Effectiveness of a social inclusion program in people with non-affective psychosis

Despite the lack of unanimous definition in the literature, social inclusion can be generally conceptualised as the opportunity for the individual to participating in key functions or activities and in economic, social and cultural life of his/her community, exercising the rights of his/her citizenship and enjoying an adequate standard of living and wellbeing [1].

People suffering from psychosis experience lower quality of life and reduced social inclusion [2, 3]. They are more likely to live alone [4], be unemployed [5], have fewer significant relationships [6] and are at high risk of experiencing “social disadvantage” [7]. Moreover, available evidence indicates that social isolation represents a risk factor for cardiovascular diseases [8] and a major cause of excess mortality [9]. Social disadvantage and psychosis are tightly intertwined making it difficult to disentangle their cause-effect relationship. On one hand, having fewer social relationships may be the result of psychosis and of negative symptoms in particular, such as emotional and social withdrawal, low level of energy and motivation, which considerably interfere with the ability to form and maintain a social network [10]. On the other hand, social disadvantage and discrimination suffered by psychotic patients, such as unemployment, loss of productivity and societal role, may reduce the skills and opportunities necessary to form and maintain supportive social networks. This vicious circle can, in turn, generate low self-confidence/self-esteem and internalised stigma, which interfere with satisfactory social functioning [5, 11]. Furthermore, smaller social networks associate with worse outcomes such as increased risk for hospital admissions [12], poorer functioning and worsening of symptoms in subjects suffering from schizophrenia [4].

Indeed, social inclusion interventions represent a milestone in the process of recovery as they aim at facilitating psychological adaptation [13]. Improving social networks correlates with better physical and mental health outcomes, both in affective disorders [14, 15] and psychoses [16]. Stable relationships, living with someone and being employed may also have a protective role [7]. Interventions aimed at increasing social participation in people with mental health problems can effectively increase sense of belonging and reduce psychological distress [17, 18]. In addition, social interventions can improve the overall engagement with mental health services [19]. Therefore, improving social outcomes in psychosis represents a paramount objective for mental health services in terms of economic sustainability and ethical implications [20].

An additional aspect worth considering more in depth is the impact of public and internalised stigma on people with mental health problems [21]. Over-concern with failure and rejection, experienced by psychotic patients can give raise to dysfunctional attitudes [22] characterized by avoidance and lack of motivation. These attitudes, in turn, can lead to social and vocational disengagement [23]. The internalization of negative societal stereotypes is associated with self-stigma, whose consequences often translate in the so called “why try” effect [24, 25]. Social interventions in mental health should necessarily consider the internalised stigma as a major target. Self-stigma is expressed by over-concern with societal prejudices towards mental illness and mental health service users. Internalised stigma has been reported to be closely related to long term outcomes of personal and social recovery [26]. The hypothesis formulated is of a close relationship between internalised stigma, level of activity and social inclusion [27, 28]. The experience of stigmatization, despite interfering with recovery, tends to be rather subjective in nature and does not always reflect an actual experience of discrimination [29‐31]. Furthermore, it is possible that even within stigmatizing contexts, people may feel indifferent or even being prompted to react positively boosting their self-confidence and self-esteem [32, 33]. Reaction to stigma in mental health represents a major predictive factor for personal and social recovery. Interventions aimed at modifying negative subjective beliefs on mental illness may prompt individuals to activate or develop resources and social skills necessary to achieve a full recovery.

Finally, social interventions in mental health should encompass patients’ subjective views and preferences, consider their needs and diversity and engage with community and voluntary sectors to provide a broad range of services as opposed to a “one-size-fits-all” approach [34].

To date, only a minority of social interventions in psychosis have been investigated to evaluate their impact on level of activity, quality of life, to assess their effectiveness in improving internalised stigma, reducing negative attitude and perception of patients towards their mental illness [35, 36]. Developing an evaluation system able to assess different interventions represents a major challenge, as a wide range of approaches can be used to promote social inclusion. Nevertheless, systematic research on social intervention indicate that studies using experimental designs, representative samples and sufficient follow-up length are deemed necessary to support the evidence and using it to make recommendation to mental health policies [17].

Since 2011, the Department of Mental Health and Substance Abuse in Modena has implemented the program “Social Point”, which provides social inclusion interventions and promote active social participation for patients suffering from severe mental illness.

The program has three main objectives:

In line with the principles of participation and citizenship, and pursuing inclusion and empowerment of service users, Social Point program collaborates with the local authorities to build “collective projects”, actively involving both people with mental health problems and the general population. Besides, personalized “care pathways” are guaranteed and built on personal views and preferences of service users. Social Point workers are called to facilitate processes leading to change and ultimately to recovery, rather than pursuing standardized projects. The areas of intervention covered by “Social Point” encompass: advice and awareness on mental illness, education and skills development, one-to-one and group sessions of self-help, physical and leisure activities.

The experience gathered so far has shown that even users with the most severe psychopathological conditions can greatly benefit from individualized rehabilitation projects, which can change the perception of the social context towards them, via the development and recognition of abilities, resources and proactive attitudes.

The aim of this study was to assess, in a comparative cross-sectional design, whether the social interventions provided by “Social Point” associate with better outcomes in the areas of personal and social recovery, with particular focus placed on social functioning and level of activity, and subjective measures in the areas of self-esteem, self-stigma and perceived quality of life of subjects under the care of the mental health services in Modena.

Subjects who completed the “Social Point” program (SP) and those in the wait list (WL) did not show significant differences with respect to socio-demographic characteristics. The two groups were also homogeneous with respect to diagnoses (Table 1).

The median duration of SP program was 548 days. During this period, the median number of social inclusion activities per patient was 4.

The analysis of GAF total score showed a higher level of functioning in those subjects who had completed SP program [SP mean = 67.4 (SD = 13.4) vs WL mean = 52.0 (SD = 17.5), p = 0.0006]; the SP group mean score fell within the “mild impairment” (70–61) range, whereas subjects in the WL group presented a “moderate impairment” (60–51). SP subjects reported higher scores at the Measure of Activity in Psychosis [SP = mean 2.8 (SD = 0.9) vs WL mean = 2.2 (SD = 0.9), p = 0.0129]. The HoNOS/MHCT showed a significant difference between the two groups, with regards to the “Social problems” subscale, which presented more favourable scores in SP subjects. On the other hand, the level of self-esteem observed, as measured by means of the Rosenberg scale, resulted higher in the WL group compared with SP group [SP mean = 25.6 (SD = 1.8) vs WL mean = 26.8 (SD = 2.4), p = 0.0231] (Table 2).

Internalised stigma (ISMI) and quality of life (WHOQOL-BREF) scores were more favourable among the WL group compared with SP subjects. Significant differences were found within the following domains: “Discrimination experiences” and “Social withdrawal” at the ISMI scale (Table 3) and “Social relationships” and “Psychological” at the WHOQOL-BREF (Table 4).

No significant difference was found between the two groups with respect to admission rate and length of stay. The admission rate was 19% in the WL group and 7.4% in the SP group (p = 0.3827). The median length of stay was 48.5 days in the SP group and 27.5 days in the WL group (p = 0.2994).

Correlations analyses between variables of “Social Point” program and the assessment measures showed a significant dose-effect relationship between the number of social inclusion activities per patient and the score on “Social problems” (Spearman’s rank correlation = − 0.5368, p = 0.0039) and “Symptoms” (Spearman’s rank correlation = − 0.3926, p = 0.00428) MHCT/MHCT (Fig. 1). Higher number of social inclusion activities was associated with an improvement in clinical and social dimensions.

The number of social inclusion activities per patient was also associated with better outcomes at the GAF (Spearman’s rank correlation = 0.4026, p = 0.0373) and the Measure of Activity in Psychosis scale scores (Spearman’s rank correlation = 0.5159, p = 0.0059) (Table 5).

With regard to the number of social inclusion activities per patient, a significant correlation was found on the HoNOS/MHCT items: “Cognitive problems”, “Problems with activities of daily living”, “Problems with living conditions”, “Strong and unreasonable beliefs in non-psychotic disorders only” and the domain “Stereotype” at the ISMI scale.

No correlation was found between the scores on the items of the ISMI scale, WHOQOL-BREF, the Rosenberg Self-Esteem Scale and number of social inclusion activities per patient.

Overall, the results of the study support the evidence that the implementation of social inclusion programs in people suffering from severe mental illness determine significant improvement across several psychosocial dimensions [13, 17, 18]. Indeed, the comparison between the two groups showed that subjects who completed “Social Point” program presented lesser impairment in different areas of social functioning (GAF and HoNOS/MHCT) and had better scores in terms of level of activity (Measure of Activity in Psychosis).

However, in spite of the objective and substantial advantages found in the areas of functioning and activity, the results of self-administered scales investigating self-esteem (Rosenberg), perceived quality of life (WHOQOL-BREF) and internalised stigma (ISMI) indicated a worse profile in the SP group compared with WL subjects. In this respect, it can be hypothesized that subjects participating to social inclusion programs are implicitly pushed to step out of their “comfort zone” and exposed to certain environmental stressors which would not normally encounter, if left marginalized from the community. Moreover, they may end up internalizing their social isolation and accept it as a “natural” condition, whereas the efforts requested by rehabilitation programs may be frustrating at times. This process may represent an explanation for the apparently contradictory nature of the results observed at the self-administered scales. However, longitudinal analyses are necessary to clarify whether the self-perception of quality of life and internalised stigma, which in our samples were significantly different on several dimensions (i.e.: “Social relationships” and “Psychological” at WHOQOL-BREF and “Discrimination experiences” and “Social withdrawal” at ISMI), may gradually decrease overtime due to the social skills and opportunities gained via social inclusion interventions.

Results also stress the importance of intensive and enduring social inclusion interventions. The analysis carried out among subjects who completed “Social Point” program, showed that those who were involved in a higher number of social inclusion activities had better scores on clinical dimensions and social functioning. This result reinforces the notion that interventions aimed at individual recovery cannot be, by any means, a standard procedure but should necessarily be individualised. The interventions provided by “Social Point” follow this principle and involve different agencies in the community, which increases the possibility of providing patients with a wide array of activity choices and multiple individualized projects.

Indeed, higher number of activities per patient associated with better outcomes in terms of cognitive functioning and better clinical presentation such as the HoNOS/MHCT item “Strong and Unreasonable beliefs”, which is consistent with the growing evidence that treatment of cognition represents a pivotal step in severe mental illness rehabilitation [44]. A higher number of activities was also found to be associated with better scores at the HoNOS/MHCT item “Activities of daily living” suggesting potential benefits in terms of problems with basic tasks such as eating, washing, dressing, but also requiring more complex skills such as budgeting, organising where to live, occupational and mobility planning and self-development.

Finally, it can be postulated that adequate duration of social inclusion activities may positively influence several outcomes, not necessarily confined to those within the social domain. As a matter of fact, subjects who stayed on “Social Point” program for longer, showed better HoNOS/MHCT scores with respect to psychopathology (i.e. item 6 “Hallucinations and delusions”).

The study has some limitations that need to be acknowledged. It was conducted in one specific geographic area of Northern Italy and it is uncertain whether the results would translate to similar population in other countries. The cross-sectional design of the study does not allow to draw any definitive conclusion about the cause-effect relation of the variables considered. Despite the high similarity of the two groups, we cannot exclude that subjects who were given priority to the “Social Point” program, over those on the wait list, were already more amenable and willing to participate due to a less severe impairment of social functioning and/or milder clinical picture. Further investigation with larger sample and longitudinal design is warranted to replicate the result of this study and clarify the role of psychosocial intervention in severe mental illness.

This study advocates structured social inclusion programmes for people suffering from psychosis, suggesting that they may be an effective intervention. Moreover, in consideration of the observed importance of providing personalised interventions with a wide array of activities and lengthy programmes, it would be highly desirable that the availability of such treatment option became a routine practice for community mental health services.