Receiving a summary of the results of a trial: qualitative study of participants' views

Objective To explore trial participants' responses to receiving a summary of the results of a trial in pregnancy. Design Qualitative study with semistructured interviews. Participants 20 women who had when pregnant participated in the ORACLE trial of antibiotics for preterm labour and preterm rupture of the membranes and requested a copy of the trial results. Results Less than a fifth of women who participated in the ORACLE trial indicated that they wished to receive the trial results. Reactions to the leaflet summarising the trial results were generally positive or neutral, although some women had difficulty in understanding the leaflet, and there was evidence of possible negative implications for women who had adverse outcomes. Women requested the results because they were interested in being able to complete their own personal narrative. They wished to know to which arm of the trial they had been allocated and the implications for their own pregnancy, and they were disappointed with receiving a generic summary. Women's accounts indicated some confusion about the trial findings. Conclusions Recommendations that research participants be routinely provided with the results of studies have been made without the benefit of research to show the consequences of doing this or how it should best be managed. Caution is needed, as is more evaluation of how feedback of results should be handled, and assessment of the risks, benefits, and costs

Patients' accounts of being removed from their general practitioner's list: qualitative study

Objective To explore patients' accounts of being removed from a general practitioner's list. Design Qualitative analysis of semistructured interviews. Setting Patients' homes in Leicestershire. Participants 28 patients who had recently been removed from a general practitioner's list. Results The removed patients gave an account of themselves as having genuine illnesses needing medical care. In putting their case that their removal was unjustified, patients were concerned to show that they were “good” patients who complied with the rules that they understood to govern the doctor-patient relationship: they tried to cope with their illness and follow medical advice, used general practice services “appropriately,” were uncomplaining, and were polite with doctors. Removed patients also used their accounts to characterise the removing general practitioner as one who broke the lay rules of the doctor-patient relationship. These “bad” general practitioners were rude, impersonal, uncaring, and clinically incompetent and lied to patients. Patients felt very threatened by being removed from their general practitioner's list; they experienced removal as an attack on their right to be an NHS patient, as deeply distressing, and as stigmatising. Conclusions Removal is an overwhelmingly negative and distressing experience for patients. Many of the problems encountered by removed patients may be remediable through general practices having an explicit policy on removal and procedures in place to help with “difficult” patients

Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter?

Background: The prompt availability of medications to manage symptoms is key to high quality end-of-life care and anticipatory prescribing of these drugs is thought good practice. This study explored the challenges encountered by primary and community health professionals in Leicestershire and Rutland related to anticipatory prescribing when caring for terminally ill patients who wish to remain at home to die. Method: A qualitative study was conducted using eight focus groups (54 participants) and nine individual interviews with a purposively sampled range of health professionals providing care for people who wished to die at home. Themes were identified iteratively via constant comparison. Results: Challenges fell into four categories: resourcing concerns, professional expertise/experience, professionals’ relationships with patients, and professionals’ relationships with other professionals. The latter included the most serious perceived challenges. Links between community and hospital care providers and between ‘usual’ hours and ‘out-of-hours’ care providers were seen as particularly unstable. Conclusions: These findings suggest that building and maintaining trusting, responsive, personal links between professionals, both within and between teams, is essential when implementing good practice guidelines about anticipatory end-of-life prescribing in the community. The need for good communication and relationships between patients and professionals and maintaining expertise and confidence in end-of-life care are also key factors in the effective use of anticipatory prescribing for symptom management for dying patients

Managing communication with young people who have a potentially life-threatening chronic illness: qualitative study of patients and parents

Objectives: To examine young people's and parents' accounts of communication about cancer in childhood. Design: Semistructured interviews analysed using the constant comparative method. Setting: Paediatric oncology unit. Participants: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8­-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour. Results: Most parents described acting in an executive-­like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors. Conclusions: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients

Consistency in research ethics committee decision-making: a controlled comparison

There has been longstanding interest in the consistency of decisions made by research ethics committees (RECs) in the UK, but most of the evidence has come from single studies submitted to multiple committees. A systematic comparison was carried out of the decisions made on 18 purposively selected applications, each of which was reviewed independently by three different RECs in a single strategic health authority. Decisions on 11 applications were consistent, but disparities were found among RECs on decisions on seven applications. An analysis of the agreement between decisions of RECs yielded an overall measure of agreement of k = 0.286 (95% confidence interval 20.06 to 0.73), indicating a level of agreement that, although probably better than chance, may be described as ‘‘slight’’. The small sample size limits the robustness of these findings. Further research on reasons for inconsistencies in decision making between RECs, and on the importance of such inconsistencies for a range of arguments, is needed