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Research Grants Awarded
Evaluating Support Groups for Asian American & Pacific Islander Cancer Survivors
Despite cancer as the leading cause of death for the over 12 million AAPIs, only ten studies have investigated the importance of family and spousal support for Asian American and Pacific Islander (AAPI) cancer patients, and all have identified potential cultural differences that make the provision of effective support different than mainstream programs. Among AAPIs, cancer remains highly stigmatized, and due to cultural factors, many survivors hesitate to seek support from those outside immediate family and friends. Even those who seek social support from relatives and friends still encounter difficulties in expressing their feelings or sharing their anxieties about cancer. Few support programs exist anywhere in the U.S. for AAPI cancer survivors. Therefore, further exploration of these barriers warrants study to improve the quality of life for AAPI cancer survivors. This mixed-method 3-year pilot study aims to evaluate successful programs in AAPI communities to test their strategies in other AAPI groups. HYPOTHESIS –Provision of culturally salient social support resources and services will improve the quality of life for AAPI cancer survivors and their families throughout the cancer experience. SPECIFIC AIMS –The three aims are: 1) To characterize two successful AAPI cancer support groups and identify elements that are different than mainstream programs ; 2) Identify how the unique cultural variations are addressed in these culture specific programs; and 3) Test the application of the curriculum in two new communities to evaluate the cultural fit of implementation and impact measures on the outcomes of sense of well-being and quality of life for the participants in the new groups. STUDY DESIGN –Phase 1: semi-structured interviews and observations with group leaders and participants of two existing AAPI support groups. Phase 2: use data analysis to design a curriculum that includes culturally specific strategies. Phase 3: test the application of the curriculum in two new cultural groups to evaluate its efficacy. Outcome measures will be qualitative interviews of the group leaders and participants and quantitative standardized measures of Quality of Life and Well-being. POTENTIAL OUTCOMES & BENEFITS –Study results will provide a basis upon which to apply for a larger grant to test the application of the culturally tailored support curriculum for AAPI survivors and their families in more AAPI communities, and explore additional needs for support and services
Cancer is the number one cause of death for Asian Americans and Pacific Islanders (AAPIs), yet only 10 published studies address the issues of survivorship and support services. Despite over 12 million AAPIs in the US, the quality of life and social support needs of newly diagnosed AAPI cancer patients and their families have been overlooked. Few cancer support services are available nationally to aid AAPI survivors in coping with the aftermath of the disease. AAPIs in particular face tremendous difficulties obtaining support because of cultural and linguistic barriers, and the dearth of groups and resources that are culturally salient and accessible. Therefore, we plan to conduct an exploratory qualitative study focused on identifying the unique cultural needs of AAPI cancer survivors and their immediate family members. This will be a formative study to identify the 1) meaning of cancer to patients and their families, 2) modes of coping with the cancer experience, and 3) types of support wanted and needed to positively adapt to the diagnosis, treatment and rehabilitation. The three phases of the study include: Interviews and focus groups with patients, family members and group leaders of existing AAPI support groups to identify the unique cultural variations that are expressed or attended to in existing AAPI support groups; Development of a curriculum addressing culturally specific needs of cancer patients and their families; and Testing the curriculum in two new ethnic support groups. 1)Evaluation -While there are some AAPI cancer support groups in the U.S., most actually focus on the patient and not on the social support surrounding the patient, and none have been evaluated. Through semi-structured interviews and focus groups with AAPI cancer survivors, families, and group leaders we will identify support group elements that are different from mainstream programs. 2)Curriculum Development -Working closely with local AAPI specific community organizations and using the knowledge gained from the evaluation portion of our study, we will develop a curriculum that encompasses culturally specific strategies for AAPI support groups. 3)Implementation -We will apply the culturally specific strategies of the curriculum in two new AAPI communities to test the model and evaluate its efficacy. The findings would be applicable for other groups to use to build the community’s capacity in providing outlets and services for AAPI cancer patients and survivors.