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‐
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‐
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‐
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‐
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‐
11,
79] as exerting influence over care decisions.