The South Asian Family Approaches to Disease (SAFAD) Study: Study Rationale, Design, and Progress

INTRODUCTION: An increasing number of South Asians (people with heritage from India, Pakistan, Nepal, Bhutan, Sri Lanka, Maldives, and Bangladesh) are managing breast cancer due to rising prevalence and decreasing mortality of breast cancer in this population both globally and in the United States. The South Asian Family Approaches to Disease (SAFAD) study aims to better understand the unmet needs of South Asian breast cancer survivors and their informal caregivers and to create a support program for South Asians managing breast cancer.
METHODS: SAFAD is an ongoing study that is led in collaboration with a community advisory board. Health care providers and South Asian breast cancer survivors and their caregivers are recruited through two strategies: a community outreach approach, and a point of care approach. Survivors and caregivers are asked to complete a survey and a semi-structured interview. Providers are asked to complete a semi-structured interview. Interviews are recorded, transcribed, and analyzed using thematic coding. Quantitative data will be analyzed and compared via t-tests and chi-squares for continuous and categorical data, respectively.
RESULTS: The community outreach recruitment approach has yielded three providers but no patients or caregivers. The point of care recruitment approach has yielded one survivor-caregiver dyad and nine survivors. Data has been collected from the dyad and two providers. The survivor has a greater fear of cancer recurrence and greater feelings of isolation compared to their caregiver. The survivor and caregiver both stated that caregiving would be very different in their country of origin, and were comfortable with and could communicate well with their care team. The providers shared observations made when treating South Asian patients, such as their reluctance to discuss sexual dysfunction and to participate in cancer screening practices.
DISCUSSION: The SAFAD study’s recruitment challenges may stem from three barriers: stem changes in methods for accrual imposed by the COVID 19 pandemic, challenges inherent in conducting dyadic research, and cultural barriers to participation in quality of life research. We plan to continue to utilize both recruitment approaches with a greater focus on the point of care approach.