Methodological and Practical Issues in Cross-National Qualitative Research: Lessons From the Literature and a Comparative Study of the Experiences of People Receiving a Diagnosis of Cancer.

Social science and health services research have much to gain from cross-national qualitative research, yet the logistics involved in setting up such studies, especially where different languages and health systems are involved, can seem daunting. In this article, we highlight issues to consider and suggest some solutions, drawing both on the literature and examples from our own cross-national research. We highlight the issues involved with synchronizing staffing and funding, ensuring comparable methods, project management, and communication between research groups, the consequences of the different criteria for ethical approval for recruitment, the challenge of working with multiple languages, teams involving different disciplines and skill sets, and coordinating and timing data collection and analysis. The aim of this article is to draw on the literature, which includes several useful insights, as well as reflections from our own cross-national research, to highlight considerations for cross-national qualitative research teams. Our approach is to highlight and discuss potential challenges and suggest potential solutions, using the format of an illustrated literature review.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes. RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Advancing gender equality through the Athena SWAN Charter for Women in Science: an exploratory study of women's and men's perceptions.

BACKGROUND: While in the United Kingdom, Ireland, and Australia, higher education and research institutions are widely engaged with the Athena SWAN Charter for Women in Science to advance gender equality, empirical research on this process and its impact is rare. This study combined two data sets (free- text comments from a survey and qualitative interviews) to explore the range of experiences and perceptions of participation in Athena SWAN in medical science departments of a research-intensive university in Oxford, United Kingdom. METHODS: The study is based on the secondary analysis of data from two projects: 59 respondents to an anonymous online survey (42 women, 17 men) provided relevant free-text comments and, separately, 37 women participated in face-to-face narrative interviews. Free-text survey comments and narrative interviews were analysed thematically using constant comparison. RESULTS: Both women and men said that participation in Athena SWAN had brought about important structural and cultural changes, including increased support for women's careers, greater appreciation of caring responsibilities, and efforts to challenge discrimination and bias. Many said that these positive changes would not have happened without linkage of Athena SWAN to government research funding, while others thought there were unintended consequences. Concerns about the programme design and implementation included a perception that Athena SWAN has limited ability to address longstanding and entrenched power and pay imbalances, persisting lack of work-life balance in academic medicine, questions about the sustainability of positive changes, belief that achieving the award could become an end in itself, resentment about perceived positive discrimination, and perceptions that further structural and cultural changes were needed in the university and wider society. CONCLUSIONS: The findings from this study suggest that Athena SWAN has a positive impact in advancing gender equality, but there may be limits to how much it can improve gender equality without wider institutional and societal changes. To address the fundamental causes of gender inequality would require cultural change and welfare state policies incentivising men to increase their participation in unpaid work in the family, which is beyond the scope of higher education and research policy.

Exploring the information needs of people living with a long-term indwelling urinary catheter: a qualitative study.

AIMS: To explore the information needs of long-term indwelling urinary catheter users, the consequences for patients of inadequate information and how these needs could be met. BACKGROUND: Previous studies have drawn attention to the lack of information given to indwelling catheter users and how users would benefit from more. Little is known about the varied and detailed information needs of long-term indwelling catheter users. DESIGN: A qualitative interpretative approach was used, combining thematic analysis with constant comparison. A diverse sample of people living in the community with a catheter for 3 months or longer was recruited. METHODS: Interviews were conducted using a narrative approach. Thirty-six interviews were conducted in England, Wales and Scotland between 2011-2013. RESULTS: Participants ranged in age from 22-96 years. After having a catheter fitted they wanted more technical information about it and information to help prevent catheter-related physical problems (infection, blockage, leaking), on sexual activity and the siting of catheters and about managing a social life with a catheter. In its absence, patients sometimes experimented with the catheter, learning to live with it through trial and error, used the Internet to find out more, or contacted other patients or organizations. CONCLUSION: Research has consistently shown that indwelling catheter users need to be given more information but some patients still feel poorly informed. Nurses are in a good position to find out what people know, what they need, and to ensure that patients have contact phone numbers for further information and details of reliable websites and support organizations.

Drawing on Accounts of Long-Term Urinary Catheter Use: Design for the "Seemingly Mundane".

The design of the Foley catheter has not changed since 1937. Scientists interested in medical technology tend to focus on state-of-the-art designs for newsworthy specialties rather than the more mundane technologies of daily life. We interviewed 36 people living with a long-term urinary catheter in the United Kingdom, who described limitations of the current catheter design, including infections and complications and consequences for social life and relationships, and their perceptions of whose responsibility it was to improve the design. All took steps to hide the urine bag, but the need to use a catheter and urine bag had, for some, a very detrimental effect on social life and relationships. People living with long-term catheters are relatively isolated at home and dealing with many different underlying health problems, undermining opportunities to speak with a collective patient voice. Qualitative health researchers could act as a conduit to help stimulate new designs.

Comparing transurethral and suprapubic catheterization for long-term bladder drainage: a qualitative study of the patients' perspective.

PURPOSE: To explore why men and women decide to have a suprapubic catheter, how the decision is made, and to compare people's experiences of suprapubic and transurethral catheterization for long-term bladder drainage. DESIGN: Narrative interviews followed by thematic analysis. SUBJECTS AND SETTING: Thirty-six long-term catheter users living in England, Wales, or Scotland were interviewed. The sample included men and women from various socioeconomic backgrounds, with a wide range of conditions. They were aged 22 to 96 years (M = 57 years). METHODS: Interviews lasted between 1 and 3 hours; they were audiotaped and fully transcribed for analysis. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Some respondents were satisfied with or preferred a urethral catheter; others preferred a suprapubic catheter because they perceived that suprapubic catheters led to fewer infections, were more hygienic, more comfortable, improved self-image, allowed a sense of control, and were better suited for sexual relations. Participants also mentioned the decision-making process, including how the decision was made to have a suprapubic catheter and where to insert the catheter at a particular point in the abdomen. Even with a suprapubic catheter, some worried about sex or were put off sexual intimacy because of the catheter. CONCLUSION: Our findings suggest that patients should be better informed before a suprapubic catheter is inserted and that issues such as sex should be raised in consultations when appropriate.

Taboo and the different death? Perceptions of those bereaved by suicide or other traumatic death.

Views differ on how far the subject of death has ever been taboo in Western Society. Walter (1991) criticised the way the 'taboo thesis' has been presented, arguing that it has often been 'grossly overdrawn and lacking in subtlety'. Research suggests that suicide and other traumatic death may be particularly difficult for people to talk about or even acknowledge. We interviewed 80 people bereaved due to suicide, or other traumatic death and used interpretative thematic analysis to consider whether the 'death taboo' is evident in these bereavement narratives. People referred to suicide as a different, even stigmatised, death but we also found that those bereaved through other traumatic death felt that their reactions had to be contained and relatively silent. The exception was those bereaved through terrorism or train crash, who were encouraged to grieve openly and angrily: reactions to deaths which are seen as 'private troubles' differ from reactions to deaths which are seen as 'public issues'. Using a symbolic interactionist approach we conclude that the shock and suddenness of the death is tied up both with the circumstances of the death (suicide, murder, accident, terrorism) and the attendant consequences for the social acceptance of public displays of mourning.

Barriers to shared decisions in the most serious of cancers: a qualitative study of patients with pancreatic cancer treated in the UK.

BACKGROUND: Less than 20% of patients with pancreatic cancer present with localized, potentially curable tumours. Even when potentially curative surgery is possible, mortality is high. Only 20-25% of patients who have had resected ductal adenocarcinoma of the pancreatic head survive 5 years. Other treatments include chemotherapy, radiotherapy and palliative care. AIM: To explore patients' perceptions of barriers to shared decision making in a condition in which shared decision making might be difficult. METHOD: Thematic analysis of narrative interviews with 32 people diagnosed with pancreatic cancer in the UK; interviews with a social scientist, usually in people's homes. RESULTS: We found that barriers to shared decisions include the idea that investigations are conducted to determine whether the patient qualifies for surgery, rather than to establish whether surgery is an option to consider; a sense of being pressured to accept treatment, a sense that in a life-threatening situation, there are no 'real options'; and the confusion that can be caused when clinical opinions differ. CONCLUSION: We need to ask how patients can be expected to engage in an informed, shared decision if they are made to feel that they are one of the 'winners' if they qualify for surgery. When each treatment decision might have serious consequences for a patient's remaining months, we suggest that there is a particularly strong imperative to make sure that the patient is not subject to other people's assumptions about what is best for them and that patients are offered the opportunity to share in decisions.

How users of indwelling urinary catheters talk about sex and sexuality: a qualitative study.

BACKGROUND: An indwelling urinary catheter can solve the problem of incontinence and may be life-saving in individuals with retention, but it can cause problems such as infection and may have a negative impact on body image, sex, and sexuality. AIM: To explore the individual's perceptions of how a long-term urinary catheter can affect body image, sex, and sexuality; and to help GPs to discuss the subject in consultations. DESIGN AND SETTING: Qualitative study of a diverse sample of individuals living with a long-term urinary catheter. Interviews took place all over the UK, usually in the individuals' homes. METHOD: Narrative interviews were audiorecorded, transcribed, and analysed thematically, using the constant comparative method. RESULTS: Some individuals said that sex was not an important part of their lives because of old age, illness, or the catheter. Others talked about how their catheter and their disability affected their sexual self-esteem, feelings of masculinity or femininity, and how the catheter caused pain, discomfort, or unexpected symptoms during sex. Many noted the lack of information on the subject and also said that health professionals were reluctant to talk about sex. For a minority a catheter was not a major problem in relation to sex. CONCLUSION: Some individuals using a urinary catheter would benefit from information on how to have a sexual relationship with a catheter in place and a chance to discuss the subject with their doctors. GPs need to be aware that sex may matter to a person with a catheter and how illness, disability, and a catheter may affect sexuality.

"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.

Living with an indwelling urinary catheter.

Despite 450,000 people in the U.K. using long-term catheters, there is very little information available about the experience. This study aimed to gain an understanding of patients' perspectives of living with an indwelling urinary catheter.

Changing a urethral or suprapubic catheter: the patient's perspective.

Understanding the patient's perspective in any area of health care is now recognised as being crucial to good practice, but little is known about patients' views on living with an indwelling urinary catheter. In this study, 36 people living with either a urethral or suprapubic catheter across the UK were interviewed. After thematic analysis, the authors interpreted what they learned. Many issues were raised, including the need to know who was responsible for changing the catheter, the importance of continuity of care, 24-hour access to services, and good hygiene. Patients valued nurses with training and experience, with plenty of time, who took care and who listened to what mattered to the patient. The patient's perspective is important at all levels, not only when designing and planning an integrated continence service, but also in delivering services in the community.

How people bereaved by suicide perceive newspaper reporting: qualitative study.

BACKGROUND: People bereaved by suicide are often reported to be distressed by media reporting. Current media guidelines for reporting suicide focus especially on prevention of copycat behaviour. AIMS: To explore bereaved individuals' experiences of media reporting after suicide and to examine their priorities in relation to media guidelines. METHOD: In-depth interviews with 40 people bereaved by suicide, with qualitative analysis. Review of four guidelines. RESULTS: There is a difference of emphasis between guidance for the press that aims to prevent copycat suicides (especially avoidance of details such as method used) and the perspectives of bereaved people (who prioritise sympathetic and accurate reporting, sometimes including details of the death and images of the person who died). We found that bereaved relatives were sometimes keen to talk to the press. Those who were upset by the press focused on careless reporting, misquoting and speculation that gave an inaccurate impression of the death. CONCLUSIONS: The Leveson Inquiry has drawn attention to the damage that can be caused by irresponsible journalism. Guidelines written to prevent 'copycat' suicides are important, but so are the needs of bereaved relatives. Because accuracy matters greatly to the bereaved, families should be able to work with an intermediary such as a police press officer to prepare a statement for the press to minimise the risk of misrepresentation.

A proper, fitting explanation? : suicide bereavement and perceptions of the coroner's verdict.

BACKGROUND: As in several other countries, inquiries after a suspected suicide in England and Wales now routinely seek to include both medico-legal and family perspectives on the character and motivations of the person who died. Little research attention, however, has been paid to the reactions of the bereaved to the coroner's verdict. AIMS: To explore people's accounts of their acceptance or resistance to the verdict and the resources they draw upon in explaining their perspectives, especially when these contraindicate the coroner's verdict. METHODS: Indepth interviews with 40 people who had been bereaved by suicide, followed by qualitative analysis, combining thematic analysis with constant comparison. RESULTS: Bereaved relatives who saw the suicide verdict as a correct reflection of events drew on the conventional constructions of suicide used by coroners, and (thus) the media. Relatives who resisted a suicide verdict referred to their privileged knowledge and beliefs about the person who had died, producing claims about their character, relationships, and motivations which often contradicted the conventional cues, such as a diagnosis of mental illness, previous attempts at suicide, method used, and suicide notes. For some relatives an open verdict was acceptable, even desirable, while for others it left too much uncertainty. CONCLUSIONS: The findings have implications for coroner's practice, understanding varied responses of people bereaved by suicide, and for future research.

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.

Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study.

OBJECTIVE: To explore reasons why people with pancreatic cancer, who are reaching the end of their lives, say they wish to die at home or elsewhere, and why preferences may change. DESIGN: Qualitative study using semistructured interviews followed by thematic analysis. SETTING: Respondents recruited from different parts of the UK during 2009/2010. PARTICIPANTS: 16 people with experience of pancreatic cancer (8 patients and 8 bereaved relatives) who discussed place of death in detail during an in-depth interview (from a total sample of 32 people with pancreatic cancer and eight relatives of others who had died of this disease). RESULTS: People's preferences were affected by their perceptions and previous experiences of care available at home, in a hospice or hospital. Preferences were also shaped by fears about possible loss of dignity, or fears of becoming a burden. Some people thought that a home death might leave bad memories for other members of the family. People with pancreatic cancer and their relatives were aware that preferences might change (or had changed) as death approached. CONCLUSIONS: The National Health Service End of Life Care Strategy for England seeks to meet the needs of people who are dying and promotes better support for home deaths. More information is needed about why patients hold different views about place of care and place of death, why patients' preferences change and what importance patients attach to place of death. Health professionals should bear this in mind if the subject is raised during advance care planning.

Disclosing a cancer diagnosis to friends and family: a gendered analysis of young men's and women's experiences.

Little is known about how young adults disclose their cancer diagnosis to family and friends, and whether there are similarities or differences between men and women. This article compares young adults' experiences of disclosing a cancer diagnosis, drawing on narrative interviews with 37 respondents aged 18 to 34 years. Most respondents were open about their diagnosis, and there were striking similarities in the difficulties that men and women described and in their desire to protect relatives. However, men made up most of the minority of respondents who were more secretive about their diagnosis. Men also made more explicit connections between their gendered identity and disclosure; worries about being perceived differently by peers resulted in some men hiding their diagnosis and others using humor to pre-empt sympathy. These findings are discussed in the context of gender stereotypes of "expressive" women and "stoical" men.

What affects the uptake of screening for bowel cancer using a faecal occult blood test (FOBt): a qualitative study.

Screening can reduce bowel cancer mortality. The UK National Health Service Bowel Cancer Screening Programme (NHS BCSP), using the Faecal Occult Blood test (FOBt), is being introduced over three years in the UK, but in some areas uptake is disappointing. We sought to understand why some people decided to participate in screening for bowel cancer while others did not. Interviews were conducted with 44 men and women invited for screening. Most had decided to take part, some were reluctant, and a few had declined to participate. We aimed for a maximum variation sample. Reasons for accepting screening included: knowing someone with cancer, previous positive experience of women's screening programmes, being a "good citizen", previous bowel problems, and encouragement from others. Reasons for reluctance to take part included: feeling healthy, fear of outcome, lack of time, disgust at the idea of handling stools, concern about posting samples in the mail, misunderstanding instructions, and past (negative) experience or fear of colonoscopy. Theoretical models of health behaviours do not mention the sense of civic responsibility that encourages people to avert (later) costs to the NHS. This may be a particular feature of a socialized health system. Our results also suggest that people might feel more inclined to accept screening if they had current information about patients' experiences of colonoscopy and treatment for early bowel cancer.

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 men's 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 men's 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." Men's accounts also suggest that poor communication about the uncertainty of the test--and about treatment for prostate cancer--also persists.

Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer.

PURPOSE: To explore fertility issues for young men who had been diagnosed and treated for cancer and to examine communication problems surrounding these fertility issues. METHOD: Narrative interviews were conducted with 21 young men previously treated for cancer in the United Kingdom. Eighteen talked about fertility issues at some length. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Communication about sperm storage was sometimes difficult and embarrassing. Young men wanted the opportunity to bank their sperm but decisions were often rushed. Some would have appreciated counseling and were unprepared for the process of sperm banking and criticized facilities. Uncertainty about fertility status caused worries for the future. CONCLUSIONS: More still needs to be done to help young men with cancer to address issues of fertility. All adolescents and young men treated for cancer should be offered sperm banking if their fertility may be affected. They should be offered counseling at every stage by professionals who feel comfortable talking about the subject. Interactive, educational CD-ROMs or websites may be useful. Physical facilities for sperm banking should be improved.