Carers’ representations of affective mental disorders in British Chinese communities
Kevin Koo, Yale University School of Medicine, 367 Cedar Street, New Haven, Connecticut 06510, USA
Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers’ narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.
Mental health disorders have recently entered the discourse on how sociocultural belief systems can shape the experience of health and illness in minority ethnic groups. Studies of patients’ conceptual models of psychiatric illness have centred on cultural representations (Karasz 2005) and the use of narrative and social symbolism (Mallinson and Popay 2007) to explain variations in symptoms and treatment. Further underscoring the need for a more dynamic framework for the experience of mental illness in minority ethnic communities are persistently low rates of service uptake (Wells et al. 1994) or the delayed engagement of professional support (Lin 1983). A number of explanations for the underutilisation of services have been proposed in the psychiatric and psychological literature, including variations in symptom manifestation and inconsistent reporting (Gureje et al. 1997, Ryder et al. 2002), increased social stigma of mental illness in traditional societies (Durvasula and Mylvaganam 1994, Narrow et al. 2000) and cultural differences in responding to psychiatric symptoms (Jacob et al. 1998). But the characterisation and contextualisation of mental illness in minority ethnic populations through a sociological lens are less well-articulated.
Smaje (1996) has argued that Bourdieu’s theory of practice and its notion of the habitus, which is ‘the durably installed generative principle of regulated improvisations’ (Bourdieu 1977: 78) are a useful approach to explain the concept of ethnicity as having elements of both identity and structure that are interrelated and mutually dependent. This approach allows for the interaction between components of identity, including cultural, religious and geographical forces; and social structures, such as employment, environment and socioeconomic characteristics. If patients hold ethnic identities that are malleable and dynamic, then illness may be a socioculturally constructed experience wherein these identities mediate the discourse between patient and healer, illness and treatment or individual and health system. This would support a relativist understanding that discrete illness categories can only be defined within their respective cultural contexts. If mental illness is taken to be deviation, however arbitrary, from the behavioural norms accepted by a community, and if such norms are entangled in the expression of a culturally bounded ‘good life’, then perhaps deviations from the norm must also be categorised within the limits of each ethnic, cultural or societal context. Yet even when the expression of illness among diverse groups varies considerably in attributions of the cause and manifestations of disease, certain fundamental themes may underlie this expression (for example, overwhelming grief and the inability to maintain control), favouring a more universalist position. In practice, this duality is an oversimplification; previous studies of mental illness in minority ethnic groups have drawn upon both positions (Fenton and Sadiq-Sangster 1996).
This study explores how a Chinese population living in Britain constructs and responds to the experience of unipolar and bipolar depression. Affective disorders are fertile grounds for sociological enquiry. Because emotional experiences can be culturally determined (Kleinman and Good 1985, Wierzbicka 1994), understanding the experience of unipolar and bipolar depression in a non-western sociocultural framework may provide insights on the degree to which patients and their carers navigate between disparate health belief systems, which might then contribute to more nuanced explanations for suboptimal patterns in service provision and access.
While it is the patients who have been the subject of most sociological research in mental health, attention is now turning to carers, who have an integral part in the informal care of patients with affective disorders (Brodaty et al. 2005, Cleary et al. 2006, Hsiao et al. 2006, Kokanovic et al. 2006). Although the literature on caring in general is growing, minority ethnic carers, and in particular those of patients with mental illness, remain relatively neglected (Eley 2002). As negotiators and translators in the patient–provider model, carers often come to the illness experience as an ‘other’ but soon bear most responsibility for patients’ wellbeing and interactions with health professionals. In this way carers also possess their own accounts of illness that are independent of that of the patients. By being at once intimately involved in the care of patients yet also witnesses to the provision of mental healthcare in their communities, carers offer a valuable set of insights on the daily caregiving responsibilities for a particular minority ethnic population and the challenges of accessing and integrating healthcare into the construct of the carer–patient routine.
Taking into consideration past work on the representation and expression of mental illness in minority ethnic groups (Fenton and Sadiq-Sangster 1996), this exploratory study uses a qualitative methodology to accommodate a potentially broad, complex set of ideas and discourses. An explanatory model of illness encompassing the individual’s interpretation of sociocultural beliefs on cause, symptoms and treatment guided data collection, with the aim of synthesising a novel perspective on affective disorders in the British Chinese community and distilling distinctions between sociological approaches that may have practical implications for improved community support and healthcare delivery.
A carer was defined as an individual who provides unpaid assistance with activities of daily living and emotional support. Fourteen carers, aged 41–70 years, of individuals diagnosed with unipolar or bipolar depressive disorder were recruited by referral from staff at two community health organisations in Manchester and Leeds, UK, providing both formal and voluntary services targeted at British Chinese clients; or by respondent-driven sampling, in which study participants referred other carers for eligibility screening. As affective disorders fluctuate in severity, participants must have been the primary carer at some point during the disease course of the person being cared for, but having active caregiving responsibilities during the study was not a requirement. Most participants were family carers (six for spouses and four for children) and all but two were women. The participants were first-generation immigrants from Hong Kong, Macao or mainland China and had spent between 4 and 10 years living in the UK. Table 1 summarises the participants’ characteristics.
Table 1. Participants’ characteristics
| 1||F||41||Mandarin||Daughter-in-law; wife||Depression||4|
Semi-structured interviews lasting 45–60 minutes were conducted in person with each participant, who could be interviewed using English or a dialect of Chinese (Mandarin, Cantonese or Hakka). This format was selected to capture the broadest cross-section of participants’ responses and to enable categorisation and thematic coding. The interviews were conducted using topic guides designed around Kleinman’s explanatory model of illness (Kleinman 1980). For each topic specific probes were used (for example, ‘What treatments have the doctor prescribed?’) to help keep conversations focused and concrete. Guides included standardised narrative prompts (for example, ‘And then what happened?’) to encourage participants to provide complete descriptions of the patient’s illness or examples of their experiences with providers.
The interviews were recorded digitally, transcribed and annotated with contemporaneous field notes. Non-English interviews were conducted and translated by the author, who has native fluency in the dialects used and the concepts of mental health and illness from both western and Chinese medical traditions. English words were included verbatim. Community health centre staff reviewed the transcripts to ensure accuracy of interpretation. The participants gave their informed consent prior to data collection and all procedures were approved by the Faculty of Social and Political Sciences Ethics Committee, University of Cambridge.
The data were analysed using a manual content indexing technique (Spencer and Ritchie 1994), involving a systematic procedure for examining transcripts to extract major themes and subthemes for further analysis. Preliminary coding was followed by formal analysis (Plunkett and Quine 1996), leading to the generation of thematic narratives. Coding assistance and review were provided by two co-researchers experienced in the methodology. All narratives were subjected to cross-case analysis to link ideas and evaluate data within the context of the study.
Social isolation as a cause of depression
The respondents frequently identified social isolation as the primary cause of unipolar and bipolar depression. Consistent with findings that depressive symptoms in Asian cultures tend to be reported as disturbances in interpersonal relations (Lewis-Fernandez and Kleinman 1994), the manifestation of illness symptoms was described as inevitable following prolonged periods of isolation. Some carers believed that certain individuals were more inclined to spend time alone; one carer called this ‘a personality problem’. Twelve carers attributed the isolation to living in a foreign country, and lacking a common language and opportunities to meet new friends:
If I were unhappy, I could talk about it with someone. Once you talk about it, you feel more comfortable instead of, ‘Oh no, it’s all over for me’… [The patient] didn’t have that. (Participant 4)
Participants discussed the family unit as a central feature of the Chinese social experience. The dissolution of this unit as a result of children starting their own families and breaking from the extended, multi-generational clans common in East Asia was thought to have contributed to the deterioration of patients’ social resources. Studies of immigrants have found an increased risk of affective disorders due to unfamiliar stressors and the absence of robust social opportunities, such as a well-integrated family life, prior to the creation of new ones (Escobar 1998). This study supports this model of increased vulnerability despite partial acculturation, such as the adoption of smaller, immediate family units. The shift in family dynamics away from a traditional extended structure, coupled with intergenerational conflict secondary to transitioning to a more individualistic society, may have undermined collectivist mechanisms, leading to social isolation and an erosion of resilience.
‘Putting out’ emotions and the burden of accumulated stress
Half the respondents mentioned the failure to express or vent one’s emotions as a way in which social isolation could lead to the symptoms of depression. Dispersing emotional stress was described as clearing the burden of accumulated negative thoughts and emotions, in contrast to the concept of triggering factors, often used in the western paradigm to identify specific aetiologies.
If you don’t tell anyone, you’ll just keep thinking about it. And then it bottles up inside you. The more you think about it, it gets blacker. It gets worse … You need a way to ‘put out’ your happiness or unhappiness. (Participant 4)
A disease of ‘thinking too much’ has been described in accounts of depression among South Asian women in the UK (Fenton and Sadiq-Sangster 1996). While those accounts centred on thinking too much as a state of mind and a specific disease entity, the participants in this study focused on the risk for disease posed by emotions building up, becoming ‘blacker’ and more severe in its manifestation.
Participants also described the additional burden of stresses that would develop when life events were out of one’s control. Major life events, such as deaths in the family, moving house or becoming ill, were described as throwing the patient to the ‘edge of the falling point’ beyond which additional harm and injury were inevitable. This is consistent with previous observations of fatalism in the Chinese belief system (Bhugra 2005, Iwamasa and Hilliard 1999, Kleinman and Good 1985). One carer discussed the ‘light-switch’ effect that working in a stressful job had in causing depression:
She had to survive by continuing in that very painful job. After a year or two, a long period of time in that upsetting job … [snaps fingers] Out of control. That’s why she got sick. (Participant 14)
Only one participant mentioned genetics: the patient’s brother had experienced an illness resembling depression, so the carer concluded that there was a hereditary component.
Philosophy and moral obligation in caring
Elements of Chinese philosophy were noted to have a protective role against mental illness. The Confucian concept of cultivation was cited by nine carers:
You have to cultivate yourself … You need to see more in the world. It couldn’t do you harm. Keep growing, cultivating. It’s an important cushion for mental health. (Participant 4)
In this context, cultivation means a desire to promote one’s learning and facilitate the expansion of intellectual knowledge. Carers interpreted patients’ lethargy and idleness during depressive episodes as their having lost this sense of cultivation and thus their protection against illness. Similarly, carers described a sense of duty or moral obligation in caring for ill family members, even though nearly all respondents admitted that the stress of the caregiving role was a burden on their lives:
My daughter told me, ‘Should Dad go to the nursing home?’ I said, ‘Not now, it’s not possible. I couldn’t watch him go there, without family. It’s a responsibility, it’s my duty. You couldn’t say, he is sick, let’s ignore him. That’s cruel and inhumane’. (Participant 8)
The source of this commitment to the caregiving role may be contextualised in Chinese moral values, in which piety is an expectation. Home-based care is considered to prioritise love, warmth and sincerity that external institutions are thought to devalue. Shifting the caregiving role to non-family members is viewed as the social equivalent of the patient’s suicide: both would indicate that the family has failed in its obligation (Fan 2007). Stronger feelings of piety, however, may not protect against the emotional burden of caregiving (Lai 2009). Although this sample did not include enough adults caring for their parents to draw conclusions about the negotiation of filial piety, it would be interesting to explore the moral boundaries in caring for an aged parent with a mental illness, particularly among those children who are more wholly acculturated. Studies of South Asians in Britain have found Mason’s (2004) concept of ‘reflexive relationism’ to persist even among the younger generations for whom the majority British culture is the dominant framework of behaviour (Chattoo and Ahmad 2008).
Describing symptoms of depression
Descriptions of patients’ symptoms were generally consistent with the diagnostic criteria for depression (American Psychiatric Association 1994), such as loss of interest in everyday activities (‘nothing interests him any more’), change in appetite (‘he would be just hungry all the time’) and fatigue (‘very tired … he wouldn’t get up or sit up or anything’). These descriptions frequently feature in lay accounts of depression irrespective of ethnicity or gender, and as a group, these symptoms interfere with the realisation of and participation in community social life (Mallinson and Popay 2007).
Reports of depressive symptoms in ‘non-western’ populations suggest that somatic presentation is more common in East Asian groups (Odell et al. 1997). The unitary mind–body perspective is thought to contribute to patients’ interpretation of both somatic and psychological symptoms as depressive disorder (Cheung and Lau 1982), while other studies have found that somatisation is a phenomenon caused principally by a discrepancy in the conceptualisation of illness between patient and provider (Parker et al. 2005, Zane et al. 1982). The data here do not indicate higher frequency of somatisation in Chinese patients; only two carers described physical imagery: ‘It’s soreness all over, your muscles, everything … he thinks, “It’s painful here, it’s painful there”. But it’s in your head’ (Participant 8).
Fenton and Sadiq-Sangster (1996) have offered several explanations for the tendency to somatise mental illness in minority ethnic patients, from the patients’ non-recognition of the mental component of the illness or of the connection between physical and emotional symptoms, to the presentation of only physical symptoms to providers, with or without recognition of their mental states. Carers in this study were able to recognise the emotional aspects of the illness, such as prolonged sadness or lack of interest, and in some cases could distinguish between the patients’ complaints and the unifying source of the disease (‘it’s in your head’). For illnesses like affective disorders in which patients may not be able to articulate symptoms, especially emotional symptoms, fully, carers tend to draw comparisons between the patient’s ‘normal’ and ill states; and they may prefer to report fluctuations in mood, interest or emotional lability rather than ‘soreness’. Thus, in contrast with findings of somatic symptoms among minority ethnic patients due to non-presentation of mental symptoms by patients themselves (Currer 1986, Fenton and Sadiq-Sangster 1996), these data suggest that carers are more likely to report mental symptoms to providers, perhaps through the filter of the symptomatology they believe to be appropriate in a biomedical context (Lin and Cheung 1999).
Responses to the burden of caring
Two main themes emerged from the narratives on the patient–carer relationship. Firstly, the carers were often targets of patients’ delusional episodes: ‘She could be fine one moment, then suddenly the illness would “hit” and she would think you were trying to harm her’ (Participant 1). Another participant recalled the patient’s (his wife’s) criticism when he quit his job because her depression had become a threat to her safety: ‘Without warning, she called me useless … She didn’t understand that I was at home to care for her. So it was very hard on me’ (Participant 14). Secondly, the participants frequently identified the patients’ complete dependency on their carers. During severe episodes of depression, patients were described as being incapacitated and infant-like: ‘It’s horrifying. If I weren’t caring for him, he would surely die. Or kill himself. He couldn’t possibly take care of himself’ (Participant 8). The stress of day-to-day care during illness episodes had profound effects on the carers. Many participants expressed feelings of hopelessness or being trapped by their caregiving roles: ‘I would think, is this how my life ends? [sobs] There was nobody to help me. Very lonely, very helpless. I just didn’t know how to get on with my life’ (Participant 1).
These responses fit within the framework of coping behaviour known as ‘engulfment’, in which the caregiving role becomes the dominant feature of the carer’s self-identity. The role subsumes the other elements of the carer’s life, leading to an unstable patient–carer relationship that augments the burden of caregiving. Past work on family carers of patients with chronic diseases has suggested that although many carers are initially engulfed, they innovate coping strategies that enable them to move towards the balancing framework that preserves and maintains autonomy (Atkin and Ahmad 2000, Twigg and Atkin 1994). For these minority ethnic carers, however, that transition was less clear, despite caregiving having gone on for years. This was particularly true when the negotiation of caregiving responsibilities, which had been used to relieve the carer of some responsibilities while promoting the autonomy of the patient (Katbamna et al. 2000), was not possible due to the severity of mental illness. The imagery of patient as infant, invoked by more than half the respondents, could be a defence against or response to engulfment. While characterising the patient this way might underestimate the patient’s autonomy, it helps carers deflect verbal attacks, perhaps reducing the stress of their role.
Naming the illness
Every carer in this study expressed initial hesitation in accepting a diagnosis of depression. During the interviews, carers used the terms ‘depression’ and ‘bipolar’ infrequently and preferred to say ‘sickness’ or …‘condition’:
We Chinese say, ‘You have a weakening of the nerves’. It means you’re too exhausted, you have too much pressure. That means weak nerves, you can accept [the diagnosis]. (Participant 13)
There are several explanations for this. First, mental illness is a stigmatising subject. Carers explained that the idea of a mental illness had a strongly negative connotation as an abstract entity and with regard to the patient and family. Using the term ‘sickness’ widens the scope beyond psychiatric disorders, deferring the social mediators of stigma and embarrassment. Carers also used positive framing techniques to qualify the nature of the illness:
If you ask us, ‘Do you have a mental illness?’ They very carefully say, ‘I have an illness, but it’s not this certain kind or that kind’. Like, it’s not the violent kind or the madness. (Participant 5)
‘Mental illness’ means you run around with knives trying to kill people. (Participant 9)
This not only engenders a protective effect by reducing stigma but may be employed by carers as a coping mechanism through normalisation, a mechanism similar to that of parents caring for a child with chronic illness (Atkin and Ahmad 2000).
Another explanation lies in carers’ rejection of medical terms as accurate descriptors of the illness. Two alternative nomenclatures are worth noting. The first refers to the patient’s ‘heart’; a concept found in Chinese phrases such as ‘illness inside the heart’ for mental illness, ‘doctor of the inside heart’ for psychiatrist, ‘heart imbalance’ for mood swings and more than a hundred other Chinese characters for emotional responses (Miller 2006). This duality of physical and emotional meanings reflected in the idea of a central ‘heart’ extends beyond mental illness in the Chinese (Krause 1989). A second set of names called the illness ‘weak nerves’, which suggests aetiology and site of manifestation and recalls the idea of weakness resulting in fatigue and depression in South Asian women (Fenton and Sadiq-Sangster 1996).
Traditional Chinese medicine (TCM) in depression
Chinese patients’ preference for TCM in treating disease has been used to explain the poor utilisation of psychiatric services. Some have argued that Chinese patients are more likely to seek TCM because they more often trust the advice of Chinese practitioners, perhaps because members from within this community would better understand group values and moral philosophy, such as the need for restoring ‘cultivation’. But others have found that attitudes and behaviour toward TCM vary depending on the nature of the illness (Ma 1999, Yang et al. 2008). The present findings are not consistent with this model: though carers trusted TCM for some physical ailments, they strongly favoured western medication for depression. It is possible that the distinction between types of mental illness that was an important focus in this research was not emphasised in previous work.
Carers believed TCM was not an effective treatment alone but could be used as a supplement to western medication. ‘For mental health, [TCM] is not very effective. Skin diseases, it’s fine. My son, his skin had problems. The Chinese doctor healed him immediately’ (Participant 8). Despite a preference for medication over TCM, Chinese carers had reservations about the side effects of antidepressants:
I don’t let [the patient] take the pills too often because the medicine is a poison, like a toxin. If you take too much, you’ll get worse because your energy flow (qi) is interrupted. (Participant 8)
Fears about ‘accumulating too much medication’ may explain findings that Asian psychiatric patients have the shortest treatment periods compared to other minority ethnic patients (Cornwell and Hull 1998) and may use medication and TCM concomitantly (Green et al. 2006, Miltiades and Wu 2008). Interestingly, none of the carers in this study questioned the efficacy of medication in treating depression as a reason for non-adherence. Rather, they worried about the medication’s impact on TCM principles of energy and holistic wellbeing.
Talking about depression: the language barrier
Every carer cited language as a major obstacle to effective encounters with healthcare professionals. Ineffective communication contributes to increased medical errors and results in the disempowerment of patients and carers, especially those in vulnerable groups, such as non-English speakers (Greenhalgh et al. 2006). Respondents sometimes brought their own interpreters because those used in general practices were often unavailable or unreliable. Some general practitioners (GPs) may prefer family members (often carers) as interpreters because this requires less disruption to the practice’s organisational routine (Greenhalgh et al. 2007) but individuals who are not trained to interpret the linguistic complexity and cross-cultural incongruence of mental illness may further complicate the encounter.
Even with live translators, carers’ lack of knowledge regarding mental illness in the vernacular of the clinician sometimes impeded effective communication. ‘I had a translator go with me to the doctor, which helped a little. But I still didn’t understand about the illness, so I didn’t know what to ask’ (Participant 1).
The many dialects spoken in British Chinese communities are an additional barrier. Minority ethnic carers may be too timid to book double appointments or specify their dialect. One Mandarin-speaking carer described being provided a hospital interpreter for Chinese who spoke Cantonese but not Mandarin.
Carers also cited trust and confidentiality as challenges to telephone-based interpretation, used at surgeries where live interpreters were not available. The disclosure of health problems to non-group members was a significant barrier. ‘Of course you can’t speak to a stranger on the other end of the phone … It’s like a third person that you never met’ (Participant 7). Adding to reports of minority ethnic patients describing health professionals as unhelpful or insensitive (Li et al. 1999), British Chinese carers in this study reported feeling manipulated by staff and receiving substandard care. Compounded with an absence of enforcement of cultural competency training in the mental health service (Bhui et al. 2007), unsympathetic responses from health professionals may undermine the otherwise beneficial support for the carer (for example, coming to accept the disease) that would be achieved through contact with the health service (Atkin and Ahmad 2000).
Finally, carers wanted more family involvement in treating mental illness:
My husband’s nurse … only interacts with the sick individuals, not the whole family. I think that’s so unfair because the families are very vulnerable by this disorder. The families are particularly sensitive. (Participant 1)
The importance of a strong network of social contacts to patients recovering from mental illness has been shown in many populations (Bhui and Bhugra 2002, Lloyd and Moodley 1992, Wong 2007). For Chinese carers and patients, however, this network may serve additional purposes. Contrary to western conceptions of being intrusive or pathological (Falloon 1985), family involvement in psychiatric treatment underscores the position of the individual as part of a social group. Because collectivist frameworks emphasise common fate and group interest, the desire for Chinese carers to participate in the patient’s treatment and recovery reflects a shared illness experience that becomes a group endeavour, not a personal decision.
‘Face loss’ and stigma in public and private
Carers discussed increased sensitivity to stigma within the community driven by stereotypes about mental illness. Two kinds of stigma were identified. Firstly, carers described public stigma, when a community endorses prejudices and engages in discrimination (Corrigan et al. 2002):
I’m afraid of the rumours. I can’t go anywhere without people staring at me. They say, ‘Mr X.’s wife is crazy. She’s a lunatic’. So they don’t want to talk to us, invite us to dinner, anything. (Participant 9)
Public stigma impacts on in-group membership, which is particularly important in collectivist communities where the role of the individual often serves the function of the group, because the labels that mediate stigma are applied directly to the patient and, by association, the carer (Link et al. 2001). Carers also discussed the need to keep information about mental illness contained within the family: ‘Chinese tradition states, family business is no one’s business. When something happens at home, you “close” it, you bury it. Don’t tell anyone’ (Participant 4).
Secondly, carers also described self-stigma, when members of the stigmatised group internalise public stigma. Self-stigma is known to reduce patients’ self-esteem and confidence but it may also affect the families of patients (Corrigan et al. 2006):
How do you tell someone, ‘My daughter has a mental illness’? … People think you are a bad parent. You did something wrong. And you start to believe it. (Participant 13)
Respondents’ feelings of embarrassment or shame were strongly connected with the Chinese concept of ‘face loss’, or losing one’s social identity (Chang and Horrocks 2006). Although internalised shame can impact on all aspects of the illness experience, self-stigma is particularly detrimental to help-seeking and treatment for both patient and carer. The effect of stigma may be particularly devastating in Chinese communities because of the loss of status associated with discrimination. Link and Phelan (2001) have argued that the component parts of stigma, including labelling, stereotyping, separation, status loss and discrimination, occur through the exercise of power. More than individual mistreatment, discrimination comprises structural or institutional marginalisation, mediating the transformation from loss of status to social disadvantage. While this argument has been located within political, economic, or educational power (Scambler 2009), it may be useful in explaining how stigma results in ‘face loss’. For communities based on collectivist values, individual identity is derived from group membership, from which power arises. If stigma, perceived and perpetrated, operates by denying individual status within the group, then for these members identity is immutably and adversely affected.
Support for carers
All carers in this study had at some point attended support groups for carers, though about three-quarters no longer participated. Respondents described the function of support groups as the opportunity for ‘getting out’ and ‘away from the routine’. Most Chinese participants were not aware of statutory services for carers and felt dissatisfied with the amount of support they were currently receiving. In this discussion, the issue of burdening others with caregiving obligations was mentioned repeatedly. This was especially true for ‘time out’ programmes intended to allow carers time away from caregiving by providing a visiting health worker to look after the patient for a day. There are data suggesting that community nurses may indirectly provide support by observing and understanding carers in the home, facilitating trust and strengthening social ties outside the context of family obligation (Atkin and Twigg 1993). Yet others have argued that the low uptake of community services by minority ethnic carers rests as much on cultural traditions of caring from within a generational or family unit as on lack of access or information (Gunaratnam 1997). Carers in this study were strongly opposed to this scheme and were wary of the quality of care that non-family members who could not speak their language could provide. Several carers also rejected having community nurses visit the home to assist in caring responsibilities because this would transfer the responsibility of the carer to become the burden of the nurse, which, despite being the very purpose of such programmes, appeared to be inconsistent with the social expectations of the Chinese community. ‘The concept of self-sufficiency is cultural … Chinese people must stand alone. You don’t bother other people [with your responsibilities]’ (Participant 6).
Seeking outside assistance was described as the failure to keep order in the home, the fundamental social unit, which would be considered a shameful social transgression. The entity of social shame may be a robust driver of carers’ reluctance to prioritise their needs alongside that of the patient. Consistent with Folkman and colleagues’ (1986) stress and coping theory, these data may also explain carers’ resistance to engage broader support services, and the findings extend observations on carers’ subjective appraisal of burden and application of cultural beliefs to attenuate emotional stress (Aranda and Knight 1997, Knight et al. 2000).
Despite broad efforts to provide more culturally competent care, seeking healthcare remains a major source of stress to immigrant groups, in part because the healthcare environment amplifies sociocultural incongruence that may further alienate minority ethnic patients and their carers (Orb and Wynaden 2001). Formal and informal carer support groups now exist in areas with high concentrations of minority ethnic groups but it appears that retention rates for British Chinese carers in groups that are not exclusively Chinese are quite low. Studies have suggested that improving service delivery to Chinese carers requires a reconfiguration of the social organisation of the group based on a collectivist framework (Chien et al. 2005). This includes the strengthening of interpersonal relationships and framing social obligation through familiar concepts of benevolence and virtue (Spector 1991). These data indicate that facilitating an escape from the pressures of caring using activities that emphasise collective engagement outside the context of caring may help to maximise the benefit that carers derive from participation. Popular models for therapy premised on emotional openness by the individual are unlikely to attract British Chinese carers because their collectivist values reward control and the suppression of emotional expression in order to maintain group harmony (Kanazawa et al. 2007). Openly exhibiting and discussing emotional concerns, whether in support groups or family therapy, are likely to contradict strongly embedded social norms.
Relative to the increasing attention to minority ethnic health, there have been few studies of the Chinese, and the sociology of informal care in mental health and illness remains less well-defined than that of the psychological or psychiatric literature. This study focused on British Chinese carers of patients with affective disorders, using a qualitative methodology to synthesise the sociocultural representations of illness within this community. Despite the small sample size, clear themes emerged from the narratives that were sufficient for this exploratory investigation. In general, carers’ understanding of the causes and symptoms of depression are largely aligned with traditional Chinese conceptions of health and disease. Some aspects of their responses were similar to previous findings in other minority ethnic groups. For instance, although British Chinese carers cited the accumulation of stress and negative emotions as an important cause of depressive symptoms, they frequently reported changes in patients’ emotional states, such as fatigue and loss of interest, as defining features of depression. These features are widespread among lay narratives of depression and support a universalist position toward the commonality of emotional expression (Fenton and Sadiq-Sangster 1996). And while the persistence of the relativist position in key aspects of mental illness, such as the construction of illness not as a medicalised (or even medicalisable) entity, has been argued, British Chinese carers were supportive of antidepressant medication despite their misgivings about its ‘poisonous’ interactions with ideas that are firmly in the tradition of Chinese medicine such as qi. This interaction between concepts arising from disparate frameworks of the character of the body and wellbeing, and what seemed to be an acceptable negotiation by carers between the two, may result from the role of carers in facilitating the interaction between Chinese patients and western providers.
Another example was the tendency for carers to consider and understand aspects of the illness outside this framework (for example, the patient’s presentation of physical symptoms) but then redirect their attention – and the doctor’s – to the patient’s emotional states, complicating reports that minority ethnic patients tend to somatise their symptoms (Mallinson and Popay 2007). The fluidity of switching between belief systems also appears to contradict patients’ views of their illness; in contrast to findings that Chinese patients prefer TCM to treat ‘weak nerves’, the carers believed that medication would be more effective in relieving symptoms and, by extension, the burden of the caring role. Could negotiating the intersection of two different contextualisations of mental illness serve as a mature coping strategy against engulfment, which is likely to be one of several methods tried by family carers (Atkin and Ahmad 2000)? How this negotiation occurs within the structural boundaries of informal care remains to be clarified.
British Chinese carers consistently cited the family unit as central to the social experience. Comments about keeping a diagnosis of depression at home, to close or bury it, reveal how carefully the boundary between home life and community life is maintained. Changes in family dynamics as a result of movement away from multi-generational families living together were blamed for isolating individuals whose vulnerability for depression was heightened by both nature (‘a personality problem’) and environment (‘that upsetting job’). For individuals in collectivist communities, a breakdown in social resources is likely to cause more injury than among majority British patients because the identity of the self is intimately, perhaps inextricably, tied to the continued existence and wellbeing of the group. Once the group is perceived to be gone, the loss of the individual may be inevitable (‘it’s over for me’); this may be especially true when fatalism heavily influences the group psyche.
Collectivism may also provide one explanation for the low use of support services among British Chinese carers. Current models of group support and therapy value open emotional expression and the empowerment of the carer to articulate individual concerns. This study suggests that poor support-group attendance might be attributed to the support group’s violation of social norms that reward the suppression of emotional stress in public and preclude transferring or surrendering one’s burden – especially related to caring, which is considered to be a private duty of the family – to community non-members. This was further developed in the conversations about the moral obligation of family caring. The carers explained their reluctance to accept outside support by visiting nurses, even when the former felt overwhelmed by their responsibilities, through a profound connection between the obligation to serve ill family members and essentialist ideals of being human and maintaining ‘social dignity’ for the patient and family. This raises an interesting issue: perhaps beyond the stigma of mental illness perceived from others and by the self, an additional shame associated with failing to fulfil an expectation within the prioritised family unit establishes a barrier to admitting the need for external support that is too high for most carers to overcome. As an ‘embodied moral practice’ (Chattoo and Ahmad 2008), the practice of caring among the British Chinese may require carers to maintain and sustain identities that are at once pious towards the family and sensitive to the community, further complicating their multiple roles.
This work was made possible by a research grant from Emmanuel College, University of Cambridge. The author wishes to thank the anonymous referees for their helpful comments on previous drafts of this article.