Mental Health Stigma: An Exploration of certain Irish Service Users’ Experiences and Coping Processes

Lucy Smith, Eric Byrnes and Rachel Glennon.

MH Stigma

Abstract

Background: Previous research indicates that those with mental health difficulties can experience stigma as a result of their diagnosis. The extent to which this affects the individual may depend partly on their coping processes. The current study aimed to contribute to the limited existing research within Ireland by exploring stigma experiences and coping processes among mental health service users.

Method: Participants were selected from a cohort of service users attending a secondary mental health care service. Two focus groups were conducted (N= 10), exploring mental health stigma and coping processes. The data were transcribed and subjected to thematic analysis.1

Results: Three core themes were identified. These included: stigma experiences; negative implications of experiences; and coping. Subthemes included: externalised stigma; institutional stigma; internalised stigma; loss; safety behaviours; wellness and recovery; and the need for mental health education.

Conclusion: Participants reported experiencing stigma at an interpersonal, community, and institutional level which contributed to internalised stigma and a sense of loss. Participants developed safety behaviours as a means of coping. They highlighted self-acceptance as an important coping factor. They also suggested the need for more comprehensive mental health education in Ireland.

 

Introduction

 

Stigma is a complex phenomenon, fuelled by negative attributions about some perceived potential threat of another person/group, due to a ‘social identity that disqualifies them from full social acceptance’.2,3 Research has consistently found that people with mental health difficulties are regularly the subject of stigma, i.e., being treated and thought of less favourably because of their difficulties, be that in the workplace, in healthcare settings, or in the community more broadly.4,5

Corrigan and Watson postulate a twofold model on the impact of mental health stigma: public stigma and self-stigma.6 Public stigma refers to a generally biased attitude or response toward those with mental health difficulties within a community/population. This can lead to people with mental health concerns being stereotyped, discriminated and prejudiced against.6,7 The experience of being stigmatised in this way has the potential to compound mental illness and reduce the likelihood of recovery.8,9,10

Meanwhile, self-stigma occurs when individuals internalise the perception of public stigma.6,11 People often respond to this with diminished self-esteem, anger, or indifference.6 It also has the potential to be damaging as it is associated with less positive attitudes towards treatment.12,13 Although self-stigma is commonly cited as a barrier for intentions to seek treatment, there is little published exploration into how mental health stigma occurs (if at all) once the person is receiving professional support.

Some individuals do not internalise public stigma into self-stigma due to their process of coping, i.e., the conscious and/or unconscious strategies employed to protect themselves against potentially negative outcomes.14,15,16,17 For example, Heath and colleagues found that self-compassion may be a protective factor against the internalisation of stigma for those with psychological dificulties.18 This suggests that personal coping processes may determine the impact of mental health stigma on an individual.

Research suggests that ‘identity’, the construction of a positive, authentic sense of self, is a particularly important concept for coping with stigma. This necessitates a rejection of public and/or self- stigmatising beliefs.19 This might explain why efforts to cope via identity concealment efforts, through secrecy about psychological difficulties, are typically ineffective.20,21,22 Research exploring the way in which Irish people cope with mental health stigma remains limited.

A number of recent reports have identified the ongoing prevalence of mental health stigma in Ireland.23,24,25 In the 2016 Listening Meetings, Irish service users name this stigma as a significant problem in Ireland, causing difficulty in employment and accessing services.25 Similarly, the 2018 Attitudes to Mental Health Survey found significant levels of stigmatising attitudes among the 500 Irish respondents. For example, 61% felt that mental health difficulties would be viewed as a sign of failure in Ireland.26

The current study explores Irish mental health care services users’ experiences of stigma (i.e., how participants experience mental health stigmatisation) and their coping processes (i.e., what approaches participants use to buffer against the negative implications of stigma). The current study also explores whether the use of mental health supports contributes to the experience of stigma in any way. The aims of this is to contribute to the limited literature on mental health stigma in Ireland and to provide an insight into what mental health services users are doing in their lived experience to cope.

 

Methods

Participants

Participants were service users at an Adult Mental Health Service (AMH) in Limerick, Ireland. The study explored the experience of stigma across diagnostic categories and as such all service users were invited to take part. However, those experiencing florid psychosis or mania were excluded. Ten participants took part, of which six were male and four were female. Two participants were between the ages of 18-30, four were between the ages of 31-43, and four between the ages of 44-56. Five participants were diagnosed with mood disorders, one with an anxiety disorder, one with obsessive compulsion disorder (OCD), and two with schizophrenia.

Procedure

The study protocol was approved by the local Health Service Executive ethics committee. 30 service users responded to an advertisement placed in the waiting room of the service. Two were screened out; one because of florid psychosis and one because of mania.

The remainder were contacted via telephone by the researchers. 15 people continued to express willingness to attend. Given that the room being employed for the focus group accommodated no more than 12 people, it was decided that the 15 people would be split into two groups.

Each potential participant was sent a letter confirming the date of their focus group. Four people attended the first focus group and six attended the second focus group. Each focus group lasted approximately two hours.

The same two researchers, a Clinical Psychologist and an Assistant Psychologist, facilitated both groups. Guided by the research questions which were drawn from both the findings and the gaps in the literature, a semi-structured interview schedule was developed. This comprised of the following questions:

  • “What does stigma mean to this group?”
  • “What is the impact of these experiences?”
  • “What is the impact of stigma within the community?”
  • “What is your experience of support services?”
  • “What has helped you deal with these experiences?”

 

Participants’ data was anonymised following transcription to protect their confidentiality. Each participant was assigned a letter in order to identify their individual comments.

Analysis

Data from the focus groups were audio recorded, transcribed, and subjected to thematic analysis. Thematic analysis is a method for analysing qualitative data by reporting characteristic themes across the data.1 This results in a rich, yet accessible, account of the data to capture groups of insights among participants.29 A realist method was used, i.e., each  participant’s experience was interpreted as a unidirectional relationship between language and meaning. The thematic analysis was carried out in sequential stages.30

Once familiarity with the data was established, the researchers manually developed a coding framework based on the interview data. From this, a bottom-up approach was used to generate themes. This inductive approach allowed themes to be constructed directly from the interview data (as opposed to theoretically driven), whilst simultaneously constraining the researchers’ epistemological perspectives. This coding was then cross-validated for consistency as emerging themes were reviewed against the interview transcripts. This was carried out until no new themes were discovered, suggesting saturation had been achieved. Thematic tables were created, listing participants’ insights and linking them to the identified themes.

Three other researchers, independent of the study, cross-validated the data. They were provided with the thematic tables and asked to agree/disagree with the presence of the themes.  Agreement between raters was 95%, exceeding the required level (>85%) to accept the reliability of the theme .31

 

Results

Three major themes were identified: stigma experiences (subtheme: public, institutional); negative implications (subtheme: self-stigma, loss); and coping (subtheme: safety behaviours, coping processes, the need for mental health education). Each subtheme is reported in turn.

 

Stigma Experiences: Public Stigma

Public stigma was a collective experience across this cohort, even within close relationships. Participants described feeling blamed for their conditions.

My depression one time was described to me one time by the person who was meant to be closest to me as, ‘you and your selfish depression’. (M)

Others felt they had been implicitly and/or explicitly encouraged not to speak about their difficulties. This perpetuated the idea for participants that mental health difficulties were something to be ashamed of and thus, should be hidden.

Then there was, I was told (by mother) not to tell members of the family and that kind of (mental health) stuff, don’t let anybody know because, it’ll bring shame to the family. (Y)

Experiences of stigma was also reported in direct interactions within the community as perceived prejudice from others.

I’ve OCD, so if somebody notices my odd behaviour they maybe start laughing at me and you know people can pick up on it. (B)

Participants also perceived stigma in less direct ways within the community. The following quote, part read from a leaflet about a local mental health community initiative, was considered to promote a sense of ’otherness’ about people with mental health problems.

“Raising awareness in the different services available…in relation to mental health”… This all sounds fairly positive…it says “on the day, music will be played as well as”….and this is the beauty of it… “normal activities in the milk market, including cooking of food, market stalls”. So the inference of this is…. we are all mental but we are going to have normal activities as well….(M)

 

Stigma Experiences: Institutional Stigma

Participants reported perceived stigma from within services when seeking mental health care. General practitioners (GPs) were seen as the gatekeepers to mental health services, but participants reported experiences of stigma in these consultations.

I’m bi-polar…I said it to the doctor …. And he leaned across the table and shook my hand and told me how sorry he was… And I went to myself, oh my god, it’s like what you’d say to somebody who is actually terminally ill. (C)

Participants revealed their perception that society views mental health treatment less seriously than treatment of physical health. They outlined their view that this can lead to mental health resource shortages.

I think if it was actually as acceptable as it is in the wider community, there wouldn’t be a huge waiting list here (at the AMH service), or there wouldn’t be a bed shortage everywhere, there would be equal treatment for mental health as physical health. (C)

Participants also reported stigma at an organisational level. Some felt encouraged to omit their difficulties to ensure fair treatment

If I was applying for a job in the morning… there is no way I would mention any mental health….(B)

Some felt prejudiced against when they were open about their mental health. One participant reported that the latter occurred in the justice system.

But the solicitor I had at the time said “my client is suffering greatly from not seeing his daughter… and is suffering from depression at the moment”…. The judge said, the words were … “I suppose you have hit the bottle too”. (M)

Upon being refused disability payments, one participant felt this was because mental health wasn’t seen as a legitimate reason to make an application.

When you can get a letter from a doctor…. that’s not good enough. They don’t accept it, you’re a fraud, you’re a fake, you’re a liar. And you are put through the ringer. I have to sit with a civil servant and bare my soul to make my case. (M)

This was validated by one participant who actually worked in one of these organisations.

The first thing the other workers say is…“ for god’s sake…another depressed person, wouldn’t they get up and get on with it”. (N)

 

Negative Implications: Self-Stigma

There was a strong sense of shame and self-blame amongst participants. Participants described the internalisation of others’ attitudes towards them.

You would take it all on board (and think) that it is my fault, that you’d start blaming yourself, therefore then I’m ashamed of this (M)

As a result of this self-blame, stigma experiences could be viewed as confirmatory evidence that the participants themselves were at fault for their difficulties.

I am ashamed of my illness, I’m ashamed. It’s more than that, I’m ashamed of myself and for some reason I blame myself for my illness, and so when stuff like that (stigma) happens, it feeds those voices that I already have in my head. (Y)

 

Negative Implications: Loss

Two significant areas of loss were identified by the participants as a result of mental health stigma. The first was loss of professional potential, the second was loss of relationships.

My job coach says whatever you do don’t tell about your (mental) illness, any employers kind of don’t want to know like…(E)

And that’s what I think for me, relationships won’t work…There’s always been a negative connotation associated with my depression. (J)

Participants also reported a perceived negative impact on their human rights as a result of stigma. Again, this was noted in the justice system.

(The solicitor)… said to me, “everything that you are telling me is indicative of sexual harassment…but… if we take the legal action here, the first thing they will do is bring up your history of mental illness. They will bring this up, the guy will just get a slap on the wrist, and you will lose your job and on top of that, you probably won’t ever get a job again”. (V)

There was also a perceived loss of control around personal identity due to mental health diagnosis. Participants reported feeling powerless to re-claim this control.

My biggest fear is that I then become known as a label and not as a person, because I am defined by my illness. Now, if I have a broken leg, I would never be defined by the man (with the broken leg)…but I’m defined as a mental case. (M)

 

Coping: Safety Behaviours

Some participants were concerned about being the target of stigma and engaged in concealment, secrecy or self-isolation efforts in a bid to prevent this happening.

I definitely think the stigma is probably the reason I’m staying at home now, more than the OCD. Because I have, I have kind of overcome some of the OCD problems (B)

All participants reported that at times they avoided an association to the part of their identity that included mental health difficulties. One participant described presenting themselves differently in public to how they feel internally.

If you met me outside of here, you’d find it very hard to believe that I suffer from depression. It’s been said to me actually several times. I would be a very happy person in the, as I appear to people. (A)

 

 Coping: Coping Processes

In order to cope with self-stigma, some participants spoke about self-acceptance. Participants spoke about dropping safety behaviours and understanding they were ineffective as a means of self-protection.

I’m lucky that two are coming together for me: getting an understanding of my illness and self and understanding coming together…I realised what was wrong with me, I spent most of my life trying to avoid showing it (D)

Those who received talk therapy viewed this as an important factor in fostering self-acceptance.

Well, I would have…attended (the Psychologist) here and I have to say it’s been life changing…I would use the description, I would have very often just held up a mirror, you know, and reflect back… it was all about changing the way I was thinking about myself, viewing myself, and personal development, and it was life changing. (M)

For another, self-acceptance included the allowance of having a bad day and having a distinct strategy for coming through it.

You know… I allow myself one pyjama day. I don’t call it a depressed day… I can play computer games, I can listen to….the radio anyway, I can bring all my food up to bed…. But that’s it then (V)

 

Coping: Need for Mental Health Education

There was a consensus among the cohort that stigma was rooted in a lack of public understanding about mental health. Participants considered that greater public and professional mental health education would reduce stigma and minimise personal distress.

It’s like, you know from a young age not to touch the stove or whatever coz you’ll get burned, so if they learned from a young age not to make fun…. education is key…so the prevention of people being made fun of. (B)

It was considered that GPs could improve their understanding about how to work with mental health, to prevent feelings of stigma in those who use their services to access support.

And the doctor as well…he was talking about football… and then I said depression and he was physically…it was like, I had something that, em, shocked him or was contagious that he didn’t want to have…. It made me uncomfortable. (D)

 

Discussion

This study provides some insight into how mental health stigma is experienced by a cohort of service users, how they cope with it, and what they feel needs to be carried out to reduce its prevalence.

Participants experienced mental health stigma in various domains. This occurred within the community and interpersonal relationships, both through others’ direct behaviours (e.g. explicit invalidation of mental health) and in subtler acts (e.g. the language used to talk about mental health).

Furthermore, participants reported perceived stigma when engaging in professional support. This occurred in GP consultations and also within the mental health services. Participants reported feeling stigmatised in their perception of society’s view that mental health problems are not as serious as physical health problems. They felt this was evident in resource shortages and long-wait lists in mental health services. These accounts provide a novel insight into how one might perceive mental health stigma when actually receiving professional support.

The experience (and consequent expectancy) of stigma had two main impacts: the internalisation of stigma, and loss. Participants internalised public stigma as postulated in Corrigan and Watson’s model. Participants were shameful and self-blaming, aligning in part with Corrigan and Watson’s model (as there were implications for self-esteem, but anger and indifference were not evidenced).

There were losses associated with mental health stigma. Professionally, participants felt they were treated unfavourably by prospective employers. Participants also felt an impact on their human rights both in the legal and the welfare systems. Furthermore, there was a perceived loss of control among participants. They felt unable to shape others’ opinions of them against the weight of the expected stereotypes associated with their mental health diagnosis.

In the face of stigma, participants developed coping responses: safety behaviours and, at times, self-acceptance. Participants talked about maintaining a clandestine attitude regarding their mental health status, keeping this part of their identity secret to avoid being stigmatised. They reported these measures were ineffective, aligning with previous research on the futility of concealment efforts as a means of self-protection. 20,21,22

Participants talked about self-acceptance and personal coping strategies. Talk therapy was considered by some participants as useful in helping them expand their identity beyond that of a ‘patient’ with a ‘diagnosis’. This finding aligns with previous research on the role of identity in buffering against self-stigma.25 It also points to the effective role that talk therapy can have for those struggling with this sense of identity following experiences of mental health stigma.

 A number of recommendations for the future are highlighted in the narratives of participants. Stigma was felt to be rooted in public misunderstanding of mental health. To target this, all participants wanted education:; for themselves, for GPs, for the public, and for institutional entities such as the social welfare service.

The strengths of this study include the rigorous thematic analysis and the use of focus groups, a well-validated technique for capturing qualitative data.30,31 The use of focus groups over one-to-one interviews reduced the likelihood that service users would respond to the facilitators as clinicians rather than researchers.32 Focus groups were therefore seen as the most appropriate method of data collection for casting participants in the role of ‘experts’.

The limitations of this study include the small sample size and the use of heterogeneous participants in terms of diagnosis, age, and social status. As this is a small-scale study, it is not possible to generalise the findings as representative of all Irish mental health service users. Whilst the study was interested in capturing trans-diagnostic stigma, this approach may simultaneously have also lost the nuanced stigma that occurs between diagnoses (with schizophrenia being the most commonly stigmatised condition).33

Acknowledging these limitations, this study provides an insight into an under-researched area in Ireland. It provides direction for further research in a number of ways. Firstly, larger scale research employing service users from AMH services nationwide would permit generalisability of findings. Secondly, similar research specifically exploring different diagnoses, age, and social status may elucidate a clearer representation of whether and how stigma is experienced by different cohorts. Finally, an empirical exploration of the experience of stigma and coping processes would be an appropriate and complimentary next step.

Authors

Dr. Lucy Smith* (M.Sc., Ph.D., Ph.D. in Clinical Psychology, Dip. Humanistic and Integrative  Psychotherapy). Clinical Psychologist, Psychotherapist, and Head of Counselling, University of Limerick, Castletroy, Limerick. Email: Lucy.Smith@ul.ie

Mr. Eric Byrnes (M.Sc.). Psychologist in Clinical Training, University College, Cork, College Road, Cork.

Ms. Rachel Glennon (M.Sc). Assistant Psychologist, University of Limerick, Castletroy, Limerick. Email: r.glennon1@outlook.com

 

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