Burden of care among informal caregivers of breast cancer patients in India

Background: The effects of cancer are usually shared by the caregivers therefore calling cancer a “we‐disease” or a “family illness.” Aims: A qualitative study was conducted to explore the perception and experiences of burden of care among caregivers of women with breast cancer in India. Methods: A total of 44 families were recruited of which 35 patients and 39 caregivers in‐depth interviews were held. Participants were purposively selected from different stages of the cancer, treatment types, and marital status. Required permissions and ethical clearance was obtained. Deductive approach was used to analyze the data. Results: As per previous literature some common codes emerged but, based on Indian culture some unique codes are listed here. Under psychological theme; caregivers perceived breast cancer being contagious and concept of evil eye. Most of the caregivers were preoccupied with the reason for breast cancer and daughters felt there is danger alarm‐cancer being hereditary. Caregivers belonging to nuclear family, having agriculture and livestock, having children or older adults or other sick family members experienced the most physical burden. Financial burden was common across all the socioeconomic strata but the experiences differed. All the caregivers faced a common social burden and avoided disclosing the cancer status. The reasons being, have to answer the questions of the people, children were of marriageable age, stigma, and people visit home. Conclusions: To have a better quality of life of patient as well as family members, there is need to lessen the burden felt by caregivers demonstrating use of supportive care to the family.