In this scoping review 21 papers were reviewed, and five themes (agency, participation, impact, decision making, and communication) were identified as being perceived and reported to be core to the concept of child-centred care in healthcare. In the Discussion these themes are considered in the context of the wider literature on children’s agency, participation, decision-making, and communication. The Discussion also contextualises child-centred care in the wider discussions of centredness and person-centred care in healthcare. The Discussion also considers the development and adoption and application (or lack thereof) of child-centred care, its limitations, and benefits.
What constitutes the concept of child-centred care in healthcare?
What is clear from the review is that there is no clear consensus across the papers about what constitutes child-centred care suggesting that it is an emerging, ambiguous and poorly defined concept. However, four interconnected concepts—agency, participation, decision-making and communication—were identified or discussed to some degree in many but not all papers. These concepts are ones which typically appear in contemporary literature about children’s positioning with society, healthcare and children’s health literacy and it would be hard to argue that any of these are unimportant. However, even when these concepts were present in the reviewed papers they were often simply referred to rather than clearly defined, perhaps reflecting the complexity of such concepts and the fact that definitions are contested. For the most part the papers neither state the depth or degree to which agency, participation, decision-making and communication should be present or how they can be enacted authentically to ensure that child-centred care ensues. The belief that child-centred care is important is evident in the reviewed papers and this aligns to other work that proposes the importance of child-centred approaches to care are key to good quality care (see for example [
31].
In the review, agency was mostly discussed in terms of children’s rights [
1,
3,
31] and their positioning in society, and closely linked with participation [
3,
4,
25]. Agency is argued to result from relationships between human beings and their environment [
38] and that it is a continuum characterised by interdependence [
39]. Agency is clearly important as it requires adults to acknowledge the inherent wisdom and skills of children and young people [
40] perceiving them as citizens [
41]. Healthcare professionals who wish to work in a child-centred care way need to accept that children are already beings with agency who can reflect on and co-construct their worlds [
42].This means that child-centred care requires healthcare professionals and organisations to ensure that they reduce barriers to children acting agentically, and create opportunities for children to actively participate and enact their agency, for example, through shared decision-making [
43] and participation in clinical encounters [
44] and during periods of hospitalisation [
45] as well as interventions focusing on health and well-being [
46]. However, as seen in the review [e.g.,3, 27, 28, 30] research that specifically focuses on children’s participation in medical encounters reveals that their participation is typically marginal [
47,
48].
Agency and participation require acknowledgement that children and health professionals are actors within what has been described as a networked system [
49]. In a networked system everything affects everything else, meaning that factors (in the case of our review, participation, agency, decision-making and communications) are contingent on each other, competing agendas and ultimately interdependent [
39]. Child health literacy is a field with growing momentum, and closely mirrors the core concepts of participation, agency, decision-making and communication identified in our review. The current global attention being given to health literacy in general, as well as to child health literacy, may well be a driver towards achieving child-centred care.
The review found that communication was perceived to be a core element of child-centredness and that this involved creating a space for communication [
27] and supporting children to be able to express their views and engage in dialogue and conversation [
24,
29,
32,
33]. Recent work addressing child-centred communication strategies aligns with findings from the review and proposes core steps (greet, engage, involve and share) upon which good communication, even in time limited encounters, can be built [
50]. Other work, albeit not expressed as overtly child-centred, supports the need to actively promote communication with all children [
51,
52], respect children’s expertise [
53], and address health literacy issues [
54]. The shift toward more child-centred communication practices can be seen in the endorsement of using resources co-developed with children and young people to support communication [
55].
Decision-making was another aspect of child-centredness that was identified in the review (see for example, [
27,
31,
33]. However, there is robust evidence that shared decision making is not consistently implemented, often resulting from barriers such as healthcare professionals having insufficient time, the presence of power imbalances and healthcare professionals not having the requisite skills for shared decision making [
56]. To overcome such issues, strategies to promote shared decision-making include the use of decision support tools to facilitate the participation of children. However, the review also noted the tension between whether the views of parents should supersede the views of children in decision making [
1,
16]. The ethics of whose voice (child or parent) should hold sway and in what circumstances is complex and contextual. Yet until children can be active participants in communication that concerns them, engagement in decision making is not possible. Research shows that children are often marginalised in triadic (child-parent-healthcare professional) clinical encounters [
48] and that dialogue is often dyadic (parents-professionals) [
47] resulting in exclusion of children’s perspectives.
The review revealed a lack of evidence for the impact of child-centred care and how children benefit from child-centred care. This is perhaps unsurprising considering the more firmly embedded concept of FCC in children’s healthcare is still reported to lack robust impact evidence [
15,
25,
57,
58]. No clearly defined consensus measures to determine impact of child-centred care were evident within the review, reflecting the lack of attention to developing measures and/or measuring the impact of child-centred care in the literature. This is somewhat at odds with what is seen in the much larger field of (primarily adult) patient-centred care which is now widely recognised internationally as a means of delivering high quality healthcare. A meta narrative review of patient-centred care [
59] identified 50 measurement instruments being used, albeit only 10 of these were directly measuring patient-centred care. If child-centred care is to be a sustainable and convincing model to guide practice and able to compete with other models or frameworks of care, it needs to establish robust evidence of its effectiveness. Other facets of child health practice that are child-centred if not completely embodying child-centred care are child-centred outcome measures and child-centred experience measures. Scott et al. [
60] argue that using person-centred outcome measures in “routine paediatric care is key to child- centred quality care” (p42) but they note that implementation of and adherence to such measures is not simple and barriers exist.
Evidence from different countries with different health systems shows that the lack of a systematic approach, at all levels in an organisation, can impede the well-integrated adoption of person-centred care [
61]. Successful adoption requires the use of evidence-based knowledge, guidelines and national regulations [
61]. The lack of a clear evidence base for impact and benefit as well as a lack of guidelines and regulation perhaps provides a rationale for why child-centred care has not, so far, been effectively adopted across health care systems.