Public perceptions of communicating information about bowel cancer screening

Objectives  The National Health Service has recently begun the introduction of a Bowel Cancer Screening Programme (BCSP), offering biennial screening to men and women aged 60–69 years. This study aimed to explore public perceptions regarding the communication of information designed to facilitate informed choice in relation to this new screening programme. Methods  Fourteen single sex focus groups were conducted in England with 86 individuals aged 60–69 years. Focus groups were conducted either with individuals who had participated in the pilot phase of the BCSP, or with members of the public living outside the pilot areas. Results  The majority of participants expressed positive attitudes towards bowel cancer screening, identifying items highlighting the benefits of the programme as important for others to know. Whilst some believed it was appropriate for information regarding the potentially negative aspects of the programme to be communicated at the outset, others expressed concerns about the generation of anxiety and potential for decreased participation. A number of participants questioned the concept of informed choice, arguing that once in place, a screening programme should be vigorously promoted. Conclusions  There is some variation in the type of information favoured by those eligible for bowel cancer screening. This may present challenges for the provision of information aiming to facilitate informed choice in the BCSP. Flexible approaches to information provision that recognize the perceptions of patients may be required.     

Informed choice in bowel cancer screening: a qualitative study to explore how adults with lower education use decision aids

Background Offering informed choice in screening is increasingly advocated, but little is known about how evidence‐based information about the benefits and harms of screening influences understanding and participation in screening. Objective We aimed to explore how a bowel cancer screening decision aid influenced decision making and screening behaviour among adults with lower education and literacy. Methods Twenty‐one men and women aged 55–64 years with lower education levels were interviewed about using a decision aid to make their screening decision. Participants were purposively selected to include those who had and had not made an informed choice. Results Understanding the purpose of the decision aid was an important factor in whether participants made an informed choice about screening. Participants varied in how they understood and integrated quantitative risk information about the benefits and harms of screening into their decision making; some read it carefully and used it to justify their screening decision, whereas others dismissed it because they were sceptical of it or lacked confidence in their own numeracy ability. Participants’ prior knowledge and beliefs about screening influenced how they made sense of the information. Discussion and conclusions Participants valued information that offered them a choice in a non‐directive way, but were concerned that it would deter people from screening. Healthcare providers need to be aware that people respond to screening information in diverse ways involving a range of literacy skills and cognitive processes.     

Trust,medical expertise and humaneness: A qualitative study on people with cancer’ satisfaction with medical care

BackgroundUnderstanding peoples’ evaluations of their health care is important to ensure appropriate health‐care services.ObjectivesTo understand what factors influence peoples’ satisfaction with care and how interpersonal trust is established between doctors and cancer patients in Germany.DesignA narrative interview study that included women with a diagnosis of breast cancer and men with a diagnosis of prostate cancer. A question‐focused analysis was conducted.Setting and participantsInterviewees were sought across Germany through self‐help organizations, clinics, rehabilitation facilities, physicians and other health‐care professionals, in order to develop modules on experiencing cancer for the website krankheitserfahrungen.de (illness experiences.de).ResultsSatisfaction was related to the perception of having a knowledgeable and trusted physician. Trust was developed through particular interactions in which ‘medical expertise’ and ‘humaneness’ were enacted by physicians. Humaneness represents the ability of physicians to personalize medical expertise and thereby to convey working in the individual''s best interest and to treat the patient as an individual and unique human being. This was fostered through contextual and relational factors including among others setting, time, information transfer, respect, availability, profoundness, sensitivity and understanding.ConclusionIt was the ability to make oneself known to and know the patient in particular ways that allowed for satisfying care experiences by establishing interpersonal trust. This suggests the importance of conceptualizing the doctor‐patient relationship as a fundamentally reciprocal human interaction of caregiving and care‐receiving. At the core of the satisfying care experiences lies a doctor‐patient relationship with a profoundly humane quality.     

Gender differences in colorectal cancer screening barriers and information needs.

CONTEXT: Several prior studies have found that women are less likely to be screened for colorectal cancer (CRC) than men. While the source of this screening differential is unknown, recent studies suggest gender differences in barriers to screening might explain the disparity. OBJECTIVE: This formative study was designed to explore CRC screening barriers, attitudes and preferences by gender. METHODOLOGY: Focus group interviews with groups stratified by gender and screening status. Participants included 27 females and 43 males between the ages of 50 and 75 years who receive primary care at the Minneapolis VA Medical Center. We conducted interpretive and grounded text analysis of semi-structured focus group interviews to assess how knowledge, experiences and sociocultural norms shape female and male preferences and barriers to current CRC screening guidelines. RESULTS: Female and male participants reported similar preferences for CRC screening mode, but there were notable differences in the barriers and facilitators to screening. Key findings suggest that women viewed the preparation for endoscopic procedures as a major barrier to screening while men did not; women and men expressed different fears and information preferences regarding endoscopic procedures; and women perceive CRC as a male disease thus feeling less vulnerable to CRC. Gender-specific barriers may explain women's lower rate of screening for CRC. CONCLUSION: Colorectal cancer screening promotion interventions, decision aids and clinical practice may benefit by being tailored by gender.     

How do people interpret information about colorectal cancer screening: observations from a think‐aloud study

Background

The English NHS Bowel Cancer Screening Programme biennially invites individuals aged 60–74 to participate in screening. The booklet, ‘Bowel Cancer Screening: The Facts'' accompanies this invitation. Its primary aim is to inform potential participants about the aims, advantages and disadvantages of colorectal cancer screening.

Objective

To provide detailed commentary on how individuals process the information contained within ‘The Facts’ booklet.

Design, setting and participants

This study comprised of 18 interviews with individuals aged 45–60 and used a ‘think‐aloud’ paradigm in which participants read aloud the booklet. Participant utterances (verbal statements made in response to researcher‐led prompts) were transcribed and analysed using a combination of content and thematic analysis.

Results

A total of 776 coded utterances were analysed (mean = 43.1 per person; range = 8–95). While overall comprehension was satisfactory, several problem areas were identified such as the use of complex unfamiliar terminology and the presentation of numerical information. Specific sections such as colonoscopy risk information evoked negative emotional responses. Participants made several suggestions for ways in which comprehension might be improved.

Conclusion

Public perceptions of the NHS Bowel Cancer Screening Programme information materials indicated that specific aspects of the booklet were difficult to process. These materials may be an appropriate target to improve public understanding of the aims, benefits and disadvantages of colorectal cancer screening. These findings will contribute to a broader NIHR‐funded project that aims to design a supplementary ‘gist‐based’ information leaflet suitable for low literacy populations.     

Men's experiences of physical exams and cancer screening tests: a qualitative study

BACKGROUND: American men have lower overall rates of cancer screening than women. This study was designed to elicit men's health care experiences and knowledge of testicular, prostate, and colorectal cancer (CRC) screening. METHODS: Fifty-three men participated in eight physician-led semistructured focus groups in Rhode Island and New Hampshire. Four groups (ages 18-35; N = 20) discussed testicular cancer screening. Four groups of older men (ages 40-79; N = 33) discussed prostate and colorectal cancer screening. RESULTS: Men in this study prefer physicians who establish interpersonal relationships with male patients. Lack of explanations during physical exams resulted in negative experiences. Men were eager to learn more about their health, but commonly complained that they received neither appropriate cancer screening nor sufficient explanations from their physicians. When PSA screening was offered, discussion was often inadequate. Although men expressed interest in participating in the PSA decision, sole responsibility for this complex decision was seen as undesirable. These men desired more discussion and better sources of health information during medical encounters. CONCLUSIONS: Clinician attention to communication, relationship building, patient education, and consideration for patient privacy and modesty are important for the care of male patients especially with sensitive exams and topics important to men's cancer screening.     

Decision-making role preferences and information needs: a comparison of colorectal and breast cancer

Objective  An exploratory study has been carried out to examine decision-making role preferences and information needs for a sample of people with colorectal cancer ( n =48). The work replicated a larger study carried out for women with breast cancer ( n =150), and this paper compares and contrasts findings for both disease groups.
Design  A cross-sectional design was employed, involving structured interviews. The main variables investigated were decision-making preference (using a decisional role preference card sort), perceived decisional role and information need (using an information needs questionnaire).
Results  The majority (78%) of the colorectal cancer patients preferred to play a passive role in decision making, in contrast to 52% of women with breast cancer in previous work. Eighty per cent of the colorectal sample and 61% of the women with breast cancer perceived that the doctor had made treatment decisions. Priority information needs for both groups related to cure, spread of disease and treatment options.
Conclusions  The two most striking findings from the comparison between the two disease groups relate to the differences in decision-making role preferences and the similarities in information needs. The process of involving people with colorectal cancer in treatment decision making warrants further investigation. The similarity in information needs of the two disease groups has implications for health care professionals providing information to people with cancer.     

Attitudes towards the integration of smoking cessation into lung cancer screening in the United Kingdom: A qualitative study of individuals eligible to attend

IntroductionThere is limited research exploring how smoking cessation treatment should be implemented into lung cancer screening in the United Kingdom. This study aimed to understand attitudes and preferences regarding the integration of smoking cessation support within lung cancer screening from the perspective of those eligible.MethodsThirty‐one lung cancer screening eligible individuals aged 55–80 years with current or former smoking histories were recruited using community outreach and social media. Two focus groups (three participants each) and 25 individual telephone interviews were conducted. Data were analysed using the framework approach to thematic analysis.ResultsThree themes were generated: (1) bringing lung cancer closer to home, where screening was viewed as providing an opportunity to motivate smoking cessation, depending on perceived personal risk and screening result; (2) a sensitive approach to cessation with the uptake of cessation support considered to be largely dependent on screening practitioners'' communication style and expectations of stigma and (3) creating an equitable service that focuses on ease of access as a key determinant of uptake, where integrating cessation within the screening appointment may sustain increased quit motivation and prevent loss to follow‐up.ConclusionsThe integration of smoking cessation into lung cancer screening was viewed positively by those eligible to attend. Screening appointments providing personalized lung health information may increase cessation motivation. Services should proactively support participants with possible fatalistic views regarding risk and decreased cessation motivation upon receiving a good screening result. To increase engagement in cessation, services need to be person‐centred.Patient or Public ContributionThis study has included patient and public involvement throughout, including input regarding study design, research materials, recruitment strategies and research summaries.     

Exploring the decision-making preferences of people with colorectal cancer

OBJECTIVES: To explore patient views on participation in treatment, physical care and psychological care decisions and factors that facilitate and hinder patients from making decisions. DESIGN: Qualitative study using semi-structured interviews with patients. SETTING AND PARTICIPANTS: Three NHS Trusts in the north-west of England. Theoretical sampling including 41 patients who had been treated for colorectal cancer. RESULTS: For patients, participation in the decision-making process was about being informed and feeling involved in the consultation process, whether patients actually made decisions or not. The perceived availability of treatment choices (surgery, radiotherapy, chemotherapy) was related to type of treatment. Factors that impacted on whether patients wanted to make decisions included a lack of information, a lack of medical knowledge and trust in medical expertise. Patients perceived that they could have a more participatory role in decisions related to physical and psychological care. CONCLUSION: This study has implications for health professionals aiming to implement policy guidelines that promote patient participation and shared partnerships. Patients in this study wanted to be well informed and involved in the consultation process but did not necessarily want to use the information they received to make decisions. The presentation of choices and preferences for participation may be context specific and it cannot be assumed that patients who do not want to make decisions about one aspect of their care and treatment do not want to make decisions about other aspects of their care and treatment.     

Patient perspectives on information and choice in cancer screening: a qualitative study in the UK

The principle of informed choice has been recently incorporated into cancer screening policy. However, there is limited empirical or theoretical work on informed choice in this particular context. The main aim of the study reported here was to explore the information needs of people invited for screening, and to gain insights into the relationship between the information they wanted and the choices they made. A qualitative study (nine focus groups and 15 individual interviews) was undertaken with people who had contrasting experiences (and outcomes) of either breast, cervical, or colorectal cancer screening at two locations in Scotland, UK. Findings suggest that lay people define and conceptualise informed choice differently from policy makers. The study also found that information about the disease was as important to people as information on the risks and limitations of screening. However, information may have little part to play in the choices people make. Rather, it may have more impact on outcomes such as satisfaction and anxiety. An explicit policy aim in promoting informed choice is to enhance patient autonomy and to prevent people from being deceived or coerced. However, this research shows that the provision of evidence-based information alone does not necessarily mean that an informed choice is made. People may not read, want, or understand the information, and, additionally, they may not be able to carry out their intended choice. There may be personal barriers, such as physical or mental health problems and language, or organisational barriers, such as the availability of the service/intervention and access. Therefore, the term 'informed choice' might not be useful in this context.     

Acceptability of narratives to promote colorectal cancer screening in an online community

Objective

To assess the acceptability of narratives to promote colorectal cancer (CRC) screening among members of an online weight loss community.

Method

Members of online weight loss community completed an Internet survey in 2010. Multiple logistic regression models examined demographic and attitudinal correlates of interest in sharing and receiving CRC screening narratives.

Results

Participants (n = 2386) were 92% female with mean (SD) age 58 (6) years; 68% were up-to-date with CRC screening. Among those who were up-to-date, 39% were interested in sharing their narratives with other members. African-Americans were more likely than other racial groups to be interested in sharing narratives (adjusted OR 2.02, 95% CI 1.14-3.57). Older, married members and those with greater CRC screening worries were less likely to be interested in sharing narratives. Among those not up-to-date, 63% were interested in receiving narratives from online community members, and those with higher perceived salience of CRC screening were more likely to be interested in receiving narratives (adjusted OR 1.86, 95% CI 1.31-2.65).

Conclusions

Members of this online weight loss community expressed interest in sharing and receiving narratives for CRC screening promotion. Attitudes and demographic characteristics may predict successful recruitment of those who would share and receive narratives.     

The SWIM study: Ethnic minority women's ideas and preferences for a tailored intervention to promote national cancer screening programmes—A qualitative interview study

BackgroundEthnic minority women from non‐Western countries are less likely than the native women to participate in screening programmes for cervical cancer, breast cancer and colorectal cancer. This social inequality can result in loss of possibility for prevention, delayed diagnosis and treatment and, ultimately, lower chance of survival. Developing a tailored intervention might be the solution to reduce social inequalities in cancer screening, and a key feature in intervention research is to consult the target group.ObjectiveTo explore ethnic minority women''s own ideas and preferences for a cancer screening intervention and identify their attitudes to different strategies.MethodsAn interview study with five focus group interviews, two group interviews with an interpreter and three individual interviews. Thirty‐seven women from 10 non‐Western countries contributed to the study. The interviews were audio‐recorded and transcribed verbatim followed by a thematic analysis.ResultsAccording to the women, a tailored intervention should focus on knowledge in the form of face‐to‐face teaching. The women further suggested information material in their own language with a simple, positive and concrete communication strategy. They would like to be involved in an awareness strategy and share the knowledge with their network.ConclusionEthnic minority women were interested in a tailored intervention, and they were keen to contribute with ideas and preferences. The findings emphasized the potential of a tailored intervention with specific suggestions to the content when attempting to reduce inequality in cancer screening participation.Patient or Public ContributionMinority women were involved in the interview study.     

The influence of information and private versus public provision on preferences for screening for prostate cancer: a willingness-to-pay study

This study investigates the influence of information and public versus private provision on preferences for introducing screening (i.e. PSA-test) for prostate cancer in Denmark. The aim is to disclose if preferences (measured as willingness-to-pay) are influenced by whether the service is provided by the private or public health care sector, and the extent to which negative information on the PSA-test influences the perceptions of the screening programme. It is also investigated whether the impact of information differs dependent on public-private provision. A random sample of the Danish male population (all between 50 and 70 years of age) were invited to fill out a web-based questionnaire. It was found that two thirds of the respondents were willing to participate and willing to pay for a public intervention programme, when provided with all relevant information. In contrast, only approximately one third were so inclined if a prostate cancer screening service was offered by private clinics. Results suggest that public provision framing increases the perceived value of the screening programme, and that the provision of full information regarding the negative characteristics of the programme decreases programme valuation.