Mental Illness

An Evaluation of ‘Work’ for People with a Severe Persistent Mental Illness

Josephine Pryce

Published online: 11 August 2013 # Springer Science+Business Media New York 2013

Abstract The idea of employment for people with a severe persistent mental illness (SPMI) has great merit and much research has been conducted which identifies the value of such initiatives. However, it seems that the success stories remain limited. This paper draws on the literature and research findings therein to suggest that the issue of employing someone with a SPMI is complex and that the reality of being able to achieve long-term satisfactory outcomes for all parties involved in employment relationships needs careful consideration. It contends that the idea of people with SPMI gaining meaningful work is important but that in doing so, there is a need to review the meaning of ‘work’ to one which incorporates a broader view of ‘occupation’ and inclusion of ‘daily activities’ as work. In addition, this paper emphasises the necessity to take an integrated approach which considers the needs and capabilities of the individual with SPMI and so, keep everyone well and safe, and improve individual’s quality of life. In light of this, this paper presents a diagram that articulates the various domains which need to be considered if someone with a SPMI is to engage with meaningful and sustained ‘work’.

Keywords Severe mental illness . Employment . Daily occupational activities . Quality of life

Introduction

Employment for people with severe persistent mental illness (SPMI) is considered to be an important aspect in the process of recovery and maintenance of quality of life (Argentzell et al. 2012; Bond and Campbell 2008; Crowther et al. 2001; Eklund et al. 2004; Kukla et al. 2012). Studies have attested to the successful participation of individuals with SPMI in the labour market (Bond and Campbell 2008; Eklund et al. 2001; Priebe et al. 1998). Despite these successes, statistics from across the world indicate that the employment rate for people with SPMI remains low. Typically, employment rates for people with serious disorders, such as schizophrenia, have remained low at around 15 % (Callard et al. 2012; Eklund et al. 2001; Mueser et al. 1997). It is estimated that in the United States 10–25 % of individuals with mental illnesses are part of the labour force (Rosenheck et al. 2006) and in Europe, the figure

Employ Respons Rights J (2013) 25:239–255 DOI 10.1007/s10672-013-9229-7

J. Pryce (*) School of Business, James Cook University, P.O. Box 6811, Cairns, Qld, Australia 4870 e-mail: [email protected]

is 25–40 % (Crowther et al. 2001). In Australia, The National Advisory Council on Mental Health (2010) noted that at some stage of their life, 45 % of Australians in a 12 month period experience a mental illness, with 3 % of the population affected by severe mental illness. It is noted that “in most cases [severe mental illness] has a profound effect on the ability of the person to live an independent, productive and satisfactory life, and impacts heavily on their family, friendship network and the community” (National Advisory Council on Mental Health 2010, p. 6). It is therefore, timely to review understanding and knowledge to date in relation to employment of people with SPMI, and evaluate the issues, challenges and feasibility of such approaches, in an attempt to try and explain why it is difficult for people with SPMI to attain meaningful and sustained work.

Initiatives and efforts to encourage and support individuals with SPMI to participate in employment are ongoing. The literature pertaining to this topic is growing with the most prolific research in this area being that of Eklund and her team with studies ranging from 2001 to the present. While the research by Eklund et al. has been principally from the perspective of the occupational therapist and located in Europe, it has been invaluable in shedding insight into many aspects of the lives of people with SPMI. These insights include perspectives on occupational factors, health-related variables, personality dimensions, qual- ity of life, occupational roles, community based psychiatric services, occupational values, time-use, work, daily occupations, well-being, occupational engagement, satisfaction and social networks. Eklund et al. have also explored the various relationships amongst these aspects and contributed extensively to understanding and knowledge of people with SPMI.

Even so, there is a lack of a holistic overview which captures the various aspects of the lives of people with SPMI and positions the role and importance of work within that model. This paper seeks to develop such an integrated overview by examining the current literature and research which focuses on employment of people with SPMI; identifying factors affecting people with SPMI in terms of the possibilities and realities of them engaging with work; and, presenting a diagram which encapsulates these aspects within the various domains of the life of the individual with SPMI. The diagram is viewed as a holistic and integrated approach and as a preliminary and potentially powerful tool, subject to further investigation, for understanding and facilitating the options for people with SPMI to undertake work. In addition, it will provide a framework for future research. Equally, the diagram is of value as it presents insights into the factors associated with work for people with SPMI, and so, can inform strategies for approaching and managing the participation of people with SPMI into the labour market or work in general.

This paper predominantly adopts a narrative review of the literature to determine the current state of knowledge on employment for people with SPMI. Narrative review refers to “when the literature is reviewed as a means of specifying what is already know in connection with a research topic” (Bryman 2012, p. 111). The literature was critically examined for its contribution to understanding and knowledge of employing people with SPMI, and identi- fying factors which the research in the literature reported as important.

Toward an Integrated Approach

To date, no study could be identified which has focused on or presented an integrated approach that captures the various domains and elements which affect the lives of a person with a SPMI and truly considers the long-term reality of these individuals engaging with meaningful employment. Bejerholm and Eklund (2004) argued that because of the complex nature of mental illnesses, and the effect of person-environment on human occupational

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patterns, contextual factors need to be considered when exploring occupational performance. Drawing on the work of Law et al. (1996), they emphasised that occupation, environment, and personal domains dynamically impact on occupation and all these aspects should be considered. The work described by Law et al. (1996) depicts the relationship between the three domains of: The Person; The Occupation; and, The Environment, as inter-related circles, which influence occupational performance. The model, often depicted as a Venn diagram, has been used in various contexts. For example, Strong et al. (1999) used the model to examine three individual case studies (an elderly man with a hip injury, a nine-year old girl with cerebral palsy and a man with schizophrenia) in relation to occupational perfor- mance issues. The model allowed them to consider “the complexities of human functioning and experience” (ibid, p. 122). For these reasons, it is thought that the model is suitable to use in this paper as it explores the complexities of issues facing individuals with SPMI in relation to work.

Beyond the domains noted above, various authors contend that a balance between these domains of person, environment and occupation leads to improved health and well-being (Bejerholm and Eklund 2004; Eklund et al. 2003; Wilcock 2006; Zemke and Clark 1996). It is in light of this contention and the relationships described within the literature, a fourth domain is proposed here: Quality of Life (health, well-being, and satisfaction). Further to which, it is contended that these four domains can be represented by the diagram of ‘Aspects of Work for People with SPMI’ (Fig. 1).

The purpose of this paper is not to present a full examination of the various aspects of the lives of individuals with SPMI. Rather the intention is to critically review the literature for people with SPMI in relation to their ability and capacity to engage with work and identify aspects of the individual which impact on them being able to do so in a sustained and positive way. To this end, it has been argued above that occupation, environment, and the person are key aspects which need to be reviewed in determining the quality of life for individuals with SPMI. Therefore, these four domains will be used to collate and present a

Fig. 1 Diagram representing aspects of work for people with SPMI

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critical review of the literature so as to determine the potential for use of the integrated approach presented above in future empirical research.

The paper begins by reviewing the literature on each of the domains (occupation, person, environment, and quality of life), and then works toward rationalizing the propensity for relationships amongst these domains. Along the way, the paper argues that the options for individuals with SPMI to undertake traditional work is challenging and limiting, and that because of the nature and complexities of severe mental illnesses, such as schizophrenia, the reality is that it is difficult for individuals with SPMI to work in a sustained, positive and traditional way. The argument is advanced that greater efforts need to be invested in ‘occupa- tion’ rather than ‘work’ for people with SPMI, if better outcomes, such as quality of life, are to be realized. With this as a main contention, the next section discusses ‘The Occupation’.

The Occupation

Law et al. (1996, p. 16) define occupation as a conglomeration “of self-directed, functional tasks and activities in which a person engages over the lifespan . . . [and that occupations] can be considered [as] a component of the individual’s professional activities . . . [and] defined as those clusters of activities and tasks in which the person engages in order to meet his/her intrinsic needs for self-maintenance, expression and fulfillment. These are carried out within the context of individual roles and multiple environments”. According to this description, occupation is a broad term encompassing ‘work’. In fact, the extended research of Strong et al. (1999) uses the model proposed by Law et al. (1996) and identifies ‘work’ as a subset of occupation. They present the case of ‘Spencer’ and discuss his difficulties with his occupation, where his occupation refers to work or a job. In a similar vein, Crowther et al. (2001) identify work as any employment for earnings or other outcome: competitive, transitional, sheltered, supported or voluntary. It is this understanding of work which is adopted in this paper, when reference is made to work, unless otherwise specified.

The literature reports that people with SPMI who work have a better quality of life than non-working people in relation to various aspects of health and wellbeing (Eklund et al. 2001; Van Dongen 1998). At a basic level, employment for people with SPMI means that they have some financial security (Callard et al. 2012). In addition, Van Dongen (1998) found that work provided a distraction from symptoms and contributed to better mental health. Equally, Crowther et al. (2001) noted that employment alleviates psychiatric symp- toms; and, likewise, Strong (1998) showed how participation in meaningful work made clients define themselves as capable and develop roles that were not illness-focused. Furthermore, it is argued that meaningful work improves outcomes by reducing dependency and increasing self-esteem (Crowther et al. 2001); may enhance the recovery process by providing experiences such as self-empowerment and self-actualization (Provencher et al. 2002); and, is essential for personal and social identity (Laliberte-Rudman 2002).

Investigations into work for people with SPMI generally consider three categories of work: competitive employment; non-competitive employment activities; and, no employ- ment activity. Generally, employment and work are used interchangeably with work often meaning competitive employment. With the growing understanding of work for people with SPMI, the meaning of work as a broad term is becoming more evident and the contrast between employment and non-competitive employment activities (or daily occupational activities) is increasingly more pronounced and significant in terms of how it relates to and informs understanding of the lives of people with SPMI. These work-related terms and their impact on people with SPMI undertaking work are explored in the following section.

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Competitive Employment

Competitive employment is defined as work or a job in the community that is paid at least at the minimum wage or market rate and which is open for anyone to apply, i.e. is not specifically retained for people with a disability (Bond et al. 2012; Crowther et al. 2001). Non-competitive jobs can include jobs which have been “set-aside” for prospective workers with SPMI but not for any specific individual or job options where individuals with SPMI can choose from a “menu” of jobs (Bond et al. 2012). In the quest to assist people with SPMI to obtain competitive employment, various strategies have been adopted, most dominantly prevocational training or rehabilitation programs and supported employment.

Prevocational training or rehabilitation programs aim to prepare people with SPMI for entry into competitive employment and are reported to be associated with increased partic- ipation rates in competitive employment (Crowther et al. 2001; Rosenheck et al. 2006). These programs include sheltered workshops, skills training, work crews, transitional employment, vocational assessment and other preparatory activities. With supported em- ployment, individuals are placed into competitive jobs with minimal preparation and are provided with support by employment specialists (Beckers et al. 2012; Rosenheck et al. 2006). The Individual Support and Placement model is considered to be the ultimate type of supported employment as it integrates mental health services with employment services, is based on individuals’ preferences and provides continual individual support (Mueser et al. 2005). In a longitudinal study of 204 individuals with SPMI involved in vocational reha- bilitation programs, the individuals were followed for two years in relation to job satisfac- tion, job tenure, and job preferences (Becker et al. 1996). The study showed that there was a relationship between job preferences with job tenure and job satisfaction such that people who were assigned to jobs that most closely matched their preferences were most satisfied with their jobs and stayed in the job longer. Therefore, the positive outcomes for people with SPMI in undertaking work are evident, as are strategies for the success of such efforts. Yet there remain challenges for sustained efforts and positive outcomes.

Research has indicated that competitive work contributes to satisfaction with daily occupations and better functioning (Crowther et al. 2001; Eklund et al. 2004). Rosenheck et al. (2006) found that people with SPMI who undertook competitive or non-competitive employment had less severe symptoms, improved neurocognitive functioning, and higher scores in relation to intrapsychic functioning (e.g. motivation and empathy). However, they concluded that while clinical problems and poorer neurocognitive and intrapsychic func- tioning can hinder people with SPMI from participating in employment, participation in competitive employment can be encumbered by disability payments and social prejudices. Rosenheck et al. (2006, p. 416) explained that disability payments inadvertently provided “adverse incentives” because recipients feared that they would compromise or lose their payments and benefits if they undertook competitive jobs and that their payments and benefits would be preserved if they engaged in non-competitive employment or jobs “outside the mainstream economy”. This issue adds to the complexities of people with SPMI undertaking traditional competitive, paid work.

Another point for consideration is the attitudes of employers towards people with SPMI. Researchers agree that there is reluctance amongst employers to employ individuals who have a history of mental illness or individuals who use antipsychotic medication (Callard et al. 2012; Long and Runck 1983; Manning and White 1995; Scheid 2005). Callard et al. (2012, p. 80) reported that employment discrimination is one of the “most frequent stigma experiences” for people with mental illnesses. They add that employers with stigmatised attitudes tend to think that people with SPMI have limited cognitive abilities and so are

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reluctant to employ them. Undoubtedly, employer attitudes are paramount in progressing with effective employment integration of people with mental illnesses as they can influence accessibility and inclusivity into the work environment, ensuring that accommodations are made for people with mental illnesses and that they are accepted into the workplace. Strong et al. (1999) reports on strategies employed in the case of an individual with schizophrenia to overcome barriers and constraints in the workplace and improve the quality of the experi- ence for the individual and coworkers. Such strategies and support are noble and commend- able but they require deliberate and ongoing effort, and require further investigation and understanding to determine and showcase best practice in this area of overcoming discrim- ination towards people with SPMI. In the meantime, rehabilitation programs are worthy of consideration.

Some researchers have found that there are aspects of competitive work which are important, such as the social interactions, the camaraderie, the organising character of work, the money earned, the symbolic meaning of work (Bell et al. 1993; Strong 1998); however, it remains unknown what aspects of competitive work are specifically generating sources of satisfaction with daily occupations (Eklund et al. 2004). In fact, some authors have indicated that competitive work may be counterproductive and even stressful for people with SPMI (Scheid 2005). Others suggest that in the case of people with SPMI it is important to replicate conditions to resemble as closely as possible as those of competitive work environments (Eklund et al. 2004). Further, it has been suggested that rehabilitation pro- grams provide challenges with matching competencies for individuals with SPMI (Csikszentmihalyi 1997).

In 2012, Beckers et al. reviewed programs that support employment for people with SPMI and concluded that the Individual Placement Support (IPS) model has become the predominant program over traditional vocational rehabilitation models and that repeatedly better work outcomes are achieved with the IPS. In either case, gaining employment is considered to be an important aspect of recovery for people with SPMI. Beckers et al. (2012) suggest that supported employment programs need to proceed holistically and take the following into account for the recovery process: job satisfaction, psychosocial and spiritual outcomes, and quality of life outcomes. All these factors suggest that efforts for individuals with SPMI to undertake work are met with many and complex challenges, and that there is still much to learn and know about how best to proceed. The literature concurs that while people with SPMI are willing to participate in the competitive job market, the reality of them doing so is limited; and that other work-like activities can equally provide them with a sense of accomplishment, satisfaction, worth and quality of life (Argentzell et al. 2012; Callard et al. 2012). Hence, the notion of ‘occupation’ rather than ‘work’ for people with SPMI is noted, and the following section explores options beyond competitive employment for people with SPMI.

Beyond Participation in Competitive Employment

Employment is only one facet of a person’s gamut of daily occupations (Zemke and Clark 1996). An individual’s day also includes other work such as leisure activities, self-care, household tasks, volunteer work and study (Eklund et al. 2004; Leufstadius et al. 2008). Equally, these work-related activities can apply to people with SPMI and while competitive employment may be preferable and more satisfying, the availability of meaningful daily occupations is becoming recognised as an imperative, especially for community-based mental health systems (Callard et al. 2012; Eklund 2004). In Sweden, this goal has become a stated reform agenda (Eklund et al. 2004). Crowther et al. (2001, p. 204) state that: “There

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are compelling ethical, social, and clinical reasons for helping people with mental illness to work”.

Hence, current scholars agree with Meyer’s 1922 proposal that there is a relationship between health and performance of daily occupations (Bejerholm and Eklund 2004). The quandary remains in that research has indicated that people with SPMI have a tendency to live isolated and be inactive (Bejerholm and Eklund 2004) and understanding about their preferences for daily occupational activities is limited (Bejerholm and Eklund 2004; Nagle et al. 2002). Eklund et al. (2001) examined the relationships between satisfaction with occupational factors (such as occupational status, and total daily occupational status) with health-related variables (such as quality of life, psychopathology, sense of coherence, and perceived control). They found that the relationship between satisfaction with daily occu- pations and quality of life was most significant. Eklund et al. (2001, p. 79) noted that “Work is a highly valued aspect of human life” and concluded that individuals’ daily occupations were important aspects for the quality of life and health of people with SPMI, more so than employment. They emphasised that ‘daily occupations’ is broader than “paid work” and that it is occupations in the broad sense (i.e. representing “a repertoire of daily occupations”) which promote health and wellbeing (Eklund et al. 2001, p. 79). Callard et al. (2012, p. 80) raise concerns that people with SPMI “are under-occupied, experience restricted social participation and limited engagement in leisure activities”. This is an important point as it underscores the need for ‘being occupied’ for people with SPMI, especially in terms of recovery, well-being and quality of life.

In the spectrum of people’s lives, work is one aspect of individuals’ daily lives; other areas include self-maintenance, play and leisure. A definition proffered by Law et al. (1998, p. 83) is that occupation refers to “groups of activities and tasks of everyday life, named, organized and given value and meaning by individuals and a culture, occupation is every- thing people do to occupy themselves, including looking after themselves (self-care), enjoying life (leisure), and contributing to the social and economic fabric of their commu- nities (productivity)”. For individuals with SPMI, everyday life activities such as self-care and leisure can be challenging. Bejerholm and Eklund (2004, p. 43) studied individuals with schizophrenia and reported that “many activities were accompanied with a feeling of emptiness and neutral reflection”. They spoke of “stagnation” and limited “interaction with the outside world” (ibid, p. 43).

Law (2002) acknowledges that participation in daily occupations has a positive impact on individuals’ health and well-being, but in the case of individuals with disabilities, partici- pation is constrained and generally limited to the home, associated with less social interac- tions and relationships, and involves less recreational activities. Nonetheless, Law (2002) espouses the benefits of ‘meaningful participation’, especially in terms of ‘satisfaction’ and ‘balance’ between the challenges presented by activities and the skills required. She notes key ingredients of meaningful participation as being choice, control over activities, support- ive environment, a sense of challenge, and a sense of mastery. These results indicate that the ability and capacity of individuals with SPMI to undertake work is not as straightforward as may first appear, and as successful as some research may indicate.

A key finding in the study by Bejerholm and Eklund (2004, p. 40) was that the occupational pattern for people with SPMI “was characterised by passivity and a low level of structure and organisation”. They concurred with previous studies which have indicated that competitive employment for people with SPMI is linked with improved quality of life but pointed out that research has also shown that for people with SPMI work is not as enjoyable and important by comparison with other individuals. From this base, Bejerholm and Eklund (2004) rationalised that hence, a more important finding is the relationships

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between daily occupations and quality of life. Likewise, in earlier discussions in this paper, it was also reasoned that if the findings for engagement with daily occupational activities is highly significant, and that it seems that for people with SPMI the engagement with daily occupations is a greater imperative than seeking work in a competitive environment. Upon reflection, when the day-to-day lives of people with SPMI are taken into account, when all the daily activities which others take in their stride but are challenges for people with SPMI are considered, and when the side effects of the medications are allowed for, it seems reasonable to aim for a more achievable goal for people with SPMI. As Eklund and Sandlund (2012) indicated, further research needs to be conducted into the everyday occupational activities of people with SPMI, a recommendation which is supported in this paper. Meanwhile, researchers such as Law (2002) indicate that insights may be gained from considering ‘the person’, an aspect which is discussed in the next section.

The Person

In the literature, ‘The Person’ is defined as “a unique being who assumes a variety of [dynamic] roles simultaneously . . . a composite of mind, body and spiritual qualities . . . including self- concept, personality style, cultural background and personal competencies . .. [and explain that] qualities defining the individual will influence the way in which the person interacts with the environment and carries out his/her occupational performance” (Law et al. 1996, p. 15). Importantly for people with SPMI, individual’s attributes include skills and abilities that are related to general health, cognitive aptitude, motor performance, mental status, and sensory capabilities, all of which impact on occupational performance (Law et al. 1996; Strong et al. 1999). Various studies on work and occupations draw out aspects and attributes of individuals with SPMI (e.g. self-esteem, locus of control, self-mastery, empowerment, educational level, social relationships) and some are noted in the following.

In pursuing research into the work and non-vocational domains for people with SPMI, Mueser et al. (1997) conducted a longitudinal study over 18 months with 143 unemployed patients who had participated in vocational rehabilitation programs. They considered func- tioning in terms of symptoms, substance abuse, hospitalizations, self-esteem and quality of life and found that patients who had continued to work had less severe symptoms, especially in relation to thought disorder and affect, greater self-esteem and better satisfaction in terms of finances and vocational services by comparison with unemployed patients. The study concluded that employment had a positive impact on functioning of various non-vocational domains. Similarly, Van Dongen (1996) found that work enhanced mental health, with participants noting that it distracted them from symptoms. In a sample of 92 people (51 workers and 41 non-workers), Van Dongen (1996) ascertained that workers had significantly higher self-esteem by comparison with non-workers. Using stepwise multiple regressions, Van Dongen determined that 50 % of the variance for self-esteem was explained by: feelings regarding functioning, social relationships, activities with family and valuing work. Eklund and Bäckström’s (2006) study adds further insight into the performance of individuals in the workplace by considering the role of perceived control in empowering individuals with SPMI. Their research was based on data collected from 177 people and focused on perceived control (locus of control and self-mastery) as mediators of health and well-being. In addition, they found that educational level and friends promoted a sense of control and empowerment (Eklund and Bäckström 2006). A further report also noted that perceived control was linked with occupational performance and specifically, activity level and satisfaction with daily occupations (Torrey et al. 2000).

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Further to the above, the issue of ‘recovery’ is a key aspect of the lives of individuals with SPMI. Recovery has been defined as: “the need to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration to live, work, and love in a community in which one makes a significant contribution” (Deegan 1988, p. 12). For individuals with SPMI, recovery, remission and relapse are a recurrent ‘career path’ (Aneshensel 2013). It is noted that, for individuals with SPMI, the ‘pathways’ are not the characteristic “hierarchy of socially desirable accomplishment[s] but rather by states and transitions that typically are unwanted, uncontrollable, and undesirable” (ibid, p. 604). In addition, for people with SPMI, their psychiatric disorders are generally chronic and ‘episodes’ of illness are recurrent and debilitating, making “full and permanent recovery an elusive goal for many persons” (ibid, p. 604). Hence, authors agree that for individuals with SPMI, ‘quality of life’ plays a considerable role in the recovery process and is a vital goal (Aneshensel 2013; Beckers et al. 2012). Bond and Campbell (2008) add that for people with SPMI, the occupational outcomes are dramatically influenced by individuals’ lack of meaning in life, their varying level of symptoms and their ability to develop and maintain relationships. They emphasise that recovery is multifaceted and complex; and suggest that the integration of spirituality into the recovery process can assist in improving symptoms and outcomes. Equally, the reality from the above is that for people with SPMI, undertaking sustained traditional work is not as straightforward as would first appear; the reality is that for these people there are many constraints and barriers.

As noted earlier, a characteristic of individuals with SPMI is stagnation in their approach to occupational activities (Bejerholm and Eklund 2004). In one of the earliest studies on people with SPMI in employment, Lysaker and Bell (1995) reported on changes in the work performance of 68 individuals with schizophrenia or schizoaffective disorder as they participated in a 17 week rehabilitation work placement. They used the 58-item Work Personality Profile to evaluate individuals’ work performance along the five dimensions of the Work Behaviour Inventory (WBI): Personal Presentation, Social Skills, Task Orientation, Work Motivation, and Work Conformance. Lysaker and Bell (1995) found that personal presentation was good and social skills improved but there was no change in the other dimensions. Their findings support the contention that schizophrenia is characterised by “impairment in the ability to work”. They add that the “specific domains of work dysfunc- tion” remain largely unexplored (Lysaker and Bell 1995). Hence, the reality of individuals with SPMI being able to undertake sustained traditional work is challenged and clearly, further research is required in this area.

In a similar study, the WBI was used to evaluate the work functioning of SPMI and reported its usefulness in predicting performance in rehabilitation programs (Bryson et al. 1999). It was later reported that gradualistic approaches to rehabilitation with behavioural interventions had significant positive effects on individuals’ sense of purpose, motivation, and enjoyment in life; and that the behavioural interventions greatly improved individuals’ Personal Presentation, Social Skills and Cooperativeness (i.e. subscales of the WBI) (Bell et al. 2003). A key finding from the study was that on-going support and specific work performance feedback was necessary for positive outcomes and that this ‘intervention’ included job coaching, integrating vocational and mental health services, and brokering accommodations in the workplace. Bell et al. (2003, p. 43) support this approach and point out that: One of the implications of support and job coaching is that workers receive on- going, reliable and valid information about their work performance. This is especially important for persons with mental illness where distortions of reality may be particularly severe and where cognitive impairments may make it more difficult to accurately process social information in the workplace. This insight from Bell et al. (2003) is significant not

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only for rehabilitation programs for transition into the workplace but equally, for everyday existence for people with SPMI if they are to achieve quality of life. It indicates that a considerable level of ongoing support is required but somewhat alarmingly, it highlights the challenges in addressing difficult, confronting and perplexing behaviours which may be exhibited by people with SPMI. It is here rationalised that the comment by Bell et al. (2003) is a fundamental reason why the undertaking of work by people with SPMI is challenging and, in some or most cases, may not be an option; and, that in those cases the notion of ‘occupation’ rather than ‘work’ is what needs to emphasized and be the focus of the efforts of supporters, carers, institutions and policy, i.e. factors in their environment.

The Environment

In their study, Law et al. (1996, pp. 10–16) refer to the environment as “those contexts and situations which occur outside individuals and elicit responses from them . . . [and] includes the cultural, socio-economic, institutional, physical and social considerations”. They add that contexts include where the individuals “live, work and play” and that they are tempered by temporal factors such as time, age, health status. Also, they note that for each of these aspects consideration needs to be taken from the personal, household, neighborhood, or wider community perspectives. Law et al. (1996) draw on the work of others to illustrate how the environment determines the behaviour of people. They detail how a town’s community hall can be used for various activities (e.g. church, political meeting, or parties); and that while the same people may use the hall, the purpose for which the hall is being used can dictate different activities, roles and occupational behaviours for those individuals. Hence, the environmental context can influence individual’s behaviour.

The work of Law et al. (1996) is relevant because it assumes that the person and environment are continuously interacting “across time and space” such that the congruence between the two is either increased or diminished. In an optimal context, the person and environment are compatible and interacting harmoniously. In the case of individuals with SPMI, ideally, the individual fits compatibly with the environment; or, an environment is created or maintained which enables the individual to preserve or improve their engagement with occupational activities, and so, quality of life. Therefore, for people with SPMI, the clinical approach can be enriched or expanded such that the individual is appraised in multiple ways: as an individual, as part of a family, and as a member of the community (Law et al. 1996). This affords consideration of influences from physical, cultural, social, economic, or institutional factors.

Law (2002, p. 640) talks of ‘participation’ (i.e. the sharing of or involvement in an activity) as being important because it enables individuals to connect with their environment, especially others and the community. She points out that participation positively influences health and well-being. Equally, Law (2002) acknowledges that individuals with a disability have a narrower participation range, with activities generally confined to the home, and individuals being involved in “less active recreation” and have “fewer social relationships”. Generally, people with SPMI attend day centres where attention is paid to engaging them with activities that promote their health and well-being. Bejerholm and Eklund (2004) noted that going to the day centres provided a reason for people with SPMI to leave their homes, spending 0.7 to 3.8 h there. Otherwise, individuals spent most of their time at home (from 15 to 24 h), generally alone. There is consensus that people with SPMI predominantly spend time engaging with passive activities (Bejerholm and Eklund 2004; Shimitras et al. 2003; Weeder 1986) . This passive lifestyle seems to be a characteristic of people with SPMI and

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many explanations have been advanced as to why this is so. It is suggested that people with SPMI like to feel in control of the environment around them and hence, opt for the quieter lifestyle within which externally initiated events which may be beyond their control are minimised (Bonder 1997). Environments such as day centres present an ambience of quiet and passivity which matches the preferences of people with SPMI; this makes such environments attractive places for people with SPMI to spend their time, utilise care and “utilise their environment at their own pace, interacting socially according to their own capability and keeping in control” (Bejerholm and Eklund 2004, p. 40; Eklund and Sandlund 2012). In addition, it is suggested that “the staff’s empathetic qualities—being interested and understanding, listening to and respecting patients” are an important part of the social milieu for people with SPMI (Bejerholm and Eklund 2004, p. 40). Unfortunately, participation for people with SPMI is influenced by issues such as cost of programs, lack of information and physical assistance, support and social attitudes.

Beyond this, Leufstadius et al. (2008, p. 33) mention that future research should explore the “strategies” people with SPMI develop “in their daily lives to maintain health”. It makes sense that adopting strategies for dealing with stresses and anxieties to prevent set backs or the onset of episodes is critical for people with SPMI. Carers and case workers can play a key role in developing and implementing such strategies. Equally, community-based activity centres, day centres and similar organisations can be pivotal in implementing such strategies and so, sustaining quality of life for people with SPMI. Organisations such as day centres play an important role in bringing structure and routine into the daily lives of people with SPMI that matches their preference (Eklund and Sandlund 2012), something which should be considered when planning for care and support of people with SPMI. Eklund and Sandlund (2012, p. 596) recommend, “Supported education, adding intellectually stimulating activities, providing home-based support in managing self-care and home duties and assistance in seeking psychi- atric care”. For people with SPMI, these activities can be quite challenging and overwhelming and often lead to misunderstanding and stigma from others. Yet, they can be daily occupational activities which are meaningful for people with SPMI and promote their health and well-being.

In the introduction to their paper, Bejerholm and Eklund (2004) presented a very confronting portrayal of the reality of life for people with SPMI. They noted that people with SPMI, “fail to accomplish age-related developmental occupations in work, self-maintenance, and play. . . [and] have problems with organising the daily occupations, which results in a chaotic way of dealing with time . . . and a disharmony between the future images, plans of action, and emotions . . . often because of a decreased ability to integrate perceptual information “(ibid, p. 28). Bejerholm and Eklund (2004) used a temporal perspective to gain insight into how people with SPMI engage with their everyday activities. They reasoned that a time-use perspective would present a deeper and more realistic understanding on how individuals spent their days. In addition, they sought to determine how the activities were experienced, e.g. if the experiences were satisfying or creating anxiety, and where the activities took place, i.e. the social and geographical environments. Bejerholm and Eklund (2004, p. 29) intended for the results to inform “the planning and care of the severely mentally ill and for assisting them in setting adequate life goals, congruent with their abilities, interests, and their environmental context”. Strong et al. (1999) advocated that the person-environment-occupation interaction affects the quality of individuals’ experiences and Bejerholm and Eklund (2004, p. 41) suggested that a worthwhile strategy would be to orchestrate environments so as to enhance occupational performance for people with SPMI by minimising the gap between individuals’ “adaptive capacity and the environmental demands”. Agreeably, reshaping the environment can help individuals recover and gain quality of life.

Rebeiro (2001, p. 81) found that people with SPMI sought environments which supported individuals’ needs for “being, belonging and becoming”. She notes that the environment plays a

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key role in “the experience of occupational engagement and to ongoing, satisfactory occupational performance” (ibid, p.81). Law et al. (1996) agree that the environment is dynamic and can act as an enabler or constraint upon occupational performance. Rebeiro (2001) explains that occupa- tional performance is the outcome of the interaction between the environment, the person, and the occupation; and parallels it to ‘human performance’, which is described as the congruence between individuals’ competencies and demands and supports present in the environment. While understanding of the relationships between the environment and occupation is growing, authors agree that there is a need to further research the construct of ‘the environment’ and to examine its influence on individuals and their potential to achieve fullest participation and so, improve their quality of life (e.g. Goldberg and Huxley 2012; Hammell 2009; Kielhofner 2002; Law 2002; Rebeiro 2001).

Quality of Life

In the literature, some consideration has been given to the relationship between ‘quality of life’ and ‘meaning of life’ for people with SPMI. Perceived meaning of life is known to be vital for quality of life (Stolovy et al. 2009) and recovery (Anthony 1993; Roberts 2008). It is said to be linked to empowerment (Strack and Schulenberg 2009) and intrinsic value, well-being and quality of life (Wilcock 2006). In a study which explored what brings meaning into the lives of people with SPMI and hence, the factors which are important for their recovery and sustained health and well-being, it was found that there are five contributing factors: social contacts (having contact with others, being part of a social context, feeling accepted), engagement in occupation (having an everyday life that functions well, practising interests), precious memories, experienc- ing health (being in good physical health, having good mental health) and positive feelings (feeling safe, feeling needed) (Eklund et al. 2012). The research team concluded that occupations in a broad sense and everyday routines brought meaning to life. They noted that, “It is often a matter of daily occupations at home that brought content to the informants’ days” (Eklund et al. 2012, p. 100). This was consistent with previous studies where “routines and habits” were important to people with SPMI and furnished meaning in their lives (e.g. Leufstadius et al. 2008). Eklund et al. (2012) reasoned that, “it seemed that the routines and habits that constituted the daily occupations created meaning, to a greater extent than the occupation itself”. Minato and Zemke (2004) noted that routines alleviate stress and anxiety and contribute to satisfaction in life for people with SPMI. This was an interesting observation, especially when they also found that meaning in life was further enhanced if the people with SPMI engaged with activities which interested them. These are recurring themes in the literature and are of use in developing recovery processes and programming occupational activities (e.g. Leufstadius et al. 2008). Some research has indicated that SPMI rate purpose in their lives significantly lower than ‘normal’ individuals, and may result in anxiety, despair and existential frustration (Chaudhary and Sharma 1976). Similarly, other research has shown that people with SPMI experience passiveness, loneliness and scant meaning in their lives (Bejerholm and Eklund 2004; Leufstadius et al. 2008).

In considering, quality of life for people with SPMI, it is reasoned that occupational meaning is related to issues of identity, well-being and social relations (Eklund et al. 2012) and normality, taking care of oneself and maintaining health (Leufstadius et al. 2008). Further to this ‘occupa- tional value’ is acknowledged as an important factor (Eklund et al. 2003). Eklund (2004) explains that occupational value relates to the frequency with which certain values are heightened when engaging with daily occupations and that while this may augment satisfaction with performing those daily occupations; the two are not necessarily related. She adds that quality of life scales will often include satisfaction with daily occupations and therefore, the latter can be considered as part

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of the former. However, the danger with this is that the meaning associated with daily occupations tends to vary with different studies (Eklund 2004). For example, it can relate to work, leisure, domestic tasks, self-care, housing, mental health, physical health and/or sense of security. Nevertheless, Eklund et al. (2001) explored the relationship between quality of life and satisfac- tion with daily occupations. Their regression analysis showed that 64 % of the total amount of variance for quality of life was explained by the proposed model and that 46 % was explained by satisfaction with daily occupations while the remainder of the 64 % was largely explained by mastery and employment status. Eklund (2004) reported that there were statistically significant relationships between satisfaction with daily occupations and the sub-factors of quality of life (general life satisfaction and overall quality of life) and those of occupational value (concrete value, symbolic value, and self-reward value), 36 % shared variance and 4–9 % respectively.

From this foundation, it is suggested that occupation as a phenomenon needs further consideration and elaboration. Eklund (2004, p. 136) suggests that “occupation needs to be framed in several different ways . . . [and] regarded as a phenomenon with many facets, some of which may be complexity, hassling experiences, satisfaction, experienced value, or meaning”. In so doing, its influence on individuals with SPMI and their quality of life can be better understood. For example, this is evident in the study by Eklund et al. (2012) who examined the occupational activity of exercise for people with SPMI. They found that “being in good health or improving one’s health” were meaningful factors for people with SPMI and that “exercising and training” were an important part of that regime (ibid, p. 101). These findings were similar to those of previous studies (e.g. Argentzell et al. 2012; Chaudhary and Sharma 1976; Nagle et al. 2002), indicating that health, exercise and training are fundamental aspects for consideration as occupational activities for people with SPMI. Hence, if quality of life for people with SPMI is to be fully understood, a holistic approach needs to be adopted in future studies.

A Holistic Perspective on Work for People with Spmi

In reviewing the literature, four domains have become apparent: The Person, The Occupation, The Environment, and Quality of Life; and, this paper attests to the research which supports some of the issues within those domains which affect the lives of people with SPMI. The narrative review showed that work is considered to be one of the most important aspects of people’s lives and that it contributes to meaning in their lives and promotes quality of life. As such, it is often advanced as a favourable strategy for recovery and as a goal for people with SPMI. However, this paper has indicated that work as competitive employment is not neces- sarily a viable and realistic option for people with SPMI. The nature and complexities of their illnesses and consequently, their lives means that there needs to be a focus on daily occupational activities, rather than traditional work. For people with SPMI, daily occupational activities which focus around routines are critical for minimising stress and anxiety and advancing health, well-being and satisfaction with life. For example, exercise and training were viewed as key drivers for sustaining good physical and mental health and so, being active, being occupied and doing activities of interest were fundament to quality of life for people with SPMI. Interwoven amongst all of these factors, there is ‘the person’ with aspects such as their identity, self-efficacy, and personality; ‘the environment’ within which they may find assistance and support; and, ‘the quality of life’ which ensues from the integration and interaction of all these domains.

Various authors concurred that there is a mutual relationship between various aspects of the lives of people with SPMI and that these interact to promote meaning in life for them (e.g. Eklund et al. 2012; Minato and Zemke 2004; Nagle et al. 2002). In line with this, this paper has proposed a diagram to capture and integrate a holistic approach on the ‘Aspects of

Employ Respons Rights J (2013) 25:239–255 251

Work for People with SPMI’ (Fig. 2) as a tool to guide further research. Information gained from the literature review in this paper has been used to populate each domain with related issues as they have been noted. From here, it is proposed that these issues be used to inform questions which can be addressed in future investigations and serve as a platform from which can be added further knowledge and understanding as it comes to light.

More specifically, it is anticipated that the diagram will be the basis of future research in which quantitative and qualitative methodological approaches are utilized to ascertain the option of work for people with SPMI. Such a study would seek participation from people with SPMI, their carers, case workers, case managers, attending psychiatrists, employee specialists, and other associated clinical and non-clinical workers from both private and public organisations. In addition, it is possible that this holistic approach to work can be considered for individuals other than those with SPMI, e.g. people with physical disabilities, and the elderly). With the incorporation of aspects taken from Law et al. (1996), the applicability of the four domains can readily be extended to other individuals. This would be of value as it would confer the validity and reliability of not only the elements within the four domains but also, add to understanding of the relationships between them. Further to which, perhaps future studies could be designed to compare those with SPMI who have successfully returned to the workforce with those who have not been so successful, or people with SPMI to those with physical disabilities or the elderly. Such research would enhance the comprehensiveness of a holistic approach. Future studies will also work to advancing understanding of the scale of importance of each aspect of the individual, be they someone with SPMI, physical disability, elderly or other individual. In the first instance, it would be worthwhile to determine the reality of work for people with SPMI.

• Work, employment, daily activities, leisure activities

• Rehabilitation programs, Supported employment, Employer attitudes, Stigma, Volunteer work, Study

• Individual Placement & Support Programs, Non-vocational work

• Valuing work, social interactions, camaraderie, respect,

• Being occupied, Participation, Financial security, Job Satisfaction

• The Illness, Clinical characteristics, Medication, Episodes, Recovery, Mental health, Physical health, Cognition, Educational level

• Ability to work, Self-care, Housework, Sense of control, Stagnation, Social competency, Functioning

• Self-efficacy, Self-esteem, Self-stigma, Self- respect, Empowerment, Identity, Normality, Spirituality, Personality

• Hope, Resilience, Self-mastery

• Family, Friends, Case worker, Doctor, Health- care workers

• Day centres, Hospital • Support, Empathy, Understanding • Learning life skills, Therapy, Cognitive skills &

behaviour • Social, Cultural, Geographic, Institutional

• Wellness • Mental health • Independence • Meaningfulness • Social belonging • Sustained recovery • Sustained way of life • Occupational value • Safety • Security • Life satisfaction • Meaning in life • Stability • Happiness • Well-being

Fig. 2 A holistic approach presenting ‘Aspects of Work for People with SPMI’

252 Employ Respons Rights J (2013) 25:239–255

To date, and as noted in the beginning of this paper, there has been a push for people with SPMI to undertake work as part of their recovery or once they have recovered. As shown in this paper, the emerging literature indicates that the reality of this happening for people with SPMI is markedly reduced because of the various aspects in their lives, and the intensity, implications and interplay of these aspects. A holistic approach as outlined in Fig. 2 provides the basis for investigating the lived reality of people with SPMI and their ability to sustain a working life.

Conclusion

This paper sought to draw on studies from the literature to identify the various elements relating to people with SPMI in the context of work and consider the long-term reality of these individuals engaging with meaningful traditional competitive employment. In so doing, these elements were brought together under four key domains: The Person, The Environment, The Occupation, and Quality of Life. These constituted the basis of a holistic approach representing ‘Aspects of Work for People with SPMI’. It reported that research to date has been informative, adding to the body of knowledge for people with SPMI, particularly in relation to work. In this area, there seems to be a big focus on Individual Placement & Support Programs. These studies have been of value as they have added to understanding of the lives of people with SPMI and to development of strategies for managing individuals’ recovery and wellness. Of note in these studies is the importance of daily occupational activities in the lives of people with SPMI and the positioning of these activities as a better and preferred option to traditional ‘work’. It is imperative that future research examines more fully the realities of day-to-day existence for people with SPMI, bringing in the various elements of the ‘Aspects of Work for People with SPMI’.

There is no denying that the majority of people with SPMI are handicapped by their illness and the degree to which this is so varies with individuals. The literature attests to the challenges imposed by the mental illnesses on individuals, in particular as they try to recover and build their lives and achieve a level of normality. As confronting as this is, it needs to be acknowl- edged that people with SPMI may not be able to engage with competitive employment and possibly, minimal non-competitive work such as rehabilitation programs. There is a need to progress cautiously with such initiatives because it is possible that in pushing the agenda for competitive employment for people with SPMI may be setting them up to fail. In which case, individuals become stressed and anxious and relapse. Nonetheless, there is hope in the results from research which indicate that people with SPMI respond favourably to daily occupational activities, such as those associated with community-based day centres. However, currently much of the nature and complexities of the lives of people with SPMI is only beginning to be adequately understood. Further research is required to extend our understanding and knowledge in this area. This paper has presented a holistic approach which can be utilized in such future work. It is with this knowledge and understanding that strategies and programs can be developed to better meet the needs of people with SPMI and enhance their quality of life.

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