Children’s complex care needs: a systematic concept analysis of multidisciplinary language

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children’s CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children’s CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis. Conclusion: Children’s CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children’s CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.


Introduction
Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs) [36,47,146].However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing.The aim of this paper is to report on a systematic analysis of the concept of CCNs.Concept analysis typically Bentails synthesizing existing views of a concept and distinguishing it from other concepts^with the purpose of resolving gaps or inconsistencies in the current knowledge base [70].Evolutionary concept analysis seeks to go beyond offering a dictionary definition of a concept.It does this by breaking apart the cluster of key characteristics that through common use collectively form the real definition of a concept [109].Examination of these characteristics is critical to understanding the concept.According to Rodgers [109], it is necessary to understand the antecedents, defined as events or phenomena usually found prior to concept occurrence, and the consequences that follow as a result.A thorough knowledge of the attributes, antecedents, and consequences of CCNs from a multidisciplinary perspective is important, given the wide engagement of many disciplines in the care of these children.Without a clear conceptual foundation, there is ambiguity which in turn can compromise the quality of research or theory construction as the area develops [134].

Methods
Rodgers' evolutionary method [109] was used to systematically analyze the concept of children's CCNs.This method was selected to contextually situate the evolution of CCNs within the multidisciplinary care environment, and is particularly well suited to this issue given the changing and dynamic nature of complex care.According to Rodgers, concept development is evolutionary as it continues and may change over time and is influenced by contextual factors, which may be disciplinary, cultural, or theoretical.Analysis uses an inductive approach and seeks to identify what is common, the purpose of which is to identify data that is relevant to the attributes of the concept and its contextual features.Thematic analysis is used to identify major themes presented in the literature.

Data sources and search strategy
A three-strand approach was used to create a systematic search.An initial scoping search was run in PubMed and CINAHL to identify appropriate control language using MeSH and CINAHL Headings.A secondary scoping search was then conducted identifying appropriate keywords related to the following: complex needs, complex care, children, disability, and chronic illness.The final search was run using a combination of the keywords and control language based on three central concepts of children: complex care, disability, and chronic illness.PubMed, CINAHL, and PsycINFO were searched.The search was limited to English-language literature published from 1990 through to 31 December 2017 as the issue of complex health prior to this time generally referred to the medical management of children with challenging acute conditions in the secondary care environment.The reference lists of the resulting articles were reviewed to identify any other pertinent articles and only two articles were identified in the time period before 1990.An additional hand search was conducted and a gray literature search was completed using the following: OpenGrey, the Systems for Information on Grey literature in Europe (SIGLE), World Health Organization (WHO), National Technical Information Service USA (NTIS), and the National Academies Press.
The initial search retrieved 465 articles that met the inclusion criteria.Next MBr and CK reviewed the abstract of each article, with some articles read completely, to determine inclusion.Articles that did not examine complex care needs of a child were excluded.The review process yielded a final sample of 140 articles (Fig. 1).

Data extraction and analysis
Each of the 140 articles was analyzed for data relevant to the attributes, antecedents, and consequences of CCNs, using a coding framework based on Rodgers' evolutionary method [109] (Table 1).The development of these questions was the subject of considerable deliberation.Question 1 was straightforward; however, we had initially contemplated framing questions 2 and 3 as BWhich factors (antecedents) are proposed to precede CCNs?^and BWhat are the consequences of CCNs?^Drawing on our own previous work and from discussion with wider clinical and academic colleagues, we collectively agreed that seeking to answer these questions would be too broad at this stage of knowledge development in the care of children living with CCNs.For example, if we were to fully answer the initial question 2 proposed, we would need to include exploration of all possible causes of CCNs (genetic and in-depth diagnostic issues) which were not the intended focus of this paper.As the focus of this analysis was to explore papers that reflect a child living with CCNs, we framed our questions to focus on the multidisciplinary language used to describe the antecedents (individual, historical, and sociocultural contexts) and consequences that can influence this.The final questions used therefore reflect this early point in global understanding of CCNs where there is a dominant focus on seeking to address and alleviate burden.
Comparisons were made among the articles to identify whether similarities and differences existed between disciplinary-specific uses of the concept.The framework was reviewed by MBr and CK, who then organized recurring themes into categories (attributes, antecedents, and consequences).

Key attributes of children's CCNs
Synthesis of key themes and significant findings from the literature identified the defining global attributes of children's CCNs as (a) heterogeneous and substantial, (b) individual and contextualized, and (c) continuing and dynamic.

Antecedents of children's CCNs
Having identified key global attributes of children's CCNs, the next step in this concept analysis involved the identification of the antecedents of the concept, which are phenomena or events that provide individual, historical, and sociocultural contexts as foreground to the unique and dynamic nature of CCNs.These included (a) child and family characteristics, (b) medical advances, and (c) existing healthcare systems.

Child and family characteristics
In addition to the age and developmental stage of the child which were identified previously as attributes of children's CCNs, gender [65,73,112] and race [10, 73,74] were found to be strong foreground factors that offer individual context to the nature of the CCNs.The gender of children with CCN was a factor influencing many elements of the children's and families' experiences.Having special healthcare needs, and particularly those with greater medical complexity, was more likely to be associated with being male [73], while being a parent of a male child with a disability was associated with lower reported quality of life and family functioning scores [65].Being a female child with special healthcare needs was a predictor of the provision of adequate services to support transition to adult healthcare services [112].Poorer health outcomes and life expectancy were observed in children from minority ethnic groups across a range of chronic and complex conditions [10] and difficulties accessing healthcare services are reported in minority groups, particularly immigrant families [74].The increasing development of disease-specific registries and national databases offers greater illumination of these health disparities, but those which operate on broad ethnic groupings may limit exploration of outcomes for children from ethnic subgroups or multi-racial families.

Consequences
The concept analysis identified three main areas of consequence, reflecting the multifaceted impacts of children's CCNs at individual and societal levels: (a) clinical care of the child, (b) family impact, and (c) structural and political impacts.

Clinical care of the child
The concept analysis found that complexity in children's care needs are derived from the multiple domains and levels of complex care required throughout the lifespan.Typically, parent(s) assumed the responsibility for their child's care as primary caregivers [7,22,23,44,45,50,69,84,85,121,133,150].However, parents' associated willingness and capacities to care varied [48,115] particularly given the lack of alternative options [69,93,117].Parents' readiness for caregiving, which shaped families' ongoing experiences [45, 75,114,137], related to the quality of pre-discharge practices of training and preparation [40,50,60,75,150].In addition to delivering levels of highly skilled, technical nursing care, once the preserve of healthcare professionals [1,7,40,85,121,122,143], parents also had to physically [38,50,65,98,103] and psychologically [38,98,149] adjust to their caring responsibilities and the medicalization of their family home [44,46,69,138,144], and the steady, continued presence of healthcare staff therein [46,60,61,69,111].While daily care such as feeding, dressing changes, bowel washouts, oxygen therapy, urinary catheterization, suction, bathing, and drug administrations were provided in the home setting [3,68,69,85,87,88,141,143], children also traveled to regular appointments in multiple settings, for scheduled and unscheduled care.

Family impact
There was cross-disciplinary agreement that CCNs had significant, dynamic, and contextualized impacts on every aspect of family life.Care relationships are interdependent so the whole family unit is affected [23,30,67,83,103,125,126,133,136,138,144,150], as a now medicalized life revolves around the routines of caregiving [56, 69,80,85,111,144].However, it is noted that there is a paucity of the voice of the child with CCNs, their siblings, and their grandparents [16,18,28,42,45,60,67,69,117,128,137,145].
Parents experienced impact on their coping and empowerment from both subjective and objective pressures, across physical and psychosocial domains, including but not limited to physical health [22,26,30,38,40,45 A growing body of literature on the positive impact of having a child with CCNs included increased family cohesion and sense of community [57, 67,83,143], increased tolerance [103], and enhanced personal growth of family members [140].A small number of articles also noted differences between parents/guardians and professionals' perceptions of quality of life for children with profound disabilities, with parental views generally more positive [56, 97,132].
Increasingly, there is a focus on the impact of having a child with CCNs on the mental health of their parents [9, 26, 57, 74,114,123,126,130].Families from minority groups [10, 93], families with low incomes [115,119], and immigrants [44, 57, 102] were found to be at particularly high risk of adverse health outcomes.

Structural and political impact
This concept analysis on CCNs found multiple structural weaknesses across international healthcare systems [5, 16,20,31,35,42,52,78,90,93,122].Pressure on those systems emerged as a dominant consequence of trying to cope with increasing number of children with CCNs [3,12,26,48,55,69,71,73,77,89,92,94,122,143].This included high resource utilization, hospital admission, and readmission rates [11,33,54,148].CCNs increasingly seem to drive clinical and research agendas, and there was strong cross-disciplinary consensus that increased investment in community supports for integrated services could ameliorate families' care burden [1,16,30,33,40,47,51,54,55,69,72,78,81,94,122,143].Mental health services [37, 69,73,114,115,126] and workforce development, especially staff training and recruitment [16,17,46,61,69,95,133], emerged as in particular need of attention as the preventable nature of many aspects of families' struggles was apparent across all disciplines [55, 71,133,142].Moreover, it was found that systemic failures in providing healthcare had damaged trust in the parent-provider relationships and the quality of care delivery, and risked negative health outcomes for children with CCNs and their families [8,44,73,85,133].This was despite stated political recognition of the need for adequately funded and supported integrated care pathways [126].At a wider level, it was suggested that these failures added pressure on acute services as families struggle to cope in the wake of continued policy failings [39,60,69,72,93,119,142].

Discussion
This concept analysis provides a much-needed theoretical framework for understanding the multidimensional nature of complex care needs in children.We found that children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis.They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by healthcare structure.
The key characteristics of the attributes, antecedents, and consequences are presented in Fig. 2. They are deliberately depicted encompassed by two arrows representing the dynamic and evolving nature of our understanding of CCNs, reflecting the reality that how we come to understand the consequences of CCNs may subsequently impact on our understanding of the attributes and individual, historical, and sociocultural contexts.
Key issues emerging from the concept analysis include questions about access to care, parental readiness to care, and lack of integrated care systems which challenges equity of provision of care.The emergence of these issues supports the ongoing move away from a mono-dimensional system, based on a traditional approach of medical management of children living with CCNs.They highlight the value and need for the contribution of a narrative lens and a constructivist paradigm.
At present, the integration of health services is generally found to be insufficient, with wide variation in the governance of, and access to, care for these children and their families.It is acknowledged that there remain extensive challenges to this.These include communication of the needs of the child and family at the acute-community interface, confusion over points of accessing care, and no defined system of documenting care needs and care delivery in a manner that can be accessible for the family and the multi-disciplinary team when families cross within and between acute and community care services [16,19].The geographical spread of the literature reviewed highlights that the challenges found are shared internationally, with recommendations for the need for a seamless service to avoid over-burden on parents and more effective communication processes to enhance continuity of care [108,140].Adopting appropriate processes is essential for continuity of care, the absence of which can lead to difficulty delivering safe and efficient care.While a number of benchmarks for care of children with complex care needs have been developed to support this [6,110], little is understood about the specific processes and procedures that contribute to the success or failure of such models for this group of children, and it remains difficult to fully implement these standards in the absence of mapped out access to care for this population.
It is evident from this analysis that while some literature focuses on the positives for parents with a child with complex care needs, the majority of published research identifies that they are very burdened by becoming the primary care giver for their child.There is also very limited mention of accountability concerns.Internationally, the governance of care for children with CCNs in the community remains unclear and is compounded by the fragmented nature of health service delivery to this population.In some respects, this feeds in to the repeated findings that the stress of having a child with CCNs may challenge family functioning.Continued research into complex care, its definition, assessment, and impact is needed to understand how children and their families, and health and social care professionals experience and implement treatment that suits the realities of daily life.It is important that this research has a strong multidisciplinary focus where necessary, as the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.
In parallel with progressing a multidisciplinary focus in research, the care and management of children with complex care needs is an ideal arena for the development of interprofessional education programs, which can contribute to providing healthcare professionals with the skills and knowledge needed to work in a collaborative manner [27, 64,147], and improve enhanced health care delivery [101,124], particularly given the complexity of patients' healthcare needs and the range of healthcare providers and organizations involved when a child has CCNs.

Limitations
Given the lack of clarification of the concept of complex care to date, the insights from this review provide a valuable foundation on which to further develop this concept.Nonetheless, this review has limitations that must be considered.CCNs were referred to here in context of the family setting.We acknowledge there are a significant number of children with complex care needs who live outside that setting for many different reasons, such as those in foster care or residential care facilities.These children are particularly vulnerable adverse health and psychological outcomes.Specific characteristics of this group could not be identified due to the paucity of literature on this population.

Conclusion
It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.It is important that research in this area has a strong multidisciplinary focus to enable the breadth and depth of exploration required to understand the optimum care required for these children and their families.

Table 1
, Coding framework based on Rodgers' evolutionary method Reck CA, Vilanova-Sanchez A, Gonzalez DO, Gasior AC, Weaver LJ et al (2017) Does clinic visit education within a multidisciplinary center improve health literacy scores in caregivers of children with complex colorectal conditions?J Pediatr Surg 52(12):1997-2000 42.Duc JK, Herbert AR, Heussler HS (2017) Paediatric palliative care and intellectual disability-a unique context.J Appl Res Intellect Disabil 30:1111-1124 43.Edelstein H, Schippke J, Sheffe S, Kingsnorth S (2017) Children with medical complexity: a scoping review of interventions to support caregiver stress.Child Care Health Dev 43(3):323-333 44.Egilson ST (2011) Parent perspectives of therapy services for their children with physical disabilities.Scand J Caring Sci 25:277-284 45.Elias ER, Murphy NA (2012) Home care of children and youth with complex health care needs and technology dependencies.Pediatrics 129:996-1005 46.Farasat H, Hewitt-Taylor J (2007) Learning to support children with complex and continuing health needs and their families.J Spec Pediatr Nurs 12:72-83 47.Fraser LK, Parslow RC, McKinney PA, Miller M, Aldridge JM, Hain R et al (2012) A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care.Palliat Med 26(7):924-929 48.Friedman SL, Kalichman MA (2014) Out-of-home placement for children and adolescents with disabilities.Pediatrics 134:836-846 49.Garg P, Haynes N, De Lima J, Collins JJ (2017) Profile of children with developmental disabilities attending a complex pain clinic of a children's hospital in Australia.J Paediatr Child Health 53(12): 1186-1191 50.Geere JL, Gona J, Omondi FO, Kifalu MK, Newton CR, Hartley S (2013) Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health.Child Care Health Dev 39:381-392 51.Glader L, Plews-Ogan J, Agrawal R (2016) Children with medical complexity: creating a framework for care based on the International Classification of Functioning, Disability and Health.Dev Med Child Neurol 258:1116-1123 52.Gleeson H, Turner G (2012) Transition to adult services.Arch Dis Child Educ Pract Ed 97:86-92 53.Goddard L, Davidson PM, Daly J, Mackey S (2008) People with an intellectual disability in the discourse of chronic and complex conditions: an invisible group?Aust Health Rev 32:405-414 54.Goldson E, Louch G, Washington K, Scheu H (2006) Guidelines for the care of the child with special health care needs.Adv Pediatr Infect Dis 53:165-182 55.Goudie A, Narcisse MR, Hall DE, Kuo DZ (2014) Financial and psychological stressors associated with caring for children with disability.Fam Syst Health 32:280-290 56.Graham RJ, Robinson WM (2005) Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities.J Dev Behav Pediatr 26:361-365 57.Gravdal Kvarme L, Albertini-Fruh E, Brekke I, Gardsjord R, Halvorsrud L, Liden H (2016) On duty all the time: health and quality of life among immigrant parents caring for a child with complex health needs.J Clin Nurs 25:362-371 58.Green SE (2007) 'We're tired, not sad': benefits and burdens of mothering a child with a disability.Soc Sci Med 64:150-163 59.Heath G, Farre A, Shaw K (2017) Review article: parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents' experiences.Patient Educ Couns 00(1):76-92 60.Hewitt-Taylor J (2005) Caring for children with complex and continuing health needs.Nurs Stand 19:41-47 61.Hewitt-Taylor J, Farasat H (2006) Learning to support children with complex needs in their homes.Br J Community Nurs 11: 209-213