What employment means for people with schizophrenia

Severe mental illnesses are among the most common causes of disability in the working-age population around the world.1 One of these illnesses is schizophrenia, which affects 20 million people worldwide.2

In New Zealand, a total of 18,096 individuals aged 18 to 64 had a schizophrenia diagnosis recorded on or before December 31, 2015. This is equivalent to a prevalence of 6.7 per 1000 people (0.67 per cent). Prevalence was higher in indigenous Māori (3.36 per cent), compared to non-Māori (2.86 per cent).3

The chronic relapsing nature of the illness can be disruptive and may affect the employment of people with schizophrenia.4 Research has found high unemployment rates among individuals with this disease.5,6,7,8,9,10

Chronically unemployed people with schizophrenia are reported to exhibit poor pre-morbid functioning, cognitive dysfunction and increased negative symptoms such as lack of motivation, reduction in spontaneous speech and social withdrawal.1,8,11,12 Unemployment in people with schizophrenia is also economically costly from a societal point of view.13

Despite high unemployment rates among people with schizophrenia, there is evidence that they want to work.4,5,7,10,14 Employment provides not only the means to independent living and social integration, but also alleviates the impact of symptoms and cultivates a positive self-image, self-esteem and self-efficacy. All of these promote recovery and improve quality of life.4,10,15

However, various studies have identified barriers to employment for people with schizophrenia. Many of these barriers are similar to those faced by the long-term unemployed.16 Those with schizophrenia also face the added burden of their illness.6,7,17,18

Several studies have proposed solutions to overcome barriers to employment for people with schizophrenia. In addition, a variety of vocational rehabilitation programmes have been developed and implemented over the past few decades in New Zealand and overseas to enhance the vocational capacities of people with schizophrenia.5

One such programme, known as Individual Placement and Support (IPS), has been recommended by various studies as a more effective and integrated approach to helping people with severe mental illness to obtain and remain in employment.12,19,20,21 Although the effectiveness of IPS is well established, implementation of this approach has been challenging and there is still room for improvement.12,21

Schizophrenia and employment

Schizophrenia is a severe chronic mental illness with most patients experiencing relapses during the course of the illness. It is characterised by distortions in thinking, perception, emotions, language, sense of self and behaviour.

Symptoms of schizophrenia are generally described as positive or negative. Positive symptoms refer to what is abnormally present – that is, delusions and hallucinations. Negative symptoms, on the other hand, refer to what is abnormally lacking or absent in the person with a psychotic disorder. These include lack of motivation, reduction in spontaneous speech and social withdrawal.

There may also be a cognitive dimension to the illness, such as difficulties with memory, attention and executive functioning, and a dimension of affective dysregulation, such as depression and manic symptoms.2,18,22

Many studies provide evidence that rates of unemployment are very high among people with schizophrenia.5,6,7,8,10 A large international study, combining data from 37 countries, found that on average only 19 percent of people diagnosed with schizophrenia were in competitive employment (ie working in the regular labour market), with figures ranging from 16.2 per cent to 22.6 per cent, against an average employment rate in the general population of 75-80 per cent.23

Despite high rates of unemployment among people with schizophrenia, there are studies indicating that the majority of them regarded employment as meaningful, and from 55 per cent to 70 per cent were interested in work.4,5,7,10,14

Work is considered to have many advantages for people with schizophrenia, not only in terms of financial gain but also in providing a normalising experience, with improved general and mental health and wellbeing, including better cognitive functioning.9,14,23,24,25,26

It has also been found that those in competitive employment were less likely to relapse and more likely to achieve clinical remission, compared to those who were unemployed.27 One study showed that for people with schizophrenia, employment is correlated with improved social functioning, symptom levels, quality of life and self-esteem.4,6,10,15

. . .  those in competitive employment were less likely to relapse and more likely to achieve clinical remission, compared to those who were unemployed.

Barriers to employment

People with schizophrenia nevertheless continue to encounter barriers to employment. The barriers are associated with the illness itself, stigma, and discrimination from employers, causing low motivation to work and low self-efficacy. Other barriers include concerns about how working will affect benefits, the low expectations of health professionals, limited access to vocational rehabilitation services, and problems with implementing these services at a national level.6,7,14,17,28

Neurocognitive dysfunction is prevalent among people with schizophrenia, which has a strong impact on different areas of functioning, including occupational functioning.29,30,31 Neurocognitive deficits found in people with schizophrenia include social withdrawal, poor social skills, and poor problem-solving skills, all of which act as barriers to employment.6,17 The presence of negative symptoms of schizophrenia are seen as a barrier to employment.4,6,17, 32,33

There is a body of evidence indicating that people with schizophrenia are affected by stigma and discrimination in multiple areas of their lives, especially in employment.6,34

In a European study, more than 40 per cent of participants with schizophrenia reported moderate or high levels of stigma and almost 70 per cent reported moderate or high discrimination.35,36

Discrimination from employers because of the stigma of mental illness was the most commonly cited barrier to getting a job in a study in South London.6,7,9,18,36 In another study in Australia, it was found that stigma and discrimination affected all aspects of employment, including recruitment, workplace relationships and workplace wellbeing, and significantly affected individuals’ ability to obtain and maintain employment.37

Stigma may also have a considerable effect on the motivation to work and self-efficacy of people with schizophrenia. As a result of this, people with schizophrenia may not pursue opportunities fundamental to achieving their life goals.9 Stigma may also cause people with schizophrenia to avoid accessing and using health-care services. An Australian study found low motivation to work and low self-efficacy caused by stigma were barriers to employment among people with schizophrenia.38

A number of studies report the loss, or feared loss, of benefits as a powerful barrier.36,39,40 A UK study found the social welfare benefit system in that country had a negative impact on people with schizophrenia.9

Lastly, health-care professionals and evidence-based rehabilitation services may unintentionally contribute to the barriers people with schizophrenia face in gaining and maintaining employment. There is evidence in the literature that rehabilitation is often not included in the care plans of people with schizophrenia, which reflects the low expectations of health-care professionals.5 A UK study found that health professionals’ low expectations of their patients’ capability were evident in low recognition of employment as a desired outcome for people with schizophrenia.9 People with schizophrenia have also reported a lack of encouragement to work from health-care professionals.18

There is evidence in the literature that rehabilitation is often not included in the care plans of people with schizophrenia, which reflects the low expectations of health-care professionals.

Various studies have shown that there is limited access to evidence-based rehabilitation services and in many countries these services are not implemented nationally.6

Overcoming barriers

Various studies have offered methods of overcoming these barriers to employment.7,19,41,42 Improving medication adherence helps people manage symptoms and prevents relapse, enabling them to function occupationally and socially.43 Encouraging a change in the culture of workplaces towards social inclusion of people with severe mental illness is an important method of reducing stigma and discrimination.41

Research has also found that stigmatising attitudes and behaviours are significantly reduced among people who have engaged in activities involving contact with someone who has experienced severe mental illness.35,42 Employers who have had interactions with people with severe mental illness are more willing to hire a person with such a diagnosis.44  Employers’ attitudes can also influence whether reasonable job accommodations are made for staff with disabilities.41

New Zealand was one of the first countries in the world to set up a national programme to improve the attitudes of employers, health-care professionals and the public to people with mental illness. The anti-stigma programme – which started in 1997 and is underpinned by the social model of disability and the power of contact — is called “Like Minds, Like Mine” (LMLM).42,44 An evaluation of public attitudes since the programme started found that attitudes towards people with severe mental illness in the target group of 15 to 44 year-olds had improved significantly, especially among Māori, Pacific, Asian and young people.42,45

Another study found education of employers and the public was an important way to support people with schizophrenia and to prevent stigma and discrimination in the workplace.19 It recommended more funding for the development of evidence-based education resources, and that education should start in schools to challenge negative stereotypes.19,41  Governments should also ensure the social welfare benefit system does not act as a disincentive to finding employment.9,14

Another proposed solution is educating all health-care professionals involved in the treatment and management of people with schizophrenia about the relationship between mental health and employment.9,41 Treatment decisions made by health-care professionals should not negatively affect the work aspirations of people with schizophrenia and should make employment a desired outcome.18 Health professionals were also essential to strengthening the motivation to work and the self-efficacy of people with schizophrenia, especially when a trusting therapeutic relationship was established, including advice and ongoing support.6

Vocational rehabilitation services should be made more accessible and be implemented nationally. A national plan, coordinating interventions across departments and funders, will aid successful implementation.9,14

Vocational rehabilitation services

Over the past few decades, a variety of vocational rehabilitation programmes have been developed and implemented in New Zealand and overseas for people with severe mental illness. These include supported employment, eg IPS (Individual Placement and Support); traditional vocational rehabilitation (TVR) programmes such as sheltered employment; psychosocial rehabilitation including prevocational training, and transitional or trial employment; and volunteer placements.

In sheltered employment, people with severe mental illness work together, usually in a group setting, on factory type work (eg assembling or packaging a product), which involves increased peer support. However, the drawbacks in this kind of employment are the lack of contact with non-mentally ill co-workers and the inability to tailor the job to the individual’s interests.20,28

Improving medication adherence helps people manage symptoms and prevents relapse, enabling them to function occupationally and socially.

In contrast, psychosocial rehabilitation includes prevocational training, which involves teaching work skills and job search skills; transitional or trial employment is part-time work at less than minimum wage; and volunteer placements see participants paid at a minimum wage.

All of these interventions follow the traditional stepwise “train then place” approach. They adhere to the key principle that a period of preparation is necessary before entering competitive employment.5,20,37,48,49 Competitive employment is defined as working in the regular labour market and being compensated at, or above, the minimum wage or otherwise prevailing wages for at least one day.50

A useful form of rehabilitation that helps people with severe mental illness to obtain competitive employment is supported employment, standardised in the IPS model.12,14,18,21,46,51 This approach differs from the first two approaches as it is based on the “place then train” philosophy. It incorporates eight key principles that have been well researched with a validated fidelity scale used worldwide for quality improvement purposes.52

These principles are:

1. 1.  Zero exclusion — every individual who wants to work is eligible for services, regardless of “readiness”, work experience, symptoms or any other issue.
   2. Focus on competitive jobs in integrated community settings that pay competitive wages.
   3. Rapid job search, usually starting within a month of enrolling in the programme.
   4. Respect for the individual’s job preferences, rather than favouring the judgment of employment specialists and mental health-care providers.
   5. Provision of time-unlimited and individualised follow-along support after work is obtained to facilitate maintenance or transition to another job.
   6. Integration of mental health and employment services to ensure coordinated delivery and mutual understanding of the importance of work as a goal.
   7. Personalised benefits counselling to inform the individual about the impact of work on any disability benefits they may receive or be eligible for.
   8. Systematic job development, maintenance of relationships with various employers and building an employer network.12,14,21,46,50,53

Comparing vocational rehabilitation services

Studies have shown that TVR is not effective in helping people with severe mental illnesses find and maintain competitive employment.48 It is not effective in developing work skills, it promotes dependency and deters clients from finding competitive employment.20 One study of the vocational activity of 149 clients over 18 months found people with severe mental illness such as schizophrenia enrolled in TVR programmes tended to have higher dropout rates due to the delay between initial training and job placement.54 Also, the training provided may not correspond to the jobs available to the individuals. Lastly, most TVR programmes are time-limited — services are discontinued after an individual has kept a job for 90 days.47

Several randomised controlled trials have demonstrated the effectiveness of IPS over TVR,55,56,57 and meta-analyses over the years have confirmed this finding. One meta-analysis showed it was superior to TVR in terms of rates of competitive work.5,20 Another found that IPS participants gained employment faster, maintained employment four times longer during follow-up, earned three times the amount from employment, and were three times as likely to work 20 hours or more per week when compared to TVR.57

Longitudinal studies also show that half of all individuals enrolled in IPS become steady workers, maintaining employment for 10 years or longer compared to individuals enrolled in TVR.28,57

In New Zealand, case studies at five district health boards (DHBs) with IPS programmes were conducted from 2015 to 2018. These DHBs were Auckland, Counties Manukau, Waikato, Lakes and Taranaki. The case studies showed that 4 per cent of people seen by DHB mental health and addiction services over a three-year period also received IPS, which is higher than for TVR. IPS programme reach in teams with an IPS employment specialist assigned was higher but averaged only 10 percent.58

While programme reach within teams with an assigned IPS employment specialist varied slightly across ethnic groups among the five DHBs, it was consistently lower among indigenous Maori, who have a higher estimated population prevalence of schizophrenia.59

In New Zealand, IPS has been operating for more than 10 years but coverage across the country is patchy

The effectiveness of IPS for helping people with severe mental illness into employment has been well established since at least the turn of the century. It has expanded across 19 high-income countries outside the United States (US) over the past 20 years, including Australia, Belgium, Canada, China, Czech Republic, Denmark, France, Germany, Iceland, Ireland, Italy, Japan, New Zealand, Netherlands, Norway, Spain, Sweden, Switzerland and the UK.18,46,55

However, there are challenges in its implementation. These include inadequate funding and the lack of policy for large-scale implementation.52 In the US, IPS programmes are funded through a complex blending of state and federal government sources, Medicaid, and vocational rehabilitation payments. Similar problems exist in England where IPS programmes are purchased mainly by regional health and social care commissioning groups and local government. In Australia, there is a single national purchaser of disability employment services but it is only recently that they have officially encouraged the implementation of evidence-based approaches such as IPS for people with severe mental illness.60

In New Zealand, IPS has been operating for more than 10 years but coverage across the country is patchy (see panel ‘IPS in New Zealand’) due to the aforementioned challenges and access is inequitable for Māori.  Nevertheless, there is opportunity for change, with a greater focus in government policy on mental health and a plan for cross-government policy to promote service integration.60,61

In 2021, the New Zealand government announced a 10-year plan, Kia Manawanui, to transform its approach to mental wellbeing, building on the agenda set by He Ara Oranga: Report of the Government Inquiry into Mental Health and Addiction.62 The plan focuses on national actions that government agencies will lead and system changes that the Government can drive.63

These include having a coordinated approach to purchasing IPS for people with severe mental illness, establishing technical assistance to support IPS implementation and expanding access to IPS. Improving access to IPS is recommended in a series of reports, most recently the 2018 OECD country report, Mental Health and Work: New Zealand, the report of the Welfare Expert Advisory Group and the Ministry of Social Development (MSD) Working Matters disability employment action plan. 60,61,64,65,66

Attention to the needs and aspirations of Māori are needed to address inequities in IPS access.60,61 Recent Māori wellbeing strategy documents highlight sustainable employment and economic security as key to Māori wellbeing.66,67,68

However, employment and economic security sit alongside a range of culturally-grounded aspirations including cultural identity, participation in te ao Māori, and the health and wellbeing of collectives, including whanau.66,67,68

The importance of collaboration to support employment opportunities for people with mental illness was also emphasised in the Ministry of Health’s plan setting out the principles and a framework for meeting mental and social wellbeing needs as New Zealand responds to and recovers from the COVID-19 pandemic.58

Conclusion

The inability to obtain and maintain employment can be psychologically and economically devastating to people with schizophrenia. It also has a negative impact on society as a whole. Rates of competitive employment among people with schizophrenia are low. However, many people with schizophrenia view employment as worthwhile and express a desire to work, due to its many clear benefits.

 Nonetheless, people with schizophrenia continue to encounter a multitude of barriers to employment. Proposed solutions to overcome these barriers include education of employers and the public about mental health, education for all health-care professionals involved in treating and managing people with schizophrenia and improving access to evidence-based vocational rehabilitation.

In terms of vocational rehabilitation, the relative effectiveness of IPS over TVR to improve the work outcomes in people with severe mental illnesses has increased over time as the programme has developed and been implemented in New Zealand and overseas.

As the programme improves and expands in New Zealand, attention to and research on cultural responsiveness, Māori-led approaches and equality of access will be beneficial. Also useful will be research on costs and benefits and the scale of the programme’s positive impacts on employment and other outcomes in the New Zealand context.

 

Alex Pajel, RN, BSc(nurs), PGDip (occupational health & safety), is a certified workplace health and safety professional, and works as a mobile vaccination team lead at Canterbury District Health Board and as an occupational health nurse at Canterbury Linen Services (a subsidiary of Canterbury DHB).) This article is based on a 2021 assignment for a postgraduate diploma in occupational health and safety at Otago University.

This article was reviewed by Anthony O’Brien, RN, BA, MPhil, PhD, associate professor of nursing at Te Huataki Waiora — School of Health, Waikato University. 

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