THE PATIENT’S QUEST FOR INFORMATION IN NEPHROLOGY CARE: INSIGHTS FROM A RAPID ETHNOGRAPHY IN INDIA

Patients need medical information to decide which treatment modality they prefer and to be able to adhere to the chosen course of treatment. Chronic kidney disease (CKD) patients have specific information needs to help them make decisions about life-style changes to manage their disease and, when the disease progresses, kidney replacement therapy options. This study examined how kidney patients and their healthcare providers in a tertiary hospital in New Delhi navigate information gathering and provision.

A Rapid Ethnography design was used. Two investigators conducted participant observation and semi-structured interviews with nine nephrologists and twenty patients in the nephrology department of a tertiary hospital in New Delhi. Data were analyzed using conventional content analysis, with categories and codes developed inductively to describe and analyze the modes and quality of information exchange.

Three major categories were identified: “Sources of Information,” “Types of Information Exchanged,” and “Quality of Information Exchange.” Patients relied on multiple sources of information. Healthcare providers were the primary source, but some patients also consulted alternative-medicine practitioners. Patient-to-patient information exchanges in waiting areas were common, and personal experience over time contributed to self-learning. Patients also widely used the internet and social media platforms to supplement clinical advice. Clinicians sometimes supported this use. Doctors offered various types of information, including medical information such as diagnosis, prognosis, and treatment options, including dialysis modalities and transplantation. They also offered guidance on lifestyle, diet, medicine, and, sometimes, information about financial support and government schemes. However, explanations were at times brief and varied in quality. The quality was determined by doctor-related factors, patient-related factors, and systemic factors. Doctor-related factors included differences in communication style, ranging from patient-centered approaches using simple language to rushed interactions with heavy reliance on jargon. Assumptions about patient comprehension sometimes led to gaps in understanding. Patient-related factors included literacy levels, with a significant proportion of patients unable to grasp complex medical information, as well as emotional states such as anxiety that reduced comprehension. Engagement in the information search also varied: while some patients actively sought information and second opinions, many deferred decisions to clinicians without actively requesting information. Systemic factors further constrained communication. High patient loads limited consultations to only a few minutes; continuity of care was disrupted by rotating doctors; and crowded outpatient settings reduced privacy and complicated sensitive discussions.

The study demonstrates that the patient’s quest for information in the studied nephrology setting is shaped by a complex interplay of societal, cultural, professional, personal, and systemic factors. Attempts to improve the information exchange must address all these levels through a holistic approach that includes clinician and patient education and training as well as systemic changes.