Health Expectations

Advancing understanding of influences on cervical screening (non)‐participation among younger and older women: A qualitative study using the theoretical domains framework and the COM‐B model

AbstractBackgroundEffective screening can prevent cervical cancer, but many women choose not to attend their screening tests.ObjectiveThis study aimed to investigate behavioural influences on cervical screening participation using the Theoretical Domains Framework (TDF) and COM‐B models of behaviour change.DesignA qualitative study and semistructured phone interviews were conducted with women invited for routine screening tests within the national cervical screening programme in Ireland.Setting and ParticipantsForty‐eight women aged 25–65 years were recruited from the national screening register.ResultsSeven core themes were identified that mapped to three COM‐B components and 11 TDF domains: (1) knowledge of cervical cancer and screening, (2) coping with smear tests, (3) competing motivational processes—automatic and reflective, (4) cognitive resources, (5) role of social support, (6) environmental influences and (7) perceputal and practical influences. A range of knowledge about screening, perceived risk of cervical cancer and human papillomavirus infection was evident. Factors that influenced screening behaviours may be hierarchical—some were assigned greater importance than others. Positive screening behaviours were linked to autonomous motivation. Deficits in physical and psychological capability (inadequate coping skills) were barriers to screening, while physical and social opportunity (e.g. healthcare professional ‘champions’) could facilitate participation. Older women raised age‐related issues (e.g. screening no longer necessary) and had more negative attitudes to screening, while younger women identified practical barriers.ConclusionsThis study provides insight into screening participation and will aid development of theoretically informed interventions to increase uptake.Patient or Public ContributionWomen invited for screening tests through the national screening programme were interviewed. A Public & Patient Involvement (PPI) Panel, established to provide input into all CERVIVA research projects, advised the research team on recruitment materials and were given the opportunity to review and comment on the interview topic guide. This panel is made up of six women with various cervical screening histories and experiences.

Patient Voices: What Can We Learn From the Covid‐19 Pandemic About Follow‐Up Care in Gynaecologic Oncology?

ABSTRACT Purpose To explore women's experiences with follow‐up care after gynaecological cancer during the Covid‐19 pandemic and identify key elements of aftercare from their perspective. Methods A qualitative study was performed, including five focus group discussions and two individual interviews with 20 participants diagnosed with ovarian ( n  = 5), cervical ( n  = 6), endometrial ( n  = 5) or vulvar cancer ( n  = 4) who received follow‐up care during the Covid‐19 pandemic in the Netherlands. Transcripts underwent thematic analysis, guided by the framework of the Picker Principles of Patient‐Centred Care. Results Five themes were generated: (1) continuity of care, (2) absence of family members and carers, (3) meeting my needs, (4) managing my needs and (5) the cancer survivor narrative. The main changes experienced during the Covid‐19 pandemic were the introduction to remote healthcare and the absence of family members. An interconnection between themes was found, highlighting that providing a designated, always accessible contact person can be a catalyst for the improvement of information provision and healthcare guidance. Conclusions In conclusion, this study highlights the need for personalised and patient‐centred follow‐up that promotes patient empowerment, and how this can be provided by a designated contact person. Findings emphasise the importance of tailored support, involvement of family members, addressing information gaps, and overcoming barriers to self‐management. Lastly, the findings provide direction on how to approach follow‐up care in the future. Patient Contribution This study was done in close collaboration with the patient advocacy group Olijf; their significant input in both the design and conduct of the study is invaluable. Olijf's involvement ensured that the research remained patient‐centred and aligned with the real‐life concerns and priorities of those affected by gynaecological cancers. The participants in this study, all of whom are gynaecological cancer survivors, played an important role by sharing their experiences, and we extend our gratitude to them. Their insights were critical in shaping the findings of this research.

Acceptability of Self‐Sampling for Cervical Screening in Ethnically Diverse Groups in Northwest England: A Focus Group Study

ABSTRACT Introduction Research indicates disproportionately low cervical screening uptake by diverse ethnic groups in England. If acceptable, self‐sampling might address population‐specific barriers and improve screening uptake. The Alternative CErvical Screening (ACES) Diversity study aimed to explore the prospective acceptability of self‐sampling (urine sampling and self‐swabbing), as an alternative to current cervical screening, among women from diverse ethnic groups. Methods A qualitative study design was employed using focus groups. Forty‐eight women from diverse ethnic groups were recruited via community partners in Northwest England and a cross‐sectional survey. Eight focus groups were conducted (one online and seven in‐person; four with interpreters for Mandarin, Cantonese, Polish and Urdu). Data were transcribed, translated and analysed in English using thematic framework analysis guided by the Theoretical Framework of Acceptability. Results Three themes were identified. ‘Cultural considerations’ explored how aspects of culture and faith influenced perceptions of self‐sampling. ‘Desire for comfort and control’ reflected views of how self‐sampling increases autonomy by maintaining privacy, potentially reducing both pain and tension associated with screening. ‘Confidence in testing’ illustrates beliefs about self‐sampling, around ease of use, practical challenges and accuracy concerns. Conclusions Self‐sampling for cervical screening was considered highly acceptable. If introduced, self‐sampling could increase cervical screening uptake amongst women from diverse ethnic groups. Having a choice in how to interact with the screening programme and continuing to raise awareness of cervical screening were considered important. Future research should explore the concurrent or retrospective acceptability of urine self‐sampling for cervical screening. Patient or Public Contribution Multiple public involvement discussion sessions in Northwest England‐based community centres were arranged with women to explore and build understanding about cervical screening and speak about the ACES Diversity study. A further session was held, with an interpreter, to discuss the focus group topic guide and study design with women and create an opportunity for any feedback. Written feedback was provided for the recruitment poster from seven women (two East Asian, two Central and Eastern European, two African‐Caribbean and one South Asian).

Exploring Emotional and Cognitive Perceptions of Cervical Cancer Screening and Self‐Sampling Among Vulnerable Romanian Women: A Qualitative Study

ABSTRACT Introduction This study aimed to explore the emotional and cognitive perceptions of cervical cancer screening (CCS), with a focus on self‐sampling for human papillomavirus (HPV) by vulnerable Romanian women. Methodology Eighteen semi‐structured individual interviews were conducted with vulnerable women, defined by their low socioeconomic status (SES), residence in rural areas and membership in ethnic minorities. Participants were recruited using snowball sampling. Interviews followed a guide designed to assess constructs from the Health Belief Model (knowledge, barriers, evaluation of vulnerability) as they relate to women's views of prevention, the healthcare system and CCS. A Think Aloud protocol was used with a subsample of six women to identify potential barriers, opportunities and attitudes related to the use of self‐sampling kits. A reflexive thematic analysis was conducted to identify the primary themes related to with women's perceptions of CCS and self‐sampling. Results Four major themes emerged: (a) risk, fear and other emotional experiences; (b) women's perception of barriers; (c) knowledge, personal control and cues to action; and (d) women's perception of self‐sampling. Participants unravelled emotional and logistical barriers to CCS and self‐sampling. Limited health literacy, fear and shame influenced risk perceptions, hindering CCS participation. Logistical challenges and financial constraints further impeded access, while women often prioritized the needs of their families over their own health. The Think Aloud protocol revealed that initial concerns regarding self‐sampling could be alleviated by having clear instructions, highlighting the importance of support during the decision‐making process. Conclusion This study identified diverse barriers preventing vulnerable Romanian women from engaging in CCS, including logistical challenges, financial constraints and emotional factors. Patient or Public Contribution Patients or the public were not involved in the design, conduct, analysis or interpretation of the study.

‘ Why Didn't I Get That Choice?’ : A Qualitative Exploration of How Cervical Screening Choices Are Understood and Experienced by Screen‐Eligible People in Australia, Two Years After Self‐Collection Became an Option for All

ABSTRACT Background Australia's human papillomavirus (HPV)‐based National Cervical Screening Program guidelines state that anyone eligible for screening should be offered a choice of using self‐collection or clinician collection for initial screening. Aim To explore the awareness and experiences of women and people with a cervix who have been screened since this choice became available in July 2022. Methods Semi‐structured online or telephone interviews were conducted between February and May 2024 with 43 Victorian women and people with a cervix, aged 25–74 years. All participants self‐reported completing a cervical screen within 12 months of our study. Interview data were recorded, transcribed verbatim and thematically analysed before being mapped to The Ottawa Decision Support Framework. Self‐reported screening history was confirmed with de‐identified data from the National Cancer Screening Register (NCSR) Victorian Raw Data Extract (November 2024). Results Fewer than half (19, 44%) of those interviewed were given a choice at their most recent screen, with variation in how options were presented by healthcare providers. Participants felt they lacked awareness and knowledge to feel confident in their options. Most participants viewed having a choice as important and, even if they did not prefer self‐collection for themselves, noted benefits for others. Some felt disappointed or angry about not having a choice, while others were happy to defer to their doctor. Relationships with, and the views of, healthcare providers strongly influenced decision‐making. Participants reflected on potential advantages of self‐collection if it could reduce the cost of appointments and be accessed in more flexible ways. Among the 38 participants who consented to screening history verification, the self‐reported data showed reasonable accuracy (67%) against the NCSR. Conclusion Despite a clear policy directive for practitioners to offer a choice to all eligible individuals, many recent screeners were not offered the choice or lacked the knowledge, confidence and decision supports needed to make an informed choice. The choice of screening method appears strongly influenced by if, and how, options are presented by healthcare providers. A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice. Patient or Public Contribution Members of the public were involved in interviews. Findings were summarised and disseminated via a short report. A consumer advisory panel provided feedback on the content, readability and length of all patient‐facing resources.

Exploring Different Sampling Strategies: A Description of Our Success in Reaching Hard‐to‐Reach Turkish and Moroccan Immigrant Women in The Netherlands

ABSTRACTIntroductionIn the Netherlands, since 1996, there is a national cervical cancer (CC) screening programme in place for women aged 30–60 years. The participation of Turkish‐ and Moroccan‐Dutch women is very low. To facilitate their informed decision‐making, we developed a culturally sensitive educational video, and evaluated it through a questionnaire study. Since we used multiple strategies for the recruitment of respondents, we aimed (1) to explore which sampling strategy resulted in which type of respondents, (2) to investigate which sampling strategy and individual characteristics were associated with successful recruitment of other respondents, and (3) to examine similarity between those recruited via respondent‐driven sampling (RDS).MethodsSix sampling strategies were used and compared to explore their recruitment success: (1) RDS (i.e. peer‐to‐peer recruitment), (2) public and private women's Facebook groups, (3) Instagram, (4) researchers' network, (5) offline organizations (e.g., community centres and mosques), and (6) other channels (e.g. flyers, infographics, and information meetings). To do this, χ2 tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.ResultsOverall, 782 Moroccan‐ and 696 Turkish‐Dutch respondents were included in the analysis. Almost 40% filled out the questionnaire via RDS. RDS yields more often older, lower educated, and first‐generation immigrant women than average. Respondents recruited via RDS have more often low CC screening knowledge and make more often uninformed CC screening decisions than average. Social media channels, however, yielded more younger, highly educated, and second‐generation immigrant women than average. Sociodemographic characteristics and attitudes towards CC screening varied more strongly within than between network trees. The probability that paired respondents within a network tree had similar characteristics varied strongly depending on the characteristic.ConclusionsBy using RDS and asking respondents to recruit peers, the more hard‐to‐reach individuals (i.e. older, lower educated, and first‐generation immigrants) were reached. By using social media channels, younger, highly educated, and second‐generation individuals can be recruited. RDS yielded more often women with low CC screening knowledge and women making uninformed CC screening decisions. To reach the individuals in need of tailored information or an intervention conform their needs, we recommend to use RDS as an intervention delivery strategy.Patient or Public ContributionFollowing RDS, we involved Moroccan‐ and Turkish‐Dutch women in recruiting other Moroccan‐ and Turkish‐Dutch women. Through this recruitment, women were able to fill out our questionnaire, and watch our culturally sensitive educational video to improve their informed decision‐making in regard to the CC screening programme.

Recommendations for a Communication Strategy to Support Informed Decision‐Making About Self or Clinician Sampling for Cervical Screening in the UK: Qualitative Study

ABSTRACTBackgroundCervical screening for high‐risk Human Papillomavirus subtypes is offered to those eligible in the UK via the NHS cervical screening programmes. However, uptake of cervical screening continues to remain below the national target of 80%. Groups less likely to participate include people from low socioeconomic groups, ethnic minority backgrounds, younger/older age and/or LGBTQ group identity. The cervical screening‐eligible population could soon, for the first time in the UK, have a choice of mode between clinician taken or self‐sampling.AimsTo understand information and decision‐support needs of diverse cervical screening‐eligible individuals when presented with a choice of cervical screening mode and develop recommendations for a communication strategy to support informed decision‐making.MethodsQualitative co‐production explored communication preferences and decision‐support needs in a diverse sample of cervical screening‐eligible individuals using semi‐structured interviews with individuals eligible for cervical screening (n = 30) and stakeholders (n = 23). Interviews were transcribed, thematically analysed and mapped to behavioural and decision‐making theories to inform a communication strategy for offering choice in cervical screening mode in the UK.ResultsFour main themes across both participant groups were identified: misunderstanding of clinician screening, attitudes towards choice, communication launch preferences and decision‐support needs. Logic models to inform a communication strategy in preparation for the future launch of choice in cervical screening mode in the UK were developed.ImplicationsThe communication launch strategy can inform interventions to support informed decision‐making if HPV self‐sampling is incorporated into UK cervical screening programmes.Patient and Public ContributionTwo public partners were involved in the study from inception to completion. They advised on recruitment, participant facing documents and were involved in analysis.

The acceptability of, and informational needs related to, self‐collection cervical screening among women of Indian descent living in Victoria, Australia: A qualitative study

AbstractBackgroundIn July 2022, self‐collection became universally available as part of Australia's National Cervical Screening Program. This change aims to address screening inequities experienced among underscreened populations, including women of Indian descent. This study explored experiences of cervical screening, alongside the acceptability of self‐collection, among women of Indian descent living in Victoria, Australia. We also aimed to articulate the informational needs to promote self‐collection among this population.MethodsFive focus group discussions with 39 women living in Victoria were conducted in English (n = 3) and Punjabi (n = 2). Transcripts were thematically analysed, as informed by the Theoretical Framework of Acceptability.ResultsWomen were motivated by the choice to self‐collect, perceiving the ability to maintain modesty and greater autonomy as key enablers. Healthcare practitioners were seen as central in supporting patient‐centred models of care. Perceived barriers to self‐collection included concerns around its accuracy and women's confidence in collecting their own sample. Widespread dissemination of culturally tailored promotion strategies communicating concepts such as 'privacy' and 'accuracy' were suggested by women to promote self‐collection.ConclusionSelf‐collection was highly acceptable among women of Indian descent, particularly when assured of its accuracy, and sociocultural norms and previous screening experiences are considered. This study highlights the huge potential that self‐collection can play in increasing equity in Australia's cervical screening programme.Patient or Public ContributionMembers of the public were involved in focus group discussions. Findings were summarised and disseminated via a poster. A bicultural worker was involved in all stages of the research.

Exploring the sources of cervical cancer screening self‐efficacy among rural females: A qualitative study

AbstractAimEvidence showed self‐efficacy was relevant to rural females' cervical cancer screening behaviour. However, little is known about sources of self‐efficacy in cervical cancer screening among rural females. This study aimed to explore sources of self‐efficacy in cervical cancer screening among rural females.DesignA qualitative descriptive study was conducted. Both users and providers of cervical cancer screening services in rural areas of China were recruited through maximum variation sampling.MethodsIndividual semi‐structured interviews through telephone calls were conducted. Data were analysed via six main stages of the framework method, with the social cognitive theory as a reference.ResultsFour main sources were identified, including personal screening experience, hearing about other women's screening experiences, professional health education and consultation, and emotional status. Personal screening experience included enactive mastery of completing the screening behaviour and cognitive mastery of internalisation of the screening. Only the experience of completing cervical cancer screening behaviour was not strong enough to improve self‐efficacy. Cognitive mastery showed more critical influence.ConclusionThese four sources of rural females' cervical cancer screening self‐efficacy matched with the major sources of self‐efficacy of the social cognitive theory. Cognition was critical to influencing the screening self‐efficacy. Intervention strategies aimed at enhancing rural females' cervical cancer screening self‐efficacy can be developed from these four major sources.Public ContributionA registered nurse with rich experience in cervical cancer‐related research and qualitative study was the interviewer of this study. Rural females and cervical cancer screening services providers (healthcare professionals and village staff) were recruited as interviewees. The interview guides were developed by the research team and evaluated by an expert panel including two nurse leaders of gynaecological cancer, one doctor specialised in cervical cancer, and one medical director in a local rural hospital.

Investigating the Acceptability of Cervical Screening and Self‐Sampling in Postnatal Women at the 6‐Week Postnatal Check‐Up: A Qualitative Study

ABSTRACT Introduction There is a lack of evidence to support UK and international clinical recommendations to delay cervical screening to 12‐weeks postnatal. In previous studies, half of women were out of date for screening by the end of pregnancy and the majority would be more likely to take up cervical screening, if offered at the 6‐week postnatal check‐up. We explored views about postnatal cervical screening the acceptability of offering cervical screening, using conventional and urine self‐sampling, earlier within the postnatal period. Methods A cross‐sectional qualitative design was used with recruitment from a larger questionnaire‐based study. Twenty‐six online semi‐structured interviews were conducted with 26 pregnant or recently pregnant participants. Interviews were transcribed and pseudonymised. A topic guide was developed, and data analysed using inductive reflexive thematic analysis. Results Three themes were generated from qualitative analysis of verbatim interview transcripts: 1) A window of opportunity; 2) Am I ready yet? Postpartum recovery; and 3) Neglect of women's health in and around pregnancy. Overall, there was a perception that women's health was not a priority in the postnatal period compared with their babies. Conclusion This is the first study to use qualitative interview methods to explore women's views about the offer of cervical screening alongside the postnatal check‐up. Results support the feasibility of a clinical trial to test the accuracy and effect on uptake of offering cervical screening at the postnatal check‐up, although recognised it might be too soon for some. This should be considered in future feasibility research that includes assessment of concurrent acceptability. Patient or Public Contribution This study was performed following focus groups in a quality improvement project, designed to increase uptake of cervical screening in women and people who were pregnant or recently pregnant. The suggestion for combining cervical screening with the routine 6‐week postnatal follow up was an idea generated by new parents and GP practice staff. The Somerset Maternity Voices group provided feedback on study materials, including the consent form and posters. The semi‐structured interview topic guide was designed following free‐text comments in the pre‐PINCS web‐based survey, results of which are published separately. Female pregnant and recently pregnant people, regardless of current gender identity, were included in this study. In line with the Royal College of Obstetricians and Gynaecologists language guide, we will use ‘women’ to describe participants. Clinical Trial Registration Trial was registered with the National Institute for Health and Care Research Central Portfolio Management System (CPMS ID: 55489) and https://bepartofresearch.nihr.ac.uk/ .

Experiences of Self‐Sampling and Future Screening Preferences in Non‐Attenders Who Returned an HPV Vaginal Self‐Sample in the YouScreen Study: Findings From a Cross‐Sectional Questionnaire

ABSTRACTBackgroundWe assessed experiences of human papillomavirus (HPV) vaginal self‐sampling and future screening preferences in an ethnically and socio‐economically diverse group of women overdue for cervical screening.Setting and ParticipantsA postal questionnaire was embedded in the YouScreen self‐sampling trial in England: 32.5% (2712/8338) of kit completers returned the survey. Kit non‐completers were encouraged to return a questionnaire, but no responses were received. Participants were ethnically diverse (40.3% came from ethnic minority backgrounds), and 59.1% came from the two most deprived quintiles. Differences in confidence in kit completion, trust in the test results and intention to attend a follow‐up test if HPV‐positive were evaluated using Pearson's χ2 analyses. Binary logistic regression models explored predictors of a future screening choice and preferences for urine versus vaginal self‐sampling.ResultsMost kit‐completers reported high confidence in self‐sampling (82.6%) and high trust in the results (79.9%), but experiences varied by ethnicity and screening status. Most free‐text comments were positive but some reported difficulties using the device, pain or discomfort. Most women would opt for self‐sampling in the future (71.3% vs. 10.4% for a clinician‐taken test) and it was more often preferred by ethnic minority groups, overdue screeners and never attenders. Urine self‐tests were preferred to vaginal tests (41.9% vs. 15.4%), especially among women from Asian, Black or Other Ethnic backgrounds.ConclusionsKit‐completers were confident, found the test easy to complete, and trusted the self‐sample results. However, experiences varied by ethnic group and some women highlighted difficulties with the kit. Most women would prefer self‐sampling in the future, but it was not a universal preference, so offering a choice will be important.Patient or Public ContributionWe did not have direct patient and public involvement and engagement (PPIE) in the questionnaire design. However, patients and public representatives did input into the design of the YouScreen trial and reviewed the wider study materials (e.g. participant information sheet).Trial RegistrationThis questionnaire study was embedded in the YouScreen trial. The protocol for the YouScreen trial is available at https://www.isrctn.com/ISRCTN12759467. The National Institute for Health Research 43 Clinical Research Network (NIHR CRN) Central Portfolio Management System (CPMS) ID is 4441934.

Experiences of caring for women with cervical cancer: A qualitative study among male partners in Dar es Salaam, Tanzania

AbstractBackgroundMore than three‐fourths of cervical cancer cases occur in low‐ and middle‐income countries, with sub‐Saharan Africa (SSA) accounting for approximately 25% of global mortality. The significant rise in the prevalence of cervical cancer in SSA amplifies the burden on caregivers, contributing to elevated rates of mental illness, particularly among spouses who provide care. Men who assume the role of caregivers for their partners with cervical cancer encounter unique challenges and substantial adjustments across multiple facets of life, impacting both their own quality of life and that of their partners. Despite this, there is a notable lack of extensive research on the experiences of male partners in caregiving roles, particularly within SSA countries like Tanzania. Therefore, this study aimed to explore the experiences of male partners providing care for women with cervical cancer in Dar es Salaam, Tanzania.MethodsAn exploratory qualitative study was undertaken to explore the experiences of 13 male partners, selected purposively and guided by the principle of saturation. Data gathering employed in‐depth interviews utilizing a semistructured interview guide, with subsequent analysis conducted via a thematic analysis approach.ResultsFive themes and 13 subthemes were generated, encompassing psychosocial distress, attitudes towards cervical cancer, unity in the provision of care, economic burden, and altered sexual relationships. Participants reported experiencing emotional distress, shifts in social responsibilities, financial challenges, and unfulfilled sexual needs. Moreover, they expressed the need for social, psychological, financial, and sexual and reproductive support.ConclusionThis study underscores the numerous challenges encountered by male partners caring for women with cervical cancer, encompassing emotional distress, financial strain, and shifts in social and sexual dynamics. The identified themes and subthemes highlight the intricate interplay of these difficulties and stress the necessity for holistic support systems addressing the social, psychological, financial, and sexual aspects of male partners' experiences. The findings emphasize the importance of designing and implementing comprehensive support programmes tailored to the diverse needs of male partners, ultimately enhancing their quality of life and overall well‐being.Patient or Public ContributionBefore the study, the nursing manager assisted in selecting three male partners randomly. These partners were involved in the design of the participants' information sheet, the evaluation of the interview schedule and rooms, and the dissemination of information about the study's purpose to the target population. Their valuable input contributed to improving the participant information sheet, refining data collection procedures and addressing ethical considerations. However, these individuals were not considered study participants. Throughout the study, in‐charge nurses in the hospital were informed about the study's goals and helped organize appointments with participants and manage the interview schedule.

Experiences of cervical screening participation and non‐participation in women from minority ethnic populations in Scotland

AbstractBackgroundThe introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood.ObjectiveTo explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities.DesignQualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed.Setting and participantsThis study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed.ResultsMany experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported.ConclusionsKey differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work.

Translating new science into the community to promote opportunities for breast and cervical cancer prevention among African American women

AbstractBackgroundNew evidence has found breast and cervical cancer risk factors unique to African American women. Thus, there is a significant need to increase their knowledge and understanding of relevant risk factors and the potential protective benefits associated with breast‐feeding and HPV vaccination. The National Witness Project is a robust, evidence‐ and community‐based lay health advisor programme that uses group education, navigation and survivor narratives to increase cancer screening among diverse underserved women.MethodsA multi‐phase, community‐based participatory research study was conducted across three sites in Buffalo, NY, New York City and Arkansas between October 2016 and January 2017. Pre‐/post‐test surveys were administered during volunteer trainings and community programmes. An evaluation survey was also administered at the Annual Meeting for Education and Networking. Paired sample t tests were used to compare pre‐/post‐test survey scores.ResultsTrainee survey results showed the overall mean per cent correct pre‐/post‐test scores were 47.7% (SD: 21.87) and 79.2% (SD: 16.14). Altogether, 31 educational programmes reached 332 community participants. Participants’ breast and cervical cancer knowledge scores were significantly higher after the education programme (84.4%) than before (55.3%) with a mean change score of 29% (P ≤ .001).ConclusionThis paper reveals the underlying complexities to update the educational curriculum content of a multi‐site, community‐based outreach organization. The new curriculum significantly improved African American women's knowledge about breast and cervical cancer by 10%‐36%, clearly demonstrating that this information was new to them. The need for education programming in African American communities to disseminate cancer prevention and risk information remains high.

Preferences for interventions designed to increase cervical screening uptake in non‐attending young women: How findings from a discrete choice experiment compare with observed behaviours in a trial

AbstractBackgroundYoung women’s attendance at cervical screening in the UK is continuing to fall, and the incidence of invasive cervical cancer is rising.ObjectivesWe assessed the preferences of non‐attending young women for alternative ways of delivering cervical screening.DesignPostal discrete choice experiment (DCE) conducted during the STRATEGIC study of interventions for increasing cervical screening uptake. Attributes included action required to arrange a test, location of the test, availability of a nurse navigator and cost to the National Health Service.Setting and participantsNon‐attending young women in two UK regions.Main outcome measuresResponses were analysed using a mixed multinomial logit model. A predictive analysis identified the most preferable strategy compared to current screening. Preferences from the DCE were compared with observed behaviours during the STRATEGIC trial.ResultsThe DCE response rate was 5.5% (222/4000), and 94% of respondents agreed screening is important. Preference heterogeneity existed around attributes with strong evidence for test location. Relative to current screening, unsolicited self‐sampling kits for home use appeared most preferable. The STRATEGIC trial showed this same intervention to be most effective although many women who received it and were screened, attended for conventional cytology instead.ConclusionsThe DCE and trial identified the unsolicited self‐sampling kit as the most preferred/effective intervention. The DCE suggested that the decision of some women receiving the kit in the trial to attend for conventional cytology may be due to anxieties around home testing coupled with a knowledge that ignoring the kit could potentially have life‐changing consequences.

“Whilst you are here…” Acceptability of providing advice about screening and early detection of other cancers as part of the breast cancer screening programme

AbstractObjectivesThis research aimed to assess women's willingness to receive advice about cervical and bowel cancer screening participation and advice on cancer symptom awareness when attending breast cancer screening.MethodsWomen (n = 322) aged 60–64 years, living in the United Kingdom, who had previously taken part in breast cancer screening were recruited via a market research panel. They completed an online survey assessing willingness to receive advice, the potential impact of advice on breast screening participation, prospective acceptability and preferences for mode and timing of advice.ResultsMost women would be willing to receive information about cervical (86%) and bowel cancer screening (90%) and early symptoms of other cancers (92%) at a breast cancer screening appointment. Those who were not up to date with cervical cancer screening were less willing. Prospective acceptability was high for all three forms of advice and was associated with willingness to receive advice. Women would prefer to receive advice through a leaflet (41%) or discussion with the mammographer (30%) either before the appointment (27%), at the appointment (44%) or with their results (22%).ConclusionsWhile there is high willingness and high acceptability towards using breast cancer screening as a teachable moment for advice about prevention and early detection of other cancers, some women find it unacceptable and this may reduce their likelihood of attending a breast screening appointment.Patient or Public ContributionThis study focused on gaining women's insights into potential future initiatives to encourage screening and early diagnosis of cancer. Members of the public were also involved in piloting the questionnaire.

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

AbstractBackgroundEthnic 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.

Community‐based health literacy focused intervention for cervical cancer control among Black women living with human immunodeficiency virus: A randomized pilot trial

AbstractBackgroundHealth literacy plays an essential role in how individuals process health information to make decisions about health behaviours including cancer screening. Research is scarce to address health literacy as a strategy to improve cancer screening participation among women living with human immunodeficiency virus (HIV), particularly Black women who, despite the heavy burden of cervical cancer, report consistently low screening rates.AimTo assess the feasibility, acceptability and preliminary efficacy of a health literacy‐focused intervention called CHECC‐uP—Community‐based, HEalth literacy focused intervention for Cervical Cancer control—among women living with HIV.MethodsWe conducted a community‐based, single‐blinded randomized pilot trial. A total of 123 eligible women were enrolled and randomized to one of two conditions, control (i.e., cervical cancer brochure) or intervention (cervical cancer brochure plus 30–60 min health literacy‐focused education followed by monthly phone counselling and navigation assistance for 6 months). Study assessments were done at baseline, 3 and 6 months. The final analysis sample included 58 women who completed all data points and whose Papanicolaou (Pap) test status was confirmed by medical records.ResultsAll intervention participants who completed the programme would recommend the CHECC‐uP to other women living with HIV. However, adherence in the experimental conditions was low (49.6% attrition rate including 20 women who dropped out before the intervention began) due, in large part, to phone disconnection. Those who had received the intervention had a significantly higher Pap test rate compared to women in the control group at 6 months (50% vs. 21.9%, p = .025). Participation in the intervention programme was associated with improved health literacy and other psychosocial outcomes at 3 months but the trend was attenuated at 6 months.ConclusionsThe CHECC‐uP was highly acceptable and led to improved Pap testing rates among Black women living with HIV. Future research should consider addressing social determinants of health such as phone connectivity as part of designing a retention plan targeting low‐income Black women living with HIV.ImplicationsThe findings should be incorporated into a future intervention framework to fulfil the unmet needs of Black women living with HIV to facilitate their decision‐making about Pap test screening.Patient or Public ContributionNineteen community members including women living with HIV along with HIV advocates and care providers participated in four focus groups to develop cervical cancer screening decision‐relevant information and the health literacy intervention. Additionally, a community advisory board was involved to provide guidance in the general design and conduct of the study.

The development of a culturally sensitive educational video: How to facilitate informed decisions on cervical cancer screening among Turkish‐ and Moroccan‐Dutch women

AbstractBackgroundIn the Netherlands, all women aged 30–60 years are invited to participate in the national cervical cancer screening programme, which is aimed at early detection and treatment of precancerous lesions. One fourth of the Dutch population has a migration background, with Turkish and Moroccan immigrants being the largest immigrant populations. Turkish‐ and Moroccan‐Dutch women show lower screening participation rates and a higher incidence of cervical cancer, compared to native Dutch women. Since current information materials are not tailored to these women's needs, we developed a short culturally sensitive educational video to facilitate informed decision‐making for cervical cancer screening among Turkish‐ and Moroccan‐Dutch women. This article describes the development process of this video and the lessons learned.MethodsUsing the Entertainment–Education communication strategy, we collaborated with an interdisciplinary team of Turkish‐ and Moroccan‐Dutch women, researchers, public health experts, and creative media professionals. We developed the video following the different stages of the Media Mapping model: Orientation, Crystallization, Design/Production, Implementation, and Dissemination. Each stage is described in the paper.ResultsThe video was developed in Moroccan‐Arabic, ‐Berber and Turkish, and emphasized three main themes: (1) more certainty about having cervical (pre)cancer and the possibility to prevent treatment, surgery, or premature death, and because of this, being there for the children, (2) according to the Islam, a woman should take good care of her health, and (3) anxiety, shame, and privacy.ConclusionsA short culturally sensitive educational video, delivered as part of a larger intervention together with the current information brochure, was developed based on theory and grounded in the needs of Turkish‐ and Moroccan‐Dutch women. The value and effectiveness of this intervention to facilitate informed cervical cancer screening decisions are evaluated in a randomised controlled trial.Patient or Public ContributionWe collaborated with Turkish‐ and Moroccan‐Dutch women during the development process of a short culturally sensitive educational video. Turkish‐ and Moroccan‐Dutch women were also invited to watch the raw footage to verify whether the content and presentation matched their needs and requirements.