Informal and Formal Support and Needs Among Samoan Survivors

Institution: Samoan National Nurses Association
Investigator(s): Sala Mataalii,  - Sora Tanjasiri, DrPH, MPH -
Award Cycle: 2006 (Cycle 12) Grant #: 12AB-4101 Award: $125,039
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 12AB-4100 -

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 cause of 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.


Final Report (2008)

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. Breast cancer is the leading cause of 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 pilot study involved a collaboration between the Samoan National Nurses Association and California State University, Fullerton to explore informal and formal support among Samoan breast cancer survivors in Southern California. There were 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? The specific aims included: 1) Develop an appropriate interview methodology for exploring social support needs and experiences; 2) Develop a family/friend component to this methodology to explore their involvement as informal supporters for the survivor; 3) Conduct purposive sampling and interviewing of Samoan breast cancer survivors; 4) Recruit and interview at least two informal supporters regarding their provision of support and care; 5) Identify the emergent categories and themes related to women’s social support needs and experiences; 6) Share the findings with participating survivors and community members to gather input on how to refine an existing community-based social support program.

This pilot study used qualitative, exploratory approaches to explore the social support needs and experiences of Samoan breast cancer survivors and their informal supporters. We recruited and interviewed 20 Samoan survivors along with 40 of their informal supports (approximately 2 per survivor). Over the past year, we successfully completed all aims of the study, with the major study accomplishments including: regular convenings of the Community Advisory Board; development and translation of a survivor and supporter interview guides and written questionnaires (including IRB approval); training of 3 bilingual Samoan interviewers to implement all survivor and supporter interviews; successful recruitment of 20 survivors and 40 supporters; data analyses using grounded theory regarding survivor and supporter social support needs; and presentation of results to the community at a final community presentation. Study staff will continue to prepare data dissemination products to professional conferences and journals in the subsequent months.