The Experiences and Needs of Asian Family Caregivers for Severe Mental Illness in the United States: A Qualitative Scoping Review and Implications for Practice and Programming

Background and Purpose: Severe mental illnesses (SMI), such as schizophrenia spectrum disorders, are a critical public health concern worldwide. Although Asian Americans are the fastest growing racial group in the U.S., they continue to disproportionately underutilize mental health treatments despite evidence of rising rates of SMI. Family caregivers are particularly relevant to Asian communities, with family members often playing primary roles in caregiving, frequently through more involved caring responsibilities, with literature suggesting higher levels of caregiver burden and mental health challenges compared to the general population. While prior studies emphasize the need for culturally relevant interventions to provide effective care for Asian families with SMI, there remains a paucity of literature on strategies to support and engage caregivers and family members. Given the strengths of qualitative methods to generate comprehensive and nuanced descriptions of lived experiences, the current study identified mental health needs and experiences of Asian American family caregivers for SMI through a qualitative scoping review.

Methods: A scoping review was conducted to identify qualitative studies evaluating experiences and needs of Asian caregivers supporting a family member with SMI. Five databases (PubMed, PsycINFO, ProQuest, Ovid, and Google Scholar) were searched using MeSH and PICO terms and the keywords “Asian American”, “Asian”, “severe mental illness”, “caregivers”, and “mental health”. Eligible studies met criteria if they were peer-reviewed journal articles focusing on Asian caregivers for SMI in the U.S. Within- and across-cases matrix analyses were conducted to synthesize methodological and substantive content themes within the available literature.

Results: A total of 10 studies were identified. Participants identified as Chinese, Japanese, Vietnamese, Filipinx, Korean, Taiwanese, and Lao. Non-probability sampling was utilized for all studies, with semi-structured interviews being the most used method for data collection. Most interviews were conducted in the participant's native language (i.e., Vietnamese, Korean) and were transcribed by research assistants fluent in those languages. Nine substantive themes resulted from this analysis: (1) mental health stigma, (2) an emphasis on competence and education, (3) administrative and immigration-related stressors, (4) interpersonal harmony and interconnectedness, (5) self-sacrifice through filial piety, (6) an emphasis on religion and spirituality, (7) linguistic differences, (8) pride in fulfilling caregiving responsibilities, and (9) the need for culturally relevant psychoeducation.

Conclusions and Implications: This review revealed evidence of unique needs among Asian American caregivers supporting loved ones with SMI. These culturally specific factors distinguish the experiences of Asian Americans from other racial groups and the general population, with findings underscoring the importance of developing culturally sensitive psychoeducation, stigma reduction strategies, and tailored mental health programs for Asian families impacted by SMI enhance health equity in the U.S. Qualitative methods elucidated specific needs among this population, serving as a platform for this underserved group to contextualize their experiences to best inform effective intervention development efforts. Future research will evaluate how to better support Asian American caregivers through development, evaluation, and testing of a community-engaged and culturally tailored intervention to connect caregivers with peers and other families to enhance multilingual and culturally relevant psychoeducation, resource-sharing, and stigma reduction.