1,721,031 research outputs found
Exploring parent treatment decision-making in relapsed and refractory neuroblastoma; co-design of an intervention to support and facilitate parents in making these decisions
No full textThe focus of this research was treatment decision-making of parents whose child had either relapsed or refractory neuroblastoma, a poor-prognosis cancer. There is no standard treatment protocol for relapsed or refractory neuroblastoma, with various treatment options available and no clear treatment endpoints. As a result, parents become involved in making repeated treatment decisions depending on their child’s response to treatment and availability of treatments. Interventions are needed to support parents in making these difficult decisions.This was a qualitative research study incorporating co-design with intervention development which aimed to: 1) identify, describe, explore, and explain how parents made treatment decisions when their child had relapsed or refractory neuroblastoma (phase one) and 2) develop an intervention prototype for parents which supports their treatment decision-making (phase two). This thesis comprises six papers, three published and three under review which presents the research undertaken in each phase.In phase one, a scoping review explored parent values and preferences underpinning treatment decision-making in poor-prognosis cancer following the Joanna Briggs Methodology. Twelve articles were included, and findings showed there were underpinning and influencing factors, values and preferences which informed parent decision-making. Qualitative semi-structured interviews with 18 parents, analysed using reflexive thematic analysis explored how parents made treatment decisions and the role of emotion in making these decisions. Findings generated four themes which enabled, influenced, and informed parent decision-making: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. A conceptual framework illustrates the relationships between these themes.In phase two, intervention development was co-designed with six parents following the Medical Research Council Framework for developing complex interventions, informed by the findings from phase one. Intervention user testing with seven parents using cognitive interviews resulted in reformatting web pages for ease of navigation, reducing text paragraphs, and incorporating parent quotes for authenticity. This study addressed a gap in knowledge on how parents made repeated treatment decisions when their child has a poor-prognosis cancer and, in doing so, informed the first disease specific intervention to support parents in making these decisions. <br/
Supporting parent treatment decision-making in relapsed and refractory neuroblastoma: co-design of a web-based intervention
No full textBackground: parents of children diagnosed with relapsed or refractory neuroblastoma become involved in making treatment decisions for their child due to an absence of no standard treatment protocol with no clear treatment endpoints. Relapsed and refractory neuroblastoma is a poor-prognosis childhood cancer with varying treatment options available depending on their child’s response to treatment. As a result, parents in partnership with their child’s medical team make repeated treatment decisions over time. Research has shown how this decision-making is influenced by uncertainty of their child’s response to treatments and overall outcome, and parents’ emotional and cognitive adjustments. Having time to research and gather information has also shown to enable and inform parent involvement and responsibility within decision-making. An intervention to support parents can help them navigate these complex decisions aiding their cognitive, emotional, and practical needs to enable and inform their decision-making.Methods: intervention development followed the Medical Research Council Framework for developing complex intervention co-designed with a parent stakeholder group. A review of the literature and analysis of parent interviews informed the intervention. A one-off clinical advisory group was formed to review draft content. Intervention user testing was completed using cognitive think-aloud interviews.Results: a web-based intervention was developed to support and facilitate parent treatment decision-making in relapsed and refractory neuroblastoma. Co-design was iterative with a combination of ten face-to-face and virtual workshops to discuss and develop the website content, design, and layout. User testing was completed with seven parents and findings informed changes which included reformatting web pages, reducing text paragraphs for easier reading, creating additional webpages for ease of navigation of information and providing parent quotes for authenticity. Recommendations for intervention development using co-design are provided based on our experiences of using this approach.Conclusions: this is a disease specific intervention developed to support and facilitate parent treatment decision-making in a specific poor-prognosis childhood cancer. Co-design was essential to ensure the intervention met the needs of this parent population. Further work following the MRC framework will test and evaluate its impact and effectiveness in clinical practice
The approach and application of analysing inductive and deductive datasets: a worked example using reflexive thematic analysis
No full textBraun and Clarke’s reflexive thematic analysis (reflexive TA) has gained wide attraction since its conception in 2006. Reflexive TA is methodologically flexible with researchers making decisions, which support their philosophical positionings. Qualitative research publications are often criticised for their lack of detail on the analytical processes undertaken to develop the analysis. This level of detail is important for novice researchers in learning ‘how to do’ analysis. This paper provides a worked example of the analytical approach using reflexive TA when exploring parent treatment decision-making in poor-prognosis childhood cancer. Qualitative analysis was undertaken of interview transcripts at different decision timepoints incorporating inductive and deductive approaches resulting in within and across case analysis. Discussion reflecting on the challenges, iterative processes and contextual decisions made on and towards the data is provided. The aim is to share an example of ‘how to’ approach reflexive TA to support novice researchers in their learning
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
Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review protocol
Full text linkIntroduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer. Methods and analysis The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries. Ethics and dissemination Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations. This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).</p
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
Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: a qualitative study
No full textParents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes
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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