Experiences of prognosis disclosure versus nondisclosure among family caregivers of persons with advanced cancer

Abstract

Caregiving in the South Asian context is often assumed by family automatically for the person with cancer (PWC). In this paper, we applied the disclosure decision-making model (DD-MM) to understand the motives behind cancer prognosis disclosure (or not) by caregivers to the PWC. Fifty caregivers participated in semi-structured interviews; and data were analyzed using Framework Approach. For the disclosing caregivers, some of the themes that emerged were consistent with the DD-MM framework while others were not. In particular, the theme “recipient assessment” was part of the DD-MM framework, while others such as unmet communication needs, caregiver self-reflection, and family support were outside of the framework. In contrast, for the non-disclosing caregivers, the reasons for nondisclosure fit very concisely into the DD-MM framework, particularly with information assessment, recipient assessment, and (non) disclosure efficacy. This study has significant implications for development of communication skills trainings around holding family meetings in India.