Investigating genetic discrimination in Australia: Opportunities and challenges in the early stages

Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia. The authors research project, which commenced in 2002, aims to document the multiple perspectives and experiences regarding genetic discrimination in Australia and inform future policy development and law reform. Data are being collected from consumers, employers, insurers and the legal system. Attempted verification of alleged accounts of genetic discrimination will be a novel feature of the research. This paper overviews the early stages of the research, including conceptual challenges and their methodological implications.

The functional impact of developmental co-ordination disorder during adolescence and early adult life

PURPOSE: The purpose of this study was to increase the understanding of the functional impact that coordination problems have during adolescence and early adult life. In particular, this study aimed to investigate the impact coordination deficits have on day-to-day functioning, activity levels, self-concept with respect to coordination, leisure pursuits, occupational types, accidents and injuries, as well as experiences learning to drive. RELEVANCE: This study may enable clinicians to identify at risk situations, such that appropriate prevention and targeting of treatment can occur. SUBJECTS: The participants involved in this study comprised two groups; 40 subjects previously diagnosed with DCD, and their matched controls. METHODS: Participants were initially contacted by mail for their consent to the study. Consenting participants were then contacted via telephone, and interviewed. ANALYSES: Data analysis was performed using SPSS. Chi squared analysis and Mann Whitney U test was also used to compare groups. RESULTS: During both age periods, the number of DCD subjects participating in sport was significantly less than the number of controls. Although in the 12-14 years age category, the two groups displayed similar results for the type of sport chosen, the 18 – 20 years age group, showed significant differences, with the number of DCD subjects participating in High level coordination activities, being significantly less than controls. Self-perception with respect to coordination was also significantly different amongst groups with more DCD subjects, having perceived themselves as being clumsy. Similarly, a significantly greater number of DCD subjects admitted to tripping over themselves regularly. Some differences have also been noted in the experiences of subjects learning to drive. First, the number of DCD subjects, who had difficulties learning to drive was significantly greater than controls. Second, a much greater number of Control subjects, compared to DCD subjects were successful in obtaining drivers license. Finally, also of interest is the 58% of DCD subjects who have experienced an accident whilst driving, compared to the 35% of controls. The last result of this study was that whilst there was no significant difference between groups, in the number of broken bones, dislocated joints, sprain, burns, stitches, or other significant injuries, the number of control subjects suffering muscle strains was significantly greater than the number of DCD subjects. CONCLUSION: The results of this study indicate that DCD has many implications on day-to-day functioning, both in adolescence and early adulthood. Findings have shown despite the significant sensory-motor deficits displayed by DCD subjects, the impact that this has on day-to-day functioning may be reduced by lifestyle modification.

Science or practice? UK undergraduate experiences and attitudes to the MPharm degree

Objective: The debate surrounding the science/practice balance in the teaching of undergraduate pharmacy has been played out in the professional literature for years. The objective of this work was to explore the attitudes of pharmacy undergraduates on the practice-science debate. Setting: The study was undertaken as part of a national study of teaching, learning and assessment methods in United Kingdom (UK) schools of pharmacy. Method: Six focus groups were carried out. The sample was 44 volunteer students from nine UK schools of pharmacy, representing all 4 years of the MPharm programme. Groups were tape recorded and transcribed. Analysis of the transcripts was theme based by topic. Main Outcome Measure: Qualitative data on student attitudes and experiences. Results: Most students thought that there was too strong an emphasis placed on the science components of the course in the early part of their studies. Later in the course they realised that the majority of the science was necessary; it just had not been apparent to them at the time. There were strongly held attitudes across all 4 years that it would be beneficial to include more practice-related material at the beginning of their studies. This would be beneficial for three reasons: to make the course more interesting, to aid in the contextualisation of the science component and to assist the students in any early placement or vacational work. Conclusion: Internationally, changes to the role of the pharmacist from a traditional supply function to a more clinical role has resulted in differing educational needs for the pharmacist of the future. Pharmacy will remain a degree built on a strong scientific background, but students advise that the contextualisation and sequencing of material within the degree could make a considerable improvement to their learning. Consulting students helps us to understand the teaching, learning and assessment experience better by giving insights into ways of improving the delivery. In the case of the UK, there are legislative changes impending which may provide an opportunity to review the balance of practice-and science in the curriculum. © 2006 Springer Science+Business Media B.V.

Pregnancy loss in lesbian and bisexual women: An online survey of experiences

Background: Although pregnancy loss is a distressing health event for many women, research typically equates women’s experiences of pregnancy loss to ‘married heterosexual women’s experiences of pregnancy loss’. The objective of this study was to explore lesbian and bisexual women’s experiences of miscarriage, stillbirth and neonatal death. Methods: This study analysed predominantly qualitative online survey data from 60 non-heterosexual, mostly lesbian, women from the UK, USA, Canada and Australia. All but one of the pregnancies was planned. Most respondents had physically experienced one early miscarriage during their first pregnancy, although a third had experienced multiple losses. Results: The analysis highlights three themes: processes and practices for conception; amplification of loss; and health care and heterosexism. Of the respondents, 84% conceived using donor sperm; most used various resources to plan conception and engaged in preconception health care. The experience of loss was amplified due to contextual factors and the investment respondents reported making in impending motherhood. Most felt that their loss(es) had made a ‘significant’/‘very significant’ impact on their lives. Many respondents experienced health care during their loss. Although the majority rated the overall standard of care as ‘good’/‘very good’/‘outstanding’, a minority reported experiencing heterosexism from health professionals. Conclusions: The implications for policy and practice are outlined. The main limitation was that the inflexibility of the methodology did not allow the specificities of women’s experiences to be probed further. It is suggested that both coupled and single non-heterosexual women should be made more visible in reproductive health and pregnancy loss research.

The experiences and perceptions of fathers attending the birth and immediate care of their baby

Fathers in the United Kingdom (UK) usually attend the birth and immediate care of their baby. They also have an increasing presence during complicated and preterm childbirth, newborn resuscitation and early neonatal unit(NNU) care. However, there is limited evidence about the effect of these experiences on them. The aim of this study was to gain an understanding of the experiences of fathers encountering these situations. The study consisted of three phases and was undertaken in one National Health Service trust in the UK. Qualitative semi-structured interviews using a phenomenological approach were undertaken with 20 first-time fathers present at the delivery, resuscitation and/or admission of their baby to the NNU. Direct observations were made of 22 normal and complicated deliveries and initial newborn care and qualitative semi-structured interviews using the critical incident approach were undertaken with 37 health care professionals (HCPs). The study generated qualitative and quantitative data that were analysed accordingly. The findings show that most fathers were involved for at least some of the time and often spontaneously initiated their involvement. Their most important need was for information. They were usually more concerned about their partner, irrespective of the baby?s need for resuscitation and NNU care. To facilitate their involvement, fathers needed guidance and support from HCPs, particularly delivery suite midwives. Most HCPs recognised the needs of fathers and ways in which they could be helped to connect with their experience. However, these needs were not always met, usually because of inadequate staffing levels, a lack of resources or a mother-centred philosophy of care. The findings suggest the service often determines the extent to which fathers are involved. It is anticipated that these findings will inform HCP education and training and the development of both policy and health education thereby enhancing the quality of care provision for fathers.

Milk feeding, solid feeding, and obesity risk:a review of the relationships between early life feeding practices and later adiposity

Childhood obesity is a major health issue with associated ill-health consequences during childhood and into later adolescence and adulthood. Given that eating behaviors are formed during early childhood, it is important to evaluate the relationships between early life feeding practices and later child adiposity. This review describes and evaluates recent literature exploring associations between child weight and the mode of milk feeding, the age of introducing solid foods and caregivers’ solid feeding practices. There are many inconsistencies in the literature linking early life feeding to later obesity risk and discrepancies may be related to inconsistent definitions, or a lack of control for confounding variables. This review summarizes the literature in this area and identifies the need for large scale longitudinal studies to effectively explore how early life feeding experiences may interact with each other and with nutritional provision during later childhood to predict obesity risk.

The early career researcher's toolkit:translating tissue engineering, regenerative medicine and cell therapy products

Although the importance of translation for the development of tissue engineering, regenerative medicine and cell-based therapies is widely recognized, the process of translation is less well understood. This is particularly the case among some early career researchers who may not appreciate the intricacies of translational research or make decisions early in development which later hinders effective translation. Based on our own research and experiences as early career researchers involved in tissue engineering and regenerative medicine translation, we discuss common pitfalls associated with translational research, providing practical solutions and important considerations which will aid process and product development. Suggestions range from effective project management, consideration of key manufacturing, clinical and regulatory matters and means of exploiting research for successful commercialization.

Evidence for the early clinical relevance of hallucinatory-delusional states in the general population

OBJECTIVE: To analyze, in a general population sample, clustering of delusional and hallucinatory experiences in relation to environmental exposures and clinical parameters. METHOD: General population-based household surveys of randomly selected adults between 18 and 65 years of age were carried out. SETTING: 52 countries participating in the World Health Organization's World Health Survey were included. PARTICIPANTS: 225 842 subjects (55.6% women), from nationally representative samples, with an individual response rate of 98.5% within households participated. RESULTS: Compared with isolated delusions and hallucinations, co-occurrence of the two phenomena was associated with poorer outcome including worse general health and functioning status (OR = 0.93; 95% CI: 0.92-0.93), greater severity of symptoms (OR = 2.5 95% CI: 2.0-3.0), higher probability of lifetime diagnosis of psychotic disorder (OR = 12.9; 95% CI: 11.5-14.4), lifetime treatment for psychotic disorder (OR = 19.7; 95% CI: 17.3-22.5), and depression during the last 12 months (OR = 11.6; 95% CI: 10.9-12.4). Co-occurrence was also associated with adversity and hearing problems (OR = 2.0; 95% CI: 1.8-2.3). CONCLUSION: The results suggest that the co-occurrence of hallucinations and delusions in populations is not random but instead can be seen, compared with either phenomenon in isolation, as the result of more etiologic loading leading to a more severe clinical state.

Putting children forward for epilepsy surgery:a qualitative study of UK parents' and health professionals' decision-making experiences

Background Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are. Aim The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery. Methods Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically. Findings Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives. Discussion Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals. Conclusion Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.

Reading comprehension and mathematical concept acquisition through the use of math stories with bilingual children

Math storybooks are picture books in which the understanding of mathematical concepts is central to the comprehension of the story. Math stories have provided useful opportunities for children to expand their skills in the language arts area and to talk about mathematical factors that are related to their real lives. The purpose of this study was to examine bilingual children's reading and math comprehension of the math storybooks. ^ The participants were randomly selected from two Korean schools and two public elementary schools in Miami, Florida. The sample consisted of 63 Hispanic American and 43 Korean American children from ages five to seven. A 2 x 3 x (2) mixed-model design with two between- and one within-subjects variable was used to conduct this study. The two between-subjects variables were ethnicity and age, and the within-subjects variable was the subject area of comprehension. Subjects were read the three math stories individually, and then they were asked questions related to reading and math comprehension. ^ The overall ANOVA using multivariate tests was conducted to evaluate the factor of subject area for age and ethnicity. As follow-up tests for a significant main effect and a significant interaction effect, pairwise comparisons and simple main effect tests were conducted, respectively. ^ The results showed that there were significant ethnicity and age differences in total comprehension scores. There were also age differences in reading and math comprehension, but no significant differences were found in reading and math by ethnicity. Korean American children had higher scores in total comprehension than those of Hispanic American children, and they showed greater changes in their comprehension skills at the younger ages, from five to six, whereas Hispanic American children showed greater changes at the older ages, from six to seven. Children at ages five and six showed higher scores in reading than in math, but no significant differences between math and reading comprehension scores were found at age seven. ^ Through schooling with integrated instruction, young bilingual children can move into higher levels of abstraction and concepts. This study highlighted bilingual children's general nature of thinking and showed how they developed reading and mathematics comprehension in an integrated process. ^

Illustrating Cognitive Connections between Math and Language in Pre-Service Teachers’ Perceptions of Common or Everyday Terms

This paper introduces a new construct that we term Math Mediated Language (MML) focusing on the notion that common or everyday terms with mathematical meanings are important building blocks for students’ mathematical reasoning. A survey given to 96 pre-service early childhood educators indicated clear patterns of perceptions of these terms.

Self-Identified Capabilities and Experiences with Mathematics of Adults Who Have Taken a Developmental Algebra Course

Some were born to do math, some persevered past fearful environments, while others withdrew. In this qualitative study, adults describe life with algebra and the meaning they sought. For all, pedagogy was critical, either positively or negatively; and all found salvation in intervention.

The early development and pilot -testing of a case management intervention with victims of stalking: An evaluation study

This study evaluated the early development and pilot-testing of Project IMPACT, a case management intervention for victims of stalking. The Design and Development framework (Rothman & Thomas, 1994) was used as a guide for program development and evaluation. Nine research questions examined the processes and outcomes associated with program implementation. ^ The sample included all 36 clients who participated in Project IMPACT between February of 2000 and June of 2001, as well as the victim advocates who provided them with services. Quantitative and qualitative data were drawn from client case files, participant observation field notes and interview transcriptions. Quantitative data were entered into three databases where: (1) clients were the units of analysis (n = 36), (2) services were the units of analysis (n = 1146), and (3) goals were the units of analysis (n = 149). These data were analyzed using descriptive statistics, Pearson's Chi-square, Spearman's Rho, Phi, Cramer's V, Wilcoxon's Matched Pairs Signed-Ranked Test and McNemar's Test Statistic. Qualitative data were reduced via open, axial and selective coding methods. Grounded theory and case study frameworks were utilized to analyze these data. ^ Results showed that most clients noted an improved sense of well-being and safety, although residual symptoms of trauma remained for numerous individuals. Stalkers appeared to respond to criminal and civil justice-based interventions by reducing violent and threatening behaviors; however, covert behaviors continued. The study produced findings that provided preliminary support for the use of several intervention components including support services, psycho-education, safety planning, and boundary spanning. The psycho-education and safety planning in particular seemed to help clients cognitively reframe their perceptions of the stalking experience and gain a sense of increased safety and well-being. A 65% level of satisfactory goal achievement was observed overall, although goals involving justice-based organizations were associated with lower achievement. High service usage was related to low-income clients and those lacking in social support. Numerous inconsistencies in program implementation were found to be associated with the skills and experiences of victim advocates. Thus, recommendations were made to further refine, develop and evaluate the intervention. ^

An investigation of parents' and children's beliefs of early literacy acquisition from a cross -cultural perspective

It has been reported that the cultural-historical experiences of ethnic group members can play a role in the literacy beliefs of those members. Socioeconomic conditions can also influence the belief system of the groups' constituents. This study investigated parents' and children's beliefs pertaining to early literacy acquisition as related to the ethnicity and socioeconomic status (SES) of the participants. The objectives were to determine (a) the differential patterns regarding emergent literacy and traditional skills approaches as they interact with ethnicity and SES and (b) the correspondence between parents and children's beliefs about literacy acquisition. ^ The study was conducted with 152 parents (38 low-income Hispanic, 38 middle-income Hispanic, 38 low-income African-American, and 38 middle-income African-American) and 36 of their 3-, 4-, or 5-year-old children (18 male and 18 female). ^ The parents were asked to check those items with which they agreed on a survey that consisted of an equal number of items from the traditional skills-based and emergent literacy orientations. These responses were used to determine the differences and interaction by ethnicity and SES. The children responded to open-ended questions related to the instruction of reading and writing skills. The parents' responses and children's answers were compared to ascertain the matching parent-child dyads by ethnicity and SES. ^ An item analysis was conducted to strengthen the internal reliability consistency coefficient of the traditional skills-based and emergent literacy scales as measured by the Cronbach Alpha. ^ A two-way multivariate analysis of variance (MANOVA) revealed a significant difference in traditional skill-based beliefs for the low-income African-American and Hispanic parents. There were no significant findings for the parents' traditional skill based or emergent literacy beliefs based on ethnicity, for the interaction between ethnicity and SES, or for the relationship between parents' and children's literacy beliefs by ethnicity and SES. ^ It can be concluded that low-income African-American and Hispanic parents believe in the traditional skills approach, indicating that these parents find it necessary for children to have sufficient school readiness skills prior to learning to read or write. In addition, the parent and child dyads had a strong tendency toward emergent literacy beliefs. ^

Romantic Relationships and Adjustment in Early Adulthood: The Role of Cross-sex Experience in the Context of Social Norms and Support

Attachment and interpersonal theory suggest a sequential pattern of relationships beginning in the earliest stage of development and progressing to social and eventually romantic relationships. Theoretically, cross-sex experiences have an important role in the progression of interpersonal relationships. Despite the prevalence of these theories about the nature of romantic relationship development, the linkage of cross-sex experience (CSE) to romantic relationships has not been established. Indeed, it is an intuitive assumption, especially within Western society and these theories do not consider socio-cultural factors that may influence CSE and relationship satisfaction. This study addresses the varying contextual factors that may contribute to relationship satisfaction and adjustment, aside from CSE, and is divided into two parts. Study 1, addresses CSE, relationship satisfaction, and adjustment in a unique population, ultra-Orthodox Jews. Among this population, social or romantic CSE is limited and sexes are effectively segregated. Study 2, expanded the study to a larger sample of U.S. college students, to assess the linkage of CSE to romantic relationship satisfaction in a more typical Western population. It included social norm and support variables to address the contextual nature of relationship development and satisfaction. Results demonstrated clear differences in the relation between CSE and relationship satisfaction in the two samples. In the first sample CSE was unrelated to relationship satisfaction; nevertheless, relationship satisfaction was associated with adjustment as it is for more typical populations with greater CSE. These results suggested the importance of specifying how social norms and social support relate to CSE, relationship satisfaction and adjustment. The results from the second sample were consistent with the theoretical framework upon which the social/romantic literature is based. CSE was directly connected to relationship satisfaction. As anticipated, CSE, relationship satisfaction, and adjustment also varied as a function of social norms and support. These findings further validate the influence of socio-cultural factors on relationship satisfaction and adjustment. This study contributes to the romantic relationship literature and broadens our understanding of the complex nature of interpersonal and romantic relationships.