Abstract
BACKGROUND OR CONTEXT: Overdiagnosis and overtreatment have been acknowledged as harms of the NHS Breast Screening Programme (BSP) due to the uncertainty around if, or how, non-invasive and invasive cancers identified through screening will progress. Importance is therefore placed on encouraging individuals to make an informed choice about whether to participate in screening and any follow-on interventions. Even though all screening programmes generally state explicitly that individuals should have the freedom to choose, research into wider cancer screening programmes shows how disclosing a decision to decline may be regarded as problematic by others. However, literature exploring experiences of disclosing the decision to decline breast screening or subsequent interventions within the UK context is limited. OBJECTIVE: We explore women's experiences of disclosing the decision to decline screening, treatment and/or other recommended medical interventions after being invited to the NHS BSP, to understand how making the decision to decline breast screening and/or breast cancer treatment was received by others. DESIGN: Semi-structured interviews. SETTING AND PARTICIPANTS: Twenty women who had made the decision to decline screening, treatment and/or other interventions recommended after being invited to the NHS BSP were recruited through social media, online forums and word of mouth. RESULTS: Some of the women discussed responses from their family and friends when disclosing their decision to decline and explained how they received supportive responses from some and negative responses from others. Difficulties in disclosing their intention to decline healthcare professionals were also discussed by some of the women. Receiving unsupportive responses meant that some of the women felt hesitant about how and where they disclosed their decision. CONCLUSIONS: To varying degrees, the findings revealed the burden of having to explain and account for the decision to decline and manage the potential reaction to this as not acceptable. PATIENT OR PUBLIC CONTRIBUTION: Before recruitment and data collection commenced, we sought feedback from an individual with lived experience in declining breast cancer screening and treatment due to concerns about overdiagnosis and overtreatment. This individual provided valuable insights on the study design and the most effective methods for recruiting participants from the targeted population. Additionally, a topic guide was developed for the semi-structured interviews, which was then tested through a pilot interview with the same individual. The feedback from this pilot interview was instrumental in refining and improving the topic guide.