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Early Intervention in Psychiatry 2015; ••: ••–••

doi:10.1111/eip.12232

Original Article Chinese label for people at risk for psychosis Edwin H.M. Lee,1 Elaine Y.N. Ching,1 Christy L.M. Hui,1 Jessie J.X. Lin,1 W.C. Chang,1 Sherry K.W. Chan1 and Eric Y.H. Chen1,2 Abstract 1 Department of Psychiatry, Queen Mary Hospital, 2State Key Laboratory of Brain and Cognitive Sciences, The University of Hong Kong, Hong Kong

Corresponding author: Dr Edwin H.M. Lee, Department of Psychiatry, Queen Mary Hospital, The University of Hong Kong, 102 Pokfulam Road, Hong Kong. Email: [email protected] Received 6 August 2014; accepted 23 January 2015 Declaration of conflict of interest Edwin HM Lee has participated in paid advisory board for AstraZeneca, Eli Lilly and Janssen-Cilag. Eric YH Chen has participated in paid advisory board for Otsuka, has received educational grant support from Janssen-Cilag, and has received research funding from AstraZeneca, Janssen-Cilag, Pfizer, Eli Lilly, Sanofi-Aventis and Otsuka. All other authors declare that they do not have any conflicts of interest.

Aim: With the movement of early detection and intervention for people at risk for psychosis, there is a growing need for a uniform terminology to describe the condition. A diagnostic label that can adapt into local culture and value may have positive effect in minimizing stigma. This study explored the preference of Chinese label for people at risk of psychosis and its associated stigma in Hong Kong. Methods: A total of 149 individuals from the general public and 51 health-care professionals were recruited between March 2013 and May 2014. The condition of at risk for psychosis was described in a vignette. Participants’ preference of label and perceived stigma of the condition

Results: The most preferred Chinese label was ‘yun-niang-qi’ (developing period, 45%), followed by ‘qian-qu-qi’ (precursor period, 19%), ‘feng-xianqi’ (risky period, 18%), ‘zao-xian-qi’ (early sign period, 16%) and ‘gao-weiqi’ (high risk period, 4%). Gender, age, occupation and previous contact with mental health were not associated with preference of any Chinese label. Conclusions: The process in searching for this potential and locally accepted label for people at risk for psychosis has raised the awareness among the professionals. A proper label may help promote future clinical research and mental health services in Hong Kong.

Key words: labelling, prodrome, psychosis, stigma, ultra-high risk.

INTRODUCTION Schizophrenia was coined over 100 years ago by Eugen Bleuler using the Greek terms of ‘schizo’ (split) and ‘phrene’ (mind). Since then, the label has been used widely and people have treated it as an equivalent of severe mental illness. The stigma associated with the label has an adverse effect on early detection, treatment and recovery, particularly in countries where stigma is an important concern among patients and their family. In the recent decade, the change of label has been proposed in several Asian countries. In Japan, ‘Togo-Shitcho-Sho’ (integrated disorder) has replaced the original label ‘Seishin-Bunretsu-Byo’ (mind-split disease) since 2002.1 In Korea, ‘Johyun-byung’ (attunement disorder) has been used to replace ‘Jeongshin-bunyeolbyung’ (mind-splitted disorder) since 2012.2 In Hong Kong, a symptom-focused label ‘Si-JueShi-Tiao’, representing dysfunction of thought and © 2015 Wiley Publishing Asia Pty Ltd

and their basic demographics were collected by self-administered questionnaires.

perception, has been used, instead of the original name representing ‘splitting of the mind’ since 2001.3,4 Taiwan has also adopted a similar change in the Chinese label of the disorder in late 2012.5 The shift towards early intervention brings about a new wave of interest in finding interventions to prevent psychosis in people at risk for psychosis.6–11 In English-speaking countries, various names including ‘ultra-high risk’, ‘clinical high risk’, ‘at-risk mental state’ and ‘prodrome’ have been used to describe an individual at risk for psychosis.12 The stigma associated with the label of being at risk for psychosis is one of the major concerns in the consideration of including ‘Attenuated Psychosis Syndrome’ as a diagnosis of the latest Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5).13,14 Appropriate diagnostic label can be helpful for the public to understand the condition and possibly increase public awareness and minimize stigma towards the affected individuals.15,16 1

Chinese label for at risk for psychosis To date, there is no common label for this condition in Chinese-speaking countries, including Hong Kong. Our study aimed to explore the preference of these Chinese labels in the general public and in the health-care professionals, and also to examine the perceived stigma associated with each of these labels. METHODS Participants We have recruited 200 participants from the general public and health-care professionals between March 2013 and May 2014 in Hong Kong. Participants were recruited via the University of Hong Kong’s electronic mail network or the public awareness exhibition. Chinese individuals aged 18 and above, who were never diagnosed and treated for mental disorder, and gave written informed consent, were included in the study. Basic demographic information including age, gender and educational level was collected by a self-administered questionnaire. Previous contact with mental health services was also recorded based on questions adapted from Alexander and Link.17 Preference and the perceived stigma for the Chinese label were assessed.

a Likert scale (1 = strongly agree to 6 = strongly disagree), of which half uses reverse coding. Scores are adjusted by collapsing ratings of slightly agree with agree, and slightly disagree with disagree to produce a scale that varies from 1 to 4 for easy comparison with other studies.21 Sum scores of all items are then divided by the number of items to produce the final total adjusted score. Devaluation scores are obtained by summing five items and divided by 5, whereas discrimination scores are the result of the sum of the remaining seven items divided by 7. Higher scores indicate stronger perception of devaluationdiscrimination. Participants used this scale to rate a character diagnosed with their chosen label. Statistical analysis Statistical analyses were carried out using the Statistical Package for Social Sciences (SPSS) version 20.0. All tests were performed two tailed with a significance level of P < 0.05. The Kolmogorov–Smirnov test was used to test for normality of noncategorical variables (PDD scores). Chi-squared or Mann–Whitney U-tests were conducted to examine differences between different demographic groups in the naming preferences. Kruskal–Wallis test was employed to explore the differences between Chinese labels on PDD scores.

Measures

RESULTS

Chinese labels

Preference of labels

Five Chinese terms were generated by four local psychiatrists and were presented along with a vignette (Appendix I) to describe the condition of at risk for psychosis to the group of participants consisting of health-care professionals and laypeople. These terms were ‘yun-niang-qi’ (醞釀期) denoting developing period; ‘qian-qu-qi’ (前驅期) denoting precursor period; ‘zao-xian-qi’ (早顯期) denoting early sign period; ‘feng-xian-qi’ (風險期) denoting risky period; and ‘gao-wei-qi’ (高危期) denoting high risk period. Participants were asked to choose their preferred label for the condition after reading the vignette.

A total of 200 questionnaires were collected, with 51 from health-care professionals and 149 from the general public. The population had a mean age of 27.2 years (SD 9.8, range 18–59). Basic demographic distributions of gender, education level and contact with mental health were shown in Table 1. Both participant groups were predominately female, but mental health professionals had on average a higher educational level and more contact with mental health. We found that the most preferred Chinese label was yun-niang-qi (developing period) with 89 (45%) votes, followed by qian-qu-qi (precursor period) with 37 (19%) votes, feng-xian-qi (risky period) with 36 (18%) votes, zao-xian-qi (early sign period) with 31 (16%) votes and least preferred gao-wei-qi (high risk period) with 7 (4%) votes (Table 2).

Perceived Discrimination-Devaluation Scale (PDD) This scale was chosen to measure perceived stigma in both the dimensions of devaluation and discrimination. Although it is often used in mentally ill populations, it can also be administered to the general public for their perception of what most people think about the mentally ill.18 This is a commonly used 12-item self-administered questionnaire adopted from Link19,20 with scores of each item from 1 to 6 on 2

Association of demographic variables and stigma with different labels There was no significant difference in the label preference between the general public and the © 2015 Wiley Publishing Asia Pty Ltd

E. H. M. Lee et al. TABLE 1. Demographic characteristics Characteristics

Age Gender Male Female Education level Secondary Diploma Undergraduate degree Postgraduate degree Worked/volunteered in mental health Work Volunteer No

Public n = 149

MHP† n = 51

Total n (%)/mean (SD)

27.0 (10.0)

27.7 (9.2)

27.2 (9.8)

38 (26) 111 (74)

20 (39) 31 (61)

58 (29) 142 (71)

17 (11) 51 (34) 43 (29) 38 (26)

– 1 (2) 36 (71) 14 (27)

17 (9) 52 (26) 79 (40) 51 (26)

13 (9) 31 (20) 105 (71)

37 (73) 5 (9) 9 (18)

50 (25) 36 (18) 114 (57)

†Mental health professionals consist of 4 psychiatrists, 4 psychiatric nurses, 3 mental health social workers, 1 counsellor, 21 mental health researchers or intervention officers, and 18 other unspecified mental health professionals.

health-care professionals. Other basic demographic variables including age, gender, education level and contact with mental health were also not associated with preference for the choice of Chinese labels. Table 3 shows the PDD total and devaluation and discrimination sub-scores. No statistical differences were observed in PDD scores between different labels. DISCUSSION This is the first study carried out in the Chinese population to explore the general public and healthcare professionals’ preference of Chinese label for people at risk for psychosis. The process itself in searching for a useful and culturally acceptable Chinese term has raised an intense discussion among mental health professionals in Hong Kong. The data generated from this study are directly applicable for use among the professionals and lay public in clinic setting, as well as future public awareness programmes. We found that most of the participants preferred the label ‘yun-niang-qi’ (developing period). The uniform preference among the public and the mental health professionals has high relevancy for both mental health services and clinical research, as it reflects a general liking and wanting for a term to include the uncertainty and potential reversibility of the condition. This neutral, non-judgmental label may also facilitate people at risk for psychosis and © 2015 Wiley Publishing Asia Pty Ltd

their family members to seek help, especially in Chinese culture which parents are concerned about the labelling effect on their children.22 In contrast, the labels ‘qian-qu-qi’ (precursor period) and ‘zaoxian-qi’ (early sign period) emphasized too much on the initial period of the condition which may imply psychosis is inevitable. Likewise, the label ‘feng-xian-qi’ (risky period) refers to the initial risk of developing the illness. On the other hand, the label ‘gao-wei-qi’ (high risk period) overemphasized on the dangerousness of transition to psychosis, and is therefore less preferred by the study population. Interestingly, the diagnostic label of ‘yun-niangqi’ (developing period) was favoured irrespective of the participants’ gender, age, education level, occupation and previous contact with mental health services. This initial promise in general public acceptance of this label for people at risk for psychosis represents an important first step for the public to adopt and utilize, such that further efforts in public awareness and early detection can then be carried out. Consistently, the same Chinese term will also be proposed to the media for use when communicating with the public, hoping to minimize misuse of terms which may hinder public awareness efforts. We have also found that the PDD scores did not differ between different labels, although we postulated that the preferred labels would have a different perceived stigma when compared to other labels. This may be because of the effect of prior impression from the vignette (Appendix I), which describes the condition and its risks. Thus, participants may have carried over this impression and rated the perceived stigma according to the vignette rather than the diagnostic label itself. Moreover, participants only rated their preferred label, which makes it difficult to reliably compare stigma ratings between labels. Another possible reason is that the difference is in other stigma domains apart from the devaluation and discrimination aspects. This study has several methodological limitations. First, this is a cross-sectional quantitative study, in which the in-depth exploration of the preference of labels and the associated stigma of each will require future qualitative investigation. Appropriate translations of the proposed Chinese label must also be considered. This study’s most preferred label, ‘incubation period’, refers to the period of exposure to infection which may appear inappropriate for the condition of prodrome. Other wordings such as brewing or preparation can be considered. Second, other domains of stigma apart from devaluation and discrimination were not 3

Chinese label for at risk for psychosis TABLE 2. Distribution of label preferences

Overall Participant group Public Professional Gender Male Female Education level Secondary Diploma Undergraduate degree Postgraduate degree Worked/volunteered in mental health Work Volunteer No

醞釀期 Developing period (%)

前驅期 Precursor period (%)

早顯期 Early sign period (%)

風險期 Risky period (%)

高危期 High risk period (%)

89 (45)

37 (19)

31 (16)

36 (18)

7 (4)

73 (49) 16 (31)

22 (15) 15 (29)

24 (16) 7 (14)

24 (16) 12 (24)

6 (4) 1 (2)

25 (43) 64 (45)

9 (16) 28 (20)

10 (17) 21 (15)

12 (21) 24 (17)

2 (3) 5 (4)

13 (77) 22 (42) 30 (38) 24 (47)

1 (6) 12 (23) 14 (18) 10 (20)

1 (6) 9 (17) 15 (19) 6 (12)

2 (12) 8 (15) 16 (20) 9 (18)

– 1 (2) 4 (5) 2 (4)

21 (42) 15 (42) 53 (47)

10 (20) 4 (11) 23 (20)

7 (14) 9 (25) 15 (13)

10 (20) 6 (17) 20 (18)

2 (4) 2 (6) 3 (3)

TABLE 3. Mean ± SD of perceived discrimination-devaluation scores (PDD)

Overall 醞釀期Developing period 前驅期Precursor period 早顯期Early sign period 風險期Risky period 高危期High risk period

n

Total PDD score

Devaluation score

Discrimination score

200 89 37 31 36 7

2.79 ± 0.53 2.73 ± 0.53 2.88 ± 0.52 2.87 ± 0.55 2.79 ± 0.55 2.61 ± 0.45

2.56 ± 0.64 2.50 ± 0.65 2.59 ± 0.65 2.72 ± 0.64 2.56 ± 0.63 2.40 ± 0.49

2.96 ± 0.55 2.93 ± 0.56 3.09 ± 0.51 2.97 ± 0.55 2.95 ± 0.56 2.76 ± 0.51

measured in the study. As PDD is designed for the mentally ill, it may be more appropriate to adopt a scale specific to measure general public’s perception. Third, attitudes of individuals at ultra-high risk for psychosis were not investigated which can potentially influence the choice of label. And finally, the study included Chinese sample only and generalization to other culture may not be feasible. Notwithstanding the aforementioned limitations, this study represents an initial effort to search for a potential and locally adopted label for people at risk of psychosis. This useful and culturally acceptable Chinese term ‘yun-niang-qi’ will be actively proposed for use in clinical and research settings in the local community. A proper Chinese label will not only enable effective discourse among health-care professionals and lay public regarding the condition, but its application may also help avoid the confusion from different labels used. It will be an ongoing process which requires concerted effort from health-care professionals, policy makers, media and general public to gradually equip the readiness in individuals and their family members 4

to seek help through a comprehensive and accessible early detection service. Further studies to determine the effectiveness of the labelling are required to guide further public awareness strategies for people at risk for psychosis. REFERENCES 1. Sato M. Renaming schizophrenia: a Japanese perspective. World Psychiatry 2006; 5: 53–5. 2. Lee YS, Kim JJ, Kwon JS. Renaming schizophrenia in South Korea. Lancet 2013; 382: 683–4. 3. Chiu CP, Lam MM, Chan SK et al. Naming psychosis: the Hong Kong experience. Early Interv Psychiatry 2010; 4: 270–4. 4. Chung KF, Chan JH. Can a less pejorative Chinese translation for schizophrenia reduce stigma? A study of adolescents’ attitudes toward people with schizophrenia. Psychiatry Clin Neurosci 2004; 58: 507–15. 5. Sartorius N, Chiu H, Heok KE et al. Name change for schizophrenia. Schizophr Bull 2014; 40: 255–8. 6. Tang JY, Wong GH, Hui CL et al. Early intervention for psychosis in Hong Kong–the EASY programme. Early Interv Psychiatry 2010; 4: 214–9. 7. Birchwood M, Lester H, McCarthy L et al. The UK national evaluation of the development and impact of Early Interven© 2015 Wiley Publishing Asia Pty Ltd

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among people with schizophrenia in 14 European countries: the GAMIAN-Europe study. Schizophr Res 2010; 122: 232–8. 21. Link BG, Struening EL, Neese-Todd S, Asmussen S, Phelan JC. Stigma as a barrier to recovery: the consequences of stigma for the self-esteem of people with mental illnesses. Psychiatr Serv 2001; 52: 1621–6. 22. Zane N, Yeh M. The use of culturally-based variable in assessment: studies on loss of face. In: Kurasaki KS, Okazaki S, Sue S, eds. International and cultural Psychology Series: Asian American Mental Health: Assessment Theories and Methods. New York: Kluwer Academic/Plenum, 2002; 123–40.

APPENDIX I Vignette People being at high risk for psychosis have not yet developed a full psychotic disorder but have some symptoms that might lead to a future psychotic disorder. However, only 35% of these individuals will go on to exhibit psychosis within 2.5 years of identification. Which of the following Chinese descriptions best describe this status? 有些人在精神病發前的一段時間,雖然未完全發 病,但可能會有少量病徵或會導致將來真正發病。但 是,這些人士只有百分之三十五在兩年半內會演變為 精神分裂或思覺失調。您認為以下哪一個詞語最適合 形容這種狀態呢? 1. 2. 3. 4. 5. 6.

醞釀期 前驅期 早顯期 風險期 高危期 其他:

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Chinese label for people at risk for psychosis.

With the movement of early detection and intervention for people at risk for psychosis, there is a growing need for a uniform terminology to describe ...
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