2 - Schools incorporating the Life Sciences and Medicine
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Item Reframing the Debate Around State Responses to Infertility : Considering the Harms of Subfertility and Involuntary Childlessness(2016-11) Brown, Rebecca C H; Rogers, Wendy A; Entwistle, Vikki; Bhattacharya, Siladitya; University of Aberdeen.Aberdeen Centre for Evaluation; University of Aberdeen.Other Applied Health Sciences; University of Aberdeen.Grampian Data Safe Haven (DaSH); University of Aberdeen.Institute of Applied Health SciencesItem Relational conceptions of paternalism : a way to rebut nanny-state accusations and evaluate public health interventions(2015-08) Carter, S. M.; Entwistle, Vikki; Little, M.; University of Aberdeen.Aberdeen Centre for Evaluation; University of Aberdeen.Other Applied Health SciencesItem 'Avoiding harm to others' considerations in relation to parental MMR vaccination discussions : an analysis of an online chat forum(Elsevier, 2008-11) Skea, Zoe Christina; Entwistle, Vikki; Watt, Ian; Russell, Elizabeth; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesVaccination against contagious diseases is intended to benefit individuals and contribute to the eradication of such diseases from the population as a whole. The Measles, Mumps and Rubella (MMR) vaccine is widely recommended for all children with the aim of protecting against measles, mumps, and rubella. However, within the UK, there has been significant controversy surrounding its safety. This paper presents findings from a UK study of discussions about MMR in an online chat forum for parents. We observed archived discussions (without posting any messages) and conducted a thematic analysis to explore in more detail how participants discussed particular topics. Most participants were female, had young children, lived in the UK. They had reached a range of decisions regarding MMR vaccination. This analysis focuses on discussions about ‘avoiding harm to others,’ which were important considerations for many of the participating parents. In the context of concerns about MMR safety, participants expressed a desire to both (a) protect their own child and (b) help protect others by contributing to herd immunity. Parents made a distinction between healthy and vulnerable children which had important implications for their views about who should bear the burden of vaccination. Some parents were quite critical of those who did not vaccinate healthy children, and urged them to do so on grounds of social responsibility. Our findings suggest that social scientists with an interest in vaccination practice should attend carefully to lay understandings of herd immunity as a public good and views about obligations to others in society. Policy makers, too, might consider giving more emphasis to herd immunity in vaccination promotional material, although attention should be paid to the ways in which parents distinguish between healthy and vulnerable children.Item Protocol for stage 2 of the GaP study (genetic testing acceptability for Paget's disease of the bone) : a questionnaire study to investigate whether relatives of people with Paget's disease would accept genetic testing and preventative treatment if they were available(BioMed Central, 2008-05-29) Langston, Anne L.; Johnston, Marie; Francis, Jillian Joy; Robertson, Clare; Campbell, Marion Kay; Entwistle, Vikki; Marteau, Theresa; MacLennan, Graeme Stewart; Weinman, John; McCallum, Marilyn; Miedzybrodzka, Zosia; Charnock, Keith; Ralston, Stuart H.; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesBackground: Paget's disease of bone (PDB) disrupts normal bone architecture and causes pain, deformity, deafness, osteoarthritis, and fractures. Genetic factors play a role in PDB and genetic tests are now conducted for research purposes. It is thus timely to investigate the potential for a clinical programme of genetic testing and preventative treatment for people who have a family history of PDB. This study examines the beliefs of relatives of people with PDB. It focuses particularly on illness and treatment representations as predictors of the acceptability and uptake of potential clinical programmes. Illness representations are examined using Leventhal's Common Sense Self-Regulation Model while cognitions about treatment behaviours (acceptance of testing and treatment uptake) are conceptualised within the Theory of Planned Behaviour. Methods/Design: A postal questionnaire of non-affected relatives of people with Paget's disease. The sample will include relatives of Paget's patients with a family history of Paget's disease and relatives of Paget's patients without a family history of Paget's disease. The questionnaire will explore whether a range of factors relate to acceptability of a programme of genetic testing and preventive treatment in relatives of Paget's disease sufferers. The questionnaire will include several measures: illness representations (as measured by the Brief Illness Perceptions Questionnaire); treatment representations (as measured by Theory of Planned Behaviour-based question items, informed by a prior interview elicitation study); descriptive and demographic details; and questions exploring family environment and beliefs of other important people. Data will also be collected from family members who have been diagnosed with Paget's disease to describe the disease presentation and its distribution within a family. Discussion: The answers to these measures will inform the feasibility of a programme of genetic testing and preventive treatment for individuals who are at a high risk of developing Paget's disease because they carry an appropriate genetic mutation. They will also contribute to theoretical and empirical approaches to predicting diagnostic and treatment behaviours from the combined theoretical models.Item Involvement in treatment decision making : its meaning to people with diabetes and implications for conceptualisation(Elsevier, 2007-10-23) Entwistle, Vikki; Prior, Maria; Skea, Zoe Christina; Francis, Jillian Joy; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesPatient involvement in decision-making is widely regarded as an important feature of good-quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options, but it is not clear how patients understand and value involvement. We investigated the meaning of involvement in treatment decision-making for people with diabetes. We conducted semi-structured interviews with 18 people aged between 20 and 79 who had type 1 or type 2 diabetes selected from 4 multi-practitioner outpatient clinics in the Grampian area of Scotland. We used several strategies to probe their understandings of involvement, including a discussion of how they would respond to a question about involvement in treatment decisions that appears on the National Patient Survey used to monitor the quality of healthcare in England. Participants associated involvement in decision-making with a number of features relating to the ethos and feel of healthcare encounters (welcoming; respectful; facilitative of patients’ contributions; and non-judgemental); communication about health problems (practitioners attending to patients’ views and patients feeling listened to; practitioners giving clear explanations based on their professional knowledge and patients understanding these); and communication about treatments (practitioners explaining treatment rationales in ways that patients understand and enabling patients to feel they have a say). Our findings have implications for practical attempts to involve patients in decisions about their care and for the conceptualisation and assessment of patient involvement. They suggest that practitioners who aspire to facilitate patient involvement should attend to the ethos they foster in consultations and the way they discuss problems as well as to the provision of information about treatment options and the scope patients have to influence decisions. Models and taxonomies of patient involvement in decision-making need to be developed to accommodate both problem-solving phases and the relational and subjective dimensions of involvement.Item Marketing and clinical trials : a case study(BioMed Central, 2007-11-20) Francis, David; Roberts, Ian; Elbourne, Diana R.; Shakur, Haleema; Knight, Rosemary C.; Garcia, Jo; Snowdon, Claire; Entwistle, Vikki; McDonald, Alison Mary; Grant, Adrian Maxwell; Campbell, Marion Kay; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesBackground: Publicly funded clinical trials require a substantial commitment of time and money. To ensure that sufficient numbers of patients are recruited it is essential that they address important questions in a rigorous manner and are managed well, adopting effective marketing strategies. Methods: Using methods of analysis drawn from management studies, this paper presents a structured assessment framework or reference model, derived from a case analysis of the MRC's CRASH trial, of 12 factors that may affect the success of the marketing and sales activities associated with clinical trials. Results: The case study demonstrates that trials need various categories of people to buy in – hence, to be successful, trialists must embrace marketing strategies to some extent. Conclusion: The performance of future clinical trials could be enhanced if trialists routinely considered these factors.Item Recruitment to randomised trials : Strategies for Trial Enrolment and Participation Study. The STEPS study(Gray Publishing, 2007-11) Campbell, Marion Kay; Snowdon, Claire; Francis, David; Elbourne, Diana R.; McDonald, Alison Mary; Knight, Rosemary C.; Entwistle, Vikki; Garcia, Jo; Roberts, Ian; Grant, Adrian Maxwell; STEPS Group; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesObjectives: To identify factors associated with good and poor recruitment to multicentre trials. Data sources: Part A: database of trials started in or after 1994 and were due to end before 2003 held by the Medical Research Council and Health Technology Assessment Programmes. Part B: interviews with people playing a wide range of roles within four trials that their funders identified as ‘exemplars’. Part C: a large multicentre trial (the CRASH trial) of treatment for head injury. Review methods: The study used a number of different perspectives (‘multiple lenses’), and three components. Part A: an epidemiological review of a cohort of trials. Part B: case studies of trials that appeared to have particularly interesting lessons for recruitment. Part C: a single, in-depth case study to examine the feasibility of applying a businessorientated analytical framework as a reference model in future trials. Results: In the 114 trials found in Part A, less than one-third recruited their original target within the time originally specified, and around one-third had extensions. Factors observed more often in trials that recruited successfully were: having a dedicated trial manager, being a cancer or drug trial, and having interventions only available inside the trial. The most commonly reported strategies to improve recruitment were newsletters and mailshots, but it was not possible to assess whether they were causally linked to changes in recruitment. The analyses in Part B suggested that successful trials were those addressing clinically important questions at a timely point. The investigators were held in high esteem by the interviewees, and the trials were firmly grounded in existing clinical practices, so that the trial processes were not alien to clinical collaborators, and the results could be easily applicable to future practice. The interviewees considered that the needs of patients were well served by participation in the trials. Clinical collaborators particularly appreciated clear delineation of roles, which released them from much of the workload associated with trial participation. There was a strong feeling from interviewees that they were proud to be part of a successful team. This pride fed into further success. Good groundwork and excellent communications across many levels of complex trial structures were considered to be extremely important, including training components for learning about trial interventions and processes, and team building. All four trials had faced recruitment problems, and extra insights into the working of trials were afforded by strategies invoked to address them. The process of the case study in Part C was able to draw attention to a body of research and practice in a different discipline (academic business studies). It generated a reference model derived from a combination of business theory and work within CRASH. This enabled identification of weaker managerial components within CRASH, and initiatives to strengthen them. Although it is not clear, even within CRASH, whether the initiatives that follow from developing and applying the model will be effective in increasing recruitment or other aspects of the success of the trial, the reference model could provide a template, with potential for those managing other trials to use or adapt it, especially at foundation stages. The model derived from this project could also be used as a diagnostic tool if trials have difficulties and hence as a basis for deciding what type of remedial action to take. It may also be useful for auditing the progress of trials, such as during external review. Conclusions: While not producing sufficiently definitive results to make strong recommendations, the work here suggests that future trials should consider the different needs at different phases in the life of trials, and place greater emphasis on ‘conduct’ (the process of actually doing trials). This implies learning lessons from successful trialists and trial managers, with better training for issues relating to trial conduct. The complexity of large trials means that unanticipated difficulties are highly likely at some time in every trial. Part B suggested that successful trials were those flexible and robust enough to adapt to unexpected issues. Arguably, the trialists should also expect agility from funders within a proactive approach to monitoring ongoing trials. Further research into different recruitment patterns (including ‘failures’) may help to clarify whether the patterns seen in the ‘exemplar’ trials differ or are similar. The reference model from Part C needs to be further considered in other similar and different trials to assess its robustness. These and other strategies aimed at increasing recruitment and making trials more successful need to be formally evaluated for their effectiveness in a range of trials.Item Financial considerations in the conduct of multi-centre randomised controlled trials: evidence from a qualitative study.(Trials, 2006-12-21) Snowdon, Claire; Elbourne, Diana R.; Garcia, Jo; Campbell, Marion Kay; Entwistle, Vikki; Francis, David; Grant, Adrian Maxwell; Knight, Rosemary C.; McDonald, Alison Mary; Roberts, Ian; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesItem What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies.(Trials, 2006-04-07) McDonald, Alison Mary; Knight, Rosemary C.; Campbell, Marion Kay; Entwistle, Vikki; Grant, Adrian Maxwell; Cook, Jonathan Alistair; Elbourne, Diana R.; Francis, David; Garcia, Jo; Roberts, Ian; Snowdon, Claire; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health SciencesItem Protocol for stage 1 of the GAP study (Genetic testing acceptability for Paget's disease of bone):an interview study about genetic testing and preventive treatment(BMC Health Services Research, 2006-06-08) Langston, Anne L.; Johnston, Marie; Robertson, Clare; Campbell, Marion Kay; Entwistle, Vikki; Marteau, T M; McCallum, M; Ralston, S H; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health Sciences