1,563 research outputs found

    Designing and Implementing a Longitudinal Study of Children with Neurological, Genetic, or Metabolic Conditions: \u3cem\u3eCharting the Territory\u3c/em\u3e

    Get PDF
    Background: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. Methods/Design: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0–19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio psychosocial spiritual experiences of these parents and siblings age 7–18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child’s death if the child dies during the study period. Data collection includes monthly parental assessment of the child’s symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child’s death. Discussion: Knowledge developed from this study will provide some of the first ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study

    Let's talk about psychosis

    Get PDF
    Articlen/

    Research Priorities in Pediatric Palliative Care: A Delphi Study

    Get PDF
    Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care

    Eastern Dance Meets Western World : The Therapeutic Effects of Belly Dance in Western Society & The Use of DMT to Support and Develop Those Experiences

    Get PDF
    A literary investigation of the therapeutic capacities of Oriental dance and belly dance. Oriental dance is a solo improvisation dance style from the Middle East, North Africa and parts of Central Asia that has evolved in the Western world where it's referred to as belly dance. We will discuss the transformation of Oriental dance into belly dance, the experience of belly dance in the Western world, and the holistic therapeutic effects lived by participants. Subsequently, we will discuss dance movement therapy (DMT), a specialized creative arts psychotherapy, the therapeutics of movement and a hypothesized synthesis of belly dance and dance movement therapy techniques.El següent estudi és una investigació literària de les capacitats terapèutiques de la dansa oriental i del ventre. La dansa oriental és un estil de ball d'improvisació en solitari de l'Orient Mitjà, el nord d'Àfrica i parts d'Àsia Central que ha evolucionat en el món occidental on es coneix com a dansa del ventre. Anem a parlar de la transformació de la dansa oriental a la dansa del ventre, l'experiència de la dansa del ventre en el món occidental i els efectes terapèutics holístics viscuts pels participants. Posteriorment, parlarem de la Dansa Moviment Teràpia (DMT), una psicoteràpia artística creativa especialitzada i la teràpia a través del moviment. Acabarem amb una hipòtesi com resum de les tècniques de dansa del ventre i la dansa moviment teràpia

    Construction kits or virtual worlds; management applications of E2E models

    Get PDF
    Author Posting. © The Author(s), 2011. This is the author's version of the work. It is posted here by permission of Elsevier B.V. for personal use, not for redistribution. The definitive version was published in Journal of Marine Systems 109/110 (2013): 103-108, doi:10.1016/j.jmarsys.2011.10.016.We review briefly the diversity of modeling activity that comes under the rubric of end-to-end (E2E) models, but the focus of this paper – of joint concern to researchers and to managers - is on applications to management and decision making. The models and applications span a range from “construction kits” that identify particular management issues and use comparisons across ecosystems; to “virtual worlds” that immerse managers in the details of strategic evaluations for particular systems. The general conclusion is that “application” is not a straightforward transition from theory to practice but a complex interactive process.This review is based on the proceedings of a workshop, held at Woods Hole Oceanographic Institution, 19-22 April 2010, as part of CAMEO (Comparative Analysis of Marine Ecosystem Organization), a program supported jointly by NOAA (U.S. National Oceanic and Atmospheric Agency) and NSF (U.S. National Science Foundation)

    The SF3B1 inhibitor spliceostatin A (SSA) elicits apoptosis in chronic lymphocytic leukemia cells through downregulation of Mcl-1

    No full text
    The pro-survival Bcl-2 family member Mcl-1 is expressed in chronic lymphocytic leukemia (CLL), with high expression correlated with progressive disease. The spliceosome inhibitor spliceostatin A (SSA), is known to regulate Mcl-1 and so here we assessed the ability of SSA to elicit apoptosis in CLL. SSA induced apoptosis of CLL cells at low nanomolar concentrations in a dose- and time-dependent manner, but independently of SF3B1 mutational status, IGHV status and CD38 or ZAP70 expression. However, normal B and T cells were less sensitive than CLL cells (P=0.006 and P<0.001, respectively). SSA altered the splicing of anti-apoptotic MCL-1L to MCL-1s in CLL cells coincident with induction of apoptosis. Overexpression studies in Ramos cells suggested Mcl-1 was important for SSA-induced killing since its expression inversely correlated with apoptosis (P=0.001). IL4 and CD40L, present in patient lymph nodes, are known to protect tumor cells from apoptosis and significantly inhibited SSA, ABT-263 and ABT-199 induced killing following administration to CLL cells (P=0.008). However, by combining SSA with the Bcl-2/Bcl-xL antagonists ABT-263 or ABT-199, we were able to overcome this pro-survival effect. We conclude that SSA combined with Bcl-2/Bcl-xL antagonists may have therapeutic utility for CL

    Golf Swing Rotational Velocity: The Essential Follow-Through

    Get PDF
    Objective To evaluate if shoulder and pelvic angular velocities differ at impact or peak magnitude between professional and amateur golfers. Golf swing rotational biomechanics are a key determinant of power generation, driving distance, and injury prevention. We hypothesize that shoulder and pelvic angular velocities would be highly consistent in professionals. Methods Rotational velocities of the upper-torso and pelvis throughout the golf swing and in relation to phases of the golf swing were examined in 11 professionals and compared to 5 amateurs using three-dimensional motion analysis. Results Peak rotational velocities of professionals were highly consistent, demonstrating low variability (coefficient of variation [COV]), particularly upper-torso rotational velocity (COV=0.086) and pelvic rotational velocity (COV=0.079) during down swing. Peak upper-torso rotational velocity and peak X-prime, the relative rotational velocity of uppertorso versus pelvis, occurred after impact in follow-through, were reduced in amateurs compared to professionals (p=0.005 and p=0.005, respectively) and differentiated professionals from most (4/5) amateurs. In contrast, peak pelvic rotational velocity occurred in down swing. Pelvic velocity at impact was reduced in amateurs compared to professionals (p=0.019) and differentiated professionals from most (4/5) amateurs. Conclusion Golf swing rotational velocity of professionals was consistent in pattern and magnitude, offering benchmarks for amateurs. Understanding golf swing rotational biomechanics can guide swing modifications to help optimize performance and prevent injury
    • …
    corecore