Translating qualitative data into intervention content using the Theoretical Domains Framework and stakeholder co-design: a worked example from a study of cervical screening attendance in older women

Cancer of the cervix is one of the most preventable forms of the disease: pre-cancerous cells can be identified using a screening test and treated before they develop into cancer. Public cervical screening programmes are provided in many countries, but do not generally reach target participation rates [1]. Reviews of interventions to encourage screening uptake demonstrate that cervical screening programmes face different challenges to breast and colorectal screening [2, 3]. Cancer screening is targeted by age and gender: in England, women aged 50 to 70 are invited for breast screening, men and women aged 60 to 74 for colorectal cancer screening and women aged 25 to 64 for cervical screening. Cervical screening is stratified further, transitioning from 3-yearly to 5-yearly screening from the age of 50.

Cervical screening also differs from breast and colorectal screening in other ways. Screening the cervix is an invasive procedure, requiring a sample from inside an intimate area of the body. Having this procedure carried out by a GP or practice nurse can cause embarrassment or distress [4, 5]. Health beliefs surrounding cervical cancer can also affect attendance – for example, stigma and perceptions of risk arising from the association of cervical cancer with promiscuity [6‐8]. Research into barriers that keep women from attending for screening suggests that a multiplicity of demographic and cultural factors also contribute to decision-making [9, 10], in addition to health knowledge and structural issues such as the costs associated with taking time off work or travelling to appointments [5, 11].

In 2019-20, a preliminary test was introduced for human papillomavirus (HPV), a common, symptomless infection which can be contracted from a single sexual contact and is the main causal factor in the development of cervical cancer. Prior to this test becoming standard in the UK, all screening samples were subject to cytology (examining cells from the cervix for pre-cancerous changes); under current protocols, only those which are positive for a high-risk strain of HPV are now taken forward. Vaccination to protect against HPV was introduced for girls aged 12-13 in the UK in 2008, with the eldest girls to benefit now aged 30-31. The vaccine is not routinely given to older women as it offers less protection and is less cost-effective [12], leaving them at greater risk. Home testing for HPV is currently being trialled in the UK [13]; if this approach is successful, women over 50 will need encouragement to engage with home testing. Where a HPV test is positive, they will subsequently need to attend their GP surgery for a cervical screening test.

Among the demographic factors, age is now playing a key role in the challenges facing cervical screening programmes. In the UK, a quarter of women aged 50 to 64 do not attend free screening offered by the National Health Service, and rates for attendance drop further at the top of this age range [14‐17]. Evidence suggests that women over 45 are more likely to make the decision to stop attending than younger women [5, 8], to cite past traumatic experiences as a reason for non-attendance [4, 18, 19], and to experience the screening procedure as more painful [20]. Current evidence predicts a potential rise of more than 60% in rates of cervical cancer among older women by 2036 [21], suggesting an urgent need for targeted interventions to engage women in this cohort with home testing and cervical screening.

The impact of initiatives to encourage screening uptake is often low, localised or short term [7, 22‐24]. In the European literature, interventions are largely task-focused, based on raising awareness by altering the content or source of information provision [2, 3]. Evidence from Africa and America suggests that consciousness-raising alone, while increasing women’s knowledge and awareness of the benefits of screening, does not necessarily translate into action [7, 24‐26]. Engagement with screening requires behavioural change, and behavioural change is shaped by social and environmental context. Successful interventions beyond Europe have often developed around community education initiatives, and demonstrate how stakeholder involvement in intervention development can tailor interventions to fit local social and cultural contexts [27‐29].

In the UK, Medical Research Council (MRC) guidelines for complex interventions [30] and National Institute for Health and Care Excellence guidelines [31, 32] emphasise the need to ground behaviour change within a theoretical framework. The explicit use of theory also allows us to understand the mechanisms of influence of such interventions and to replicate these [33]. Systematic review evidence demonstrates the effectiveness of the application of theory in this way [34‐36]. Studies which have used behavioural theories to develop their interventions have shown more success in increasing screening rates [37, 38]. Crucially, these interventions take social determinants into account [3, 39] – those that influence women’s attitudes and health beliefs, including, for example, factors shaping women’s past experiences of screening and perceptions of risk. Many studies cite the use of theory to identify methods of behaviour change, but fail to describe in detail how theoretical constructs are transformed into intervention content [40‐43]. Transparency about this process will broaden the toolbox for future intervention development, and enable more effective evaluation [33].

In this paper, our aim is to describe how barriers and facilitators to attending cervical screening, identified in qualitative data from a primary research study grounded in a constructionist epistemology [44], were categorised into theoretical constructs and used to identify appropriate behaviour change techniques. We then describe the stakeholder co-design of the content and mode of delivery of two pragmatic interventions: a service-user leaflet and a video animation for practitioners, for use in primary care (doctors’ surgeries and associated health networks) in the UK.

The majority of the barrier/facilitator data clustered beneath three TDF concepts: beliefs about consequences, social influences and emotion, and smaller clusters of data corresponded with beliefs about capabilities and deficits in knowledge. Examples of data mapped on to the domains are given in Table 3. The mapping framework from Appendix B of Michie et al. [46] was used to match the three most prevalent TDF concepts with appropriate behaviour change techniques: persuasive communication and the provision of information regarding behaviour/outcome to address beliefs about consequences, stress management to address difficult emotions, and role modelling and encouragement to harness social influences (see Table 2).

There is evidence that the use of behavioural change theory can increase the success of interventions [56, 57]. This approach has been used to develop a limited number of cancer screening programmes to increase the chances that knowledge will translate into action [3]. In this study, our intentions in using a theoretical approach were twofold: (1) to explore the determinants that mediate between thinking about attending for cervical screening beyond the age of 50, and acting on those thoughts, and (2) to use our findings to shape focused intervention content through stakeholder engagement. This discussion will explore the potential benefits and drawbacks of these processes.

The analytic framework of our primary study provided a guide to recoding our data into barrier and facilitator statements. Our interview study demonstrated that the determinants of screening attendance are not only shaped by the psychological and physical changes women experience as they age, but by relational aspects of the screening encounter – specifically, women’s interactions with GP practice staff, individual screening practitioners, peers and sexual partners. Themes describing emotional difficulties and misunderstandings about cervical cancer guided us towards barrier statements related to the existing cervical screening literature, themes describing practitioner challenges in the screening encounter provided additional barrier statements, and themes exploring women’s sexual histories and mother/daughter and patient/practitioner relationship-building provided the majority of facilitator statements.

In the original qualitative study, participants were not asked to interpret their experience through the lens of theoretical domains during the interview. Cervical screening was a sensitive subject, and interviews focused on eliciting interviewees’ experiences of intimate screening, to avoid leading the agenda surrounding attendance. We would argue that structuring interview schedules around the domains of the TDF [58] runs the risk of placing the agenda too firmly with the theoretical framework at the expense of exploring the main characteristics of the experience under question.

For our study, the free coding from the original qualitative study analysis aggregated data on barriers and facilitators as they emerged from stakeholders’ descriptions of experience. Given that barrier and facilitator statements are quantified when they are assigned to the TDF, the selection of salient domains to pursue with behaviour change techniques was driven by the elements of screening that interviewees chose to talk about in relation to our research question (‘How does aging affect women’s experiences of decision-making about attendance for cervical screening?’). This hybrid approach [59], with deductive theoretical coding informed by an initial inductive analysis, allowed the stakeholder perspective to remain central and drive the distribution of barrier and facilitator statements in a way which remained true to participants’ experiences.

Matching barrier and facilitator statements to the theoretical domains of the TDF was a subjective process involving collaboration and negotiation between the research team in face-to-face meetings. Where the placement of statements was contested, the team were able to reach agreement over which statements best represented which domains. Intervention development via focus groups allowed the team to present and discuss the results of this process with stakeholders. This provided a structure for stakeholder consultation, and an opportunity for ‘member checking’, with participants able to review and confirm which aspects of the team’s decision-making made sense to them [60‐62]. It also enabled the research team to explore how intervention content and mode of delivery might resonate with its intended audience.

The original study on which this paper is based was conducted in 2016-18. The theoretical principles used in the study have developed considerably – not only have citations of the TDF increased exponentially since the framework was first created, but the pace of change and refinement has been fierce, leaving published study methodologies lagging behind theoretical developments [46, 51, 53, 55, 63]. Further exploration of behavioural constructs have been systematic and methodical, and the protocol for developing intervention content from qualitative data described in this paper is replicable using the more recent Theory and Techniques Tool [54] to map the TDF domains on to behavioural change techniques.

Despite the broadening literature describing the use of behavioural theory to develop interventions, there is ongoing debate about the efficacy of this approach [43]. In the area of cervical screening, existing interventions to encourage attendance are not easily comparable – reviews evidence a great deal of heterogeneity in study designs and a lack of description of the foundations of intervention content, and often fail to include lessons learned from the successful engagement of stakeholders in community based approaches. We would argue that the use of theory can focus the intervention development process and keep intervention content aligned with the priorities of stakeholders. The Theoretical Domains Framework, in combination with the Theory and Techniques Tool [54], offers a stepwise, auditable protocol for developing intervention content which is amenable to clear reporting and replication in different local contexts. The detailed reporting of protocols for translating qualitative research into intervention content is imperative to achieving transparency, consistency and quality in the material that we chose to test and evaluate. It will also allow a deeper exploration of how stakeholder perspectives might successfully contextualise interventions for specific local populations.