Disclosure and supportive communication patterns in the cancer pre-diagnosis phase

Abstract

Health-related disclosure decisions can be a source of both distress and social support. Using Greene’s Disclosure Decision-Making Model (DD-MM) as the theoretical framework, this research assesses disclosure and support needs of individuals within the cancer pre-diagnosis phase (i.e. undergoing advanced testing for cancer due to troubling symptoms). Fifty-five participants who had undergone a cancer diagnosis experience within the last 5 years were interviewed about their social support needs during the cancer pre-diagnosis phase. The pre-diagnosis phase is unique in the disease trajectory because extensive uncertainties remain surrounding symptom causes, diagnosis, and prognosis. Through thematic analysis, two macro-level themes were identified focused on selective disclosure and social support. Subthemes, including testing unawareness or denial, a unique form of pre-diagnosis stigma, letting the patient set the tone, and support preferences from similar peers, are developed within. Collectively, these findings demonstrate how the DD-MM operates under diagnostic uncertainty, where minimal health information reshapes all three factors of the model. This research also offers practical advice for pre-diagnosis patients, supporters, and healthcare providers.