Alleviating stress, loneliness, and social isolation among South Asian families managing breast cancer - PROJECT SUMMARY/ABSTRACT South Asian heritage and breast cancer are intersecting vulnerabilities for breast cancer survivors and their family caregivers due to cancer-related stigma and fears, taboos around reproductive organs, and rigid gender roles. These cultural factors could amplify the stress, social isolation, and loneliness known to affect survivors and caregivers, and can inhibit breast cancer self-management. Yet, there are no dyadic behavioral interventions to address these psychosocial needs in the South Asian cultural context. The long-term goal of this research is to develop a culturally adapted, behavioral intervention to support self-management among South Asian survivors and their caregivers. The objective here is to develop South Asian Family Approaches to Disease (SAFAD), a theoretically grounded, behavioral intervention to improve self-management by mitigating the stress, loneliness, and social isolation among South Asian survivor-caregiver dyads. We will develop SAFAD by culturally adapting our existing dyadic self-management intervention, web-SUCCEED (web-based Self-care Using Collaborative Coping EnhancEment in Diseases) which is currently being tested in a clinical trial with dyads managing chronic and serious illnesses. We propose the following specific aims: Aim 1: Using generative co-design, develop a prototype of a dyadic self-management intervention for South Asian breast cancer survivors and caregivers by culturally adapting web-SUCCEED. Aim 2: Conduct a pilot randomized trial to assess the feasibility of recruitment, retention, randomization, and measures, and assess the acceptability of randomization and intervention with 30 South Asian survivor-caregiver dyads. We will pursue these aims using an innovative co-design framework that combines the strengths of community-based participatory research and design thinking. Our multistep cultural adaptation process will include engagement with South Asian survivors and caregivers with lived experiences, and community leaders. All activities will be guided by a community advisory board comprising diverse, multilingual South Asians. The proposed research is significant because it tackles the underrepresentation of South Asians in cancer survivorship research; the lack of culturally adapted interventions for South Asians; and the need for evidence-based interventions to combat cancer-related social isolation and loneliness. The proximal expected outcome is the development of a theory-based, culturally adapted, dyadic self-management intervention for further testing. The results will have an immediate positive impact by laying the groundwork for further intervention development, and for prospective, observational studies to understand the experience of South Asians managing breast cancer, an understudied group that is at high risk for healthcare disparities.
