Unacknowledged Caregivers: A Scoping Review of Research on Caregiving for Asian American Cancer Survivors

Background and Purpose: In the United States, Asian Americans are the first population to experience cancer as the leading cause of death. Once screened and diagnosed, Asian American cancer survivors often face other challenges, including the distress of adjusting to a complex American healthcare system, as well as cultural, financial, and language barriers. Caregivers for Asian American cancer survivors shoulder significant responsibilities and burdens emotionally and financially, given these barriers, yet they often encounter limited support systems. Understanding their experiences and challenges is crucial for developing targeted interventions and support services to improve the overall well-being of both caregivers and survivors. The purpose of this scoping review is to examine the scope of research on psychosocial outcomes and experiences of caregivers for Asian American cancer survivors.

Methods: The team worked closely with a librarian to identify search terms and used Covidence to manage the search and article selection. The search was conducted in four databases in March 2024, including MEDLINE, APA PsycINFO, CINAHL, and Web of Science, for studies that met the following criteria: (1) written in English; (2) original research on caregivers of Asian cancer survivors; (3) US-based. Two authors screened the articles and extracted the data independently and met to resolve conflict.

Results: We included 11 studies from 477 retrieved articles. The ethnicity group of caregivers in the included studies was diverse. Most studies examined outcomes and experiences of multiple Asian ethnicity groups (n=7). Two studies focused on Chinese American caregivers only, and two studies centered on Korean American caregivers only. The majority of studies were qualitative research (n=7). Themes of caregiving discussed were caregiving role and task (n=4), cultural differences (n=3), stress (n=2), caregiving burden (n=2), managing interpersonal relationships (n=2), meaningful acts (n=2), and support received (n= 1). Quantitative research on Asian American caregiving revealed that family communication predicted the quality of life of the survivors (n=2), and acculturation predicted more social support (n=1), less depression, and higher quality of life of caregivers (n=1).

Conclusions and Implications: This is the first review of research on cancer caregiving for Asian American population. It highlights the diverse challenges faced by caregivers for Asian American cancer survivors, emphasizing the importance of addressing cultural and systemic barriers. Qualitative research identified key themes such as caregiving roles and cultural nuances, while quantitative studies underscored the impact of family communication and acculturation on well-being. Tailored interventions and support services are urgently needed to enhance the quality of life for both caregivers and survivors. By recognizing and addressing these challenges, healthcare providers, policymakers, and researchers can improve outcomes and promote health equity within the Asian American community.