Family adaptation and perception of stress in parents of children with hemophilia. Possible factor influencing adherence

SIN FINANCIACIÓN

Best practice principles for management of children with developmental coordination disorder (DCD) : results of a scoping review

Background. Developmental coordination disorder (DCD) is a prevalent health condition that is frequently unrecognized despite the substantial evidence that has accumulated regarding how it affects children���s health, education and skills.Most literature focuses on measurement of impairment and description of intervention approaches for individual children; little is known about the principles that should guide best practice and service delivery for children with DCD as a population. The purpose of this study was to identify these principles. Methods. A scoping review was used to ‘map’ the information available to inform intervention and service delivery. Scholarly and grey literature written in English was identified in six databases, using a combination of keywords (e.g. guidelines, management, models and DCD); a ‘snow-balling’ technique was also used in Canada and the UK to access clinical protocols used in publicly funded health care systems. Over 500 documents were screened: 31 met inclusion criteria as they outlined practice principles for children with DCD as a population. Data regarding best practices were independently extracted by two reviewers and then compared with achieve consistency and consensus. Results. Two over-arching themes emerged, with five principles: (1) Organizing services to efficiently meet the comprehensive needs of children (e.g. Increasing awareness of DCD and coordination; Implementing clearly defined pathways; Using a graduated/staged approach); (2) Working collaboratively to offer evidence-based services (e.g. Integration of child and family views; Evidence-based interventions fostering function, participation and prevention). Conclusion Numerous documents support each of the principles, reflecting agreement across studies about recommended organization of services.While these principles may apply to many populations of children with disabilities, this review highlights how essential these principles are in DCD. Researchers, managers, clinicians, community partners and families are encouraged to work together in designing, implementing and evaluating interventions that reflect these principles.

Transportation of Children in Ground Ambulances: Professionals' Knowledge and Safety Measures

Background: The transport of children in ground ambulances is a rarely studied topic worldwide. The ambulance vehicle is a unique and complex environment with particular challenges for the safe, correct and effective transportation of patients. Unlike the well developed and readily available guidelines on the safe transportation of a child in motor vehicles, there is a lack on consistent specifications for transporting children in ambulances. Nurses are called daily to transfer children to hospitals or other care centers, so safe transport practices should be a major concern. Purpose: to know which are the safety precautions and specific measures used in the transport of children in ground ambulances by nurses and firefighters and to identify what knowledge these professionals had about safe modes of children transportation in ground ambulances. Methods: In this context, an exploratory - descriptive study and quantitative analysis was conducted. A questionnaire was completed by 135 nurses and firefighters / ambulance crew based on 4 possible children transport scenarios proposed by the NHTSA (National Highway Traffic Safety Administration) and covered 5 different children��s age groups (new born children, 1 to 12 months; 1 to 3 years old; 4 to 7 years old and 8 to 12 years old). Results: The main results showed a variety of safety measures used by the professionals and a significant difference between their actual mode of transportation and the mode they consider to be the ideal considering security goals. In addition, findings showed that achieved scores related to what ambulance crews do in the considered scenarios reflect mostly satisfactory levels of transportation rather than optimum levels of safety, according to NHTSA recommendations. Variables as gender, educational qualifications, occupational group and local where professionals work seem to influence the transport options. Female professionals and nurses from pediatric units appear to do a safer transportation of children in ground ambulances than other professionals. Conclusion: Several professionals refereed unawareness of the safest transportation options for children in ambulances and did not to know the existence of specific recommendations for this type of transportation. The dispersion of the results suggests the need for investment in professional training and further regulation for this type of transportation.

Transportation of Children In Ground Ambulances: Professionals' Knowledge and Safety Measures.

Summary The transport of children in ground ambulances is a rarely studied topic worldwide. The ambulance vehicle is a unique environment with particular challenges for the safe, correct and effective transportation of patients. Unlike the well developed and available guidelines on the transportation of children in motor vehicles, there is a lack on specifications for transporting children in ambulances. Nurses are called daily to transfer children to hospitals or other care centres, so safe transport practices should be a major concern. Methods An exploratory - descriptive study and quantitative analysis was conducted. The safety measures used by the professionals in the transportation of children in ambulances were analysed based on the NHTSA (National Highway Traffic Safety Administration) recommendations. A questionnaire was applied to 135 nurses and firefighters/crew of Portuguese ambulances using 4 possible transport situations and covering 5 paediatric age groups. Results There are a variety of safety measures used by professionals and a significant difference between actual mode of transportation and the mode they consider to be the ideal. In addition, findings showed that scores related to what ambulance crews do in these scenarios reflect most satisfactory levels of transportation rather than the optimum levels, according to NHTSA recommendations. Variables as gender, educational qualifications, occupational group and local where professionals work seem to influence the transport options. Female professionals and pediatric nurses do a safer transportation of children in ambulances than other professionals. Conclusion The results suggest the need for investment in professional training and further regulation for this type of transportation.

Parenting and the behavior problems of young children with an intellectual disability: Concurrent and longitudinal relationships in a population-based study

We examined parenting behaviors, and their association with concurrent and later child behavior problems. Children with an intellectual disability (ID) were identified from a UK birth cohort (N  =  516 at age 5). Compared to parents of children without an ID, parents of children with an ID used discipline less frequently, but reported a more negative relationship with their child. Among children with an ID, discipline, and home atmosphere had no long-term association with behavior problems, whereas relationship quality did: closer relationships were associated with fewer concurrent and later child behavior problems. Increased parent-child conflict was associated with greater concurrent and later behavior problems. Parenting programs in ID could target parent-child relationship quality as a potential mediator of behavioral improvements in children.

The relationship of loneliness and social anxiety with children's and adolescents' online communication

Children and adolescents are now using online communication to form and/or maintain relationships with strangers and/or friends. Relationships in real life are important for children and adolescents in identity formation and general development. However, social relationships can be difficult for those who experience feelings of loneliness and social anxiety. The current study aimed to replicate and extend research conducted by Valkenburg and Peter (2007b), by investigating differences in online communication patterns between children and adolescents with and without selfreported loneliness and social anxiety. Six hundred and twenty-six students aged 10-16 years completed a questionnaire survey about the amount of time they engaged in online communication, the topics they discussed, who they communicated with, and their purposes of online communication. Following Valkenburg and Peter (2007b), loneliness was measured with a shortened version of the UCLA Loneliness Scale (Version 3) developed by Russell (1996), whereas social anxiety was assessed with a sub-scale of the Social Anxiety Scale for Adolescents (La Greca & Lopez, 1998). The sample was divided into four groups of children and adolescents: 220 were “non-socially anxious and non-lonely”, 139 were “socially anxious but not lonely”, 107 were “lonely but not socially anxious”, and 159 were “lonely and socially anxious”. A one-way ANOVA and chi-square tests were conducted to evaluate the aforementioned differences between these groups. The results indicated that children and adolescents who reported being lonely used online communication differently from those who did not report being lonely. Essentially, the former communicated online more frequently about personal things and intimate topics, but also to compensate for their weak social skills and to meet new people. Further analyses on gender differences within lonely children and adolescents revealed that boys and girls communicated online more frequently with different partners. It was concluded that for these vulnerable individuals online communication may fulfil needs of self-disclosure, identity exploration, and social interactions. However, future longitudinal studies combining a quantitative with a qualitative approach would better address the relationship between Internet use and psychosocial well-being. The findings also suggested the need for further exploration of how such troubled children and adolescents can use the Internet beneficially.

“Just try harder and you will shine” : a Study of 20 lazy children

Attributions of laziness, reflected in teacher comments such as “just try harder and you will shine” may mask specific cognitive, learning, attentional or emotional problems that could explain low motivation in some children. This paper reports findings from an investigation of 20 children, aged 7 to 10 years, who were regarded as lazy by their parents and teachers. Questionnaire measures provided evidence of low levels of motivation and classroom engagement. Psychometric assessments revealed the presence of a range of difficulties including phonologically-based learning disabilities and significant problems with attention in 17 of the 20 children. The paper concludes that the special needs of an unknown number of children may be overlooked because they are simply presumed to be lazy.

Effect of amblyopia on the developmental eye movement test in children

Purpose. To investigate the functional impact of amblyopia in children, the performance of amblyopic and age-matched control children on a clinical test of eye movements was compared. The influence of visual factors on test outcome measures was explored. Methods. Eye movements were assessed with the Developmental Eye Movement (DEM) test, in a group of children with amblyopia (n = 39; age, 9.1 ± 0.9 years) of different causes (infantile esotropia, n = 7; acquired strabismus, n = 10; anisometropia, n = 8; mixed, n = 8; deprivation, n = 6) and in an age-matched control group (n = 42; age, 9.3 ± 0.4 years). LogMAR visual acuity (VA), stereoacuity, and refractive error were also recorded in both groups. Results. No significant difference was found between the amblyopic and age-matched control group for any of the outcome measures of the DEM (vertical time, horizontal time, number of errors and ratio(horizontal time/vertical time)). The DEM measures were not significantly related to VA in either eye, level of binocular function (stereoacuity), history of strabismus, or refractive error. Conclusions. The performance of amblyopic children on the DEM, a commonly used clinical measure of eye movements, has not previously been reported. Under habitual binocular viewing conditions, amblyopia has no effect on DEM outcome scores despite significant impairment of binocular vision and decreased VA in both the better and worse eye.

The effect of Amblyopia on motor and psychosocial skills in children

Background/Aims: In an investigation of the functional impact of amblyopia on children, the fine motor skills, perceived self-esteem and eye movements of amblyopic children were compared with that of age-matched controls. The influence of amblyogenic condition or treatment factors that might predict any decrement in outcome measures was investigated. The relationship between indirect measures of eye movements that are used clinically and eye movement characteristics recorded during reading was examined and the relevance of proficiency in fine motor skills to performance on standardised educational tests was explored in a sub-group of the control children. Methods: Children with amblyopia (n=82; age 8.2 ± 1.3 years) from differing causes (infantile esotropia n=17, acquired strabismus n=28, anisometropia n=15, mixed n=13 and deprivation n=9), and a control group of children (n=106; age 9.5 ± 1.2 years) participated in this study. Measures of visual function included monocular logMAR visual acuity (VA) and stereopsis assessed with the Randot Preschool Stereoacuity test, while fine motor skills were measured using the Visual-Motor Control (VMC) and Upper Limb Speed and Dexterity (ULSD) subtests of the Brunicks-Oseretsky Test of Motor Proficiency. Perceived self esteem was assessed for those children from grade 3 school level with the Harter Self Perception Profile for Children and for those in younger grades (preschool to grade 2) with the Pictorial Scale of Perceived Competence and Acceptance for Young Children. A clinical measure of eye movements was made with the Developmental Eye Movement (DEM) test for those children aged eight years and above. For appropriate case-control comparison of data, the results from amblyopic children were compared with age-matched sub-samples drawn from the group of children with normal vision who completed the tests. Eye movements during reading for comprehension were recorded by the Visagraph infra-red recording system and results of standardised tests of educational performance were also obtained for a sub-set of the control group. Results Amblyopic children (n=82; age 8.2 ± 1.7 years) performed significantly poorer than age-matched control children (n=37; age 8.3 ± 1.3 years) on 9 of 16 fine motor skills sub-items and for the overall age-standardised scores for both VMC and ULSD items (p<0.05); differences were most evident on timed manual dexterity tasks. The underlying aetiology of amblyopia and level of stereoacuity significantly affected fine motor skill performance on both items. However, when examined in a multiple regression model that took into account the inter-correlation between visual characteristics, poorer fine motor skills performance was only associated with strabismus (F1,75 = 5.428; p =0. 022), and not with the level of stereoacuity, refractive error or visual acuity in either eye. Amblyopic children from grade 3 school level and above (n=47; age 9.2 ± 1.3 years), particularly those with acquired strabismus, had significantly lower social acceptance scores than age-matched control children (n=52; age 9.4 ± 0.5 years) (F(5,93) = 3.14; p = 0.012). However, the scores of the amblyopic children were not significantly different to controls for other areas related to self-esteem, including scholastic competence, physical appearance, athletic competence, behavioural conduct and global self worth. A lower social acceptance score was independently associated with a history of treatment with patching but not with a history of strabismus or wearing glasses. Amblyopic children from pre-school to grade 2 school level (n=29; age = 6.6 ± 0.6 years) had similar self-perception scores to their age-matched peers (n=20; age = 6.4 ± 0.5 years). There were no significant differences between the amblyopic (n=39; age 9.1 ± 0.9 years) and age-matched control (n = 42; age = 9.3 ± 0.38 years) groups for any of the DEM outcome measures (Vertical Time, Horizontal Time, Number of Errors and Ratio (Horizontal time/Vertical time)). Performance on the DEM did not significantly relate to measures of VA in either eye, level of binocular function, history of strabismus or refractive error. Developmental Eye Movement test outcome measures Horizontal Time and Vertical Time were significantly correlated with reading rates measured by the Visagraph for both reading for comprehension and naming numbers (r>0.5). Some moderate correlations were also seen between the DEM Ratio and word reading rates as recorded by Visagraph (r=0.37). In children with normal vision, academic scores in mathematics, spelling and reading were associated with measures of fine motor skills. Strongest effect sizes were seen with the timed manual dexterity domain, Upper Limb Speed and Dexterity. Conclusions Amblyopia may have a negative impact on a child’s fine motor skills and an older child’s sense of acceptance by their peers may be influenced by treatment that includes eye patching. Clinical measures of eye movements were not affected in amblyopic children. A number of the outcome measures of the DEM are associated with objective recordings of reading rates, supporting its clinical use for identification of children with slower reading rates. In children with normal vision, proficiency on clinical measures of fine motor skill are associated with outcomes on standardised measures of educational performance. Scores on timed manual dexterity tasks had the strongest association with educational performance. Collectively, the results of this study indicate that, in addition to the reduction in visual acuity and binocular function that define the condition, amblyopes have functional impairment in childhood development skills that underlie proficiency in everyday activities. The study provides support for strategies aimed at early identification and remediation of amblyopia and the co-morbidities that arise from abnormal visual neurodevelopment.

Reducing the risk of posttraumatic stress disorder in children following natural disasters

A significant number of children suffer long term psychological disturbance following exposure to a natural disaster. Evidence suggests that a dose-response relationship exists, so that children and adolescents who experience the most intense or extensive exposure to the risk factors for PTSD are likely to develop the most serious and persistent symptoms. Risk factors include gender, age, personality, extent of exposure to the natural disaster, amount of damage to property and infrastructure, witnessing injury or death of others or perceiving a threat to their own life. Knowing these factors enables various strategies to be put in place to decrease the risk of psychological disturbance following the aftermath of traumatic events. Re-establishing a sense of safety, security and normality is important in the aftermath of a natural disaster, and promoting social connectedness, positive family functioning, and effective coping mechanisms can make children more resilient in the face of catastrophic events. This paper examines the risk and protective factors associated with the development of post traumatic stress disorder (PTSD), and considers how schools can use this knowledge to contribute to the recovery effort, and reduce the prevalence of PTSD amongst pupils in the wake of a natural disaster.

Reading the environment : narrative constructions of ecological subjectivities in Australian children's literature

Ways in which humans engage with the environment have always provided a rich source of material for writers and illustrators of Australian children's literature. Currently, readers are confronted with a multiplicity of complex, competing and/or complementing networks of ideas, theories and emotions that provide narratives about human engagement with the environment at a particular historical moment. This study, entitled Reading the Environment: Narrative Constructions of Ecological Subjectivities in Australian Children's Literature, examines how a representative sample of Australian texts (19 picture books and 4 novels for children and young adults published between 1995 and 2006) constructs fictional ecological subjects in the texts, and offers readers ecological subject positions inscribed with contemporary environmental ideologies. The conceptual framework developed in this study identifies three ideologically grounded positions that humans may assume when engaging with the environment. None of these positions clearly exists independently of any other, nor are they internally homogeneous. Nevertheless they can be categorised as: (i) human dominion over the environment with little regard for environmental degradation (unrestrained anthropocentrism); (ii) human consideration for the environment driven by understandings that humans need the environment to survive (restrained anthropocentrism); and (iii) human deference towards the environment guided by understandings that humans are no more important than the environment (ecocentrism). iv The transdisciplinary methodological approach to textual analysis used in this thesis draws on ecocriticism, narrative theories, visual semiotics, ecofeminism and postcolonialism to discuss the difficulties and contradictions in the construction of the positions offered. Each chapter of textual analysis focuses on the construction of subjectivities in relation to one of the positions identified in the conceptual framework. Chapter 5 is concerned with how texts highlight the negative consequences of human dominion over the environment, or, in the words of this study, living with ecocatastrophe. Chapter 6 examines representations of restrained anthropocentrism in its contemporary form, that is, sustainability. Chapter 7 examines representations of ecocentrism, a radical position with inherent difficulties of representation. According to the analysis undertaken, the focus texts convey the subtleties and complexities of human engagement with the environment and advocate ways of viewing and responding to contemporary unease about the environment. The study concludes that these ways of viewing and responding conform to and/or challenge dominant socio-cultural and political-economic opinions regarding the environment. This study, the first extended work of its kind, makes an original contribution to ecocritical study of Australian children's literature. By undertaking a comprehensive analysis of how texts for children represent human engagement with the environment at a time when important environmental concerns pose significant threats to human existence, I hope to contribute new knowledge to an area of children's literature research that to date has been significantly under-represented.

What causes childhood leukaemia? Some beliefs of parents of affected children

The theories of parents about the cause of their children's leukaemia have been documented in the course of a case-control study. From a sample of 175 children who were diagnosed as having acute lymphoblastic leukaemia, 91.4% of their parents put forward their theories. Some of these theories were related clearly to material that had been published and therefore had some scientific validity. Other theories often had no apparent scientific basis. Persons who are involved in the care of children with leukaemia should be aware of the wide variety of theories that are held by their parents so that they may provide counselling which could be of help in the relief of feelings of anxiety or guilt among the parents. Parents should always be afforded the opportunity to put forward their own theories so that they may be discussed on a rational basis. It is conceivable that some parents might put forward new hypotheses about leukaemogenesis that could be tested scientifically.

Cross-cultural comparison of anxiety symptoms in Colombian and Australian children

Introduction: This cross-cultural study compared both the symptoms of anxiety and their severity in a community sample of children from Colombia and Australia. Method: The sample comprised 516 children (253 Australian children and 263 Colombian children), aged 8 to 12-years-old. The Spence Children���s Anxiety Scale (SCAS) was used to measure both the symptoms and levels of anxiety. Results: The results showed a significant difference in the severity of the symptoms between the children in the two countries. In general, Colombian children reported more severe symptoms than their Australian peers, however there were no difference in the types of symptoms reported by the children in the two countries. Discussion and Conclusion: The implications of these findings and their importance to cross-cultural research are discussed.

Maternal feeding practices and feeding behaviors of Australian children aged 12 to 36 months

Objectives To explore parents' perceptions of the eating behaviors and related feeding practices of their young children. Methods Mothers (N=740) of children aged 12 to 36 months and born in South Australia were randomly selected by birth date in four 6-month age bands from a centralized statewide database and invited to complete a postal questionnaire. Results Valid completed questionnaires were returned for 374 children (51% response rate; 54% female). Although mothers generally reported being confident and happy in feeding their children, 23% often worried that they gave their child the right amount of food. Based on a checklist of 36 specified items, 15% of children consumed no vegetables in the previous 24 hours, 11% no fruit and for a further 8% juice was the only fruit. Of 12 specified high fat/sugar foods and drinks, 11% of children consumed none, 20% one, 26% two, and 43% three or more. Six of eight child-feeding practices that promote healthy eating behaviors were undertaken by 75% parents 'often' or 'all of the time'. However, 8 of 11 practices that do not promote healthy eating were undertaken by a third of mothers at least ‘sometimes’. Conclusions In this representative sample, dietary quality issues emerge early and inappropriate feeding practices are prevalent thus identifying the need for very early interventions that promote healthy food preferences and positive feeding practices. Such programs should focus not just on the 'what', but also the 'how' of early feeding, including the feeding relationship and processes appropriate to developmental stage. Key words: Maternal feeding practices, infants, obesity