The social inclusion of young people with serious mental illness: A narrative review of the literature and suggested future directions

Abstract

Background:

Social inclusion involves objective participatory (e.g. education/employment) and subjective (e.g. sense of belonging/acceptance) elements across multiple domains. It has been associated with enhanced physical and mental wellbeing yet is a novel construct in the empirical literature (i.e. measures have not been sufficiently developed).

Aims:

Young people with serious mental illness are reported to be socially excluded. It is unclear whether this is reflected in the social inclusion/exclusion literature. The aim of this narrative review is to determine whether such literature permits a comprehensive (i.e. multi-dimensional, objective and subjective) understanding of social inclusion among young people with serious mental illness.

Methods:

Searches to identify studies related to the social inclusion and/or exclusion of young people with serious mental illness were conducted on 16 February 2016, 24 August 2016, 16 February 2017, 24 August 2017 and 16 February 2018 in PsycINFO, MEDLINE, the Cochrane Library, SCOPUS, Open Grey, Web of Science, Google and Google Scholar.

Results:

There is a paucity of research in the explicit social inclusion literature involving young people either with or without serious mental illness as participants. Literatures exist in related independent areas of research (e.g. employment, social networks), but such studies employ heterogeneous methodologies.

Conclusion:

Multi-dimensional measures of social inclusion incorporating objective and subjective indicators must be developed for young people with and without serious mental illness. This will enable the generation of normative and clinical data. Existing evidence for the social exclusion of young people with serious mental illness comes from objective indicators in isolated domains (e.g. unemployment). Subjective indicators continue to be under-researched. The above-described measures must be employed to further understanding of the apparent discrepancies between young people with serious mental illness and those without serious mental illness. This will elucidate the relationships between objective and subjective elements of social inclusion and the relationships between these elements and the psychological distress that young people with serious mental illness often experience. This has implications for intervention.

Keywords

Social inclusion early intervention youth young people mental illness psychosis

Background

Social inclusion is an emergent construct in the empirical literature, yet elements of social inclusion (e.g. social and community connections) have long been associated with positive health outcomes (Berkman and Syme, 1979). Although it is frequently assumed to be a self-evident concept (i.e. is often not explicitly defined), a number of domains are commonly thought to underlie social inclusion. These include employment/education, social networks, housing, neighbourhood accessibility and amenities, finances, health/wellbeing and leisure activities (Filia et al., 2018). Despite increasing recognition of its importance, there is no consensus definition of social inclusion (Brown et al., 2015). Such conceptual issues (e.g. definitional controversies, overlap with other constructs) have been discussed elsewhere (Cordier et al., 2017) and are beyond the scope of this review. One may argue that until such consensus exists, empirical examination of the construct is of limited value. There are a number of well-established constructs that lack a consensus definition yet remain widely used. A consistent definition of quality of life (QoL) has not been established, yet it is used across a range of practical and policy contexts, including by the World Health Organization who have developed their own quantitative measure (The WHOQoL Group, 1995). Social inclusion is distinct from such related constructs, and reluctance to translate it into practice and policy impedes the ability to improve outcomes for those who are socially excluded (Brown et al., 2015).

There is some agreement that social inclusion involves objective participation in social activities, interconnected with subjective experiences of belonging and acceptance (Morgan et al., 2007). However, the nature of the interconnections is unclear – does subjective inclusion necessarily increase in the same direction or at the same rate as objective participation for all individuals? (Australian Mental Health Outcomes Classification Network, 2016). The terms social inclusion and social exclusion are intimately related; it is difficult to discuss one without the other. In this review, we follow the examples of other researchers (e.g. Hayes et al., 2008; Ryan and Sartbayeva, 2011), who have switched between the two terms and conceived them as opposite ends of the same continuum. Here, social inclusion will be defined as the experience of belonging/acceptance and satisfaction in relation to opportunities to participate in valued social roles across the above-mentioned domains (Gardner et al., 2017). Social exclusion will be defined as the experience of loneliness/isolation and dissatisfaction in relation to the involuntary absence of such opportunities. It is important to acknowledge that an individual may voluntarily eschew opportunities to participate in some social roles: a lack of objective social participation does not necessarily indicate social exclusion. It is also important to distinguish between active and passive processes of inclusion and/or exclusion. The likely detrimental effects and neural correlates of ostracism (i.e. active social exclusion) have been experimentally demonstrated (Eisenberger, 2012), but less is known about the effects of more passive forms of exclusion such as ignoring. It is possible that passive inclusion and passive exclusion each have harmful effects on health and wellbeing.

Gender differences are apparent in some domains of social inclusion. The median earnings of full-time employed men are 14% higher than those of full-time employed women in developed countries (OECD, 2018). Evidence is more tentative regarding differences on subjective indicators. It has been reported that, compared to males, females have more emotionally intimate social connections, solicit more social support in times of stress and more frequently provide social support to others (Kawachi and Berkman, 2001). Na and Hample (2016) found that binary gender (male/female) significantly predicted sense of belonging, but did not report the direction of the effect and so it is unclear whether males or females experienced a greater sense of belonging. The social inclusion of gender fluid and diverse (i.e. non-binary) individuals is increasingly recognised as an important and under-explored area of research (Divan et al., 2016). Given evolving conceptualisations of gender and the relative novelty of social inclusion as a unified empirical construct, more research is needed in this area.

Social inclusion is thought to become salient in adolescence, which is a biopsychosocial process through which young people develop the skills to successfully transition to adulthood (Morrison et al., 2012). If social inclusion is not fostered through this sensitive period, it can be difficult to attain in later life (Social Exclusion Unit, 2005). Some have stated that adolescence occurs between 10 and 19 years of age (World Health Organization, 2017), although it may be defined as the phase between puberty onset and the attainment of adult independence (Blakemore and Mills, 2014). In this review, the terms ‘adolescence’, ‘youth’ and ‘young people’ will each refers to this phase and may be used interchangeably. ‘Young adult’ is a related term that will be applied to people who meet legal requirements of adulthood (i.e. ⩾18 years old) but may have not yet completed the above-described phase of adolescence. Significant literatures exist within some domains of social inclusion for young people (see Mawn et al., 2017, for a systematic review and meta-analysis of youth unemployment). Empirical research on a more comprehensive conceptualisation of the construct (i.e. multi-dimensional, incorporating objective and subjective indicators) is lacking in this population. This is due, in part, to a lack of psychometrically sound measures of social inclusion (Baumgartner and Burns, 2014; Coombs et al., 2013; Cordier et al., 2017).

Young people with serious mental illness (SMI) are thought to be especially vulnerable to social exclusion (Social Exclusion Unit, 2005), and this may be the case regardless of specific diagnostic group (Caruana et al., 2017). The term SMI is somewhat interchangeable with the term psychiatric disability and may be defined as a mental illness that makes it difficult for an individual to complete everyday activities without assistance (ABS, 2015). There are inconsistencies in the literature regarding which mental disorders may be classified as SMI. Many definitions include non-organic psychotic disorders and only those affective disorders that severely impact function, such as bipolar I disorder and major depressive disorder (Ruggeri et al., 2000). In practice, SMI usually refers to psychotic illness (McGorry et al., 2006), although it may refer to any mental illness requiring intensive recurrent treatment and/or hospitalisation (Carlat, 2005).

SMI typically emerges during adolescence and young adulthood; up to two-thirds of affected people experience their first episode of psychosis before 25 years of age (Morgan et al., 2012). Suicide is the leading cause of death for Australians in this stage of life (ABS, 2017). The Interpersonal Theory of Suicide (Van Orden et al., 2012) posits subjective social exclusion (i.e. thwarted belongingness) as a key determinant of adolescent suicidal behaviour. This notion has received empirical support: there is meta-analytic evidence that peer victimisation is a risk factor for adolescent suicidal ideation and attempts (Van Geel et al., 2014). For young people with SMI, many of whom feel stigmatised by social reactions to illness onset, the relationship between exclusion and suicide may be even stronger (Tarrier et al., 2007). Suicide rates are 7–10 times higher for people with SMI than those from the general population (Tanney, 2000), and meta-analytic evidence suggests that completed suicides usually occur near illness onset (Tarrier et al., 2007). Fortunately, there is evidence that social inclusion may protect against suicide risk in this cohort (Masten and Powell, 2003).

Compared to the emergent social inclusion literature, youth suicide and mental illness–related stigma are relatively well-established areas of research. There is a large body of work devoted to understanding stigma processes, whereas most publications referring to social inclusion do not formally define the construct (Evans-Lacko et al., 2014). The apparent relationships between suicide, social exclusion and stigma among young people with SMI are likely complex and demand further attention. However, this very important area of research is beyond the scope of the present review, which aims to further understanding of social inclusion/exclusion as a preliminary step in that direction.

The social exclusion of young people with SMI is also costly in economic terms. Many young people with SMI begin receiving government payments following illness onset and continue to do so for the rest of their life (Killackey et al., 2013). The cost of psychotic illness alone to society and government has been estimated at AUD$4.91 billion and AUD$3.52 billion per annum, respectively (Neil et al., 2014). Despite these personal and societal costs, social inclusion has not been rigorously examined in this population due to the previously mentioned focus on isolated domains (e.g. un/employment) and lack of tools that have been explicitly developed to measure social inclusion.

Public health policy has increasingly been concerned with social inclusion. Improving social connection has recently been advanced as a public health priority in the United States (Holt-Lunstad et al., 2017). Increasing the social inclusion of young people with SMI in particular is a key indicator of Australia’s Fourth National Mental Health Plan (Department of Health, 2009). Yet the social exclusion of this cohort does not appear to be decreasing, despite evidence for improved access to services (Morgan et al., 2012). In order for policies to successfully target social inclusion, they must be able to effectively identify individuals or groups who are socially excluded and thoroughly assess the dimensions of exclusion (Hayes et al., 2008). Such identification and assessment are not presently feasible for young people with or without SMI, for reasons already stated. Further research seeking to measure and examine the barriers and facilitators to social inclusion for young people, particularly those with SMI, is therefore warranted in order to better inform policies and interventions (Stain et al., 2012).

Overview

In this paper, we conduct a narrative review of the literature on social inclusion among young people with SMI. The review is organised into two sections: (1) an outline of evidence of the potential benefits of social inclusion, and the importance of measuring social inclusion for young people, particularly those with SMI and (2) a review of evidence for the reported social exclusion of young people with SMI relative to those without SMI, and the introduction of a useful theoretical framework for interpreting such group differences.

Literature search strategy

Searches were conducted on 16 February 2016, 24 August 2016, 16 February 2017, 24 August 2017 and 16 February 2018 in PsycINFO, MEDLINE, the Cochrane Library, SCOPUS, Open Grey and Web of Science. Searches were also conducted in Google Scholar and the general Google search engine. Initially, searches were conducted separately within three areas: social inclusion, SMI and adolescence. Search terms used for the literature relating to social inclusion are as follows: ‘social* inclu*’ OR ‘social* exclu*’. Search terms used for the literature relating to SMI are as follows: ‘mental health’ OR ‘mental* ill*’ OR ‘severe mental illness’ OR ‘serious mental illness’ OR ‘disorder’ OR ‘psychot*’ OR ‘psychosis’ OR ‘psychoses’ OR ‘schizo*’ OR ‘bipolar’. Search terms used for the literature relating to young people are as follows: ‘youth’ OR ‘adolescen*’ OR ‘young people’ OR ‘young adult’ OR ‘young person’ OR ‘first-episode’ OR ‘early intervention’ OR ‘at risk OR ‘at-risk’ OR ‘high risk’ OR ‘ultra high risk’ OR ‘ultra-high risk’ OR ‘ultrahigh risk’. Results from the three independent searches were then combined (e.g. ‘social* inclu*’ OR ‘social* exclu*’ AND ‘mental* ill*’ OR ‘mental health’ AND ‘youth’ OR ‘adolescen*’).

Article titles and abstracts were scanned to determine relevance. Given the small number of citations using the terms social inclusion/exclusion in the youth SMI literature, any article that discussed social inclusion in relation to people of any age group with SMI was deemed relevant. Snowballing techniques were also applied by perusing the reference lists of relevant articles to locate further articles of relevance.

Getting the measure of social inclusion

Why measure it? Relationships to mental and physical health

Social inclusion (i.e. a combination of objective participation and subjective belonging/acceptance) is likely to have a protective relationship with mental health (Davies et al., 2008). Structural (e.g. objective social integration) and perceived (e.g. satisfaction with social support) inclusion may help buffer against psychological distress through the availability of opportunities for meaningful social engagement and emotional support (Kawachi and Berkman, 2001). However, a bi-directional relationship is possible: mental health may also influence social inclusion. A large study recently published in the Australian and New Zealand Journal of Psychiatry (N = 21,227 adults randomly selected from the New Zealand electoral roll) found that psychological distress and subjective feelings of social acceptance predicted each other longitudinally (Saeri et al., 2018). The authors found that feelings of acceptance were a stronger and more consistent predictor of decreased psychological distress over time than decreased psychological distress was of feelings of acceptance. This suggests that increased subjective social inclusion contributes to decreased psychological distress, although causality cannot be inferred from this finding. Replications in controlled observational longitudinal studies are required. The finding highlights the need for further research incorporating objective and subjective indicators of social inclusion and examining their relationships to psychological distress.

Social inclusion also appears to have a protective relationship with physical health: meta-analytic evidence suggests that internationally and across sexes, an increase in objective (e.g. participation in social activities, living with others) and subjective (e.g. feelings of belonging) social inclusion is associated with reduced mortality risk (Holt-Lunstad et al., 2017). Conversely, objective and subjective indicators of social exclusion (e.g. infrequent contact with friends/family, perceived isolation) are related to deteriorated physical health (Cacioppo et al., 2015). Despite these apparent benefits, empirical research seeking to explicitly examine social inclusion at the individual and group level has not emerged until the past 10–15 years (Morgan et al., 2007). Such research has typically focused on marginalised adult populations such as those with chronic schizophrenia (e.g. Killaspy et al., 2014). A developmental perspective on social inclusion has not been well established in this literature.

Considering the developmental perspective on social inclusion

Social inclusion and exclusion are dynamic processes across the lifespan (Morgan et al., 2007); the experience of social inclusion at age 18 is likely to be objectively and subjectively different to that at age 50. Adolescence is a sensitive period for both functional and emotional aspects of social development, as young people transition to adult roles (Killackey et al., 2013). Many of the processes involved in this normative transition require the navigation of increasingly complex interpersonal relationships in an evolving social environment (Blakemore and Mills, 2014). There is evidence for an increased sensitivity to peer inclusion and exclusion in adolescence (Blakemore and Mills, 2014; Vanhalst et al., 2015); social cognition, which involves information processing about the self and others in social contexts, develops significantly during this developmental phase (Kilford et al., 2016). Forming a sense of identity, which involves simultaneously cultivating autonomy and connectedness, is another developmental task of adolescence (Pfeifer and Berkman, 2018). There is evidence that the more developed a young person’s self-identity is, the stronger their sense of community connection is likely to be (Cicognani et al., 2014). Understanding social inclusion and related processes during transitional phases such as adolescence is therefore important and more research is needed in this respect (Hayes et al., 2008).

Adolescence is also the developmental phase during which the onset of most forms of mental illness usually occurs (McGorry et al., 2013). Young people with SMI sometimes have social cognitive deficits that may make it difficult for them to successfully negotiate interactions with peers (Healey et al., 2016), although there is tentative evidence that such deficits may not necessarily relate to social inclusion (Gardner et al., 2017). Young people sometimes have intolerant attitudes regarding mental health issues and may even target those with SMI for maltreatment (Sholl et al., 2010). The onset of SMI is often marked by peer harassment, loss of friendships, isolation and loneliness (O’Driscoll et al., 2015). Young people who have developed SMI may be particularly vulnerable to social exclusion (Lau et al., 2010). For these young people, there is an absence of long-term illness effects and secondary processes (e.g. medication side-effects, recurrent hospitalisation, entrenched marginalisation) that may impact social inclusion in chronic populations. Research in the early phase of illness may therefore afford a clearer understanding of the processes of inclusion and exclusion in SMI by minimising confounds related to illness chronicity (Sullivan et al., 2013). As such, it may facilitate more valid measurement.

The current status of measurement development

Explicit and direct measures of social inclusion ought to contain objective and subjective indicators (Shepherd and Parsonage, 2011). Objective indicators measure observable elements of the social environments within which people live, and subjective indicators measure the ways people evaluate and perceive their living conditions within such environments (Lee and Marans, 1980). However, the majority of research on social inclusion has been conceptual and has not incorporated objective and subjective indicators, which has hampered measurement progress (Good Gingrich and Lightman, 2015). Work towards the creation of reliable and valid measures of social inclusion began relatively recently (e.g. Huxley et al., 2012), with few studies directly measuring the construct (Baumgartner and Burns, 2014). There is currently no ‘gold standard’ measure of social inclusion (Wilson and Secker, 2015), and two preliminary reviews concluded that no measure has been adequately developed or tested (Baumgartner and Burns, 2014; Coombs et al., 2013). This conclusion was also reached by the authors of a recent systematic review evaluating the psychometric properties of social inclusion measures (Cordier et al., 2017). It is important to note that there are measurement tools outside of the social inclusion literature that may partially capture relevant themes. For example, the Interpersonal Needs Questionnaire (Van Orden et al., 2012) assesses risk factors for suicide such as thwarted belongingness. However, it also assesses suicide risk factors that are not necessarily related to inclusion (e.g. ‘the people in my life would be happier without me’). Given the present paper aimed to review the explicit social inclusion/exclusion literature, such overlapping measures from distinct literatures were not captured by the search terms used.

There are no measures of social inclusion specific to young people, either with or without SMI. Hence, researchers have not had the optimal tools with which to explicitly examine social inclusion in these populations. A comprehensive (i.e. objective, subjective, and multi-dimensional) account of the degree of social inclusion among young people from the general community has yet to be well established. Consequently, gross discrepancies in social inclusion between young people with SMI and those in the general community are often assumed while there is a lack of clarity regarding granular similarities and differences.

Future directions in measurement development

Measures of social inclusion must be developed among young people both with and without SMI, but some thought must be given as to how this may best be achieved. Nomothetic approaches emphasise generalizability, whereas idiographic approaches emphasise individuality: combining these approaches may be optimal in clinical and research settings (Hayes and Hoffman, 2018). Measures can be administered through observation and/or employed via self-report. Given the centrality of subjective experience to social inclusion, self-report measures incorporating objective and subjective indicators are appropriate (Coombs et al., 2016). Such indicators should measure levels of connectedness and participation (Cordier et al., 2017) across previously mentioned domains of social inclusion. For young people, items related to vocational achievement and peer networks will be especially important (Van Schalkwyk et al., 2015; Vanhalst et al., 2015). Measures that produce summary scale scores can help simplify assessment in clinical practice, and data analysis in research settings. However, mixed-measurement approaches (i.e. a combination of nominal, ordinal, interval and ratio variables) may more meaningfully facilitate a combined nomothetic-idiographic approach. As such, they would better capture the complexity of social inclusion in both clinical and research contexts. Item-level analysis of mixed-measurement indicators can help clinical services target-specific areas of social inclusion that their clients may want help with (Australian Mental Health Outcomes Classification Network, 2016). Researchers ought not to assume that complex constructs such as social inclusion are homogeneous (Portney and Watkins, 2009). Mixed-measurement tools may allow researchers to better examine the heterogeneity and multi-dimensionality of social inclusion, thus maximising the ecological validity of findings.

In the United Kingdom, the Social and Community Opportunities Profile (SCOPE; Huxley et al., 2012) is a relatively established mixed-measurement tool for assessing the social inclusion of adults. Psychometric development of the SCOPE included a principal components analysis for data reduction/dimension identification, and examination of internal consistency, test–retest reliability and validity. Measures of social inclusion for young people with and without SMI will benefit from similar psychometric development. It will be important for the design, planning, and implementation of such research to occur in consultation with a variety of young people.

Understanding social inclusion for young people with SMI

What is the evidence?

Young people with SMI are often described as at risk of social exclusion (Lau et al., 2010) and among the least included groups in society (Social Exclusion Unit, 2005). Yet the consensus in the social inclusion literature is that, of the few existing measures, some have shown promise but none have undergone sufficient psychometric assessment (Baumgartner and Burns, 2014; Coombs et al., 2013; Cordier et al., 2017). If empirical research has been impeded by such issues, it is necessary to consider the evidence on which reports of social exclusion in this population are based (i.e. if explicit measures of social inclusion have not been feasible, which proxy measures have been used?). Furthermore, a review of research on social exclusion in mental illness reported that 1% of N = 97 studies incorporated participants who were young people (Evans-Lacko et al., 2014). If the assertion that young people with SMI are socially excluded does not come from an evidence-base in the social inclusion literature, which literature(s) does it come from? Much of the evidence suggesting the social exclusion of young people with SMI comes from research on objective indicators in independent domains in the first-episode psychosis literature.

Employment and education

Employment is perhaps the single strongest contributor to social inclusion in SMI (Evans and Repper, 2000). This is especially pertinent to young people with SMI, for whom education is linked to employment and may be equally important (Caruana et al., 2017). Unemployment rates for young people with SMI have been estimated at 40–50%, compared to rates as low as 3.5–4.5% in healthy same-aged peers, and the estimate rises to between 70% and 90% unemployment for those who develop chronic SMI (Killackey et al., 2013). Young people with SMI also appear to have poor outcomes in educational settings, which are the foundation for future employment opportunities and higher wages (ABS, 2015). There is evidence that as few as one-quarter of young people with SMI complete high school compared to an 84% completion rate among their healthy same-aged peers (Killackey et al., 2013). In addition, young people with SMI are chronically excluded in educational settings as measured by number of friends and frequency of exposure to peer harassment (O’Driscoll et al., 2015).

Social networks

Social networks, including both formal and informal supports, are an integral component of social inclusion for young people with SMI: social support positively predicts functional outcomes in this population (Jaracz et al., 2007). Formal supports may be defined as those individuals and/or services that provide support in a professional capacity (e.g. GPs, social workers). Many young people with SMI struggle to maintain engagement with formal supports (Gulliver et al., 2010). This may occur for a variety of reasons, such as unsatisfactory previous experiences with services, or concerns about being misunderstood by treatment professionals (Van Schalkwyk et al., 2015). Informal supports may be defined as those individuals and/or groups who provide personal and emotional support within the social network (e.g. friends/family). The authors of a systematic review concluded that there was evidence for reduced social networks and support in early psychosis, but that a greater number of comparable studies are needed due to the heterogeneity of methodologies to date (Gayer-Anderson and Morgan, 2013).

Housing and neighbourhood amenities

Safe housing in accessible, well-serviced neighbourhoods is an important factor in the social inclusion of young people. It has been estimated that up to 42% of the homeless Australian population are young people (Flatau et al., 2015). It is also estimated that between 50% and 75% of homeless Australian youth have experienced a mental illness (Costello et al., 2013) and that 14% have SMI (Flatau et al., 2015). This compares to an estimated SMI prevalence rate of approximately 1% in the general youth population (Kamieniecki, 2001). As such, lack of adequate housing is a major factor relating to the social exclusion of young people with SMI (Bradshaw et al., 2007).

Living in disadvantaged neighbourhoods with limited amenities and services (e.g. lack of public transport, no library) is associated with a range of poor physical and mental health outcomes, as well as reduced employment and education prospects for young people (Hayes et al., 2008). Young people with SMI tend to experience more of these disadvantaged living arrangements than their healthy same-aged peers (Morgan et al., 2008). There is evidence that young people with SMI spend less time participating in leisure or social activities in their local community than their unemployed peers who do not have a history of mental illness (Hayes and Halford, 1996).

Finances

Access to financial resources makes an obvious and considerable contribution towards an individual’s social inclusion. Young people with SMI experience significant financial problems, partly due to unemployment, but also due to constricted social networks which limit access to potential sources of financial aid (Singer et al., 2014). Data suggest that during the 2010/2011 financial year, Australians aged 15–34 years earned an average annual wage/salary of $40,055 compared to the national average of $51,923 (ABS, 2015). A 2009 financial survey of 371 Australians living with SMI revealed that 38% of respondents had an annual income less than $20,000 and that 53% of respondents regularly went into debt (e.g. relied on credit cards) in order to make ends meet (SANE, 2009). A similar survey of 559 Australians with SMI suggested that 75% of respondents received government payments (SANE, 2010). Given that up to 60% of people with SMI apply for low-income disability support pensions within 5 years of illness onset, it is important to address financial issues as early as possible in SMI to promote social inclusion (Krupa et al., 2012).

Physical health

Good physical health contributes to social inclusion by enabling people to be mobile and active enough to participate in valued social activities. Unfortunately, people who suffer from SMI, including those with a recent illness onset, have experienced poorer physical health than the general population (Gates et al., 2015). For example, it has been estimated that the life expectancy of an individual with schizophrenia is reduced by 15 years compared to the general population (Hjorthøj et al., 2017). Much of the increased mortality risk in chronic SMI may be attributed to physical health issues such as cardiovascular disease and sedentary lifestyle (McNamee et al., 2013). Physical health has been posited as an especially important element of social inclusion for young people, particularly those with SMI whose already complicated transition to adulthood may be made more difficult by physical ill-health (Social Exclusion Unit, 2005). Srihari et al. (2013) found a significant increase in cardiovascular risk factors (i.e. nicotine consumption and markers of obesity) among young people with SMI over 12 months after service entry. They also found that such young people were indistinguishable from controls regarding these same cardiovascular risk factors upon service entry. Furthermore, there is meta-analytic evidence that young people with SMI (especially those on antipsychotic medication) are at increased risk of metabolic syndrome relative to the general population (Vancampfort et al., 2015).

Multi-dimensional complexity and challenges

The above sections briefly reviewed diverse sets of evidence for the social exclusion of young people with SMI in distinct domains. It is highly likely that there are complex interrelationships across domains, and it is important to reflect on some of the challenges that this complexity poses. For example, there is robust evidence that youths who are not in employment, education or training (NEET) have negative economic outcomes (Mawn et al., 2017). Superficially, this may be interpreted as higher levels of employment/education contributing to higher income. However, there is evidence that intergenerational socioeconomic factors (e.g. familial history of dependence on income support) are strongly related to NEET for young people with SMI (Ryan and Sartbayeva, 2011). This suggests that distal social network and financial factors contribute to proximal employment/education status for young people with SMI, complicating interpretations of the direction of effects. This highlights the difficulty of modelling cross-sectional paths between domains of social inclusion in this population. Longitudinal research designs that can adequately model reciprocal relationships and directional influences between domains of social inclusion over time may help address these challenges. Indeed, an article recently published in this journal used cross-lagged panel analysis to examine bi-directional relationships between social connectedness and mental health across time (Saeri et al., 2018). Future research will also need to disentangle any effect that individual differences in, e.g., belongingness needs may have. Such needs are likely to be stronger in some young people than in others (Verhagen et al., 2018). Understanding this variation could help explain, e.g., differential responding to objectively equivalent improvements in un/employment status among young people with SMI.

The importance of multi-dimensional measurement

Objective indicators of inclusion are among the social determinants of wellbeing, and young people with SMI appear to have poor outcomes in this respect. Relative to their peers from the general community, young people with SMI have less employment/education, reduced social support, more housing problems while living in less advantaged neighbourhoods, with access to fewer leisure activities, fewer financial resources and poorer physical health. However, these findings come from studies that primarily examine first-episode psychosis and are situated within largely independent literatures. As noted above, this is problematic because many proposed domains of social inclusion are theoretically interrelated, and these interrelationships may come to bear on group differences. In a study of physical health and lifestyle factors among young people with SMI, Samele et al. (2007) found that differences between this clinical population and healthy controls were accounted for by unemployment status in the clinical group. Of the few studies examining social inclusion among young people with SMI, many are not comparable due to heterogeneity of methodologies, even within individual domains (Gayer-Anderson and Morgan, 2013). This makes it difficult to examine the potential interrelationships among domains, and how these may impact group differences. It will be helpful for future research seeking to understand discrepancies in social inclusion between young people with and without SMI to employ well-developed, explicit, multi-dimensional measures of the construct. This would add simplicity and consistency to pre- and post-testing of social inclusion, which has clinical and research applications (e.g. at service entry and discharge, or before and after interventions). It would also be helpful for such research to consider other forms of SMI in addition to psychosis.

Despite the need for a more integrated and consistent approach to measuring social inclusion, it seems clear that young people with SMI ought to be offered interventions to improve objective inclusion across the above-mentioned domains. Indeed, interventions such as Individual Placement and Support (IPS) for education/employment are well-established and efficacious (Mueser et al., 2016). However, it is the opportunity to participate in those particular social roles that are valued by the individual that characterises social inclusion (Huxley et al., 2012). The above findings do not necessarily provide information regarding subjective experiences of belonging/acceptance, nor which forms of social participation are individually valued. Subjective indicators are valid measures of outcome in SMI and ought to be used alongside objective indicators (Lloyd et al., 2010). This will help determine which social roles are meaningful to young people with SMI, in which domains of social inclusion they may like to increase participation, and whether subjective (e.g. psychological) interventions are indicated to help improve social inclusion.

How do young people with SMI subjectively experience social inclusion/exclusion?

There are two broad aspects to the subjective experience of social inclusion: feelings of belonging/acceptance and subjective satisfaction with opportunities to participate in valued social roles (Gardner et al., 2017). Subjective indicators of social inclusion are under-researched among young people with SMI (Sündermann et al., 2014). A recent systematic review of loneliness in psychosis found just 10 studies that were suitable for inclusion and concluded that loneliness in psychosis remains poorly understood (Lim et al., 2018). There is some qualitative evidence that young people with SMI value a sense of belonging (Perry et al., 2007), although this need appears to be unmet. Tarrier et al. (2007) found that 77% of participants with first-episode psychosis felt they had suffered loss or disruption to their social life and 50% felt socially excluded due to illness onset. There is some cross-sectional evidence that young people at ultra-high risk for psychosis experience lower perceived social support and higher levels of loneliness than healthy controls (Robustelli et al., 2017). It is unclear whether these variables predicted a longitudinal transition to first-episode psychosis. Nonetheless, such findings suggest that subjective social exclusion is worthy of exploration as a potential aetiological factor in the emergence of SMI. Given that many young people with SMI appear to experience low levels of belonging/acceptance and high levels of loneliness, emerging interventions (e.g. smart phone applications) are seeking to target these areas (Lim et al., 2016).

The subjective value that one assigns to particular social roles is a personal and individualised matter, but some common themes emerge when young people with SMI are asked about their treatment goals and preferences. Ramsay et al. (2011) surveyed 100 young people in the United States who had been hospitalised for first-episode psychosis and asked them about their life and treatment goals. The most frequently stated goals involved employment, education, relationships, housing, health and transportation, with vocational and educational services being the most desired service type. Similarly, Iyer et al. (2011) asked 68 young people with first-episode psychosis in India to identify three treatment goals and rank them according to importance. Employment, family and interpersonal relationships, and education were identified as the top 3 priorities, in that order. In Australia, Cotton et al. (2011) explored the reasons why young people with SMI were referred to group interventions, and the young peoples’ goals in attending such interventions. They found considerable overlap between referral reasons and client goals, both of which primarily centred on improving interpersonal relationships and vocational issues.

The treatment goals of young people with SMI appear to map onto a number of proposed social inclusion domains (e.g. employment/education, social networks, housing, health). This suggests that such young people value social roles in these domains and may be dissatisfied with existing levels of engagement (i.e. that there is a discrepancy between subjectively desired and objectively available opportunities to participate). At present, such propositions remain speculative and require further examination with explicit measures of social inclusion that adequately integrate objective and subjective indicators.

The relationship between objective and subjective indicators of social inclusion

Increased objective participation seems to contribute to greater subjective sense of inclusion in the general population (Na and Hample, 2016), including young people (Newman et al., 2007). Objective participation and subjective sense of inclusion may not share an identical relationship in SMI populations to that encountered in the general community, though (Australian Mental Health Outcomes Classification Network, 2016). There is some evidence that increased objective community integration is positively related to subjective sense of recovery in SMI (Lloyd et al., 2010). However, Lloyd and colleagues used a measure of community integration that seems to capture more subjective than objective elements of social inclusion (e.g. ‘I feel like part of this community’). Also, the most common diagnosis among their middle-aged sample (age in years M = 41, standard deviation [SD] = 12.8) was schizophrenia, suggesting that participants suffered long-term illness and might experience entrenched exclusion. Empirical data are lacking regarding the relationship between objective and subjective indicators of social inclusion for young people with SMI. In the next section, we offer a theoretical account which may permit the generation and testing of hypotheses about the relationship between objective and subjective indicators of social inclusion in this population.

Perceptions of social rank/status after illness onset

While there are no theories that have been specifically developed to explain social inclusion (Baumgartner and Burns, 2014), evolutionary accounts are applicable. Baumeister and Leary (1995) proposed that humans have an innate need to belong, requiring regular objective social contact that promotes a subjective sense of connection. The integration of these objective and subjective elements is theorised to have greater evolutionary value than either element on its own. The need to belong has received significant empirical support over the past 20 years (Verhagen et al., 2018). Social Rank Theory, an evolutionary account seeking to explain aspects of the need to belong, has been advanced specifically as a framework for understanding the psychosocial changes that occur for affected young people after SMI onset. Thoughts, emotions and behaviour are postulated to be affected by an individual’s subjective perception of their social rank or status within the group (Birchwood et al., 2005). This seems particularly applicable to adolescence and early adulthood, where social comparison (i.e. ‘ranking’ oneself compared to peers) proliferates (Vanhalst et al., 2015). Indeed, developmental researchers often ask adolescent participants to explicitly rank the popularity of individuals in their peer group as a measure of social status (e.g. Loflin and Barry, 2016).

The impact of SMI onset may be significantly influenced by illness appraisals, especially those related to interpersonal (e.g. social networks) and achievement (e.g. employment/education) domains (Birchwood et al., 2005). We have reviewed evidence for the objective social exclusion of young people with SMI relative to those without SMI from various domain-specific literatures (e.g. reduced social network size, unemployment, inadequate housing, poor physical health, financial difficulties). Social Rank Theory suggests that these objective markers of exclusion are likely to be salient and strongly linked to a subjective perception of decreased social rank/status (i.e. inclusion) for young people with SMI. It is plausible that this link between objective and subjective markers is important yet weaker for young people from the general community, whose social functioning is likely intact and perhaps taken for granted. That is, there may be satiation effects (Baumeister and Leary, 1995) whereby those with sufficient objective connections are less likely to continue seeking such connections as a means of increasing their sense of belonging/acceptance. This has implications for intervention: increasing opportunities for participation may contribute to a disproportionate increase in subjective inclusion for young people with SMI relative to those from the general community.

Here, it is relevant to acknowledge that community perceptions of, and responses to, people with SMI are integral. Some have argued for a greater emphasis on ‘mutual recovery’, whereby the responsibility for increasing social inclusion shifts from the individual with SMI to a shared cross-community approach (Saavedra et al., 2018). This is an important related area of research, but is outside the scope of the present review.

Social rank/status, social exclusion and psychological distress

The onset of SMI may often be associated with shame, loss and hopelessness, in relation to a perceived decrease in social rank/status (Birchwood et al., 2005). Depression and anxiety are highly prevalent among young people after SMI onset (Cotton et al., 2012), and there is some evidence that a subjective sense of exclusion may contribute to such psychopathology. For example, Iqbal et al. (2000) found that approximately 50% of people diagnosed with first-episode psychosis subsequently experienced symptoms of depression. They also found that perceived loss of social role and status was related yet antecedent to the depressive symptoms, which were not an epiphenomenon of psychotic symptomatology. Using Social Rank Theory as a framework, Birchwood et al. (2005) have stated that subjective appraisals of SMI onset are the primary factor contributing to whether or not affected young people develop depression and/or anxiety. This suggests that subjective perceptions of exclusion may have a stronger relationship to psychological distress than do objective indicators of exclusion for young people with SMI. We have found tentative support for this hypothesis in our own work. In a cross-sectional exploration of social factors and psychopathology in first-episode psychosis, we found that subjective measures of social inclusion (e.g. I felt accepted by my neighbours) were more strongly related to symptoms of depression than was a measure of objective social functioning (Gardner et al., 2017). This finding was correlational and causality cannot be inferred. However, it is consistent with the notion that interventions aimed solely at increasing social networks for young people with SMI, rather than changing subjective perceptions of social support, may not be accurately weighting treatment targets (Sündermann et al., 2014). Lim et al. (2018) have suggested that addressing cognitions about social interactions (e.g. perceived exclusion) may alleviate psychological distress for young people with SMI. They also note that this should occur within appropriate social environments, highlighting the interconnections between subjective and objective elements of social inclusion. This points to the need for further research examining the relative strength of relationships between subjective and objective indicators of social inclusion and psychological distress for young people with SMI.

Conclusion and future directions

Adolescence is the crucible of social inclusion; a transitional stage where young people forge their sense of identity, and start to develop the social roles they hope to inhabit in adulthood. It is a period of unprecedented biopsychosocial change that demands significant adaptation for any young person. Those who experience SMI during this crucial developmental phase are burdened with additional demands related to the onset and management of their illness, which may negatively impact processes of social inclusion. Clinicians and researchers alike are aware of the need to focus on the social inclusion of young people with SMI. Arguably, though, they have been deprived of the evidence-based tools required to comprehensively assess the social inclusion of young people with SMI. This is a logical first step towards creating tailored social inclusion interventions. In this review, we have argued that explicit multi-dimensional measures of social inclusion incorporating objective and subjective indicators must be developed for young people both with and without SMI. We have also argued that such measures must be used in order to develop a better understanding of reported group differences in social inclusion between young people with SMI and those from the general community. We have posited Social Rank Theory as a useful framework for interpreting any such group differences. To extend these suggested future directions, scoping reviews may be required to identify a range of evidence-based interventions to improve the social inclusion of young people with SMI.

Footnotes

Acknowledgements

This paper was completed while the corresponding author was receiving a Research Training Programme scholarship from the Australian Government Department of Education and Training.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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