Author: Hannah Long

As part of my PhD at the University of Manchester, I have undertaken a systematic review and synthesis of qualitative research of women’s experiences of having a false positive test result (a ‘false alarm’) in breast screening. These results occur when a woman’s routine screening exam comes back as inconclusive and she is recalled, by means of a letter, for further tests that eventually show she does not have cancer. During data analysis, I got the sense that women occupy quite a passive role as they go through screening and I have wondered about the potential implications of this.

The women in the studies describe an obedient acceptance of the invitation to be screened. There appeared to be the attitude that going to screening is something ‘you just do’. Many women describe feeling surprised to receive a recall letter; they are not expecting it. They quickly consider the possibility that they may have breast cancer, but they cannot know for certain until they have had the extra tests. Some women perceive that they have no choice in this – they have to wait and they have to undergo these extra tests. While waiting, many women feel that they have entered a state of uncertainty about their health, which is often stressful and difficult to live with. Confronted with the potential of something as frightening as breast cancer, and not wanting to miss a possible cancer, women may feel that they have to do whatever it takes to be sure one way or the other. In this situation, they rely on the experience, expertise and good judgement of healthcare professionals to see them safely through it.

The uncertainty that many women describe usually abates when they receive their final result. However, for some women, ambiguous explanations of the reasons for their recall and what their additional tests have shown leave them with unanswered questions, which may contribute to lasting uncertainty and breast cancer related worry. I have wondered why this may occur: what is (or is not) taking place during the recall appointment and in the communication of their results? Could the dynamic between the healthcare professionals and the women be a factor? Do women not feel empowered to ask questions to clarify their results or alleviate their concerns?

In the UK, any passivity may be in part a result of the national breast screening programme’s set up. The programme screens a huge number of women each year – over two million in England alone – and must be as cost- and time-efficient as possible. Breast screening is by appointment only; women receive a letter inviting them to a pre-allocated appointment at a designated clinic. These decisions are made for them, requiring no ‘active’ part on behalf of the women involved, and this may set the tone for their subsequent engagement with the service.

At this point in an earlier draft of this blog, I got writers block and very nearly scrapped this piece for another idea. Until I realised that the problem I was having is that I found myself thinking quite critically of this ‘passivity in women’ finding. It’s a bit of a problem, right? There has been a significant shift in the doctor-patient relationship from a traditional paternalistic model to a new model that recognises the importance of an informed, autonomous patient. Thus, having more autonomous patients in healthcare is something we, as researchers and healthcare professionals, are collectively aiming for. Plus, I am a feminist; of course I want women to feel empowered in their decision-making! However, it is probably not as simple as that. Yes, patient-centred care and shared decision-making are both important. But exactly how much autonomy do people want when it comes to their healthcare?

I can see how important shared decision-making, and feeling informed and autonomous, could be in the case of chronic conditions that have complex treatment options, with no clear right or wrong answer. However, in the context of false positive screening results, it is understandable when women who are ‘in limbo’ just want to do as the doctor says when faced with the possibility of something as scary as breast cancer. Yet, it is still a situation in which women could and should have a say in what happens next, if they want to. For example, whether to undergo the extra tests (such as a repeat mammogram or surgical biopsy) at the recall appointment or whether to instead employ ‘watchful waiting’ and return for a subsequent screening earlier than their next routine appointment would usually take place, to see if anything has changed. However, in a time of encouraging more active patient engagement, what is not clear from my review is: to what extent do women in the breast screening programme want to be more autonomous?

Hannah Long, PhD student in the Manchester Centre for Health Psychology

@hannahlong_hl