Aims. Nondisclosure of cancer diagnosis is found to be associated with poor patient quality of life and high levels of distress, thereby creating disparity in patient care. Although nondisclosure is common practice in India, little is known about the experience of nondisclosure (versus disclosure) among Indian cancer patients.
Methods. Using purposive sampling techniques, Indian cancer patients who had been disclosed (n = 6) or non-disclosed (n = 4) of their cancer diagnosis were recruited. Patients participated in semi-structured interviews exploring their experiences of their illness, how they were coping, and their attitudes about truthful disclosure of a serious illness. The interviews were transcribed and analysed using Interpretative Phenomenological Analysis.
Results.Disclosed patients reported reacting to the cancer diagnosis with either a matter-of-fact acceptance or shock. They also used a range of coping strategies including social comparisons to deal with their illness. Non-disclosed patients reported feeling entrapped and desiring death as a consequence of the illness experience, and they remained passive and relied on their doctor for emotional support. Almost all the patients believed that truthful disclosure of a serious diagnosis was important and preferred.
Conclusion. Indian non-disclosed cancer patients’ intense negative experience of their illness is both novel and an important finding. The findings suggest that the overall experience of cancer for non-disclosed patients is worse than for disclosed patients, with disclosed patients using a range of coping styles while non-disclosed patients using only passive coping. This may be due to differences in the quality of patient care given to each group. In order to overcome these disparities, non-disclosed patients should be provided additional psychological support to cope with their situation. Interestingly, almost all patients preferred truthful disclosure of a serious illness, suggesting a need for a better understanding of what patients want in terms of cancer care.