Care coordination for persons with mental health challenges: a scoping review

Abstract

Background

Care coordination is commonly employed to assist individuals with mental health challenges [MHCs]. However, its implementation in mental health contexts is inconsistent. The term, ‘care coordination’ is also used interchangeably with integrated care and case management. This review aims to (1) consolidate the literature on how, and in what contexts, care coordination has been used to help adults with MHCs access care from more than one service and (2) describe the challenges and benefits of implementing care coordination for adults with MHCs from the perspective of service providers, care coordinators and service users.

Methods

This is a scoping review that adopted methodological aspects of Arksey and O’Malley and those proposed by the Joanna Briggs Institute.

Results

Care coordination has been employed in a range of clinical and non-clinical settings. Eligibility for care coordination was predominantly restricted to individuals at high risk of deterioration or those unable to access multiple services independently. Care coordinators worked individually or as part of a team and were mostly mental health nurses or social workers. Care coordination was reported to include both clinical and non-clinical tasks. Clinical tasks included medication management, preparing coordinated treatment plans and implementing crisis triage. Non-clinical tasks included acceptance of referrals, identification of service user needs, developing a plan for service involvement, implementation of the said plan, and monitoring of outcomes. Benefits of care coordination included improved access to services, reduced consumer distress, and self-harming behaviour, a team approach to care, decrease in psychiatric hospitalisations, emergency room visits and arrests, and better interservice collaboration. Challenges to care coordination included continuing unmet needs, lack of service availability and health insurance, unclear processes causing confusion, difficulties in engaging with some service users, administrative complications, large consumer load and staff shortages, incompatibility of technology between systems, insufficient funding and limited community support agencies.

Conclusion

A better understanding of care coordination is needed that includes indications, eligibility criteria, coordination tasks, expected outcomes, as well as organizational and service system requirements.

Supplementary Information

The online version contains supplementary material available at 10.1186/s13033-025-00679-5.

Introduction

Care coordination, as a concept, was proposed several decades ago. Riley and Moses reported that it emerged as a means to mitigate the stress and anxiety experienced by patients with mental health challenges who were required to navigate multiple services [1]. Their report suggested that there existed a cohort of service users with complex needs that could not be addressed by one service alone and that the process of navigating the various services to meet those needs induced stress and anxiety in those individuals. In this review the terms mental health challenges [MHCs] and ‘consumer’ has been used throughout, to refer to individuals with diagnosed mental disorders who required care coordination to meet their multiple needs [2].

More recently, care coordination, was defined by Schultz and McDonald in their review, as ‘… the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care, to facilitate the appropriate delivery of health care services’ [3]. Similarly, in a European Psychiatry Association guidance paper, Gaebel, and colleagues [4], used the definition by Gröne and Garcia-Barbero [5] which refers to care coordination as, ‘The management and delivery of health services so that clients receive a continuum of preventive and curative services, according to their needs over time and across different levels of the health system.’ While these definitions of care coordination are fairly consistent in their essence, care coordination also appears to be confused with other terms such as integrated care and case management.

Care coordination and integrated care

Some authors state that the term ‘care coordination’ can be used synonymously with ‘integrated care’ [4]. However, this position may be contested. For instance, in a review of integrated care in the National Health Service, UK, the authors refer to Integrated care as an ‘organising principle for care delivery that aims to improve patient care and experience through improved coordination’ thereby implying that care coordination is a method of integrating care [6]. Similarly, while, Valentijn and colleagues adopt the framework of Plochg and Klazinga who refer to integration of care as a higher-level construct [7, 8], care coordination is more about needs assessment, bridging services [9], sharing information, coordinating, and managing transition [10]. Therefore, while the goal of providing seamless and continuous care could be integration of services, this can be achieved by coordination. In other words, care coordination is a method of integrating care.

Care coordination and case management

Care coordination is also confused with case management and several authors have tried to reconcile the two concepts [11–14]. The Case Management Society of America (CMSA) states that care coordination is a part of case management [15]. Similarly, according to the case management society of Australia, care coordination is a component of case management (a combination of functions performed by the case manager) [16]. Furthermore, a qualitative report of service provider views has suggested that case managers typically point their consumers to different services [17], while care coordinators actually helped service users communicate with and navigate those services [17].

Rationale for care coordination in healthcare

The typical realities of current healthcare are that they are fragmented, that high costs are concentrated on a small section of the population who have multiple and complex needs and that there is continuous emergence of new chronic-care needs [18]. There are also challenges to holistic care such as the lack of ownership between service providers, poor communication between them, and duplication of services [10]. Service users with complex needs are also unable to navigate the different services that contribute to their care [19, 20]. Together, these challenges provide a rationale for including care coordination as part of care for individuals with complex conditions that require assistance with accessing services from multiple agencies.

Contexts for the utilisation of care coordination

Care coordination has been employed for different categories of individuals such as refugees [21], young people [22], older people [23], veterans [24], and children [25]. With the goal of enhancing collaboration and linkage between various services, care coordination has also been employed in diverse settings such as primary health care [26], emergency departments [27], home care [28], as well as for conditions such as cancer [29], spina bifida [30], mental health and suicide [31–33].

Care coordination and mental health services

The primary objective of treatment for individuals with MHCs is to facilitate their engagement in a socially fulfilling and productive life. While this goal is more readily achievable for those with milder forms of illness, individuals with more severe conditions such as schizophrenia and psychosis face significant challenges in attaining a social and productive lifestyle. These individuals often experience difficulties in achieving personal recovery [34, 35]. Specifically, they may struggle to establish connections with society and may lack a sense of hope and optimism [34]. Their self-identity may be intertwined with their illness, leading to difficulties in finding meaning and purpose [34]. As a result, they may lack the empowerment necessary to assume control of their lives and have to contend with chronic disability and unemployment [36, 37]. These challenges may be more pronounced among those who also experience socioeconomic disadvantage [38]. Studies have shown that individuals with MHCs often have unmet needs related to accommodation, nutrition, transportation, access to other services, and physical health concerns [39–41]. Mental health services in their current form are not designed to address these needs [42] and the persistent state of unmet needs in this population results in substantial psychological distress.

Furthermore, while care coordination has shown to be able to meet unmet needs and reduce psychological distress in these individuals [43], its implementation within mental health services has been found to be challenging. In their study of care coordination in mental health services in the UK, Hannigan and colleagues report that while care coordination was part of mental health service policy in the UK, and a key worker was assigned to undertake that role, there was little in terms of changes on the ground, to facilitate its practice [44]. This resulted in a disparity between the understanding and the practice of care coordination.

Rationale for the study

While the extant literature contains numerous reports on care coordination, information specifically pertaining to its application for individuals with MHCs has yet to be systematically consolidated. A comprehensive review of the various methods in which care coordination has been implemented to assist individuals with MHCs, as well as the contexts in which it has been employed, represents a foundational step towards designing effectiveness studies of care coordination for this population. For the purposes of this review, while integrated care is conceptualized as encompassing any process wherein diverse service providers and agencies collaborate to provide care for individuals with complex needs, the concept of care coordination is interpreted as a specific method of integrating care through the involvement of a care coordinator or a care coordination team.

Methods

A scoping review was conducted to identify and collate the literature on care coordination for persons with MHCs. The purpose of a scoping review is to identify knowledge gaps, scope the body of the literature or clarify concepts [45]. It is useful for examining emerging evidence when it is still unclear what other, more specific questions can be posed and valuably addressed [46, 47]. As opposed to a systematic review, which is typically undertaken to synthesize the evidence from multiple studies on a well-researched topic, a scoping review aims to consolidate the available evidence on a topic area that is emerging [47] and can be undertaken ‘to identify key characteristics or factors related to a concept’ [45]. Care coordination utilised for persons with MHCs appears to take multiple forms with no clear universally identified model as yet. Since this review aimed to consolidate the characteristics of care coordination as implemented for this group of service users, a scoping review was identified as the methodology of choice.

We adopted methodological aspects of Arksey and O’Malley and those proposed by the Joanna Briggs Institute [JBI] [48–50]. Accordingly, we followed the following steps: (1) Identified the research aims [48]; (2) Established inclusion criteria based on the participant type, concept and context [49]; (3) Developed a search strategy [51]; (4) Identified relevant studies; 3) Selected studies for the review; 4) Charted the data; and (5) Collated, summarized, and reported the results [48]. Determining the participant type, concept, and context of the review, helped establish the a priori inclusion and exclusion criteria [49]. Unlike systematic reviews, scoping reviews are not designed to underpin clinical practice decisions. Hence, assessment of methodological quality or risk of bias of included studies is not mandatory [50].

Research aims

The aims of this scoping review are as follows:

1. To consolidate the literature on how, and in what contexts, care coordination has been used to help adults (aged 18 years and over) with MHCs access care from more than one service.

2. To describe the challenges and benefits of implementing care coordination for adults with MHCs from the perspective of service providers, care coordinators and service users.

Inclusion and exclusion criteria

Participant type

Participants included adults (18 years and over) experiencing MHCs with or without substance dependence requiring care from two or more service providers or professionals. Studies were excluded if they involved ‘children’, ‘kids’, ‘adolescents’, ‘students’, ‘epilepsy’, ‘spinal cord injury’, ‘medical home’, ‘pregnancy’, ‘cardiovascular disease’, ‘autism’, ‘sleep disorder’, ‘cancer’, ‘spina bifida’, ‘stroke’, ‘schools’, ‘operating theatre’, ‘Alzheimer’s disease’, ‘maternal’, and ‘kidney’.

Concept

The concept being reviewed relates to the characteristics of care coordination or coordinated care where a care coordinator or care coordination team works with different services to ensure that care delivered to the service user is seamless and holistic.

Context

Contexts for this review include mental and behavioural health services and services designed primarily for persons with MHCs who have multiple needs. Only studies in English were selected. No time limits were placed on the search.

Search strategy

Keywords were piloted in PubMed. Articles identified through this process were assessed to further refine the search strategy. Search terms and keywords were combined using the Boolean operator ‘OR’ and across components using ‘AND’. The master search was designed and trialled in PubMed. The searches were then converted and executed in SCOPUS, OVID Medline, PsycINFO and CINAHL databases as described below.

Search terms

The primary search terms included in PubMed were Adult* AND “care coordination” OR “care co-ordination” OR “coordination care” OR “co-ordinated care” AND mental* OR “mental illness*” OR “mental health” OR “mental ill health” OR “mental health disorder*”.

Specific terms used for each database are given in the supplementary file.

Study selection

All references were imported to Covidence for screening and study selection after which duplicates were removed.

Title and abstract screening

Title and abstract screening was performed independently by two reviewers [AI and ZD] and conflicts were resolved following discussion.

Full-text screening

Full text screening was also undertaken independently by two reviewers. The lead author reviewed the excluded papers a second time.

Results

Four thousand one hundred and twelve studies were identified in the search. Eighteen papers were selected for the review. Figure 1. shows the PRISMA flow chart with further details. Studies selected for this review included 6 qualitative studies, 3 descriptive studies and one each of: intervention study, pre-post-controlled study, electronic record review, interrupted time series analysis, mixed method study, systematic review, longitudinal study, scoping review and time series analysis. Eight studies were based in the USA, seven were from Australia, and one each from the UK, Norway and the Republic of South Africa. Studies were divided into two groups. Studies in group 1 described Characteristics of care coordination models and are given in Table 1. Studies in group 2 focused on the benefits and challenges of care coordination models and are presented in Table 2. Three studies [19, 44, 52] described both characteristics as well as benefits and challenges of care coordination models and were hence included in both groups.

Fig. 1.

PRISMA flow diagram

Table 1.

Characteristics of care coordination models for persons with MHCs

Reference; Study Design; Country	Context/Setting, Governance	Eligibility criteria for consumers	Professional qualification of care coordinator	Tasks involved in care coordination	Consumer inclusion in decisions
[53]; Intervention study of effectiveness; USA	Collaboration between hospital and homeless shelter	• Resident of the homeless shelter • Presence of schizophrenia or schizoaffective disorder or bipolar disorder or major depression • Presence of DSM-IV substance dependence diagnosis (other than nicotine) • Willingness to participate in care coordination.	Team of clinical social worker and nurse practitioner under the supervision of a psychiatrist	• Coordinated Treatment Plan (CTP) • Crisis Triage • Transportation Coordination • Treatment Liaison	Not clearly stated
[54]; Pre–post-controlled design; Australia	Acute adult inpatient mental health service	Admission for more than 5 days	Nurse	• Used a brokerage model • Was an information conduit between service user or significant others and clinicians • Advocated for, and coordinated professional and multisectoral inputs into service planning and delivery. • Developed and maintained relationships with service user, significant others, and community resources • First point of contact between the inpatient unit staff and external stakeholders. • Involved and informed community staff about progress during the service users’ admission. • Identified and reduced any barriers to discharge • Facilitated successful reintegration into the community	Not clearly stated but alludes to consumer involvement
[55]; Descriptive case study; USA	Veterans Affairs Health Care system	Consumers with complex needs and classified as high risk are referred to the Seamless Transition Committee (STC)	Team STC - includes nine leaders from various service lines	• Individual case review (15–20 min) • Recommendations from team members recorded in the electronic medical record • Treatment team is alerted	No
[56]; Qualitative study; Australia	Partners in Recovery initiative across Australia	Not stated	Social worker, vocational certificate 4 in mental health or relevant experience	• Review referrals for care coordination • Assess consumer needs • Develop and maintain partnerships to meet consumer’s recovery goals • Use flexible funds to buy services if necessary	Not clearly stated but alludes to consumer involvement
[17, 19, 43]; Qualitative evaluation; Australia	Partners in Recovery initiative [PIR] in Victoria - Consortium of Community Mental Health Support Services and Area Mental Health Service within the geographical area covered by a Primary Health Network	• Experienced severe and persistent mental illness • Had complex needs that required input from multiple agencies • Required substantial support to engage with these agencies, to meet their needs • Had no existing coordination arrangements in place, or arrangements were not meeting their needs, or were contributing to the problems experienced by the person • Were agreeable to participation in the PIR initiative and • Provided informed consent to participate	Mental health nurse or social worker	• Identify consumer needs • Assist consumer to prepare a service plan • Invite relevant service providers to form a care team • Being a single point of contact between consumers and other services • Coordinating care from multiple services • Assisting the consumer to become self-reliant • Judiciously using flexible funding • Achieving good outcomes for consumers with confronting behaviours • Outlining one’s role with consumers and maintaining boundaries	Yes
[44]; Qualitative study; UK	NHS trusts in England and Local Health Boards in Wales	Not stated	Mental health nurse, social worker, occupational therapist, psychiatrist	• Engaging, attending and supporting recovery – providing emotional support • Connecting patients to services and mobilising resources when service users move from one part of the system to another. • Quality of the relationship between care coordinator and service user is key to care coordination and to recovery outcomes	Yes
[57]; Review of Electronic records; USA	Guardian Ad Litem Services, Inc. (GAL) - developed specifically for Connecticut’s Department of Mental Health and Addiction Services and Connecticut’s Probate Court Administration.	• Diagnosis of a severe and persistent mental illness • Has a Fiduciary in place	GAL care coordinator is a Bachelor’s and master’s level social worker or non-social work staff with comparable levels of education and experience in care coordination	• Collects information on the consumers’ mental health diagnosis, mental health, medications, and existing benefits and entitlements. • Undertakes intensive collaboration via weekly outreach by phone, with all of the providers who provide care for the consumer. • Call team meetings of the providers depending on the complexity of the consumer’s needs, • Completes a monthly report that is distributed to all of the providers on the care team • Does not lead decisions, but attempts to improve communication and accountability from all providers on the consumer’s care team.	Not clearly stated
[52]; Interrupted Time Series Analysis; USA	Evaluation of a program intended to support guardians of adults with a severe mental illness appointed by the probate court —typically family members or attorneys	Participants in the Guardian Model program must be: • Referred by the State of Connecticut Department of Mental Health and Addiction Services (DMHAS), • Have a guardian appointed by the probate court, • Have an Axis I DSM-5 diagnosis other than or in addition to substance abuse or dependence and • Be involved with multiple services and supports with minimal success.	Program staff and program social worker	Tasks of program staff • Psychosocial assessment based on consumer report and chart review • Weekly or biweekly meeting of project social worker with consumer to engage and establish rapport • Development of a service plan with input from the consumer and all service providers • Implementation and adaptation of plan according to any changes in consumer circumstance and needs Tasks of social worker • Contacts service providers weekly, consumers biweekly and visits consumer monthly • Encourages consumer to attend all treatment planning meetings • Schedules treatment plan reviews in response to consumer needs • Measures life and service satisfaction six monthly using instruments • Makes recommendations for in-court reviews and case conferences when needed	Yes
[58]; Descriptive study ; USA	Nurse Care Coordinator role and activities within a large Social Security Administration demonstration program.	Individuals who had recently been denied Social Security disability benefits in 30 areas across the U.S.	Nurses within a multidisciplinary team	• Medication management support and preparing participants for visits with psychiatric care providers • Medical care coordination, collaboration, and advocacy • Educating participants and treatment teams regarding management of medical, substance use, and mental health conditions.	Not clearly stated
[59]; Descriptive study; USA	A veteran-informed social worker-led Advanced Care Coordination (ACC) program for dual-users accessing non-Veterans Affairs emergency departments in two communities.	Veterans who accessed non-Veterans Affairs [VA] emergency departments [EDs]	Non-VA ED staff, ACC social workers	• Initial notification • Social work comprehensive assessment • Individualized clinical interventions • Warm hand-off	Yes

Table 2.

Benefits and challenges of care coordination

Reference; Country; Study Design; Sample size; Reported limitations;	Context/Setting of care coordination service	Benefits	Challenges
[64]; Australia; Mixed methods; Sample size: Survey – 70 (37 Consumers, 12 carers and 21 consumer carers) Face-to-face discussion forum − 25 (17 female and 8 male) Reported limitations: Self-selected sample, predominantly female, uneven geographical distribution of participants	Partners in Recovery initiative in the Australian Capital Territory	Service users: Consumers and carers who reported a positive experience at the endpoint, within dimensions of: • Interpersonal communication (73–100%; mean = 87%) • Continuity and Coordination (73–93%; mean = 82%) • Comprehensiveness of services (87–93%; mean = 90%) • Impacts of care (80–93%; mean = 84%) Service providers: Service providers who reported a positive experience with dimensions of: • Team functioning (50–92%; mean = 76%) • Service delivery coordination (40–100%; mean = 74%) The role of care coordinators was pivotal to consumer and carer reports of program impact and to coordination between services which was built through personal connections.	Challenges included: • Lack of information continuity • Lack of role clarity for service providers, • Uncertainty about the legacy of the • program given the absence of formal agreements connecting different services.
[19]; Australia; Qualitative study; Sample size: 45 (15 care coordinators, 2 managers, 3 housing workers, 4 case managers, 1 drug and alcohol worker, 1 family services worker, 1 private psychologist, 2 personal helpers program staff, 7 consumers, 6 carers, 3 funding agency staff Reported limitations: Conducted in one of the 6 regions in Victoria; the study was conducted one year after commencement and did not reflect long term outcomes	Partners in Recovery initiative in Victoria	Service providers: • Addressed an unmet need in getting services to work together • Better interservice collaboration • Team approach to patient care • No duplication of services • Better understanding of consumer’s history and needs Service users: • Care is more consumer driven • Consumers feel valued • Consumers feel more confident in managing their illness • Improved access to services • Consumers accessed education and accommodation • Consumers moved from despair to hope • Consumers have better quality of life	Service providers: • Consumers with drug dependency did not engage • Consumers withdraw when services let them down • Families with complex problems including involvement of Child protection services
[60]; USA; Systematic review; Sample size: 21 studies Reported limitations: Only articles in English were selected; Studies had varying designs and endpoints.	Use of technology (e.g. electronic medical records) for the coordination and management of mental health care	• Easier patient access to health care providers • Medical and behavioural health providers could share information • More complete patient record • Better interdisciplinary communication • Better communication between caregiver and patient, especially in cases where geographic location or distance is a challenge	• Insufficient funding for health information technology, • Deficient reimbursement plans, • Limited access to technologies, • Cultural barriers, • Underperforming electronic health record templates
[44]; UK; Qualitative analysis of interviews with care coordinators Sample size: 28 Reported limitations: None	Care coordination in public mental health services of England and Wales	Care coordinators: • Care coordination connects service users (with complex needs) to a complex system of care. • Mostly services are tailored to individual needs with service users at the centre of decision making, except when risk was involved. • Quality of the relationship between care coordinator and service user is key to care coordination and to recovery outcomes	Care coordinators: • Administratively challenging with constant changes in required documentation • Performance management removed focus from collaboration with service user. • Large consumer load • Inconsistent protocols for training • Incompatibility of technology between systems • Generic role meant service users were not always allocated the care coordinator with the right skills (nurse, social worker) • True care coordination was often reduced to ‘firefighting’ due to limited resources
[61]; Republic of South Africa; Qualitative multiple case study design; Sample size: 48 mental healthcare providers Reported limitations: No consumer input.	Mental health system in KwaZulu-Natal Province (KZNP)	None reported	Service providers: • Inequitably resourced catchment areas • Unclear referral systems • High staff turnover • Chronic staff shortage and adverse working conditions • Limited community support systems
[65]; Australia; Semi-structured interviews Sample size: 31 (14 recipients of the program, 17 members of consumers’ support network, 3 members of the consumer and carer advisory group) Reported limitations: None reported	Partners in Recovery initiative of Brisbane South Primary Health Network	• Empowerment of service users (Not feeling the need to hide mental illness; being able to do things that were not possible previously) • Transformation (Reduction in need for Crisis Assessment and treatment – police and Ambulance) • Enhanced social connections (improvement in self-confidence, being able to trust and interact with people)	Service users: • A sense of loss and fear of the future once supportive relationships were ended • A lack of collaboration and coordination in care • Inappropriate or inadequate support • Persisting unmet needs with housing, physical needs and social connections • Short episode of care with no option for continuing support • No communication with the general practitioner
[43]; Australia; Longitudinal study of change in consumer needs Sample size: 337 consumers Reported limitations: No data were available on consumer recovery; no control group.	Partners in Recovery initiative [PIR] in Victoria of the Gippsland Primary Health Network	Significant reduction in unmet needs as measured by (Camberwell Assessment of Needs, Short Appraisal Schedule). Decrease in the most frequently reported unmet needs were psychological distress, (89% − 27%) daytime activity (72% − 22%), company (67% − 22%), physical health (66% − 22%), Employment/volunteering (58% − 16%), and access to other services (56% − 10%). Meeting accommodation needs resulted in a change in needs related to money, childcare, food, safety to self, education and access to other services.	High dropout rates were perhaps due to exacerbation of symptoms or service user movement between jurisdictional boundaries.
[62]; Norway; Scoping review; Sample size: 16 articles Reported limitations: possibility of having missed relevant articles; narrow scope;	Perceived challenges influencing coordination in care transitions from hospital to the community for people with MHCs, including the challenges identified by people with MHCs, their family members and caregivers	Not stated	Service users and carers: • Challenges influencing community adjustment Ongoing psychotic symptoms and • Absence of meaningful daily activities. Challenges influencing continuity of care 1. Lack of information about discharge, medication regimens, warning signs of deterioration, service availability and access. 2. Some family members complained about not being listened to in decision making or not receiving enough information to contribute to decision making. 3. Poor access to services due to lack of insurance, discontinuation of programs and frequent physician changes.
[63]; USA; Qualitative study; Sample size: Not clearly reported Reported limitations: Reporting bias to show one’s agency in better light; small sample size restricted to rural providers in one state.	Care coordination implementation challenges experienced by six behavioural health agencies in a rural region of Arizona state	Not stated	Service providers • Financial challenges such as inadequate compensation for care coordination activities • Regulations and reporting requirements hinder clinical judgement and creativity • Organisational challenges such as lack of organisational integration • Role clarification such as differing expectations and assumptions by medical and behavioural health providers about case coordination • Sharing of patient information between services • Medical provider attitudes or stigma toward people with behavioural health conditions • Staff training on coordinated care
[52]; USA; Interrupted Time Series Analysis; Sample size: 217 Reported limitations: Lack of a comparison group	Evaluation of a program intended to support guardians of adults with a severe mental illness appointed by the probate court —typically family members or attorneys	Significant decrease in 1. Psychiatric hospitalisations 2. Days in psychiatric hospital 3. Emergency room visits and 4. Arrests Spending reduction of $85,808 per consumer in the first year with suggested sustained decreases in spending over time.	Not stated

Contexts and setting

Studies selected in this review that describe characteristics of care coordination models had diverse contexts and settings where care coordination was implemented for persons with MHCs. They included a collaboration between a hospital and a homeless shelter [53], an acute inpatient mental health service [54], the Veterans Affairs healthcare system [55], Australia’s Partners in Recovery initiative or PIR [17, 19, 43, 56], the National Health Service [NHS] [44], Guardian support services [52, 57], Nurse care coordination within a large social security organisation [58] and an advanced care coordination program for dual-users accessing non-Veterans Affairs emergency departments [59].

Studies selected to describe benefits and challenges of care coordination models also represented a variety of settings including a systematic review on the use of technology [60], the public mental health services in England and Wales [44], the mental health system in KwaZulu-Natal Province of South Africa [61], a scoping review on the perceived challenges influencing coordination in care transitions from hospital to the community [62]; care coordination challenges in six behavioural health agencies in a rural region of Arizona state [63]; and the implementation of Australia’s PIR initiative in the Australian Capital Territory [64], Brisbane, Queensland [65], and Gippsland, Victoria [43].

Eligibility for care coordination

Eligibility for care coordination varied widely depending on the setting and need. For example, while criteria for care coordination at the acute mental health inpatient service was being admitted for more than five days [54], eligibility at a social security administration demonstration program was for those who had recently been denied social security disability benefits [58]. Eligibility to receive care coordination from the PIR initiative required having a severe mental illness, and complex needs requiring support from multiple agencies with no previous coordination arrangements in place [17, 19, 43]. Eligibility for the two guardian support services were slightly different from each other. While one required the individual to have a severe mental illness and a fiduciary in place [57], the other required being referred to by the State Department of Mental Health and Addiction Services, having a guardian appointed by the court, having a DSM-5 diagnosis and being involved with multiple supports and services [52]. Eligibility for care coordination described by Sjoberg and colleagues required for the Veteran to be a dual-user accessing non-Veterans Affairs emergency departments [59]. Eligibility criteria for care coordination in a Veterans Affairs service required that consumers have complex needs and be classified as high risk [55].

Professional qualifications of care coordinator

In most programs, care coordinators could be either mental health nurses or social workers [17, 19, 43, 44]. In some programs, the designated care coordinator was a nurse [54], while in others it was a social worker [56, 57]. Care coordinators worked individually or as part of a team, which included social workers [52, 57, 59], nurse practitioners [53], psychiatrists [53] and nurses [58]. In one report, care coordination was undertaken by a committee that included nine leaders from various service lines [55].

Tasks involved in care coordination

Care coordination consisted of both clinical and non-clinical tasks. Clinical tasks included collecting information on the consumers’ mental health diagnosis, mental health, medications, and existing benefits and entitlements [57]; preparing a coordinated treatment plan [52, 53]; implementing crisis triage [53]; individual case review [55]; educating participants and treatment teams regarding management of medical, substance use, and mental health conditions; medication management support [58], preparing monthly reports for service providers on the care team [57]; and individualised clinical interventions and enabling a warm hand-off [59].

Non-clinical tasks included psychosocial assessment based on consumer report and chart review [52, 59]; review of referrals for care coordination [56]; assessment of consumer needs [17, 19, 43]; developing a service plan [17, 19, 43, 52] (The term ‘service plan’ has been used instead of ‘care plan’ to refer to the approach followed in accessing the different services involved in the care of the individual according to their needs. A ‘mental health care plan’ is a treatment plan developed by the treating doctor [66]); implementing the service plan [17, 19, 43, 52]; developing partnerships with services [56]; coordinating care by multiple agencies [17, 19, 43, 44, 54, 56], consumer advocacy, being a single point of contact between services, clinicians and consumer or an information conduit [17, 19, 43, 54, 58]; conducting regular meetings with the consumer and service providers [52, 57]; coordinating transport, serving as treatment liaison [53]; providing emotional support [44]; using flexible funds [56]; making recommendations for in-court reviews [52]; routine measurement of life and service satisfaction [52]; and facilitating integration into the community [54].

Six reports clearly stated that consumers were actively involved in care coordination [17, 19, 44, 52, 59, 67]. In three reports, consumer involvement was not clearly stated [53, 57, 58]. Two reports alluded to consumer involvement [54, 56] and one report did not demonstrate consumer involvement [55]. The most common technologies used in care coordination were ‘telemedicine’, ‘internet web-based communication’ and electronic health records [60].

Benefits of care coordination

Benefits are presented as those that were specifically attributed to service users and providers as well as those that were program-wide findings.

Service users

Service users from the study of Australia’s PIR initiative in the Australian Capital Territory appreciated interpersonal communication, continuity and coordination, comprehensiveness of service delivery, and positive impacts of care [64]. Service users of the PIR initiative in Victoria reported that care coordination made care more consumer driven, made them feel valued and more confident, improved their access to services, enabled them to access education and accommodation, provided better quality of life and helped them to move from despair to hope [19]. Similarly, service users of the same program implemented in Brisbane, Queensland, reported feeling empowered and experiencing a transformation following care coordination in terms of improved mental health, reduced self-harming behaviour and anxiety, more secure housing, stability in tenancy and improved personal safety [65]. Service users of this program also described enhanced social connections with services, and community activities thereby reducing isolation and loneliness [65].

Service providers (including care coordinators)

Service providers involved in Australia’s PIR initiative in the Australian Capital Territory appreciated team functioning, and coordination of service delivery [64]. Those from Victoria indicated that a hitherto unmet need for service integration was met, with better understanding of consumer needs, interservice collaboration, a team approach to care and no duplication of services [19]. Care coordinators of the public mental health services of England and Wales stated that they helped service users connect to the right service within a complex health system, and tailored care according to their needs while including them in all decisions [44]. Care coordinators from Australia’s PIR initiative in the Australian Capital Territory and the public mental health services of England and Wales reiterated that the quality of their relationship with the service user was pivotal to care coordination and recovery outcomes [44, 64].

Program benefits

Care coordination using technology enabled easier access to service providers by service users, better communication between stakeholders, sharing of patient information between service providers, and more complete records [60]. Programmatic benefits of care coordination implemented by Australia’s PIR initiative in Victoria included significant reductions in psychological distress, and service user needs related to daytime activity, company, physical health, employment/volunteering, and access to other services [43]. Care coordination to support guardians of adults with a severe mental illness in the USA reported significant decreases in psychiatric hospitalisations, days admitted in a psychiatric hospital, emergency room visits and arrests, as well as a decrease in costs per consumer [52].

Challenges of care coordination

Challenges are presented as those that were specifically attributed to service users and providers and those that were program-wide findings.

Service users

Challenges reported by service users of Australia’s PIR initiative included a sense of loss and fear of the future once supportive relationships were ended, a lack of collaboration and coordination in care, inappropriate or inadequate support, continuing unmet needs related to housing, physical needs and social connections, short episode of care with no ongoing support, and a lack of communication between the care coordinator and the general practitioner [65]. Australia’s PIR initiative, was a time-bound pilot program of care coordination for individuals with severe mental illness, implemented nationally across 48 catchment areas by local non-governmental agencies [19]. Although all agencies were expected to follow standard care coordination guidelines, on-the-ground realities were influenced by various factors including the number and type of services available.

Challenges experienced by service users who were transitioning from the psychiatric hospital to the community included ongoing psychotic symptoms, lack of service availability, lack of health insurance, discontinuation of programs, lack of involvement in decisions and absence of meaningful daily activities [62].

Service providers

Challenges reported by service providers involved in Australia’s PIR initiative in Brisbane included unmet or unrealistic expectations of their service, financial constraints, isolation and housing difficulties of service users, difficulties with transitions within and across programs, particularly given the episodic nature of mental illness, a lack of clear processes causing confusion [65]. Service providers involved in Australia’s PIR initiative in the Australian Capital Territory reported a lack of information continuity, uncertainty about the precise role of the care coordinator, high turnover of staff and funding uncertainty [64]. Service providers involved in Australia’s PIR initiative in Victoria reported difficulties with engagement when service users were drug dependent, losing service users who were let down by services and managing families with complex vulnerabilities [19]. Care coordinators from within the public mental health services of England and Wales reported administrative challenges due to constant changes in required documentation, loss of focus due to performance management, large consumer load, inconsistent protocols for training, incompatibility of technology between systems, mismatches between care coordinator skills and service user needs, and limited resources [44]. In South Africa, service providers reported that care coordination was challenging due to inequitably resourced catchment areas, unclear referral systems, high staff turnover, chronic staff shortages, adverse working conditions and limited community support systems [61].

Service providers from behavioural health agencies in rural Arizona reported challenges such as inadequate compensation for care coordination activities, regulations and reporting requirements that hindered clinical judgement and creativity, lack of organisational integration, differing expectations and assumptions by medical and behavioural health providers about case coordination, barriers to sharing of patient information between services, medical provider attitudes and stigma toward people with behavioural health conditions and staff training in coordinated care [63].

Program challenges

Challenges to care coordination using technology included insufficient funding for health information technology, deficient reimbursement plans, limited access to technologies, cultural barriers, and underperforming electronic health record templates [60]. One report of Australia’s PIR initiative in Gippsland, Victoria, showed high drop-out rates which the authors assumed were due to exacerbation of symptoms or service user movement between jurisdictional boundaries [43].

Discussion

This review consolidated the literature on how, and in what contexts, care coordination has been used to help adults with MHCs access care from more than one service. The review also describes the challenges and benefits of implementing care coordination for adults with MHCs from the perspective of service providers, care coordinators and service users.

Lessons learned

Care coordination as a concept is understood and practiced differently in different settings. The rationale for implementing care coordination for persons with MHCs was found to be consistent across most studies [19, 52, 53, 55] and that was to enable them to access care from two or more services, which would otherwise be challenging due to the fragmentation of health and community services. However, the methods and tasks involved varied widely.

The implementation of care coordination in the settings identified in this review involved specific tasks including reviewing and accepting referrals based on eligibility requirements, identifying service user needs, working with the service user to prepare a plan for service involvement, implementing that plan and monitoring outcomes. However, no single model was found to implement all of the above tasks. This is perhaps due to factors such as differences in the structures of health systems, the absence of a universally accepted model of care coordination and the interchangeability in the use of the term, case management.

Care coordination has been conducted either by individuals independently or as part of a team [52, 57]. Care coordinators were typically mental health nurses, social workers or someone with similar qualifications, although occupational therapists, nurse practitioners and psychiatrists were also reported to take on care coordination roles [44, 53]. Care coordinators needed to have knowledge and understanding of mental health conditions [44, 53], as well as the needs of the service user, and the types of services available [17]. Eligibility for care coordination has been mostly restricted to those, who, by virtue of experiencing MHCs are considered at high risk of deterioration or are unable to access multiple services by themselves.

The implementation of care coordination occurred either externally to mental health services [19, 64] or internally, from within the service [44, 54, 59]. Outcomes reported for service users appeared to be better when the care coordination role was not combined with other clinical roles [19, 44], and when the service users were actively involved in decisions made about their care [19, 52, 62, 65, 68]. Outcomes were reported to be deficient when service users had drug dependency or complex vulnerabilities [19]. Outcomes of care coordination that were generated from this study must be viewed with caution as the reports they were obtained from, were not tested for rigor.

Other reported barriers to optimal care coordination included high consumer load, insufficient training, heavy administrative burdens [44, 63], insufficient funding [60], a lack of available services and community support systems [61], difficulties with sharing information between services, and stigma toward people with MHCs within the medical profession [63]. Sustainability of care coordination was reported to be an unmet need and financial challenges were a barrier in some settings [62].

This review also found that the terms ‘care coordination’ and ‘case management’ are commonly used interchangeably because case managers carry out tasks that are both clinical and non-clinical. While in the USA [52, 57] and UK [44], care coordination is part of a clinical role, in Australia’s PIR initiative [19, 56], , care coordination tasks were non-clinical and implemented outside of the clinical mental health system.

We contend that the process of case management in mental health settings is inherently clinical and requires to be undertaken by clinicians. It includes clinical tasks such as reviewing consumers’ mental health diagnosis, and medications, implementing individualised clinical interventions and crisis triage [55, 58, 59]. On the other hand, tasks associated with care coordination are fundamentally non-clinical. It does not require a clinician to be able to identify needs of a consumer and organise care with two or more community agencies. This is true when the consumer’s needs are non-clinical such as developing partnerships with services [56]; coordinating care by multiple agencies [17, 19, 43, 44, 54, 56], consumer advocacy, coordinating transport [53], and providing emotional support [44].

However, when the consumer’s clinical information needs to be shared with other health services for the treatment of other physical health conditions (comorbidities) or substance use [54, 55] in order to develop an integrated treatment plan [52, 53], the term ‘treatment coordination’ might be a more appropriate term. In Australia, coordination of care and support for individuals with MHCs from non-clinical community agencies is currently sponsored by the National Disability Insurance Scheme [NDIS] and is referred to as ‘Support Coordination’ [69]. Hence, there is a need to distinguish between coordination of treatment from different clinical services and coordination of care and support from various non-clinical community agencies, as the skills required for these two tasks are quite different.

Limitations and future research

A notable limitation of this study is the exclusion of the term ‘case management’ from the search strategy that could in turn have excluded some relevant studies. This was done for two reasons. First, the primary purpose of this review was to consolidate the literature on the implementation of care coordination and not case management, of which there are others [70, 71]. Accordingly, it was considered necessary to obtain reports from those who reported on care coordination. It is likely that reports on case management that were excluded from this review included models and tasks that were similar to that of care coordination but if the authors of those reports believed that they were reporting on case management, it was considered out of scope. Second, future research needs to treat care coordination as a separate entity within the construct of integrated care and in order to provide direction for future research, it was necessary to clarify and define the term to prevent it from being confused with other related terms.

A number of papers reported on the utilisation of care coordination for individuals with MHCs and physical health conditions such as spinal cord injury, pregnancy, cardiovascular disease, cancer, spina bifida, and kidney disorders. In several of these instances, care coordination was initiated due to these physical health problems. Including these reports ran the risk of distracting from the focus of this review and were hence excluded. In addition, studies of care coordination that used other terminology were excluded [72]. There does not appear to be a standard care coordination model for persons with MHCs. This could be due to reasons such as wide-ranging indications for its use, and confusion about the term and its meaning. As long as services remain fragmented, care coordination will remain an unmet need.

Future research therefore needs to focus on effectiveness studies of models of care coordination in mental health that outlines their setting, eligibility criteria, care coordination tasks, expected outcomes, cost effectiveness and sustainability. Other areas for future research include training curricula for care coordinators, effectiveness of care coordinator training, and methods of sharing information between services, care coordinators and service users. Care coordination might be an integral component of personal recovery-oriented services [42]. Further research is also required on the type of services needed to facilitate personal recovery among individuals with MHCs. Research on these topics will progress the field and inform more widespread implementation of care coordination, which in turn could improve outcomes for service users and reduce costs.

Conclusion

Care coordination for individuals with MHCs encompasses a range of specific tasks. These tasks can be executed by a nurse or social worker, either independently or as part of a multidisciplinary team across various settings. Although it is possible that care coordination for persons with MHCs may offer benefits, this can only be confirmed by rigorous effectiveness studies. Implementing a standard care coordination model more widely necessitates clear guidelines regarding indications, eligibility criteria, care coordination tasks, anticipated outcomes, and organizational and service system requirements. Future research should focus on effectiveness studies of care coordination models that incorporate expected outcomes, cost-effectiveness, and sustainability. Future research should also focus on training requirements for care coordinators and digital platforms for information sharing among participating services.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

A.I. conceived the study, and designed the methodology; Z.D. conducted the data collection; A.I. conducted the analysis with input from Z.D.; A.I. wrote the original draft. Both authors have read and agreed to the published version of the manuscript.

Funding

No funding was received specifically for this work.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

N/A.

Consent for publication

N/A.

Competing interests

The authors declare no competing interests.