Evaluation of suffering and distress in breast cancer patients of Indian heritage undergoing treatment

Background Breast cancer is now the most common cancer among women in India. The rising incidence is thought to be due to increased life expectancy, urbanisation, and adoption of western lifestyles. However, little is known about the psychological impact of the disease and its treatment among women of Indian heritage living anywhere in the world, and how their culture influences their experience of cancer-related psychological concerns.Aim. To improve the knowledge about the psychological concerns among Indian heritage women with breast cancer on treatment and what helps to relieve or worsen these distresses. I also aimed to explore the cultural context within which Indian women with breast cancer living in India experience the psychological concerns, and its impact. Methods. To understand what is already known about the psychological concerns of Indian women with breast cancer living anywhere in the world, I conducted a mixed-methods systematic literature review using Centre for Reviews and Dissemination methods, and modified critical interpretive synthesis, through the lens of cultural distress theory. To explore the experience of distress/suffering as well as factors affecting them, in Indian women with breast cancer living in India with special focus on patients undergoing treatment, I conducted in-depth interviews with 20 women from Kerala undergoing treatment for breast cancer. To investigate the cultural context in which Indian women with breast cancer experience their disease and treatment I conducted five focus groups with (health care workers (2 groups)) lay public (3 groups). Both interview and focus groups were conducted in the regional language (Malayalam) and English as indicated, verbatim transcribed, translated into English, and back translated and data subjected to thematic analysis. Cultural distress and cultural task analysis theories were used to underpin the primary qualitative studies.Findings The available data from India and Canada indicate that the psychological concerns are like ‘Western’ women but are experienced within a common culture of Indian women. Family structure, religion and community appear to both protect against and cause distress in relation to an expected core role (wife, mother, family carer), and male dominance - particularly in decision making. Both qualitative studies described psychological impact relating to body image, particularly hair loss, change of family role and their need for support. Like the review findings, family and faith were recognised as the major framework providing key support but also significant stress. Both clinicians and lay groups were also concerned about the financial implications of the disease and its treatment, and issues around lack of early cancer detection. Lay people and nurses also commented that poor communication and lack of empathy from doctors aggravated distress.Conclusion Indian women with breast cancer living in India and Canada experience psychological morbidities which profoundly affect, and are affected by, their role in their family and the wider community. Culturally congruent care, including accessible communication and information, may help prevent and alleviate distress whether in India or in a migrant community. Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live. Family and faith provide a strong support structure but are also a cause of distress, as core roles and expectations are challenged by this disease of womanhood. These insights are useful for clinicians aiming to provide culturally congruent breast cancer care for Indian women anywhere in the world.

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