Aim: In India, cancer is a collective experience with the close involvement of the patient’s family and social network. Hence, this study aimed to explore Indian cancer patients’ and their families’ communication with their doctor while seeking treatment for radiation therapy.
Methods: Ninety-five participants comprising patient-family carer dyads (n=32), patients only (n=24) and family carers only (n=7) were recruited from one hospital in Mumbai, India. Semi-structured interviews explored perceived role in cancer care experiences (e.g., decision-making, treatment), diagnosis and prognosis communication (with patient/family carer and doctor), expectations and experience of their treating doctor and information needs. The interviews were audio-recorded, transcribed verbatim, and analysed thematically using the framework approach.
Results: Emergent themes included: (i) patients’ involvement in the consultation: more focussed on sharing their cancer experiences than their concerns related to medical information, lack of active participation in the consultation due to passive acceptance of the illness and/or no desire to know about the illness, increased engagement with treatment led to increased need for information; (ii) family as an integral part of cancer care: families took on the role of a primary decision-maker, were inclined to ask questions related to illness severity, treatment effectiveness, financial and logistical aspects of illness, and consistently mediated the doctor-patient interaction; and (iii) doctor’s role in communication: relied on as medical decision-maker and preferred doctors to engage in shared decision-making with families rather than patients.
Discussion and Conclusion: The study revealed Indian cancer patients played a passive role in their cancer care and treatment decision-making. Rather, the family carer played an active role in making medical decisions, communicating with doctors, and mediating the doctor-patient relationship. This study suggests the need to develop and test a triadic communication intervention which includes patient-family-doctor, to facilitate medical decision-making and information-giving.