Abstract A23: Identifying psychosocial needs of cancer survivors in Puerto Rico: A collaborative needs assessment

Background: Sparse research exists on identifying and addressing the psychosocial needs of ethnic minority and underserved cancer patients and their families. Studies conducted with majority populations suggest high rates of self-reported unmet needs. The highest needs for aid have been found in the domains of managing physical sequelae of cancer and its treatment, and promoting psychological adjustment. Those studies that have examined psychosocial needs among Hispanic populations report the highest unmet needs in the domains of spirituality and support for family/caregivers. However, studies to date have examined Hispanics as a homogenous group without regard for sub-ethnicities. This study was an exploratory attempt to identify the psychosocial needs of cancer survivors living in Puerto Rico and represents a collaborative effort between the Ponce School of Medicine and Moffitt Cancer Center, via the Outreach Core of an NCI U56 grant.

Methods: In this pilot study, five focus groups (N=50) were conducted with cancer survivors, family members, and community leaders throughout the southern portion of the Island of Puerto Rico. Data were analyzed using grounded theory. An a priori code list was created based on the interview guide and axial codes were developed during analysis to identify common themes.

Results: Primary themes among cancer survivors and family members were: unmet psychosocial needs regarding information about cancer recurrence, the role of God in relation to cancer, need for social support services for patients and families, and general fears about survivorship adjustment. Key themes identified among community leaders were need for cancer education, coordinated care services, and medical plans that met patients needs.

Conclusions: Although conclusions from such an exploratory pilot study must be reached with caution, there appears to be high need for survivorship information among Puerto Rican cancer survivors and their family members, and these needs appear somewhat similar to those identified in both the majority and general U.S. Hispanic population. Future research will focus on identifying strategies for meeting these needs, and on the development of social support programs designed to be relevant for this unique group. We also plan to compare the needs of Puerto Ricans living on the the Island with those living on the mainland in Florida to examine the role of acculturation