Decision-making about cervical screening in a heterogeneous sample of nonparticipants: A qualitative interview study.

OBJECTIVE: According to the precaution adoption process model, cervical screening nonparticipants represent a heterogeneous group including those who are unaware of, unengaged with, or undecided about screening, as well as intenders and decliners. We aimed to explore beliefs about cervical screening among these different types of nonparticipant. METHODS: Semistructured interviews were carried out with women aged 26 to 65 years living in Britain (n = 29). Women were purposively sampled to represent different nonparticipant types. Interviews were transcribed verbatim, and data were analysed thematically using framework analysis. RESULTS: The salience of some barriers to screening varied between different types of nonparticipant. Bad experiences were prominent in the discussions of women who had decided not to attend, while practical barriers were more prominent among intenders. There was also some overlap between nonparticipant types. For example, many of the undecided women described not wanting to go for screening, but with less certainty than decliners. Some intenders (particularly those who had not been screened before) described not really wanting to attend but feeling they ought to. Women's views on the invitation/reminder process also varied; intenders and maintainers appreciated written reminders and general practitioner (GP) prompts but decliners sometimes perceived these as "badgering." Throughout the interviews, women described changing views on screening in the wider context of ageing and motherhood. CONCLUSIONS: The salience of screening barriers varies by nonparticipant type, offering possibilities for tailored interventions. However, the fluidity of women's stage of screening adoption might have implications for this approach to intervention design.

It's hard to reach the "hard-to-reach": the challenges of recruiting people who do not access preventative healthcare services into interview studies.

In this article, we discuss the challenges faced in recruiting "hard-to-reach" groups for interview studies, specifically those who do not access preventative healthcare services. We do this by reflecting on the varying success of different recruitment methods we have used in two recent studies; one investigating ethnic disparities in human papillomavirus vaccination uptake and another exploring difference in cervical screening non-participation. Engaging new community groups to help with recruitment proved particularly difficult, as did recruiting online. Our most successful recruitment methods included recruiting through community groups with whom we had previously established relationships, recruiting through schools and re-contacting participants who previously completed a related survey. We conclude that successful recruitment is dependent on study awareness and engagement. We urge others to be transparent in reporting recruitment methods in order to benefit the qualitative research community and suggest that details are published as supplementary material alongside qualitative articles in future.

Barriers to cervical screening and interest in self-sampling among women who actively decline screening.

OBJECTIVES: Understanding why some women actively decline cervical screening could contribute to tailored intervention development. We explored reasons for non-participation in cervical screening among women who had made an active decision not to attend in the future. We also explored interest in human papillomavirus self-sampling. METHODS: In a population-based survey of women in Great Britain, home-based computer-assisted interviews were carried out with screening eligible women. Women reported their intention to attend for screening when next invited. They endorsed predefined barriers to screening and indicated their interest in human papillomavirus self-sampling. RESULTS: Women who had actively declined screening and those who intended to go but were currently overdue (n=543) were included in this analysis. Women who had made an active decision not to be screened in the future were more likely to endorse the barriers 'I have other more important things to worry about' and to perceive screening to be of low relevance based on their sexual behaviour. Most participants (70%) indicated that they would be interested in human papillomavirus self-sampling. Interest in self-sampling was greater among those who reported having had a bad experience of screening in the past, were too busy or embarrassed to attend, or would not want a man to carry out the test. CONCLUSIONS: Women who had made an active decision not to attend screening felt it was of low relevance to them and that they had more important things to worry about. Shifting the perceived cost-benefit ratio for these women by offering human papillomavirus self-sampling might increase screening participation in this group.

Assessing the acceptability of incentivising HPV vaccination consent form return as a means of increasing uptake.

BACKGROUND: Uptake of human papillomavirus (HPV) vaccination is high overall but there are disparities in uptake, particularly by ethnicity. Incentivising vaccination consent form return is a promising approach to increase vaccination uptake. As part of a randomised feasibility trial we qualitatively assessed the acceptability of increasing uptake of HPV vaccination by incentivising consent form return. METHODS: In the context of a two-arm, cluster randomised feasibility trial, qualitative free-text questionnaire responses were collected from adolescent girls (n = 181) and their parents (n = 61), assessing the acceptability of an incentive intervention to increase HPV vaccination consent form return. In the incentive intervention arm, girls who returned a signed consent form (regardless of whether consent was given or refused), had a 1-in-10 chance of winning a £50 shopping voucher. Telephone interviews were also conducted with members of staff from participating schools (n = 6), assessing the acceptability of the incentive. Data were analysed thematically. RESULTS: Girls and parents provided a mix of positive, negative and ambivalent responses about the use of the incentive to encourage HPV vaccination consent form return. Both girls and parents held misconceptions about the nature of the incentive, wrongly believing that the incentive was dependent on vaccination receipt rather than consent form return. School staff members also expressed a mix of opinions on the acceptability of the incentive, including perceptions of effectiveness and ethics. CONCLUSIONS: The use of an incentive intervention to encourage the return of HPV vaccination consent forms was found to be moderately acceptable to those receiving and delivering the intervention, although a number of changes are required to improve this. In particular, improving communication about the nature of the incentive to reduce misconceptions is vital. These findings suggest that incentivising consent form return may be an acceptable means of improving HPV vaccination rates, should improvements be made. TRIAL REGISTRATION: ISRCTN Registry; ISRCTN72136061 , 26 September 2016, retrospectively registered.

Variation in health beliefs across different types of cervical screening non-participants.

Understanding factors associated with different types of cancer screening non-participation will help with the development of more targeted approaches for improving informed uptake. This study explored patterns of general health beliefs and behaviour, and cancer-specific beliefs across different types of cervical screening non-participants using the Precaution Adoption Process Model (PAPM). A population-representative sample of women in Britain completed a home-based survey in 2016. Women classified as non-participants (n = 839) completed additional questions about health beliefs. Some general health beliefs and behaviours, as well as cancer-specific beliefs, were associated with particular types of non-participation. For example, those who scored higher on fatalism were more likely to be unaware of screening (OR = 1.74, 95%CI: 1.45-2.08) or unengaged with screening (OR = 1.57, CI: 1.11-2.21). Women with greater deliberative risk perceptions were less likely to be unengaged with screening (OR = 0.74 CI: 02.55-0.99) and less likely to have decided against screening (OR = 0.71, CI: 0.59-0.86). Women who had seen a general practitioner in the last 12 months were less likely to be unaware (OR = 0.49, CI: 0.35-0.69), and those reporting cancer information avoidance were more likely to be unengaged with screening (OR = 2.25, CI: 1.15-4.39). Not wanting to know whether one has cancer was the only factor associated with all types of non-participation. Interventions to raise awareness of screening should include messages that address fatalistic and negative beliefs about cancer. Interventions for women who have decided not to be screened could usefully include messages to ensure the risk of cervical cancer and the relevance and benefits of screening are well communicated.

Public understanding of the purpose of cancer screening: A population-based survey.

Objectives In examining informed choice in cancer screening, we investigated public awareness that some screening programmes aim to prevent cancer, while others seek to detect cancer at an early stage. Methods A population-based survey of adults aged 50-70 in England (n = 1433), including data on demographic characteristics and screening experience. Participants were asked to select the main purpose of cervical, breast, and colorectal cancer screening (both faecal occult blood testing and flexible sigmoidoscopy). Results Across all four screening programmes, most people thought the main aim was to catch cancer early (71-78%). Only 18 and 14% knew that cervical screening and flexible sigmoidoscopy, respectively, are primarily preventive. Knowledge of the preventive aspect of these two programmes was low across the board, with few demographic patterns. By contrast, 78 and 73% of the sample were aware that breast screening and the faecal occult blood test, respectively, predominantly aim to detect cancer early. For these programmes, accurate knowledge was socially graded, lower in ethnic minority groups, and positively associated with previous participation in the programmes. Conclusions Our findings suggest that although awareness of the purpose of early detection screening is high, awareness that screening can prevent cancer is low across all demographic groups. Understanding the purpose of screening is a key aspect of informed choice but despite current communication strategies highlighting these differences, people do not seem to have a nuanced understanding of these differing aims. Our findings may be indicative of a broader public scepticism about the preventability of cancer.

Understanding the heterogeneity of cervical cancer screening non-participants: Data from a national sample of British women.

BACKGROUND: Uptake of cervical cancer screening in the United Kingdom (UK) is falling year on year, and a more sophisticated understanding of non-participation may help design interventions to reverse this trend. This study ascertained the prevalence of different non-participant types using the Precaution Adoption Process Model (PAPM). METHODS: Home-based computer-assisted interviews were carried out with 3113 screening-eligible women in Britain. Survey items assessed self-reported screening uptake and intention to attend in future. Responses to these items were used to classify women into one of five different types of non-participants. RESULTS: Of 793 non-participants, 28% were unaware of screening, 15% had decided not to attend and 51% were intending to have screening but were currently overdue. Younger women were more likely to be unaware of screening or to intend to be screened, while older women were more likely to have decided not to be screened. Women from ethnic minority backgrounds were more likely to be unaware of screening than white women. Being in a lower social grade was associated with increased odds of all three types of non-participation. CONCLUSION: The majority of cervical cancer screening non-participants are not making an active decision not to attend but rather are either unaware or unable to act. There are clear sociodemographic differences between non-participant types, which could be used to identify where tailored interventions may be best targeted.

Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis.

OBJECTIVE: As uptake of cervical screening continues to decline, this systematic review synthesises the qualitative literature on women's perceptions and experiences of cervical screening in the context of an organised call-recall programme, in order to understand the barriers to informed uptake. METHODS: We searched nine databases for English language peer-reviewed publications reporting on qualitative data from screening-eligible women, exploring barriers to cervical screening in countries that offer a nationally organised call-recall programme. Evidence was integrated using thematic synthesis. RESULTS: Thirty-nine papers from the UK, Australia, Sweden and Korea were included. The majority of participants had attended screening at least once. Two broad themes were identified: (a) should I go for screening? and (b) screening is a big deal. In considering whether to attend, women discussed the personal relevance and value of screening. Women who had previously attended described how it was a big deal, physically and emotionally, and the varied threats that screening presents. Practical barriers affected whether women translated screening intentions into action. CONCLUSIONS: The variation in women's understanding and perceptions of cervical screening suggests that interventions tailored to decisional stage may be of value in increasing engagement with the invitation and uptake of screening in those who wish to take part. There is also a need for further research with women who have never attended screening, especially those who remain unaware or unengaged, as their perspectives are lacking in the existing literature. © 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.

Ethnicity-specific factors influencing childhood immunisation decisions among Black and Asian Minority Ethnic groups in the UK: a systematic review of qualitative research.

BACKGROUND: Uptake of some childhood immunisations in the UK is lower among those from some Black and Asian Minority Ethnic (BAME) backgrounds. This systematic review of qualitative research sought to understand the factors that are associated with ethnicity that influence the immunisation decisions of parents from BAME backgrounds living in the UK. METHODS: Databases were searched on 2 December 2014 for studies published at any time using the terms 'UK' and 'vaccination' and 'qualitative methods' (and variations of these). Included articles comprised participants who were parents from BAME backgrounds. Thematic synthesis methods were used to develop descriptive and higher order themes. Themes specific to ethnicity and associated factors are reported. RESULTS: Eight papers were included in the review. Most participants were from Black (n=62) or Asian (n=38) backgrounds. Two ethnicity-related factors affected immunisation decisions. First, factors that are related to ethnicity itself (namely religion, upbringing and migration, and language) affected parents' perceived importance of immunisations, whether immunisations were permitted or culturally acceptable and their understanding of immunisation/the immunisation schedule. Second, perceived biological differences affected decision-making and demand for information. CONCLUSIONS: Factors related to ethnicity must be considered when seeking to understand immunisation decisions among parents from BAME backgrounds. Where appropriate and feasible, vaccination information should be targeted to address beliefs about ethnic differences held by some individuals from some BAME backgrounds.

A qualitative systematic review of factors influencing parents' vaccination decision-making in the United Kingdom.

BACKGROUND: High uptake of vaccinations is crucial for disease prevention. Although overall uptake of childhood immunisations is high in the United Kingdom (UK), pockets of lower uptake remain. Novel systematic methods have not been employed when reviewing the qualitative literature examining parents' vaccination decisions. AIMS: We aimed to conduct a qualitative systematic review of studies in the UK to understand factors influencing parental decisions to vaccinate a child. METHODS: On 12/2/14 we searched PsycINFO, MEDLINE, CINAHL plus, Embase, Social Policy and Practice and Web of Science for studies using qualitative methods and reporting reasons why parents in the UK had or had not immunised their child. Participant quotes and authors' interpretations of qualitative data were extracted from the results of articles. Thematic synthesis was used to develop higher-order themes (conducted in 2015). RESULTS: 34 papers were included. Two types of decision-making had been adopted: non-deliberative and deliberative. With non-deliberative decisions parents felt they had no choice, were happy to comply and/or relied on social norms. Deliberative decisions involved weighing up the risks and benefits, considering others' advice/experiences and social judgement. Emotions affected deliberative decision-making. Trust in information and vaccine stakeholders was integral to all decision-making. Practical issues affected those who intended to vaccinate. CONCLUSIONS: Parents adopted two different approaches to decision-making about childhood vaccinations. By understanding more about the mechanisms underpinning parents' vaccination behaviour, in collaboration with vaccine stakeholders, we can better design interventions to enhance informed uptake.