Informal and Formal Support and Needs Among Samoan Survivors
|Institution:||CSU Fullerton Auxiliary Services Corporation|
Sora Tanjasiri , DrPH, MPH -
Sala Mataalii , -
|Award Cycle:||2006 (Cycle 12)||Grant #: 12AB-4100||Award: $69,682|
|Award Type:||CRC Pilot Award|
|Sociocultural, Behavioral, and Psychological Issues>Sociocultural, Behavioral, and Psychological Issues: the human side|
This is a collaboration with: 12AB-4101 -
Initial Award Abstract (2006)
Non-technical introduction to the research topics: While considerable literature exists supporting the need for formal social support programs for breast cancer survivors, only a few studies have looked at the roles that informal supporters (i.e., family and friends) play in survivor quality of life and survival. The latter, however, is of considerable relevance for ethnic/racial women from culturally collective communities, such as Samoans and other Pacific Islanders (PIs). Breast cancer is the leading cancer for Samoan women, yet there exists no studies on the relative importance of informal and formal support for their long term survival and quality of life. This study proposes to explore informal and formal support in a very ethnically close community of Samoans in Southern California. The question(s) or central hypotheses of the research: This exploratory pilot study addresses two key questions of central importance to Samoan breast cancer survivors: 1) What are the formal and informal social support needs of Samoan women diagnosed with breast cancer? 2) To what degree do informal and formal social support mechanisms fulfill these needs for current Samoan survivors? By answering these questions, we hope to not only increase the knowledge base regarding social support among survivors, but also contribute to the refinement and testing of an existing community-based social support model to measure the specific impacts on changes in quality of life among Samoan survivors. The general methodology: This pilot study uses qualitative, exploratory approaches to explore the social support needs and experiences of Samoan breast cancer survivors and their informal supporters. Based upon grounded theory, we will recruit and interview approximately 20 Samoan survivors, along with approximately 40 of their informal supports (approximately 2 per survivor). Using techniques such as theoretical sampling and constant comparisons, we hope to identify and understand the range of social support experiences among Samoan survivors. Innovative elements of the project: We believe this is the first study of its kind to explore the differing needs for, and roles of, formal and informal social support among breast cancer survivors. Furthermore, the exploration of such issues in the ethnic community of Samoans provides us an excellent opportunity to understand how such cultural values such as family connectedness and holism impact survivors use of differing social support mechanisms. Community involvement: The genesis for this study arose from questions posed by the community-based partner, the Samoan National Nurses Association, regarding the impacts of their existing social support program on survivors and their families. After attending the June 2005 CBCRP workshop, SNNA’s Executive Director (Marion Hannemann) met with CSUF’s Dr. Tanjasiri to discuss the idea of proposing a study that explores the social support needs of Samoan survivors. Throughout the entire proposal development phases (from concept paper, to bidder’s training, to now), three SNNA staff (Ms. Hannemann, Mataalii, and Tupua) have actively participated as a leading partner. To ensure that this pilot effort continues to meaningfully involve members of the general Samoan community, we have also developed a Community Advisory Board with membership reflecting the diversity of viewpoints and experiences of community leaders and cancer survivors, all of whom are Samoan and are actively involved in promoting the well being of the Samoan community.
Symposium Abstract (2007)
There are over 50,000 Samoans in California. While Samaoan and other Pacific Islander women have high rates of breast cancer incidence and mortality, there are few studies of their survivorship and social support needs after diagnosis. This 18-month pilot CRC study is a collaboration between two groups: the Samoan National Nurses Association (Sala Mataalii, Co-PI) and California State University, Fullerton (Sora Tanjasiri, Co-PI). The aim of the study is to explore the social support needs of Samoan breast cancer survivors from two groups: one who have participated in SNNA's support group program, and who have not participatedin the program. In addition, two of each survivors family members or friends (i.e., supporters) will also be invited to participate in order to understand their roles in providing social support to the survivor. Over the past year, the collaborative has undertaken the acivities: 1) convened the members of our Community Advisory Council to guide development of our methods and interview guides, 2) conducted two focus groups with community leaders to identify the social support issues to be explored with survivors, 3) finalized indepth interview guides for survivors and their supporters; 4) identified and trained three nurses from SNNA in recruitment and consent processes, qualitative interviewing skills, and conducting the qualitative interviews; 5) transcribed and translated interviews; 6) conducted data analyses using Atlas.ti software; and 7) presented preliminary results to research staff and Community Advisory Council members for feedback and discussion. Long term goals include the sharing of all data analyses with study participants and the larger community, and preparing a larger, three-year study to evaluate the effects of SNNA's support groups on the lives of Samoan survivors.