Exploring caregiving-related experiences among Chinese American and European American family caregivers of persons with mental illness

Abstract

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

Keywords

Mental illnesses are medical conditions that disrupt individuals' cognitive, psychological, and/or behavioral functioning. In a given year, one in four adults in the United States (about 57.7 million Americans) experiences some form of mental health disorder, and one in 17 individuals lives with a serious mental illness (e.g., schizophrenia, major depression, or bipolar disorder) that impairs cognitive, emotional, or behavioral functioning (National Alliance on Mental Illness [NAMI], n.d.; The U.S. Substance Abuse and Mental Health Services Administration [SAMHSA], 2014). While mental illness is treatable and full recovery is often possible (Kaye, 2011), mental illness has been recognized as a major source of disability (Bond & Kukla, 2011), that often results in an individual's reliance on family for care, either temporarily or permanently (MacNeil & Jaggers, 2013; Mueser & Cook, 2014).

The deinstitutionalization movement, initiated in the 1960s, resulted in the transition of the mental health care system from in-patient psychiatric care to community-based mental health organizations (Hinshaw, 2007). Consequently, caregiving responsibilities fall on the family members of the person suffering from mental illness, and approximately one third to two thirds of adults diagnosed with a major mental illness live with or receive primary care from their family members (Casstevens, 2012). Regardless of ethnic or cultural background, family caregivers (FCs) of people with mental illnesses (PMI) are often thrust into caregiving roles, with the extent of necessary care dependent upon how the mental illness develops throughout a person's life. Mental illness is rarely diagnosable at birth; instead, it is usually diagnosed later in adolescence or young adulthood (e.g., 50% of all lifetime cases of mental illness begin by age 14 and 75% by age 24; NAMI, 2015). Thus, family members of PMI must work to make sense of their new reality of living with PMI, which often leaves the family with feelings of confusion and despair.

Existing literature on FCs within European-American families presents the experience as having a negative effect on overall quality of life (Crowe & Brinkley, 2015; McCann, Bamberg & McCann, 2015; SAMHSA, 2012) and causing psychological problems as well as disrupted family functioning (Crowe & Lyness, 2014; Mueser & Cook, 2014; Wyder & Bland, 2014). Moreover, caregivers who reside in the same house as PMI may experience a higher level of daily burden due to the barrage of emotions and stress that come with the ongoing responsibilities, which include maintaining finances, providing shelter, and ensuring the overall well-being of the PMI (Hanzawa, et al., 2013).

In addition to caregiving-related distress, another source of distress for FCs of PMI is negative stereotyping of and discrimination against PMI and their family members. Struening et al. (2001) found that between 40% and 79% of 461 family members of individuals diagnosed with serious mental illnesses reported feeling devalued by other members of society. Hinshaw (2007) noted that family members tend to internalize this sense of devaluation, which is reflected in feelings of guilt or self-blame related to the relative's illness, a phenomenon referred to as affiliate stigma. Such stigmatization is recognized as a source of distress for caregivers that may reduce access to social support, resources, and opportunities. This, in turn, leads to social isolation and heightened distress in the caregiving process (Mak & Cheung, 2012).

These caregiving-related challenges and distress tend to be even greater among ethnic Asian families living in the United States, of which ethnic Chinese comprise the largest subgroup and are mainly immigrants (US Census, 2012). These families face additional difficulties due to cultural values (e.g., stigma and shame regarding mental illness), limited English proficiency, and a lack of culturally competent resources (Han, Cao, & Anton, 2015; Lee et al., 2009; Mak & Cheung, 2012). Additionally, studies show that Asian-Americans have a high prevalence of mental health problems (Kim, Park, Storr, Tran, & Juon, 2015; Yang et al., 2013) and a higher rate of co-residency with people suffering from mental illness (Snowden, 2007). This co-residency is deeply rooted in Asian cultural values of family and collectivism, and, correspondingly, the responsibility of caregiving is perceived as a duty and obligation (Lee et al., 2009).

These compounding contextual and cultural factors may result in increased responsibilities for Chinese Americans, which may consequently contribute to substantial caregiving challenges. In fact, a growing number of studies conducted with caregivers of PMIs living in Asian countries such as China, Hong Kong, and Taiwan demonstrate that the Chinese cultural emphasis on interpersonal harmony increases caregivers' subjective burden and stress (Chien, Chan & Morrisey, 2007; Wong, Lam, Chan, & Chan, 2012; Zeng, Zhou, & Lin, 2017). Nevertheless, few studies have examined the cultural contexts of the caregiving experiences of Chinese FCs living in the United States.

While stigma related to mental illness exists across various cultures, such stigma is believed to be greater for Asian FCs. Indeed, Chinese respondents tend to endorse more negative stereotypes of and social taboos related to PMI (Chen, Lai, & Yang, 2013). Further, Chinese culture tends to emphasize the social consequences of mental illness, which may lead Chinese people to perceive a mentally ill relative as a “bad seed” and disgrace to the family, resulting in an exacerbation of the stigma (Chen et al., 2013; Chu & Sue, 2011; Lee et al., 2009). An exploratory study by Hsu et al. (2008) comparing the stigma of depression among Chinese Americans and European Americans found that stigma was significantly greater among Chinese Americans than European Americans. Further, greater stigma among Chinese Americans was related to heightened fear, shame, and cognitive distortion, which may adversely affect their mental health.

Moreover, compared to Western cultures, a Chinese individual's sense of self is embedded in social relationships with others, especially within the family. An individual will go to great lengths to maintain harmony and function within the family because the family is perceived as the “greater self” (da wo in Chinese). Confucian thought in particular mediates the way in which mental illness is experienced, through its mores of appropriate behaviors within specific roles. Guilt and shame ensue when one perceives a violation of a moral order or failure to fulfill filial duties and obligations. Any deviation of behavior from the Chinese cultural norm creates interpersonal distress; the principal source of stress for Chinese people (Hsiao, Klimidis, Minas, & Tan, 2005). Thus, in Chinese culture, based on collectivism and familism, an individual is obligated to do whatever it takes to maintain a well-functioning family (Lee et al., 2009). Therefore, Chinese FCs are likely to be involved in helping their mentally ill family members in the treatment process and in accompanying the PMI for clinical visits.

As shown above, caregiving-related distress and its influence on the well-being of European American FCs have been studied comprehensively, as has the importance of family values in Chinese culture. However, there is limited information available on Chinese-American FCs. Even with European American FCs, little is known about how they perceive caregiving beyond its negative effects and how their experiences can be different (or similar) to those of their Chinese counterparts. Understanding the influence of culture among FCs of PMI and in FCs' perceptions of their caregiving experiences is critical because culture shapes the experience of suffering, as people learn how to respond to stress and act based on their social and cultural contexts. Therefore, depending on the culture, a family may feel more or less responsible for caring for its ill family members, hold different views regarding caregiving roles, and cope with caregiving-related distress in different ways. However, little research has been conducted on how caregivers from specific cultures experience caregiving-related distress. Particularly, existing studies have tended to focus primarily on European American FCs, leaving a significant gap in understanding how cultural factors shape caregiver attitudes, values, behaviors, and perceived caregiving-related distress.

To address this gap, using an exploratory, phenomenological approach, we examined the experience of family caregiver distress and the influence of cultural values on caregiving in European American and Chinese-American FCs. More specifically, this study sought to answer the following overarching research questions: (1) How do family caregivers of persons with mental illness experience caregiving-related distress?; and (2) How does the experience of caregiving-related distress differ by ethnicity based on culture? In this study, a family caregiver is defined as a family member who acts as a primary caregiver, providing various types of support and care (e.g., physical, financial, emotional, and/or medical) to a loved one with mental illness (PMI).

Method

Research design and samples

Using an exploratory, phenomenological approach this qualitative study sought to: (a) understand how FCs of PMI describe their experiences of caregiving-related distress; and (b) explore the influence of cultural values on caregiving-related distress. By utilizing a combination of convenience and snowball sampling methods, in collaboration with NAMI Santa Clara County, California, we recruited 57 FCs (30 Chinese American and 27 European American) of PMI who met the following two study participation criteria: prospective participants must be: 1) a primary contact person for a PMI; and 2) an adult (over age 18) family member who either lives with or has close contact (e.g., having frequent and routine contacts) with the PMI.

The mean age of the FCs was 57.34 years, ranging from 33 to 78 (SD = 9.09) years of age. More than half were females (52.6%, n = 30), and the majority of the participants were married (70.2%, n = 40) and held a bachelor's degree or higher (80.7%, n = 46). Most of the FCs had parent-child relationships with PMI (70.2%, n = 40). More detailed demographic information about participants in each group was presented in Table 1. It is important to note that as shown in Table 1, except for material status, members of the two participating ethnic groups were not different from each other in terms demographic characteristics such as gender, age, educational level, and the relationship to PMI.

Table 1.

Focus group participants demographic characteristics.

	European American (n = 27)		Chinese American (n = 30)
	57.26 (SD = 8.11) [range: 34–73]		57.41 (SD = 10.06) [range: 33–78]
Age	n	%	n	%
Gender
Male	8	29.6	19	63.3
Female	19	70.4	11	36.7
US Born
Yes	27	100	1	3.3
If not^a, average of years in the US	–		30.56 (SD=7.14) [range: 20–46 yrs]
Education level
High school or GED completed	4	14.8	1	3.3
Associate's Degree/ Vocational Training	4	14.8	2	6.7
Bachelor's Degree	11	40.7	20	66.7
Master's Degree and higher	8	29.6	7	23.3
Marital status*
Single	1	3.7	1	3.4
Married	16	59.3	24	82.7
Widowed	0	0.0	2	6.9
Divorced	10	37.0	2	6.9
Relationship to PMI ^b
Sibling	2	7.4	1	3.7
Child	10	37.0	9	33.3
Parent	13	48.1	8	29.6
Spouse	1	3.7	6	22.2
Relative (e.g., uncle, niece)	1	3.7	3	11.1
Diagnosis of PMI ^b,c
Depression (major, severe, depression)	2	7.4	7	26.9
Schizoaffective/schizophrenia	16	59.3	10	38.5
Bipolar	7	25.9	6	23.1
Other mental illness (e.g., personality disorder, ADHD etc.)	2	7.4	3	11.5

Note: *Group difference at p<.05 significant level based on a Chi-Squared test;

Out of 30 Chinese participants, 29 reported that there were not born in America. But when asked the year of migration, only 16 (55.2%) reported the year of migration;

Due to missing data, frequencies do not always total the total sample and the difference to the total sample size per group indicates missing value. Percentages are calculated after missing data is excluded;

Please note that we asked the participants to check their family's member's primary diagnosis.

Data collection procedure and instruments

The study proposal was approved by the University's Institutional Review Board (IRB). Further, all of the research team members including research assistants completed a Collaborative Institutional Training Initiative (CITI) Training Course on the Protection of Human Subjects to ensure that the rights, confidentiality, and safety of all participants were maintained throughout the research process.

Four focus group interviews (two per ethnic group) were conducted with Chinese and European American FCs of PMI, with a similar number of participants (e.g., about 14–15) in each group. Each focus group was held for about two hours on average at a location that was familiar to the participants, such as NAMI SCC office or the Chinese Church where the NAMI support groups are typically held. The moderator used a semi-structured interview format to facilitate the discussion and maintain consistency throughout all the focus groups. For the Chinese FCs, both focus groups were conducted in Mandarin, the preferred language among the participants who were first generation Chinese immigrants. Two bilingual research assistants who are fluent in both Mandarin and English conducted the focus groups. For the European American groups, one research assistant facilitated the focus groups.

The following questions were explored during focus groups: 1) “How has caregiving affected your own health? How about your emotional/psychological well-being? What changes have you noticed in your health and emotional/psychological well-being?”; and 2) “We want to learn more about how one's cultural background influences the caregiving experience. Please tell us how you think your cultural background influences your thoughts and experiences about mental illness and about caregiving.”

In the context of these two overarching questions, we facilitated discussions amongst participants to investigate caregiving-related experiences, impact of caregiving on their lives, views on their roles as caregivers, and views on mental illness. Rather than approaching the question of cultural influences on caregiving with a preconceived framework, we asked participants to reflect on their own cultural backgrounds to consider how cultural factors might influence the totality of their caregiving experience.

Credibility, verification, and analysis of data

To ensure credibility and verification of the qualitative data, the focus group interviews were recorded with permission from the participants and transcribed verbatim by the research assistants who facilitated the focus groups. The Chinese transcriptions were translated from Chinese to English by one research assistant and back translated by the other. The English transcriptions for the Chinese groups were subsequently cross-checked by these two research assistants to raise the level of accuracy and consistency of translation. When any discrepancies in word choices used in translation arose, the research team discussed them and reached consensus on what would be culturally appropriate given the context.

Qualitative analysis involved an iterative process of reading and rereading interview transcripts to identify themes. Using Luborsky's (1994) thematic analysis approach, the authors read the transcripts to identify overarching themes and subthemes under caregiving challenges and the role of cultural factors (e.g., the role that cultural factors might play in creating and/or dealing with these challenges). Subsequently, the two lead authors independently read all of the transcripts and coded the data using the themes and subthemes developed in the first round. Of 160 coded pieces of text, there was 94% agreement between the two coders. For the remaining 6%, discrepancies in coding were resolved through discussion and consensus between the coders.

Results

Thematic analysis yielded three main themes and corresponding subthemes. Table 2 provides a schematic depiction of the themes extracted from the data, along with frequency data for comments in each theme. For the first research question, the focus groups revealed the following two themes: (1a) FCs' caregiving-related challenges included experiences of intense emotions, negative effects on FCs' mental health, negative effects of caregiving on FCs' social and family lives, and social stigma; and (1b) FCs expressed feeling hope for the future recovery and independence of the PMI in their families. For the second research question, distinctive cultural variations were found in FCs' experiences of and responses to caregiving-related distress (e.g., overprotectiveness among Chinese FCs and advocacy among European American FCs) through thematic analysis. The following section contains a description of each theme and supporting statements through the use of verbatim quotes. In addition to the themes described below, European American and Chinese focus group participants unanimously identified PMI's denial of illness and noncompliance with treatment as the primary sources of challenge to FCs.

Table 2.

Research questions, main themes, and sub-themes based on the thematic analysis.

Research question 1: How do family caregivers of persons with mental illness perceive caregiving related distress?		Frequency of comments¹
Main themes	Sub-themes	European American	Chinese American
Caregiving-related challenges	Negative impact on caregiver's mental health	12	14
	Experience of intense emotion	26	11
	Negative impact on social relations and family dynamics	10	16
	Social stigma attached to mental illness	12	12
Hope for recovery and Independence of PMI	Hope for recovery and independence	8	9

Research Question 2: How do experience of caregiving-related distress differ by ethnicity?		Frequency of comments¹
Main themes	Sub-themes	European American	Chinese American
Experience among FCs of PMI by ethnicity	Chinese cultural factors: Shame, lack of resources/understanding about MI, and over-protectiveness	2	9
Experience among FCs of PMI by ethnicity	European American cultural factors: advocacy and team work	16	0

Note: ¹In counting the number of coded themes, we counted each theme only once per participant. There were a total of 160 coded comments in relation to the study themes.

Caregiving-related distress among FCs of PMI

Experiences of intense emotions

Participants in all focus groups shared intense feelings of anger and frustration, reportedly as a direct result of constant exposure to the PMI's behaviors. A European American FC shared:

I felt angry at first… when your loved one becomes irrational, you're trying to talk… and there's nothing rational coming out of the other person, and it just made me very angry… how could he not see things?

European American FCs also used the phrase “rollercoaster” when describing their emotional experience, a mixture of both positive (up) and negative (down) emotions. For example, one European American participant shared:

Now I'm at the point where I just realize it's going to be a roller coaster. There's going to be ups; there's going to be down; there's going to be times we get off the roller coaster; there's going to be times we get back on.

Another intense emotion revealed was the feeling of hopelessness accompanied by powerlessness, helplessness, and a sense of loss. A Chinese participant described this feeling:

A lot of times we will feel a sense of powerlessness. In daily living, there is nowhere to gain strength from. It feels that our whole life just stops and does not move forward… like there is no way to keep moving forward.

Negative effects on mental health

In both Chinese and European American groups, FCs shared that they either developed mental health issues, such as depression or post-traumatic stress disorder (PTSD), or at least felt as if they had due to repeated exposure to the PMI's suffering. One European American FC summarized this feeling:

We've been to so many emergency room[s]; we've had the police over, and ambulances, and we've sat in ERs; and we've had to deal with suicide attempts and psychotic outbursts… over time, I have a tendency towards a little depression and anxiety and it's worsened… I've had some traumatic stress responses from those experiences because there's a chronic sense of anxiety, of arousal, you know, of worry.

Similarly, Chinese FCs mentioned seeing a psychologist themselves or wanting to access these services due to their own deteriorating mental health. For example, one Chinese FC said: “I've been wanting to find a psychologist…. I've been thinking about it for at least five or six years. I am afraid that I may fall apart and break down at any time.”

Negative effects on social relations and family dynamics

Participants from both groups described the negative effects of caregiving on their social and professional lives. One of the main points from both groups was how the PMI's behaviors and dislike of social situations had prevented the entire family from attending social functions. One Chinese FC noted:

Your social life becomes nonexistent. For us there is no more. In the past, people would come over every week… but since she needs to have peace and quiet time, for about a year, no one has come over to our home.

FCs also described the PMI's disruption of family dynamics. One European American FC talked about the challenge of staying together as a family due to the “…amount of pressure [dealing with mental illness] puts upon a family and the type of resources that it can strip away from a family, monetarily, emotionally, spiritually.” A Chinese FC also revealed the negative effect on family dynamics: “I frequently get angry at my wife and young daughter. I yell at them… I cannot control myself [due to stress caused by caring for the family member who is ill].”

Hope for recovery and independence of PMI

Despite the challenges and distresses related to caregiving, throughout the focus groups there emerged a theme of hope. One Chinese FC said: “I feel that hope is important… it's about their [PMI] own sense of hope in daily life.” This sense of hope was implied various times throughout the discussions as Chinese FCs talked about the situation's improvement over time. One Chinese FC said: “At first it was pretty serious, but now, I feel that she has recovered to about 90%,” while another shared: “When we see them have some sort of improvement, or seem a little happier, then we see some light again. Then, it feels all worth it.” European American FCs also shared this view, saying: “It's extremely exhausting, but he's almost there; so, I'm excited”; and “Well, actually, making progress…now the smile comes through the eyes.”

Along with hope for recovery, FCs from both groups also shared their hopes for the independence of the PMI. For example, a European American FC offered:

He is wanting to try and figure out how he's going to live on his own. I mean that's one of the things he was talking about tonight: ‘Mom, I don't know if I’m ever going to be able to live on my own,’ and I said, ‘Yes you are; we're working towards that, and we don't have a timeline.’

Chinese FCs shared similar hopes for independence for their PMI, stating, for example: “We always wish for them to go to work, to be independent and be able to take care of themselves”; and “I always think one day if I die, what's going to happen? So, you have to help him be independent.”

Social stigma attached to mental illness

FCs expressed an encompassing theme of stigma related to mental illness. For example, one Chinese FC noted (a sentiment shared by multiple participants):

I think in the Chinese culture, this is very difficult because, from the time we were little until now, we always called people ‘shen jing bing’ [crazy person]… In American culture it seems like it's easier to be open about it, but in Chinese culture, it's not as open and more taboo.

Another Chinese FC talked about the consequences of stigmatization:

[Due to stigma] when a problem [such as mental illness] arises in the family, they may not go get it checked out early. They may wait until it is very serious and to the point where there is nothing that can be done anymore before they realize what the actual problem is.

Although some Chinese FCs perceived that mental illness is less stigmatized in American culture, European American participants alluded to the stigma attached to mental illness by pointing to the lack of stigma attached to other illnesses. One European American FC noted that her mother had no trouble talking about her diabetes, but “she won't share or disclose her [bipolar disorder]”. Another European American FC summarized it by saying: “Mental illness is so looked down on and stigmatized… I don't want people to be afraid of my son.” Another European American participant concurred, saying: “People do not want to tell others about their family members with mental illness.”

Difference in the caregiving experience by ethnicity

While the results indicate many common issues for the Chinese and European American groups, thematic analysis revealed some culturally and ethnically distinctive themes related to caregiving. A key theme identified in the Chinese group is the experience of conflicting feelings; participants alternated between overprotectiveness (loving their children “too much” as said by the Chinese FCs) and wanting to build their children's independence. One FC stated: “My counselor said that Chinese people give their children too much. American people are having their children find their own way after they are 18.” Another noted: “Our counselor told me that my son, who is already in his early 30s… he said that I shouldn't allow him to live at home because it was too comfortable.” Another FC said:

We love them too much. We do everything for them: cook their meals, prepare everything for them. Are we spoiling them? … I feel that it can't be good to take care of him too much. I don't know what to do.

Similarly, others shared difficulty in trying to “grasp the right degree” and “to find the balance”.

Several Chinese FCs also shared their opinions about the Chinese culture's tendency toward being more conservative and less open to talking about mental illness. Participants remarked: “In American culture it seems easier to talk about it, but in Chinese culture it is not as open and more taboo”; and “Chinese people see [mental illness] as more seriously shameful.” In addition, Chinese FCs highlighted a lack of resources (e.g., Chinese-speaking mental health professionals) as being the greatest contributor to the unwillingness to seek help among Chinese people with mental illness. One Chinese FC explained:

My daughter, she was seeing a white therapist for months and did not tell the therapist anything. Later on [after searching for a while], when she found a Chinese therapist… she began to talk to her. I feel like ‘fit’ is very important.

This was supported by others who said: “Just like with my daughter's case… well of course a European American is well-trained, a very good doctor, but she just wasn't willing to talk to them,” and “In our case, even though we have no difficulty speaking English, I still prefer to find a Chinese person, but [it's] hard.” In addition to a lack of resources, Chinese FCs mentioned having difficulty with their extended families due to their lack of understanding about mental illness. FCs mentioned their experiences with other family members who denied the existence of mental illness and instead blamed the PMI's problems on “problems with… personality, like having a poor personality.”

One specific theme identified exclusively by European American FCs was that they viewed themselves as advocates in addition to caregivers. As advocates, the FCs have high awareness of and knowledge about the different services offered in the community, different treatment models, and policies that affect PMI. The majority of participants directly used the term “advocate” to describe their relationships with the PMI. FCs noted that their advocacy was intended “to prevent her from ending up in jail or the hospital… to lose her Section 8 housing” and “to get her IEP services in the school… to get services: medical, SSI, navigate through the county system.” Moreover, the European American FCs described their experiences as a team effort. For example, one FC mentioned: “I'm there to help; I go if he wants me to, I don't if he doesn't want to, but we're a team.” Additionally, another stated: “I really like that team connotation… The team is great because you can expand the team, where the family tends to be sort of what it is.” Furthermore, the European American FCs knew about and utilized many community resources and demonstrated knowledge about policies (e.g., Kendra's Law and the Lanterman Act) that affect their loved ones and family members.

Discussion

The purpose of this study was to explore caregiving-related distress in FCs of PMI and the role cultural factors play in the experiences of caregiving among Chinese and European American FCs. The study found that caregiving-related distress exists in FCs of PMI and has a negative effect on FCs' well-being. Our findings support previous research (Crowe & Brinkley, 2015; MacNeil & Jaggers, 2013; McCann et al. 2015; SAMSHA, 2012) in that FCs from both groups reported feeling intense emotions, especially anger, frustration, and high levels of stress, leading them to feel as though they were developing anxiety, depression, and/or PTSD. FCs further pointed out the inability to maintain relationships with others as well as disrupted family functioning, as previous studies have found (Crowe & Lyness, 2014; Mueser & Cook, 2014; Wyder & Bland, 2014). Consistent with Cummings and MacNeil (2008), however, both Chinese and European American FCs also reported positive feelings of caring and hope for recovery.

Findings from this study explicate the role culture plays in influencing experiences of caregiving. The European American FCs viewed themselves as advocates for PMI and emphasized teamwork between FCs and PMI. In contrast, Chinese American FCs emphasized the importance of family obligation. While the two terms, “team” among European American FCs and “family” among Chinese American FCs, both seem to describe the involvement of FCs in the PMI's recovery process, the distinction between the terms can also be indicative of cultural differences, as European American FCs involved themselves in the recovery process when asked to do so by PMI, whereas Chinese American FCs seemed to engage in the process out of obligation. In other words, for European American FCs, it appears that involvement with PMI was done not out of filial piety per se but rather more out of a reaction to a plea for help from a loved one, thus making involvement more on an individual-to-individual, “equal” footing. In fact, one cultural theme that emerged exclusively from the Chinese group is “having too much love” for the family member with mental illnesses and attempting to balance this sense of protectiveness with encouragement of the PMI to develop a sense of independence. In Chinese culture, the sense of self is identified in social relationships with others, especially within the family, which gives FCs an added sense of obligation. This sense of responsibility sometimes can conflict with the Western value of individuality. Many Chinese American FCs in this study discussed the inner conflict they feel and the way this conflict can exacerbate feelings of guilt, anxiety, stress, and sadness when they see their loved ones suffering, thus deepening the effects of caregiving distress.

In alignment with previous studies, stigma was identified as an important factor that can intensify the effects of caregiving distress on the well-being of both Chinese and European American FCs (Hinshaw, 2007; Mak & Cheung, 2012). The beliefs, values, and behaviors tend to reflect social norms (explicit and implicit) that often differ along socio-economic lines; mental illness, however, is generally stigmatized across the socioeconomic spectrum (Kondrat & Teater, 2009). In this study, stigma was experienced in both groups, consistent with research that indicates that mental illness is stigmatized across all cultures (Pescosolido, 2013). However, although both groups shared similar degrees of stigma and difficulty in talking about mental illness, Chinese American FCs seemed to share the view that European Americans attach less stigma to mental illness than do Chinese people. Indeed, several FCs shared the opinion that, compared to American culture, Chinese culture is more conservative and less open to talking about mental illness. Furthermore, Chinese American FCs also appeared to suffer from “feelings of shame” and a lack of support and understanding from relatives possessing insufficient knowledge about mental illness. Because the extended family and ethnic community play critical roles in networking and support among Chinese people, saving face and preserving the public appearance of the family in the community is extremely important (Chen et al., 2013; Chu & Sue, 2011; Lee et al., 2009).

An additional finding is the barrier to seeking services reported by Chinese American FCs. In comparison to the European American FCs, who were highly aware of and utilize multiple services available to them, Chinese American FCs did not mention any services other than NAMI/NAMI affiliated services (e.g., support group, peer group, family education, etc.), and reported unwillingness to receive services from any ethnicity other than their own, limiting the accessibility to mental health services. This finding is of particular interest to us, given that there are local mental health services and resources available to Chinese PMIs through the county and community-based mental health agencies (Santa Clara County Behavioral Health Services, 2017). This perceived barrier to utilization of services seems to attest the existing scarcity of Chinese bilingual and bicultural mental health professionals to whom they feel more “connected” and with whom they share cultural values and beliefs regarding MI and child rearing. Also, mental health providers need to implement more proactive outreach and advertisement strategies to educate and inform about resources available to Chinese community to address the unmet need.

Without accessing services, a PMI's condition can potentially worsen, which can cause higher levels of stress, concerns, and other emotions among Chinese American FCs. The findings suggest that the immigrant status of Chinese caregivers seems to have intensified both their sense of obligation to protect their ill family members and their fear of the members getting into trouble outside the home; this may reflect a sense of heightened insecurity in a foreign land. As an earlier study noted (Chen et al., 2013), Chinese FCs encounter further challenges related to unfamiliarity with the system, reduced access to services, limited social support, and language barriers. These issues can make it more difficult for caregivers to negotiate the environment on behalf of their ill relatives, thus exacerbating their fears and worries.

Limitations of the current study

The current findings need to be interpreted with caution due to several limitations. Firstly, it is limited to only Chinese immigrants/American and European American FCs. It would be important to conduct similar studies with other ethnic groups. Further, this study examined specific subgroups of the Chinese population, focusing on Chinese participants whose primary language was Mandarin. Future work should examine whether there are subgroup differences within each ethnic group that influence the perception of caregiving and related distresses. In this way, knowledge of cultural variations in caregiving-related experiences and distress may be gleaned. Secondly, due to a non-probability sampling and the small sample size, the findings are not generalizable. Further, participants were recruited primarily from the NAMI support groups, limiting generalizability. In addition, the qualitative nature of the current study design did not provide a direct assessment of the extent of differences in caregiving distress between the two groups. Future research with a large-scale study design is needed to directly assess the differences and similarities of caregiving-related distress between these two groups. Lastly, given some diversity amongst FCs in each ethnic group in terms of demographic characteristics such as education level, gender, age, and marital status, it will be worthwhile for future study to investigate how these demographic contextual factors may contribute to the perceived caregiving experience and related distress.

Implications for mental health care practice

Despite its limitations, this study offers several important implications for mental health care practice. By recognizing that all FCs are at risk for anxiety and emotional overload, mental health professionals should assess PMI as well as FCs, thus ensuring that all family members receive services. In addition, professionals should focus on providing respite services or building community health care centers for the PMI. This can free some of the FCs' time, lessen their responsibilities, and help them maintain their professional and social lives. Further, as shown in this study, there was a theme of hope and a view of the PMI in a positive, strength-based manner. Such positivity in caregiving is important, as it can serve as a protective factor in moderating the negative effects of any distresses related to caregiving on FCs' emotional and psychological well-being. Thus, based on a family-focused approach that helps improve family relationships, mental health care professionals may emphasize and encourage FCs to take a proactive attitude with PMI, seeking out services together, attending support groups, and becoming more educated on issues of mental illness.

This study also highlights the importance of cultural values, attitudes, and social structures in determining how FCs experience providing care for a family member with mental illness. For example, families of Asian ethnic groups, such as the Chinese FCs in this study, may experience a heightened sense of obligation to care for family members due to Confucian values that emphasize familism and filial piety. By recognizing the effects that these cultural values may have on the well-being of FCs, mental health professionals can adjust their treatment methods and communication styles accordingly. For example, for professionals working with Chinese FCs and PMIs, it would be helpful to know that caregiving practices of Chinese FCs who hold strong sense of obligation to their family members may appear to be over-protective to some professionals who strongly value a sense of independence and individuality. However, the adherence to these values can vary depending on the level of acculturation and generation, and sometimes counter-cultural strategies (e.g. reducing over-protection, increasing independence) might be appropriate to recommend especially if there are conflicts related to how caregiving is approached in the family. As Chinese FCs discussed in this study, their concerns about being overprotective may create internal conflict and stress that can exacerbate feelings of guilt and stress and deepen the impact of caregiving distress. Thus, it is important for professionals to understand the cultural values embraced by PMI and the family, to identify the individual and family's goals and/or conflicts that arise in the family, to establish a therapeutic alliance with PMI and family, and to encourage collaboration between PMI and FCs to promote the well-being of both parties and participation in self-care activities that are relevant to PMI and FCs. A greater understanding of these cultural differences will help mental health professionals to respond respectfully and effectively in a way that affirms, recognizes, and values every individual within his or her cultural context.

Footnotes

Acknowledgements

We would like to express our heartfelt appreciation to the National Alliance on Mental Illness (NAMI) Santa Clara County and all participants who participated in the focus groups for their support, contribution, and collaboration. Especially we want to acknowledge the following partners for their dedication, support, and partnership: Kathy Forward and Jen Hong. Lastly, not the least, we would like to thank to our research assistants, Dawei Hong and Mariah Lyons.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Silberman Faculty Development Grant in the New York Trust Fund provided funding for this research (Grant number: P13‐000547).

Meekyung Han, PhD. is a professor and a co-coordinator for the Institute for Community-Partnered Research in the School of Social Work at San José State University. Dr. Han’s research includes mental health services for Asian American and other ethnic populations. Her published works focus on issues related to mental health and general well-being and enhancing culturally sensitive and competent practice with ethnic minority populations with specific emphasis on Asian Americans. She was the Principal Investigator of the research project from the Silberman Faculty Development Grant that funded the current study.

Sadhna Diwan, PhD, is the Director of the Center for Healthy Aging in Multicultural Populations (CHAMP) and a professor in the School of Social Work at San José State University. Dr. Diwan’s research focuses on understanding the use of home and community based services among older adults, and on understanding factors related to the physical and psychological well-being of older immigrants. Her most recent work examines stress and coping among diverse groups of caregivers of adults with serious mental illness.

Karen Sun, LCSW and SJSU alum, is a Medical (Renal) Social Worker who works for DaVita Dialysis in Union City. Karen helps patients adjust to life on dialysis through case management, supportive counseling on all areas of their lives, and education regarding transplant and modality options. Prior to this, Karen worked as a counselor for a community-based non-profit organization serving family and children. Karen’s research focuses on exploring how culture impacts caregiving-related experiences among Chinese American and European American family caregivers of persons with mental illness.

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