Abstract
Goffman applied the term stigma to any condition, attribute, trait or behaviour that symbolically identified the bearer as culturally unacceptable or inferior with consequent feelings of shame, guilt and disgrace. 1 Stigma may be related to the expectation of being stigmatized and/or the actual experience of discrimination. 2 Psychiatric stigmatization refers to the incorrect and inappropriate association of mental illness with something disgraceful or shameful. It often involves the inaccurate and hurtful representation of people with mental illness as violent, comical or incompetent.
Stereotypes and stigma have been noted to be inherent in our social structures. 3 , 4 While stereotypes may seem harmless when related to people we know, or as a way of organizing thoughts and knowledge, the danger arises where people take these stereotypes to be ubiquitous reality. Research suggests that psychiatric stigmatization can cause additional burden and difficulties including lack of confidence, low self-esteem, 5 more restricted social networks, 6 and reduced quality of life. 7 Stigma is now recognized as the most significant challenge for persons with mental illness living in the community. 8
Most studies on stigma have focused on public attitudes and beliefs about people with mental illness. 9 – 11 Much less research has involved personal experience of stigma among people with mental illness 12 , 13 or their quality of life. The present study aimed to examine the experience of stigma and discrimination among people with mental illness living in the community and their satisfaction with their quality of life.
METHOD
Subjects
This study was conducted within a large community mental health service in a mixed urban and rural setting covering the Waikato/midland region in New Zealand. The study was publicized within the service through clinicians, clinics and accommodation providers, and patients were invited to participate. Data collection ceased once 100 participants had been enrolled.
Procedure
Consenting patients were asked to complete the stigma and discrimination questionnaire 12 and quality of life self-assessment inventory. 14 Demographic and diagnostic characteristics were also obtained and were supplemented and/or verified from significant others and the medical records as deemed appropriate.
The stigma and discrimination questionnaire was modified to suit the New Zealand population and some culturally specific questions were added. The ‘stigma’ section includes 10 questions about interpersonal experiences of people with mental illness. The ‘discrimination’ section contains 13 items intended to explore the extent to which people with mental illness had experienced discrimination in activities such as renting an apartment, getting a job, etc. Participants were asked to rate the extent of each experience on a 5-point scale from ‘never’ to ‘very often’. Participants were encouraged to give additional information and elaborate or make comments on their ratings as appropriate and also to indicate if questions were not applicable.
The quality of life self-assessment scale is a 100-item inventory that covers 11 domains including housing, housing environment, household and self care, knowledge and education, leisure, physical health, contacts, work, inner experiences, community services and dependence. Participants were asked to circle items in the inventory reflecting areas in their lives that were currently judged to be unsatisfactory. Subjects were encouraged to elaborate or make comments about aspects of items rated as unsatisfactory and about ways to achieve improvement.
RESULTS
Demographic and diagnostic characteristics of participants are summarized in Table 1.
Demographic characteristics of participants (n = 100)
Stigma
Almost three-quarters (73%) of participants sometimes or often avoided telling others that they suffered from a mental illness. Fifty percent felt that they were shunned or avoided by others when it was revealed that they had a mental illness. Sixty-two percent noted that they had been treated as less competent by others once their illness was known. Four-fifths (79%) had been in situations where they have heard others say unfavourable or offensive things about people with mental illness. About two-fifths (39%) reported that they had been advised to lower their expectations for accomplishments in life because they have a mental illness. Sixty-two percent had read or seen stigmatizing media comments or depictions of mental illness. More than three-quarters (79%) had worried that others would view them unfavourably because of their mental illness. The majority reported that friends were understanding and supportive.
Half of Maori participants (Polynesian indigenous New Zealanders) felt they had been told that they were mentally ill because they had violated Maori ‘tapu’ (sacred rules and values) and all of them preferred to have mental illness than be told they had a ‘makutu’ (Maori curse).
Eight percent of participants preferred to use the term ‘consumer’ and about one-quarter preferred the term ‘patient’ to describe themselves. About one-third preferred the term ‘client’ and 15% chose other terms such as ‘service user’, ‘survivor’ or ‘recipient of mental health treatment’ to describe themselves. Twenty percent were undecided.
Discrimination
About one-quarter (23%) reported that they had been turned down for a job and 17% had difficulty renting apartments. A similar percentage were excluded from volunteer or social activities outside the mental health field (11% within mental health field). Twenty percent were turned down for health insurance coverage and 22% had the fact that they have a mental illness used against them in legal proceedings. Fifty-eight percent avoided indicating on written applications for jobs, licences, housing and school etc, that they had mental illness for fear that the information would be used against them. Sixteen percent of participants had difficulties getting work or pursuing education when people discovered that they had a mental illness.
Seven percent indicated that they had been denied mental health treatment because their health insurance was insufficient for them to pay the cost of treatment. Ten percent reported that they were denied educational opportunities when it was revealed that they were consumers.
Sixty-three percent reported that co-workers and supervisors at work were supportive when knew about their illness. Four percent reported that they were denied a passport or driver's licence. Forty-four percent of the respondents reported that they were treated with kindness and sympathy by police officers when they learned that they were consumers.
Quality of life
Table 2 shows the most frequently cited items of dissatisfaction. There was a great deal of dissatisfaction with a number of quality of life items including relationships, pleasure from life, and inner harmony and self-fulfilment. Nearly 20% of the participants were unhappy with the appearance and size of their house, heating, bath and shower, peace and quiet, privacy and shopping, food and diet, and house cleaning. Thirty percent and 27% rated as unsatisfactory their relationships with parents and other relatives, respectively. One-third (33%) were unhappy with sexual relationships and about one-quarter (26%) with friendships with the opposite sex. Thirty percent were dissatisfied with inner harmony, 34% with pleasure from life and self-fulfilment. Nearly one-third were dissatisfied with their sense of identity, being with others, dental care, exercise, and finances and savings. Twenty-four percent of participants considered love experiences, feeling needed and enjoyment of things as being unsatisfactory. About one-third (34%) were unhappy with their sleep, 24% about travels and 32% about holidays. Feeling understood by others was rated as unsatisfactory by nearly 40% of participants.
The three most cited areas of dissatisfaction (in order)
DISCUSSION
Stigma
The study shows that stigma and discrimination are perceived and experienced in a wide range of situations by psychiatric service users. This is consistent with other research findings. 12 , 13 Most participants were concerned about their experience and felt that they were adversely affected in some ways. The majority reported concealing the nature of their illness to others. This is not surprising given how stigma can lead to isolation 1 and low self-esteem. 5
Public recognition of mental illness may be improving, but fears about potential violence and desire for social distance are common, 11 , 15 often aggravated by the methods of the media. 16 Crisp et al. suggested that social distancing maintains “a continuing lack of familiarity” with mentally ill people and their experience and partly contributes to their social isolation. 11 We found that half of the participants felt that they were shunned or avoided by others and about two-thirds had read or seen stigmatizing media comments or depictions of mental illness. Beliefs that those with mental illness are dangerous, hard to talk to and unpredictable are prevalent among the public. 11 It is hardly surprising that nearly 80% of the participants in our study worried that others would view them unfavourably because of their mental illness. However, we found that some aspects of the perception of illness and stigma were not always negative. For example, the majority report that they found friends who knew about their illness were understanding and supportive. Two-thirds reported that co-workers or supervisors at work were supportive. Nearly half the respondents reported that they were treated with kindness and sympathy by police officers who were aware that they had a mental illness. It would seem that, for many, experiences involving people from closer social and familiar circles were generally more positive. It is difficult to interpret the findings concerning the police officers. If only half were treated with kindness and sympathy, what about the other half? It would be of interest to examine this issue further in a context of ongoing collaboration between mental health services and police departments.
Stigma can cause stress and create barriers to seeking psychiatric treatment. 8 Some participants made comments about how they even tried to avoid or refuse help for fear of further stigmatization. Stigma can restrict social support, opportunities for education, employment and housing. 6 We found that about one-quarter reported being turned down for a job for which they were qualified and 17% had difficulty renting apartments or finding other housing. Many were excluded from volunteer or social activities both within and outside the mental health field and some were denied educational opportunities. Fear that the fact they have mental illness will be used against them was a common theme among nearly two-thirds of the participants and the reason for avoiding indicating that they have mental illness on written applications for jobs, licences, housing and school. It is also of note that nearly one-quarter reported that such information was used against them in legal proceedings.
In our sample, 16% reported having difficulties getting work or pursuing education because of their mental illness. Nearly 60% were not employed and were recipients of some kind of benefit, 28% did not complete high school and only 10% were graduates or held a professional degree at the time of the study. Many of the participants were relatively high-functioning and only 21% were living in supported accommodations. The reported unemployment figures are quite striking when the overall unemployment rate in the nation is less than 5%.
Despite the current popularity of terms such as consumer, client and service user, recent studies have suggested that people prefer to be addressed as ‘patients’. 17 We asked the participants to state the preferred term they would like to use to describe themselves. There were varied responses, with about one-quarter of respondents preferring the term patient and about one-third endorsing the term client. Twenty percent were undecided. It is of interest that only 8% of participants preferred the term ‘consumer’, which is the term most commonly used in New Zealand by healthcare providers and advocacy groups. It is also worth mentioning that among the reasons given for choosing the term ‘patient’ was that it was perhaps less stigmatizing as it would make them feel no different from ‘other patients’ with medical and surgical problems. None of the Maori participants endorsed the term ‘tangata whaiora’, which means people with experience of mental illness, who are seeking wellness or recovery.
We asked Maori participants culturally specific questions. Half of them felt they had been told that they were mentally ill because they had violated Maori ‘tapu’ (sacred rules and values). All of them preferred to have mental illness than be told they had a ‘makutu’ (Maori curse). Maori have a holistic concept of health and wellbeing and believe four dimensions must all be present and integrated: spiritual, physical, family and mental. 18 In Maori culture, mental illness can be seen as a visitation from ancestors or related to something that ancestors may have done in the past which has affected them. It is believed that violation of ‘tapu’, such as walking into sacred grounds (cemetery and graves or digging up something from a grave without knowing) can cause a mental illness. A ‘Tohunga’ or spiritual healer may be required to do a blessing or relieve the ‘makutu’.
Quality of life
Measurement of quality of life is generally regarded as an essential element in the evaluation of the merit and effectiveness of psychiatric treatment and community mental health services. 19 Many patients in our sample considered that their quality of life was unsatisfactory in a number of areas. Dissatisfaction with the quality of relationships and dissatisfaction with feeling understood by others were the most frequently identified areas. These findings indicate that feelings of alienation and devaluation by significant others were common. It is also possible that others tend to underestimate the extent to which their interactions with people with mental illness are experienced as lacking in understanding, empathy or support. Two-thirds of participants were unhappy with the quality of relationship with their parents and other relatives. A similar number identified relationships with the opposite sex and sexual relationships as being unsatisfactory. Concerns about feeling understood by others seemed to be shared among men and women, but dissatisfaction with sexual relationships assumed primacy among men, particularly those who were younger, single and unmarried. Sleep seemed to be a problem for people with depression, particularly women. Dissatisfaction with pleasure from life, inner harmony, experience of love, feeling needed, and self-fulfilment were also prominent. Many were unhappy with their finances and savings, dental care, food and diet, exercise, travels and holiday. There is little doubt that stigma increases the negative impact on peoples’ lives and social outcomes, probably through its effects on self concept and self-esteem. 7 , 20
CONCLUSION
Stigma remains a fundamental issue that needs to be considered in the management of people with mental illness. It needs to be further addressed if services wish to improve the effectiveness and efficiency of community treatment or recovery-oriented policies. Similarly, measurement of the quality of life of patients with mental illness should be considered as part of the assessment of recovery and the biopsychosocial treatment modalities we provide.