijos de los niños con enfermedades crónicas expusieran su vida a las limitaciones de la enfermedad crónica del niño. Conclusión Es urgente instituir medidas para la inclusión del hermano durante la asistencia de enfermera al niño con enfermedades crónicases urgente para mejorar su calidad.

RESUMO Objetivo Compreender por meio do brinquedo terapêutico dramático, vivências de irmãos de crianças com doenças crônicas. Método Estudo fenomenológico heideggeriano, realizado com 12 irmãos de crianças com doenças crônicas, com idades entre três e 11 anos, acompanhadas em hospital público de ensino, no interior do estado de São Paulo. As entrevistas fenomenológicas foram audiogravadas e mediadas por sessões de brinquedo terapêutico dramático; posteriormente, interpretadas a partir do referencial filosófico hedeggeriano e literatura temática. Resultados Os irmãos demonstraram que são tocados afetivamente no modo da tristeza, saudade e carinho em relação à criança doente e, pelas ocupações diárias impostas pela doença. Conclusão O brinquedo terapêutico dramático possibilitou que os irmãos de crianças com doenças crônicas expusessem suas vivências permeadas pelas limitações da doença crônica da criança. Instituir ações para a inclusão do irmão durante a assistência de enfermagem à criança com doença crônica faz-se urgente para melhoria da sua qualidade.

Mother and sibling interactions during the preweaning period influence myelination and impulse propagation of the sensory sural nerve in the adult rat.

To investigate whether mother and sibling interactions during the preweaning period influence the histological and electrophysiological characteristics of the sensory sural nerve (SUn) in the adult rat, litters composed of 1, 3, 6, 9, and 12 male pups (P) were formed and the pups routinely weighed until postnatal day 60 (PND60). At PND9, 3P and 6P litters showed greater body weight than pups without siblings or from 9P or 12P litters, and such differences in weight were maintained until adulthood. Analysis of maternal licking at PND8 and 9 showed that pups from large litters received fewer licks than pups from small size litters. At PND60, SUn of rats from 6P and 9P litters had greater compound action potential (CAP) amplitude and a higher proportion of axons with large myelin thickness than nerves from rats of 1P, 3P, or 12P litters. SUn of heaviest rats from 9P and 12P litters had greater CAP area and myelination than the lightest rats from the same litters. We propose that a complex interplay of sensory, social, and nutritional factors arising from mother and littermate interactions during the preweaning period influence myelination and the propagation of action potentials in the SUn of adult rats.

Sibling Resemblances in Physical Fitness in Three Distinct Regions in Peru: The Peruvian Sibling Study on Growth and Health.

We estimated sibling resemblance in health-related physical fitness (PF) and examined how individual characteristics and shared natural environment accounted for sibling similarities. The sample comprised 656 sibling pairs and 102 triplets (6-15 years of age), from three geographical areas of Peru. PF components included morphological (waist circumference, sum of skinfolds), muscular (handgrip strength, standing long jump), and motor (shuttle-run). Body mass index (BMI) and somatic maturation were also assessed. In general, sibling intraclass correlations differed significantly across sib-ship types for waist circumference and handgrip strength but were the same for sum of skinfolds, standing long jump, and shuttle-run. Further, in general, both individual characteristics and geographical area of residence significantly influenced the magnitude of sibling resemblance as well as the mean levels of PF. In conclusion, individual characteristics and shared natural environment jointly influenced the expression of PF in Peruvian siblings, revealing the importance of these features when designing individualized programs promoting fitness.

The Psychosocial Burden of Families with Childhood Blood Cancer.

Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers' spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.

Visita à criança hospitalizada em terapia intensiva: vivências de irmãos reveladas por meio do brinquedo terapêutico dramático / Visita al niño hospitalizado en terapia intensiva: vivencias de hermanos revelado por el juego terapéutico dramático / Visiting a hospitalized child in intensive care: experiences of siblings revealed through the dramatic therapeutic play

Resumo Objetivo: compreender, por meio do brinquedo terapêutico dramático, o significado, para o irmão, de visitar a criança hospitalizada em terapia intensiva. Método: pesquisa qualitativa, modalidade fenomenológica, que utilizou o brinquedo terapêutico dramático para acessar às experiências dos irmãos. Foi realizada em Unidade de Terapia Intensiva Pediátrica do interior do estado de São Paulo, Brasil. Participaram das sessões de brinquedo terapêutico 11 irmãos menores de 10 anos, as quais foram analisadas à luz da Teoria do Amadurecimento. Resultados: os irmãos, tendo um lugar para brincar, dramatizaram situações, anteriormente, vividas, de seu cotidiano e da visita à criança hospitalizada. Ao viver, criativamente, revelaram que brincar é fazer a integração das experiências do "eu", favorecendo o continuar a ser diante da situação vivida. Conclusões e implicações para a prática: o Brinquedo Terapêutico Dramático compreendido à luz de um referencial teórico possibilitou que o irmão significasse a visita como uma experiência de integração do "eu", revelando emoções, desejos e preferências do cotidiano. Nesse sentido, o cuidado ao irmão da criança hospitalizada define-se pela oferta do brincar livre, para que ele demonstre o sentimento de continuar a ser em suas interações com o mundo, no qual o contexto hospitalar tornou parte da realidade.

Resumen Objeto: Comprender por medio del juego terapéutico dramático el significado, para el hermano, de la visita al niño hospitalizado en Terapia Intensiva Pediátrica. Método: Investigación cualitativa, modalidad fenomenológica, que utilizó el juego terapéutico dramático para comprender la experiencia del hermano. Se realizó en Unidad de Terapia Intensiva Pediátrica del interior del Estado de São Paulo, Brasil. Participaron de las sesiones de juego terapéutico 11 hermanos con menos de 10 años, quienes fueron analizados a la luz de la Teoría de la Maduración. Resultados: Los hermanos, al tener un lugar para jugar, dramatizaron situaciones anteriormente vividas, de su cotidiano y de la visita al niño hospitalizado. Al vivir de forma creativa, revelaron que jugar es permitir la integración de las experiencias del "yo", lo que favorece el concepto de seguir siendo, ante la situación vivida. Conclusiones e implicaciones para la práctica: El Juego Terapéutico Dramático comprendido a la luz de un referencial teórico hizo posible que el hermano entendiera la visita como una experiencia de integración del "yo", revelando emociones, deseos y preferencias cotidianas. En este sentido, el cuidado del hermano del niño hospitalizado se define por la oferta de juego libre, para que pueda demostrar su sentimiento de seguir siendo en sus interacciones con el mundo, en el que el contexto hospitalario se ha convertido en parte de la realidad.

Abstract Objective: to understand, by means of dramatic therapeutic play, the meaning, for the sibling, of visiting the child hospitalized in intensive care. Method: a qualitative research, phenomenological modality, which used the dramatic therapeutic play to access the siblings' experiences. It was carried out in a Pediatric Intensive Care Unit in the countryside of the State of São Paulo, Brazil. Eleven siblings under ten years of age participated in the therapeutic play sessions, which were analyzed in the light of the Theory of Maturation. Results: the siblings, having a place to play, dramatized previously lived situations, from their daily life and from the visit to the hospitalized child. By living creatively, they revealed that playing is to integrate the experiences of the "I", favoring the continuity of being in the face of the situation lived. Conclusions and implications for practice: the Dramatic Therapeutic Play understood in the light of a theoretical framework allowed the sibling to mean the visit as an experience of integration of the "I", revealing emotions, desires and preferences of daily life. In this sense, the care for the brother of the hospitalized child is defined by the offer of free play, so that he demonstrates the feeling of continuing to be in his interactions with the world, in which the hospital context has become part of reality.

Jovens com transtorno autista, suas mães e irmãos: vivências familiares e modelo bioecológico / Young people with autistic disorder, their mothers and siblings: family experiences and bioecological model

Resumo No modelo bioecológico, compreende-se o desenvolvimento a partir da interação entre o sujeito e os múltiplos contextos nos quais está inserido, considerando a dimensão temporal. Nessa direção, por meio de um estudo descritivo, objetivou-se analisar as concepções de jovens com transtorno autista, suas mães e seus irmãos acerca de suas vivências familiares. Para tanto, foram realizadas entrevistas com 12 mães, 17 irmãos e 2 jovens com autismo, sendo transcritas e analisadas a partir da técnica de análise de conteúdo. Os resultados evidenciaram que as atividades, a rede de apoio e as concepções descritas pelos participantes funcionam como fatores protetivos, mesmo diante de fatores de risco em seu desenvolvimento. O presente estudo suscita novas questões de pesquisa e elucida aspectos das vivências familiares importantes para delinear intervenções.

Abstract In the bioecological model, development is understood as the interaction between the subject and the multiple contexts in which it is inserted, taking into consideration the temporal dimension. In this direction, through a descriptive study, it was aimed to analyze the conceptions of young people with autism, their mothers and siblings about their family experiences. For that, interviews were conducted with 12 mothers, 17 siblings and 2 youngsters with autism, being transcribed and analyzed using the content analysis technique. The results have showed that the activities, support networks and conceptions described by the participants work as protective factors, even in the face of risk factors in their development. The present study raises new research questions and elucidates aspects of family experiences that are important to delineate interventions.

"He is normal": phenomenological considerations of child/adolescent's perception of the disabled sibling / "Él es normal": consideraciones fenomenológicas de la percepción del niño/adolescente del hermano con discapacidad / "Ele é normal": considerações fenomenológicas da percepção da criança/adolescente do irmão com deficiência

ABSTRACT Objective: To understand the child/adolescent's perception of the disabled sibling. Method: Qualitative research, with a phenomenological approach, conducted between 2018 and 2019, in a municipality in the south of Brazil, with 20 children/adolescents who are siblings of people with disabilities, through a phenomenological interview. Respecting ethical precepts, hermeneutics was used for interpretation. Results: The child/adolescent perceives his/her disabled sibling as a normal person, given his/her behavior, way of being and intellectual capacity. Still, it understands him as a special being, who has limitations regarding learning, but does not see him as different, thus, unlinks the idea of disability associated with the disease/abnormality. Final considerations: The perception of the disabled sibling occurs within the perception of normality. The child identifies his sibling's lower learning capacitor a way that is unique to him, a fact that does not condition him to be seen as abnormal, defining his being-in-the-world as a special way of existing.

RESUMEN Objetivo: Comprender la percepción del niño/adolescente sobre el hermano con discapacidad. Método: Investigación cualitativa con enfoque fenomenológico, desarrollada, entre 2018 y 2019, en un municipio del sur de Brasil, con 20 niños/adolescentes hermanos de personas con discapacidad, a través de entrevista fenomenológica. Respetando los preceptos éticos. Para la interpretación se utilizó la hermenéutica. Resultados: El niño/adolescente percibe a su hermano discapacitado como una persona normal, dado su comportamiento, forma de ser y capacidad intelectual. Aun así, lo entiende como un ser especial, que tiene limitaciones en aprendizaje, pero no lo ve como diferente, desvinculando así la idea de discapacidad asociada a la enfermedad/anormalidad. Consideraciones finales: La percepción del hermano discapacitado se da dentro de la percepción de normalidad. El niño identifica la menor capacidad de aprender del hermano o una forma que le es propia, hecho que no lo condiciona a ser visto como anormal, definiendo su ser-en-el-mundo como una forma especial de existir.

RESUMO Objetivo: Compreender a percepção da criança/adolescente sobre o irmão com deficiência. Método: Pesquisa qualitativa com abordagem fenomenológica, desenvolvida entre 2018 e 2019,em um município ao sul do Brasil, com 20crianças/adolescentes irmãos de pessoas com deficiência, mediante entrevista fenomenológica.Respeitados os preceitos éticos, utilizou-se a hermenêutica para interpretação. Resultados: A criança/adolescente percebe seu irmão com deficiência como uma pessoa normal, diante de seu comportamento, modo de ser e capacidade intelectual. Ainda, o entende como um ser especial, que possui limitações em relação à aprendizagem, porém não o vê como diferente, desvinculando a ideia da deficiência associada à doença/anormalidade. Considerações finais: A percepção sobre o irmão com deficiência ocorre dentro da perceptiva de normalidade. A criança identifica a menor capacidade de aprendizagem do irmão ou um jeito que é só dele, fato que não o condiciona a ser visto como anormal, definindo seu ser-no-mundo como um modo especial de existir.