What is it about?
Reports of patient and caregiver experiences about their encounters in healthcare settings and consideration of their preferences could provide valuable inputs to improve healthcare quality. But are their voices heard by researchers/health care system personnel in India? To understand this, we selected diabetes mellitus and cancer which are common chronic conditions, and systematically studied research studies conducted from year 2000 onwards in India, with predefined eligibility criteria. We then mapped gaps in the current health system and research, based on synthesis of user feedback from the included studies, related to diabetes and cancer care in India.
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Photo by National Cancer Institute on Unsplash
Why is it important?
Our study highlights gaps in current research in terms of understanding patients' and caregivers' experiences and perspectives related to care for diabetes and cancer, and health system-related challenges. Our study found an absence of robust, standardised approaches to measuring experiences and preferences. Moreover, Studies were concentrated in a few states in India, with the underrepresentation of vulnerable population groups (tribal / migrant/people with disabilities) . Compared to user experiences, very few studies focused on preferences. This points to the need for a comprehensive strategy of evaluating users’ experiences of the health system and their preferences, to inform improvements in the health system in India. The research evidence highlights challenges faced in diagnosis and cancer treatment, as well as the continuation of care for diabetes, including challenges faced in public healthcare facilities and referral systems. These issues force patients to turn from government to private facilities, seek alternative treatment, and point to India’s pressing need for health system reforms.
Perspectives
This opportunity helped me to understand the patient-centred care paradigm and the dearth of literature available in India. Qualitative studies included in the review provide rich insights into user experiences. However, these studies were limited and underrepresented. Our study points out the need to listen to patients' and caregivers experiences frequently to improve health care in India.
Sindhu Nila
As a public health physician working in secondary and health care settings, I feel that it is important to also evaluate patient experiences at such settings and also from representative samples in the community, rather than only tertiary care hospitals which were the main location for most studies on patient experiences, in our review.
Anu OOMMEN
Christian Medical College Vellore Association
Read the Original
This page is a summary of: Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review, PLoS ONE, January 2024, PLOS,
DOI: 10.1371/journal.pone.0296643.
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