The Concept of Child-Centred Care in Healthcare: A Scoping Review. — TEI-tagged view

Bernie CarterpersName, Sarah YoungpersName, Karen FordpersName, Steven CampbellpersName (2024date). “The Concept of Child-Centred Care in Healthcare: A Scoping Review..” Pediatric Reportstitle·j.

Object of study — the concept of child-centred careterm·dom in children's healthcare

Research question — what constitutes the concept of child-centred careterm·dom within children's healthcare

Contribution — five themes core to child-centred careterm·dom and a finding that its impact lacks robust evidence

Full text — tagged

The Concept of Child-Centred Careterm·dom in Healthcare: A Scoping Reviewterm·key.

Abstract Although child-centred careterm·dom is increasingly referred to within the nursing literature, a clear definition of child-centred careterm·dom and clarity around the concept is yet to be achieved. The objectives of this reviewterm·mth were to examine the following: (1) What constitutes the concept of child-centred careterm·dom in healthcare? (2) How has the concept of child-centred careterm·dom developed? (3) What is the applicability of child-centred careterm·dom and what are its limitations? (4) How does the concept of child-centred careterm·dom benefit and inform children’s healthcare? In total, 2984 papers were imported for screening, and, following the removal of duplicates and screening, 21 papers were included in the scoping reviewterm·key. The findings suggest that child-centred careterm·dom is an emerging, ambiguous poorly defined concept; no clear consensus exists about what constitutes child-centred careterm·dom. Although it seems antithetical to argue against child-centred careterm·dom, little robust evidence was identified that demonstrates the impact and benefit of child-centred careterm·dom. If child-centred careterm·dom is to be a sustainable, convincing model to guide practice and compete with other models of care, it needs to establish robust evidence of its effectiveness, the impact on children and their families, as well as the wider impacts on the healthcare system.

Keywords: child-centred careterm·dom, agencyterm·dom, participationterm·key, decision makingterm·key, communicationterm·key, impact 1. Introduction The position of children in healthcare reflects their changing and evolving positioning in society more broadly [ 1 ]. The concept of child-centred careterm·dom orientates children to a more central position within children’s healthcare, where the child is at the centre of thinking and practice [ 1 , 2 , 3 ].

The concept of child-centred careterm·dom adds to the different notions or concepts of centredness used to describe the focus of healthcare in general as well as healthcare for children and youngpersName people [ 4 ]. Other facets of centredness in healthcare include person-centred (and patient-centred) care, family-centred careterm·dom (FCCterm·dom) and various (and perhaps confounding) combinations of these. The precise meanings of each are subject to confusion and misunderstanding as well as uncertainties. Reactions or responses to societal shifts can be seen as the drivers for these different concepts. The different terms are considered in the following section.

The term ‘person-centred careterm·dom’ (PCCterm·dom) evolved from the term ‘patient-centred care’ and is a loosely defined term [ 5 , 6 ] but typical definitions present it as a holistic approach to care that is respectful and individualised, that includes negotiation of care, choice and where persons receiving care are empowered to be involved in health decisions at the level they choose [ 4 , 7 ]. PCCterm·dom was described in the mid-20th century when there was a call to understand the patient as a whole person. Key attributes of PCCterm·dom are that patients should be treated as individuals and with respect and dignity and that their needs, wants and preferences are included in care planning [ 8 ]. In PCCterm·dom, the focus is on the individual—an adult with autonomy [ 4 ]. PCCterm·dom has been seen to typically, or traditionally, refer to adults rather than children, with a strong representation within the mental healthcare, older person and dementia care literature [ 4 ].

In the context of children’s healthcare, FCCterm·dom recognises that children need to be cared for in the context of their family, that families are the constant in the child’s life and the family’s values and priorities should be central in the plan of care for the child [ 9 ]. The theoretical origins of FCCterm·dom came from the understanding of child attachment theories and recommendations from the Platt Report [ 10 ], which also had a significant influence on changes to care of children in hospitals. Where parents were largely excluded from children’s hospital wards in the 19th and the first part of the 20th century, there have been incremental changes towards acceptance of parents, their presence and building partnerships [ 11 , 12 , 13 ].

In FCCterm·dom, the family is the unit of care [ 14 ] and involves healthcare providers working in partnership with families, and the care of the child is in the context of their family [ 3 ]. In FCCterm·dom, the focus is on adults—the parents and health professionals rather than the child. In FCCterm·dom, parents and health professionals are the recognised active members and children and youngpersName people are allocated a more passive and less prominent role [ 1 , 15 ]. FCCterm·dom is described as having been a preferred approach to children’s healthcare for some decades; however, complex issues have been identified that compromise the effectiveness and implementation of this model including relationship, attitudinal and resource factors [ 2 , 14 ].

Current constructions of childhood that lie within an emancipatory, rights-based, citizenship-oriented and participatory paradigm [ 16 ] have been major drivers in the development of the concept of child-centred careterm·dom [ 17 , 18 ]. Child-centred careterm·dom in healthcare reflects the broader societal view of children’s rights that is framed by the UN Convention on the Rights of the Child [ 19 ]. The approach recognises children as social actors both in their own right and as active participants in their care, with its theoretical origins in the new sociology of childhood [ 20 ].

Rather than a model that provides a method or recipe for achieving child centredness, child-centred careterm·dom is seen as an approach or philosophy that underpins and informs children’s healthcare. The approach places children at the centre of healthcare practice and, where able, children and youngpersName people are included as active participants in their care and decision makingterm·key [ 2 , 4 ]. Child-centred approaches recognise that children and youngpersName people experience illness and disability differently than adults and that their healthcare needs are different than those of adults [ 2 ]. The premise that the best interests of the child should be the paramount consideration underpins the approach [ 2 ]. In child-centred careterm·dom, the central role of parents and families in relationships and interactions continues to be acknowledged [ 2 , 4 ].

The difference between child-centred careterm·dom and FCCterm·dom is one of emphasis based on the extent to which children’s interests are highlighted or prioritised in the planning and delivery of care [ 21 , 22 ]. In child-centred careterm·dom, the focus is on the child in the context of their family. Child-centred careterm·dom acknowledges the need to specifically focus on children and youngpersName people. It also recognises that their views and concerns are not necessarily the same as those of parents/carers or healthcare providers [ 2 , 15 , 23 ].

PCCterm·dom and child-centred careterm·dom have more similar attributes than child-centred careterm·dom and FCCterm·dom [ 4 ]. These commonalities include competence, values, own needs and active participationterm·key [ 4 ].

Although the concept of child-centred careterm·dom is increasingly referred to in the healthcare literature, particularly within the nursing literature, a clear definition of child-centred careterm·dom and clarity around the concept is yet to be achieved and further work is needed in developing the definition [ 15 , 24 ].

Aims and Objectives The aim of this scoping reviewterm·key was to identify the concept of child-centred careterm·dom in healthcare, to provide clarity on the concept of child-centred careterm·dom, and to evaluate its application/appropriateness.

The main objective of this reviewterm·mth was to examine what constitutes the concept of child centred within children’s healthcare.

Further objectives included the following: How has the concept of child-centred careterm·dom developed?

What is the applicability of child-centred careterm·dom and what are its limitations?

How does the concept of child-centred careterm·dom benefit and inform children’s healthcare?

2. Methods The scoping reviewterm·key protocol was published in 2018 [ 24 ]. This scoping reviewterm·key was designed with the intention of evaluating the concept of child-centred careterm·dom in healthcare in order to achieve clarity on the concept and its applicability, benefits and potential to inform the evidence base of children’s healthcare policy and practice. To achieve this aim, a literature reviewterm·mth method was adopted, using the Preferred Reporting Items for Systematic Reviewsterm·mth and Meta-analyses Extension for Scoping Reviewsterm·key (PRISMA-ScR) approach [ 25 , 26 , 27 ].

As this was a scoping reviewterm·key, no ethics approval was required.

2.1. Inclusion Criteria In a scoping reviewterm·key, it is important to establish inclusion criteria to determine which studies are eligible for inclusion in the reviewterm·mth [ 26 ]. In this case, the context of included studies was those related to children and adolescents in any setting where healthcare may be provided (e.g., in-patient and out-patient settings; tertiary, secondary and primary care settings; respite and hospice settings; medical home, home-based care and school settings) [ 24 ]. The types of studies included in this reviewterm·mth include peer-reviewed papers and opinion papers. In light of the complex nature of this scoping reviewterm·key that addresses the development of the concept of child-centred careterm·dom, the decision was made not to include documents related to policy documents from governments, healthcare organisations, professional bodies and consumer advocacy groups.

2.2. Search Strategy Several databases (CINAHL, MEDLINE, Web of Science) were searched using a combination of terms. This search strategy was developed to enable papers to be identified that related to child-centred careterm·dom. The selected search terms were chosen based on our knowledge of the topic. Studies were restricted to the English language with a date range of 1990–2021. The year 1990 was chosen as the cut-off date as this is the point at which the concept of CCC in healthcare appears in the literature. Peer-reviewed literature, as well as some grey literature and dissertations, were eligible for inclusion in the study. Search terms included the following: (child+ OR adolescence+) OR (child OR children OR adolescent); adolescent health services OR child health services+ or family-centered care+ OR patient-centered care+; (child* centered OR child* centered OR child* rights OR child* perspective OR child* voice OR child* view OR child* participationterm·key OR child* involvement) OR patient autonomy OR decision makingterm·key, patient+ OR decision makingterm·key, family OR patient rights+; and combinations of these searches. For more details of these searches across the databases, please refer to the Supplementary Materials .

2.3. Screening and Eligibility From the three databases, 2984 results were retrieved and exported to Covidence ® , and after the automatic removal of 114 duplicates, 2870 records remained. The titles and abstracts of these records were assessed against the inclusion criteria listed above. All abstracts and metadata were imported into Covidence ® to facilitate the implementation of the PRISMA-ScR screening approach (see Figure 1 ). Of the 155 papers remaining after title/abstract screening, 134 were excluded after a full-text reviewterm·mth, leaving 21 papers for inclusion. Three authors (SY, KF, BC) participated in the abstract/title screening process, and three authors (SC, KF, BC) participated in the full-text reviewterm·mth process. The validity of the papers included in the full-text reviewterm·mth was assessed against the following three eligibility criteria: The focus of the paper was adequately on child-centred careterm·dom and not FCCterm·dom; There was sufficient content relevant to defining child-centred careterm·dom on a practical or conceptual level, including papers that may not have used the term child-centred careterm·dom but whose content was relevant to the germinal concept of child-centred careterm·dom; The outcomes and setting were relevant to this scoping reviewterm·key.

PRISMA flow diagram for the scoping reviewterm·key process.

If the three criteria above were met, the paper was retained. Figure 1 shows the flow of papers through the reviewterm·mth process.

2.4. Data Extraction and Charting For each paper, the author, year, study population, country of origin, intervention type, study aims, methodology, outcome measure(s) and important results were abstracted from the article, as per the guidance for scoping reviewterm·key procedures [ 26 , 28 ]. A summary of these findings is shown in the data extraction tables ( Table 1 and Table 2 ), which present a summary of key data from the reviewterm·mth.

Discursive papers included in the reviewterm·mth.

Empirical papers included in the reviewterm·mth.

3. Results The results are presented in a narrative format. First, an overview of the papers is presented, followed by five themes integral to the concept of child-centred careterm·dom. Themes were identified using an inductive approach. Recurring concepts or elements of child-centred careterm·dom in the included papers were identified by the team in collaboration and the resultant themes were determined. Individual team members then searched each of the included papers for the presence of the named theme (or associated synonyms).

3.1. Demographics of Included Papers Twenty-one papers were included in the reviewterm·mth. Of these, 10 papers were categorised as discursive [ 1 , 3 , 4 , 15 , 23 , 29 , 30 , 31 , 32 , 33 ] and 11 were empirical papers [ 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 ].

3.2. Overview of Discursive Papers 3.2.1. Dates of Publication The 10 discursive papers were published between 2011 and 2021, with most (n = 7) published between 2011 and 2018 [ 1 , 3 , 4 , 15 , 23 , 30 , 33 ] and three published in 2020–2021 [ 29 , 31 , 32 ].

3.2.2. Authorship Primarily, papers were co-authored by people from Europe (Ireland [ 3 , 4 ], Sweden [ 3 , 4 , 23 ], the UK [ 1 , 36 ], Australia [ 1 , 15 , 31 ], and New Zealand [ 1 , 30 , 31 ], with one paper each from South Africa [ 33 ] and Canada [ 32 ], and one with extensive international authorship [ 29 ].

3.2.3. Discursive Focus Most papers (n = 4) were focused on a conceptual consideration of CCC in relation to other models and focused on types of ‘centredness’ such as FCCterm·dom and PCCterm·dom [ 3 , 4 , 15 , 31 ]. Two papers were proposing or considering a merger of child-centred careterm·dom with FCCterm·dom with one paper proposing that the merger should be ‘family and child-centred careterm·dom’ (FCCCterm·dom) [ 30 ] and the other proposing a different ordering of the concepts with the child as the lead concept with the term being ‘child and family-centred careterm·dom’ (CFCCterm·dom) [ 32 ]. Individual papers addressed child-centred careterm·dom in relation to other theories [ 1 ].or in relation to children’s rights [ 33 ] or perspectives [ 23 ]. One paper was a position statement on CCC [ 29 ].

3.3. Overview of Empirical Papers 3.3.1. Dates of Publication The 11 empirical papers were published between 2005 and 2022; 1 was published in 2005 [ 36 ] and then there was a gap until 2012, with 4 papers published between 2012 and 2019 [ 35 , 41 , 43 , 44 ] and the remaining 6 papers were published between 2020 and 2022 [ 34 , 37 , 38 , 39 , 40 , 42 ].

3.3.2. Countries Data Generated from Primary data was generated from five countries: Sweden (n = 4) [ 34 , 37 , 39 , 40 ], the UK (n = 2) [ 36 , 38 ], New Zealand (n = 2) [ 41 , 42 ], the USA (n = 1) [ 44 ] and Canada (n = 1) [ 35 ]. One paper was a systematic reviewterm·mth in which most papers were from the UK, USA and Europe [ 43 ].

3.3.3. Study Design Most papers (n = 8) used a qualitative design [ 34 , 35 , 36 , 37 , 38 , 40 , 41 , 42 ]. Of these, two used a phenomenological approach [ 41 , 42 ], one used grounded theory [ 34 ], one used participant inquiry [ 36 ] and one used a case study [ 35 ], with the remaining three papers not stating a specific design [ 37 , 38 , 40 ].

Two papers reported using a quantitative approach [ 39 , 44 ]; of these, one was a feasibility study using a non-randomised quasi-experimental cluster design [ 39 ] and one was used for secondary data analysis [ 44 ].

One paper was a systematic reviewterm·mth [ 43 ].

3.3.4. Level of Child Involvement Since the focus of this reviewterm·mth was on child-centred careterm·dom, it seemed appropriate to try and appraise the level to which work underpinning the papers involved children. To this end, we created three, arguably crude, categories that could be utilised to report the level of child involvement. The categories were ‘no involvement’ (papers in which there was no evidence of child involvement or engagement, e.g., in academic opinion pieces where the only voice is that of academics/researchers); ‘marginal involvement’ (evidence of some indirect involvement of children); and ‘authentic involvement’ (evidence of direct involvement of children, such as in research studies where children’s voices were either evident or children acted as advisors). Five papers were categorised as indicating ‘authentic involvement’ [ 34 , 36 , 38 , 39 , 40 ], four papers were categorised as ‘marginal involvement’ [ 35 , 37 , 41 , 42 ] and two categorised as ‘no involvement’ [ 43 , 44 ].

3.3.5. Sample Size and Characteristics The sample size of children ranged from 2 [ 35 ] to 785 [ 39 ], with most falling in the range of 10 [ 36 ] to 26 [ 38 , 41 ] children.

Samples also included other stakeholders such as parents (total n = 839) [ 38 , 44 ], siblings (n = 13) [ 38 ], health professionals (total n = 34) [ 37 , 38 , 42 ] and other stakeholders (n = 15) [ 38 ].

Most papers were in the range of 4–15 years [ 34 , 38 , 39 , 40 , 41 ], with one paper including a child aged 2 years [ 36 ] and one paper including a case report on a 24 year old [ 35 ].

3.4. Themes Five themes were identified: agencyterm·dom, participationterm·key, impact, decision makingterm·key and communicationterm·key (see Figure 2 ).

Overview of key themes.

3.4.1. Agencyterm·dom Of the 21 papers, 10 made direct reference to children being agentic, social agents or agentic beings [ 1 , 3 , 4 , 32 , 35 , 38 , 39 , 40 , 41 , 42 ]. Of these, six were empirical papers [ 35 , 38 , 39 , 40 , 41 , 42 ] and four were discursive [ 1 , 3 , 4 , 32 ]. Although one of the empirical papers mentioned agencyterm·dom frequently, it was not directly related to CCC but to a relational ethics framework [ 35 ].

Agencyterm·dom and its synonyms were linked to children’s rights [ 1 , 3 , 4 , 38 ]. Agencyterm·dom and being agentic were linked to participationterm·key in general [ 3 , 32 ] and, more specifically, participationterm·key in the construction of their own lives [ 4 ], in healthcare [ 38 ], health dialogues [ 39 ] and care planning [ 42 ].

Children’s agencyterm·dom reflects adults respecting children’s independence [ 1 , 3 ], competence [ 1 ], ability to construct an understanding of issues related to them [ 40 ] and acknowledgment of their experiences [ 3 ]. Agencyterm·dom or being agentic was linked to partnerships and/or collaborations and interconnectedness [ 4 , 41 ] and respect [ 3 ].

Agencyterm·dom was reported as being constrained or shaped by adults [ 1 , 32 ], as well as the exclusion from research participationterm·key through a reliance on proxies [ 38 ], or by limitations to inclusivity of existing methodologies and methods [ 32 ] and to equity of opportunity [ 32 ].

3.4.2. Participationterm·key Of the 21 studies, 18 referred to children’s participationterm·key. Of those 18 studies, 8 were empirical papers [ 34 , 36 , 37 , 38 , 39 , 40 , 41 , 44 ] and 10 were discursive [ 1 , 3 , 4 , 15 , 23 , 29 , 31 , 32 , 33 , 35 ]. One empirical paper identified participationterm·key solely in terms of [ 36 ] research.

The synonyms ‘involvement’ and ‘inclusion’ were also used to indicate participationterm·key. Participationterm·key as a concept is not well defined [ 34 ] but includes participationterm·key in decision makingterm·key and care and eliciting children’s opinions, perspectives and preferences [ 3 , 29 , 34 , 37 , 38 , 39 ].

Participationterm·key was identified as essential in accordance with children’s rights, with 14 papers referring to the UN Convention on the Rights of the Child and/or national guidance [ 1 , 3 , 4 , 15 , 23 , 29 , 31 , 32 , 33 , 35 , 37 , 38 , 39 , 40 ].

Although a prerequisite for rights-based child-centred careterm·dom, the level of participationterm·key can vary from exclusion, limited opportunities [ 34 , 35 ] or minor degrees of participationterm·key in more trivial matters [ 34 ], to involvement in serious subjects such as complex care [ 35 ] and end of life [ 37 , 38 ].

Like agencyterm·dom, children’s participationterm·key can be enabled or constrained by adults, both healthcare professionals and parents. Children are dependant on adults and the systems around them to ensure and optimise their participationterm·key [ 1 , 3 , 23 , 29 , 32 , 34 , 41 ].

Participationterm·key should be at a level of the child’s own choosing [ 32 , 36 , 40 ]. The child’s age, maturity and competence are factors influencing participationterm·key [ 1 , 4 , 23 , 39 , 41 ]. Children are more capable of participating in matters of concern for them than is often recognised [ 35 ].

3.4.3. Decision Makingterm·key Of the 21 papers included in this reviewterm·mth, 12 mentioned decision makingterm·key in some way [ 1 , 3 , 4 , 15 , 23 , 29 , 34 , 35 , 38 , 40 , 41 , 43 ]. Of the empirically based papers, six referred to decision makingterm·key [ 34 , 35 , 38 , 40 , 41 , 43 ]. And for the discursive papers, six also referred to decision makingterm·key [ 1 , 3 , 4 , 15 , 23 , 29 ].

In terms of defining decision makingterm·key, this was loosely presented and has clear links with another theme in this reviewterm·mth: agencyterm·dom. For the discursive papers, there were positive statements about children being involved in decision makingterm·key [ 34 , 40 ], clear statements about them not being involved in decision makingterm·key [ 35 , 43 ] and calls for children to be involved in decision makingterm·key [ 38 , 41 ]. Calls were made for children to be involved in their own decision makingterm·key [ 34 ] and it was noted that children liked to participate and that they could influence their choice. However, others made claims about the exclusion of children’s voices [ 35 ] and that they are rarely involved in decision makingterm·key. The assertions included the child’s needs and interests always being at the centre of care and decisions [ 38 ] and children needing to be “creators of their own healthcare experience” [ 41 ]. For the discursive papers, the divisions were not quite so clear; there were assertions for positive involvement in decision makingterm·key [ 29 , 43 ] and participationterm·key in all aspects of healthcare delivery (including decision makingterm·key) [ 3 ]. Clearer was the discussion about whether the views of parents should supersede the views of children in decision makingterm·key [ 1 , 23 ], which was not overt in the empirical papers. Notions of dignity impinge on this, including whether dignity can be maintained if the child is not involved in the decision makingterm·key [ 4 ].

3.4.4. Communicationterm·key Of the 21 papers included in this reviewterm·mth, 14 mentioned communicationterm·key in some manner [ 1 , 3 , 4 , 15 , 23 , 31 , 34 , 35 , 36 , 39 , 40 , 41 , 43 , 44 ]. Of the empirically based papers, seven [ 34 , 35 , 39 , 40 , 41 , 43 , 44 ] referred to communicationterm·key in some form. And for the discursive papers, six papers [ 1 , 3 , 15 , 23 , 31 , 36 ] discussed some aspects of communicationterm·key.

Various terms are incorporated in this interpretation of communicationterm·key [ 44 ]. For the empirical papers, these included the following: creating a communicationterm·key space [ 34 ], children’s voices [ 35 ], dialogue [ 40 ], expression of views [ 39 , 40 ], co-creation [ 41 ], information sharing [ 43 ] and ‘sitting with’ [ 44 ]. For the discursive papers, a similar and complementary set of terms was discussed. These included encouraging dialogue [ 36 ], children representing their own experiences and wishes [ 3 ], Ubuntu-type interdependence [ 1 ] and conversations about support [ 31 ]. Having a right to participate [ 15 ] was also mentioned, including the need to consider children’s perspectives to improve the way they are treated [ 23 ].

As shown above, the terms for communicationterm·key often fence around the actual term. Few directly discussed communicationterm·key [ 15 , 39 , 40 , 44 ]. However, the other aspects cannot occur without communicationterm·key with the children. It is also clear that communicationterm·key is not a clearly defined aspect of child-centred careterm·dom, including its key role in achieving child-centred careterm·dom.

3.4.5. Impact There is limited discussion of the impacts of child-centred careterm·dom on any level amongst the papers included in this reviewterm·mth. In total, 10 of the 21 papers included mentioned the impact of CCC on some level, be it on practice, outcomes or experience [ 1 , 15 , 32 , 34 , 36 , 37 , 38 , 40 , 42 , 43 ]. Of these papers, three were discursive [ 1 , 15 , 32 ] and seven were empirical [ 34 , 36 , 37 , 38 , 40 , 42 , 43 ]. Of the seven empirical papers, none were quantitative studies, six were qualitative studies [ 34 , 36 , 37 , 38 , 40 , 42 ] and one systematic reviewterm·mth was included [ 43 ]. There is limited evidence of broad outcome or impact assessment, as evidenced by the lack of quantitative empirical papers included in this section.

Of the ten papers that discuss the impact of child-centred careterm·dom, six (five empirical [ 34 , 37 , 40 , 42 , 43 ], one discursive [ 1 ]) included a direct reference to the impact of child-centred careterm·dom, but often these impacts were context specific and not generalisable [ 34 , 37 , 40 , 42 ]. For example, one paper [ 42 ] showed that a child-centred careterm·dom model is an approach preferred by healthcare providers in an acute situation where the child has been potentially endangered by their family (in this case, non-accidental head injury of infants). Other papers made more generalisable, less context-specific conclusions [ 1 , 43 ]. One paper stated that child-centred careterm·dom is becoming more significant in terms of shaping children’s healthcare [ 1 ], and another that child-centred careterm·dom has positive impacts on children in terms of self-esteem, patient empowerment and numerous treatment outcomes [ 43 ].

One paper ([ 38 ] empirical) included more indirect reference to the impacts of child-centred careterm·dom, including a discussion of potential rather than assessed impacts, and that development of a child-centred outcome measure was needed but not yet developed. One paper ([ 36 ] empirical) cited both direct and indirect impacts of child-centred careterm·dom on practice. This paper included empirical findings from a child-centred intervention, but also concluded, more indirectly, that children’s perspectives should have a greater influence on future practice.

Two papers (both discursive) overtly cited a lack of evidence for the provision of child-centred careterm·dom [ 32 ] and its implementation/effectiveness [ 15 ].

4. Discussion In this scoping reviewterm·key, 21 papers were reviewed, and five themes (agencyterm·dom, participationterm·key, impact, decision makingterm·key, and communicationterm·key) were identified as being perceived and reported to be core to the concept of child-centred careterm·dom in healthcare. In the discussion, these themes are considered in the context of the wider literature on children’s agencyterm·dom, participationterm·key, decision makingterm·key and communicationterm·key. The discussion also contextualises child-centred careterm·dom in the wider discussions of centredness and person-centred careterm·dom in healthcare. The discussion also considers the development and adoption and application (or lack thereof) of child-centred careterm·dom and its limitations and benefits.

4.1. What Constitutes the Concept of Child-Centred Careterm·dom in Healthcare?

What is clear from the reviewterm·mth is that there is no clear consensus across the papers about what constitutes child-centred careterm·dom, suggesting that it is an emerging, ambiguous and poorly defined concept. However, four interconnected concepts—agencyterm·dom, participationterm·key, decision makingterm·key and communicationterm·key—were identified or discussed to some degree in many but not all papers. These concepts are ones that typically appear in the contemporary literature about children’s positioning within 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 agencyterm·dom, participationterm·key, decision makingterm·key and communicationterm·key should be present nor how they can be enacted authentically to ensure that child-centred careterm·dom ensues. The belief that child-centred careterm·dom is important is evident in the reviewed papers and this aligns with other work that proposes that the importance of child-centred approaches to care is key to good quality care (see, for example [ 38 ]).

In the reviewterm·mth, the agencyterm·dom was mostly discussed in terms of children’s rights [ 1 , 3 , 38 ] and their positioning in society, and closely linked with participationterm·key [ 3 , 4 , 32 ]. Agencyterm·dom is argued to result from relationships between human beings and their environment [ 45 ], which is a continuum characterised by interdependence [ 46 ]. Agencyterm·dom is clearly important as it requires adults to acknowledge the inherent wisdom and skills of children and youngpersName people [ 47 ], perceiving them as citizens [ 16 ]. Healthcare professionals who wish to work in child-centred careterm·dom ways need to accept that children are already beings with agencyterm·dom who can reflect on and co-construct their worlds [ 48 ]. This means that child-centred careterm·dom 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 agencyterm·dom, such as, for example, through shared decision makingterm·key [ 49 ] and participationterm·key in clinical encounters [ 50 ] and during periods of hospitalisation [ 51 ], as well as interventions focusing on health and well being [ 52 ]. However, as seen in the reviewterm·mth, e.g. [ 3 , 34 , 35 , 37 ], research that specifically focuses on children’s participationterm·key in medical encounters reveals that their participationterm·key is typically marginal [ 53 , 54 ].

Agencyterm·dom and participationterm·key require the acknowledgment that children and health professionals are actors within what has been described as a networked systemterm [ 55 ]. In a networked systemterm, everything affects everything else, meaning that factors (in the case of our reviewterm·mth, participationterm·key, agencyterm·dom, decision makingterm·key and communicationterm·key) are contingent on each other and competing agendas and, ultimately, interdependent [ 46 ]. Child health literacyterm·key is a field with growing momentum, and closely mirrors the core concepts of participationterm·key, agencyterm·dom, decision makingterm·key and communicationterm·key identified in our reviewterm·mth. The current global attention being given to health literacy in general, as well as to child health literacyterm·key, may well be a driver towards achieving child-centred careterm·dom.

The reviewterm·mth found that communicationterm·key was perceived to be a core element of child-centredness and that this involved creating a space for communicationterm·key [ 34 ] and supporting children to be able to express their views and engage in dialogue and conversation [ 31 , 36 , 39 , 40 ]. Recent work addressing child-centred communicationterm·key strategies aligns with findings from the reviewterm·mth and proposes core steps (greet, engage, involve and share) upon which good communicationterm·key, even in time-limited encounters, can be built [ 56 ]. Other work, albeit not expressed as overtly child centred, supports the need to actively promote communicationterm·key with all children [ 57 , 58 ], respect children’s expertise [ 59 ] and address health literacy issues [ 60 ]. This shift toward more child-centred communicationterm·key practices can be seen in the endorsement of using resources co-developed with children and youngpersName people to support communicationterm·key [ 61 ].

Decision makingterm·key was another aspect of child centredness that was identified in the reviewterm·mth (see for example [ 34 , 38 , 40 ]. However, there is robust evidence that shared decision makingterm·key 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 makingterm·key [ 62 ]. To overcome such issues, strategies to promote shared decision makingterm·key include the use of decision-support tools to facilitate the participationterm·key of children. However, the reviewterm·mth also noted the tension between whether the views of parents should supersede the views of children in decision makingterm·key [ 1 , 23 ]. 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 communicationterm·key that concerns them, engagement in decision makingterm·key is not possible. Research shows that children are often marginalised in triadic (child–parent–healthcare professional) clinical encounters [ 54 ] and that dialogue is often dyadic (parents–professionals) [ 53 ], resulting in exclusion of children’s perspectives.

The reviewterm·mth revealed a lack of evidence for the impact of child-centred careterm·dom and how children benefit from child-centred careterm·dom. This is perhaps unsurprising considering that the more firmly embedded concept of FCCterm·dom in children’s healthcare is still reported to lack robust impact evidence [ 15 , 32 , 63 , 64 ]. No clearly defined consensus measures to determine the impact of child-centred careterm·dom were evident within the reviewterm·mth, reflecting the lack of attention to developing measures and/or measuring the impact of child-centred careterm·dom 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 reviewterm·mth of patient-centred care [ 65 ] identified 50 measurement instruments being used, albeit only 10 of these were directly measuring patient-centred care. If child-centred careterm·dom is to be a sustainable and convincing model to guide practice and be 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 careterm·dom, include child-centred outcome measures and child-centred experience measures. Scott et al. [ 66 ] 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 careterm·dom [ 67 ]. Successful adoption requires the use of evidence-based knowledge, guidelines and national regulations [ 67 ]. The lack of a clear evidence base for impact and benefit, as well as a lack of guidelines and regulations, perhaps provides a rationale for why child-centred careterm·dom has not, so far, been effectively adopted across healthcare systems.

4.2. How Has the Concept of Child-Centred Careterm·dom Developed?

It is difficult to identify whether or if child-centred careterm·dom has developed over the period covered in this reviewterm·mth, as the term has been used loosely; a lack of definitional sources lies at the root of this challenge. What is clearer is the tension between child-centred careterm·dom and FCCterm·dom [ 32 ]. Previously, there was no seeming questioning of the relationship between the two forms of care [ 32 ]. Now, there is greater evidence of a realisation that, while the two forms of care can be mutually supportive, they can also be at odds with each other, and the rights of children (for instance, a child’s right to be involved in decision makingterm·key) might be “trumped” by parental rights [ 23 ]. There is an overlap between child-centred careterm·dom and person-centred careterm·dom. However, work relating to person-centred careterm·dom typically focuses on adults [ 68 ] and there is the potential that person-centred approaches miss the particularities, uniqueness and changing dynamic of providing care for children. A future development proposed is melding the concept of child-centred careterm·dom with FCCterm·dom to become child and family-centred careterm·dom (CFCCterm·dom) [ 32 ], although this is likely to just blur the distinction between the two concepts and may not necessarily advance the position of children’s agencyterm·dom, participationterm·key and decision makingterm·key.

4.3. What Is the Applicability of Child-Centred Careterm·dom and What Are Its Limitations?

The applicability of child-centred careterm·dom lies in its potential to create a better balance in terms of power [ 23 ], empowerment [ 69 ] agencyterm·dom [ 32 , 40 ], participationterm·key [ 34 , 35 , 38 , 39 ] and respect for the child [ 3 ]. In many circumstances, the evidence shows that family-centred careterm·dom has essentially become parent oriented and often primarily oriented to maternal involvement [ 3 ]. Although not always talked of in terms of child-centred careterm·dom, there is evidence in the other literature, that aligns with child-centred careterm·dom values, such as dealing with the rights of the child and the importance of listening to the voice of the child and responding to their expressed needs [ 57 , 70 , 71 , 72 ]. However, ensuring that care genuinely becomes child-centred means that their voices and wishes should be given primacy wherever possible. The limitations of child-centred careterm·dom are twofold: firstly, the legal rights for decision makingterm·key lie with the parents [ 72 ], and secondly, the assumptions about the capacity of the child to be involved in decisions about their care, rather than be a passive receiver of care.

4.4. How Does the Concept of Child-Centred Careterm·dom Benefit and Inform Children’s Healthcare?

A child-centred careterm·dom approach has the potential, if implemented effectively, to acknowledge and reaffirm the rights of the child outlined in the United Nations Convention on the Rights of the Childterm·dom (UNCRCterm·dom) [ 19 ]. The approach recognises children’s rights to participate in healthcare matters and decisions about their care. The concept of child-centred careterm·dom positions children in a more central orientation within healthcare, so that the focus is on the child in the context of the family rather than the other way around (where the child’s perspectives are secondary).

Considering the evidence from the person-centred careterm·dom literature where benefits are considered in the wider context such as impacts on patient safety [ 73 ], rationales proposed for child-centred careterm·dom need to extend to debates about wider contextual issues rather than being inwardly focused.

4.5. Strengths and Limitations of the Reviewterm·mth The strength of the reviewterm·mth is that it focused on the literature that specifically included the term child-centred careterm·dom. However, the requirement for this specific term to be used resulted in the exclusion of many papers that were inherently child-centred in spirit, but which did not refer to the term. This resulted in the inclusion of only 21 papers and, of these, 10 were discursive and most empirical papers reported using qualitative approaches. More detailed and extensive research needs to be undertaken to create a more robust knowledge base from which to argue the merits or otherwise of child-centred careterm·dom. Future research needs to consider the use of quantitative methodologies to provide complementary evidence to the existing qualitative evidence.

5. Conclusions The findings from the reviewterm·mth suggest that child-centred careterm·dom is an emerging, ambiguous and poorly defined concept with no clear consensus about what constitutes child-centred careterm·dom. Although it seems antithetical to argue against child-centred careterm·dom, little robust evidence was identified that demonstrates the impact and benefit of child-centred careterm·dom. If child-centred careterm·dom is to be a sustainable and convincing model to guide practice and able to compete with other models or frameworks of care such as person-centred careterm·dom, it needs to establish robust evidence of its effectiveness, impact on children and their families, as well as the wider impacts (such as patient safety and cost effectiveness) on the healthcare system.

It is difficult to identify whether or if child-centred careterm·dom has developed over the period covered in this reviewterm·mth, as the term has been used loosely; a lack of definitional sources is at the root of this challenge.

Supplementary Materials The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/pediatric16010012/s1 .

Author Contributions Conceptualisation, B.C., K.F. and S.C.; methodology, B.C., K.F. and S.C.; validation, B.C., S.Y., K.F. and S.C.; formal analysis, B.C., S.Y., K.F. and S.C.; investigation, B.C., S.Y., K.F. and S.C.; writing—B.C., S.Y., K.F. and S.C.; writing—B.C., S.Y., K.F. and S.C.; visualisation, B.C., S.Y., K.F. and S.C. All authors have read and agreed to the published version of the manuscript.

Institutional Reviewterm·mth Board Statement As this was a scoping reviewterm·key, no ethical approval was required.

Informed Consent Statement Patient consent was not required as this was a scoping reviewterm·key.

Data Availability Statement No new data were created.

Conflicts of Interest The authors declare no conflicts of interest, beyond the fact that some of them are authors of papers that appear in the reviewterm·mth.

Funding Statement This research received no external funding.

Footnotes References Associated Data Supplementary Materials Data Availability Statement No new data were created.