Scottish Breast Screening Programme: major review

Learning from Women who do not Attend for Breast Screening

Exploring barriers and facilitators to breast screening uptake among disadvantaged groups and communities in Scotland

The review commissioned a study via NHS Health Scotland (now part of Public Health Scotland) to explore the barriers to breast screening uptake among disadvantaged groups and communities. The study aimed to explore the barriers and enablers for women who don't attend for breast screening, and to provide recommendations to the Review.

Specific objectives included:

• To explore women's knowledge and understanding of the breast screening service generally and how it relates to other screening and healthcare decisions they make.
• To identify whether they considered attending for breast screening when invited and what factors impacted their final decision not to attend.
• To identify whether there was anything about the time, location or set up of the service that impacted their decision not to participate.
• To explore what, if anything, would encourage them to participate and what, if any, options they feel would improve the breast screening service for them.
• To explore any other barriers that have impacted their participation in screening.
• To explore any other enablers that would make them reconsider attending screening.
• To identify learning on improving uptake to inform the Scottish Review of Breast Screening.

A qualitative approach was adopted to enable detailed exploration of women's attitudes to, and views of, breast screening. Individual depth interviews were deemed to be the most effective method as it would provide a more comfortable and intimate environment for discussing this sensitive topic.

It was originally intended that these interviews take place face-to-face in the respondent's home. However, due to the COVID-19 outbreak and subsequent lockdown immediately prior to the fieldwork period, this was changed to a telephone interview method. A total of 36 depth interviews were conducted, with each running to around 60 minutes in duration, and conducted by senior researchers.

All interviews were undertaken in privacy in the respondent's own home, across Health Board areas where minimum uptake standards of 70% were not met in the period 2015/16 to 2017/18: NHS Greater Glasgow & Clyde, NHS Lanarkshire and NHS Lothian and NHS Fife. Urban, semi-urban and rural locations were covered.

The audience of interest to this study was women aged 50-70 living in Scotland's most deprived communities who do not engage with the breast screening programme, ie these individuals were not representative of the screened population as a whole. Of specific interest were the views of the following groups:

• women aged 50-54 who live in deprived communities
• eligible women who are living in rural deprived communities
• eligible women with a disability living in deprived communities.

A summary of key results, conclusions and recommendations is outlined below. The full study report is appended at appendix 3.

Summary of key results

The factors impacting on uptake of breast screening amongst this target audience spanned three key contexts: individual, social and environmental, with the extent of influence of each varying across the sample.

Individual factors: Three key areas of misconception about breast cancer and screening were evident: a strong association of the risk of breast cancer with having a family history of the disease, an association of the risk of breast cancer with older women (70+ years), and some sense that breast cancer is less 'hidden' than other cancers, and as such that there was little need to attend for breast screening if self-examination revealed no lumps.

Social factors: Breast screening was not perceived by the majority of this audience as having become normalised. This was due to a perception that neither breast screening nor breast cancer had high salience in their own social context or in the wider media. Furthermore, personal conversations and mutual encouragement to attend for screening appeared to be limited, with some cultural taboos remaining with respect to talking about or exposing their breasts.

Environmental factors: A number of factors relating to the design and delivery of the breast screening service impacted on (regular) uptake and served to reduce the sense of ease of attendance and further bolstered emotional reservations.

Consideration of attendance -

A pre-set breast screening appointment encouraged consideration of attendance, with many admitting that they would not proactively make an appointment. Active consideration was largely limited to the first appointment however, with emotional reactions often driving behaviour in respect of subsequent invitations (usually based on earlier experience).

Barriers to attendance -

These encompassed both practical and psychological barriers:

• Screening appointment: time, location, availability

The unpredictable nature of both work patterns and personal circumstances meant that forward planning to accommodate pre-set appointments could be difficult. Furthermore, many were reluctant to ask for time off work to attend screening appointments as they felt these were not viewed as a priority by their employers.

In semi-urban and rural areas, the limited availability of appointments in a local venue served to increase the inconvenience of attendance, with travel to other towns adding to the time and cost involved in accessing the screening.

For women with a disability, travel to a venue which was not local posed a range of additional considerations such as increased anxiety and greater inconveniencing of the individual who would accompany them to the appointment. Consideration of physical access needs and the anxiety caused by a time restricted appointment constituted further barriers for some of these women.

• Screening venue: siting and set-up of mobile units

Siting of mobile screening units within local supermarket car parks caused emotional discomfort for some. The external branding of the units was perceived to overtly indicate their purpose, with a sense of personal embarrassment further increased by the unit's very public entrance.

The environment of the mobile units themselves was perceived by many to be sterile and unwelcoming, which together with the minimal personal engagement from staff reported by some, served to increase any existing anxiety.

• Screening procedure: impersonal experience

The entire experience (pre, during and post the x-ray) was described as functional and detached which served to engender a sense of vulnerability and lack of personal control.

Some women perceived screening staff attitudes to be uncaring and reported that they were made to feel as if they were making an unnecessary fuss or exaggerating the discomfort.

• Screening procedure: personal discomfort

Experience of pain during the mammogram and or embarrassment at being naked from the waist up was a strong barrier to attendance.

Conclusions

Whilst the women in this target audience had high level awareness and understanding of the purpose and process of breast screening, its importance and self-relevance was not acknowledged by a significant proportion of them.

The inconvenience of appointments presented practical barriers which hindered uptake. The current system for scheduling appointments has a number of drawbacks:

• - Pre-set appointments that are several weeks in the future are often not helpful for this audience who cannot always predict their work or family commitments so far in advance.
• - The inability to schedule appointments out with working times makes attendance difficult for many.
• - There is limited awareness that appointments can be cancelled or rescheduled, and the need to telephone within working hours to do so is inconvenient.
• - Limited appointment time flexibility, particularly in semi-urban and rural locations, leads to appointments not being pursued.

The location and design of the screening venue can constitute further barriers to uptake:

• - Where the screening venue is not local, travel time, inconvenience or the cost involved can limit access, particularly in semi-urban and rural locations.
• - The accessibility of the mobile units can be an issue for women with restricted mobility, many of whom were not aware that adjustments could be made if requested
• - Attendance at a mobile unit can serve to limit willingness to considered breast screening: perceived to lack discretion from the outside, with the internal environment viewed as sterile, cramped and lacking sufficient privacy.
• - Limited emotional accessibility can also an issue for those attending mobile units as there is no or limited opportunity to be accompanied.

Psychological concerns constituted a significant barrier for some of the women in this target audience. These related both to the embarrassment and pain experienced during the screening process, but also to perceptions of the impersonal nature of the process, and the lack of empathy and understanding from screening staff. The resulting sense of unacceptability of the experience impacts negatively on preparedness to consider further screening appointments and leads to the spread of adverse stories.

Recommendations

The following is recommended for consideration in helping to increase the uptake of breast screening amongst this target audience:

• Improve the understanding and perceived value of breast screening

Media campaigns will help to communicate both the value of screening and to provide cultural contextualisation by clarifying the prevalence of breast cancer in Scotland and the populations at risk. There are advantages to employing a variety of channels to help convey the importance of breast screening (e.g. television advertising) and its relevance to this audience (through trusted sources using social media channels for example). The value of screening can be emphasised through GP reinforcement, and normalisation within these communities will be helped by encouraging informal conversations (between both peers and health professionals), for example on social media.

• Increase the convenience of appointments

Greater flexibility of appointment scheduling and availability would enable better access and uptake. Consideration should be given to a range of service elements: reminder texts or telephone calls which can help to retain screening appointments on the radar, an online appointment cancellation and rebooking system to provide a greater sense of individual control and convenience, and evening and weekend appointments for those who find it hard to adjust weekday commitments or rely on support from others. Increased appointment availability in rural and semi-urban locations would provide some flexibility for women in these areas.

• Increase the user-friendliness of screening venues

This should be considered at both a practical and an emotional level. Co-location of breast screening services with existing GP or well woman services would facilitate attendance by providing a local, familiar and professional environment, together with more discreet access to the service. At a psychological level, these venues were perceived to be friendlier, with the expectation of a more personalised experience and the opportunity to be accompanied. Larger mobile units with 'warmer' waiting areas can also help to provide a more reassuring environment. Better communication of the adjustments that can be made for women with disabilities is key, ideally though personalised invitations.

• Improve the acceptability of breast screening

There is a need for better engagement with women to demystify the screening process and provide reassurance. This could take the form of informal social support via social media channels, enabling telephone or online support e.g. live chat, peer conversations, and the sharing of positive stories from women who have been screened. Facilitating easy access to concise, straightforward information and honest description e.g. videos of the process would also be helpful. Engagement and empathy during the appointment is vital in encouraging repeat screening. Mammographer sensitivity and consideration is key, and longer appointment times or (peer) support in the waiting area would enable questions to be asked and reassurance provided. The use of gowns that do not need to be fully removed while the mammogram is being taken would also help in addressing the modesty concerns.

Taking forward the study findings

The insights and key themes from the study findings and identified actions were collated by the review team and used in the review process to support individual workstream areas.

Additionally, study findings were shared to support Screening Service Design work developing in the National Screening Oversight Function. Key findings and actions were presented against the 'User Journey' framework of Awareness; Engagement; Experience.

A facilitated workshop with key stakeholders in the NHS, community and voluntary sector was planned in order to maximise engagement and build consensus around the findings. NHS Board Equality Leads were initially engaged to support this next stage work, however due to Covid impact both on the research timetable and within the service this was not taken forward. The conclusions and recommendations arising from the study would however usefully support future public engagement and consultation on taking forward the major recommendations of this review.

A facilitated workshop with key stakeholders in the NHS, community and voluntary sector was planned in order to maximise engagement and build consensus around the findings. NHS Board Equality Leads were initially engaged to support this next stage work, however due to Covid impact both on the research timetable and within the service this was not taken forward. The conclusions and recommendations arising from the study would however usefully support future public engagement and consultation on taking forward the major recommendations of this review.

It is important to note that the research deliberately selected participants on the basis of previous low/non-engagement with breast screening, with a view to find ways to reduce the barriers to screening in this "hard to reach" group. Their views are therefore not representative of the wider screening population. Centres undertake regular participant feedback questions and generally report good levels of satisfaction with the service.