Recovery in Hong Kong: Service user participation in mental health services

Abstract

This article provides an overview of mental health services (MHS) and the application of the recovery concept in Hong Kong, focusing on user participation. It presents stakeholders’ views of the recovery movement in a round-table discussion format, demonstrating agreement that user participation merits more public and official attention. Some of the present difficulties with the movement are also reviewed. Social identity theory (SIT) is then analysed as a potentially useful framework for theorizing how service users’ identities change as they become service providers. The paper then provides an overview of the current financial and political position of MHS, and identifies signs that the recovery approach is becoming accepted. It also addresses the cultural meanings of the concept, and sets out examples of its implementation in the health and social welfare sectors. Lastly, it summarizes the challenges facing service providers and users and concludes that as the recovery movement is still in its infancy in Hong Kong, more coordinated efforts are needed to establish the organizational support and policy framework, so that sustainable and evidence-based service provision can be achieved.

Introduction

Over the past two decades, the recovery movement in the West has sought to empower service users to increase their participation in mental health services (MHS) (Anthony et al., 2003; Burgess et al., 2010; Fukui et al., 2010). The present authors view such participation as the hallmark of modern recovery-orientated services (Tse et al., 2011). This paper provides an overview of MHS and the application of the recovery concept, focusing on user participation (for further details on user participation, see Elstad & Eide, 2009; Hickey & Kipping, 1998; Leung, 2011). It has two main aims. Firstly, to make a contribution to the international discourse on recovery, and in particular to share the journey on which Hong Kong has embarked, and secondly, to stimulate discussion among service users, family members, practitioners, and policymakers about how to advance user participation in Hong Kong.

Round-table discussion

As part of the development of this manuscript, the authors interviewed a service user, family member and mental health worker. Their contributions were synthesized into the following ‘virtual round-table discussion’ which offers a snapshot of the development of user participation in Hong Kong from a front-line service perspective and illustrates the views of different stakeholders.

What is special about user participation in MHS?

Family member (female, 46 years old, her daughter is in recovery from bipolar disorder): ‘The service user has a unique experience, and a better understanding of things like how medication makes you feel, and what it's actually like to have the illness. A family member could never understand this. For example, I don't understand why my daughter always refuses to take her medication and how bad the side effects are.’

Service user (male, 38 years old, was diagnosed with schizophrenia 16 years ago): ‘Through personal experience, we know that self-help and peer support is particularly important to a person recovering from mental illness. I think services should acknowledge the momentum of the self-help and peer support movement in Hong Kong, involve users in service planning, educate people about the systems of service provision, and facilitate our lobbying for improvements in government policy.’

Mental health worker: ‘I agree. It is important to explore and channel service users’ potential, skills, and talents to help with appropriate activities within MHS; in turn, they gain a sense of achievement and have the chance to consider whether or not they might like to do similar jobs in future.’

How is user participation being developed in Hong Kong?

Family member: ‘I didn't realize user participation existed in Hong Kong. I had never heard of it until now.’

Service user: ‘I believe that the needs, wishes, and interests of service users should be catered for by MHS and non-governmental organizations (NGOs).’

Family member: ‘Yes, this idea should be promoted more.’

Mental health worker: ‘If you think about user participation as a form of peer support, it has always been there. It is nothing new. There has always been a spirit of informal peer support and sharing among people recovering from mental illness. They organize hospital visits; go to karaoke, soccer, or Yam Char (a Chinese restaurant); and attend fairs together. Clients are particularly good at picking up on the emotional rollercoaster others are experiencing.’

Service user: ‘I agree. That does happen.’

Mental health worker: ‘Recently in Hong Kong, several celebrities have come out of the closet to talk about their experience of mental health problems and how they have recovered. These celebrities are very brave to present themselves before the camera without having their identities masked. This kind of publicity sends a strong message, not only that people can and do recover, but also that negative public attitudes towards mental illness need to change. More of this kind of sharing will help overcome the stigma associated with mental illness.’

Service user: ‘The more people talk about their recovery, the more confident they become. Perhaps unintentionally, we will turn out to be the best ambassadors to fight the stigma.’

Mental health worker: ‘I couldn't agree more! These celebrity recovery stories bring hope and power to people who are recovering. They should be promoted vigorously, on TV and in print, and information displayed at public libraries, sports centres, and on the streets.’

What are the challenges faced by MHS in promoting user participation in Hong Kong?

Service user: ‘There are two main obstacles. Firstly, the so-called “recovery movement” is being taken over by professionals, which may be counter-productive as far as self-help and user participation are concerned. Secondly, what I would call ‘bureaucratic oppression’ is taking place; this stems from the effect of government policy in limiting innovative ideas, creative thinking, and alternative approaches to mental health.’

Mental health worker: ‘I don't disagree with that. Hong Kong is not a fully democratic society, and we don't have a lot of experience of participating in social movements. Service users are no exception. User-led organizations need time to mature and gain influence with policymakers and funders. The big challenge for a person who takes up the role of peer specialist or support worker is the immediate loss of privacy. The personal experience of having had mental illness is suddenly exposed in public, which may attract undesirable attention such as stigma and labelling. This affects not only the individual but also those around him/her.’

Service user: ‘The main concern someone taking up a peer support worker's role in a MHS tends to have is the clarity of role boundaries, which is a prerequisite for effective working relationships. Ongoing supervision and support is also critical. Workers may get over-involved with clients’ problems because of their own experiences. Peer workers sometimes find it hard to work alongside health professionals as they may be intimidated by their power − real or perceived. Apart from anything else, using helping skills and principles in the peer support approach, especially as a paid worker, is a new and challenging concept. It needs to be explored and learned by both clients and supervisors. We should test out the strengths and limitations of this approach; for example, we could ask whether it is effective for both compliant and complainant clients; what happens to individuals with personality disorders or “hardcore” cases such as people with paranoia or who lack insight into their illness; and explore whether peer support workers are really capable of handling cases which go beyond their own personal experience.’

Family member: ‘I would have no worries about a service user becoming a MHS worker. Service users can work well with health professionals.’

Mental health worker: ‘That's great to know. I think the selection and recruitment of service user for paid positions has to be fair, equitable, and transparent. Hiring decisions must be based on merit, and match the applicant's skills and talents with the requirements of the position.’

Service user: ‘I also want to add that nowadays users are invited to sit on committees. My main concern is whether they are ready to participate effectively. I feel strongly that professionals are obliged to educate users and equip them to undertake committee work and participate in meetings. The agency or service needs to make a genuine commitment to involving users in service planning, so that participation doesn't become a token gesture.’

Who are ‘service users’?

There is little consensus on terminology or definitions (Doughty & Tse, 2004). The terms service user (popular in the UK and Europe), consumer (in the US), tangata whaiora, a New Zealand term denoting a person seeking well-being (O’Hagan, this issue), and psychiatric survivor are all used in the literature, acknowledging the fact that there is a wide variation in how individuals with personal experience of mental illness prefer to be addressed (Mueser et al., 1996; Doughty & Tse, 2011). Some advocates are sceptical of the term consumer, because it implies choices and power, when frequently this is not the case. For the purposes of this paper, we define service user as an individual with personal experience of mental illness who has been a user of MHS and who identifies as such.

User participation can be enacted in many ways in user-partnership, user-run or user-operated services; these are services designed, operated, and evaluated by service users based on their own defined needs, although non-users or professionals may still be involved (Rowland et al., 1993; Solomon & Draine, 2001). Such services may be categorized (Adams, this issue; Simpson & House, 2002) as: 1) provider in traditional MHS (for example, case manager, advocate, support worker, or peer specialist); 2) provider of independent MHS (such as peer support or information/advocacy services); 3) trainer (of groups such as MHS providers, students, and caregivers); 4) researcher, auditor, or assessor of MHS; and 5) public policy adviser.

Service users and social identity theory

Sociological theory helps us to appreciate the complexity of the transition from being a person with acute mental symptoms, to service user, to service provider. To date, little research has looked at the social identity of people with mental illness, let alone this specific set of transitions. However, social identity theory (SIT), originally proposed by Tajfel and Turner (1979), is a helpful theoretical framework that is often used to explain the relationship between social context and individuals’ intergroup behaviours, attitudes, and beliefs. The central idea is that social identity is constructed on the basis of the group to which one belongs. Its initial establishment and construction depends on how strongly one identifies with the group (Brown, 2000). Once a person has so identified, he/she begins to construct the meanings of membership by identifying his/her status within the group, and contrasting and comparing his/her values and beliefs with other groups. This is sometimes referred to as finding ‘positive distinctiveness’ (Tajfel, 1981), and may also lead to what is referred to as ‘in-group favouritism’ (the perception that one's group is superior to others of the same kind). Social identity is best understood in relation to personal identity, or the evaluation and conceptualization of the self based on one's unique attributes and characteristics.

Specific challenges

In SIT terms, three common challenges arise when a person becomes a service user and/or part of the MHS (e.g. peer support worker, member of policy advisory group). Firstly, in any specific group, the distinctiveness and saliency of one's social identity depends heavily on health status and self-perceived well-being in comparison to other groups (Haslem et al., 2009). Being in a ‘MHS users’ group may have a negative impact on identity if membership is seen as linked to being mentally unwell rather than someone with a sense of hope and an array of personal strengths. Accordingly, whether or not it is desirable to self-identify as a service user depends on how one views that group (Haslem et al., 2009; Jackson et al., 2009).

Secondly, when applying SIT to the process of becoming mentally ill, there is a shift from being part of the ‘healthy majority’ (that is, powerful) to the ‘sick minority’ (less powerful) (Tajfel & Turner, 1979). For example, a person may formerly have identified as an educator and been a member of a professional group; after admission to a mental health facility, he/she may shift from this majority group (educators) to the minority (patients) as this new context becomes more salient. The opposite can also happen. A person might see him/herself as powerless and sick, but after obtaining a paid position in a MHS, may shift to regaining a healthy role and assimilating the institutional power of the workplace. One may also ask how such a peer specialist will exercise this newly given power; how will colleagues view this transition; and how will he/she be viewed by the local user community after becoming part of the bureaucracy?

Thirdly, a major challenge following a change in social identity is ‘remooring’ or ‘psychological footing,’ which is often associated with stress (Haslem et al., 2009). This is soon offset if the individual successfully regains his/her footing in the new social identity. In the case of someone who has shifted from service user to provider, the journey can be either empowering or a source of tremendous stress, which may eventually have an adverse effect on mental health.

Mental health systems in Hong Kong

Hong Kong is one of the most densely populated cities in the world. It has a population of 7 million people. As a former British colony, Hong Kong is a developed capitalist economy, with a gross domestic product (GDP) of US$301.6 billion (2009). About 5.5% of GDP is spent on healthcare and about 0.24% of GDP on mental health (WHO, 2005). Historically, mental health has not been a priority, with meagre resources being allocated to it. In terms of provision, the current psychiatrist-to-population ratio is 1:25,271, which is significantly lower than most other developed countries (Hong Kong College of Psychiatrists, 2005; WHO, 2005).

Mental health policy and legislation

There is no mental health policy as such in Hong Kong. Instead, the development of MHS is subsumed under the health service, as directed by the government's Food and Health Bureau. The lack of a coherent policy has resulted in poor coordination between the medical sector, which provides assessment and treatment, and the social welfare sector, which delivers rehabilitation and community-based support (Hong Kong College of Psychiatrists, 2005). There is a specific law covering mental health, which has been in place since 1906 with several subsequent revisions (Cheung, 2000; Lo, 1988); this covers many aspects of the management and treatment of patients but does not provide for community treatment orders, unlike the equivalent legislation in most western countries.

Delivery of MHS

MHS in Hong Kong are delivered under a mixed system and are largely hospital based. The private sector is relatively small, with most provision from the public sector through two stand-alone mental hospitals and five psychiatric units, managed by the Hospital Authority (HA), a statutory body. Public MHS provide a comprehensive range of services, including all subspecialties, using a secondary and tertiary care model. Until recently, most of the available resources have been focused on inpatient and outpatient services, with a relatively underdeveloped community aspect.

A typical inpatient environment in Hong Kong is institutional, to ensure the efficient management of large numbers; the total number of inpatients treated in 2008–2009 was 15,887 (HA, 2011). A typical outpatient clinic is characterized by long waiting lists and short consultation times, as the total number of patients continues to rise; for example, the total grew by 19% between 2003 and 2009, culminating in a total of 151,259 outpatients in the public system by 2009 (HA, 2011).

Recognizing the increasing demand, the HA has launched a number of small-scale reform initiatives and pilot programmes since the early 2000s, such as Cheung et al., (2010): 1) an early intervention programme for young people experiencing first-episode psychosis; 2) the gradual downsizing of two large hospitals, resulting in the loss of around 700 inpatient beds over six years; 3) funding for new psychiatric drugs; 4) the development and enhancement of community psychiatric services; and 5) an old-age community psychiatric service including outreach to rest homes and aged-care institutions, and a suicide prevention programme.

Although effective in their own right, the overall impact of these initiatives has been limited given their scale and scope. After intensive lobbying in 2007, the government agreed to commit substantial resources in 2010 to two key areas: 1) implementing multidisciplinary case management to care for individuals with severe mental illness in the community (Cheung et al., 2010) and 2) allocating resources to developing a shared-care approach to common mental disorders, in partnership with primary care practitioners. The HA also published a Mental Health Service Plan for Adults outlining the future strategic direction of MHS and outlining further initiatives.

Implementing the recovery approach in Hong Kong

The development of MHS in Hong Kong has traditionally been provider-focused, but there are indications that they are gradually taking up the concept of recovery. Most notably, the Mental Health Service Plan for Adults states that ‘The vision of the future is of a person-centred service based on effective treatment and the recovery of the individual’ (HA, 2011, p. 5). Such language might sound familiar to western professionals, but is seen as a great leap forward in Hong Kong. However, service users, practitioners, and researchers should be cautious; there needs to be due consideration of contextual factors such as history, culture and good practice, and systemic constraints if the recovery approach is to take root in Hong Kong.

The present authors define recovery as the process and outcomes by and in which a person affected by mental illness regains his/her level of functioning (‘being’), sense of hope for the future (‘becoming’), and connection with oneself and others (‘belonging’). Process and outcome are not linked in a simple, linear fashion; nor should they be seen as opposite ends of a spectrum, but rather as concepts which mutually interact as recovery unfolds. Recovery must be initiated, driven, and experienced by the individual, but professionals and services can provide a facilitative environment.

To date, there is no official translation for the term recovery, nor has there been a cultural discourse on the concept within the Chinese communities in Hong Kong. One popular translation is (fu yuan), a colloquial phrase found in the ancient Chinese text Yi-jing (V. Cheng, personal communication, 29 September 2011). Yuan denotes the primordial qi, meaning energy, vitality, or life force, so recovery means ‘regaining vitality and life force’. Another translation is (fu yuan), or restoration to an original state, and a third, although colloquial, is (fu yuan) which suggests the broader idea of regaining fullness and completeness. Although all three have the same English phonic, they differ in nuance. Critics suggest that recovering patients are rarely restored to their original state, nor reach completeness; some may be transformed to a better way of life, whereas others have ongoing health issues.

In Hong Kong, 95% of the 7 million residents are Chinese and 5% are from other ethnic origins. Thus it is worth examining how different cultural groups may perceive recovery. Table I summarizes the major differences (Markus et al., 1997; Perkin, this issue; Slade, this issue, Editorial; Sun, 2008; Tse et al., 2010; Yip, 2004).

Table I. Western and eastern cultural views of the recovery concept.

Dimensions of recovery concept	Western, individualistic culture (such as the USA, Australia)	Eastern, collectivist culture (such as China, Japan, South Asia)
1. Concept of self	Separate	Connected
2. Recovery aspirations	• Seek to be independent	• Seek to be independent, regain harmony within the systems, such as family, in the neighbourhood
	• Emphasis on uniqueness	• Emphasis on group membership and similarities to others (such as asking ‘How do I compare with the person next door?’)
3. Recovery occurs in a social and political context: civil and human rights	Commonly debated in literature and in practice	An emerging concept, relatively new experience
4. Personal qualities sought	Individual successes transcend specific situations and relationships	Are flexible, relative to different social contexts
5. How strengths are defined	See oneself as above average	Tend to be self-critical, often unaware of one's own talents and qualities

There are three important caveats. First, it is overly simplistic to view western and eastern cultures as polarized (Lawrence et al., 2010). There will always be exceptions; some western people think and behave in an eastern way, and vice versa. Secondly, although Asian or European people are often seen as a single ethnic group, they are not culturally homogenous. Members will vary in exposure, experience, social background, and geographical settings (rural or urban), all of which influence their values, beliefs, and worldview. Thirdly, one cultural view is by no means superior to another, and no such suggestion is made; the point is to highlight that recovery is a culturally bounded concept, interpreted differently across cultures.

The sections below outline examples of the implementation of the recovery concept in health and social welfare sectors; services delivery and research in this area are still evolving.

Health sector

As acute psychiatric care is provided mainly in hospitals or regional inpatient units, its philosophy is still heavily based on the medical model, such as symptomatic and syndromal recovery (Judd et al., 2003; Tohen et al., 2000). Genuine recovery-based practices are only found in community care settings.

For example, two regional psychiatric units (in the Queen Mary and Kowloon Hospitals) have set up clubhouses in which users play active roles. Both were set up using the Fountain Clubhouse Model and are closely affiliated with the International Consortium of Clubhouse Development (Macias et al., 1999). Furthermore, in Kowloon Hospital, service users serve, on rotation, as representative members of the management committee of the psychiatric rehabilitation team. In addition, with the support of that team, the inpatient and outpatient departments work together in a volunteer service user group called (denoting peers coalesce together to give out beams of hope and light to other service users), whose purpose is to bring providers and users together to provide public education and deliver the unit's programmes. With Castle Peak Hospital, the oldest psychiatric institution in Hong Kong, Kowloon has also sought funding to recruit additional peer specialists, as part of the expansion of user-led clinical services. These changes are welcome. However, a formal, territory-wide, sustained strategy for incorporating service user and caregiver feedback in the design, implementation, and evaluation of services is yet to be established.

Furthermore, as part of the Implementation Task Force of the Mental Health Service Plan for Adults (2010–2015), a new user group is to be assembled to collect input to strategic and policy planning (p. 11). It will consist of nominated representatives from service user and caregiver groups, and NGOs serving people with mental health problems. This is the first consultation the HA has initiated that specifically targets MHS users and caregivers, with the aim of collecting their feedback and opinions to inform service planning. Each regional health cluster will also be required to set up its own users and caregivers forum to collect feedback, and to report back to the top decision-making body within the HA to inform future service planning. In order to facilitate face-to-face discussion between top management and service users, a regular, open public forum will also be set up in the HA head office.

Social sector

In Hong Kong, there are, broadly speaking, three levels of user involvement in social service NGOs. In the first, users are heavily involved in providing feedback about services they receive. A mechanism for gathering such feedback via a satisfaction survey is built into the Service Quality Standards which form part of the official monitoring and evaluation scheme for NGOs. This kind of involvement is recognized and highly valued by social service professionals.

In the second, the user plays an active role in self-help groups, most of which are sponsored and operated by individual NGOs. These are normally quite informal, bringing together people with various diagnoses or at different stages of recovery. The groups are facilitated by a social worker together with individuals in recovery, and usually employ the psychosocial rehabilitation model that helps users to learn how to cope and live with the experience of mental illness. With the gradual development of user participation in Hong Kong, some of these groups are evolving to include users as role models or educators in community mental health promotion. Some users also work as trainers for caregivers and professionals, or provide input to the design of surveys or other research. Furthermore, some self-help groups have a very strong expressive component, using a variety of media (such as painting, sculpture, photography, and song-writing) to describe members’ recovery experiences.

A third level engages users in peer-run or peer-operated organizations, as defined earlier. To date, four such organizations have registered with the Hong Kong authorities, and receive official funding to employ staff to provide services such as drop-in peer support (face-to-face or by telephone). These organizations also play a strong advocacy role, lobbying government departments, legislative bodies, and politicians around issues such as access to new medication, availability of night clinics, protection of personal data, equal opportunities, and preventing discrimination.

Moving forward: Opportunities and challenges

In the USA, the Yale Program for Recovery and Community Health advocates ‘Nothing about us (users) without us’. Furthermore, user participation is intrinsically grounded in recovery (Orwin, 2008). It is therefore pivotal to ensure ‘what is being promoted is real recovery and empowerment’ (NECRC, 2007, p. 50), that is, the opportunity for people to make decisions and control their own lives. Although the Hong Kong NGOs and the health sector realize the importance of sustainable user participation through systemic transformation, service providers and users still face several issues, as outlined below.

Professionalizing recovery and ‘peerness’

There is a concern that training should be minimal so that the ‘peerness’ of the relationship is retained (Dennis, 2003). Two difficulties arise over the standardization of peer support training and service provision. Firstly, it may guide workers to adopt the language and approach of mainstream services rather than enabling them, as a group, to develop their own culture and style. Secondly, the Hong Kong user community already takes the view that the local recovery movement, unlike in western countries (Perkin, this issue; Piat, this issue), is led by professionals with limited input from them. Adopting a standardized approach to training may signal a further erosion of the original spirit and authenticity of the recovery concept.

Evidence-based versus value-based services

To date, there has been no systematic study of user involvement in mental healthcare in Hong Kong, and the evidence base is patchy. Peer-run organizations promoting participation are seen primarily as value-based services which embrace the principles of empowerment, choice, respect, dignity, social action, and peer-based support (Van Tosh & del Vecchio, 2000). Unanswered questions remain over the evidence base, the link between such values and objectively measured clinical outcomes, and the perceptions of other stakeholders. Much depends on the local service culture and top management's perceptions of the benefits and feasibility of user involvement.

Lack of funding

Although the evidence shows that community care leads to improved clinical outcomes (Thornicroft et al., 2011) without increasing the risk of violence, it is essential to ring-fence the funding released by hospital closures to develop it (Leff, 1998). The absence of strong leadership, a coherent policy framework (Perkins, this issue), or a commitment to ring-fencing are the critical challenges facing MHS in Hong Kong; funding pressures also raise issues such as retention of peer support workers and barriers to accessing training.

Workplace transformation

In Hong Kong, views on paying peer support workers differ. Some feel it destroys the altruistic nature of peer support, while others suggest it gives workers a higher status than peers or volunteers. Furthermore, the use of peer workers in traditional services leads to cultural change. Compared to other countries (O’Hagan, this issue; Slade, this issue, Editorial), Hong Kong is just beginning this transformation, so in-service training and educational opportunities must be provided to improve knowledge of recovery (Mak et al., 2010). A recent study conducted in a regional psychiatric unit in Hong Kong found that staff members were sceptical of the abilities of peer specialists in service delivery and training. They were also concerned about the risk of relapse triggered by expectations and responsibility (Ng et al., 2010). Traditional medical paternalism reinforces a conventional view of recovery as the complete cessation of medication and total freedom from daily stressors, thereby impeding the adoption of social recovery as a guiding principle of care (Ng et al., 2008).

Conclusion

Evidence gathered elsewhere shows that a number of success factors contribute to the sustainability of user participation in mainstream organizations and NGOs (NECRC, 2007). These include the importance of retaining the core values and unique features of user participation; the enthusiasm and commitment of professional staff; organizational support for user involvement; supportive and transparent human resource practices; users’ own understanding of ethics and boundaries; peer-led evaluation of service delivery; and most important of all, the absence of tokenism.

One of the present authors has some experience of rolling out user participation in his unit. His view is that it is necessary to identify the ‘innovators’ in the department, then to involve them in piloting the programme and sharing their experience with ‘onlookers and followers’. Sharing the joys and sorrows of recovery-based practice with more reserved colleagues in staff meetings allows both supporters and critics to probe its applicability to their own work. Criticism and scepticism are not viewed as resistance but as constructive feedback. In a culturally entrenched organization, the key to success in engaging users in service provision and rolling out recovery-orientated practice is to take small steps and facilitate mini experiments. The development of user participation has only just begun to gather momentum in Hong Kong. More effort is needed to build an infrastructure and policy framework which will sustain its development.

Declaration of interest: Eric Cheung and Roger Ng are employed by the Hospital Authority (HA). Sania Yau serves as the chief executive officer of the New Life Psychiatric Rehabilitation Association (NLPRA). Alice Kan and Samson Tse are associated with the University of Hong Kong. The views expressed in this publication are those of the authors and not necessarily those of the HA, NLPRA or the University. The authors alone are responsible for the content and writing of the paper.