A brief anti-stigma intervention for Chinese immigrant caregivers of individuals with psychosis: Adaptation and initial findings
Abstract
Mental illness stigma has adverse effects on both the caregivers’ psychological well-being and the effectiveness of care that consumers receive. While anti-stigma interventions for family caregivers from Western settings have recently shown efficacy, these interventions may not be equally applicable across culturally diverse groups. Specifically, Chinese immigrant caregivers experience heightened internalized stigma, which predisposes the adoption of harmful coping strategies and reduced quality of social networks. We present an anti-stigma intervention based on a peer-family group format, co-led by a clinician and a trained family caregiver, to counter stigma among Chinese immigrants. Data are presented from a brief intervention administered to a pilot sample of 11 Chinese immigrant caregivers that provides: psychoeducation, strategies to counter experienced discrimination, and techniques to resist internalized stigma. Case vignettes illustrate implementation of this intervention, and how the peer-family format via interactive contact counteracts internalized stereotypes, encourages adaptive coping strategies, and reinvigorates social networks. Quantitative results further suggest preliminary efficacy in reducing internalized stigma for caregivers who evidenced at least some prior internalized stigma. This study constitutes an initial but important step towards reducing mental illness stigma among Asian Americans, for whom stigma has played a powerful role in the delay and underuse of treatment.
Introduction
Mental illness stigma has powerful adverse consequences for consumers and their caregivers. Stigma not only impacts people with severe mental illness, but also significantly affects their family caregivers who aid in their recovery (Struening et al., 2001), such as by increasing depressive symptoms (Perlick et al., 2007; Phelan, Bromet, & Link, 1998). Caregiver psychological well-being has also been shown to be crucial in determining the quality of care that the member with mental illness receives (Kim, Greenberg, Seltzer, & Krauss, 2003; Perlick, Rosenheck, Clarkin, Raue, & Sirey, 2001). A Minority Supplement to the Surgeon General’s Report (U.S. Office of the Surgeon General, 2001) has further addressed how cultural processes among Asian Americans produce especially negative patterns of stigma affecting caregivers. First, Chinese-Americans constitute the largest ethnic minority group within Asian Americans, and are particularly influential in the mental health help-seeking process of ill family members (Abe-Kim, Takeuchi, & Hwang, 2002; Snowden, 2007). Further, Chinese groups exhibit especially severe internalized stigma and adoption of harmful coping strategies. While Western-based interventions to reduce stigma and discrimination among relative caregivers have been recently developed by the National Alliance on Mental Illness (NAMI), these have primarily been implemented among Western-European groups. Given these particular challenges among Chinese immigrant caregivers, this article describes a brief intervention for reducing stigma among this underserved minority group.
Cultural effects of stigma on Chinese caregivers
Traditional Chinese cultural perspectives result in frequent negative stereotyping of the families of mental health consumers; for example, an individual’s development of mental illness is thought to result from lack of proper guidance from family members (Phillips, Li, Stroup, & Xin, 2000; Tsang, Tam, Chan, & Cheung, 2003; Yang & Kleinman, 2008). Internalized stigma is thereby manifested when Chinese caregivers internalize public stereotypes of blame for the illness; for example, over 50% of caregivers in Hong Kong experienced shame (e.g., feeling “embarrassed” or “helpless”; Mak & Cheung, 2008) or lower levels of mastery (Wong, 2000). This substantial internalized stigma further predisposes caregivers to adopt harmful coping strategies, such as withdrawal or restricting social contact to people who accept the mentally ill relative’s condition. Moreover, secrecy or concealing the ill family member’s treatment history (Link, Cullen, Struening, Shrout, & Dohrenwend, 1989) is predominantly endorsed by Chinese groups (Lee, Lee, Chiu, & Kleinman, 2005); between 59 and 69% of caregiver samples in Hong Kong and Beijing endorsed hiding the mental illness (Lee et al., 2005). The resulting isolation further leads to reduced quality of social networks, resulting in poor psychological outcomes such as sleep disturbance and anxiety (Wong, 2000).
Existing anti-stigma interventions and suitability for Chinese immigrant caregivers
While anti-stigma interventions for Chinese caregivers might specifically address this group’s circumstances, two interventions for family caregivers from Western settings have recently shown efficacy. These include the NAMI’s Family-to-Family program and the NAMI-based “In Our Own Voice– Family Companion (IOOV–FC)” (summarized in Table 1). Of these, IOOV–FC is the sole peer-family-based intervention that directly targets stigma. To date, this intervention has been implemented primarily among European-American caregivers (Perlick et al., 2011).Table 1. Anti-stigma effects of family caregiver interventions from Western settings.
| Intervention | Stigma | ||
|---|---|---|---|
| Name of intervention | Format | Focus | Stigma-related results |
| Family-to-Family Education Program (NAMI) | 12-week psychoeducational program led by peer-family caregivers | No | Increased acceptance of mental illness (L. Dixon et al., 2000) and caregiver empowerment (L. Dixon et al., 2000; L. B. Dixon et al., 2011) |
| In Our Own Voice–Family Companion (NAMI) | One-session, contact-based intervention. Two trained family members of a person with severe mental illness present a videotape that shows family members describing their experiences coping with stigma and moderate an interactive discussion. | Yes | Significant reductions in internalized stigma and secrecy (Perlick et al., 2011) |
Note. NAMI = National Alliance on Mental Illness.
While representing significant advances in reducing stigma among caregivers, these two interventions assume the presence of several caregiver attributes that may circumscribe their applicability to culturally-diverse groups. First, participation in NAMI’s Family-to-Family program requires attendance at 12 consecutive weekly meetings, which may not be feasible for caregivers from socioeconomically disadvantaged groups. This is particularly true of recently-immigrated Chinese groups because of tremendous pressures to pay back smuggling debt while working at minimum-wage jobs for up to 14 hours each day (Lai, Lo, Ngo, Chou, & Yang, 2013). Further, NAMI’s IOOV–FC, while intended to be an effective, short-term intervention, assumes that caregivers possess an adequate knowledge of psychiatric illness, its symptoms, and treatment. Yet ethnic minority groups may more frequently endorse indigenous interpretations of symptomatology, such as among Chinese immigrant relatives of individuals recently hospitalized for psychosis, where approximately 40% of relatives identified symptomatology as a condition other than mental illness (Yang & Singla, 2011). Because Chinese immigrant caregivers might display characteristics making them less likely to participate in established anti-stigma interventions, we designed a brief intervention to reduce stigma in this immigrant group.
Incorporating a peer caregiver co-leader as intervention component
Given these areas of need among Chinese caregivers, recent studies (Chiu, Wei, Lee, Choovanichvong, & Wong, 2011) demonstrate that “contact” provided by a peer caregiver co-leader enhances an anti-stigma intervention’s effects via:
Countering internalized stigma
The peer-led family format among Chinese groups might augment reduction of internalized stigma through “stereotype disconfirmation”. “Contact”—or counteracting stereotypes by providing individuals with an opportunity to interact with a caregiver who moderately disconfirms a pre-existing stereotype—has demonstrated efficacy in decreasing stigma (Perlick et al., 2011). As an example, a caregiver, peer-led psychoeducation program for family members in Hong Kong, Taipei and Bangkok led to increased mastery and empowerment 6-months post-intervention (Chiu et al., 2011). This intervention format, by conferring “expert” status upon family members, meets optimal conditions to diminish internalized stigma (Allport, 1979).
Modifying coping strategies and enhancing social networks
Having a peer family co-leader also facilitates the counteracting of harmful behavioral coping strategies. Joining a family-peer group in itself refutes secrecy and encourages selective disclosure of the illness to broaden social support (McFarlane, 2002). Further improvements in caregiver social networks include increasing social network size and introducing new resources (McFarlane, 2002). Because the family co-leader assumes a leadership role, relationships among family-member peers are more likely to be reciprocal. Ties may serve several functions by becoming “multiplex” relationships; i.e., co-participants may become friends or co-workers, forming multi-purpose relationships associated with positive psychological outcomes (Morin & Seidman, 1986). We view these social network developments as fundamental building blocks for resisting stigma.
Methods
Pilot intervention overview and rationale
Because of the tremendous work demands faced by this immigrant group (Lai et al., 2013), we propose a focal three-session intervention to increase knowledge of psychiatric disorders and to reduce stigma. Although we target our intervention towards caregivers, because stigma towards family members and consumers is highly intertwined among Chinese communities (Phillips, Pearson, Li, Xu, & Yang, 2002), we also aid the caregiver in countering experienced stigma towards the person with mental illness when possible. Groups lasted approximately 90 minutes and took place every week (totaling three weeks). All groups were conducted in Mandarin Chinese. Group participants were comprised of three to five caregivers; by design, caregivers were recruited from separate families (Chien, Chan, Morrissey, & Thompson, 2005). Each family member received a 15-to-20 minute weekly call from the clinician co-leader reviewing each session and addressing individualized concerns. This additional contact was implemented to encourage rapport and group attendance.
Adapted from Calmes’ (2009) stigma module, each session addressed a separate stigma-related topic. Our intervention to decrease how stigma impacted caregivers of people with psychiatric illness is predicated upon “Modified Labeling Theory”, which posits that individuals, as part of daily socialization, internalize conceptions of what it means to be labeled with mental illness (Link et al., 1989). For the purposes of our study, these internalized notions consisted of the degree to which members of the public believed that family members of people with mental illness were devalued and discriminated against. Once these expectations of community devaluation become internalized, harmful ways of coping such as secrecy or withdrawal may result in negative psychological outcomes (Link et al., 1989). Because both internalized stigma and experienced discrimination might increase adoption of harmful coping strategies, as well as themselves lead to adverse psychological outcomes, we specifically targeted these forms of stigma for intervention (Phillips et al., 2002).
Based on this rationale and a careful review of prior stigma research among Chinese groups, we deemed these particular components to be essential for Chinese immigrants: a) focal psychoeducation because of this group’s poorer recognition of psychiatric symptoms (Yang & Singla, 2011); b) coping with experienced discrimination reported by this group (Phillips et al., 2002); and c) resisting internalized stigma due to the severe self-stigma endorsed by Chinese caregivers (Mak & Cheung, 2008). Below we describe each session’s content.
Session 1 (Psychoeducation)
The first session focused on the causes and effective treatment of mental illness, emphasizing the possibility of gradual stabilization and recovery. We further incorporated psychoeducation about lack of insight to increase identification of how such symptoms may lead to impaired treatment use (Bejerholm & Eklund, 2007; Mak & Wu, 2006). Psychoeducation topics, which were facilitated by the caregiver co-leader, included how proper medication use (how it works, how use must be sustained, and side effects) might better control symptoms. The overall intention was to increase a biological understanding of the foundations of psychosis. However, when appropriate, Chinese cultural lay perspectives of mental illness, such as “excessive thinking” (Yang et al., 2010) were incorporated as potentially co-occurring with mental illness to “normalize” any stigma associated with a purely biological model of psychosis (Yang & Singla, 2011). This focal psychoeducation indirectly addresses stigma by improving understanding of prospects for recovery to counter stereotypes and caregivers’ potential blaming responses (L. Dixon, Adams, & Luckstead, 2000).
Session 2 (Countering experienced stigma)
The second session introduced behavioral skills to help cope with discrimination in work and social realms among caregivers, and when applicable, their ill family members. Caregivers’ cognitive, emotional, and behavioral reactions were examined in response to past discriminatory experiences, and adaptive reactions were proposed to cope with future discrimination. The proposal of alternative behavioral strategies by group co-leaders and caregiver co-participants to cope with discriminatory experiences is modeled on the behavioral problem-solving component of Multiple Family Therapy Group Therapy (McFarlane, 2002). The caregiver co-leader provided real-life examples of successful adaptation to discrimination, and demonstrated adaptive coping responses to reinvigorate social networks. These processes were further encouraged via mutual sharing among caregiver participants.
Session 3 (Countering internalized stigma)
The third session targeted internalized stigma among caregivers, especially regarding how such stigma might convey harmful beliefs and adversely impact the ill family members’ work and social functioning. A message of “realistic optimism” was conveyed in terms of identifying the ill relative’s capacity to productively work and function when stable (Schneider, 2001). Common stereotypes of work and social incompetence (Yang et al., 2007), and their impacts on consumers were presented. Following Calmes’ (2009) model, which is modeled upon simplified cognitive behavioral therapy principles (Beck, 1993), negative stereotypes were identified as automatic thoughts, subjected to alternative hypothesis testing, and then modified based on evidence.
Recruitment sites and procedures
For this pilot study, we recruited both caregiver co-leaders and group participants through two caregiver support organizations for monolingual Chinese immigrants. The first, the Chinese-American Family Alliance for Mental Health, is a grassroots community group based in New York City’s Chinatown with 10–15 caregiver attendees per month. The second, NAMI–New Jersey, has the most active Chinese-American outreach program among NAMI chapters nationally and conducts three ongoing psychoeducation groups (with 5–8 caregivers per month). Inclusion criteria for group co-leaders or participants were: a) bilateral Chinese descent; b) 18–75 years old; c) related to a consumer who the relative identified as having a diagnosis of a psychotic disorder (schizophrenia; schizoaffective or schizophreniform disorder; psychosis not otherwise specified) or mood disorder with psychotic features; and d) Mandarin speaking. Caregiver co-leaders were judged via initial interview to have previously experienced significant internalized stigma, but currently demonstrated capacities to challenge this internalized stigma and a willingness to share this experience with others. Caregiver co-leaders additionally committed to co-facilitating at least one group. Each group member participant was paid $25 total for participating in all three sessions. Caregiver co-leaders were paid $30 per session. All participants were reimbursed for local travel expenses.
Participants were called by the clinician co-leader after indicating interest during in-person presentations at support-group meetings. Written informed consent was obtained. Of the three groups, one was conducted in the NAMI building in New Jersey while the other two were held in a community center in New York’s Chinatown. Study protocols were approved by the Institutional Review Board of Columbia University Medical Center.
Caregiver co-leader training
In early 2011, one caregiver co-leader was recruited from the New York location (“T”, caregiver of her ill sister) and one from the New Jersey location (“U”, caregiver of her ill daughter). Each met individually with a Masters-level, Mandarin-speaking clinician (M.L. or G.L.), for the three-session anti-stigma curriculum. During training, caregivers both experienced the intervention itself as a participant, and simultaneously were given “mini-lectures” on the principles of the intervention (e.g., cognitive behavioral principles for countering internalized stigma). After each session, caregivers provided feedback, which led to minor edits in session content. Caregiver co-leaders prepared real-life examples before co-leading sessions.
Measures
Relatives’ overall attendance was monitored. Caregivers were also assessed 1 week prior to the intervention and immediately post-intervention by an independent evaluator. Because internalized stigma was identified as a primary outcome, we used the 7-item Self-Stigma of Consumer Families Scale to measure changes in caregiver self-stigma (Perlick et al., 2011). A sample item is, “I sometimes feel I am someone to be looked down on because I have a mentally ill relative living with me”. This measure was directly based on the 7-item Devaluation of Consumer Families Scale (Struening et al., 2001), which was the first measure to specifically assess perceptions of discrimination and devaluation towards families by the general public. The “Self-Stigma of Consumer Families Scale” has demonstrated good internal consistency in an assessment of stigma change among consumer family members in NAMI’s IOOV–FC (Cronbach’s alpha = .84; Perlick et al., 2011). This measure was translated into Chinese and then back-translated into English by two independent bilingual translators. Respondents rated agreement with each item on a 4-point Likert scale (1 = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree). Following prior literature, each item was dichotomized (0 = “strongly disagree” or “disagree”, 1 = “agree” or “strongly agree”; Yang et al., 2012); dichotomization was used because “disagreeing” or “agreeing” with stigma items is of utmost relevance. These seven items were summed to form a total score (0 to 7; higher scores indicating greater self-stigma, Cronbach’s alpha = .75). To elicit feedback, qualitative questions were asked: “What did you find most helpful about the intervention?” and “What would you change about the intervention to better address stigma?”.
Analyses
Because of the small initial sample size, we first provide clinical case material from each session to illustrate: a) how intervention principles were implemented and; b) how the peer-family format contributed to this process. We next examined whether internalized stigma changed pre- and post-intervention for the entire relative sample (N = 11). Additionally, per prior studies (Perlick et al., 2011), we analyzed the subsample of relatives who endorsed at least some internalized stigma (i.e., ≥3 on a 7-point scale) at baseline (n = 6). Significance was set at p < .05; given the small sample, trend effects at p < .10 were noted (all analyses two-tailed). Finally, for the qualitative data, the first author (L.Y.) conducted content analysis (“open coding”) following standard practice to identify emergent themes (Strauss & Corbin, 1994).
Results
Group participants
Eleven caregivers were recruited in 2011, comprising three relative groups. Of the caregivers, 10 were parents (all were mothers) and 1 was a spouse (husband); 9 relatives lived with the ill family member. The mean age was 59.2 (SD = 9.2) years, 10 were female, and 6 were married or had a partner. They averaged 13.6 (SD = 3.3) years of education with 6 having a part- or full-time job. Caregiver participants were all immigrants from China, and primarily Chinese speaking.
The ill family members were on average 30.6 (SD = 9.5) years old, 6 were female, and only 1 was married. They averaged 12.0 (SD = 2.6) years of education, with 2 employed and another 2 having student status. Most (9) had undergone psychiatric hospitalization previously, averaging 3.7 (SD = 3.1) hospitalizations. Average age at first psychiatric treatment was 20.9 (SD = 4.7) years and the average duration of illness was 9.7 years.
Clinical illustrations
Session 1: Psychoeducation
This first example illustrates how the family-peer format facilitated understanding of symptoms to reduce caregivers’ potential stigmatizing responses:
Another example of reducing blame and overcoming stereotypes centered on an in-depth discussion concerning difficulties with insight among ill family members. The co-leaders were instrumental to contributing real-life experience and clinical knowledge to this discussion:One participant mother (L) described her ill daughter as not wanting to go out and lacking interests after becoming sick. L was unclear whether these behaviors were attributable to a lack of effort from her daughter and sought to motivate her daughter by criticizing her (a common Chinese parenting strategy) to increase her activity. The clinician co-leader classified the daughter’s behavior as a form of negative symptom of psychosis, explaining that her lack of interests may be illness-based and not volitional. Another participant mother (R) then shared a similar experience of her ill daughter becoming very isolated, having poor hygiene, and losing all interests after becoming ill. Because R understood these behaviors to be linked with illness from prior interactions with doctors, she then developed several activities for her daughter, including singing karaoke, playing Mah-Jong, and having her daughter count the winnings during Mah-Jong to stimulate her thinking. Resulting from this discussion, L better understood her daughter’s behaviors as reflecting illness and, rather than blaming her, decided to gradually encourage her daughter to take up piano lessons as an initial activity.
One participant husband (J) stated of his ill wife that after a period of treatment, she refused to take medications by denying that she had psychiatric illness. J was uncertain whether his wife’s lack of treatment adherence was attributable to illness or whether she was intentionally avoiding treatment, and was also concerned that his wife might never recover. The caregiver co-leader (U) remarked that her daughter only recognized having illness after a long period when the illness progressed “to its lowest point”. Her daughter has since been able to gradually recognize her symptoms (such as when she becomes cognitively confused) and to initiate taking medications. Another participant caregiver (A, mother of ill son) empathized regarding how she struggled with her son’s intermittent treatment nonadherence and found that gradually confronting his denial of psychiatric symptoms was the best approach. The clinician co-leader facilitated caregiver empathy by recommending a book of why consumers often deny illness. The clinician also suggested making a simple timetable and setting a daily alarm to help facilitate medication adherence habits. From these examples, J then understood his wife’s denial to possibly be illness-based. Rather than continuing to believe that the illness was not recoverable, he stated that he gained several models by which to gradually challenge her lack of insight, and that he felt more hopeful about her future treatment and recovery.
Session 2: Countering experienced stigma
The following illustrates a caregiver coping with discrimination towards her ill family member during an involuntary hospitalization:
The following illustrates a caregiver’s successful coping with discrimination she herself experienced during an instance of perceived employment discrimination:One participant mother (B) described how her ill daughter was physically struck by police during one involuntary hospitalization where the daughter resisted. She described how her daughter was forcibly dragged outside during a freezing winter night without a coat and then sent to jail. B felt that excessive force was used and considered it a discriminatory act against someone with mental illness, as the daughter consequently developed posttraumatic stress disorder and B spent the next year clearing her daughter of criminal assault charges. The clinician asked B to examine her cognitive, emotional, and behavioral responses to this act. B reported at the time she was “sad and mad about her daughter being handcuffed” and that she consequently verbally attacked the officer, thus not effectively negotiating the situation. B further felt “traumatized” by this event. The clinician asked whether B could analyze her cognitions to arrive at a different response. While B still disagreed with the officer’s actions, she was able to change her original cognition to view the police as “just trying to do their job”, thus misunderstanding the situation. Changing this perception allowed B to feel much calmer about the situation; she now felt confident that she could more rationally problem-solve any similar future discriminatory situation.
One participant mother (A) planned to take unpaid sick leave from her job for one workweek. But her ill son stabilized sooner than expected, so A wished to work on Friday so that she could receive that day’s salary. However, her supervisor did not permit it. A felt this is discriminatory as others do not realize how unpredictable it is to care for someone with mental illness, and felt that if her son had a physical illness this would not have happened. A initially was angry and wished to confront her supervisor. However, upon reflection, she was able to see that her supervisor did not understand mental illness well. After calmly explaining to her supervisor her son’s psychiatric condition, she was able to return to work on Friday and receive salary. A thus modeled a problem-solving and educational approach for other caregiver participants.
Further, one mother modeled openness and education about her son’s mental illness:
Caregivers pooled knowledge about treatment resources via the peer-family format:Participant mother (X) wrote an article in a Chinese newsletter regarding her son’s mental illness, his discharge, and steps towards recovery. X carried this article with her and on occasion showed it to trusted friends to share this news. She seeks to educate others about mental illness in this manner.
Caregivers also formed friendships between families to counter the social discrimination faced by their loved ones; this led to caregivers becoming friends as well as co-group participants (i.e., forming “multiplex” relationships):The caregivers shared information about day treatment programs, vocational classes, psychiatrists, and other mental health clinics. This was key because of the scarcity of resources serving Chinese-speaking consumers.
Participant mother (H) suggested that her daughter become friends with the daughter of another participant mother (L), as the daughters are isolated but close in age. After conclusion of the intervention, the mothers planned for the daughters and families to meet.
Session 3: Countering internalized stigma
We provide an example of countering an “automatic” stigmatizing cognition focused on a mother’s cognition that her son may not be able to work again. The caregiver co-leader’s prior experiences greatly facilitated this process:
One participant mother (A) encouraged her son to work at a fast-food restaurant, but her son soon struggled. His supervisor felt the son couldn’t focus on his tasks or duties. A was very concerned that her son wouldn’t be able to work again. The clinician identified this as an “automatic thought”, or unconscious stigmatizing cognition, which exemplified “black-or-white thinking”, or viewing things at the extremes with no middle ground. The clinician then asked A to challenge this automatic thought with other evidence. A offered that her son struggled at this job, which required rapid processing of orders after an acute illness episode, but may be able to do simpler, less cognitively-demanding jobs. The caregiver co-leader (U) then offered that her ill daughter searched a long period for a suitable job after becoming ill and realizing she could no longer handle certain types of work. U recognized that her own thinking about her daughter’s ability to work changed from believing her daughter may never work again to understanding that she could work productively in more accommodating conditions. When reevaluating her initial automatic thought, A modified her original cognition by stating that her son may struggle at high-paced jobs when recovering from illness, but may be able to handle simpler work. A consequently no longer felt so despairing and wished to encourage her son to look for a more suitable, less-demanding job while he restabilized.
Quantitative results
A high overall attendance rate of 93.3% was achieved, as two relatives missed one session each (31/33 total sessions attended). To test whether our intervention decreased internalized stigma, a paired-sample t-test was first conducted among all caregivers (N = 11) comparing average internalized stigma scores post-intervention vs. pre-intervention. Results indicated that in the overall sample, caregivers’ internalized stigma was not significantly reduced post-intervention (M = 3.43, SD = 1.10) vs. pre-intervention (M = 3.51, SD = 1.03), t(10) = .23, p > .10). However, when examining the subgroup of caregivers who evidenced ≥3 on the 7-point internalized stigma scale pre-intervention (n = 6), there was a trend for caregivers’ internalized stigma to be reduced from pre-intervention (M = 5.50, SD = 1.05) to post-intervention (M = 4.00, SD = 1.26), t(5) = 2.09, p = .09.
Qualitative results
Emergent themes were identified in the caregivers’ qualitative responses. In response to “What was most helpful about the intervention?” participant caregivers commonly identified how the two co-leaders complemented one another. Participants stated that while the clinician was a good informational resource, the caregiver co-leader supplemented this information with problem-solving strategies and their real-life experiences to facilitate interactive support:
Reinforcing this theme, participant husband (J) stated: “She (caregiver co-leader) has real-life experiences to share, it adds to the theory (presented by the clinician) and is helpful”.Participant mother (C) stated: “She (caregiver co-leader) has a relative who is sick, has relevant experiences to share with group members. She (caregiver co-leader) has more personal experiences while (the clinician) did more of the teaching. They can complement each other”.
In response to “What would you change about the intervention?”, while some caregivers felt that the frequency and duration of the intervention were appropriate, others preferred more time to process information and to share experiences. One relative suggested expanding each session to 2 hours and the number of meetings from three to five to share more deeply. Another suggested having one follow-up meeting at 3 or 6 months to review material and how caregivers applied it in their lives.
Finally, one participant mother (X) spontaneously stated at the intervention’s conclusion how she benefited most, which best summarized the curriculum’s purpose:
There are all different types of situations, types of discrimination. The most important part lies in ourselves, how we deal with this discrimination. All you (co-leaders) have to do (to best help us) is present to us these ideas on how to cope with this discrimination.
Discussion
Because established anti-stigma interventions for caregivers may not suit the cultural circumstances of all groups, we describe a brief, anti-stigma intervention for Chinese immigrant caregivers. This intervention adds significantly to the literature because it builds upon prior anti-stigma interventions for caregivers that have been designed primarily for mainstream groups (L. B. Dixon et al., 2011; Perlick et al., 2011). We provide clinical illustrations describing implementation of our intervention, and quantitative and qualitative data suggesting preliminary efficacy. Conducting this pilot intervention also provided key insights into delivering an anti-stigma intervention for this group. First, we discovered that it was feasible to train a caregiver co-leader from this immigrant group. Given the great pressures to work and preference for secrecy (Lai et al., 2013), we were uncertain whether Chinese immigrant caregivers would commit to co-leading our intervention. We also found that the vast majority of caregivers, once engaged, participated in the treatment until its conclusion. This is significant given the high rate of drop-out among Asian Americans receiving psychological forms of treatment (Flaskerud & Hu, 1992). Furthermore, the treatment format appeared to be well-received, as having a caregiver co-leader engendered feeling understood and encouraged future optimism. This finding supports that use of a peer-caregiver leader may be effective as demonstrated with psychoeducation programs in other Asian contexts (Chiu et al., 2011). Participants also responded positively to having a clinician co-leader, who was respected for her mental illness knowledge and techniques for coping with stigma. While the intervention was too brief to modify internalized stigma completely, one main observed benefit was that participants learned to interpret stigmatizing circumstances in broader ways than they originally conceived, which served to alleviate stigma among caregivers and to open up new possibilities of recovery for their ill relative.
Conducting these groups further provided insights for developing the intervention for future use. While the skill-building components of challenging experienced stigma and internalized stigma were grasped by participants in single sessions, we observed that it would be more beneficial to provide participants more time (i.e., two sessions each) to apply these skills in everyday life. Furthermore, because this immigrant group faces a multitude of basic challenges (Lai et al., 2013), we sometimes deviated from the protocol to allow caregivers to “vent” about generic difficulties, such as general caregiving burdens associated with mental illness. Balancing between providing time for caregiver concerns and adhering to the anti-stigma curriculum enabled us to accomplish core objectives as well as to build group rapport and mutual support. Further, while we primarily implemented techniques from Western models to reduce stigma, the flexibility inherent within each session’s format allowed the possibility to address some cultural concerns (e.g., family shame) that might impact caregiver experience of stigma. Focus on culture-specific issues might be further developed as a formal part of the curriculum, which might have additional effects on modifying internalized stigma in this group. Combined with the caregivers’ qualitative feedback that the intervention be longer and more in-depth, we have decided to utilize five total sessions in the future (i.e., one session for psychoeducation, two sessions for coping with experienced discrimination, and two sessions for countering internalized stigma).
While this brief intervention was designed to address specific circumstances faced by Chinese immigrants, the session content may be applicable to Mainland Chinese groups. This work might complement recently-developed anti-stigma programs for people with psychosis in China (Fung, Tsang, & Wai-ming, 2011). Mental illness psychoeducation appears warranted as Mainland Chinese relatives of individuals with psychosis endorse explanations that differ from the biomedical model (Phillips et al., 2000). Family members of people with psychosis also evidence substantial internalized and experienced stigma that merit intervention (Lee, Chiu, Tsang, Chui, & Kleinman, 2006; Phillips et al., 2002). Furthermore, a focus on social functioning and work remains appropriate, as these are central to recovery from schizophrenia in China (Ran, Xiang, Huang, & Shan, 2001). However, our intervention, which is based upon a brief adaptation of a Western anti-stigma intervention model (Calmes, 2009), might require further cultural adaptation for use in a context such as China. For example, cultural constructs such as “face” or upholding one’s social standing might be even more salient and thus require specific modules targeting these specific cultural dynamics (Yang & Kleinman, 2008). Additionally, we have intentionally made this intervention brief because of the tremendous work demands faced by this immigrant group; an analogous intervention in China might extend the number of sessions.
Our study has several limitations, including the small sample and that group participants were self-selected. Since caregivers were recruited from mental illness organizations, they may endorse less pre-existing internalized stigma because of their demonstrated willingness to affiliate with other caregivers like themselves. Further, these caregivers may have been predisposed to share information with others and to grasp the anti-stigma strategies because of their prior involvement with mental health organizations. However, one might speculate that our intervention might show even greater effects among naïve caregivers who experience self-stigma and who had never received psychoeducation. Additionally, caregivers were predominately mothers, which further restricts the generalizability of the sample. Yet this is likely to be normative among Chinese groups, as gender roles are clearly delineated with women more likely to be caretakers of individuals with disabilities (Yu & Chau, 1997). Regardless, future studies should utilize larger samples and recruit caretakers from diverse sources (e.g., community mental health clinics and community organizations), as well as represent more diverse family relations. Future research might include associated measures of psychological functioning (e.g., perceived social support and coping) and measures of behavioral change (e.g., socialization with others) in addition to internalized stigma among caregivers. Future studies might also directly interview consumers about characteristics including diagnosis, degree of impairment, immigration status, and acculturation level. Another potential limitation to future dissemination is that clinicians predominantly use biological and single family treatments, to the exclusion of multi-caregiver group therapies (McFarlane, Dixon, Luken, & Lucksted, 2003).
Nonetheless, we present initial evidence supporting a brief anti-stigma intervention addressing core stigma concerns experienced by Chinese immigrant groups that might help address treatment delay and underuse in this group (Yang, Phelan, & Link, 2008). This intervention might also provide a template to be adapted for other Asian American ethnic groups, and other ethnic minority groups altogether. Future studies might also investigate acculturation differences between parent caregivers and consumers, which might lead to differential experiences of stigma. Our articulation of an anti-stigma format, clinical illustrations, and initial quantitative and qualitative findings lays a foundation to provide caregivers of people with psychosis from this underserved minority group the capacities to resist stigma and to achieve full participation in society.
Funding
The study was supported by National Institutes of Mental Health Grant K01 MH73034-01, and grants from the Cultural Competence Unit– NYS Office of Mental Health, Award for Advancing Minority Mental Health– American Psychiatric Foundation, and the New York State Office of Mental Health, which was awarded to the first author.
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Biographies
Lawrence H. Yang, PhD, is an associate professor in the Department of Epidemiology at Columbia University. Dr. Yang researches how culture is conceptualized in relation to stigma and is currently implementing interventions to reduce mental health disparities. He has received multiple national-level awards for this work. He is currently the Principal Investigator of R01 MH096027-01, which examines the social cognitive underpinnings of the new designation of the “high risk for psychosis”, a potentially transformative new syndrome to detect psychotic signs before symptoms develop into a full psychotic disorder. He also is the Co-Principal Investigator of the California state-wide Promising Practices Program at the Center for Dignity, Recovery and Empowerment. His published works focus on the study of psychiatric stigma among Asian Americans and other cultural groups, thereby illuminating the mechanisms that lead to mental health disparities.
Grace Ying-Chi Lai, MS, LCSW, is currently a PhD candidate at New York University, Silver School of Social Work. After receiving her MSW from Columbia University, she worked with immigrants and minority population with mental health disorders in New York City. In addition, she is a Registered Play Therapist with an interest in working with children with adjustment and behavioral issues. Her research focuses on Asian American mental health and community-based treatment.
Ming-Che Tu, BA, is a doctoral fellow in Counseling Psychology in the Department of Applied Psychology at New York University. His research interests focus primarily on Asian American mental health, specifically among immigrant populations and mental health disparities. He has published several peer-reviewed articles on these topics. He is currently engaged in multiple qualitative studies of the challenges that mental health professionals working with Asian Americans face and is also studying the experiences of Chinese young adult recent immigrants.
Xiaomei Maggie Luo, MA, is the Director of Communications and Technical Resources and Program Coordinator of Chinese American Mental Health Outreach Program (CAMHOP) of the National Alliance on Mental Illness of New Jersey. Maggie has been working with immigrant families affected by mental illness in the past decade and has been helping them to navigate the mental health system through community support groups. She is a trained mental health cultural competency trainer and received her master’s degree in communications with a health focus from Rutgers University. Maggie works with a dedicated team of CAMHOP volunteers in cultivating grassroots awareness on mental health issues, and promoting cultural competence among mainstream mental health agencies and practitioners.
Ahtoy J. WonPat-Borja, MPH, is a doctoral candidate in psychiatric epidemiology at Columbia University’s Mailman School of Public Health. Ms. WonPat-Borja researches barriers to mental health services utilization in Asian populations. Her published works focus on mental illness stigma and other cultural issues related to mental health care.
Valerie Wai-Yee Jackson, MPH, is currently a PhD candidate in clinical psychology at the California School of Professional Psychology in San Francisco. Her research interests include mental health stigma in underserved populations and reducing barriers to care using integrated behavioral health. Ms. Jackson is also a Research Consultant on a California state-funded initiative to reduce stigma in immigrant and racially/ethnically diverse populations. Her published works focus on program evaluation and epidemiologic approaches to mental health services.
Roberto Lewis-Fernández, MD, is the Director of the New York State Center of Excellence for Cultural Competence (CECC) at the New York State Psychiatric Institute and a Professor of Clinical Psychiatry at Columbia University. Dr. Lewis-Fernández researches mental health services for Latinos and other ethnic populations. The CECC conducts research on interventions to reduce disparities in access and quality of mental health services across cultural groups in New York State. His published works focus on the intersection of culture and mental health services research and on interventions to reduce disparities in service delivery.
Lisa Dixon, MD, MPH, is the Director of the Center for Practice Innovations at the New York State Psychiatric Institute and Columbia University and a Professor of Psychiatry in the Department of Psychiatry at Columbia University. Dr. Dixon researches mental health services for individuals diagnosed with serious mental illness. She is currently the Principal Investigator of the Recovery After Initial Schizophrenia Episode-Implementation and Evaluation Study. She has published over 200 peer reviewed articles focused on the quality of care for individuals with severe mental illness and their families.
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Article first published online: December 6, 2013
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