Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

Document Type : Research Articles


1 Department of Community Medicine, Kasturba Medical College (KMC), Manipal Academy of Higher Education (MAHE), Manipal, India.

2 Department of Demography, Faculty of Spatial Sciences, University of Groningen, Netherlands.

3 International Development Studies, Department of Human Geography and Spatial Planning, Faculty of Geosciences, Utrecht University, the Netherlands.

4 Transdisciplinary Centre for Qualitative Methods, Prasanna School of Public Health, MAHE, Manipal, India.

5 Centre for Community Oncology, KMC, MAHE, Manipal, India.

6 DYPU School of Public Health, DY Patil Deemed to be University, Nerul, Navi Mumbai, India.


Background: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. Methods: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. Results: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. Conclusion: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.


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