Leadership practices and indicators of quality, connected through internal evaluation processes in the New Zealand ECE sector

The last few years has seen a significant increase in the attention paid to leadership in the New Zealand early childhood education (ECE) sector, particularly in guiding documents. While these provide greater clarity than previously on expectations around leadership practice, a greater understanding of what leadership means and how it is implemented in different contexts is still needed. This article is based on a study exploring how educational leadership is practised through internal evaluation processes in New Zealand ECE services, and how these practices support the professional capabilities and capacities of teachers. Previous research has highlighted that a practice approach to leadership removes the focus on the individual leader and allows leadership to emerge from collective action. The objectives of this research study were: to develop a better understanding of how educational leadership is practised through internal evaluation processes; explore what challenges or enables teachers to become involved and practise educational leadership through internal evaluation processes; and to understand how services monitor the impact of changes on teaching practice, made as a result of an internal evaluation. This qualitative research, which took the form of an interpretive case study, was framed around a single case design with multiple units of analysis. Data were gathered from three participating ECE services through interviews, focus groups and observations, and drew on the perspectives of both teachers and positional leaders. A reflexive thematic data analysis approach was employed, and four key themes were developed: identification with leadership; supportive workplace culture; continuous improvement; and effective leadership practices in ECE services. Seven effective leadership practices were also identified: relational leadership; creating the conditions for teamwork; engagement; knowledge expertise and sharing opinions; shared decision making; facilitating and guiding and accountability and organisation. This article contributes to our further understanding of educational leadership practices in New Zealand ECE services

High daily doses of benzodiazepines among Quebec seniors: prevalence and correlates

BACKGROUND: Use of high daily doses of benzodiazepines is generally contraindicated for seniors. While both patient and physician factors may influence the use of high daily doses, previous research on the effect of patient factors has been extremely limited. The objectives of this study were to determine the one year prevalence of use of high daily doses of benzodiazepines, and examine physician and patient correlates of such use among Quebec community-dwelling seniors. METHODS: Patient information for 1423 community-dwelling Quebec seniors who participated in the Canadian Study of Health and Aging was linked to provincial health insurance administrative data bases containing detailed information on prescriptions received and prescribers. RESULTS: The standardized one year period prevalence of use of high daily doses of benzodiazepines was 7.9%. Use of high daily doses was more frequent among younger seniors and those who had reported anxiety during the previous year. Patients without cognitive impairment were more likely to receive high dose prescriptions from general practitioners, while those with cognitive impairment were more likely to receive high dose prescriptions from specialists. CONCLUSION: High dose prescribing appears to be related to both patient and physician factors

HD 259440: The Proposed Optical Counterpart of the gamma-ray Binary HESS J0632+057

HD 259440 is a B0pe star that was proposed as the optical counterpart to the gamma-ray source HESS J0632+057. Here we present optical spectra of HD 259440 acquired to investigate the stellar parameters, the properties of the Be star disk, and evidence of binarity in this system. Emission from the H-alpha line shows evidence of a spiral density wave in the nearly edge-on disk. We find a best fit stellar effective temperature of 27500-30000 K and a log surface gravity of 3.75-4.0, although our fits are somewhat ambiguous due to scattered light from the circumstellar disk. We derive a mass of 13.2-19.0 M_sun and a radius of 6.0-9.6 R_sun. By fitting the spectral energy distribution, we find a distance between 1.1-1.7 kpc. We do not detect any significant radial velocity shifts in our data, ruling out orbital periods shorter than one month. If HD 259440 is a binary, it is likely a long period (> 100 d) system.Comment: ApJ, in pres

Patients\u27 and Caregivers\u27 Needs, Experiences, Preferences and Research Priorities in Spiritual Care: A Focus Group Study Across Nine Countries.

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. Design: Focus group study. Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs. Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research

Caregiver‐reported clinical characteristics and the burden associated with Kabuki syndrome

Publisher's version (útgefin grein)Kabuki syndrome is a genetic disorder that can affect multiple body systems and manifest as congenital abnormalities and both developmental and socio-emotional delays. The condition is largely unknown by most primary care physicians and has no available treatment other than symptomatic management. This research sought to obtain caregiver-reported data about the experience of living with and caring for someone with Kabuki syndrome to fill a gap in the available literature. Fifty-seven caregivers participated in an online survey and reported that Kabuki syndrome affected their children in a wide variety of ways, including a high frequency of visits to various healthcare professionals. Caregivers reported their child experienced problems with hearing, eating, eyes, mouth, immune system, anxiety, depression, autism, teeth, joints, seizures, kidneys, and heart. Caregivers also described the challenges of caring for someone with Kabuki syndrome, including an impact on emotional well-being and the ability to work outside the home. This unique research characterizes the caregiver experience of living with and caring for someone with Kabuki syndrome, both through observed manifestations of Kabuki syndrome in their own children and their experience managing their treatment. Additional research is needed to investigate the patient experience of living with Kabuki syndrome.Rene King, President & Founder, All Things Kabuki Inc. was essential to participant recruitment and the overall success of this study. Siobhan McDonald from Endpoint Outcomes assisted with recruitment and survey administration. Caitlin Pohl from Endpoint Outcomes contributed to the design of the study, survey administration, and data analysis. Christina Theodore‐Oklota is employed by Ultragenyx Pharmaceutical Inc. who funded this research. Deborah Hartman and Deborah Hoffman were employed by Takeda Pharmaceuticals at the time this research was conducted. Chris Evans, Maggie Paulich, and Shayna Egan are employed by Endpoint Outcomes who was paid to conduct this research. Hans T. Björnsson is a consultant for Millennium Pharmaceuticals.Peer Reviewe

Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care:A focus group study across nine countries

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/participantsSeparate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.ResultsA total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.ConclusionTo meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research

Identification of a Bipolar Disorder Vulnerable Gene CHDH at 3p21.1

Genome-wide analysis (GWA) is an effective strategy to discover extreme effects surpassing genome-wide significant levels in studying complex disorders; however, when sample size is limited, the true effects may fail to achieve genome-wide significance. In such case, there may be authentic results among the pools of nominal candidates, and an alternative approach is to consider nominal candidates but are replicable across different samples. Here, we found that mRNA expression of the choline dehydrogenase gene (CHDH) was uniformly upregulated in the brains of bipolar disorder (BPD) patients compared with healthy controls across different studies. Follow-up genetic analyses of CHDH variants in multiple independent clinical datasets (including 11,564 cases and 17,686 controls) identified a risk SNP rs9836592 showing consistent associations with BPD (P meta = 5.72 × 10(-4)), and the risk allele indicated an increased CHDH expression in multiple neuronal tissues (lowest P = 6.70 × 10(-16)). These converging results may identify a nominal but true BPD susceptibility gene CHDH. Further exploratory analysis revealed suggestive associations of rs9836592 with childhood intelligence (P = 0.044) and educational attainment (P = 0.0039), a 'proxy phenotype' of general cognitive abilities. Intriguingly, the CHDH gene is located at chromosome 3p21.1, a risk region implicated in previous BPD genome-wide association studies (GWAS), but CHDH is lying outside of the core GWAS linkage disequilibrium (LD) region, and our studied SNP rs9836592 is ∼1.2 Mb 3' downstream of the previous GWAS loci (e.g., rs2251219) with no LD between them; thus, the association observed here is unlikely a reflection of previous GWAS signals. In summary, our results imply that CHDH may play a previously unknown role in the etiology of BPD and also highlight the informative value of integrating gene expression and genetic code in advancing our understanding of its biological basis

A novel approach of homozygous haplotype sharing identifies candidate genes in autism spectrum disorder

Autism spectrum disorder (ASD) is a highly heritable disorder of complex and heterogeneous aetiology. It is primarily characterized by altered cognitive ability including impaired language and communication skills and fundamental deficits in social reciprocity. Despite some notable successes in neuropsychiatric genetics, overall, the high heritability of ASD (~90%) remains poorly explained by common genetic risk variants. However, recent studies suggest that rare genomic variation, in particular copy number variation, may account for a significant proportion of the genetic basis of ASD. We present a large scale analysis to identify candidate genes which may contain low-frequency recessive variation contributing to ASD while taking into account the potential contribution of population differences to the genetic heterogeneity of ASD. Our strategy, homozygous haplotype (HH) mapping, aims to detect homozygous segments of identical haplotype structure that are shared at a higher frequency amongst ASD patients compared to parental controls. The analysis was performed on 1,402 Autism Genome Project trios genotyped for 1 million single nucleotide polymorphisms (SNPs). We identified 25 known and 1,218 novel ASD candidate genes in the discovery analysis including CADM2, ABHD14A, CHRFAM7A, GRIK2, GRM3, EPHA3, FGF10, KCND2, PDZK1, IMMP2L and FOXP2. Furthermore, 10 of the previously reported ASD genes and 300 of the novel candidates identified in the discovery analysis were replicated in an independent sample of 1,182 trios. Our results demonstrate that regions of HH are significantly enriched for previously reported ASD candidate genes and the observed association is independent of gene size (odds ratio 2.10). Our findings highlight the applicability of HH mapping in complex disorders such as ASD and offer an alternative approach to the analysis of genome-wide association data