Sue Ziebland

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.

Effects of fruit and vegetable consumption on plasma antioxidant concentrations and blood pressure: a randomised controlled trial

BACKGROUND High dietary intakes of fruit and vegetables are associated with reduced risks of cancer and cardiovascular disease. Short-term intensive dietary interventions in selected populations increase fruit and vegetable intake, raise plasma antioxidant concentrations, and lower blood pressure, but long-term effects of interventions in the general population are not certain. We assessed the effect of an intervention to increase fruit and vegetable consumption on plasma concentrations of antioxidant vitamins, daily fruit and vegetable intake, and blood pressure. METHODS We undertook a 6-month, randomised, controlled trial of a brief negotiation method to encourage an increase in consumption of fruit and vegetables to at least five daily portions. We included 690 healthy participants aged 25-64 years recruited from a primary-care health centre. FINDINGS Plasma concentrations of alpha-carotene, beta-carotene, lutein, beta-cryptoxanthin, and ascorbic acid increased by more in the intervention group than in controls (significance of between-group differences ranged from p=0.032 to 0.0002). Groups did not differ for changes in lycopene, retinol, alpha-tocopherol, gamma-tocopherol, or total cholesterol concentrations. Self-reported fruit and vegetable intake increased by a mean 1.4 (SD 1.7) portions in the intervention group and by 0.1 (1.3) portion in the control group (between-group difference=1.4, 95% CI 1.2-1.6; p<0.0001). Systolic blood pressure fell more in the intervention group than in controls (difference=4.0 mm Hg, 2.0-6.0; p<0.0001), as did diastolic blood pressure (1.5 mm Hg, 0.2-2.7; p=0.02). INTERPRETATION The effects of the intervention on fruit and vegetable consumption, plasma antioxidants, and blood pressure would be expected to reduce cardiovascular disease in the general population.

Is ‘watchful waiting’ a real choice for men with prostate cancer? A qualitative study

Objective To understand what leads men to choose ‘watchful waiting’ rather than active treatment for cancer of the prostate.

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.

The Effect of Joint Interviewing on the Performance of Gender

The authors report a series of controlled comparisons of fifty-eight one-to-one qualitative interviews and thirty-seven mixed-sex joint interviews on the same health-related topics. Their analysis identifies comparative keyword frequencies and is supported by qualitative investigations of keywords in context, drawing on existing relevant knowledge of common gender differences in language choice. Gender differences are reduced and womens perspectives are more prominent in joint interviews, so researchers wanting to find out about mens experiences concerning health-related topics such as those associated with fatherhood may find out more in one-to-one interviews with men. The greater readiness of men to engage in gender-stereotyped behavior in sole interviews, most of which involved a female interviewer, suggests that an interviewers gender identity is perceived as somewhat neutral by comparison with the considerable salience of the gender of a joint respondent. This finding potentially contributes to knowledge of the qualitative interview as a special form of institutional talk.

Using a national archive of patient experience narratives to promote local patient-centered quality improvement: an ethnographic process evaluation of ‘accelerated’ experience-based co-design

Objectives To evaluate an accelerated form of experience-based co-design (EBCD), a type of participatory action research in which patients and staff work together to improve quality; to observe how acceleration affected the process and outcomes of the intervention. Methods An ethnographic process evaluation of an adapted form of EBCD was conducted, including observations, interviews, questionnaires and documentary analysis. Whilst retaining all components of EBCD, the adapted approach replaced local patient interviews with secondary analysis of a national archive of patient experience narratives to create national trigger films; shortened the timeframe; and employed local improvement facilitators. It was tested in intensive care and lung cancer in two English National Health Service (NHS) hospitals. A total of 96 clinical staff (primarily nursing and medical), and 63 patients and family members participated in co-design activities. Results The accelerated approach proved acceptable to staff and patients; using films of national rather than local narratives did not adversely affect local NHS staff engagement, and may have made the process less threatening or challenging. Local patients felt the national films generally reflected important themes although a minority felt they were more negative than their own experience. However, they served their purpose of ‘triggering’ discussion between patients and staff, and the resulting 48 co-design (improvement) activities across the four pathways were similar to those in EBCD, but achieved more quickly and at lower cost. Conclusions Accelerated EBCD offers a rigorous and relatively cost-effective patient-centered quality improvement approach.

People sometimes react funny if they're not told enough: women's views about the risks of diagnostic laparoscopy.

Objectives  To explore womens views about the risks and benefits of diagnostic laparoscopy in the investigation of chronic pelvic pain, including how much information it is thought appropriate to give about three specific risks: death, major complications and the chance that the procedure would have an inconclusive result.

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.

Measuring the effects of online health information for patients: item generation for an e-health impact questionnaire.

Objective The internet is a valuable resource for accessing health information and support. We are developing an instrument to assess the effects of websites with experiential and factual health information. This study aimed to inform an item pool for the proposed questionnaire. Methods Items were informed through a review of relevant literature and secondary qualitative analysis of 99 narrative interviews relating to patient and carer experiences of health. Statements relating to identified themes were re-cast as questionnaire items and shown for review to an expert panel. Cognitive debrief interviews (n = 21) were used to assess items for face and content validity. Results Eighty-two generic items were identified following secondary qualitative analysis and expert review. Cognitive interviewing confirmed the questionnaire instructions, 62 items and the response options were acceptable to patients and carers. Conclusion Using a clear conceptual basis to inform item generation, 62 items have been identified as suitable to undergo further psychometric testing. Practice implications The final questionnaire will initially be used in a randomized controlled trial examining the effects of online patients experiences. This will inform recommendations on the best way to present patients’ experiences within health information websites.

An overview of self-administered health literacy instruments.

With the increasing recognition of health literacy as a worldwide research priority, the development and refinement of indices to measure the construct is an important area of inquiry. Furthermore, the proliferation of online resources and research means that there is a growing need for self-administered instruments. We undertook a systematic overview to identify all published self-administered health literacy assessment indices to report their content and considerations associated with their administration. A primary aim of this study was to assist those seeking to employ a self-reported health literacy index to select one that has been developed and validated for an appropriate context, as well as with desired administration characteristics. Systematic searches were carried out in four electronic databases, and studies were included if they reported the development and/or validation of a novel health literacy assessment measure. Data were systematically extracted on key characteristics of the instruments: breadth of construct (“generic” vs. “content- or context- specific” health literacy), whether it was an original instrument or a derivative, country of origin, administration characteristics, age of target population (adult vs. pediatric), and evidence for validity. 35 articles met the inclusion criteria. There were 27 original instruments (27/35; 77.1%) and 8 derivative instruments (8/35; 22.9%). 22 indices measured “general” health literacy (22/35; 62.9%) while the remainder measured condition- or context- specific health literacy (13/35; 37.1%). Most health literacy measures were developed in the United States (22/35; 62.9%), and about half had adequate face, content, and construct validity (16/35; 45.7%). Given the number of measures available for many specific conditions and contexts, and that several have acceptable validity, our findings suggest that the research agenda should shift towards the investigation and elaboration of health literacy as a construct itself, in order for research in health literacy measurement to progress.