Peter Allmark

Diagnostic delay in lung cancer: a qualitative study.

AIM This paper is a report of a study to identify factors influencing delay in reporting symptoms of lung cancer. BACKGROUND Lung cancer accounts for approximately 5% of deaths in the Western world. For up to 80% of patients, their disease is inoperable because it has been diagnosed too late. This suggests that reducing diagnostic delay could reduce mortality. METHODS This qualitative study was conducted from July 2005 to May 2006 in community and hospital settings in the United Kingdom. A purposive sample of people diagnosed with lung cancer in the previous 6 months (n = 18), and two 18-month survivors took part in individual interviews. FINDINGS Participants reported a range of interrelating factors that influenced delay in reporting symptoms of lung cancer. Barriers to symptom reporting included symptom experience, lack of knowledge and fear. Blame and stigma because of smoking were also prevalent influences, as well as cultural factors, non-standard patterns of healthcare utilization and underlying stoical attitudes. The only factor to emerge as helpful in overcoming delay was the role families played. CONCLUSION Lack of knowledge and awareness about lung cancer could be addressed by better education of the public. Social marketing is a way of developing education messages which tackle cultural influences on treatment-seeking delay. Nurses have a potential role in developing and disseminating those messages.

Death with dignity

The purpose of this article is to develop a conception of death with dignity and to examine whether it is vulnerable to the sort of criticisms that have been made of other conceptions. In this conception “death” is taken to apply to the process of dying; “dignity” is taken to be something that attaches to people because of their personal qualities. In particular, someone lives with dignity if they live well (in accordance with reason, as Aristotle would see it). It follows that health care professionals cannot confer on patients either dignity or death with dignity. They can, however, attempt to ensure that the patient dies without indignity. Indignities are affronts to human dignity, and include such things as serious pain and the exclusion of patients from involvement in decisions about their lives and deaths. This fairly modest conception of death with dignity avoids the traps of being overly subjective or of viewing the sick and helpless as “undignified”.

Improving the quality of consent to randomised controlled trials by using continuous consent and clinician training in the consent process

Objective: To assess whether continuous consent, a process in which information is given to research participants at different stages in a trial, and clinician training in that process were effective when used by clinicians while gaining consent to the Total Body Hypothermia (TOBY) trial. The TOBY trial is a randomised controlled trial (RCT) investigating the use of whole-body cooling for neonates with evidence of perinatal asphyxia. Obtaining valid informed consent for the TOBY trial is difficult, but is a good test of the effectiveness of continuous consent. Methods: Semistructured interviews were conducted with 30 sets of parents who consented to the TOBY trial and with 10 clinicians who sought it by the continuous consent process. Analysis was focused on the validity of parental consent based on the consent components of competence, information, understanding and voluntariness. Results: No marked problems with consent validity at the point of signature were observed in 19 of 27 (70%) couples. Problems were found mainly to lie with the competence and understanding of the parents: mothers, particularly, had problems with competence in the early stages of consent. Problems in understanding were primarily to do with side effects. Problems in both competence and understanding were observed to reduce markedly, particularly for mothers, in the post-signature phase, when further discussion took place. Randomisation was generally understood but unpopular. Information was not always given by clinicians in stages during the short period available before parents gave consent. Most clinicians, however, were able to give follow-up information. Discussion: Consent validity was found to compare favourably with similar trials examined in the Euricon study. Conclusion: Adopting the elements of the continuous consent process and clinician training in RCTs should be considered by researchers, particularly when they have concerns about the quality of consent they are likely to obtain by using a conventional process.

Ethical Issues in the Use of In-Depth Interviews: Literature Review and Discussion

This paper reports a literature review on the topic of ethical issues in in-depth interviews. The review returned three types of article: general discussion, issues in particular studies, and studies of interview-based research ethics. Whilst many of the issues discussed in these articles are generic to research ethics, such as confidentiality, they often had particular manifestations in this type of research. For example, privacy was a significant problem as interviews sometimes probe unexpected areas. For similar reasons, it is difficult to give full information of the nature of a particular interview at the outset, hence informed consent is problematic. Where a pair is interviewed (such as carer and cared-for) there are major difficulties in maintaining confidentiality and protecting privacy. The potential for interviews to harm participants emotionally is noted in some papers, although this is often set against potential therapeutic benefit. As well as these generic issues, there are some ethical issues fairly specific to in-depth interviews. The problem of dual role is noted in many papers. It can take many forms: an interviewer might be nurse and researcher, scientist and counsellor, or reporter and evangelist. There are other specific issues such as taking sides in an interview, and protecting vulnerable groups. Little specific study of the ethics of in-depth interviews has taken place. However, that which has shows some important findings. For example, one study shows participants are not averse to discussing painful issues provided they feel the study is worthwhile. Some papers make recommendations for researchers. One such is that they should consider using a model of continuous (or process) consent rather than viewing consent as occurring once, at signature, prior to the interview. However, there is a need for further study of this area, both philosophical and empirical.

How should public health professionals engage with lay epidemiology

“Lay epidemiology” is a term used to describe the processes through which health risks are understood and interpreted by laypeople. It is seen as a barrier to public health when the public disbelieves or fails to act on public health messages. Two elements to lay epidemiology are proposed: (a) empirical beliefs about the nature of illness and (b) values about the place of health and risks to health in a good life. Both elements have to be dealt with by effective public health schemes or programmes, which would attempt to change the public’s empirical beliefs and values. This is of concern, particularly in a context in which the lay voice is increasingly respected. Empirically, the scientific voice of standard epidemiology should be deferred to by the lay voice, provided a clear distinction exists between the measurement of risk, which is empirical, and its weighting, which is based on values. Turning to engagement with values, health is viewed to be an important value and is discussed and reflected on by most people. Public health professionals are therefore entitled and advised to participate in that process. This view is defended against some potential criticisms.

Should research samples reflect the diversity of the population

Recent research governance documents say that the body of research evidence must reflect population diversity. The response to this needs to be more sophisticated than simply ensuring minorities are present in samples. For quantitative research looking primarily at treatment effects of drugs and devices four suggestions are made. First, identify where the representation of minorities in samples matters—for example, where ethnicity may cause different treatment effects. Second, where the representation of a particular group matters then subgroup analysis of the results will usually be necessary. Third, ensuring representation and subgroup analysis will have costs; deciding on whether such representation is worthwhile will involve cost benefit analysis. Fourth, the representation of minorities should not be seen as mainly a locality issue. For qualitative research it is argued that the representation of diversity is often important. Given the small samples of many qualitative projects, however, the best way to ensure representation occurs is to allow a proliferation of such research, not to stipulate such representation in samples.

Assessing the health benefits of advice services: using research evidence and logic model methods to explore complex pathways.

Poverty is positively associated with poor health; thus, some healthcare commissioners in the UK have pioneered the introduction of advice services in health service locations. Previous systematic reviews have found little direct evidence for a causal relationship between the provision of advice and physical health and limited evidence for mental health improvement. This paper reports a study using a broader range of types of research evidence to construct a conceptual (logic) model of the wider evidence underpinning potential (rather than only proven) causal pathways between the provision of advice services and improvements in health. Data and discussion from 87 documents were used to construct a model describing interventions, primary outcomes, secondary and tertiary outcomes following advice interventions. The model portrays complex causal pathways between the intervention and various health outcomes; it also indicates the level of evidence for each pathway. It can be used to inform the development of research designed to evaluate the pathways between interventions and health outcomes, which will determine the impact on health outcomes and may explain inconsistencies in previous research findings. It may also be useful to commissioners and practitioners in making decisions regarding development and commissioning of advice services.

Social research for a multiethnic population: do the research ethics and standards guidelines of UK Learned Societies address this challenge?

There is increasing recognition in the UK that social science research should generate an evidence base that reflects the ethnic diversity of the population and informs positive developments in public policy and programmes for all. However, describing and understanding ethnic diversity, and associated disadvantage, is far from straightforward. In practice, the ethical and scientific arguments around whether and how to incorporate ethnicity into policy-relevant social research are complex and contentious. In particular, untheorised or insensitive inclusion of data on ethnic ‘groups’ can have negative consequences. The present investigation begins to explore the extent to which social scientists have access to advice and guidance in this area of research. Specifically, the paper examines how ethnic diversity is explicitly or implicitly considered within the research ethics and scientific standard guidance provided by UK social science Learned Societies to their members. The review found little in the way of explicit attention to ethnic diversity in the guidance documents, but nevertheless identified a number of pertinent themes. The paper compiles and extrapolates these themes to present a tentative set of principles for social scientists to debate and further develop.

Should desperate volunteers be included in randomised controlled trials

Randomised controlled trials (RCTs) sometimes recruit participants who are desperate to receive the experimental treatment. This paper defends the practice against three arguements that suggest it is unethical first, desperate volunteers are not in equipoise. Second clinicians, entering patients onto trials are disavowing their therapeutic obligation to deliver the best treatment; they are following trial protocols rather than delivering individualised care. Research is not treatment; its ethical justification is different. Consent is crucial. Third, desperate volunteers do not give proper consent: effectively, they are coerced. This paper responds by advocating a notion of equipoise based on expert knowledge and widely shared values. Where such collective, expert equipoise exists there is a prima facie case for an RCT. Next the paper argues that trial entry does not involve clinicians disavowing their therapeutic obligation; individualised care based on insufficient evidence is not in patients best interest. Finally, it argues that where equipoise exists it is acceptable to limit access to experimental agents; desperate volunteers are not coerced because their desperation does not translate into a right to receive what they desire.

Expectations and patients’ experiences of obesity prior to bariatric surgery: a qualitative study

Objectives This study aimed to understand the experiences and expectations of people seeking bariatric surgery in England and identify implications for behavioural and self-management interventions. Design A qualitative study using modified photovoice methods, triangulating photography with semistructured indepth interviews analysed using framework techniques. Setting Areas served by two bariatric surgery multidisciplinary teams in the north of England. Participants 18 adults (14 women and 4 men) who accepted for bariatric surgery, and were aged between 30 and 61 years. Participants were recruited through hospital-based tier 4 bariatric surgery multidisciplinary teams. Results The experiences of participants indicates the nature and extent of the burden of obesity. Problems included stigmatisation, shame, poor health, physical function and reliance on medications. Participants expected surgery to result in major physical and psychological improvement. They described how this expectation was rooted in their experiences of stigma and shame. These feelings were reinforced by previous unsuccessful weight loss attempts. Participants expected extreme and sometimes unrealistic levels of sustained weight loss, as well as improvements to physical and mental health. The overall desire and expectation of bariatric surgery was of ‘normality’. Participants had received previous support from clinicians and in weight management services. However, they reported that their expectations of surgery had not been reviewed by services, and expectations appeared to be unrealistic. Likewise, their experience of stigmatisation had not been addressed. Conclusions The unrealistic expectations identified here may negatively affect postoperative outcomes. The findings indicate the importance of services addressing feelings of shame and stigmatisation, and modifying patients expectations and goals for the postoperative period.