1,720,982 research outputs found
Review: a narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance
No full textThe quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central debates is not available. Such a review is timely to inform research governance. The methodology of this study is based on the principles of systematic reviews. Fifty-seven papers were reviewed following a thorough search, and were critically appraised for their literary quality, the knowledge on which they drew and the research standards they addressed. The debates identified address vulnerability, moral appropriateness, consent, gate-keeping and inclusion and research culture. The quality of debate and the sources of knowledge varied. The debate was rich in quality and knowledge with respect to the protection of the dignity, rights and safety of research participants, but less developed in relation to those of researchers and other staff. There is also little debate about the ethics of reporting of research and the ethics underpinning research leadership. A framework is offered that reconciles the ethical issues raised with potential methodological strategies identified from the review. <br/
Parents’ Experience of Advance Care Planning: A Grounded Theory of Re-constructing Meaning Through Advance Care Planning.
No full textChildren with life-limiting and life-threatening conditions are living longer due to medical advances and increasing options for health care intervention. This makes discussions about choices of care more complicated and engagement in the process of advance care planning ever more complex. A scoping review revealed that current understanding of parents’ experience of advance care planning is limited.Through a constructivist grounded theory approach this study aimed to deepen our understanding of the contextual and relational complexities of advance care planning for parents of children with life-limiting or life-threatening conditions. Methods combined open ended, semi-structured interviews and examination of advance care plans. Thirteen parents were interviewed, nine who were parents of children receiving palliative care and four parents of children who had died. Transcripts of digitally recorded interviews and nine advance care plans were analysed through a constant comparative approach.The study identified three conceptual components of realisation, reconciling multiple tensions and building confidence and asserting control, which revealed the experience of re-constructing meaning for parents as they engaged in the process of advance care planning. Re-constructing meaning through advance care planning enabled parents to re-adjust their thoughts, beliefs and expectations in response to ongoing changes in their child’s condition and a life anticipated without their child.The study has generated deeper understanding of parents’ experience of advance care planning and that advance care planning conversations are essential in supporting parents to live with uncertainty and the growing possibility of their child’s death. The study challenges health care professionals to reframe their approach to advance care planning; from being a record of decisions about do-not-resuscitate and treatment options, to a continuous, relational conversation about choices of care that enables parents to re-construct meaning. By fostering an approach that recognises the re-adjustments made to their values and beliefs, health care professionals can improve the experience for parents and help them to reflect on and manage the complexity and contradictions embedded within the advance care planning process for their child
Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences
No full textBackground: advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim: to understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design: Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms.Results: 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusions: advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.</p
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Full text linkWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
Full text linkWe conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
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