188 research outputs found

    Threat and adaptation: The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum

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    One stated objective of prenatal screening and diagnosis is the preparation for delivering a baby with medical needs or disability, however, psychosocial outcomes of parents who received a prenatal diagnosis suggest that this objective is not yet realised. Preparation may be complicated by diagnostic and prognostic uncertainty. A prenatal diagnosis that includes significant uncertainty due to the heterogeneous presentations, classifications, causes and outcomes is agenesis of the corpus callosum. As a neuroanatomical anomaly identified in the second or third trimesters, the diagnosis is likely to cause distress for expectant mothers, yet there is limited guidance for holistic support. To begin to address the paucity of research, this hermeneutic phenomenological study sought to explore, and provide a telling of the maternal experience of continuing pregnancy after a prenatal diagnosis of agenesis of the corpus callosum. Through interviews and a series of online, asynchronous and facilitated focus groups, lived experiences during pregnancy from the time of diagnosis to birth were explored with 26 mothers who participated in this international study. Themes were constructed through reflexive thematic analysis to describe the experience of the lived phenomenon. The first theme, Under Threat, included subthemes of The Threat to the Life of the Baby and Threatened Image of the Expected Family. The second theme, Day to Day Toward Adaptation, included subthemes of Holding it Together and Falling Apart, and More Than Information, Searching for Meaning, Hope and Control. To realise the commonly stated objective of prenatal diagnosis, to support maternal preparation, healthcare professionals require awareness of the profound, yet individual experience of prenatal diagnosis to adequately respond and support mothers through their continued pregnancies. Healthcare services should be designed to flexibly respond in a woman- and family-centred manner to reduce the threat and support maternal adaptation after a prenatal diagnosis

    Scoping Review of the Prenatal Diagnosis of Agenesis of the Corpus Callosum

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    Objective: To map and summarize the literature related to the prenatal diagnosis of agenesis of the corpus callosum (ACC) to inform nursing practice. Data Sources: We searched MEDLINE, CINAHL, PyscINFO, and Academic Search Complete with the use of strings of curated terms to cover the broad ACC nomenclature. Documents were published in English between 2009 and June 1, 2020. We also hand searched the reference lists of included documents. Study Selection: We screened 582 abstracts and retrieved the full texts of primary research articles, reviews, discussion papers, and peer-reviewed book chapters if the abstracts specifically mentioned ACC and the prenatal period. We excluded case reports, conference and poster abstracts, papers on broader anomalies, and animal studies. We reviewed 84 full-text documents and identified 61 for inclusion. Data Extraction: We charted the data through an iterative process under headings for location, article type, study design, participant age, ACC type, recruitment, method, tools/assessments, results, key recommendations, gestational age at diagnosis, termination of pregnancy rate, the definition of isolated ACC, and our notes of critique of the document. Data Synthesis: We constructed a narrative synthesis from thematically arranged data. In the included documents, ACC was diagnosed between 17 and 38 weeks gestation and was frequently described as heterogeneous because of different causes, presentations, and outcomes. Whether the ACC was isolated as the only anomaly or present with other anomalies was considered the key factor for prenatal counseling. However, the definition of isolated ACC was inconsistent. Conclusion: The inconsistent nomenclature and definitions of an isolated presentation of ACC increase the ambiguity in the prenatal diagnosis and must be considered when the outcome and diagnostic efficacy studies are interpreted. There is an absence of research on parents’ experiences of prenatal diagnoses of ACC to inform holistic nursing interventions and the provision of psychosocial support

    Intellectual disability health content within the nursing curriculum: an audit of what our future nurses are taught

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    Background: Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals

    Farmers Markets and the Local Food System: The Case of Gettysburg, Pennsylvania

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    In order to examine and obtain a better understanding of the local food system within Adams County, Pennsylvania, this study explores the characteristics and perspectives of the customers and vendors at the farmers markets in Gettysburg, Pennsylvania. Survey findings from the Gettysburg Farmers Market and the three Adams County Farmers Markets include customer demographic information, perspectives and shopping behavior as well as vendor product information, farm size and location and preference for market management. Introductory background information on the Farm Bill and the influence of agricultural practices on the environment, human health and nutrition and the relationship between farmers markets and the local economy are offered in order to emphasize the value of a well-managed local food system. Conclusions provide evidence that lower income and lower education levels are not sufficiently represented at all the markets and food stamp programs are being underutilized. This study suggests employing additional marketing to target underrepresented demographic groups, public transportation to potentially inaccessible market locations and increased advertisement and encouragement of food stamp programs at all markets in order to expand the customer base and increase access to healthy, local foods for less advantaged citizens. The results from this study are intended to offer evidence that will promote and facilitate market management, strengthen customer/vendor relationships and encourage better ties between the local community and local food systems at the farmers markets within Gettysburg in Adams County, Pennsylvania

    The universal, collaborative and dynamic model of specialist and advanced nursing and midwifery practice: A way forward?

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    Aims and objectives To inform and guide the development of a future model of specialist and advanced nursing and midwifery practice. Background There is a sizable body of empirical literature supporting the unique contributions of specialist and advanced practice roles to health care. However, there is very little international evidence to inform the integration of a future model for advanced or specialist practice in the Irish healthcare system. Design A qualitative study was conducted to initiate this important area of inquiry. Methods Purposive sampling was used to generate a sample of informants (n = 15) for the interviews. Nurses and midwives working in specialist and advanced practice and participants from other areas such as legislative, regulatory, policy, medicine and education were included in the sampling frame. Results Arguments for a new model of specialist and advanced practice were voiced. A number of participants proposed that flexibility within specialist and advanced practitioner career pathways was essential. Otherwise, there existed the possibility of being directed into specialised “silos,” precluding movement to another area of integrated practice. Future specialist and advanced practice education programmes need to include topics such as the development of emotional and political intelligence. Conclusion The contribution of specialist and advanced practice roles to the health service includes providing rapid access to care, seamless patient flow across services, early discharge and lead coordinator of the patient\u27s care trajectory. There was a recommendation of moving towards a universal model to cultivate specialist and advanced nurse and midwife practitioners

    Third-generation professional doctorates in nursing: the move to clarity in learning product differentiation

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    Context: Professional doctorates have been a part of the academic landscape for many years. Over this time, their focus, structure and mode of delivery have changed significantly as the terrain of professional practice has developed. In this paper we articulate this development over time through discussion of the evolution of first- and second-generation professional doctorates, and argue that there is a need for a third-generation doctorate with greater clarity regarding focus, structure and mode of delivery, in the context of advanced professional practice. Aims: A scoping review was undertaken of the development of professional doctorates in the discipline of nursing to inform thinking with regard to future design work for a post-masters (nurse practitioner endorsement) professional doctorate. Conclusion: In the context of the absence of any identified published outcome-based evidence of the value of first- or second-generation professional doctorates in general, and specifically in nursing, a third-generation evolution is proposed. This is based on the conclusion that the lack of identified outcomes is based not only on the axiomatic absence of research, but also that this may be symptomatic of a prevailing lack of clarity in programme design. A third-generation professional doctorate for nursing offers an opportunity to focus on congruence and internal consistency between the aims of the programme, learning outcomes, learning content and design, and the assessment. Implications for practice development: - The third-generation professional doctorate would no longer need to be distinguished from other degrees via an expression of what it is not, but rather would set out what it is - The educational product, with clear processes and content that are congruent with the course aims, could be clearly described as a self-contained entity more capable of producing measurable outcomes - Practice development is an integral part of the learning product through being a prescribed method in the research component of the coursesch_nur7pub5315pub2 [4

    Contextual adaptation of the Personnel Evaluation Standards for assessing faculty evaluation systems in developing countries: the case of Iran

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    <p>Abstract</p> <p>Background</p> <p>Faculty evaluations can identify needs to be addressed in effective development programs. Generic evaluation models exist, but these require adaptation to a particular context of interest. We report on one approach to such adaptation in the context of medical education in Iran, which is integrated into the delivery and management of healthcare services nationwide.</p> <p>Methods</p> <p>Using a triangulation design, interviews with senior faculty leaders were conducted to identify relevant areas for faculty evaluation. We then adapted the published checklist of the Personnel Evaluation Standards to fit the Iranian medical universities' context by considering faculty members' diverse roles. Then the adapted instrument was administered to faculty at twelve medical schools in Iran.</p> <p>Results</p> <p>The interviews revealed poor linkages between existing forms of development and evaluation, imbalance between the faculty work components and evaluated areas, inappropriate feedback and use of information in decision making. The principles of Personnel Evaluation Standards addressed almost all of these concerns and were used to assess the existing faculty evaluation system and also adapted to evaluate the core faculty roles. The survey response rate was 74%. Responses showed that the four principles in all faculty members' roles were met <it>occasionally </it>to <it>frequently</it>. Evaluation of teaching and research had the highest mean scores, while clinical and healthcare services, institutional administration, and self-development had the lowest mean scores. There were statistically significant differences between small medium and large medical schools (p < 0.000).</p> <p>Conclusion</p> <p>The adapted Personnel Evaluation Standards appears to be valid and applicable for monitoring and continuous improvement of a faculty evaluation system in the context of medical universities in Iran. The approach developed here provides a more balanced assessment of multiple faculty roles, including educational, clinical and healthcare services. In order to address identified deficiencies, the evaluation system should recognize, document, and uniformly reward those activities that are vital to the academic mission. Inclusion of personal developmental concerns in the evaluation discussion is essential for evaluation systems.</p

    Referral pathways and outcome of patients with colorectal peritoneal metastasis (CRPM)

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    Introduction Traditionally patients with colorectal peritoneal metastases (CRPM) were offered palliative chemotherapy and best supportive care. With the introduction of cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC), patients in the UK have been referred to nationally approved centres. This study describes the pattern of referral and outcomes of patients managed through one UK centre. Methods and Methods: A prospective register recorded referrals, demographics, prior treatment pathways, and specialist multidisciplinary team (MDT) decisions (2002-2015). Peritoneal cancer index (PCI) was recorded intra-operatively; complete cytoreduction was deemed when a CC0/1 was achieved. Complications were classified using NCI CTCAE. v.4. Median overall survivals (OS) were described for those treated by CRS/HIPEC and in derived estimates for patients with isolated peritoneal metastases treated by chemotherapy alone in the ARCAD trials consortium. Results Two-hundred-eighty-six patients with CRPM were referred. Despite increasing numbers of referrals annually, the proportion of patients selected for CRS/HIPEC decreased from 64.5%, to 40%, and to 37.1% for 2002–09, 2010–12, and 2013–15, respectively (p < 0.017). CRS/HIPEC was undertaken in 117 patients with a median PCI of 7 and CC0/1 achieved in 86.3%. NCI CTCAE grade 3/4 complication rates were 9.4%; 30-day mortality was 0.85%. Median OS following CRS/HIPEC was 46.0 months: that for patients not receiving CRS/HIPEC was 13.2 months. Conclusion The evolution of the national peritoneal treatment centre over 14 years has been associated with increased referral numbers, refinement of selection for major surgery, matched with achievements of low complication rates and survival advantages in selected patients compared with traditional non-surgical treatments
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