Development of the parental needs scale for rare diseases : a tool for measuring the supportive care needs of parents caring for a child with a rare disease

Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective: To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method: A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results: Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. Conclusion: This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children

The linear invariants (dn ) and (Ω) for spaces of germs of holomorphic functions on compact subsets of Cn

For a compact subset K of Cn, we give necessary and sufficient conditions for [H(K)]0 to have the property (DN), and similarly for the property (Ω). We also show that H(D) is isomorphic to H(∆ n), where ∆n is the unit polydisc in Cn and D is any bounded Reinhardt domain in Cn. This last result requires a generalization of the classical Hartogs phenomenon

General practitioners' use of risk prediction tools and their application to Barretts Oesophagus : a qualitative study

Background: Risk prediction tools are widely used for the early identification of disease and expediting referrals to medical specialists for further assessment. This study provides an understanding of general practitioners preferences for using some prediction tools over others. The recent development of a risk prediction model for Barrett’s oesophagus prompted our investigation of General Practitioners perspectives of the barriers and enablers to its use and screening tools per se. Method: Individual semi-structured interviews explored the use of risk prediction tools in the general practice setting. A case scenario was used to create a schema that described the risk assessment process for Barrett’s oesophagus. A content analysis of verbatim transcripts was coded for barriers and enablers to tool use and linked to explanatory themes. Results: Data was collected from five general practitioners and one gastroenterologist. Barriers to regular use of risk prediction tools were identified and grouped using five themes; time poverty, tool format style, remembering to use, relevance of questions, and reduced autonomy in clinical decision making. Five key reasons for regular use were also identified; simple to use, memory prompt, provides a clear guide, aids in keeping me focused, and easy to access. All participants acknowledged the need for identifying Barrett’s oesophagus, the precursor to oesophageal adenocarcinoma, and viewed our tool as a significant contribution to risk assessment of this condition. Conclusion: Identifying barriers and enablers is essential to wide implementation of risk prediction tools. Participants provided information crucial to the translation of our risk prediction model for Barrett’s oesophagus into clinical practice. They also confirmed that the developed model would be useful in the clinical setting

Tracing sediment transport and bed regime in Nha Trang Bay

Three spatial structure groups of radionuclides in U and Th series, 210Pb-excess and 137Cs, and 40K were found based on analyzing temporal and spatial datum of their content by factor analysis with oblique rotation in Nhatrang bay. U and Th spatial structure with their contours decreased toward the offshore, ran longshore and divided seawater of bay into two parts with strong gradient on both sides. Inside part located from center of Nhatrang bay toward the seashore with three main deposit centers of their contents higher than 23 Bq/kg.dry for 238U and 40 Bq/kg.dry for 232Th, indicated unstability of shoreline. Almost sediments coming from river extended toward the offshore, were stopped and transported toward southeastern. The outside part was less than above mentioned content. The boundary line between two parts superposed with the constantly limit line of turbid plume in the rainy season. Direct influence of the continental runoff was limited by the 9 Bq/kg.dry contour of 238U, 19 Bq/kg.dry contour of 232Th. Longshore current was a predominant process whereas lateral transport as sifting and winnowing process of finer grains in sediments of Nhatrang bay. Areas that had very low content of 137Cs and 210 Pb-excess adjoining shoreline showed areas being eroded. Accumulation of 137Cs and 210 Pbexcess nearby river mouth characterized for fine compositions of sediments controlled by seasonal plumes and sites further toward the south indicated finer materials transported from river and accumulated in lack of hydrodynamic process. Near shore accumulation of 40K revealed the sediments there originated from bed erosion

Fuzzy DEMATEL Approach to Assess Factors Leading to Navigational Equipment Defect

The increasing attention to the improvement and continuous enhancement of navigational safety has led to a high standard of navigation systems and the introduction of new technologies. Although several conventions, recommendations, guidelines, and performance standards for navigational equipment are set out by the International Maritime Organization (IMO), unexpected defects on this equipment may still occur on board. Any defect on this equipment may cause both accidents and commercial loss. This paper presented A fuzzy Decision-Making Trial and Evaluation Laboratory (DEMATEL) technique to assess factors that may cause navigational equipment defects, considering the academic and industrial gaps. Five homogeneous experts were asked to evaluate the relationship among the factors with respect to the linguistic scale. After the factors were ascertained and evaluated, preventive measures for most important factors were recommended in the view of experts’ opinions in order to minimize and avoid their effect. The findings of the study will contribute to understanding the causes of navigational equipment defects and provide a basis for the continuous safety process of the ship’s bridge operations in a comprehensive aspect

Kaitiakitanga - Active guardianship, responsibilities and relationships with the world: Towards a bio-cultural future In early childhood education

The world is a vast family, and humans are children of the earth and sky, and cousins to all living things. Such unity means that nature is the ultimate teacher about life (Royal 2010, p. 9). For Māori (indigenous peoples of Aotearoa New Zealand) the term kaitiakitanga (pronounced, kye-tee-ah-key-tar-ngah) is often used to refer to the active guardianship and management of natural organisms and their environments. Mātauranga Māori or Māori knowledge positions humans within nature and focuses on ways in which cultural understandings and intergenerational connections between people and their biophysical contexts assist in the retention and protection of biodiversity and ecologically sustainable ecosystems. This entry critically reflects notions of kaitiakitanga and bio-cultural connectivity as important and meaningful contributors for young children and their relationships with and for the world

Intellectual Property Rights Issues

The CGIAR Secretariat distributed two documents as background for the discussion of intellectual property rights and related matters at the CGIAR Mid Term Meeting in May 1992.The first is a statement of the principles for an integrated policy on intellectual property rights, plant genetic resources, and biosafety originally prepared by Lukas Brader, co-chair of the TAC-Center Directors Committee on Intellectual Property Rights and Plant Genetic Resources, and revised following its discussion at TAC 56 and CGIAR International Centers Week 1991. This version was issued by the CGIAR Secretariat to members to solicit feedback prior to the Group's participation in discussions beginning in November 1991.of the proposed International Convention on Biodiversity to be signed at UNCED The second document is a discussion paper originally prepared, on the basis of various consultations among interested parties in the CGIAR, at a meeting of the joint TAC-Center Directors Committee in January 1992 with representatives of BIOTASK, discussed at TAC 57 and subsequently revised. It covers intellectual property, biosafety, and conservation of plant genetic resources, and has attachments on the International Undertaking on Plant Genetic Resources, types of intellectual property and both ex situ and in situ conservation.The CGIAR Mid Term Meeting in May 1992 approved a Working Document on Genetic Resources and Intellectual Property which is attached to the summary record of that meeting.This record contains documents related to the agendas of TAC 56 and 57, and the CGIAR meetings of October-November 1991 and May 1992

Prediction of Emergency Preparedness Level On-Board Ships Using Discrete Event Simulation: the Case of Firefighting Drill

This paper proposes a hybrid approach, including Fuzzy Dematel (FD) integrated with Discrete Event Simulation (DES), to predict emergency preparedness levels on-board ships. The FD used critical factors that affect emergency preparedness to conduct a DES based on real firefighting drill records collected from 45 merchant ships. The simulation results showed the average duration of on-board drills in ideal conditions (27.47 min.), in the worst-case scenario (51.49 min.), for Ship A (29.99 min.), and Ship B (28.12 min.). Based on the findings, recovery actions linked to the factors have been recommended to promote on-board implementation. The proposed model is of great importance to shore-based managers, allowing them to monitor the emergency preparedness level of the fleet continuously, even during pandemics. Further studies are planned to develop a remote monitoring system that would digitalize the existing response procedures in emergency situations