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Keywords:

  • Chinese culture;
  • context;
  • recovery;
  • user participation

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

Background

Patient or service user involvement in mental health services (MHS) is a hallmark of the recovery approach.

Objective

In this viewpoint article, we review Tambuyzer et al. paper ‘Patient involvement in mental health care: One size does not fit all’ in order to express our opinion of their work. We also suggest specific actions that may enhance the implementation of patient involvement in MHS.

Discussion

We make three main points about Tambuyzer et al. model. First, the cultural dimension of patient involvement seems underemphasized in the model. Second, the model might be improved if the increasing role of communications technology in patient involvement is taken into consideration. Third, it is important to acknowledge that the process of patient involvement is not linear, and participation is not a homogeneous experience.

Conclusions

We suggest that the model be expanded and that further work be carried out on the implementation of patient involvement in MHS.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

How has ‘patient involvement’ been defined over the last decade? What are the issues and controversies surrounding this health care imperative? The answers to these questions are of paramount importance to the mental health community, including individuals in recovery; their concerned significant others; and practitioners, researchers and policy planners, especially those who want to implement patient involvement in a meaningful way. An article by Tambuyzer, Pieters and Van Audenhove in the November 2011 edition of Health Expectations, ‘Patient involvement in mental health care: One size does not fit all’[1] (hereafter, ‘the PI article’), offers a comprehensive review of patient involvement. The purpose of this viewpoint article is twofold: to share our views on the PI article and to suggest further specific ways to implement patient involvement in mental health services (MHS). We are fortunate to have benefited from the very able contribution of AK, a research associate who has experience of using MHS.

Our response

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

The PI paper sets out a detailed model of the multidimensional and complex nature of patient involvement. This model is more sophisticated than earlier work on the ‘participation continuum’[2] and ‘participation ladder’[3] because it addresses a range of critical issues including methods and formalization. Building on the PI article's substantial contribution to knowledge, we offer our opinion of the model organized around the key concepts of culture, communication and caution.

Culture

It seems to us that the model proposed by Tambuyzer et al. does not account for the influence of cultural ideologies and beliefs, which can have an enormous impact on patient involvement. Social structures such as the mental health professional–patient relationship have existed for a long time within the context of MHS. For instance, each of the doctor–patient relationships involves a power relationship, whether real or perceived, that is often characterized by the possession of knowledge and resources. Added to this, already complex structure is the ethnic culture within which an individual lives and with which he or she interacts. As Chinese culture is not a homogeneous concept, we can only provide tentative suggestions as to how culture may influence people's understanding of patient involvement. Furthermore, Chinese culture and the concept of patient involvement will be interpreted differently in different communities. People in rural areas in mainland China, for example, where mental health resources are scarce and the shame and blame associated with mental illness prevail, are likely to have quite different ideas about these matters than New Zealand-born Chinese residing in downtown Auckland.

In Chinese culture, respect for authority is a deeply rooted and valued concept. Despite the ethnic diversity within Chinese culture, Confucianism and Taoism remain the dominant philosophies in Chinese societies.[4] Psychiatrists, service providers and professionals are often regarded as authority figures possessing power and knowledge. This respect for authority may thus maintain the hierarchy and the power of a health-specific social structure. The notion of fatalism is associated with the person's passive role as a ‘mental patient.’ Perceiving oneself to be in a powerless position can reduce one's motivation to participate in decision making. Furthermore, some Chinese people under the influence of traditional culture may interpret ‘advocacy’ and ‘empowerment’ as a challenge to deep-rooted Confucianism with its emphasis on self-sacrifice, suppressive harmony, benevolence and forgiveness. Similarly, from a Taoist understanding of mental health, the virtues of tolerance and endurance as a means of ensuring the fulfilment of the ‘Law of Nature’ may be preferred to the exercise of ‘self-determination’.[4, 5]

In collectivist cultures, such as Chinese culture, emphasis is placed on interdependence among family members and close kinfolk over and above the independence that is often promoted in Western cultures. A person with a mental health problem will expect him or herself to be cared for by the family. Family members normally share this expectation. Such reciprocal beliefs and expectations are different from those commonly found in Western cultures, where the emphasis is on psychosocial interventions to uncover individuals' strengths and help them to realize their own potential.[6] It is therefore worth evaluating how the role expectations of people with mental illness in a collectivist culture may influence their involvement in their own process of recovery and in the wider MHS.

Table 1 summarizes the key elements of patient involvement in Western and Chinese cultures. While we do not advocate a polarized view nor suggest that one cultural view is superior to another, we propose that patient involvement is a culturally bounded concept, which is interpreted differently across cultures, and that any model of participation needs to account for this dimension.

Table 1. Comparison of key elements of patient involvement between Western and Chinese culturea (see ref. [2-6, 16])
Elements of patient involvementWestern cultureChinese culture
  1. a

    Western and Chinese culture should not be treated as a homogeneous or polarized concept. The purpose of the table is to highlight that patient involvement is a culturally bounded concept, interpreted differently across cultures.

Practice context (such as the professional–patient relationship)

Consumerism, democratization

Values collaboration and partnership

Paternalistic, experts know best

Emphasis on respect for authority

Concept of self and dependencyDistinct, individualistic, emphasis on uniqueness and independencyConnected, relational, emphasis on interdependency and harmony
Relevant ideologies (such as self-determination)

One's rights and decision-making power considered as independent of views of family members/close kin

Belief in individual strengths and potential to overcome challenges for growth

Values views of family members and close kin and makes decisions in relation to significant others

Tendency to attribute events to fate and inclination towards a passive, powerless position

Information and communications technology

The PI article makes some important points about the difficulties (such as a lack of motivation and problems making decisions) people with mental health issues may experience in getting involved in MHS.[7] However, we believe that 21st century information and communications technology (ICT) applications (such as touch-screen electronic devices and 3G phones) and social networking sites (such as YouTube and Facebook) will create many more new and exciting platforms for patient participation and help overcome some of these difficulties. Moderated or structured social networking sites offer features such as the removal of geographical barriers and the promotion of user autonomy and control, all of which may enhance patient or user involvement.[8] Through Internet platforms seeing or hearing how someone else has successfully participated in MHS may highlight new possibilities, stimulating other service users' motivation and interest in becoming involved.[9] The ‘common ground’ site is a wonderful example of how ICT can be used to help patients to process a large volume of information gradually, contribute to making decisions about their own medications and enhance their involvement in MHS. It is a system developed by a service user[10] for service users. It combines Web-based software with the practice of peer specialists to support recovery and shared decision making in the prescribing of psychiatric medication.[10-12] However, electronic forms of communication also have the potential to cause harm to service users. Waldron et al. proposed guidelines for MHS professionals who are interested in developing online support groups or referring clients to existing Web-based peer support groups.[13] Other researchers have suggested that more attention should be paid to interpersonal communication rather than simply technology or the bare transmission of information; ICT, they argue, is supposed to enable human communication, not replace it.[14]

Caution

Facilitating patient involvement in MHS requires more hard work by all concerned and is a very complex process. With this in mind, we wish to end with two cautionary points. First, patient involvement is not a homogeneous experience. Not every patient chooses to participate or can be involved in MHS. Patient involvement also has a private and a public face. Although there are individuals who not only survive but thrive as patient advocates or peer specialists (or ‘peer mentors’, as they are commonly called in Australia and New Zealand) within MHS, others struggle in secret with the anxiety of not knowing how people might react if they were to disclose that they had personal experience of mental illness, as well as worry about how to maintain their wellness. Second, the boundary between ‘elements’ and ‘outcomes’ of patient involvement is not clear-cut (see the PI paper). In fact, these two concepts interact bi-directionally. Further work is urgently needed to identify the logic and mechanism of the ‘defining elements’ and ‘outcomes’ of patient involvement in the model proposed in the PI paper. For instance, light needs to be shed on the extent to which different outcomes of patient involvement may fit together and on whether some outcomes, such as empowerment and better health, can only be realized once others have been achieved.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

Developing recovery-oriented interventions in MHS is a policy goal for health services internationally and has been gathering momentum over the last three decades.[15] A wealth of literature suggests that patient involvement or user participation is the icon of the recovery approach or recovery-oriented MHS.[16-19] Tambuyzer et al. have made a valuable contribution by developing a model of patient involvement. We call for further research to validate its rhetoric and realities that pay particular attention to cultural and contextual dimensions and the use of ICT. According to the suggestions outlined in this paper, a key aspect of such work would be the use of a prospective research design to investigate how patient involvement is implemented in different settings and how individuals with a service user background take on this strenuous and satisfying challenge.

Source of funding

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

Preparation of this article did not receive any funding.

Conflict of interest

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References

There is no conflict of interest to declare with respect to the present manuscript submitted for publication.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Our response
  5. Conclusion
  6. Source of funding
  7. Conflict of interest
  8. References
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    Arnstein S. A ladder of public participation. Journal of American Institute of Planners, 1969; 35: 216224.
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    Yip KS. Traditional Chinese concepts of mental health: the implications for multi-cultural professional counselling practice. In: Phoon WO, Macindoe I (eds) Untangling the threads: perspectives on mental health in Chinese communities. Sydney: Transcultural Mental Health Centre, 2003: 1130.
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    Corrigan PW, Angell B, Davidson L et al. From adherence to self-determination: evolution of a treatment paradigm for people with serious mental illnesses. Psychiatric Services, 2012; 63: 169173.