Alison Chapple

Stigma, shame, and blame experienced by patients with lung cancer: qualitative study

Abstract Objectives To draw on narrative interviews with patients with lung cancer and to explore their perceptions and experience of stigma. Design Qualitative study. Setting United Kingdom. Participants 45 patients with lung cancer recruited through several sources. Results Participants experienced stigma commonly felt by patients with other types of cancer, but, whether they smoked or not, they felt particularly stigmatised because the disease is so strongly associated with smoking. Interaction with family, friends, and doctors was often affected as a result, and many patients, particularly those who had stopped smoking years ago or had never smoked, felt unjustly blamed for their illness. Those who resisted victim blaming maintained that the real culprits were tobacco companies with unscrupulous policies. Some patients concealed their illness, which sometimes had adverse financial consequences or made it hard for them to gain support from other people. Some indicated that newspaper and television reports may have added to the stigma: television advertisements aim to put young people off tobacco, but they usually portray a dreadful death, which may exacerbate fear and anxiety. A few patients were worried that diagnosis, access to care, and research into lung cancer might be adversely affected by the stigma attached to the disease and those who smoke. Conclusion Patients with lung cancer report stigmatisation with far reaching consequences. Efforts to help people to quit smoking are important, but clinical and educational interventions should be presented with care so as not to add to the stigma experienced by patients with lung cancer and other smoking related diseases.

What makes British general practitioners take part in a quality improvement scheme

Objectives: To understand the reasons for the apparent success of a quality improvement scheme designed to produce widespread changes in chronic disease management in primary care. Methods: Purposeful sample of 36 primary care staff, managers and specialists. Qualitative analysis of 27 interviews in East Kent Health Authority area, where, over a three-year period, more than three-quarters of general practitioners (GPs) had enrolled in a quality improvement programme which required them to meet challenging chronic disease management targets (PRImary Care Clinical Effectiveness - PRICCE). Results: Major changes in clinical practice appeared to have taken place as a result of participation in PRICCE. The scheme was significantly dependent on leadership from the health authority and on local professional support. Factors that motivated GPs to take part in the project included: a desire to improve patient care; financial incentives; maintenance of professional autonomy in how to reach the targets; maintenance of professional pride; and peer pressure. Good teamworking was essential to successful completion of the project and often improved as a result of taking part. The scheme included a combination of interventions known to be effective in producing professional behavioural change. Conclusions: When managerial vision is aligned to professional values, and combined with a range of interventions known to influence professional behaviour including financial incentives, substantial changes in clinical practice can result. Lessons are drawn for future quality improvement programmes in the National Health Service.

Lay understanding of genetic disease: a British study of families attending a genetic counseling service.

Although lay people know that various diseases can be inherited, the idea that unhealthy life styles are the crucial cause of ill health has been promoted by health education policy in the United Kingdom. However, a new paradigm seems to be developing. The medical profession is increasingly using “genetics” to explain ill health, and people are being referred to geneticists for information and counseling. Lay conceptions of genetic disease emerged during this qualitative study of the process of genetic counseling. The results reported in this paper suggest that many lay people lack knowledge of genetics and inheritance, and that there is considerable stigma attached to genetic disease. Misconceptions and fears may not always be recognized or resolved during the process of genetic counseling. The implications of such misunderstandings and beliefs are considered in this paper.

The Role of Humor for Men with Testicular Cancer

In this article, the authors examine how 45 men talked about “pure” and “applied” humor in qualitative interviews about their experience of testicular cancer. Most described using applied humor in work and social settings to challenge assumptions about the disease, and in health settings to manage feelings, hide embarrassment, reduce tension, share a sense of solidarity with others, or encourage others to examine themselves. Men also described their usually positive reaction to jokes made by others; jokes helped to dispel tension and reassured men that they were being treated as normal. In a few accounts, men revealed how humor was hurtful. They were sometimes upset about jokes made by others, or by the idea of jokes being made, fearing humiliation and stigma. Humor might ease difficult interactions, but our results suggest that clinicians and others should be careful not to initiate humor without a clear lead from the patient.

Viewing the body after bereavement due to a traumatic death: qualitative study in the UK

Objective Whether bereaved relatives should be encouraged to view the body after a traumatic death is uncertain. This analysis of narrative interviews interprets people’s accounts of why and how they decided whether to view the body and their emotional reactions to this, immediately and at a later stage. Design In depth interviews with qualitative analysis. Participants A maximum variation sample of 80 people bereaved because of suicide or other traumatic death. Setting Most people were interviewed in their homes. Results For those who had the option, decisions about seeing the body varied. Some wanted someone else to identify the body, because they feared how it might look or preferred to remember their relative as they had been in life. Those who had wanted to see the body gave various reasons beyond the need to check identity. Some felt they ought to see the body. Others felt that the body had not lost its social identity, so wanted to make sure the loved one was “being cared for” or to say goodbye. Some people wanted to touch the body, in privacy, but the coroner sometimes allowed this only after the postmortem examination, which made relatives feel that the body had become police property. Seeing the body brought home the reality of death; it could be shocking or distressing, but, in this sample, few who did so said they regretted it. Conclusions Even after a traumatic death, relatives should have the opportunity to view the body, and time to decide which family member, if any, should identify remains. Officials should prepare relatives for what they might see, and explain any legal reasons why the body cannot be touched. Guidelines for professional practice must be sensitive to the needs and preferences of people bereaved by traumatic death. The way that relatives refer to the body can be a strong indication for professionals about whether the person who died retains a social identity for the bereaved.

Why men with prostate cancer want wider access to prostate specific antigen testing: qualitative study

Abstract Objectives: To explore the attitudes of men with confirmed or suspected prostate cancer to testing for prostate specific antigen. Design: Qualitative interview study with a purposive sample. Setting: Great Britain. Participants: 52 men with suspected or confirmed prostate cancer, recruited through general practitioners, urologists, patient support groups, and charities. Results: Almost all men remembered their prostate specific antigen test but recalled being given little information beforehand. Arguments in favour of increased access to testing included the belief that early diagnosis would reduce mortality, improve quality of life, and save the NHS money. Men also thought that a national screening programme should be available because symptoms can be ambiguous, screening for cancer is responsible health behaviour, and screening would encourage men to be tested. Four men who opposed a screening programme had gathered information alerting them to uncertainty about the benefits of treatment, and two regretted that they had been tested. Others thought that access to testing is restricted in the United Kingdom because of a lack of government backing, concerns about the accuracy of the test, and a lack of resources. Conclusions: The few men in this study who subscribed to the argument that evidence of the benefits of treatment is a prerequisite for a screening programme did not want to see screening introduced. Men who proposed an alternative set of principles for testing gave reasons that did not all relate to overoptimism about the benefits of early diagnosis. People who plan services and people who respond to requests for testing need to understand mens perspectives and concerns.

Variations in use of tertiary cardiac services in part of North-West England

We assess the extent to which the need for tertiary cardiac care is being met uniformly within two Health Authorities in North-West England. We analyse small-area data from 1993-1996 on standardised rates of investigation (angiography) and surgery (bypass grafts and angioplasty). Utilisation by electoral ward is shown to be related to material deprivation. Small areas in which the Asian population is high have significantly fewer angiograms and angioplasties than might be expected according to need, while there is some evidence that women do not receive the levels of bypass surgery that might be expected.

How the Internet is changing the experience of bereavement by suicide: A qualitative study in the UK

The aim of this qualitative study was to explore how Internet support may be changing the experiences of people who have been bereaved by suicide. Forty narrative interviews about the (whole) experience of being bereaved by suicide were conducted with a maximum variation sample of people living in the UK. Interviews were transcribed for thematic analysis. The analysis explores several ways in which the Internet has made a difference to the aftermath of the death. These include the use of e-mail and social networking sites to inform others about the death, making sense of the events and gaining support from an Internet community of others who had been similarly bereaved and setting up website memorials. A few people preferred not to use the Internet for this purpose or had no access to a computer. Few adverse consequences of Internet communities were mentioned. In conclusion we found evidence that the Internet is transforming the experience of bereavement by suicide, most dramatically through providing access to other people’s experiences.

Parental guilt: The part played by the clinical geneticist.

Parents of children born with a disability often suffer feelings of inappropriate guilt and shame. Although some genetic counselors see their main task to be that of diagnosis and education, they also aim to relieve these feelings of guilt and shame. Little is known about the process of genetic counseling, and whether or not counselors achieve this aim. An exploratory study of one clinic, and one geneticist working with 30 families, using video recordings and taped interviews, indicated that this particular doctor sometimes succeeded in reducing guilt, either intentionally or unintentionally, but on one occasion guilt was iatrogenic, and increased rather than decreased. Further research is needed to examine other types and other styles of genetic counseling so that in future iatrogenic guilt can be avoided, and the distressing aspects of inappropriate guilt and shame reduced as much as possible.

It can't be very important because it comes and goes—patients' accounts of intermittent symptoms preceding a pancreatic cancer diagnosis: a qualitative study

Objective This article explores how people with pancreatic cancer interpreted prediagnostic signs and symptoms, and what triggered them to seek medical help for symptoms that occurred intermittently. Design Thematic analysis of prediagnostic symptom descriptions drawn from a qualitative interview study of people with experiences of pancreatic cancer. Participants 40 people affected by pancreatic cancer (32 patients and 8 relatives of people who had died). Age at interview ranged from 35 to 84 years; 55% were men; and 57.5% of patients had been offered potentially curative surgery. Setting Respondents interviewed at home were recruited from different parts of the UK during 2009/2010. Results Analysis of the interviews suggested that intermittent symptoms were not uncommon in the months, or even years, before diagnosis but that the fact that the symptom did not persist was often taken by the patient as a reassuring indicator that it could not be ‘very important’. Such symptoms were rarely acted upon until a pattern became apparent, the frequency of symptom episodes increased, there was a change in the nature of the intermittent symptoms or additional symptom(s) appeared. These findings build on social science theories of consultation behaviour. Conclusions Our study—the largest reported collection of qualitative interviews with people with pancreatic cancer—reports for the first time that symptoms of an intermittent nature may precede a pancreatic cancer diagnosis. Patients (and potentially their doctors as well) may be falsely reassured by symptoms that come and go. Pancreatic cancer might be identified at a stage where curative treatment is more likely if there were greater awareness that intermittent gastrointestinal symptoms can have a serious cause, and if patients with intermittent pancreatitis-like symptoms were investigated more readily.