Online support for Hindi-speaking metastatic breast cancer patients

Context

Breast cancer is the most common cancer in Indian cities and the second most common in rural areas, accounting for 25-32% of all female cancers.[1] The lack of awareness, absence of diagnostic facilities and low priority given to women’s health often results in late-stage diagnosis. Women are also at higher risk for recurrence after completion of treatment, incomplete or abandoned treatment. For these reasons, the number of women suffering from metastatic breast cancer (MBC) in India is increasing and their needs go largely unattended. By developing an online support group for these patients, the Cancer Patients Aid Association (CPAA) in Mumbai aims to strengthen the social, economic, psychological and spiritual support for Indian MBC patients, especially the Hindi-only speaking community.

CPAA is a 50-year-old NGO working towards the “total management of cancer”, which includes activities such as raising awareness, early detection, covering the cost of treatment through insurance and providing holistic care for cancer patients. In 2017, CPAA was one of the 20 organisations to win a SPARC grant to develop an online community for MBC patients to learn about disease management, interact with cancer professionals and connect with other patients.

The second step was to assign the patients to a WhatsApp support group consisting of a doctor, a medical social worker, a psychologist from Adveka Foundation and other MBC patients. The psychologist leading the group suggested activities and facilitated conversations. In the WhatsApp group, solutions to frequently experienced problems were discussed amongst patients under the guidance of a qualified doctor. This is helpful for patients who find that they cannot share their fears and personal feelings with family members, parents or husbands. Based on piloting these online support groups, CPAA had enough insights on the needs of patients and experience on facilitating their conversations to design an app for MBC patients.

During the WhatsApp support groups, the CPAA team found that there was only a 50% response rate to direct motivational questions (for instance “what is something you did today that made you feel happy?”). Furthermore, despite the use of aliases, it became clear that full anonymity was necessary for patients to feel comfortable sharing. For this reason, among others, they decided that WhatsApp was not optimal for implementing the project on a larger scale.