4,031 research outputs found
Conversations with William Gibson
No full textInterviews with the author of Neuromancer, Pattern Recognition, Spook Country, and Zero History.Intro -- Title -- Copyright -- Contents -- Introduction -- Chronology -- Eye to Eye: An Interview with William Gibson -- An Interview with William Gibson -- Conversation with William Gibson -- Queen Victoria's Personal Spook, Psychic Legbreakers, Snakes, and Catfood: An Interview with William Gibson and Tom Maddox -- "The Charisma Leak": A Conversation with William Gibson and Bruce Sterling -- An Interview with William Gibson: Virtual Light Tour -- William Gibson Interview -- The Man Who Named Cyberspace: An Interview with William Gibson -- William Gibson, Webmaster -- William Gibson Interview -- William Gibson Interview -- An Interview with William Gibson -- William Gibson: Waiting for the Man -- William Gibson Interview Transcript -- Redefining William Gibson -- William Gibson: The Father of Cyberpunk -- Futuristic Fantasy Lives Now for Author William Gibson -- Space to Think -- Interview: William Gibson -- William Gibson Talks to io9 about Canada, Draft Dodging, and Godzilla -- William Gibson: The Art of Fiction No. 211 -- Why William Gibson Distrusts Aging Futurists' Nostalgia -- William Gibson: The Complete io9 Interview -- Key Resources -- IndexInterviews with the author of Neuromancer, Pattern Recognition, Spook Country, and Zero History.Description based on publisher supplied metadata and other sources.Electronic reproduction. Ann Arbor, Michigan : ProQuest Ebook Central, YYYY. Available via World Wide Web. Access may be limited to ProQuest Ebook Central affiliated libraries
Developing an Integrated Approach to the Care of Adolescents and Young Adults with Cancer
No full textParent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review protocol
No full textIntroduction 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
What is important to young children who have cancer while in hospital?
No full textThis paper reports on a participatory research project exploring children's experiences and views of cancer care services. It focusses on findings from interviews conducted with 10 children aged four and five years old. Play and puppets were used to help children express their views. The themes elicited reveal important aspects of hospital care for young children, such as having 'lots of toys' available and that 'mummy and daddy are near'. The use of play and puppets as a data-collection method is discussed, along with the implications of findings for the care and support of young children who have cance
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
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
Methodological issues when using the draw and write technique with children aged 6-12 years
No full textResearchers are responsible for using techniques that allow children to contribute their perspectives in a way that is most suited to their strengths and preferences. The draw and write technique is a method that needs to be used carefully and sensitively if children are to become active participants in revealing their world as they see it. In this article, we explore the issues for the child and researcher of using the draw and write technique as a participatory research methodology. Reflections on the technique are drawn from our experience of using it with children aged 6 to 12 years. This was part of a larger study undertaken to enable children aged 4 to 18 years with a diagnosis of cancer to give their views about hospital care. The participating children's verbal and artistic contributions illustrate how children are able to convey their opinions when there is an enabling climate create
Follow-up after cancer: a typology of young people's health care needs
No full textBackground: the paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion.Methodology: the study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires.Findings: forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge.Conclusions and relevance to practice: young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up servic
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