‘I don’t talk about my distress to others; I feel that I have to suffer my problems..’ Voices of Indian women with breast cancer: a qualitative interview study

Daniel, Sunitha; Venkateswaran, Chitra; Hutchinson, Ann; Johnson, Miriam J.

Abstract

Background: Breast cancer is the commonest form of cancer among women globally, including in India. The rising incidence in the developing world is thought to be due to increased life expectancy, urbanization and adoption of western lifestyles. A recent systematic review found that Indian women living in India or as immigrants in Canada experienced a range of psychological distresses both ameliorated and exacerbated by cultural issues personally, within the family, their community and in the context of faith and only two of the five qualitative studies explored the experience of women with breast cancer living in India. Distress may also affect treatment compliance.
Aim: The aim of the study was to explore the psychological distresses experienced by Indian women with breast cancer living in Kerala, South India during and after treatment and to understand better what helped to relieve or increase these distresses.
Methods: In-depth interviews were conducted with 20 consenting women undergoing treatment for breast cancer. Purposive sampling was used to obtain maximum variation in socio-demographic and clinical characteristics. Interviews were verbatim transcribed, translated into English and back translated to Malayalam to ensure that the meaning had not been lost. English data were analyzed using thematic frame work analysis and synthesized to provide a deeper understanding of the individuals’ experience.
Results: Three major themes emerged from the data. The first major theme was “far-reaching psychological distress”. This included anxiety, guilt, anger and depression in response to the disease and physical side effects of treatment and issues relating to body image, especially hair loss and sexuality. The second major theme was “getting on with life”. Women tried to make sense of the disease, by actively seeking information, the role of medical professionals, and their practical adaptations. Many found a new future and a new way to live normal. The third major theme was the “support system” strongly based on family, friends, faith and the community which affect them positively as well as negatively.
Conclusion: Psychological concerns related to disease and treatment is common in Indian women with particular emphasis on body image issues associated with hair loss. Family and faith were key support systems for almost all the women although could also be causes of distress.

Citation

Daniel, S., Venkateswaran, C., Hutchinson, A., & Johnson, M. J. (2020). ‘I don’t talk about my distress to others; I feel that I have to suffer my problems..’ Voices of Indian women with breast cancer: a qualitative interview study. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, https://doi.org/10.1007/s00520-020-05756-8

• Journal Article Type: Article
• Acceptance Date: Sep 6, 2020
• Online Publication Date: Sep 21, 2020
• Publication Date: Sep 21, 2020
• Deposit Date: Sep 9, 2020
• Publicly Available Date: Sep 23, 2020
• Journal: Supportive Care in Cancer
• Print ISSN: 0941-4355
• Electronic ISSN: 1433-7339
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1007/s00520-020-05756-8
• Keywords: Breast neoplasms; Stress; Psychological; Distress; Indian; Body image; Hair loss
• Public URL: https://hull-repository.worktribe.com/output/3585985
• Publisher URL: https://link.springer.com/article/10.1007%2Fs00520-020-05756-8