Exploring Caregiving-Related Distress Among Family Caregivers of a Person with Mental Illness and the Role of Culture Among Chinese, Vietnamese and Caucasians

Purpose: A recent national study shows an alarming growth in the prevalence of mental illness (MI) in the U.S. While involvement of family caregivers in the recovery process of a person with mental illness (PMI) is a crucial factor in recovery, family caregivers (FCs) who co-reside with PMI often experience cycles of anxiety, stress, and constant worry about their own safety and that of their loved ones due to the episodic and fluctuating nature of the illness. Thus, caregivers are at higher risk for experiencing vicarious trauma (VT) which, known as secondary trauma or compassion fatigue, is the cumulative effect of interacting with people with traumatic experiences, and developing poor health/mental health due to caregiving related distress. The challenges of caregiving tend to be even greater for Asian families who face additional difficulties due to acculturation and its related structural barriers to services. Asian PMI are more likely to co-reside with family and have the lowest mental health service utilization rate, resulting in high responsibilities and challenges for FCs. Studies on the impact of caregiving for PMI are mostly with Caucasians, and little is known about Asians. To address this gap, this exploratory study examined the relationships between caregiving-related distress such as VT and cultural values on Asian FCs’ wellbeing in comparison to Caucasians.

Methods:  In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese, Vietnamese and Caucasian caregivers who co-reside with PMIs. A total of six focus groups were conducted (two per each ethnic group) with 78 participants (27 Caucasian, 30 Chinese and 21 Vietnamese) who are FCs of PMI.  Participants’ mean age was 57.04 (SD=10.23), majority was female (69.2%), and the largest caregiver groups were parents (30.8%) and siblings (26.9%).  Using a semi-structured interview format, focus groups were conducted in English, Mandarin, and Vietnamese, audio-recorded, and translated. For Chinese and Vietnamese, back-translation was implemented and cross-examinations on the English transcription were performed to raise the level of accuracy and consistency of translation/transcription across research assistants. Data analysis entailed reading transcripts, creating coding categories, coding of data by research assistants, and developing themes.

Results:  Results show that VT exists among FCs of PMI, having a negative impact on FCs’ wellbeing. Participants shared that, as a result of constant exposure to PMI, they experience intense emotions (e.g., anger, frustration, powerlessness, worries), develop health/mental health problems (e.g., depression), and have a negative impact on their personal/social lives. Culturally, while stigma was an important factor for all three groups, the reaction to it differed: Asians reported “feeling of guilt and shame” due to stigma, while Caucasians reported the need for advocacy. Findings also indicate the significant lack of services and resources available for both PMIs and caregivers.

Implications: Findings indicate need for 1) greater awareness of the detrimental effects of vicarious trauma on wellbeing of FCs, 2) an understanding of how cultural values may influence caregiver distress, and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.