Objective: Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision-making and treatment outcomes in India.
Methods: This cross-sectional in-depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model.
Results: We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision-making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision-making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions.
Conclusion: The novel evidence-based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision-making. This may improve patients' access to informed, appropriate care pathways.
Keywords: India; cancer; communication; decision-making; health literacy; information; oncology.
© 2021 John Wiley & Sons Ltd.