The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

Introduction: This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice. Theory and methods: The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure. Results: Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic), the internal environment (organisational structure and funding protocols), the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family. Discussion: The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population. Conclusions: As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their siblings about their experiences.


Introduction
The provision of care closer to home for children with complex care needs is a policy objective internationally [1][2][3]. For many of these children, their reliance on technology demands a tailor-made service to ensure that care within the home is viable and sustainable [4]. Progress towards achievement of this goal has been slow [3] despite growing evidence that homecare: provides a means of mitigating the barriers and isolation children and their families experience during the transition from hospital to home, can significantly reduce hospital utilisation, and reduces the cost of care for children with complex care needs [5][6][7][8][9].
Even with the benefits of homecare, the number of healthcare professionals, care settings and treatments that underpin individual care plans for children with complex care needs represents an often difficult and challenging exercise in care coordination for families [10].
An integrative review of the constituents of complex discharge, drawing from 34 key documents, highlights that "key working (a designated coordinator) is essential for overseeing the entire transition process and ensuring a communication loop across the health system" [11, p. 984]. While the intended role of case managers has been discussed, evaluated and analysed internationally [1,[12][13][14], using interchangeable titles such as Family Care Coordinator, Care Coordination Counselor, Nurse Care Coordinator, and Key Worker [15][16][17][18][19][20][21], there is no consensus within the literature internationally on the key constituents of this service in practice.
It is imperative to address the issue of appropriate care coordination for a growing population of children with complex health issues. Recent population prevalence estimates by the World Health Organisation suggest that one in every 33 infants are born with a congenital malformation [22], while in the UK estimates suggest that 32 per 10,000 children under 19 years have a life-limiting condition and ongoing complex needs [23]. Children living with long-term ventilator dependency have increased nearly 10 fold in the UK since 1999, with some geographical areas seeing a 30-fold increase in prevalence since 1994 from 0.2-6.7 per 100,000 [24]. Follow-up studies show that children with tracheostomies and positive pressure ventilation have a 5-year survival rate of 89% once home with 25% being decannulated [25], thereby reinforcing the need to have an adequate care coordination service available to these families.
Due to the paucity of research specifically in this area and the broad variation of job titles known to be in use, the aim of this systematic review was to evaluate and review empirical and theoretical literature, to provide a detailed critical overview of the nature and composition of the role of care coordinator for children with complex care needs. This approach is distinguished from other review methods by its underpinning structured methodology [26,27]. As such, it facilitates presentation of a quality-assessed evidence-based perspective on the role of a care coordinator in practice. The objectives of the review were to identify published accounts of the role of care coordinators; to carry out a quality appraisal of such accounts; to present a conceptual model that contextualises the role of care coordinator within the wider health service and to highlight the nature and composition of the role in practice.

Theory and Methods
The broad variation in job titles and environments in which care coordinators work, required a review process of sufficient breadth to encapsulate all aspects of the role and enough depth to provide the focus required to inform practice for children with complex care needs. The methodology was guided by a five stage process [26] which has been recognised for its rigour [28] and used across a range of nursing specialties [29,30]. The five stages are: problem identification, literature search, data evaluation, data analysis, and presentation of results.

Problem Identification
Problem identification involves specifying variables of interest (concept, target population and clinical area [26]). For the purposes of this review, the problem was identified as examining the nature and composition of the role of care coordinator (concept) for children (target population) with complex care needs (clinical area).

Literature Search
Reflecting best practice, the search strategy sought to identify literature from three perspectives, [26,27]. Conducted in February 2015, the first perspective identified and explored three bibliographic databases: CINHAL, Medline via PubMed and PsycInfo. In addition to key word searches, related MeSH terms, MedLine Theasaurus and CINAHL Headings were added to the search criteria and Boolean terms applied accordingly. Keywords 'care coordination' and 'care coordinator' were used to ensure that all potentially relevant articles were encapsulated ( Table 1).
Literature identified was subjected to ancestry and citation index searching to identify any further studies of relevance. Articles included were limited to peerreviewed quantitative, qualitative and mixed method articles, which were published in English between 2004 and 2015. This 11 year time frame was applied to reflect the contemporary nature of the problem under review and articles identified in English from Europe, North America and Australasia were considered to be culturally closest to the Irish context. The second perspective involved journal hand searching, a search to identify relevant conference proceedings and requests for additional references from the team's network of geographically dispersed researchers in this area [31]. The third perspective involved a generic internet search using Google Scholar, which also sought to identify other grey literature in the area. The SPICE Framework was adapted and applied to facilitate parameter definition and inclusion criteria (Figure 1). We considered a number of frameworks for this purpose, to enable the development of a clearly defined and well-structured review, including PICO and ECLIPSE. The emphasis on persective in this framework was particularly important as we were exploring a role that is a key axis in the interace of primary and secondary care.
The combined search resulted in 1,343 articles, of which 186 were identified as duplicates, leaving 1,157 articles for initial consideration. The abstracts were assessed against inclusion/exclusion criteria (Figure 2), 1,072 of which were then excluded. A further 48 were excluded after reading the full text, where they did not pertain specifically to care coordination, referred to the wrong patient group and where the outcomes were not of relevance to the area of care coordination. This left a sample of 37 articles to be quality assessed. It is acknowledged that despite efforts to the contrary, it is possible that papers in press or grey literature may have been missed during the course of the search. Of the 37 articles considered, 25     Although aspects of the children's illnesses were examined, no study set out to capture the views of children with complex care needs. Sample sizes varied from single case studies [15,32] to studies with over 200 respondents where quantitative data collection techniques were used.

Data Evaluation
The insights offered by methodologically robust studies were considered to offer the most credible and valid insights into the role of care coordinator. The updated Scottish Intercollegiate Guidelines Network (SIGN) hierarchy of evidence [33] was used to assess the strength of evidence upon which each study is based. This criteria is widely used in the literature to assess the quality of studies for inclusion in systematic reviews [34][35][36]. It offers a clear grading structure of level of evidence as follows: 1++ = high quality meta analysis, systematic reviews of RCTs, or RCTs with a very low risk of bias; 1+ = well conducted meta analyses, systematic reviews, or RCTs with a low risk of bias; 2+ = well conducted case control or cohort studies with a low risk of confounding or bias and a moderate probability that the relationship is causal; 3 = non-analytic studies; and 4 = expert opinion. The articles were grouped according to methodological approach: quantitative, qualitative, mixed method and reviews. Four reviewers worked in pairs, examining two groups each. Reviewers (MB, PL, DC, MC) independently assessed each article and then compared and discussed their findings with the other reviewer assigned to their group. The presence of potential bias is acknowledged as reviewers were not blinded to study identifiers such as author name, institution or journal [37]. Differences in opinion on gradings occurred for four papers and this was resolved through discussion.
Of the 26 studies, one [8] was graded as a 2+, 17 studies were graded as 3, (non-analytical studies), and eight were graded as 4 (expert opinion). In addition to the 26 empirical studies, three literature reviews received a rating of 3 [38][39][40]. The remaining eight articles were not considered to have sufficient evidentiary support.

Data Analysis
To enable rigorous, consistent, data abstraction and synthesis, the team extracted key data and findings into a preformatted table. This facilitated constant comparison and identification of emergent themes and followed best practice [26]. A standard template was designed to summarise descriptive information (author name(s), article title, publication date and study origin), methodological data (setting, sample size, study design and data collection methods), key messages (study aim, key themes, limitations) and outcome of the SIGN quality assessment ( Table 2).

Results
The main theme that emerged from the literature is that the composition of the role of the care coordinator depends upon an infinite number of contextual variables. The core elements of the intended role are consistently identified within the literature but the variables that determine the actual composition of the role appear numerous and unpredictable.

Intended Tasks and Activities
Sixteen papers reviewed discussed the range of tasks and activities intended to be undertaken by care coordinators: two quantitative studies [41,42], two qualitative studies [4,43], three literature reviews [36,37,44], three guidelines [12,45,46], four mixed methods studies [16,19,38,47] and two case studies [15,32]. Although the models of health systems differ internationally the core expectations of the activities carried out by care coordinators are consistent. Findings from these papers highlight the intended role of care coordinator as being one which encompasses tasks under four key headings: coordination of care needs, planning and assessment, information and specialist support, and emotional and practical support [12]. Coordination of care needs can include improving access, navigating the complexities of multiple service providers, and/or establishing service provision links [32,38,44,48,49] as well as functioning in a problem solving capacity as required [32]. Planning and assessment includes the coordination of future visits, studies or referrals [44,47,49], ensuring treatment plans are carried out [47,49], and the initial and ongoing identification of needs [15,36,37,49]. Information and specialist support involves the knowledge and provision of clinical and local information [39,45,48], acting as a point of reference for all enquiries related to the client [36] and sharing information with professionals and families [49]. Emotional and practical support refers to the provision of support in a crisis [48], making travel and education arrangements, accompaniment and support during hospital visits [32] and speaking on behalf of families in an advocacy capacity as required [45,48].
In addition to the role performed, four articles [4,16,19,42] highlight three other key elements inherent within the role: administration and logistics, self-care, and continuing professional development. Administration and logistics refers to the writing of case notes, travelling between clients, liaising with colleagues, attending internal meetings [19] and dealing with the bureaucracy involved in obtaining funding for specific pieces of equipment [4]. Such findings emerged during the course of focus groups [4], interviews with staff [19] and a questionnaire specifically designed to examine care coordination activity [42].

Intended Nature and Composition
Four articles highlighted the expected composition of the role of care coordinators: two activity tracking studies [13,42] and two qualitative studies, one with staff [50] and one with both staff and families [51]. Collectively they found that care coordinators are expected to have multiple skills, share a common vision, have a mutual respect for each other's role when dealing with the family, have the freedom to be innovative and work collaboratively, be able to function independently and work autonomously, manage time effectively, build networks, create and maintain relationships and problem solve when required.

Influencing Factors
Fraser et al.'s ethnographic study of the influences affecting resource allocation decisions draws attention to the difficulty that case managers have in categorising the influencing factors; "The words 'it depends' became a mantra" [52, p. 345

Contd.
Hillis  upon the actual composition of the role: the economic, political, socio-cultural, legal and technological environment (external environment) in which the health service provider operates; the structure, size and funding of the health service provider (internal environment); the individual skills and experience of the care coordinator (the individual); and the nature of the relationship and interaction between the care coordinator, the child and the family (the interaction).

The external environment
Multiple variables in the external environment are identified in the literature and highlight the fragmented nature of health service provision [32,40,41] and the disparate integration between services and the inequity of service provision [4]. This can lead to care coordinators operating within a specialised sphere of experience, unwilling to meet unmet needs outside their realm of expertise, and to parents being hindered by differences in terminology across service providers [41]. Funding is highlighted as a fundamental factor in service provision [47,50,52], which in turn is influenced by government policy [53].

The internal environment
Variables associated with the internal environment fall under two broad headings: structure and resources. Models of care can vary within the same umbrella service provider, particularly in relation to designated or nondesignated care models, which have a direct bearing on the caseload of care coordinators [41,54]. The length of time the service provider has been in place can also have a bearing on the range of activities carried out by key workers; the 'younger' the service, the more aspects of the role they often undertake [18]. Staffing and equipment are identified as key resource variables. For example, the challenges of recruitment and levels of pay as well as cover during sickness or leave are highlighted in the literature [15,42], there may be differences in levels of communication between disciplines [32,47], while others consider success to be dependent on a leadership that values the skills base of nurses and which places emphasis on the importance of relationships within the team [50,55].

The individual
In their secondary analysis of the activities undertaken by case managers from a range of professional backgrounds, Park et al. note that the success of the role is dependent "largely upon case managers' individual capabilities rather than clearly defined roles and functions" [56, p. 694]. This desirable range of capabilities and qualities is apparent across the literature sample. The range of backgrounds and level of experience held by care coordinators is also identified as a core variable; care coordinators, although predominantly from health visiting, nursing, teaching or social work, can also come from other allied health professional backgrounds, such as occupational or speech therapy [19,52,57]. This variation in skills and experience also impacts upon the level of educational preparation needed by each individual care coordinator, for example there is a need for health professionals working with children to strengthen their knowledge of child and family health [4].

The interaction
Four studies identified variations in time spent with the client and family, due to case load and the nature of the model of care (designated or non-designated), as a key variable that impacts the interaction between the care coordinator and the family [15,42,44,54]. In addition, the nature of the interpersonal relationship between the care coordinator and the client and their family varies. For example, an exploration of the lived care experiences of parents and keyworkers dealing with children with complex care needs identified that the professional is there to work with the family and not for the family, which can be a difficult balance to maintain [21]. This is supported in research which refers to the emotional burden and challenges of maintaining professional boundaries when working in such an emotionally charged environment [7,15], while others identify buy-in and a belief in the value of the service on the part of the family respectively as being integral to a successful relationship [55,58]. This may be extended further, in that it is suggested that the variation of parent and family characteristics and expectations may influence the relationship [47,58]. In particular some families expect to be told exactly what to do while others seek mutual consultation and collaborative decision making. Finally, at the crux of the relationship lies the child with complex care needs. The intensity of care needed is dependent upon the complexity of their physical and psychosocial conditions [51,59], which in turn has a direct impact upon the physical and psychosocial condition of the family.

Conceptual Map of Key Findings
Synthesis of the findings reveals the extent to which the actual role of the care coordinator is influenced by a broad range of variables. The conceptual framework (Figure 3) provides a visual representation of the dynamic process that influences the nature and composition of the role in practice. The model draws from general systems theory as a means of contextualising the role of the care coordinator within the wider health system in which children with complex care needs receive care. Katz and Kahn first used general systems theory to examine organisational behaviour as a series of open systems interactions, which are interdependent, consistent over time, cyclical and understood in the context of their interaction with each other and the external environment [60]. Conceptually, this presents as an input-throughput-output-feedback model, illustrating a knowledge framework focused on structure, relationship and interdependence between elements [60]. Input reflects the inflow of energy and information from the external environment, throughput reflects the reorganisation of engergies within the system and output highlights that the product of the interactions must be exported into the external environment. Systems perform as cycles of events and feedback ensures that internal information is used to adjust the intake of energy and information from the external environment [60,61]. Inherent within this approach lies the premise that human beings are also unique open systems that continuously interact with their external environment resulting in a state of constant change that, in health terms, presents in varying degrees of wellness. The model is also underpinned by the universally accepted familycentred care philosophy, which recognises the crucial nature of the family's involvement in ensuring the health and well-being of child, and demands that healthcare staff work in partnership with caregivers to provide children with a safe and effective care plan [62,63].

Discussion
The important contribution made by this systematic review is the contextualisation of the role of care coordinators. The infinite number of variables that exert influence over the composition of the role in practice have been inferred but not explicitly discussed in the literature. Policy internationally aspires to ensure that children with complex care needs are cared for in the home, even with increasing technology-based needs. This demands that care plans are tailor-made, placing demands on the structure and funding of communitybased care services. Whilst standardised job descriptions offer a means of justifying funding and ensuring cost-effective service provision, such standardisation contradicts the demand for tailor-made care plans. This leads to a number of implications for education and development, research, service delivery and policy.

Implications for Recruitment, Training and Development
It is essential that organisations and healthcare professionals recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Recruitment practices need to be an integral part of the strategic planning process, ensuring that adequate funding is in place to attract and retain high calibre staff who have the technical and interpersonal skills demanded by the role. As the literature highlights, the core elements of the role are relatively consistent internationally, which allows for generic training and development of staff, however, individual organisations must make provision for context specific education and training to meet the needs of their client population. This is particularly important for care coordinators without a specific healthcare background, to ensure that they have sufficient skills to be able to deliver a safe and effective service for the family. This work also highlights the importance of ongoing development of those in post to ensure that they have the skills necessary to deal with the evolving needs of the children within their care.

Implications for Policy and Service Delivery
The role of care coordinator is not consistently operationalised in some states internationally. It is important that the roles which do exist are evaluated to understand what is working well and to consider what is necessary to improve. However, the success of such a role is also dependent on the support structures around it. This requires agreement and direction at policy level on the criteria for competent care delivery and clarity in the responsibility and regulation of training and education of nurses and healthcare staff caring for these children.

Implications for Future Research
Despite the importance families place on having a care coordinator, the lack of consistent terminology creates challenges for rigorous comparisons across various service models. Levels of evidence underpinning research in this area vary, with the majority of studies being categorised as non-analytic studies or expert opinion. While this is to be expected at the exploratory stages of research in an area, as care practices are introduced and refined, research is required to evaluate innovative practices. The literature highlights the broad range of skills that care coordinators are expected to possess, yet little is known as to the extent to which these skills are innate or can be taught. Furthermore, as the provision of care closer to home is increasingly recognised as an objective for care for these children and their families [1][2][3] and a greater demand for tailor-made services for children with complex care needs is now omnipresent, the literature highlights a need for further research into the nature and composition of the interaction between care coordinators and families to determine the extent to which such services are being provided. Such studies must also take into consideration any potential variance in service provision, for example between rural and urban areas, to identify any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their siblings about their experiences.

Limitations
A number of interchangeable titles are used to describe the role of care coordinator nationally and internationally. Although the core elements of the role are often presented in a similar fashion, the absence of definitions and a lack of comprehensive, standardised job descriptions has led to a lack of clarity within the literature. Despite the variability of quality in relation to the levels of evidentiary support for studies, overall there was a consistency as to the extent of contextual variables that influence the role, suggesting that the findings are plausible.

Conclusion
The volume of articles identified as a result of the initial keyword search is illustrative of the extent to which research has been undertaken to improve the services and care provided for children with complex care needs. The literature highlights, however, that the role of care coordinator is one aspect of research that requires further investigation. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, the inconsistency across the literature highlights that much more needs to be done to improve services for this population if they are to continue being cared for in the community. The very nature of their complex needs means that their care is provided by a wide range of services, incorporating health, education, social and voluntary sectors, the fragmented nature of which demands effective care coordination is in place.