Newborn screening for cystic fibrosis - The parent perspective.

BACKGROUND Newborn screening for CF started 01/2011 in Switzerland. We investigated the parents' opinions about the information received, their feelings, and overall approval of the screening. METHODS This is a prospective questionnaire survey of all parents of positively screened children. Parents were phoned by CF-centres and invited for diagnostic investigations. They completed a questionnaire after the visit to the CF-centre. RESULTS From 2011-2013, 246 families received the questionnaire and 138 (56%) replied. Of these 77 (60%) found the information received at birth satisfactory; 124 (91%) found the information provided in the CF-centre satisfactory. Most parents (n=98, 78%) felt troubled or anxious when the CF-centre called, 51 (38%) remained anxious after the visit. Most parents (n=122; 88%) were satisfied with the screening, 4 (3%) were not, and 12 (9%) were unsure. CONCLUSIONS The smooth organisation of the screening process, with personal information by a CF specialist and short delays between this information and the final diagnostic testing, might have contributed to reduce anxiety among parents. Most families were grateful that their child had been screened, and are happy with the process.

A study on the role of the parent in educational decision making from the perspective of parents and teachers

ADeweyan (1916) democratic theoty ofeducation called for the participation ofall citizens in deliberating important educational issues to improve overall student learning. Thus, the move to include parents in educational decision making can be considered to be rooted in democratic principles. To gain greater insight into the issue ofparent involvement in educational decision making, one elementary school was studied and a triangulization method was employed in an attempt to clarify the important issues surrolUlding the move to include parents in the governance ofschools. The three methods to gain information included surveys, interviews, and documentation ofsignificant school events and related work. All ofthe parents and teachers ofthe school were surveyed, 10 parents and 6teachers were interviewed, and related school events were recorded. The survey design was modeled on the Parent Involvement Questionnaire (PIQ) created and reported on by Chavkin and Williams (1987). The results ofthe surveys were used as a guide for the interview questions. An interview outline was developed based on Seidman's (1991) open-ended approach and Patton's (1980) standardized open-ended interview style in which parents and teachers were asked about their experiences and opinions on anmnber ofparent involvement issues. Parents and teachers in this school indicated agreater interest in becoming more aware ofeducational issues such as school budget and school discipline policies. Although the parents indicated agreater interest in school matters and the teachers indicated awillingness to include parents in school matters, both the parents and teachers in this study perceived the role ofthe parent as advisory, not decision making. It was concluded that to ensure ameaningful and functional role for parellts as tlleir p811icipatioll ill educational matters evolves, SCllools must have a clear vision ofthe primary goal ofall schools, namely, to foster and nourish democratic citizens for ademocratic society (Glickman, 1993). Furthennore, intentional practices such as Purkey's (ad) 5-P Relay approach, based on a democratic theory and practice of education, will have to be employed in order to give parents an authentic voice in educational matters and provide an avenue for parents to acquire the necessary skills and lmowledge needed to do so. As schools, school boards, and the Ministry ofEducation implement parent involvement guidelines and policies, developmental needs ofeach school need to be considered to ensure the employment ofdemocratic practices not authoritarian mandates. Parent interest and involvement, at whatever level, should be an important element in the overall move to make schools part ofthe democratic society they were meant to be.

Anthropologie de la parenté : la méconnaissance de la perspective évolutionniste et ses conséquences sur la théorisation.

Pendant plus de cent ans, les anthropologues ont étudié les phénomènes de parenté tels que le mariage et la famille dans une grande diversité de sociétés humaines. En dépit de ces efforts, il y a clairement un manque de consensus concernant les notions de bases impliquées et plusieurs anthropologues sont insatisfaits de l’état actuel des connaissances théoriques offertes par leur discipline. Nous nous sommes donc demandé si la perspective culturaliste, qui ne tient pas compte des fondements biologiques du comportement humain et qui a dominé les études de parenté depuis leurs débuts, serait responsable de cet état de fait. Pour tester cette hypothèse, nous avons comparé deux corpus de connaissances portant sur les notions de base de la parenté humaine. Le premier s’appuie sur le contenu de sept manuels d’anthropologie ainsi que sur l’œuvre marquante de David M. Schneider « A Critique of the Study of Kinship » (1984). Le deuxième s’appuie sur des connaissances acquises dans une perspective évolutionniste portant sur les mêmes phénomènes. Les résultats de cette analyse comparative indiquent que les anthropologues méconnaissent l’influence de la biologie sur la parenté et que l’intégration des connaissances existantes à ce sujet dans les théories anthropologiques permettrait de résoudre les principaux problèmes identifiés.

Acepromazine pharmacokinetics: A forensic perspective

Acepromazine (ACP) is a useful therapeutic drug, but is a prohibited substance in competition horses. The illicit use of ACP is difficult to detect due to its rapid metabolism, so this study investigated the ACP metabolite 2-(1-hydroxyethyl)promazine sulphoxide (HEPS) as a potential forensic marker. Acepromazine maleate, equivalent to 30 mg of ACP, was given IV to 12 racing-bred geldings. Blood and urine were collected for 7 days post-administration and analysed for ACP and HEPS by liquid chromatography–mass spectrometry (LC–MS). Acepromazine was quantifiable in plasma for up to 3 h with little reaching the urine unmodified. Similar to previous studies, there was wide variation in the distribution and metabolism of ACP. The metabolite HEPS was quantifiable for up to 24 h in plasma and 144 h in urine. The metabolism of ACP to HEPS was fast and erratic, so the early phase of the HEPS emergence could not be modelled directly, but was assumed to be similar to the rate of disappearance of ACP. However, the relationship between peak plasma HEPS and the y-intercept of the kinetic model was strong (P = 0.001, r2 = 0.72), allowing accurate determination of the formation pharmacokinetics of HEPS. Due to its rapid metabolism, testing of forensic samples for the parent drug is redundant with IV administration. The relatively long half-life of HEPS and its stable behaviour beyond the initial phase make it a valuable indicator of ACP use, and by determining the urine-to-plasma concentration ratios for HEPS, the approximate dose of ACP administration may be estimated.

Distress in children with learning disabilities at a respite unit: perspective on their experiences

Numerous studies have investigated the benefits of respite to families with a disabled child. Far fewer have examined the effects on the child and none have systematically compared information about this from different sources. Reports of behavioural reactions and views on distress were gathered from parents, teachers and respite staff. Children were also asked for their views. Over half the children (54%) were reported to show medium or strong negative reactions lasting for 1 or more days by a parent or teacher. Reported reactions varied widely between home and school and no concordance was found between parents, teachers and respite staff groups regarding distress. Some children's views differed from those of their parent or teacher. The findings highlight the extent of differences in perspectives and suggest the need for greater awareness of the possible distress to children attending respite. This is discussed in relation to factors such as the potential conflict of interests between parents and children, communication and behavioural difficulties, and the context in which the child is observed.

Parenting advantage in the MNC: An embeddedness perspective on the value added by headquarters

What determines the value an MNC’s headquarters adds to its own affiliates? In this paper, we shed light on this question by linking the embeddedness view of the multinational corporation to the literature on parenting advantage. We test our hypotheses on an original dataset of 124 manufacturing subsidiaries located in Europe. Our results indicate that the external embeddedness of the MNC is an antecedent to headquarters’ value creation. We find that headquarters’ investments into their own relationships with the subsidiaries’ contexts are positively related to the value added by headquarters. Furthermore, this relationship is stronger when the subsidiary itself is strongly embedded. We discuss implications for the MNC literature, embeddedness research, and the literature on parenting and headquarters’ roles. Copyright © 2013 John Wiley & Sons, Ltd.

Poverty in Ireland in Comparative European Perspective

In this paper we seek to put Irish poverty rates in a comparative European context. We do so in a context whereby the Irish economic boom and EU enlargement have led to increasing reservations being expressed regarding rates deriving from the EU 'at risk of poverty' indicator. Our comparative analysis reports findings for both overall levels of poverty and variation by household reference person characteristics for this indicator and a consistent poverty measure for Ireland, the UK and five smaller European countries spanning a range of welfare regimes. Our findings demonstrate that the distinctiveness of Ireland's situation lies not in the overall levels of poverty per se but in the very high penalties associated with being in a household where the household reference person is a lone parent or excluded from the labour market.

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

Promoting parent-therapist collaboration in intensive behavioural intervention programs : exploring estrategies to improve teamwork

This qualitative study investigated senior level staff (Senior Therapists), front-line staff (Instructor Therapists), and parent perspectives on parent-therapist collaboration within Intensive Behavioural Intervention settings. Two senior staff interviews, two parent interviews, and a focus group with therapists were conducted to examine how parents and therapists currently interact within IBI settings, parent and therapist expectations of each other, factors that promote and barriers that impede parent-therapist collaboration, and how parent-therapist collaboration might be improved. A constant comparative analysis by question within and across cases revealed five prominent themes of 'Role Definition', 'Perspective-taking/Empathy', 'Trust', 'Open Communication', and 'Consistency'. Additional similarities and differences were discovered between parent and therapist perspectives such as the need for clear parentprofessional boundaries, the importance of maintaining client privacy, and respect. Implications of the findings and suggestions for future research are discussed.

The form and function of aggressive subtypes: Relations with the goodness of fit between adolescent temperament and parent personality

The current research investigated whether the interaction between adolescent temperament and parent personality, consistent with the goodness of fit perspective, differentially predicted overt (e.g., kicking, punching, insulting) and relational (e.g., gossiping, rumour spreading, ostracising) forms of reactive (e.g., provoked, a response to goal blocking, unplanned and emotional) and proactive (e.g., unprovoked, goal-directed, deliberate and relatively unemotional) aggression. Mothers, fathers and their adolescent child (N = 448, age 10-17) from southern Ontario, Canada filled out questionnaires on adolescent temperament (i.e., frustration, fear, and effortful control) and aggression. Parents reported on their own personality traits (i.e., agreeableness, conscientiousness, and emotional stability). The form and function of aggression not encompassed by the subtype under investigation were controlled in each regression analysis. Consistent with the hypothesis, results indicated that a poor fit between adolescent temperament vulnerabilities and lower parent personality traits, including agreeableness, conscientiousness and emotional stability, was predictive of greater levels of differentiated aggression. For instance, lower father conscientiousness strengthened the relation between higher frustration and reactive overt aggression. Unexpectedly in some cases, temperament risk factors were more strongly associated with aggression subtypes when personality scores were at higher levels, particularly agreeableness and conscientiousness, traits normally considered to be at the optimal end of the dimension. For example, higher father agreeableness strengthened the relation between higher frustration and reactive relational aggression. At the main effects level, low fearfulness was significantly associated with only the overt subtypes of aggression, and unexpectedly, higher frustration and lower effortful control were related to both proactive and reactive subtypes of aggression. A temperamentally vulnerable adolescent was also at greater risk of displaying aggressive behaviour when the father lacked emotional stability, but not the mother. These results are broadly consistent with the prediction that temperament risk factors are more strongly associated with aggression subtypes when an adolescent predisposition does not fit well with parent personality traits. Mechanisms pertaining to stress in the family environment and the fostering of self-regulation abilities are discussed with respect to why a poor fit between temperament and parent personality is predictive of adolescent differentiated aggression.

Parenté fluide : la quête des origines au Brésil et au Québec : dialogue entre parenté, droit et science

Cette thèse porte sur la question des origines biogénétiques au Brésil et au Québec. Elle vise à mettre en lumière les raisons, conséquences et contraintes de la recherche des origines entreprise par les personnes conçues grâce à un don de gamètes ou adoptées. La question des origines est ici analysée à partir de trois points de vue: la parenté, le droit et la science. Le cadre proposé combine les trois approches suivantes : 1) le recours à la parenté permet dřanalyser, de par son caractère hybride, social et biologique, les tensions entre nature et culture; 2) le droit balise les comportements permis et transforme les notions associées à ce qui est correct et juste en des principes d'action; 3) la science construit, sous lřangle de la vérité, la manière dont les liens entre génétique, transmission et hérédité sous-tendent les comportements sociaux. Les représentations de lřorigine mises de lřavant dans ces trois domaines influencent la décision personnelle dřentreprendre ou non la quête de ses origines et celle, éventuelle, d'introduire un « étranger » dans la famille. Ces différents angles permettront de saisir le rôle de chacun des personnages impliqués et de décrire les conditions associées à la quête identitaire et à la filiation. La construction de la thèse sřappuie sur l'histoire des pratiques d'adoption et de procréation médicalement assistée (PMA), au Brésil et au Québec et sur les études qui sřy rapportent. La comparaison entre ces deux pays ne se limite pas à identifier leurs seules différences en termes socio- économiques ; elle prend aussi en compte leur spécificité culturelle et juridique à travers le concept dř « épistémologies civiques ». La parenté, le droit et la science fournissent le contexte permettant de comprendre les raisons mises en jeu dans la recherche des origines. De fait, la valorisation des liens de parenté sociale dialogue, entre autres, avec la curiosité pour les données génétiques. De plus, la loi sřinscrit comme une médiation entre parenté et science. Lřétude des ressemblances et différences dans la pratique de l'adoption et de la PMA au Brésil et au Québec permet de suivre les étapes de la quête des adoptés et issus d'un don de gamètes, de la découverte des conditions de leur filiation jusqu'aux « retrouvailles ». La thèse aborde également le débat entre les versants personnel et collectif de lřidentité à travers l'analyse des pratiques et des discours des associations de personnes adoptées, des couples infertiles et des familles homoparentales, autour de la thématique des origines. Le but de cette thèse est de souligner l'importance de mettre en perspective ces échanges entre la parenté, le droit et la science pour comprendre les réalités complexes que nous vivons aujourd'hui. iii L'origine et sa quête sont les véhicules utilisés ici pour mettre en évidence des formes familiales plurielles qui permettent d'analyser la manière dont nous négocions de nouvelles formes de filiation et de construction des familles.

The 'welfare of the child' in Shari'a law: an analysis of child custody law and practices in Bangladesh from a feminist perspective

The paper seeks to draw attention to some of the recent cases relating to child custody law in Bangladesh where, deviating from orthodox Shari’a rules, courts have looked to ‘the welfare’ of the child in determining which parent shall have custody. In studying the recent ‘welfare of child’ standard that has been advanced by the courts in Bangladesh, the paper aims to explore its implications for Muslim women from a feminist perspective.

Paediatric rheumatology - A global perspective

This chapter aims to give a global perspective to paediatric rheumatology. The main points covered are the incidence, recognition of paediatric autoimmune diseases, and ethnic/geographic distribution. The most prevalent disease is juvenile idiopathic arthritis; robust data are still required for childhood-onset systemic lupus erythematosus, dermatomyositis, and scleroderma. Mimicking or overlapping infections are a major challenge in developing countries, and immunization policies in our patients in these areas need specific attention. The delivery of paediatric rheumatology care is also overviewed. Discrepancies in health-care resources and priorities are found in developing countries. Although most anti-rheumatic treatments are available worldwide, they are prohibitively expensive in many countries. For more traditional antirheumatic drugs there is still an ongoing need for good core outcome data across the world to ensure valid comparisons. Parent/patient education has been implemented worldwide in paediatric rheumatology through the power of the Internet. Physician and undergraduate training goals must be met to facilitate competent musculoskeletal assessment, a proper understanding of age-dependent variations, diagnosis, referral to specialists, and improved standards of care.

Sustainability and scalability of university spinouts:a business model perspective

Most previous studies of university spinouts (USOs) have focused on what determines their formation from the perspectives of the entrepreneurs or of their parent universities. However, few studies have investigated how these entrepreneurial businesses actually grow and how their business models evolve in the process. This paper examines the evolution of USOs' business models over their different development phases. Using empirical evidence gathered from three comprehensive case studies, we explore how USOs' business models evolve over time, and the implications for the financial sustainability and operational scalability of these ventures. This paper extends existing research on the development of USOs, and highlights three themes for future research.

Parent involvement on school advisory councils: A process evaluation at the middle school level

Increasing parental involvement was made an important goal for all Florida schools in educational reform legislation in the 1990's. A forum for this input was established and became known as the School Advisory Council (SAC). To demonstrate the importance of process and inclusion, a south Florida school district and its local teacher's union agreed on the following five goals for SACs: (a) to foster an environment of professional collaboration among all stakeholders, (b) to assist in the preparation and evaluation of the school improvement plan, (c) to address all state and district goals, (d) to serve as the avenue for authentic and representative input from all stakeholders, and (e) to ensure the continued existence of the consensus-building process on all issues related to the school's instructional program. ^ The purpose of this study was to determine to what extent and in what ways the parent members of one south Florida middle school's SAC achieved the five district goals during its first three years of implementation. The primary participants were 16 parents who served as members of the SAC, while 16 non-parent members provided perspective on parent involvement as “outside sources.” Being qualitative by design, factors such as school climate, leadership styles, and the quality of parental input were described from data collected from four sources: parent interviews, a questionnaire of non-parents, researcher observations, and relevant documents. A cross-case analysis of all data informed a process evaluation that described the similarities and differences of intended and observed outcomes of parent involvement from each source using Stake's descriptive matrix model. A formative evaluation of the process compared the observed outcomes with standards set for successful SACs, such as the district's five goals. ^ The findings indicated that parents elected to the SACs did not meet the intended goals set by the state and district. The school leadership did not foster an environment of professional collaboration and authentic decision-making for parents and other stakeholders. The overall process did not include consensus-building, and there was little if any input by parents on school improvement and other important issues relating to the instructional program. Only two parents gave the SAC a successful rating for involving parents in the decision-making process. Although compliance was met in many of the procedural transactions of the SAC, the reactions of parents to their perceived role and influence often reflected feelings of powerlessness and frustration with a process that many thought lacked meaningfulness and productivity. Two conclusions made from this study are as follows: (a) that the role of the principal in the collaborative process is pivotal, and (b) that the normative-re-educative approach to change would be most appropriate for SACs. ^