Research and analysis

Appendix A: focus group findings, themes and implications

Published 23 July 2026

The focus groups revealed 3 interconnected themes. Participants:

• valued the reassurance and expertise of healthcare professionals during clinician-led screening, expressing concerns about the accuracy and emotional support absent in self-sampling
• were curious and sometimes sceptical about the motivations behind introducing human papillomavirus self-sampling (HPV SS), with some fearing it was driven by cost-cutting rather than patient empowerment
• talked about some confusion around clinician follow-ups after self-sampling, emphasising the need for clear information about what follow-ups mean

Across all themes, participants stressed the importance of supportive, transparent communications that present self-sampling as a genuine choice, use neutral and respectful language, and provide clear, practical guidance to help individuals feel informed and confident in their decisions.

Theme 1: The reassurance that comes from interacting with healthcare professionals

Participants consistently emphasised the emotional and procedural reassurance derived from being tested by a healthcare professional. Even for those who found clinician-taken sampling uncomfortable, there was a strong sense that the presence of a nurse offered both practical expertise and interpersonal support. The physical act of having the test done by a trained individual conferred legitimacy and confidence in the accuracy of the result.

Many participants questioned whether self-sampling could produce equivalent results, particularly in terms of anatomical depth and technique. A common query emerged around why the method used by a nurse would differ from the method expected of a patient at home.

As one participant put it, “If you don’t have to go up as high as the nurse does then why does the nurse have to go all the way?” This quote encapsulated broader scepticism about whether self-collection could yield comparable sample quality.

Despite acknowledging the discomfort associated with clinician-taken sampling, participants shared that nurses’ expertise provided reassurance that the test was conducted correctly.

One noted, “It’s not nice but at least you know it’s been done right, they know what they’re doing.” Others valued the opportunity to ask questions, receive immediate clarification, and feel cared for. Factors seen as absent in the self-sampling model.

The emotional tone of these discussions revealed that, for many, clinician involvement was about more than medical accuracy. It was also about feeling safe, supported, and connected to the healthcare system. This support was seen as particularly important in an area as sensitive and potentially anxiety-provoking as cervical screening. The removal of this personal connection raised concerns about alienation and self-doubt during an already vulnerable process.

Another dominant concern centred on the absence of immediate validation or reassurance in the self-sampling process. Participants worried that they might perform the test incorrectly without knowing, which could lead to delays in diagnosis or the need to repeat the procedure. This was seen as not only emotionally taxing but also as potentially dangerous.

Participants expressed apprehension and even frustration at the idea of having to wait without knowing whether the sample they had submitted was viable. One commented, “What if I don’t do it right? Will they even tell me?” Another echoed this anxiety, saying, “Will I just be called back again without knowing why?” These uncertainties created a sense of ambiguity. This was a stark contrast to the more structured and reassuring pathway of clinician-taken sampling.

There was also a strong narrative around the risk of false negatives, with many participants suggesting that errors in self-sampling might lead to missed diagnoses. This concern reinforced their perception that a nurse would be more likely to obtain an accurate sample. One participant remarked, “It just adds more worry, like what if I get it wrong and then something gets missed?” This fear compounded their broader uncertainty about the accuracy of self-sampling.

Finally, participants flagged the systemic implications of errors in self-sampling. They assumed the NHS would have to carry the burden of repeat testing and that these inefficiencies could strain resources and cost money. Additionally, there was a concern that if mistakes were common, individuals would end up being called in for clinician-taken sampling anyway, undermining the very purpose of self-sampling. This led some to question, “If it’s going to mean more admin and I’ll have to go in anyway, why do it at home in the first place?”

Theme 2: knowing the ‘true’ motivations behind the offer of self-sampling

Participants voiced curiosity about the underlying rationale for introducing HPV SS. While many were open to the idea in principle, several questioned whether its introduction was motivated more by cost-cutting than patient empowerment. There was concern that convenience was being prioritised over care quality.

This perception was captured by one participant who said, “Is this just to save money? Will they stop offering appointments soon?” Another added, “Are they trying to push the cost onto us eventually?” These quotes speak to a level of mistrust in system-level changes that appear to reduce direct engagement with healthcare professionals.

Concerns also surfaced about the potential erosion of NHS services. Some participants feared that the convenience of at-home testing might be used to justify the withdrawal of traditional screening methods. This raised some concerns that future care could be depersonalised, or worse, optional. One participant reflected, “Self-sampling might mean the end of screening as we know it.”

Theme 3: the role of clinician follow-ups appointments

The concept of follow-up care generated significant confusion. Many participants accepted that follow-up appointments were a natural part of screening, especially if results were inconclusive or required further investigation. However, even after an explanation of the process of follow-up for HPV-positive self-sampling results, they lacked clarity on what specific outcomes would lead to a clinician follow-up after self-sampling.

For example, one participant asked, “Why would I be called back? Does it mean something’s wrong?” Others misinterpreted follow-up invitations as a sign of an invalid test, rather than a standard part of a clinical pathway. This led to confusion and where some participants could be led to believe a follow-up would imply they had done the test incorrectly. 

Ultimately, participants wanted clear, upfront information about the role of clinician follow-up and what different outcomes, from self-sampling, might signify . The lack of this information bred assumptions that could damage trust in the system. Communicating the specific outcomes that would lead to a clinician follow-up (such as routine follow-up for HPV-positive results) emerged as a crucial need, both to manage expectations and preserve the credibility of HPV SS.