Exploring perceptions and practices of cancer care among caregivers and care recipients of breast cancer in India

Abstract

Objective: Cancer care is physically and psychologically challenging for both care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.

Methods: Participants were interviewed with the aid of a semistructured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, and coded, and themes were derived for further analysis. Informed consent from participants and ethical clearance and permission from a tertiary hospital were obtained prior to data collection.

Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress-free environment. Caregivers in particular felt that psychological caregiving meant reacting calmly to sensitive queries of nonfamily members, providing emotional support to other family members, and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision making from other family members.

Conclusions: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad.

Keywords: India; breast cancer; breast oncology; caregiver; caregiving; psychological care; qualitative study.