Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings

 Purpose: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings. Method: Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data. Results: Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs. Conclusions: The life course approach indicated that siblings' growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other.Implications for RehabilitationAs adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support.Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for example, by supporting geographically distant siblings to keep in touch.Service providers have a role in supporting the person with a disability and their siblings to make plans for the future. © 2014 Informa UK Ltd.

Translation, cultural adaptation to Brazil and validation of the venous leg ulcer quality of life questionnaire (VLU-QoL-Br)

Objetivo:traduzir o instrumento Venous legulcer quality of life questionnaire (VLU-QoL), adaptá-lo culturalmente para o português do Brasil e validá-lo com pacientes do Hospital das Clínicas da Faculdade de Medicina de Botucatu (FMB) da Universidade Estadual Paulista (Unesp). Métodos:o questionário foi traduzido por um tradutor profissional e por dois dermatologistas especialistas na área de úlceras venosas (UV), sendo reformulado em reunião com os três tradutores. O constructo (VLU-QoL-Br) foi submetido a pré-entrevista com 10 portadores de UV para a adaptação da linguagem. Posteriormente, foi aplicado em pacientes do HC-Unesp, e como teste-reteste para verificação de sua reprodutibilidade. Resultados:foram avaliados 82 pacientes, sendo 56 (68%) do sexo feminino. A idade média foi de 67,3 anos. O questionário foi traduzido, adaptado e aplicado aos pacientes. O constructo apresentou alta consistência interna (alfa= 0,94) e adequada correlação item-total. Quando avaliados os 32 retestes, observou-se correlação intraclasse para concordância de 0,78 (p < 0,01), indicando boa reprodutibilidade do constructo. A análise fatorial confirmatória corroborou as dimensões do questionário original: atividades, psicológico e sintomas. Escores do VLU-QoL-Br se associaram, independentemente, à área total das úlceras e a menor escolaridade dos sujeitos (p < 0,01). Conclusão:a tradução, a adaptação e a validação do questionário VLU-Qol-Br demonstrou boa performance psicométrica, permitindo seu uso clínico no Brasil. É importante avaliar seu desempenho em outras regiões e em diferentes amostras de indivíduos.

Construindo laços entre o serviço social e a educação: acesso e permanência na educação de jovens e adultos

Pós-graduação em Serviço Social - FCHS

Drug addictions and sexual violence in childhood and adolescence: analyzing life stories

The sexual abuse suffered in childhood and adolescence, in addition to damage to physical and psychological health of the victim, is considered as an important risk factor for alcohol and drugs addiction, development of psychopathology and psychosocial damage in adulthood. In addition to the pain and humiliation that are submitted by the abuse, children and adolescents also experience shame and guilt which require them to adopt coping strategies to endure those feelings. The use of psychoactive substances is a recognized way of dealing with the pains of living. This work, which is of narrative style, analyses and discusses, through five case reports, chemical dependency as a result of sexual abuse suffered in childhood and/or adolescence. The eight subjects in this study are male and have suffered sexual violence in this age period of life. Their ages range from 23 years to 39 years, and all are admitted to a therapeutic community in a city in the interior of Sao Paulo state, in Brazil, for treatment of chemical dependency, being met by the Department of Psychology. The reasons for the choice of the participants for treatment modality for patients are: difficult to stop using drugs, even unwilling to take it, they have easy access to it; the feeling of losing control over their lives; by successive losses as a result of drug use, and for fear that their lives had a tragic ending. With the exception of two participants, the others do not classify that as a child suffered sexual violence. However, all attribute that facilitated their entry into the world of drugs. Seven participants experienced such violence in childhood (between 7 years and 9 years) and adolescence (age 14). The attackers were people closed to the victims—in the case of two victims, their families, with the exception of one participant who was raped by a stranger. Six participants declared themselves as homosexual. Another participant does not claim to be homosexual, but presents difficulties in terms of sexuality. Two participants are HIV positive. The start of psychoactive substances use occurred during adolescence (12 years to 17 years). The participants see drugs as an anesthetic to the pain of the soul, a way to get pleasure, but they get charged expensively, as it increases the feeling of emptiness, guilt, helplessness, worthlessness and hopelessness. Although participants have sought help to deal with addiction, it is noted that throughout the life course the issue of sexual violence was not treated. It was noted that the patients have a double stigma in society: the issue of drugs addiction and the orientation of sexual desire, because the majority of participants are homosexual. The results reinforce the need for effective action geared to accommodate the victims of sexual violence and effective preventive measures to prevent children and adolescents from being abused.

Children’s Play in Cross-Cultural Perspective: A New Look at the Six Cultures Study

A qualitative and quantitative reanalysis of the Six Cultures data on children’s play, collected in the 1950s, was performed to revisit worlds of childhood during a time when sample communities were more isolated from mass markets and media than they are today. A count was performed of children aged 3 to 10 in each community sample scored as engaging in creative-constructive play, fantasy play, role play, and games with rules. Children from Nyansongo and Khalapur scored lowest overall, those from Tarong and Juxtlahuaca scored intermediate, and those from Taira and Orchard Town scored highest. Cultural norms and opportunities determined how the kinds of play were stimulated by the physical and social environments (e.g., whether adults encouraged work versus play, whether children had freedom for exploration and motivation to practice adult roles through play, and whether the environment provided easy access to models and materials for creative and constructive play).

Integrating Visual and Verbal Literacies in the Early Childhood Classroom

Young children have the strong desire to use all of the communicative tools their cultures and families offer them. They want to be able to do all of the things that the powerful people they admire can do, including talking, writing, drawing, using the computer, and otherwise creating and sharing ideas, memories, solutions, even jokes and feelings. Today, we live in a time when the communicative tools are changing rapidly, practically exploding before our eyes in terms of the formats and media available to us in complex combinations not seen before. What do these technological changes mean for how we can support children's development toward literacy? An integrated arts curriculum has long been favored by many educators, but today there are more reasons than ever to implement such a philosophy. From communications theory comes a new understanding of how modern technologies demand that children learn to "read" and "write" messages involving complex combinations and integrations of visual and verbal formats. From psychology come insights about intelligence being multiple not unitary, as well as ecological perception theory offering a well-accepted framework for analyzing the affordances and expressive possibilities of different media. From education come fresh approaches to integrated curriculum, including a philosophy and pedagogy from Reggio Emilia, Italy, that combines well with current thinking by North Americans. Altogether, we have many rationales and exciting strategies at hand for launching young children toward an integrated visual and verbal literacy that involves substance, challenge, and discipline, as well as innovation, creativity, and freedom.

Review of Vivian Gussin Paley, You Can't Say You Can't Play

You Can't Say You Can't Play recounts a teacher's attempts to undo the habit of exclusion in her kindergarten classroom. In this case, the exclusion that has come to concern her is that which arises when certain children are consistently rejected from entering the other children's play.

Showing that Early Childhood Education Works: Lessons from Italy, China, and the USA

Lessons from around the world; What does it matter about early childhood education? Why the controversy about public support for early childhood education? What process or system should be used to determine what works in early education? Can the same process be used to improve services? What is the role of government? Alternatives: 1. Consumers should determine… (What happens when private choices drive the market for early childhood services?) Observed quality of care in four Midwestern states; Parent data: “All things considered, how would you grade the quality of the care your child is receiving from his/her current caregiver?” Role of government What is a Quality Rating System? Ten states have implemented statewide systems (e.g. Colorado, Kentucky, Oklahoma, North Carolina) Findings 2. Objective science should determine… Firm findings from empirical research 3. Something else is needed: Some differences between Italian and American models. Teacher action research (and documentation) from a Reggio-inspired preschool in South Korea by Misuk Kim. Teacher Action Research at the Ruth Staples CDL. Can we now answer our opening questions? What process or system should be used to determine what is best for young children? Can the same process be used to improve the quality of services? Conclusions: The free market does not work well to determine quality in early education and care; Licensing, accreditation, and quality rating systems can help improve the market; Empirical research is useful for measuring what works; Teacher action research (reflective practice) is necessary for fostering continuous quality improvement. The tower of quality.

Parental Ethnotheories of Child Development: Looking Beyond Independence and Individualism in American Belief Systems

Over the past several decades, the topic of child development in a cultural context has received a great deal of theoretical and empirical investigation. Investigators from the fields of indigenous and cultural psychology have argued that childhood is socially and historically constructed, rather than a universal process with a standard sequence of developmental stages or descriptions. As a result, many psychologists have become doubtful that any stage theory of cognitive or socialemotional development can be found to be valid for all times and places. In placing more theoretical emphasis on contextual processes, they define culture as a complex system of common symbolic action patterns (or scripts) built up through everyday human social interaction by means of which individuals create common meanings and in terms of which they organize experience. Researchers understand culture to be organized and coherent, but not homogenous or static, and realize that the complex dynamic system of culture constantly undergoes transformation as participants (adults and children) negotiate and re-negotiate meanings through social interaction. These negotiations and transactions give rise to unceasing heterogeneity and variability in how different individuals and groups of individuals interpret values and meanings. However, while many psychologists—both inside and outside the fields of indigenous and cultural psychology–are now willing to give up the idea of a universal path of child development and a universal story of parenting, they have not necessarily foreclosed on the possibility of discovering and describing some universal processes that underlie socialization and development-in-context. The roots of such universalities would lie in the biological aspects of child development, in the evolutionary processes of adaptation, and in the unique symbolic and problem-solving capacities of the human organism as a culture-bearing species. For instance, according to functionalist psychological anthropologists, shared (cultural) processes surround the developing child and promote in the long view the survival of families and groups if they are to demonstrate continuity in the face of ecological change and resource competition, (e.g. Edwards & Whiting, 2004; Gallimore, Goldenberg, & Weisner, 1993; LeVine, Dixon, LeVine, Richman, Leiderman, Keefer, & Brazelton, 1994; LeVine, Miller, & West, 1988; Weisner, 1996, 2002; Whiting & Edwards, 1988; Whiting & Whiting, 1980). As LeVine and colleagues (1994) state: A population tends to share an environment, symbol systems for encoding it, and organizations and codes of conduct for adapting to it (emphasis added). It is through the enactment of these population-specific codes of conduct in locally organized practices that human adaptation occurs. Human adaptation, in other words, is largely attributable to the operation of specific social organizations (e.g. families, communities, empires) following culturally prescribed scripts (normative models) in subsistence, reproduction, and other domains [communication and social regulation]. (p. 12) It follows, then, that in seeking to understand child development in a cultural context, psychologists need to support collaborative and interdisciplinary developmental science that crosses international borders. Such research can advance cross-cultural psychology, cultural psychology, and indigenous psychology, understood as three sub-disciplines composed of scientists who frequently communicate and debate with one another and mutually inform one another’s research programs. For example, to turn to parental belief systems, the particular topic of this chapter, it is clear that collaborative international studies are needed to support the goal of crosscultural psychologists for findings that go beyond simply describing cultural differences in parental beliefs. Comparative researchers need to shed light on whether parental beliefs are (or are not) systematically related to differences in child outcomes; and they need meta-analyses and reviews to explore between- and within-culture variations in parental beliefs, with a focus on issues of social change (Saraswathi, 2000). Likewise, collaborative research programs can foster the goals of indigenous psychology and cultural psychology and lay out valid descriptions of individual development in their particular cultural contexts and the processes, principles, and critical concepts needed for defining, analyzing, and predicting outcomes of child development-in-context. The project described in this chapter is based on an approach that integrates elements of comparative methodology to serve the aim of describing particular scenarios of child development in unique contexts. The research team of cultural insiders and outsiders allows for a look at American belief systems based on a dialogue of multiple perspectives.

Collaboration as a Foundation for the Project Approach in Family Child Care

Supporting children's curiosity was considered important at my family child care home. How could we best achieve this? As my assistant caregiver Deb and 1 attended professional development workshops, we began to wonder if the project approach (Helm & Katz 2001) would be an effective means of supporting inquiry and collaborative learning. Before we would commit ourselves, we wanted to learn more. We had many questions. Just what is the project approach? What does it look like? How will it support children's learning? What do we need to be successful with it? The literature suggested many examples of successful projects at child care centers and preschools (Breig-Allen et al. 1998; Harkem: 1999; Beneke 2000; Glassman & Whaley 2000). Our challenge was how to adapt the project approach to our home child care situations.

A Culture of Relationships: Early Care for Italian and American Children

A culture of childhood is a shared vision – an agreed upon vision – of the needs and rights of children, including ideas about how the people of the community can collectively nurture them and at the same time be renewed by them. In other words, it is a set of values, beliefs, and practices that people have created to guide their way of nurturing young children and their families. The vision is about investing in young children and investing in the supports and relationships that children need to learn and grow, both for the reason that children carry our future and because they carry our hopes and dreams for the future. These hopes and dreams begin with birth. Sensitive, emotionally available parents create the framework for interaction with their children by responding to the baby’s cues, engaging the baby in mutual gazes, and imitating the baby. The baby, born with a primary ability to share emotions with other human beings eagerly joins the relationship dance. The intimate family circle soon widens. Providers, teachers, and directors of early childhood programs become significant figures in children’s lives—implicit or explicit partners in a "relationship dance" (Edwards & Raikes, 2002). These close relationships are believed to be critical to healthy intellectual, emotional, social, and physical development in childhood and adolescence as well. These conclusions have been documented by diverse fields of science, ranging from cognitive science to communication studies and social and personality psychology. Close relationships contribute to security and trust, promote skill development and understanding, nurture healthy physical growth, infuse developing self-understanding and self-confidence, enable self-control and emotion regulation, and strengthen emotional connections with others that contribute to prosocial motivation (Dunn, 1993; Fogel, 1993; Thompson, 1996). Furthermore, many studies showing how relationship dysfunction is linked to child abuse and neglect, aggression, criminality, and other problems involving the lack of significant human connections (Shankoff & Meisels, 2000). In extending the dance of primary relationships to new relationships, a childcare teacher can play a primary role. The teacher makes the space ready--creating a beautiful place that causes everyone to feel like dancing. Gradually, as the dance between them becomes smooth and familiar, the teacher encourages the baby to try out more complex steps and learn how to dance to new compositions, beats, and tempos. As the baby alternates dancing sometimes with one or two partners, sometimes with many, the dance itself becomes a story about who the child has been and who the child is becoming, a reciprocal self created through close relationships.

Evidence-based guidelines for interpreting change scores for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30

Aim: To use published literature and experts' opinion to investigate the clinical meaning and magnitude of changes in the Quality of Life (QOL) of groups of patients measured with the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Methods: An innovative method combining systematic review of published studies, expert opinions and meta-analysis was used to estimate large, medium, and small mean changes over time for QLQ-C30 scores. Results: Nine hundred and eleven papers were identified, leading to 118 relevant papers. One thousand two hundred and thirty two mean changes in QOL over time were combined in the meta-analysis, with timescales ranging from four days to five years. Guidelines were produced for trivial, small, and medium size classes, for each subscale and for improving and declining scores separately. Estimates for improvements were smaller than respective estimates for declines. Conclusions: These guidelines can be used to aid sample size calculations and interpretation of mean changes over time from groups of patients. Observed mean changes in the QLQ-C30 scores are generally small in most clinical situations, possibly due to response shift. Careful consideration is needed when planning studies where QOL changes over time are of primary interest; the timing of follow up, sample attrition, direction of QOL changes, and subscales of primary interest are key considerations. (C) 2012 Elsevier Ltd. All rights reserved.

Evaluation of quality of life in a palliative care context: an integrative literature review

The use of scales that have been validated and standardized for different cultures is very useful for identifying demands in the field of Palliative Care and implementing the most appropriate care. This integrative literature review focuses on instruments assessing the Quality of Life of patients under Palliative Care through a journal search in electronic databases. The study consisted of 49 papers identified in Medline/PubMed, of which 18 met the inclusion criteria previously defined. Information concerning the selected studies is presented and later categorized, with a greater emphasis on the analysis of the psychometric properties of validations of the Palliative Outcome Scale, conducted in three countries. This review enabled the identification of instruments already developed and validated for different cultures, increasing the possibility of knowledge in the field.

Prioritization of Potential Mates' History of Sexual Fidelity During a Conjoint Ranking Task

This series of studies is the first to use conjoint analysis to examine how individuals make trade-offs during mate selection when provided information about a partner's history of sexual infidelity. Across three studies, participants ranked profiles of potential mates, with each profile varying across five attributes: financial stability, physical attractiveness, sexual fidelity, emotional investment, and similarity. They also rated each attribute separately for importance in an ideal mate. Overall, we found that for a long-term mate, participants prioritized a potential partner's history of sexual fidelity over other attributes when profiles were ranked conjointly. For a short-term mate, sexual fidelity, physical attractiveness, and financial stability were equally important, and each was more important than emotional investment and similarity. These patterns contrast with participants' self-reported importance ratings of each individual attribute. Our results are interpreted within the context of previous literature examining how making trade-offs affect mate selection.

Inhibition of matrix metalloproteinases and tumour necrosis factor alpha converting enzyme as adjuvant therapy in pneumococcal meningitis

Matrix metalloproteinases (MMPs) and tumour necrosis factor alpha (TNF-alpha) converting enzyme (TACE) contribute synergistically to the pathophysiology of bacterial meningitis. TACE proteolytically releases several cell-surface proteins, including the proinflammatory cytokine TNF-alpha and its receptors. TNF-alpha in turn stimulates cells to produce active MMPs, which facilitate leucocyte extravasation and brain oedema by degradation of extracellular matrix components. In the present time-course studies of pneumococcal meningitis in infant rats, MMP-8 and -9 were 100- to 1000-fold transcriptionally upregulated, both in CSF cells and in brain tissue. Concentrations of TNF-alpha and MMP-9 in CSF peaked 12 h after infection and were closely correlated. Treatment with BB-1101 (15 mg/kg subcutaneously, twice daily), a hydroxamic acid-based inhibitor of MMP and TACE, downregulated the CSF concentration of TNF-alpha and decreased the incidences of seizures and mortality. Therapy with BB-1101, together with antibiotics, attenuated neuronal necrosis in the cortex and apoptosis in the hippocampus when given as a pretreatment at the time of infection and also when administration was started 18 h after infection. Functionally, the neuroprotective effect of BB-1101 preserved learning performance of rats assessed 3 weeks after the disease had been cured. Thus, combined inhibition of MMP and TACE offers a novel therapeutic strategy to prevent brain injury and neurological sequelae in bacterial meningitis.