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

European Journal of Pediatrics, Aug 2018

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.

A PDF file should load here. If you do not see its contents the file may be temporarily unavailable at the journal website or you do not have a PDF plug-in installed and enabled in your browser.

Alternatively, you can download the file locally and open with any standalone PDF reader:

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

European Journal of Pediatrics pp 1–12 | Cite as Children’s complex care needs: a systematic concept analysis of multidisciplinary language AuthorsAuthors and affiliations Maria BrennerClaire KidstonCarol HilliardImelda CoyneJessica Eustace-CookCarmel DoyleThelma BegleyMichael J. Barrett Open Access Original Article First Online: 08 August 2018 Received: 22 May 2018 Revised: 02 July 2018 Accepted: 16 July 2018 Abstract 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. KeywordsChild Complex care Concept analysis Family Multidisciplinary  Abbreviations CCN Complex care needs Communicated by Piet Leroy 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 “entails 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). Open image in new window Fig. 1 Data search and selection process 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 “Which factors (antecedents) are proposed to precede CCNs?” and “What 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. Table 1 Coding framework based on Rodgers’ evolutionary method Number Question 1. What are the key attributes of the concept? 2. Which factors (antecedents) are proposed to precede treatment burden? 3. What are the consequences of treatment 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). Results 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. Heterogeneous and substantial The multidimensional care required to manage multiple condition-related needs [12, 15, 19, 23, 25, 35, 42, 44, 46, 51, 61, 76, 82, 86, 96, 99, 107, 122, 123, 125, 128, 131, 133, 145, 150], in the context of developmental, social, and psychological needs, emerged as a key feature of children’s CCNs [46, 54, 61, 63, 71, 149]. Heterogeneous combinations of high-intensity needs [25, 33, 40, 42, 45, 51, 54, 76, 79, 96, 98, 99, 103, 128, 131, 145] spanned a wide range of care, including nutritional [1, 10, 11, 21, 25, 32, 69, 76, 82, 85, 87, 136], respiratory [10, 11, 25, 69, 76, 90, 114], personal care and hygiene [25, 76, 79, 82, 85], toileting [25, 79, 85], sensory [5, 45, 62, 97, 132], technological [1, 3, 11, 16, 25, 33, 42, 82, 121, 128, 131, 136, 137], pharmacological [15, 25, 33, 35, 42, 49, 76, 96, 131], emotional [23, 37, 62, 107, 131], and palliative care needs [17, 42, 56, 66, 95, 119, 120, 131, 141]. Children with CCNs frequently required constant vigilance and monitoring [7, 23, 57, 80, 84, 87, 88, 131, 141]. Needs were present at all times across the acute-community care interface in a range of settings: home [3, 15, 25, 46, 57, 60, 61, 69, 83, 84, 87, 102, 133, 143, 145], school [4, 13, 21, 42, 62, 69, 94, 105], recreational [21, 62, 142, 144], community [15, 20, 22, 25, 31, 67, 68, 88, 131, 142, 144], and travel [82, 87, 120, 142]. The attribute geographical location of home care frequently emerged in the literature [4, 16, 17, 34, 50, 57, 65, 95, 113, 119, 120, 133] and was found to influence the type and intensity of care needs [12, 20, 77, 136, 142]. Estimates of the real time involved in caring for children with CCNs varied from 4 to 5 h per day [114] to 24-h nursing care [35, 76, 111, 114, 131] in the literature reviewed. However, it was also apparent that medical and nursing data alone could not provide an accurate sense of the time involved in meeting children’s CCNs, given their frequent extension beyond the purely medical [14, 19, 29, 46, 133]. Individual and contextualized The concept analysis found cross-disciplinary agreement on the highly individual and unique nature of CCNs, which also emerged as inseparable from the family context. The individuality of the child and family was apparent in the broad recognition that diagnosis alone could not reflect the realities of complexity [12, 111]. Unpredictability in care trajectories was influenced by characteristics of the child including age [18, 62, 107, 117, 131], developmental stage [62, 80, 85, 88, 107], and medical status and stability [14, 22, 44, 68, 83, 86, 88, 132, 141]. Additionally, children with CCNs were presented as having unique family contexts that gave their needs individual meaning [3, 7, 12, 16, 17, 25, 44, 56, 68, 98, 145, 149]. The analysis revealed subtle differences in disciplinary focus; medical research tended to examine the wide variations in condition severity [13, 14, 33, 39, 40, 48, 50, 52, 73, 104, 114] while the importance of family context generally received greater attention within the nursing and social literature [3, 16, 18, 20, 22, 23, 25, 29, 60, 61, 68, 76, 77, 83, 85, 113, 117, 122, 131, 149, 150]. Continuing and dynamic Children’s CCNs were characterized as having a constantly changing nature, due to the potential for deterioration and improvement (intermittent or prolonged) and advances or challenges in care provision [14, 23, 34, 39, 44, 46, 60, 65, 67, 73, 88, 99, 102, 103, 104, 117, 133, 141] emerging through the ongoing care adjustments required during the physical and psychological development of a child [42, 69, 82, 83, 85, 132, 133, 150]. As developmental milestones were missed [80, 143], increased physical and technical care was often necessary [7, 14, 48, 51, 54, 56, 71, 78, 80, 85, 88, 106, 112, 141, 142, 148, 150]. There was cross-disciplinary recognition of these increased CCNs through multiple transition points, as children and families adjusted to changing services and care plans during transitions from hospital to home [15, 16, 19, 20, 35, 45, 52, 75, 76, 96, 111], children’s to adult services [14, 19, 28, 31, 59, 71, 78, 112], and/or from curative to palliative care [42, 56, 66, 95, 131]. 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. The diversity in the stability and severity of the child’s underlying medical conditions emerged as a significant influencing factor on CCNs [5, 12, 33, 40, 60, 92, 97, 127, 129, 132, 133]. Some of the literature focused on complex needs associated with specific illnesses or conditions, including heart failure [86], cerebral palsy [14, 98, 148], spina bifida [79], Russell-Silver syndrome [136], tracheotomy [10], Apert syndrome [62], complex pain [49, 67], Prader-Willi syndrome [83], tuberous sclerosis [104], complex epilepsy [38], and complex colorectal conditions [41]. A number of articles discussed CCNs by diagnostic groupings of children, including children with disabilities [3, 23, 44, 48, 55, 58, 65, 71, 103, 125, 137, 138, 139, 150], chronic conditions [10, 81, 102], life-limiting conditions [24, 95, 119, 133, 138], technology dependence [3, 11, 12, 33, 35, 37, 40, 51, 69, 73, 114, 115, 118, 121], solid organ transplant [57, 76], neurodevelopmental disabilities [56, 149], severe congenital malformations [18], rare diseases [92], chronic neuromotor disability [106], intellectual disabilities [53], and general pediatric neurologic disorders [130]. In much of the literature reviewed, CCNs were presented as crossing traditional diagnostic boundaries, which prompted the call for the need for clearer definitions of CCNs and the need for more accurate prevalence data [121] to avoid the risk of oversimplification of children’s needs [2]. Moreover, such systems posed further difficulties for the unknown population of children lacking a unifying diagnosis, whose uncertain medical status already represented a barrier to service access that emerged as a growing cross-discipline concern [5, 11, 45, 67, 92, 130, 133, 138]. The individual family context for all CCNs emerged as similarly diverse and equally significant. Multiple personal and environmental factors interacted in ways that were difficult to quantify, shaping not just families’ care preferences [25, 28, 30, 42, 131, 145] and perceptions of support needs [133], but also health outcomes [65] and the experience of living with a child with CCNs [48, 66, 114]. Cross-disciplinary recognition of the importance of family preferences and culture has grown over time [1, 7, 19, 20, 30, 40, 45, 46, 60, 61, 68, 69, 77, 87, 92, 95, 103, 141, 149]. In particular, this pertains to issues of race [10, 55, 65, 91], ethnicity [4, 10, 57, 73, 74, 80, 102], geographical location [4, 16, 20, 34, 50, 95, 119, 150], language [4, 16, 18, 28, 39, 41, 48, 57, 87, 150], and culture [1, 4, 21, 39, 44, 46, 54, 57, 66, 102, 136]. The context of the family found in the literature pertained to the socio-economic status of the family [3, 4, 7, 18, 48, 66, 102, 103, 119, 150] and included reference to employment [80, 91], legal [57, 102], insurance [35, 73, 102], and health status [50, 65], as well as families’ structures [18, 65, 117, 150], strengths [18, 30, 139, 142, 150], support systems [29, 66, 82, 107, 117, 119, 150], beliefs [1, 66, 114, 119, 138], values [1, 46, 66], expectations [28, 99, 139], cohesion [7], and capacity for coping [7, 18, 20, 29, 48, 74, 75, 76, 102, 103, 107, 133, 139]. It was apparent that family context influenced the medium for care delivery and the opportunities for children with CCNs to live meaningful lives [68]. Medical advances Within the last 30 years, coinciding with changing sociocultural attitudes towards social inclusion [1, 7, 21, 44, 48, 53, 71, 114, 126], western medical, technological, and pharmaceutical advances have clearly increased the survival and lifespan of children living with once-fatal conditions [33, 114]. Nonetheless, it was apparent from the medical [1, 2, 10, 40, 45, 48, 51, 54, 56, 66, 73, 79, 89, 103, 115] and nursing literature [3, 4, 21, 43, 68, 69, 80, 93, 121, 143] that those advances had also led to a growing pediatric population living with secondary conditions and/or disabilities with CCNs. Further, there was strong cross-disciplinary consensus that social and community service developments had not kept pace with medical progress [19, 54, 60, 69, 96, 99, 107, 131, 137, 143]. This shortfall included training and workforce development for healthcare professionals whose job descriptions had rapidly evolved in a climate of advancement and cost containment [4, 8, 17, 46, 61, 95, 149]. The nursing literature in particular also highlighted the concurrent international shift towards deinstitutionalization of children with CCNs [4, 7, 44, 53, 60, 61, 69, 80, 84, 85, 93, 142, 143, 144]. Broad acceptance of an increasingly holistic ontology [7, 34, 44, 46] shaped a changed cultural understanding of the acute hospital setting as inappropriate for meeting children’s developmental needs in the long term [57, 60, 61, 65, 111], and an acceptance that, where possible [48, 54, 115], families should remain together [39, 69, 77, 93]. The growing number of children who are technology dependent strengthened international resolve for providing comprehensive care within the home setting [14, 19, 22, 23, 34, 35, 39, 40, 44, 45, 48, 60, 61, 73, 93, 126]. This more family-oriented shift also represented valuable cost efficiencies within existing healthcare systems [61, 85, 125, 142]. Existing healthcare systems The international lack of integrated care systems emerged as a significant barrier to competent, comprehensive care delivery for children’s CCNs across all disciplines in the literature reviewed. It was apparent that the existing provision of care at home was considered unsustainable [93], frequently due to structural factors relating to funding and resources that were deemed inadequate to meet the needs of a growing population [4, 5, 8, 22, 33, 34, 39, 40, 44, 45, 46, 60, 67, 69, 71, 77, 78, 82, 86, 88, 89, 93, 95, 100, 111, 114, 116, 122, 136, 137]. Throughout our review, community service provision emerged as fragmented and inconsistent, fluctuating with the child’s geographical location [14, 19, 21, 22, 34, 43, 45, 46, 53, 65, 69, 71, 72, 92, 93, 95, 96, 102, 103, 111, 114, 123, 142]. The quality of interagency collaboration, planning, and coordination also frequently emerged as inadequate [5, 30, 46, 72, 90, 95, 122] and in need of systems-level reform [16, 22, 40, 55, 79] to provide healthcare professionals with the necessary flexibility [46, 122, 149], resources [22, 46, 57, 60, 61, 71, 127, 149], and remuneration [116, 122] to support improvements. While these issues have recently received more attention [34, 39, 51, 75, 90, 129], concerns regarding the lack of a skilled workforce persist [45, 46, 60, 61, 149]. Carer competence, knowledge, and experience were frequently queried [45, 95, 111, 136, 141] in the midst of repeated calls for regulation and oversight on the training of home healthcare staff [16, 45, 52, 72, 119]. Common sources of unnecessary confusion and concern related to the lack of consensus on essential qualifications for children’s nursing [4, 16, 17, 45, 90], poorly articulated roles [5, 17, 72, 122], and the need for a shared vision of inter-agency multidisciplinary working [2, 22, 44, 122]. Furthermore, in light of the need for greater evidence-based decisions pertaining to CCNs [2, 106], practitioners’ personal and professional biases [11, 56, 66, 114] emerged, alongside hospital ethos [66], cultures [44, 46, 104], and prevailing institutional care practices [9, 10, 11, 79] as exerting influence over care decisions. 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. It has become clearer over time that the heterogeneity of needs required a more coordinated multidisciplinary team approach to individualized care delivery [19, 51]. Healthcare teams are evolving to include multiple healthcare professionals, specialists, and community providers whose diverse skills reflect the complexity of needs of the child and their family [1, 4, 11, 17, 21, 22, 23, 30, 31, 34, 37, 39, 40, 44, 45, 51, 52, 60, 61, 67, 68, 72, 77, 78, 79, 90, 94, 95, 97, 103, 111, 116, 117, 122, 141, 150]. This clearly identifies that children’s CCNs preclude the possibility that any one professional or discipline can possess the requisite knowledge for high-quality, comprehensive care [54, 68, 90]. However, the associated organizational burden still frequently falls on parents [22, 40, 138], despite policy commitments to provide families with designated care coordinators [22, 30, 39, 100, 111, 137]. Moreover, families’ efforts to secure services were often described as time-consuming, complicated, and stressful [138, 139]. 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, 50, 60, 67, 85, 93, 103, 114, 133, 138, 142], financial [40, 48, 54, 55, 83, 103, 115, 129], employment [3, 60, 71, 77, 91, 135, 136, 142, 150], time [23, 44, 58, 60, 103, 129, 133, 136, 142], mental health [3, 13, 22, 29, 40, 45, 50, 51, 54, 55, 58, 60, 68, 69, 72, 80, 83, 103, 117, 126, 127, 129, 133, 136, 140, 141, 142, 150], social isolation [26, 83], identity [56, 60, 80, 136, 143, 144], dependency [67, 93, 136], and parenting in public [46, 61, 69, 111]. 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]. However, it was found that parents/guardians typically subjugated their own needs for their child’s needs [53, 54, 93], often leading to unmet psychosocial, financial, and physical needs of the parents [5, 26, 65, 104, 106, 138], due to the unrelenting intensity of caregiving [84, 88, 93], especially in the absence of adequate respite care [22, 84, 85, 119, 137, 150]. 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. Open image in new window Fig. 2 Attributes, antecedents, and consequences of CCNs 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 inter-professional 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 to 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. Notes Authors’ contributions All authors: made a substantial contribution to conception and design, acquisition of data, or analysis and interpretation of data; were involved in drafting the article or revising it critically for important intellectual content; approved the final version to be published; and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Compliance with ethical standards Conflict of interest The authors declare that they have no conflict of interest. Ethical approval This article does not contain any studies with human participants or animals performed by any of the authors. References 1. Adams RC, Elias ER (2014) Nonoral feeding for children and youth with developmental or acquired disabilities. Pediatrics 134:e1745–e1762PubMedCrossRefGoogle Scholar 2. Agrawal R (2015) Complex care in pediatrics: great progress, greater challenges. J Pediatr Rehabil Med 8:71–74PubMedCrossRefGoogle Scholar 3. Alexander E, Rennick JE, Carnevale F, Davis M (2002) Daily struggles: living with long-term childhood technology dependence. Can J Nurs Res 34:7–14PubMedGoogle Scholar 4. Anderson LS (2013) The development and implementation of eSchoolCare: a novel health care support system for school nurses. ANS Adv Nurs Sci 36:289–303PubMedCrossRefGoogle Scholar 5. Archbold S, Athalye S, Mulla I, Harrigan S, Wolters-Leermakers N, Isarin J, Knoors H (2015) Cochlear implantation in children with complex needs: the perceptions of professionals at cochlear implant centres. Cochlear Implants Int 16:303–311PubMedCrossRefGoogle Scholar 6. Association of Maternal and Child Health Progams (2017) Standards for systems of care for children and youth with special health care needs. Association of Maternal and Child Health Programs, WashingtonGoogle Scholar 7. Baider L (2011) Unsteady balance: the constraints of informal care. J Pediatr Hematol Oncol 33(Suppl 2):S108–S111PubMedCrossRefGoogle Scholar 8. Baird J, Rehm RS, Hinds PS, Baggott C, Davies B (2016) Do you know my child? Continuity of nursing care in the pediatric intensive care unit. Nurs Res 65:142–150PubMedPubMedCentralCrossRefGoogle Scholar 9. Beck JC (2014) Improving pediatric hematology/oncology care in the emergency department. J Oncol Pract 10:e26–e28PubMedCrossRefGoogle Scholar 10. Berry JG, Bloom S, Foley S, Palfrey JS (2010) Health inequity in children and youth with chronic health conditions. Pediatrics 126(Suppl 3):S111–S119PubMedCrossRefGoogle Scholar 11. Berry JG, Agrawal R, Kuo DZ, Cohen E, Risko W, Hall M, Casey P, Gordon J, Srivastava R (2011) Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr 159:284–290PubMedPubMedCentralCrossRefGoogle Scholar 12. Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C (2015) Ways to identify children with medical complexity and the importance of why. J Pediatr 67:229–237CrossRefGoogle Scholar 13. Bethell C, Forrest C, Stumbo S, Gombojav N, Carle A, Irwin C (2012) Factors promoting or potentially impeding school success: disparities and state variations for children with special health care needs. Matern Child Health J 16:35–43CrossRefGoogle Scholar 14. Bjorquist E, Nordmark E, Hallstrom I (2015) Living in transition—experiences of health and well-being and the needs of adolescents with cerebral palsy. Child Care Health Dev 41:258–265PubMedCrossRefGoogle Scholar 15. Breneol S, Belliveau J, Cassidy C, Curran JA (2017) Strategies to support transitions from hospital to home for children with medical complexity: a scoping review. Int J Nurs Stud 72:91–104PubMedCrossRefGoogle Scholar 16. Brenner M, Larkin P, Hilliard C, Cawley D, Howlin F, Connolly M (2015) Parents’ perspectives of the transition to home when a child has complex technological health care needs. Int J Integr Care 15:e035PubMedPubMedCentralCrossRefGoogle Scholar 17. Brenner M, Connolly M, Cawley D, Howlin F, Berry J, Quinn C (2016) Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study. BMC Palliat Care 15:89PubMedPubMedCentralCrossRefGoogle Scholar 18. Brenner M, Cote S, Boivin M, Tremblay R (2016) Severe congenital malformations, family functioning and parents’ separation/divorce: a longitudinal study. Child Care Health Dev 42(1):16–24PubMedCrossRefGoogle Scholar 19. Brenner M, O'Shea M, Larkin P, Kamionka S, Berry J, Hiscock H et al (2017) Exploring integration of care for children living with complex care needs across the European Union and European economic area. Int J Integr Care 17(2):1PubMedPubMedCentralGoogle Scholar 20. Brenner M, Connolly M, Larkin P, Hilliard C, Howlin F, Cawley D (2017) Adaptation of a voice-centered relational framework to explore the perspective of parents who have transitioned to home with a child with complex care needs. Compr Child Adolesc Nurs 40(4):285–293PubMedCrossRefGoogle Scholar 21. Brett J (2007) Complex needs: improving access to out-of-school activities. Paediatr Nurs 9:36–39Google Scholar 22. Brooks F, Bloomfield L, Offredy M, Shaughnessy P (2013) Evaluation of services for children with complex needs: mapping service provision in one NHS Trust. Prim Health Care Res Dev 14:52–62PubMedCrossRefGoogle Scholar 23. Brust JD, Leonard BJ, Sielaff BH (1992) Maternal time and the care of disabled children. Public Health Nurs 9:177–184PubMedCrossRefGoogle Scholar 24. Cadell S, Hemsworth D, Smit Quosai T, Steele R, Davies E, Liben S et al (2014) Posttraumatic growth in parents caring for a child with a life-limiting illness: a structural equation model. Am J Orthop 84:123–133CrossRefGoogle Scholar 25. Cady RG (2017) Care mapping for the medically complex child. Dev Med Child Neurol 59(12):1216–1217PubMedCrossRefGoogle Scholar 26. Caicedo C (2014) Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc 20:398–407PubMedCrossRefGoogle Scholar 27. Canadian Interprofessional Health Collaboration (2010) A national interprofessional competency framework, Canadian Interprofessional Health, Vancouver, Canada. Accessed 1st July 2018 28. Carnevale FA, Teachman G, Bogossian A (2017) A relational ethics framework for advancing practice with children with complex health care needs and their parents. Compr Child Adolesc Nurs 40(4):268–284CrossRefGoogle Scholar 29. Carter B, Bray L (2017) Parenting a child with complex health care needs: a stressful and imposed “clinical career”. Compr Child Adolesc Nurs 40(4):219–222PubMedCrossRefGoogle Scholar 30. Carter B, Cummings J, Cooper L (2007) An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? J Clin Nurs 16:527–539PubMedCrossRefGoogle Scholar 31. Ciccarelli MR, Gladstone EB, Armstrong Richardson EAJ (2015) Implementation of a transdisciplinary team for the transition support of medically and socially complex youth. J Pediatr Nurs 30:661–667PubMedCrossRefGoogle Scholar 32. Coad J, Toft A, Lapwood S, Manning J, Hunter M, Jenkins H, Sadlier C, Hammonds J, Kennedy A, Murch S, Widdas D (2017) Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence. Arch Dis Child 102:274–278PubMedCrossRefGoogle Scholar 33. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, Srivastava R (2011) Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 127:529–538PubMedPubMedCentralCrossRefGoogle Scholar 34. Cohen E, Lacombe-Duncan A, Spalding K, Macinnis J, Nicholas D, Narayanan UG et al (2012) Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res 12:366–366PubMedPubMedCentralCrossRefGoogle Scholar 35. Coller RJ, Nelson BB, Klitzner TS, Saenz AA, Shekelle PG, Lerner CF, Chung PJ (2017) Strategies to reduce hospitalizations of children with medical complexity through complex care: expert perspectives. Acad Pediatr 17:381–388PubMedCrossRefGoogle Scholar 36. Com G, Kuo DZ, Bauer ML, Lenker CV, Melguizo-Castro MM, Nick TG, Makris CM (2013) Outcomes of children treated with tracheostomy and positive-pressure ventilation at home. Clin Pediatr 52(1):54–61CrossRefGoogle Scholar 37. Coquillette M, Cox JE, Cheek S, Webster RA (2015) Social work services utilization by children with medical complexity. Matern Child Health J 19:2707–2713PubMedCrossRefGoogle Scholar 38. Cottrell L, Khan A (2005) Impact of childhood epilepsy on maternal sleep and socioemotional functioning. Clin Pediatr (Phila) 44:613–616CrossRefGoogle Scholar 39. Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee (2014) Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics 133(5)Google Scholar 40. Dewan T, Cohen E (2013) Children with medical complexity in Canada. Paediatr Child Health 18:518–522PubMedPubMedCentralCrossRefGoogle Scholar 41. Dingemans AJM, 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):1997–2000PubMedCrossRefGoogle Scholar 42. Duc JK, Herbert AR, Heussler HS (2017) Paediatric palliative care and intellectual disability—a unique context. J Appl Res Intellect Disabil 30:1111–1124PubMedCrossRefGoogle Scholar 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):323–333PubMedCrossRefGoogle Scholar 44. Egilson ST (2011) Parent perspectives of therapy services for their children with physical disabilities. Scand J Caring Sci 25:277–284PubMedCrossRefGoogle Scholar 45. Elias ER, Murphy NA (2012) Home care of children and youth with complex health care needs and technology dependencies. Pediatrics 129:996–1005PubMedCrossRefGoogle Scholar 46. Farasat H, Hewitt-Taylor J (2007) Learning to support children with complex and continuing health needs and their families. J Spec Pediatr Nurs 12:72–83PubMedCrossRefGoogle Scholar 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):924–929PubMedCrossRefGoogle Scholar 48. Friedman SL, Kalichman MA (2014) Out-of-home placement for children and adolescents with disabilities. Pediatrics 134:836–846PubMedCrossRefGoogle Scholar 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):1186–1191PubMedCrossRefGoogle Scholar 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 39:381–392PubMedPubMedCentralCrossRefGoogle Scholar 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 258:1116–1123CrossRefGoogle Scholar 52. Gleeson H, Turner G (2012) Transition to adult services. Arch Dis Child Educ Pract Ed 97:86–92PubMedCrossRefGoogle Scholar 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 32:405–414PubMedCrossRefGoogle Scholar 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 53:165–182Google Scholar 55. Goudie A, Narcisse MR, Hall DE, Kuo DZ (2014) Financial and psychological stressors associated with caring for children with disability. Fam Syst Health 32:280–290PubMedPubMedCentralCrossRefGoogle Scholar 56. Graham RJ, Robinson WM (2005) Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr 26:361–365PubMedCrossRefGoogle Scholar 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 25:362–371PubMedCrossRefGoogle Scholar 58. Green SE (2007) ‘We’re tired, not sad’: benefits and burdens of mothering a child with a disability. Soc Sci Med 64:150–163PubMedCrossRefGoogle Scholar 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):76–92CrossRefGoogle Scholar 60. Hewitt-Taylor J (2005) Caring for children with complex and continuing health needs. Nurs Stand 19:41–47CrossRefGoogle Scholar 61. Hewitt-Taylor J, Farasat H (2006) Learning to support children with complex needs in their homes. Br J Community Nurs 11:209–213PubMedCrossRefGoogle Scholar 62. Hilton C (2017) An exploration of the cognitive, physical and psychosocial development of children with Apert syndrome. IJDDE 64:198–210Google Scholar 63. Howard L, Hunt K, Slade M, O'Keane V, Senevirante T, Leese M, Thornicroft G (2007) Assessing the needs of pregnant women and mothers with severe mental illness: the psychometric properties of the Camberwell Assessment of Need - Mothers (CAN-M). Int J Methods Psychiatr Res 16:177–185PubMedCrossRefGoogle Scholar 64. Interprofessional Education Collaborative Expert Panel (2011) Core competencies for interprofessional collaborative practice: report of an expert panel. Interprofessional Education Collaborative Washington, US. Accessed 1st July 2018 65. Isa SN, Aziz AA, Rahman AA, Ibrahim MI, Ibrahim WP, Mohamad N et al (2013) The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors. J Dev Behav Pediatr 34:262–268PubMedCrossRefGoogle Scholar 66. Janvier A, Barrington K, Farlow B (2014) Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol 38:38–46PubMedCrossRefGoogle Scholar 67. Jordan AL, Eccleston C, Osborn M (2007) Being a parent of the adolescent with complex chronic pain: an interpretative phenomenological analysis. Eur J Pain 11:49–56PubMedCrossRefGoogle Scholar 68. Juhlman AF (2010) Take the little steps: providing complex care. Pediatr Ann 39:248–253CrossRefGoogle Scholar 69. Kirk S, Glendinning C (2004) Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev 30:209–218PubMedCrossRefGoogle Scholar 70. Knafl KA, Deatrick JA (1986) How families manage chronic conditions: an analysis of the concept of normalization. Res Nurs Health 9(3):215–222PubMedCrossRefGoogle Scholar 71. Knapp M, Perkins M, Beecham J, Dhanasiri S, Rustin C (2008) Transition pathways for young people with complex disabilities: exploring the economic consequences. Child Care Health Dev 34:512–520PubMedCrossRefGoogle Scholar 72. Kruger BJ, Toker KH, Radjenovic D, Comeaux JM, Macha K (2009) School nursing for children with special needs: does number of schools make a difference? J Sch Health 79:337–346PubMedCrossRefGoogle Scholar 73. Kuo DZ, Melguizo-Castro M, Goudie A, Nick TG, Robbins JM, Casey PH (2015) Variation in child health care utilization by medical complexity. Matern Child Health J 19:40–48PubMedPubMedCentralCrossRefGoogle Scholar 74. Kvarme LG, Früh EA, Lidèn H (2017) How do immigrant parents of children with complex health needs manage to cope in their daily lives? Child Fam Soc Work 22(4):1399–1406CrossRefGoogle Scholar 75. Lerret SM, Weiss ME, Stendahl GL, Chapman S, Menendez J, Williams L, Nadler ML, Neighbors K, Amsden K, Cao Y, Nugent M, Alonso EM, Simpson P (2015) Pediatric solid organ transplant recipients: transition to home and chronic illness care. Pediatr Transplant 19:118–129PubMedCrossRefGoogle Scholar 76. Lerret SM, Johnson NL, Haglund KA (2017) Parents’ perspectives on caring for children after solid organ transplant. J Spec Pediatr Nurs 22:1–8CrossRefGoogle Scholar 77. Lindeke LL, Leonard BJ, Presler B, Garwick A (2002) Family-centered care coordination for children with special needs across multiple settings. J Pediatr Health Care 16:290–297PubMedCrossRefGoogle Scholar 78. Lindsay S, Hoffman A (2015) A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences. Child Care Health Dev 41:397–407PubMedCrossRefGoogle Scholar 79. Liptak GS, El Samra A (2010) Optimizing health care for children with spina bifida. Dev Disabil Res Rev 16:66–75PubMedCrossRefGoogle Scholar 80. MacDonald HL, Gibson CH (2010) Parenting children requiring complex care at home: re-visiting normalisation and stigma. J Nurs Healthc Chronic Illn 2:241–250CrossRefGoogle Scholar 81. Mahat G, Scoloveno MA, Donnelly CB (2007) Written educational materials for families of chronically ill children. J Am Acad Nurse Pract 19:471–476PubMedCrossRefGoogle Scholar 82. Mandic CG, Johaningsmeir S, Corden TE, Earle A, Acevedo-Garcia D, Gordon JB (2017) Impact of caring for children with medical complexity on parents’ employment and time. Community Work Fam 20(4):444–458CrossRefGoogle Scholar 83. Mazaheri MM, Rae-Seebach RD, Preston HE, Schmidt M, Kountz-Edwards S, Field N, Cassidy S, Packman W (2013) The impact of Prader-Willi syndrome on the family’s quality of life and caregiving, and the unaffected siblings’ psychosocial adjustment. J Intellect Disabil Res 57:861–873PubMedCrossRefGoogle Scholar 84. McCann D (2015) Does continuous partial attention offer a new understanding of the required vigilance and associated stress for parents of children with complex needs? Child Care Health Dev 41:1238–1241PubMedCrossRefGoogle Scholar 85. McDonald RL, Surtees R, Wirz S (2007) A comparative exploration of the thoughts of parents and therapists regarding seating equipment for children with multiple and complex needs. Disabil Rehabil Assist Technol 2:319–325PubMedCrossRefGoogle Scholar 86. Nandi D, Rossano J, Wang Y, Jerrell J (2017) Risk factors for heart failure and its costs among children with complex congenital heart disease in a Medicaid cohort. Pediatr Cardiol 38(8):1672–1679PubMedCrossRefGoogle Scholar 87. Nicholl H (2015) ‘Going between worlds’: travelling with children with complex needs. J Child Health Care 19:293–303PubMedCrossRefGoogle Scholar 88. Nicholl HM, Begley CM (2012) Explicating caregiving by mothers of children with complex needs in Ireland: a phenomenological study. J Pediatr Nurs 27:642–651PubMedCrossRefGoogle Scholar 89. Noritz G (2016) Once again, complex care leads the way. J Pediatr Rehabil Med 9:3–4PubMedCrossRefGoogle Scholar 90. Nzirawa T (2015) Caring for children with complex needs. Nurs Manag UK 22:32–38CrossRefGoogle Scholar 91. Okumura MJ, Van Cleave J, Gnanasekaran S, Houtrow A (2009) Understanding factors associated with work loss for families caring for CSHCN. Pediatrics 124(Suppl 4):S392–S398PubMedCrossRefGoogle Scholar 92. Pelentsov LJ, Laws TA, Esterman AJ (2015) The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil Health J 8:475–491PubMedCrossRefGoogle Scholar 93. Peter E, Spalding K, Kenny N, Conrad P, Mckeever P, Macfarlane A (2007) Neither seen nor heard: children and homecare policy in Canada. Soc Sci Med 64:1624–1635PubMedCrossRefGoogle Scholar 94. Potera C (2014) A collaborative effort connects Delaware health system with local school nurses. Am J Nurs 114:17PubMedGoogle Scholar 95. Quinn C, Bailey ME (2011) Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. Int J Palliat Nurs 17:561–567PubMedCrossRefGoogle Scholar 96. Rafferty KA, Sullivan SL (2017) ‘You know the medicine, I know my kid’: how parents advocate for their children living with complex chronic conditions. Health Commun 32(9):1151–1160PubMedCrossRefGoogle Scholar 97. Rafferty A, Martin J, Strachan D, Raine C (2013) Cochlear implantation in children with complex needs—outcomes. Cochlear Implants Int 14:61–66PubMedCrossRefGoogle Scholar 98. Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E (2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115:e626–e636PubMedCrossRefGoogle Scholar 99. Ranade-Kharkar P, Weir C, Norlin C, Collins SA, Scarton LA, Baker GB, Borbolla D, Taliercio V, del Fiol G (2017) Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN). J Am Med Inform Assoc 24:933–941PubMedCrossRefGoogle Scholar 100. Randall DC (2017) Two futures: financial and practical realities for parents of living with a life limited child. Compr Child Adolesc Nurs 40:257–267PubMedCrossRefGoogle Scholar 101. Reeves S, Perrier L, Goldman J, Freeth D, Zwarenstein M (2013) Interprofessional education: effects on professional practice and health care outcomes (update). Cochrane Database Syst Rev 28(3):CD002213Google Scholar 102. Rehm RS (2003) Legal, financial, and ethical ambiguities for Mexican American families: caring for children with chronic conditions. Qual Health Res 13:689–702PubMedCrossRefGoogle Scholar 103. Reichman NE, Corman H, Noonan K (2008) Impact of child disability on the family. Matern Child Health J 12:679–683PubMedCrossRefGoogle Scholar 104. Rentz AM, Skalicky AM, Pashos CL, Liu Z, Magestro M, Pelletier CL et al (2015) Caring for children with tuberous sclerosis complex: what is the physical and mental health impact on caregivers? J Child Neurol 30:1574–1581PubMedCrossRefGoogle Scholar 105. Reuben CA, Pastor PN (2013) The effect of special health care needs and health status on school functioning. Disabil Health J 6:325–332PubMedCrossRefGoogle Scholar 106. Ricci MF, Andersen JC, Joffe AR, Watt MJ, Moez EK, Dinu IA, Garcia Guerra G, Ross DB, Rebeyka IM, Robertson CMT (2015) Chronic neuromotor disability after complex cardiac surgery in early life. Pediatrics 136:e922–e933PubMedCrossRefGoogle Scholar 107. Rienks S, Phillips J, McCrae J, Bender K, Brown S (2017) Complex health concerns among child welfare populations and the benefit of pediatric medical homes. Child Abuse Negl 65:212–225PubMedCrossRefGoogle Scholar 108. Robert R, Zhukovsky DS, Mauricio R et al (2012) Bereaved parents’ perspectives on pediatric palliative care. J Soc Work End Life Palliat Care 8:316–338PubMedCrossRefGoogle Scholar 109. Rodgers BL (ed) (2000) Concept analysis: an evolutionary view. Saunders, PhiladelphiaGoogle Scholar 110. Royal College of Paediatrics and Child Health (2015) Standards for children and young people in emergency care settings: children and young people with complex medical needs. In: Royal College of Paediatrics and Child Health. RCPCH, LondonGoogle Scholar 111. Samwell B (2012) From hospital to home: journey of a child with complex care needs. Nurs Child Young People 24:14–19PubMedCrossRefGoogle Scholar 112. Scal P, Ireland M (2005) Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115:1607–1612PubMedCrossRefGoogle Scholar 113. Schwab S, Pierce PM (1986) Assessment of clinical nursing practice in a rural decentralized case-management system. Public Health Nurs 3:111–119PubMedCrossRefGoogle Scholar 114. Seear M, Kapur A, Wensley D, Morrison K, Behroozi A (2016) The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study. Arch Dis Child 101:620–627PubMedCrossRefGoogle Scholar 115. Seltzer RR, Henderson CM, Boss RD (2016) Medical foster care: what happens when children with medical complexity cannot be cared for by their families? Pediatr Res 79(1–2):191–196PubMedCrossRefGoogle Scholar 116. Shulman ST (2010) Complex care is complicated! Pediatr Ann 39:183–184PubMedCrossRefGoogle Scholar 117. Sieben-Hein D, Steinmiller EA (2005) Working with complex care patients. J Pediatr Nurs 20:389–395PubMedCrossRefGoogle Scholar 118. Simon TD, Cawthon ML, Stanford S, Popalisky J, Lyons D, Woodcox P, Hood M, Chen AY, Mangione-Smith R, for the Center of Excellence on Quality of Care Measures for Children with Complex Needs (COE4CCN) Medical Complexity Working Group (2014) Pediatric medical complexity algorithm: a new method to stratify children by medical complexity. Pediatrics 133:e1647–e1654PubMedPubMedCentralCrossRefGoogle Scholar 119. Smith BB, Barbara DW, Hyder JA, Smith MM (2016) Anesthetic considerations for patients with Bardet-Biedl syndrome: a case series and review of the literature. Paediatr Anaesth 26:429–437PubMedCrossRefGoogle Scholar 120. Smith CH, Graham CA, Herbert AR (2017) Respite needs of families receiving palliative care. J Paediatr Child Health 53:173–179PubMedCrossRefGoogle Scholar 121. Spratling R (2015) Defining technology dependence in children and adolescents. West J Nurs Res 37:634–651PubMedCrossRefGoogle Scholar 122. Stans SE, Stevens JA, Beurskens AJ (2013) Interprofessional practice in primary care: development of a tailored process model. J Multidiscip Healthc 6:139–147PubMedPubMedCentralCrossRefGoogle Scholar 123. Stephenson E, DeLongis A, Steele R, Cadell S, Andrews GS, Siden H (2017) Siblings of children with a complex chronic health condition: maternal posttraumatic growth as a predictor of changes in child behavior problems. J Pediatr Psychol 42(1):104–113PubMedGoogle Scholar 124. Suter E, Deutschlander S, Mickelson G et al (2012) Can interprofessional collaboration provide health human resources solutions? A knowledge synthesis. J Interprof Care 26(4):261–268PubMedCrossRefGoogle Scholar 125. Thomas M, Hunt A, Hurley M, Robertson S, Carter B (2011) Time-use diaries are acceptable to parents with a disabled preschool child and are helpful in understanding families’ daily lives. Child Care Health Dev 37:168–174PubMedCrossRefGoogle Scholar 126. Thurgate C, Warner H (2005) Living with disability: part 1. Paediatr Nurs 17:37–44PubMedCrossRefGoogle Scholar 127. Thurston S, Paul L, Loney P, Ye C, Wong M, Browne G (2011) Associations and costs of parental symptoms of psychiatric distress in a multi-diagnosis group of children with special needs. J Intellect Disabil Res 55:263–280PubMedCrossRefGoogle Scholar 128. Toly VB, Blanchette JE, Sikorski S, Musil CM, Al-Hamed A (2017) Maternal perspectives of well siblings’ adjustment to family life with a technology-dependent child. J Fam Nurs 23:392–417PubMedCrossRefGoogle Scholar 129. Van Cleave J (2015) Children with special health care needs: with population-based data, better individual care plans. Pediatrics 135:e1040–e1041PubMedCrossRefGoogle Scholar 130. Van Nimwegen KJ, Kievit W, Van Der Wilt GJ, Schieving JH, Willemsen MA, Donders AR et al (2016) Parental quality of life in complex paediatric neurologic disorders of unknown aetiology. Eur J Paediatr Neurol 20:723–731PubMedCrossRefGoogle Scholar 131. Verberne LM, Kars MC, Schouten-Van Meeteren AY, Bosman DK, Colenbrander DA, Grootenhuis MA et al (2017) Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study. Eur J Pediatr 176:343–354PubMedPubMedCentralCrossRefGoogle Scholar 132. Wakil N, Fitzpatrick EM, Olds J, Schramm D, Whittingham J (2014) Long-term outcome after cochlear implantation in children with additional developmental disabilities. Int J Audiol 53:587–594PubMedCrossRefGoogle Scholar 133. Ward C, Glass N, Ford R (2015) Care in the home for seriously ill children with complex needs: a narrative literature review. J Child Health Care 19:524–531PubMedCrossRefGoogle Scholar 134. Weaver K, Mitcham C (2008) Nursing concept analysis in North America: state of the art. Nurs Philos 9(3):180–194PubMedCrossRefGoogle Scholar 135. Wei X, YU JW (2012) The concurrent and longitudinal effects of child disability types and health on family experiences. Matern Child Health J 6:100–108CrossRefGoogle Scholar 136. Weng HJ, Niu DM, Turale S, Tsao LI, Shih FJ, Yamamoto-Mitani N, Chang CC, Shih FJ (2012) Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver syndrome in Taiwan. J Clin Nurs 21:160–169PubMedCrossRefGoogle Scholar 137. Whiting M (2012) What it means to be the parent of a child with a disability or complex health need. Nurs Child Young People 26:26–29Google Scholar 138. Whiting M (2013) Impact, meaning and need for help and support: the experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence. J Child Health Care 17:92–108PubMedCrossRefGoogle Scholar 139. Whiting M (2014) What it means to be the parent of a child with a disability or complex health need. Nurs Child Young People 26:26–29PubMedGoogle Scholar 140. Widger K, Picot C (2008) Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 34:53–58PubMedGoogle Scholar 141. Willis E (2007) Symptom care flowcharts: a case study. Paediatr Nurs 19:14–17PubMedCrossRefGoogle Scholar 142. Woodgate RL, Edwards M, Ripat J (2012) How families of children with complex care needs participate in everyday life. Soc Sci Med 75:1912–1920PubMedCrossRefGoogle Scholar 143. Woodgate RL, Edwards M, Ripat JD, Borton B, Rempel G (2015) Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatr 15:1–15CrossRefGoogle Scholar 144. Woodgate RL, Edwards M, Ripat JD, Rempel G, Johnson SF (2016) Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child Care Health Dev 42:504–512PubMedCrossRefGoogle Scholar 145. Woodgate RL, Zurba M, Edwards M, Ripat J, Rempel G (2017) The embodied spaces of children with complex care needs: effects on the social realities and power negotiations of families. Health Place 46:6–12PubMedCrossRefGoogle Scholar 146. World Health Organisation (2012) Congenital anomalies. World Health Organisation, GenevaGoogle Scholar 147. World Health Organization (2010) Framework for action on interprofessional education and collaborative practice. WHO, Geneva Accessed 1st July 2018Google Scholar 148. Young NL, Gilbert TK, Mccormick A, Ayling-Campos A, Boydell K, Law M et al (2007) Youth and young adults with cerebral palsy: their use of physician and hospital services. Arch Phys Med Rehabil 88:696–702PubMedCrossRefGoogle Scholar 149. Zajicek-Farber ML, Lotrecchiano GR, Long TM, Farber JM (2015) Parental perceptions of family centered care in medical homes of children with neurodevelopmental disabilities. Matern Child Health J 19:1744–1755PubMedCrossRefGoogle Scholar 150. Ziviani J, Darlington Y, Feeney R, Rodger S, Watter P (2014) Early intervention services of children with physical disabilities: complexity of child and family needs. Aust Occup Ther J 61:67–75PubMedCrossRefGoogle Scholar Copyright information © The Author(s) 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (, which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. Authors and Affiliations Maria Brenner1Email authorView author's OrcID profileClaire Kidston1Carol Hilliard2Imelda Coyne1Jessica Eustace-Cook1Carmel Doyle1Thelma Begley1Michael J. Barrett21.School of Nursing & MidwiferyTrinity College Dublin University of DublinDublin 2Ireland2.Our Lady’s Children’s HospitalDublin 12Ireland

This is a preview of a remote PDF:

Maria Brenner, Claire Kidston, Carol Hilliard, Imelda Coyne, Jessica Eustace-Cook, Carmel Doyle, Thelma Begley, Michael J. Barrett. Children’s complex care needs: a systematic concept analysis of multidisciplinary language, European Journal of Pediatrics, 2018, 1-12, DOI: 10.1007/s00431-018-3216-9