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Background: Children have reported that one reason for participating in research is to help their doctor. This is potentially harmful if associated with coercive consent but might be beneficial for recruitment. We aimed to explore children's perceptions of the child-doctor relationship in research., Methods: This is a multicenter qualitative study with semi structured interviews performed between 2010 and 2011 (United Kingdom) and 2017-2019 (the Netherlands). Interviews took place nationwide at children's homes. We performed a secondary analysis of the two datasets, combining an amplified analysis aimed to enlarge our dataset, and a supplementary analysis, which is a more in-depth investigation of emergent themes that were not fully addressed in the original studies. All participants had been involved in decisions about research participation, either as healthy volunteers, or as patients. Recruitment was aimed for a purposive maximum variation sample, and continued until data saturation occurred. We have studied how children perceived the child-doctor relationship in research. Interviews were audiotaped or videotaped, transcribed verbatim, and thematically analyzed using Atlas.ti software., Results: In total, 52 children were recruited aged 9 to 18, 29 in the United Kingdom and 23 in the Netherlands. Children's decision-making depended strongly on support by research professionals, both in giving consent and during participation. Often, their treating physician was involved in the research process. Familiarity and trust were important and related to the extent to which children thought doctors understood their situation, were medically competent, showed support and care, and gave priority to the individual child's safety. A trusting relationship led to a feeling of mutuality and enhanced children's confidence. This resulted in improving their experiences throughout the entire research process. None of the participants reported that they felt compelled to participate in the research., Conclusions: The child-doctor relationship in pediatric research should be characterized by familiarity and trust. This does not compromise children's voluntary decision but enhances children's confidence and might result in a feeling of mutuality. By addressing the participation of children as an iterative process during which treatment and research go hand in hand, the recruitment and participation of children in research can be improved.

Purpose: For patients with end-stage knee osteoarthritis, joint replacement is a widely used and successful operation to help improve quality-of-life when non-operative measures have failed. For a significant proportion of patients there is a choice between a partial or total knee replacement. Decision aids can help people weigh up the need for and benefits of treatment against possible risks and side-effects. This study explored patients' experiences of deciding to undergo knee replacement surgery to identify information priorities, to inform a knee replacement decision aid., Methods: Four focus groups were held with 31 patients who were candidates for both partial and total knee replacement surgery. Two focus groups included patients with no prior knee replacement surgery (pre-surgery); two with patients with one knee already replaced and who were candidates for a second surgery on their other knee (post-surgery). Data were analysed using Framework Analysis., Results: Participants described a process of arriving at 'readiness for surgery' a turning point where the need for treatment outweighed their concerns. Referral and personal factors influenced their decision-making and expectations of surgery in the hope to return to a former self. Those with previous knee surgery offered insights into whether their expectations were met. 'Information for decisions' details the practicality and the optimal timing for the delivery of a knee replacement decision aid. In particular, participants would have valued hearing about the experiences of other patients and seeing detailed pictures of both surgical options. Information priorities were identified to include in a decision aid for knee replacement surgery., Conclusions: Patients' experiences of surgical decision-making have much in common with the Necessity-Concerns Framework. Whilst originally developed to understand drug treatment decisions and adherence, it provides a useful lens to understand decision-making about surgery. The use of a decision aid could enhance decision-making on knee replacement surgery. Ultimately, patients' understanding of the risks and benefits of both surgical options could be improved and in turn, help informed decision-making. The knee replacement decision aid is perceived as a useful tool to be associated with other detailed information resources as recommended.

Background: Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality., Objective: To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality., Design: Secondary analysis of qualitative narrative interview data informed by contextual systems framework., Setting: Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006., Participants: Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality., Findings: Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy., Discussion: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions., (© 2011 Blackwell Publishing Ltd.)

Background: Participation in clinical trials is critical for the success of evidence-based healthcare. Much previous research suggests that people take part in clinical trials mostly for altruistic reasons, and that deriving personal benefit is a secondary consideration., Purpose: To investigate patients' reasons for deciding whether to take part in clinical trials and the extent to which personal benefit may be a motivating factor., Methods: A qualitative study utilizing in-depth semi-structured interviews. Participants were 42 men and women who had been asked to participate in clinical trials testing a range of interventions in different conditions, including some who did not participate or withdrew. Trials were based in either primary or secondary care. Interviews were conducted at home., Results: Reasons for taking part were complex and a wide variety of personal considerations were evident. Gaining some personal benefit emerged as an important primary motivation in this group of respondents, whereas altruistic considerations appeared to be largely subsidiary. People who decided not to take part were also mainly concerned about the balance of personal risk and benefit., Limitations: Public dissemination of the results may have influenced participants' responses., Conclusions: Achieving target sample sizes for clinical trials may be enhanced by an understanding of what is likely to motivate patients to take part. In this study, respondents identified a range of attractive benefits, such as care in a specialist team with expert staff, active engagement in their health monitoring or care, more frequent or intensive monitoring, and information about the latest research into their condition.

This article presents findings from a wider UK Department of Health funded evaluation of English Primary Care Groups (PCGs) and Trusts (PCTs). It presents qualitative research into the experiences of general practitioners (GPs) in these PCG/Ts and explores the extent to which GPs manage, or are managed by, these new organizations. Using the framework of stratification theory, the paper explores whether there is any evidence to suggest PCTs will strengthen collective medical control over resource allocation whilst fending off management control of clinical decision-making. It also examines whether individual GPs not involved at board level feel a loss of control over decisions and their own clinical practice. A stratified random sample of 20 GPs was selected for in-depth interview. The in-depth interviews were designed to capture the full complexity and variety of GPs' experiences that routinely available data could not capture. GPs were anxious that clinical decisions were, or could, be overridden by other concerns such as cost control. The extent to which primary care professionals leading PCGs and PCTs could fend off managerial control was doubted. However, whilst GPs felt under threat, this was more an anticipated threat than a reality. GPs within PCG/Ts seem prepared to accept a degree of standardization if they feel that this is consistent with good clinical care. However, although there was the impression of greater central control, PCGs and PCTs and Government policies did not appear to have made an impression on clinical autonomy. [ABSTRACT FROM AUTHOR]