Amanda J. Chorley

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

As uptake of cervical screening continues to decline, this systematic review synthesises the qualitative literature on womens perceptions and experiences of cervical screening in the context of an organised call–recall programme, in order to understand the barriers to informed uptake.

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.

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.

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.

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.

It’s hard to reach the “hard-to-reach”: the challenges of recruiting people who do not access preventative healthcare services into interview studies

ABSTRACT 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.

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

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.

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

BackgroundUptake 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.MethodsIn 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.ResultsGirls 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.ConclusionsThe 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 registrationISRCTN Registry; ISRCTN72136061, 26 September 2016, retrospectively registered.