Ann McPherson

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.

Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness).

Objectives  This paper outlines an approach to analysing qualitative textual data from interviews and discusses how to ensure analytic procedures are appropriately rigorous.

Interviews and Internet Forums: A Comparison of Two Sources of Qualitative Data

We report a comparative keyword analysis of interviews and Internet postings involving people with breast and prostate cancer and discussion of sexual health. Interviewees produce retrospective accounts, their content guided by interviewers’ questions, which might elicit rich biographical and contextual details. Internet exchanges concern participants’ current experiences and contain detailed accounts of disease processes, medical procedures, bodily processes, and, in the case of sexual health, sexual practices. They are used by participants to exchange information and support in a relatively anonymous context. Because of the ease with which large amounts of such archived Internet materials can be accessed and analyzed, this source has considerable potential for direct observation of illness experiences, although some disadvantages also exist. This reverses an earlier situation where observational research was more laborious than qualitative interviews. Observational material for research purposes is, through the Internet, now easy to obtain and produces naturalistic data.

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.

Health communication and adolescents: what do their emails tell us?

BACKGROUND It is widely known that barriers exist in communication between adolescents and health professionals. However, little is known about the actual language used by young people articulating such difficulties and whether email might allow them to overcome these problems. OBJECTIVES The aims of this study were to investigate concerns and difficulties relating to communication among adolescents seeking online health advice. METHODS The study design was a corpus linguistic analysis of a million-word adolescent health email database based on 62 794 emails from young people requesting health advice from a prominent UK-hosted and doctor-led website. RESULTS Young people reported various concerns about their health. They described numerous difficulties in disclosing such concerns to other people, in particular to parents and doctors. However, they readily expressed their concerns by email, displaying elevated levels of directness, particularly in relation to potentially sensitive or embarrassing topics. CONCLUSION Email has the potential to facilitate and supplement face-to-face consultations with health professionals. Increased adoption of email by health providers may be an efficient means of engaging with a generation often reluctant to access more traditional health care services and thus encourage them to enter the primary care setting more readily.

Women's information needs about ductal carcinoma in situ before mammographic screening and after diagnosis: a qualitative study

Objectives: To explore the attitudes of women with screen-detected ductal carcinoma in situ (DCIS) towards information provision for mammographic screening. Setting: Respondents recruited throughout the UK during 2003–2004. Methods: Qualitative study using semi-structured interviews. Participants: Ten women diagnosed with DCIS as a result of mammographic screening. Results: None of the women with DCIS had heard of it before their diagnosis. Most would have liked more information about DCIS when invited for routine screening. Comprehensive information about the benefits and risks of mammographic screening, including the possibility of a DCIS diagnosis, would have enabled them to make a fully informed choice about attending for screening. Conclusion: DCIS is an inescapable outcome of mammographic screening and, until it is better understood, the screening industry needs to inform women about its existence and the lack of understanding of its natural history and management. Being alerted before screening to the possibility of a DCIS diagnosis and the uncertainty associated with it would better enable women to make fully informed decisions about whether to attend and could help to alleviate some of the distress women currently feel when diagnosed with DCIS.

Why men in the United Kingdom still want the prostate specific antigen test.

The prostate specific antigen (PSA) test is widely used to screen men for prostate cancer, but its value in diagnosing prostate cancer in asymptomatic men is controversial. In 2001, the U.K. Department of Health introduced the Prostate Cancer Risk Management Programme (PCRMP), through which men are given relatively detailed information before they make a final decision about a test. Little is known about mens experiences of the test since this program was introduced. We report an analysis of interviews with 30 men who were tested, or considered having a test, since the PCRMP was introduced. Our analysis suggests that mens views of the PSA test are dominated by their construction of testing as responsible health behavior and their perception of PSA as “just a blood test.” Mens accounts also suggest that poor communication about the uncertainty of the test—and about treatment for prostate cancer—also persists.

'A mastectomy for something that wasn't even truly invasive cancer'. Women's understandings of having a mastectomy for screen-detected DCIS: a qualitative study.

Objectives To explore womens understandings of having a mastectomy for screen-detected ductal carcinoma in situ (DCIS). Setting Participants recruited throughout the United Kingdom and interviewed in their own homes by an anthropologist. Methods Qualitative study using semi-structured interviews and thematic analysis. Thirty-five women with screen-detected DCIS were interviewed, of whom twenty had a mastectomy. Results A qualitative thematic analysis of womens understandings of having a mastectomy for DCIS identified four key themes: understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions. Women were often concerned that a mastectomy for screen-detected DCIS was a ‘drastic’ treatment for an asymptomatic, precancerous condition of which they had been previously unaware. Some questioned why they were treated with such urgency, even suspecting that their clinicians were responding to targets. Conclusion Given the uncertainties about DCIS and its complexity, it is important that women have the information they need to make treatment decisions. Better information about the uncertainties and the rationale for using mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions.

The use of patients’ stories by self‐help groups: a survey of voluntary organizations in the UK on the register of the College of Health

First‐hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients’ stories are being collected and used by self‐help and voluntary groups.

Women's accounts of the physical sensation of chorionic villus sampling and amniocentesis: expectations and experience

OBJECTIVE to understand womens expectations and experience of discomfort during chorionic villus sampling (CVS) and amniocentesis, and relate them to aspects of clinical practice. DESIGN thematic analysis of narrative interviews. Interviews were recorded and transcribed verbatim, coded and analysed using computer-assisted qualitative data analysis software. PARTICIPANTS AND SETTING sample recruited nationally for two wider studies of experiences of antenatal screening (n=47) and experiences of ending a pregnancy for fetal abnormality (n=40). Of these, 31 women had experienced amniocentesis and/or CVS at least once. FINDINGS most women found the procedures less painful than expected. A smaller group were shocked or surprised at the sensation, and were worried that they had jumped and that the needle might have damaged the baby. A few found it very painful, using vivid imagery of being stabbed or punctured. However, even those who found it worse than expected felt it was worth the pain to get a definite diagnosis. Women identified a range of factors affecting their experience, including levels of anxiety, prior experience or knowledge of the procedures, levels of information provided, trust in the skill of the operator, or reassurance and empathy of the staff involved. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE the needs of a small minority of women who find CVS or amniocentesis shocking and/or painful may be overlooked. A review of pre-test information and procedures is recommended to ensure that women are better prepared for possible physical sensations during the procedures to address the needs of this minority.