Assignment: Summary of Interviews

http://tandfonline.com/ijmh ISSN: 0963-8237 (print), 1360-0567 (electronic)

J Ment Health, 2019; 28(3): 304–311 � 2019 Informa UK Limited, trading as Taylor & Francis Group. DOI: 10.1080/09638237.2018.1487537

O R I G I N A L A R T I C L E

Secrecy versus disclosure of mental illness among adolescents: II. The perspective of relevant stakeholders

Nadine Mulfinger1, Nicolas Rüsch1, Philipp Bayha1, Sabine Müller2, Isabel Böge3, Vehbi Sakar4, and Silvia Krumm1

1Department of Psychiatry II, Ulm University and BKH Günzburg, Ulm, Germany, 2Department of Child and Adolescent Psychiatry, University

Hospital Ulm, Ulm, Germany, 3

Department of Child and Adolescent Psychiatry, Centre for Psychiatry Ravensburg Weissenau, Ravensburg, Germany, 4Department of Child and Adolescent Psychiatry, Josefinum, Augsburg, Germany

Abstract

Background: The burden of mental illness (MI) is exacerbated when adolescents with MI are confronted with stigma and social exclusion. Adolescents face the difficult decision whether or not to disclose their MI. Focus groups (FGs) were conducted with parents of adolescents with MI as well as with teachers, mental health professionals (MHPs) and adolescents without MI. Aim: To collect information from relevant stakeholders on secrecy versus disclosure of MI among adolescents. Methods: Thirteen FG sessions with 87 participants were recorded, transcribed and analyzed using qualitative content analysis to identify major themes. Results: Selective disclosure and social media as a potential way of disclosure emerged as dominant themes. Negative aspects of disclosure on social media were discussed. Stigma and labeling were seen as disadvantages of disclosure. Social support was perceived as one advantage of disclosure. Distinctive features of adolescence, such as self-discovery, appeared as specific problems. Parents, teachers, MHPs and adolescents without MI were considered important for disclosure. Participants discussed how to help adolescents with their dilemma between disclosure and secrecy. Conclusions: The findings suggest that disclosure decisions are personal and influenced by the individual’s environment. Implications for interventions that aim to support adolescents with MI in this regard are discussed.

Keywords

Mental illness, mental health condition, adolescents, stakeholders, disclosure, focus groups

History

Received 7 June 2017 Revised 22 January 2018 Accepted 16 April 2018 Published online 15 November 2018

Introduction

Youth with mental illness (MI) often anticipate or experience

stigma. As MIs are often stigmatized but concealable

conditions, adolescents with MI can decide whether or not

to disclose their MI. Although coming out can result in further

discrimination, disclosure can challenge stigma and have a

positive impact on well-being and empowerment (Corrigan

et al., 2010, 2013).

Decisions about disclosure include various considerations.

In their Disclosure Processes Model, Chaudoir & Fisher

(2010) found that disclosure affects people’s lives in two

ways: (1) people who disclose information about their MI

expose themselves to social evaluation which can result in

support or stigmatization. According to Sentenac et al.

(2012), school-aged children with chronic conditions were

subjected to higher levels of victimization in comparison with

healthy children. Here, victimization occurred more often

among children with psychiatric diagnoses than among those

with chronic physical diseases. In another study among

college students, age and familiarity with MI were found to

predict MI stigma (Feeg et al., 2014). (2) The information

disclosed can change social interactions as it influences

perceptions and behaviors in the social context.

Furthermore, the environment is affected by disclosure

decisions (DDs). Mothers of children with disruptive

behaviors reported blaming themselves for their child’s

behavior and feeling stigmatized by others (Fernández &

Arcia, 2004). Goffman (1963) referred to this phenomenon as

‘‘courtesy stigma’’. On the other hand, the environment can

influence adolescents’ decisions to disclose: Hartman et al.

(2015) showed that parenting style influenced self-conceal-

ment and alcohol use among university students. Levels of

parental authoritarianism, whether on the part of the father or

mother, were directly linked to self-concealment.

Generally, adolescence is a challenging developmental

period as the establishment of relationships with other

adolescents becomes more important and young people

begin to build new interpersonal relationships (Bukowski

et al., 1993). In addition, children and adolescents are

embedded in different social contexts such as family and

Correspondence: Nadine Mulfinger, Department of Psychiatry II, Ulm University and BKH Günzburg, Parkstrasse 11, 89073 Ulm, Germany. Tel: þ49 731 500 618 72. E-mail: [email protected]

school. Each of these can affect the impact of the child’s

illness (Matza et al., 2004).

In summary, DDs among adolescents with MI are both

influenced by and have a bearing on the immediate environ-

ment such as parents, friends, school and health care

providers. As far as we know, the only existing qualitative

research examining relevant stakeholder views on secrecy and

disclosure was conducted in the US (Buchholz et al., 2015).

Results may therefore not be applicable to other countries.

Moreover, perspectives of mental health professionals

(MHPs) have not been examined.

In order to better understand the complexity of DDs among

youth diagnosed with MI, the aim of our study was to

explore the views of different stakeholders on secrecy and

disclosure of MI among adolescents. A better understanding

of contextual factors can inform interventions to support

adolescents in their DDs.

Methods

In order to address the research question, focus groups (FGs)

were conducted because of their emphasis on dynamic group

interaction (Vaughn et al., 1996). In part I of this two-part

article, we presented results of FGs with adolescent service

users (Mulfinger et al., 2018b). In the present study, part II,

FGs with stakeholders representing important actors in the

adolescents’ social environment (parents of adolescents with

MI, teachers, MHPs and adolescents without MI) were

conducted to explore their views on secrecy versus disclosure

of adolescents’ MI. The study was approved by the ethics

committee of Ulm University.

Recruitment

Participants were recruited via self-help groups, sports clubs,

youth centers and schools between December 2014 and May

2015. Inclusion criteria were defined for adolescents without

MI (aged 13–18) and for parents of adolescents with MI

(child’s MI in adolescence). Participants aged 18 years or

older provided written informed consent, while participants

under the age of 18 needed the written consent of their

guardian in addition to their own. Adolescent participants

received a gift voucher; adult participants were compensated

with cash for their effort.

Procedure

Based on the literature, a semi-structured interview guideline,

similar to the interview guideline for adolescents with MI,

was developed (Table 1). Each group consisted of 2–8

participants and lasted 30–110 minutes. FGs took place in

schools, at the Departments of Child and Adolescent

Psychiatry, in the facilities of Ulm University and in the

facilities of self-help groups. The language used was German.

All interviews were conducted by a moderator (NM) and a co-

moderator (PB).

Analysis

All discussions were recorded and transcribed verbatim

(Dresing et al., 2015). Qualitative content analysis

(Kuckartz & McWhertor, 2014) was used to identify and

code major themes with both deductive and inductive

approaches. The qualitative analysis software package

MAXQDA (Kuckartz & McWhertor, 2014) was used for

qualitative data analysis. This software enables both an

inductive and a deductive text coding. The first interview of

each stakeholder group was simultaneously coded by two

researchers (PB and NM), the remaining interviews were

coded by one researcher and subsequently cross-checked by

the second researcher. The further analysis procedure was the

same as in part I (Mulfinger et al., 2018b). For a detailed

description of the analysis procedure, see Figure 1. Results

were periodically discussed in qualitative research workshops

and with other team members. In case no consensus could be

reached, a third and senior researcher (SK or NR) was

consulted. The first author translated the quotations into

English; these were reviewed by the research team and a

bilingual translator.

Results

A total of 87 participants were recruited for 13 FGs composed

of 24 adolescents without MI (three FG; aged 14–17), 26

teachers (four FG; aged 29–65), 22 MHPs (three FG; aged

25–56) and 15 parents (three FG; aged 44–74). The charac-

teristics of all participants are shown in Table 2.

The following three main categories were generated based

on the research questions and subcategories emerged from the

transcripts: (1) uncertainties and problems in dealing with MI;

Table 1. Focus group interview guideline.

1. Common perceptions of adolescents with MI among the public: ‘‘What do other people think about adolescents with mental illness in your opinion?’’

2. Communication about MI ‘‘With whom do adolescents talk about their mental illness in your opinion?’’

3. Advantages and disadvantages of disclosure ‘‘Do you think adolescents should talk openly about their mental illness or should rather keep it secret?’’

4. Consequences of being labeled ‘mentally ill’ by others ‘‘What does it mean to an adolescent, in your opinion, when the environment knows about his or her mental illness?’’

5. Consequences of self-labeling as ‘mentally ill’ ‘‘What do you think: How does it feel for adolescents to identify themselves as persons with mental illness?’’

6. Coping of adolescents with stigma and discrimination ‘‘How should adolescents deal with stigmatization or discrimination because of their mental illness in your opinion?’’

7. Recommendations to support adolescents in their disclosure decisions ‘‘What could be helpful for adolescents in their decision whether or not to disclose their mental illness?’’

DOI: 10.1080/09638237.2018.1487537 Secrecy versus disclosure of mental illness II 305

(2) perspectives on disclosure versus secrecy; (3) recommen-

dations for decision making (Table 3).

Uncertainties and problems in dealing with MI

Insecurity in contact with adolescents with MI

At the level of everyday experiences, teachers reported being

insecure when dealing with students’ MIs.

I recognize when someone sits apathetically in the

classroom and does nothing and keeps silent [. . .].

I recognize when someone has an emotional outburst and

cries and sobs [. . .]. But I don’t feel competent to say that they [students with MI] are mentally ill. (Teachers # 1; <)

Adolescence was seen as an ambiguous and vulnerable

period, when adolescents are in a phase of self-discovery

and ‘normal’ problems, not necessarily related to MI, are

frequent.

They [adolescents] are in a phase of self-discovery. And

they often feel weak, which also affects their personality.

Figure 1. Development of main and subcategories.

Table 2. Participants’ characteristics.

Teachers MHP Parents Adolescents without MI Participants 26 22 15 24

Age (years) 46.3 (12.0) 40.4 (8.7) 55.5 (8.7) 15.9 (1) M (SD) Sex (female), N (%) 16 (61.5) 15 (68.2) 13 (86.7) 15 (62.5) Married N (%) 17 (65.4) 12 (54.5) 9 (60) – Educational degree (adolescents: in school

leading to this degree), N (%) 12th/13th grade higher education entrance qualification 26 (100) 18 (81.8) 2 (13.3) 14 (58.4) 9th/10th grade secondary school graduation – 4 (18.2) 13 (86.7) 10 (41.6) Work experience (years), M (SD) 17.1 (11.5) 11.6 (10) – – Job title (%) Psychologist¼32

Educator¼23 Child and adolescent psychiatrist¼27 Social worker¼9 Music therapist¼9

306 N. Mulfinger et al. J Ment Health, 2019; 28(3): 304–311

And when this personality is also a mental burden. . .. (Teachers # 2; <)

A teacher described her insecurity arising from the

dilemma of perceiving a student’s need for help and sensing

her own profound lack of knowledge:

We observe things that we can’t classify. On the one hand

we think we should do something, but then we don’t

actually say anything because we are insecure [about MI].

(Teachers # 2; ,)

Parents and MHPs largely echoed teachers’ comments.

Many of them stressed that the environment felt helpless and

overburdened with the MI of adolescents, resulting in an

inability to act. Adolescents without MI emphasized they

could not cope with the MI of their friends and did not know

how to respond.

You notice when your friend has a problem. But to put up

with it and to support the friend when she is feeling

down. . . this becomes a burden for yourself. (Adolescents # 1; ,)

Some adolescents without MI mentioned they often faced

the fact that parents had the last word regarding help-seeking

and forms of treatment.

Friends feel overwhelmed by it [a friend’s MI]. They can’t

help by taking [the adolescent with MI] to the doctor, that’s

what parents mostly do. (Adolescents # 1; ,)

In one FG of adolescents without MI, participants equated

MIs with intellectual disabilities; one young man referred to

his experiences with choir members of a social institution who

‘‘sing much more passionately than normal people’’

(Adolescents # 3; <).

Stigmatization

Stigmatization emerged as an important topic across all FGs.

Both parents and MHPs described that MIs among adoles-

cents were more stigmatized than other conditions. Parents,

MHPs and teachers mentioned that parents were often blamed

for the MI of their child.

People say my son has just become like this because his

father died so early and I can’t get my act together. There is

enormous prejudice in society [. . .]. (Parents # 1; ,)

Participants across all FGs reported discrimination against

adolescents with MI, especially in school and from adoles-

cents without MI. Teachers referred to colleagues who were

ignorant or unaware of MI among students.

There are also teachers who just make rash judgments

about the behavior of students [with MI] – that they’re just

out of place for example. Or that they just do nothing at all.

(Teachers # 3, <)

MHPs reported that teachers accused adolescents of using

their MI as an excuse to avoid doing things such as

homework. Some MHPs described a general lack of aware-

ness of MI:

I remember when I was a teacher, I was shocked by how

many teachers simply neglected it [MI], [. . .]. Really obvious mental health problems simply weren’t taken into

consideration. Generally they either just observed [it] or

looked the other way. (MHPs # 2; ,)

Table 3. Main categories and subcategories with number of quotes (n).

Main category Selected subcategory Major themes

Uncertainties and problems in dealing with MI (n¼480)

Insecurity in contact with adolescents with MI (n¼75)

Helplessness of environment in dealing with adolescents, special features of adolescence: higher incidence of problems not necessarily connected to MI, limited sources of help as parents decide for children regarding help-seeking, lack of knowledge: MI were equated with intellectual disabilities

Stigmatization (n¼122) Negative attitudes towards adolescents with MI in the public; immediate environment also affected

School setting Teachers: unawareness of MI, students use MI as excuse; but also positive discrimination

Adolescents without MI Indifference towards adolescents with MI Working environment Poor chances to get a job, impairment of professional development Family Family members cannot accept MI

Perspectives on disclosure versus secrecy (n¼1249)

Benefits of disclosure (n¼93) Understanding, environment knows how to react, simplifies respectful inter- action, relief

Risks of disclosure (n¼107) Risk of stigmatization, social exclusion in different contexts, label can stick, consequences for environment (burden), disclosure decisions not always controllable by affected adolescents, deterioration of symptoms possible

Risks of secrecy (n¼37) Burden, social withdrawal, environment cannot react adequately Benefits of secrecy (n¼8) Avoidance of stigmatization, normal treatment Internal and external criteria for

disclosure (n¼117) Internal: Self-confidence, courage; external: trust and discretion

Ways to disclose (n¼140) ‘Testing out’ disclosure in a small group of people, selective disclosure preferred, social media as chance and risk

Recommendations for decision making (n¼83)

Communication (n¼52) Communication with reliable people or people with lived experiences of MI; moderated group discussions, talking about consequences of disclosure, testing out disclosure

DOI: 10.1080/09638237.2018.1487537 Secrecy versus disclosure of mental illness II 307

Parents felt hurt because they did not receive any reaction

to or comments on their child’s MI. Some parents mentioned

the difficulties of professional development for adolescents

with MI.

They are isolated in our society. [. . .] Try to apply for a job and say that you are mentally ill. Just forget it. It is almost

a death sentence in society. (Parents # 3; ,)

Contrary to the perception of adolescents without MI,

parents felt most adolescents without MI did not care about

other adolescents’ MI problems and excluded them from

friendship groups. The same applied to relatives: ‘‘[. . .] [My] brother still treats our son disparagingly because he thinks

it’s his own fault. As though if he had stopped smoking or if he

had taken his medicine, everything would be fine’’ (Parents #

3; ,). While many adolescents were unable to report concrete

examples of unfair treatment of adolescents with MI, they

discussed social exclusion and prejudice as general represen-

tations within society.

[. . .] People are quick to judge others [. . .], sometimes it’s just a comment that isn’t meant to be harmful, but at that

moment they can hurt people deeply. (Adolescents # 1; ,)

Perspectives on disclosure versus secrecy

Risks and benefits of disclosure

Across all FGs, risks of disclosure were discussed by

participants slightly more than benefits. Understanding was

described as one of the most important benefits of disclosure.

I think it’s important that people around you know about it

[MI]. Because then they can be much more considerate.

Like when someone is ill and struggles to do as much as he

usually can. Then it is good when people around simply

know [about the MI] and can accept it. (Parents # 3; ,)

Adolescents without MI referred to relief as another

benefit of disclosure, ‘‘a sorrow shared is a sorrow halved’’

(Adolescents # 1; <). Parents and MHPs agreed that after disclosure, frequent questions about MI could be avoided.

I think if it is clearly phrased, it will simply evaporate. All

the questions. People will still ask questions, but only once,

they won’t bother you further. (MHPs # 2, ,)

One MHP stated that disclosure also promoted personal

growth: ‘‘The adolescents, who have done this [disclosure],

they’ve cleared a major hurdle, because [. . .] [they have] demonstrated the courage to live. [They are] true to themselves

and once they manage that, it doesn’t matter that much what

particular situations might follow [. . .]’’ (MHPs # 3; ,). However, it was also stressed that the label ‘mentally ill’

might endure even after recovery.

He will have that label forever [. . .]. Even if he recovers and feels better, he is always the person who used to be

crazy. (Teachers # 1; <)

In contrast to claims that disclosure might prevent

intrusive questions from others, some parents mentioned

that disclosure could lead to even more attention from

others. A mother reported that her son avoided social events

because of his fear of ‘‘someone broach[ing] the topic [MI]

with him, or [of it coming] up at dinner or a birthday

party’’ (Parents # 1, ,). Teachers, MHPs and adolescents without MI perceived

parents as a barrier to disclosure. Major discrepancies

regarding disclosure between parents and their children with

MI were observed in all FGs. Participants thought parents

wanted to keep their children’s MI a secret – sometimes

even against their children’s will. The reverse was also

observed: Some parents were willing to disclose their

children’s MI even if their children did not want to reveal

it: ‘‘Disclosure was initiated from the family, but I also

know that the daughter suffered because of it’’ (Teachers #

1; ,). School appeared as the most significant setting where

adolescents were pushed to decide whether or not to disclose

their MI to justify reasonable accommodations:

There are cases where the student wants to keep it

absolutely private [. . .]. As teachers we are then obliged to tell our close colleagues about it [MI]. They have to

know why some students are absent a lot [. . .]. (Teachers # 4; <)

In the therapeutic setting, interaction and open communi-

cation about MI between fellow patients might result in a

deterioration of their condition:

It is also possible that together they make it [MI] worse,

especially in the case of eating disorders. This ‘we are the

club of ascetics’ sort of thing. It’s especially the case for

girls. (MHPs # 2; ,)

Risks and benefits of secrecy

Most participants agreed that secrecy had more disadvantages

than benefits. In their view, keeping MI secret was a barrier to

authentic behavior and placed an additional burden on them.

I think when you always [. . .] try to be ‘normal’, and you always try to be like others, I think that can cause damage

in the long run. (Adolescents # 1; ,)

Another consequence of secrecy was social withdrawal to

avoid stigmatization. Again, it was stressed that negative

consequences of secrecy did not only affect adolescents

themselves but their social environment, too. Compared to the

risks, benefits of secrecy were only marginally addressed:

Secrecy was assessed as a means to avoid stigmatization and

being treated like ‘‘a toddler’’ (Adolescents # 2; ,). Besides shame, a desire for normalization was reported as a reason for

secrecy:

[. . .] I wouldn’t like it if my schoolmates knew about it [MI], especially if I am able to behave rather normally and

if I don’t stand out much. (Adolescents # 3; <)

308 N. Mulfinger et al. J Ment Health, 2019; 28(3): 304–311

Self-confidence, trust and discretion

Participants across all FGs addressed criteria for disclosure

that must be met by adolescents with MI (internal criteria)

and by people to whom adolescents could entrust their MI

(external criteria). Self-confidence and courage, as well as

trust and discretion, were reported to be of exceptional

importance. While adolescents without MI generally sup-

ported the idea of disclosing MI and provided good reasons

for doing so, it was acknowledged that disclosure takes a lot of

courage:‘‘[. . .] I’m not sure if I would have the courage [to talk about my MI]’’ (Adolescents # 3; <).

Additionally, the fact that the decision between disclosure

and secrecy was a very individual one was emphasized.

I think they [adolescents with MI] should decide for

themselves, whom and how much they want to tell.

(Adolescents # 1; ,)

Ways of disclosing

All participants emphasized that adolescents need a close

person familiar with MI. Especially in school, MHPs and

teachers stressed that it would be helpful if a few teachers

were knowledgeable about MI.

I think it’s helpful to have a minimum of insiders, so that

the family knows and that someone at school [. . .] knows about it. (MHPs # 1; <)

Parents and MHPs recommended describing MI rather

than using the explicit label when talking to others. Selective

disclosure was often advised: ‘‘disclosure, but not in a public

way’’ (Teachers # 3; <). All respondents recommended testing the consequences of disclosure in a small group before

revealing a MI to a larger group. Different levels of secrecy

were mentioned, e.g. giving true but incomplete information

in contrast to telling lies. Social media played an important

role.

One positive example is that a student, a patient in the

children’s ward, before his [inpatient] stay he wrote a

WhatsApp message to his classmates: ‘I am going to be

away for a while. I am in hospital.’ He used it as an

information platform which was probably easier for him

than to tell them directly. (MHPs 2; <)

Teachers and MHPs in particular referred to the risk of

losing control on social media. Social contacts became

increasingly superficial and developing trust was more

challenging. Furthermore, social media could encourage

indiscriminate disclosure: ‘‘[. . .] there are also people who put it [MI] on stage. I’ve seen many pictures of self-injury on

Instagram and stuff like that’’ (MHPs # 1; ,).

Recommendations for decision making

The most frequent advice for youth with MI regarding their

DDs was to communicate with reliable people or people with

lived experience of MI. Consequences of disclosure and

secrecy should be considered together and moderated group

discussions were recommended in this context. MHPs and

parents emphasized that youth should be aware of their

strengths and resources and not only concentrate on problem-

related issues. In particular, self-confidence was seen as a

valuable resource for facilitating disclosure.

They not only have a diagnosis, but also their strengths

[. . .]. Still. We also need to take a look at these things with them together. They also have to be aware of that

[resources]. (Parents # 1; ,)

MHPs thought they could support adolescents with MI,

e.g. preparing them for disclosure. MHPs could also mediate

between adolescents with MI and others.

Discussion

This study examined a wide range of stakeholder perspectives,

to the best of our knowledge for the first time in Europe and

unlike a previous US study including MHPs (Buchholz et al.,

2015). Across all FGs, special problems in recognizing MIs

and insufficient knowledge about MIs among adolescents

were reported. This led to deep insecurity when dealing with

adolescents with MI. This result is in line with previous work.

Austin et al. (2002) found that young people believed epilepsy

to be a form of MI. Heary et al. (2014) reported that younger

children showed limited awareness of unfamiliar conditions

such as MIs. Uncertainty and lack of knowledge made it more

difficult for friends without MI and teachers to respond

appropriately to the adolescents’ MI. DDs are embedded in

different social and employment contexts, as Brohan and her

colleagues (2014) demonstrated regarding employment.

Across all FGs, it was emphasized that MIs among

adolescents were perceived as stigmatized, hampering pro-

fessional development and causing discrimination especially

in school. This finding is supported by Walker et al. (2008)

who described how adolescents without MI endorsed more

negative attitudes towards adolescents with ADHD and

depression than towards adolescents with asthma. In their

study of college students, Feeg and colleagues (2014) found

younger age and less familiarity with MI to be predictors of

MI stigma.

Unlike a previous qualitative study of stakeholder views on

disclosure of MI among adolescents in the US (Buchholz

et al., 2015), participants across all FGs saw more risks than

benefits of disclosure. The main risk was that the label

‘mentally ill’ might stick after recovery. The main advantage

of disclosure for young people with MI was being understood

and finding relief. Secrecy was considered risky because it

might constitute an additional burden. Again, negative

consequences of secrecy equally applied to the adolescents’

environment.

Trust, discretion and self-confidence were addressed as

critical conditions for disclosure. This is in line with Brohan

et al. (2014) who found trust as a factor for disclosure in the

employment context. The meaning of establishing trust prior

to disclosure was highlighted in this context. In a qualitative

study, Kaushansky et al. (2017) found that adolescents and

young adults with chronic illnesses tended to disclose

their condition to trustworthy people or to those they felt

comfortable with.

DOI: 10.1080/09638237.2018.1487537 Secrecy versus disclosure of mental illness II 309

FG participants recommended selective disclosure. These

findings are consistent with disclosure patterns among adults.

Participants in a Dutch study were open with their partner and

close family members, but less so with colleagues (Bos et al.,

2009). Reavley et al. (2018) found a similar pattern in

Australia: Adults of different ages were more likely to disclose

MIs to intimate partners, some friends and some family

members rather than telling everyone or no one. Soldiers with

MI and their professional environment also recommended

selective disclosure, although opening up to partners and

families was seen as more difficult (Rüsch et al., 2017).

Most participants agreed that communication with people

with lived experience of MI was helpful, and participants

recommended moderated group discussions. These findings

are consistent with a study on disclosure among adolescents

with chronic physical illnesses (Kaushansky et al., 2017)

where patients reported that talking with a peer about their

condition led to increased feelings of acceptance and

understanding.

Limitations need to be considered. We cannot rule out the

possibility that participants with better knowledge of mental

health or more sympathy for adolescents with MI attended our

FGs and that participants may therefore not be representative

of the stakeholder groups. Furthermore, participants’ com-

pensation might also affect the willingness to attend the FGs.

Despite these limitations, our findings have implications for

future research. It became clear that especially teachers felt

insecure how to deal with students’ MI. This might be due to a

lack of knowledge regarding MIs. In this regard, the imple-

mentation of educative approaches aimed at increasing

knowledge about MIs seems appropriate in school settings.

Furthermore, it turned out that teachers hoped to receive

support when dealing with students with MI. The implemen-

tation of school-based health centers (SBHCs) could ensure

better access to mental health care for children and adolescents

(Bains & Diallo, 2016) and could also serve to support

teachers and other professionals. Therapists also played an

important role with respect to DDs. They could prepare

adolescents for a possible disclosure in different contexts.

Finally, our findings helped to better understand the context of

DDs that might inform future interventions. Since communi-

cation and peer support appeared as dominant topics regarding

DDs, adapted group programs facilitated by young people with

lived experience of MI (such as ‘Honest, Open, Proud’/HOP;

Corrigan et al., 2015; Mulfinger et al., 2018a; Rüsch et al.,

2014) can support adolescents in their DDs. Based on the

present findings, the existing HOP adolescent version,

developed by Sue McKenzie, Suzette Urbashich, WISE

Wisconsin (https://wisewisconsin.org/) and Patrick W.

Corrigan in the US, was translated and adapted for the

German context. Results of a pilot randomized controlled trial

among adolescents with MI showed that HOP significantly

reduced stigma stress, self-stigma and increased quality of life

and had positive effects on a variety of other stigma- and

health-related outcomes (Mulfinger et al., 2018a).

Conclusions

Disclosure decisions are individual, complex and influenced

by the environment of the individual. Due to high levels of

uncertainty in dealing with adolescents’ MI, initiatives to

increase knowledge and understanding and to reduce public

stigma are needed. This could be achieved through educa-

tional work in schools, when teachers and other professionals

improve their understanding of MI and learn how to respond

appropriately to students with MI. Contact between adoles-

cents with MI and those without is likely to improve attitudes

towards people with MI (Thornicroft et al., 2016). Thus,

schools can invite adolescents or adults with lived experience

to talk about challenges of MI and about recovery to achieve

mutual understanding among adolescents with MI, teachers

and classmates. Furthermore, peer-led group programs such

as ‘Honest, Open, Proud’ can support adolescents with their

decision whether to disclose their MI and to increase their

empowerment (Corrigan et al., 2015; Mulfinger et al., 2018a;

Rüsch et al., 2014). In the long term, the implementation of

SBHCs could contribute to a supportive surrounding at

school.

Declaration of interest

No potential conflict of interest was reported by the authors.

References

Austin JK, Shafer PO, Deering JB. (2002). Epilepsy familiarity, knowledge, and perceptions of stigma: Report from a survey of adolescents in the general population. Epilepsy Behav, 3, 368–75.

Bains RM, Diallo AF. (2016). Mental health services in school-based health centers: Systematic review. J School Nurs, 32, 8–19.

Bos A, Kanner D, Muris P, et al. (2009). Mental illness stigma and disclosure: Consequences of coming out of the closet. Issues Ment Health Nurs, 30, 509–13.

Brohan E, Evans-Lacko S, Henderson C, et al. (2014). Disclosure of a mental health problem in the employment context: Qualitative study of beliefs and experiences. Epidemiol Psychiatr Sci, 23, 289–300.

Buchholz B, Aylward S, McKenzie S, Corrigan PW. (2015). Should youth disclose their mental health challenges? Perspectives from students, parents, and school professionals. J Public Ment Health, 14, 159–68.

Bukowski WM, Hoza B, Boivin M. (1993). Popularity, friendship, and emotional adjustment during early adolescence. New Direct Child Adolesc Dev, 23–37.

Chaudoir SR, Fisher JD. (2010). The disclosure processes model: Understanding disclosure decision making and postdisclosure out- comes among people living with a concealable stigmatized identity. Psychol Bull, 136, 236–56.

Corrigan PW, Kosyluk KA, Rüsch N. (2013). Reducing self-stigma by coming out proud. Am J Public Health, 103, 794–800.

Corrigan PW, Larson JE, Michaels PJ, et al. (2015). Diminishing the self-stigma of mental illness by coming out proud. Psychiatry Res, 229, 148–54.

Corrigan PW, Morris S, Larson JE, et al. (2010). Self-stigma and coming out about one’s mental Illness. J Community Psychol, 38, 259–75.

Dresing T, Pehl T, Schmieder C. (2015). Manual (on) transcription. Transcription conventions, software guides and practical hints for qualitative researchers, 3rd English ed. Available from: http:// www.audiotranskription.de/english/manual-on-transcription.htm.

Feeg VD, Prager LS, Moylan LB, et al. (2014). Predictors of mental illness stigma and attitudes among college students: Using vignettes from a campus common reading program. Issues Ment Health Nurs, 35, 694–703.

Fernández MC, Arcia E. (2004). Disruptive behaviors and maternal responsibility: A complex portrait of stigma, self-blame, and other reactions. Hisp J Behav Sci, 26, 356–72.

Goffman E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster.

Hartman JD, Patock-Peckham JA, Corbin WR, et al. (2015). Direct and indirect links between parenting styles, self-concealment (secrets),

310 N. Mulfinger et al. J Ment Health, 2019; 28(3): 304–311

impaired control over drinking and alcohol-related outcomes. Addict Behav, 40, 102–8.

Heary C, Hennessy E, Swords L. (2014). Stigma associated with disease and disability during childhood and adolescence: A developmental approach. In: Corrigan PW, ed. The stigma of disease and disability: Understanding causes and overcoming injustices. Washington: American Psychological Association, 205–22.

Kaushansky D, Cox J, Dodson C, et al. (2017). Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illness, 13, 49–61.

Kuckartz U, McWhertor A. (2014). Qualitative text analysis: A guide to methods, practice & using software. London: Sage Publications.

Matza LS, Swensen AR, Flood EM, et al. (2004). Assessment of health- related quality of life in children: A review of conceptual, methodo- logical, and regulatory issues. Value Health, 7, 79–92.

Mulfinger N, Müller S, Böge I, et al. (2018a). Honest, Open, Proud for adolescents with mental illness: Pilot randomized controlled trial. J Child Psychol Psychiatry, 59, 684–91.

Mulfinger N, Rüsch N, Bayha P, et al. (2018b). Secrecy versus disclosure of mental illness among adolescents: I. The perspective of adolescents with mental illness. J Ment Health. doi:10.1080/09638237.2018. 1487535.

Reavley NJ, Morgan AJ, Jorm AF. (2018). Disclosure of mental health problems: Findings from an Australian national survey. Epidemiol Psychiatr Sci, 27, 346–56.

Rüsch N, Abbruzzese E, Hagedorn E, et al. (2014). Efficacy of Coming Out Proud to reduce stigma’s impact among people with mental illness: Pilot randomised controlled trial. Br J Psychiatry, 204, 391–7.

Rüsch N, Rose C, Holzhausen F, et al. (2017). Attitudes towards disclosing a mental illness among German soldiers and their comrades. Psychiatry Res, 258, 200–6.

Sentenac M, Arnaud C, Gavin A, et al. (2012). Peer victimization among school-aged children with chronic conditions. Epidemiol Rev, 34, 120–8.

Thornicroft G, Mehta N, Clement S, et al. (2016). Evidence for effective interventions to reduce mental-health-related stigma and discrimin- ation. Lancet, 387, 1123–32.

Vaughn S, Schumm JS, Sinagub JM. (1996). Focus group interviews in education and psychology. Thousand Oaks: Sage Publ.

Walker JS, Coleman D, Lee J, et al. (2008). Children’s stigmatization of childhood depression and ADHD: Magnitude and demographic variation in a national sample. J Am Acad Child Adolesc Psychiatry, 47, 912–20.

DOI: 10.1080/09638237.2018.1487537 Secrecy versus disclosure of mental illness II 311

Copyright of Journal of Mental Health is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.