Hobson’s choice or a horned dilemma: a grounded theory on adherence to adjuvant endocrine therapy verified with breast cancer survivors

PURPOSE: A literature review and meta-synthesis of qualitative research had enabled us to develop a grounded theory explaining the difficulties breast cancer survivors face with the initial decision to accept long-term endocrine therapy, and the everyday challenges of continuing or deciding to stop treatment early. Our objective was to interview a cohort of women in a UK setting to corroborate and complete the grounded theory with the end users’ primary involvement. METHODS: A semi-structured interview schedule was written based on the existing grounded theory. Fourteen women with a history of hormone-positive breast cancer were recruited and interviewed. The audio-recorded interviews were transcribed and analysed against the existing grounded theory. RESULTS: The findings were compatible with the core theory ‘Hobson’s choice or a horned dilemma’ and its constituent categories previously developed, with additional concepts identified and added to our paradigm models. Importantly, we found that some women who started with a strong sense of commitment to their treatment changed their mind as they experienced the medication side effects over time, impacting on their persistence with long-term endocrine therapy. CONCLUSION: The findings indicate an opportunity for health providers to intervene and influence women’s waning perceptions of the necessity of their treatment, for example upon experiencing the side effects. Interventions could involve the provision of side effect management strategies via accessible resources. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-022-07435-2.