Community Rehabilitation for Youth with Psychosis Spectrum Disorders

INTRODUCTION

With the aspiration of integrating care within the community, the deinstitutionalization of mental health care for people with psychotic disorders was one of the catalysts of the development of what is now broadly referred to as community rehabilitation.^1–4 The guiding philosophy behind this approach to treatment is that individuals with serious mental health concerns receive care that is person-centered, striving toward both symptomatic and functional recovery, with care embedded within their community. Putting this philosophy into practice has yielded a collection of interventions designed to help people with psychosis and related concerns develop skills that assist in daily living, moving beyond approaches that limit attention to clinical symptoms. With its origins firmly rooted in an effort to provide care in the contexts in which clients carry out their lives, community rehabilitation emphasizes functional recovery in domains such as school and work, interpersonal relationships, and tasks of basic daily living.^1,5 At the same time, functional recovery is supported by a concurrent focus on symptomatic functioning through an integration of targeted therapy and pharmacologic methods.

Across all domains of intervention, a recovery-oriented approach to treatment is taken in community rehabilitation interventions, promoting active engagement, autonomy, and respectful collaboration between clients and providers.⁶ This is not unique to community rehabilitation programs, but reflects the broader move toward recovery-oriented care for individuals with psychosis across the life span.^7,8 Individuals experiencing the early phases of psychosis endorse autonomy and empowerment as important aspects of the recovery process,⁹ highlighting the importance of recovery-oriented, person-centered approaches in early interventions for psychosis spectrum disorders.

Although community rehabilitation provides significant incremental value to individuals at all stages of development, there may be specific advantages for young people who often experience the onset of psychosis spectrum disorders during critical periods of development. Gold-standard, evidence-based intervention models for people in the early stages of psychosis therefore include developmentally tailored rehabilitation components, with clients showing greater functional and symptomatic improvement, better engagement in treatment, and higher quality of life than peers in typical care.^10,11 Important improvements in functional domains like school and work seem to be linked directly to provision of community rehabilitation interventions.¹² Although the scope of community rehabilitation for early psychosis is vast, this article focuses on 4 specific interventions within community rehabilitation: care coordination, cognitive rehabilitation, supportive employment and education, and peer mentoring.

CARE COORDINATION

Challenges

Ample and concerning evidence suggests that many individuals who have been hospitalized for a psychotic illness are discharged without connections to mental health services, and as a result, often enter a “revolving door” of discharge to readmission.^13,14 In a review of the supportive care needs of individuals experiencing their first episode of psychosis, practical needs, or the need for active assistance with the tasks of daily life, were found to be both endorsed and unmet among youth across studies.¹⁵ Although it is an almost universal challenge for adolescents and young adults to gain competence and independence in daily life tasks as they transition to adulthood, research indicates that youth with psychosis experience significantly greater difficulties as compared with their peers without mental health concerns, particularly in the domains of housing, financial independence, educational attainment, and social functioning.¹⁶ Thus, rehabilitation interventions that provide practical support to youth with psychosis are vital to promote not only engagement in care, but also in life and work within the community.

Current Interventions

Having a mental health professional work alongside clients in the early phases of psychosis to facilitate connection to services and identify and address unmet needs is at the core of all comprehensive community rehabilitation efforts. Several terms exist in the literature to describe this clinical intervention strategy and care partnership, including “case management” (perhaps the most commonly used), “care management,” or “care coordination.”¹⁷ Despite the widespread use of the term “case management” in the health care field, we use the term “care coordination” (CC), as have others in the field,¹⁸ given the illness-centric etymology of the word “case” (originally a medical term referring to the clinical state or symptomatic presentation of an ill or diseased person¹⁹), as well as its connection to stigmatizing terminology for those who experience mental health concerns (eg, “nut case” or “head case”²⁰). Similarly, style guides for both the American Medical Association and the American Psychological Association suggest careful use of the word “case,” cautioning against dehumanizing conflation between a person and a manifestation of illness.^21,22 Regardless of the label, the role of care coordinators (CCs) is to create a partnership with clients toward the goal of improving the well-being and quality of life of the client, often through the enhancement of care, including care continuity, availability, and efficiency, often across treatment domains and teams.²³

Practices within CC can be diverse and broad in scope. Gold-standard CC provision is flexible, focused, and client-centered.²³ Best practice suggests limiting the number of clients on a coordinator’s care roster so that the appropriate amount of personalized time and attention can be dedicated to each individual. Strategies for engagement tend to take a strengths-based approach, and are both centered on and driven by clients. Techniques or approaches used in CC can include brokering of care with other providers; limited provision of psychotherapy, skills training, and psychoeducation; strengths-based assessment and treatment planning; outreach and community-based care; and peer-based care.¹⁸ Aspects of cognitive-behavioral therapy also have been integrated into the role of CCs, and can include specific strategies for engagement, stigma reduction, problem identification, problem solving, and monitoring symptoms and functioning.²⁴ CCs strive to connect clients to appropriate specialty care intended to support successful reintegration into the community, often requiring CCs to provide their services in the community and as frequently as needed, rather than the typical weekly 45-minute clinical hour delivered in an outpatient setting.

Despite its ubiquity in clinical care, CC has not received unmitigated support from empirical investigation. Compelling evidence does suggest that intensive, flexible care programs that integrate aspects of CC (such as assertive community treatment [ACT]) are typically effective in improving service engagement and utilization, clinical and functional outcomes for individuals with later-stage psychosis, whereas CC interventions alone (eg, intensive case management) are generally thought to be effective in improving factors such as role functioning, emergency service use, and quality of life.^18,25–27 The impact of CC on social functioning or hospitalization reduction, however, as well as the direct contribution of CC on outcomes seen in multicomponent intervention research is less clear.

Similar to the broader literature on adults with more long-standing illness, CC is considered an essential ingredient in gold-standard practices within interventions for youth at risk for or in early stages of psychosis, despite lack of extensive evidence of unique contributions of its specific role on outcomes.^14,28–32 CC elements, when added to first-episode treatment, may be helpful in improving engagement and connection with outpatient care, reduction in hospitalizations, and improvements in symptoms and functioning.^13,30 Given the manifest differences in the needs of youth as compared with adults, a sensitivity to developmental considerations can enhance efficacy of treatment when CCs are working with transition-aged youth and young adults. Skills in working in areas such as education, employment, peer relationships, and transition to a more autonomous lifestyle are all required attributes particularly when working with people in the early phases of psychosis who tend to fall within this developmental window.¹⁶

COGNITIVE REHABILITATION

Challenges

Deficits in cognitive functioning are thought to be core features of psychotic illness, resulting in impairments across a broad range of functional domains. Individuals with schizophrenia show both generalized and specific deficits across domains of cognition. Compared with nondiagnosed peers, people with schizophrenia tend to show impairments in memory, language, executive functioning, attention, and global cognitive functioning.^33,34 The first episode and early stages of psychosis also seem to be associated with similar deficits in nature and magnitude to those seen in chronic psychosis.^35–38 Premorbid and longitudinal evidence suggests deficits often emerge in childhood and adolescence.^39–41 As it pertains to community rehabilitation, cognitive deficits experienced by individuals with psychosis in high-risk, early-course, and chronic phases of illness are related to impairments in key domains of functioning in the community, including social and vocational outcomes, quality of life, and general daily living skills.^42–47

Current Interventions

The intervention strategies within the field of cognitive rehabilitation for psychosis may be categorized into 2 separate traditions: cognitive enhancement, or interventions that seek to ameliorate cognitive deficits, and compensatory approaches, or programs that aim to address functional impairments caused by cognitive deficits.^48,49

Cognitive enhancement

Cognitive enhancement interventions seek to improve cognition of individuals, with the underlying goal of eliminating or reducing targeted deficits.⁵⁰ Cognitive remediation therapy (CRT), perhaps the most well-known and studied cognitive enhancement intervention, targets cognitive capacity and processing, knowledge and cognitive schemas, motivation, and metacognition.⁵¹ Other enhancement interventions include cognitive enhancement therapy (addressing social and nonsocial cognitive deficits⁵²), attention shaping (which uses operant learning principles to address neurocognitive deficits⁵³), and integrated psychological therapy for schizophrenia (a group-based, manualized cognitive-behavioral therapy program combining neurocognitive interventions with other psychosocial treatments, including social cognition, communication, social skills, and problem solving⁵⁴). Empirical studies evaluating the feasibility and efficacy of cognitive enhancement interventions for individuals with schizophrenia suggest that such programs are generally feasible and effective in improving cognitive outcomes; however, positive functional outcomes are generally seen only in those interventions that are combined with other rehabilitation or psychosocial interventions like vocational skills training or psychotherapy.^52,54–56

Similar to the established literature on adults with schizophrenia, cognitive enhancement interventions for youth experiencing early/first-episode psychosis are generally associated with improvements in cognition compared with control conditions, although effects are somewhat smaller when compared with those seen in individuals with schizophrenia, potentially due to higher baseline cognitive performance in those with first-episode psychosis.⁵⁷ Additional research has indicated CRT is effective compared with control treatments in improving specific outcomes like social functioning and negative symptoms for youth with first-episode psychosis.⁵⁸ Despite some promising findings, it is unclear whether these effects are due to adjunctive psychosocial interventions (eg, social skills training). Regardless, similar to the literature for later-stage illness, cognitive enhancement programs typically appear more effective and linked to more functional improvement when paired with other psychosocial rehabilitation interventions.⁵⁷

Recent years have seen an interest in cognitive enhancement interventions for youth in prodromal or psychosis-risk phases of illness. Early results hold promise for feasibility of treatment, and suggest some reasons for optimism regarding efficacy; however, no work to date has demonstrated a robust link between enhancement intervention and improvement in functional domains independent of other psychosocial rehabilitation programs.^59–64

Cognitive adaptation

Unlike enhancement strategies, cognitive adaptation or compensation programs for individuals with psychosis do not seek to improve cognitive deficits per se, but rather promote pragmatic strategies and interventions that assist clients in engaging and succeeding in functional domains.⁴⁹ Examples of these interventions include cognitive adaptation training (uses comprehensive assessment and implementation of adaptive strategies like using checklists, organization methods, and other environmental supports) and errorless learning interventions (breakdown of tasks into small components ordered by complexity, with training and aids given to prevent errors and promote automation in task completion).⁴⁹ Cognitive adaptation interventions for individuals with schizophrenia are associated with improvements in symptomatic and functional outcomes including community functioning, task or work performance, negative symptoms, social functioning, life satisfaction, decreases in caregiver burden, and improved treatment adherence.^65–72

Despite promising findings for interventions targeted toward individuals in later stages of illness, the literature on compensatory cognitive interventions for youth with psychosis is relatively small. Although Hansen and colleagues⁷³ did not find that cognitive adaptation training provided additional benefit when combined with ACT in a multicenter study for individuals with first-episode psychosis, some recent work has documented feasibility of adaptive interventions, as well as improvements in global, occupational, and life quality domains in pre-posttest comparison.^74,75 Other research working with individuals in their first episode of psychosis has indicated that compensatory cognitive interventions are superior to treatment-as-usual in improving cognition, but not functional outcomes.⁷⁶ Although the results from research on adaptive cognitive interventions detailed previously, as well as additional preliminary work,^77–79 show promise for both feasibility and efficacy of adaptive cognitive interventions for youth in the early stages of psychosis, a great deal more work is needed to establish the incremental value of this rehabilitative intervention above current evidence-based practices.

Enhancement versus adaptive strategies

More work is needed to definitively identify which intervention strategies are best practice for youth with psychosis; however, current clinical thinking posits that cognitive enhancement interventions are particularly relevant for youth in earlier stages of psychosis relative to individuals with chronic illness. From a prevention perspective, cognitive enhancement techniques are thought to be indicated in early stages of psychosis with the hopes of preemptively staving off progressive cognitive deficits, while cognition is still relatively intact. In contrast, adaptive interventions are theoretically considered appropriate for deficits or functional impairments that are long-standing or intractable.^80,81 Whether either approach, when implemented early, is actually able to prevent the cognitive deficits and consequential functional impairments often seen in individuals with chronic psychosis is as of yet unclear.

Empirical work consistently demonstrates that effects of enhancement and adaptation programs are strongest when paired with other psychosocial rehabilitation intervention strategies.⁵⁷ Reflecting this, many current cognitive remediation programs combine both restorative exercises as well as adaptive strategies to promote functioning.^52,77,82 Thus, the distinction between enhancement versus adaptive strategies may be less meaningful, as most approaches integrate some of both. Nonetheless, future mechanism studies may provide important insights regarding which cognitive interventions and strategies are the most effective forms of care for youth in early stages of psychosis.

SUPPORTIVE EDUCATION AND EMPLOYMENT

Challenges

Youth with developmental and psychiatric disabilities often experience significant challenges in the domains of education and employment.⁸³ Work and educational experiences of youth with psychosis generally follow this trend, with such individuals experiencing significant difficulty in academic functioning, completion of degree programs, employment security, and financial stability.^{16,39,84–88} Beyond the direct impact that cognitive deficits and other illness-related factors associated with psychosis may have on work and school, the onset of psychosis often occurs during periods critical for educational and vocational success, and can disrupt the trajectories of young people in these domains. The vicious cycle of symptom and effect, if not addressed via targeted interventions, may therefore have lasting or even irreversible negative implications for youth.

Current Interventions

Given the deficits associated with early psychosis in the domains of school and work, as well as the stigma and barriers experienced by individuals with psychosis,⁸⁹ supportive education and employment (SEE) rehabilitation programs are vital elements of early intervention for youth with psychosis. SEE programs typically provide aid and support to individuals in the domain of education with the goal of facilitating completion of educational programs or training. Common elements within these models include CC, educational skills development, and client advocacy.⁹⁰ Similarly, SEE programs targeting employment seek to facilitate a pathway from training to acquisition of jobs by promoting client choice, competitive employment, work incentives, supported job search, skills training, and individualized job supports when engaged in work.⁹¹

One of the most widely studied supported employment interventions is Individual Placement and Support (IPS). IPS increases participation and engagement in work among individuals with severe mental illness,⁹¹ as well as employment rates in youth in the early stages of psychosis.^92,93 Other treatment models, such as the SEE program integrated into the NAVIGATE care program for first-episode psychosis,⁹⁴ or other modified IPS intervention models,⁹⁵ have adapted the principles and methods of IPS to integrate educational as well as vocational components, with promising results for both work and school engagement.

As compared with those receiving typical treatment, youth engaged in evidence-based, supported education/employment programs show superior involvement in work and/or school.¹² SEE programs, particularly those focusing on vocational interventions, show high levels of empirical support across the field, with a review by Addington and colleagues⁹⁶ indicating that among early psychosis treatment modalities, supported employment programs represented one of the few interventions that demonstrates an “A” level of evidence regarding efficacy. Although educational outcomes in IPS and other supported education/employment programs are not as robust when compared with vocational,⁹² evidence seems to suggest that provision of educational and employment support is feasible and effective when delivered in one unified program.⁹⁵

Despite the promising evidence regarding efficacy of supported education and employment interventions for youth with psychosis, a number of issues still exist regarding the long-term success in these domains for youth. For instance, there are mixed findings with respect to equal access and engagement in these services between minority and majority groups, with some findings suggesting worse outcomes for people who identify as ethnic minorities.^97,98 In addition, those with the best vocational outcomes in first-episode psychosis treatment programs are individuals with higher premorbid cognition and functioning, fewer concurrent symptoms, and previous work history or educational attainment.^44,98 Thus, future clinical and investigative work is needed to identify for whom SEE programs are not working, and what adaptations or modifications may be effective in promoting universal benefit of this rehabilitative program.

PEER SUPPORT

Challenges

Similar to those with more chronic forms of illness,⁹⁹ many people in their first episode of psychosis report limited social support networks and high levels of loneliness.¹⁰⁰ Stigma is an additional barrier for individuals with psychosis experience across a myriad of domains, with significant implications for care engagement and pursuit of goals.^101–103 In addition, youth in early stages of illness report the need to connect with and receive information from peers with similar lived experience.¹⁵ Peer support interventions represent an accessible form of care that can address these concerns, with peer advocates lending value and perspective to mental health treatment teams in their efforts to engage and aid youth in the early stages of psychosis.

Current Interventions

Having faced and overcome similar challenges as the clients with whom they work, peer workers often serve as role models and advocates for people less far along on their illness trajectory. Peer work tends to be relationship based, focusing on connection; recognizing strengths; and creating a sense of partnership, mutuality, and respect. Although there may be variability in how to approach their role with clients, it is thought that a peer’s self-disclosure of his or her lived experience conveys empathy, and ultimately increases self-efficacy of the client.^104,105 Peers can provide services in many forms and formats, including services unique to their role (eg, peer education, empathic support from the perspective of a peer, peer mentoring), or services considered more consistent with those provided by a traditional mental health professional (eg, care management, psychoeducation, traditional therapy).¹⁸ Given the broad nature of the services they deliver, peer workers can fall along a continuum of nonpaid peer support to professional peer.¹⁰⁶

The published research in this area provides a wide range of goals and processes used by peer workers. Strategies could include, but are not limited to, attempts to increase service engagement, self-disclosure to motivate change, the provision of skills training, and empowering their client/peer to be stronger advocates within their own treatment team.¹⁰⁴ Peer services are delivered in group as well as individual formats, with the frequency and duration varying without clear guidelines.¹⁰⁷ The variability in modality and process makes it difficult to generalize conclusions about a more single construct of “peer support,” nonetheless, the theme that some number of services are being provided to clients by others who have similar lived experience is a unifying thread.

Despite the clear need for such services, the evidence for effectiveness of peer support interventions remains controversial. A well-cited review in 2014 by Lloyd-Evans and colleagues¹⁰⁷ concluded that the evidence did not support the efficacy of peer-led interventions for people with psychosis. The investigators highlighted a variety of methodological considerations, however, that likely impede a clear view of the true state of affairs with respect to the impact of peer-to-peer support. Issues such as recruitment strategies, the nature of samples, the content/delivery of the supports, the type of peer support provided (eg, peer-delivered mental health services vs mutual support), and the quality and completeness of outcome data all likely confounded findings. Recent reviews indicate this pattern still holds regarding efficacy of peer support in later-stage psychosis,¹⁰⁸ reflecting a broader trend in the literature on efficacy of peer support programs for mental health concerns.^106,109 Unsurprisingly, there is a similar lack of consensus or dearth of work regarding the efficacy of peer interventions for youth in early stages of psychosis. Given the promising nature of initial intervention trials for young people with other mental health concerns,¹¹⁰ as well as qualitative work demonstrating the importance of peer support programs for families and youth,¹¹¹ this field seems promising. Alvarez-Jimenez and colleagues¹¹² recently completed a randomized clinical trial comparing an online intervention for youth with early psychosis to treatment-as-usual, with the intervention including peer-to-peer online social networking and peer moderation, in addition to interactive online therapy and expert moderation. Findings from this and other work on peer support for youth in early stages of psychosis will shed light on the efficacy of peer support interventions for young people, as well as the specific adaptations required for individuals in earlier stages of illness.

As peer involvement in care continues to evolve and becomes more mainstream in care, a variety of issues remain that will have implications for this area. One issue that requires awareness is the notion of roles. In particular, at what point does someone who is salaried and credentialed shift from the role of a peer to that of a professional in the eyes of his or her client, and how does that impact their relationship and efficacy? In addition, traditional program development and evaluation (and research) tend to be driven by professionals. Creating room for more active and equal peer collaboration from the ground up at every level of activity will have implications for the impact of peers for clients. A further consideration for work with youth where there is no existing guidance is potential age/generational differences between peers, and how these differences may impact services.

The existing research in the area of peer workers is as varied as the provision of support by peers. Issues including the definition of a “peer”; role of peers in care; frequency, duration, and intensity of peer services; fidelity to a model; reliability across studies; inclusion of specific outcome measures; use of both qualitative and quantitative approaches in harmony; and appropriate conducting and reporting of randomized controlled trials all contribute to confusion in this area. Of additional note, no compelling research in this area provides particular guidance with respect to differential effects of peer services for youth versus adults. These issues and more await future research.

SUMMARY

Community rehabilitation programs reflect the broader trends in mental health care toward recovery-oriented, outcomes-focused services. Interventions for youth with psychosis share this approach, attempting to reduce long-term disability and improve functioning through preventive, multi-modal, client-centered treatment. Since the model of early intervention in psychosis was first introduced, there has been a rapid expansion in policy, research, and clinical advances to aid the ultimate goal of reducing or even avoiding the disability often associated with chronic psychosis. Community rehabilitation is an important component of this intervention movement.

The current article reviewed 4 community rehabilitation interventions for youth in early stages of psychosis: CC, cognitive rehabilitation, supported education and employment, and peer support. Within each intervention domain, the evidence suggests that current rehabilitation programs are generally feasible and have the potential to aid in functional recovery and care engagement among youth in early stages of psychosis. Some interventions, however, such as supported education and employment, seem to be associated with greater quantity and quality of empirical support compared with other intervention domains requiring further work to establish feasibility and specific efficacy among youth, such as cognitive rehabilitation strategies.

More work is needed to establish the mechanisms behind successful findings. Understanding mechanisms will also contribute to more personalized approaches to the implementation of these interventions, as the field becomes more sophisticated in addressing questions related to what strategies, and at what intensity, work for whom. In particular, generalizability of rehabilitative interventions to diverse settings and populations, as well as the adaptations needed for success of such programs across contexts and individuals, remain a priority. Despite a need for continued work, the existing evidence suggests the essential nature of community rehabilitation efforts to support youth with early stages of psychosis. CC, cognitive remediation, supported education/employment, and peer support all represent crucial elements of care within a successful recovery-oriented approach to working with young people with psychosis.

KEY POINTS.

• Similar to individuals with chronic psychosis, youth and young adults with early psychosis often experience poor functional outcomes.

• Community rehabilitation programs for psychosis, including care coordination, cognitive rehabilitation, supported education and employment, and peer support, are effective complementary interventions for youth with psychosis.

• Some community rehabilitation programs, including supported education and employment, for youth with psychosis are empirically supported and should be integrated into standard care, whereas others appear promising, but require further evidence to demonstrate feasibility, efficacy, and relevance for youth.