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Abstract
Objective Explore children’s and adolescents’ (CADs’) lived experiences of healthcare professionals (HCPs).
Design Scoping review methodology provided a six-step framework to, first, identify and organise existing evidence. Interpretive phenomenology provided methodological principles for, second, an interpretive synthesis of the life worlds of CADs receiving healthcare, as represented by verbatim accounts of their experiences.
Data sources Five key databases (Ovid Medline, Embase, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus, and Web of Science), from inception through to January 2019, reference lists, and opportunistically identified publications.
Eligibility criteria Research articles containing direct first-person quotations by CADs (aged 0–18 years inclusive) describing how they experienced HCPs.
Data extraction and synthesis Tabulation of study characteristics, contextual information, and verbatim extraction of all ‘relevant’ (as defined above) direct quotations. Analysis of basic scope of the evidence base. The research team worked reflexively and collaboratively to interpret the qualitative data and construct a synthesis of children’s experiences. To consolidate and elaborate the interpretation, we held two focus groups with inpatient CADs in a children’s hospital.
Results 669 quotations from 99 studies described CADs’ experiences of HCPs. Favourable experiences were of forming trusting relationships and being involved in healthcare discussions and decisions; less favourable experiences were of not relating to or being unable to trust HCPs and/or being excluded from conversations about them. HCPs fostered trusting relationships by being personable, wise, sincere and relatable. HCPs made CADs feel involved by including them in conversations, explaining medical information, and listening to CADs’ wider needs and preferences.
Conclusion These findings strengthen the case for making CADs partners in healthcare despite their youth. We propose that a criterion for high-quality child-centred healthcare should be that HCPs communicate in ways that engender trust and involvement.
- paediatrics
- quality in health care
- qualitative research
Data availability statement
Data are available in a public, open access repository. All data relevant to the study are included in the article or uploaded as supplementary information. Extra data can be accessed via the Dryad data repository at http://datadryad.org/ with the doi: 10.5061/dryad.t76hdr817.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Strengths and limitations of this study
Our findings have advanced current evidence by providing a comprehensive overview of children’s and adolescents' (CADs') experiences of healthcare professionals, while providing a blueprint for the child-centred care conceptual model.
In addition to completing a scoping review in line with a published protocol, this article reports an interpretive phenomenological synthesis of the evidence base.
Restricting included articles to the English language limited the scope of our review.
Limitations in the metadata provided by primary researchers prevented subgroup analyses.
The subjectivity of interpretive synthesis is both a limitation and a strength: a limitation, because it does not meet quantitative, experimental standards of proof; and a strength because we used our subject position as clinicians to help fellow clinicians earn the trust of CADs.
Background
Children’s experiences, like patients’ experiences in general, are of fundamental importance in healthcare.1–3 Research consistently shows that favourable experiences are associated with a wide range of positive health outcomes, including adherence to recommended treatments, uptake of preventive care, and utilisation of healthcare resources.3 Exploring, understanding and adapting to patients’ experiences, particularly those concerning interpersonal communication, is the hallmark of patient-centred care (PCC), which is what patients ‘strongly want’.4 5 Accordingly, PCC has become the dominant ideology in healthcare design and delivery.6
In the case of children, however, it has proven more difficult to establish a model of PCC. Children and adolescents (CADs) are distinct from adults; they are developing physically, intellectually and emotionally, and they occupy different positions in society and by law.7 CADs, therefore, typically experience healthcare as part of a family unit, accompanied by parents or guardians who often act on their behalf. These factors affect the roles that CADs occupy within healthcare settings—how they interact and communicate with others—and predispose them to asymmetric relationships with adults. To address this, two specific theoretical models of care—family-centred care (FCC) and child-centred care (CCC)—have been developed for use in paediatric practice, based on the principles of PCC but incorporating modified conceptualisations of centredness.8
In FCC, the family is the central unit of care, with the aspiration of an equal partnership between healthcare professionals (HCPs) and families. FCC, which first originated in the 1950s, was an important conceptual advance because, up to this point, no framework existed to involve parents in their children’s care.7 Recent research shows, however, that even within the FCC framework, parents and professionals tend to predominate and CADs struggle to be true participants.9 In contrast, the newer concept of CCC situates CADs at the centre of healthcare practice, giving primacy to their voices and experiences. Rather than being guided by outsider perspectives of children’s best interests, CCC compels HCPs to consciously perceive and understand children’s conditions, experiences and priorities, as viewed through their eyes8 10 11:
[CCC] requires providers to critically consider the child’s perspective in every situation while ensuring collaboration with the family who the [child] is part of.8
While aspects of FCC and CCC may be pertinent in different clinical contexts,12 experts now advocate a move towards CCC,13 arguing that it better upholds values laid down by the UN Convention on the Rights of the Child and governing bodies (such as the General Medical Council),14 15 and could improve how CADs experience healthcare.8 13
Adopting the CCC approach, however, requires a major shift in thinking and practice. Research suggests that HCPs’ realities are incompatible with CADs’, with HCPs focused on prioritising tasks, ‘getting the job done’, and mitigating, rather than engaging with, CADs’ demands.16 Furthermore, HCPs’ communication strategies adopted for consulting CADs are largely underpinned and conceptualised by biomedical or psychosocial models, from the clinical gaze,17 with little or no input from CADs.18 19 And while CADs’ healthcare experiences overall are generally positive, large-scale studies have identified shortcomings in how HCPs interact and communicate,20–22 impacting on CADs’ ability to manage their conditions and participate in decision-making.23 HCPs, too, continue to find communicating with CADs challenging, supporting a change in thinking and practice.19
To achieve the vision of CCC, then, HCPs need greater insight into the experiences of sick children.11 This reflects a wider drive towards co-production (providers and service users working in equal partnership to effect change) in children’s healthcare;24 25 and also complements the present impetus to acknowledge and examine CADs’ own experiences, opinions, and priorities, within research,26 27 quality improvement,28–30 and standard setting.31 To date, however, most research and surveys examining experiences in paediatric settings have relied on parents’ accounts, while CADs have participated less, if at all.32 Nevertheless, the few studies that have explored CADs’ own experiential accounts have found them to be informative and distinct from parents’.23 33 At present, these accounts are widely dispersed, yet if compiled, synthesised, and interpreted, these could provide a rich account of CADs’ lived experiences of how they encounter HCPs.
This study aimed to explore how CADs experience HCPs within interpersonal interactions, in order to provide practitioners, organisations, and policy-makers with evidence that could promote child-centred communication. First, we conducted a scoping literature review to systematically gather evidence on CADs’ experiences of HCPs. Second, we interpreted CADs’ extracted quotations from the perspective of phenomenology. This well-established methodological tradition, grounded in philosophy, enables researchers to produce valid interpretations by examining and interpreting participants’ verbatim accounts of their lived experience.34 Finally, we organised the interpretation into a synthetic account of how CADs experience their interactions with HCPs.
Methods
Methodological orientation
Scoping review methodology has a pragmatic orientation in the sense that it sets out to map existing published evidence on a topic but it is adaptable in the sense that the usefulness of its procedures is not tied to any one specific epistemology (theory of the nature of knowledge).35–37 As in our previously published research,38 this review augments scoping review procedures with interpretive phenomenology. The latter has an ontology (theory of the nature of being) derived from the philosophy of Husserl, according to which the lived experience of research participants is a legitimate topic of qualitative inquiry. Interpretive phenomenology helps researchers respond reflexively to spoken or written words and arrive at valid, subjective interpretations. Phenomenologists typically take a reflexive stance that consciously sets aside strong a priori preconceptions while allowing their own experiences (such as, in our case, having experience of caring for sick children) to help them construct an informative interpretation.34 The quality of a constructivist interpretation is to be judged by its trustworthiness, authenticity and ability to catalyse action—which, in this case, would be to improve future children’s healthcare experiences.39
Study procedures
The research followed a published protocol (accessible at https://rdcu.be/b2FFk),40 which proposed to supplement traditional scoping review procedures with an interpretive synthesis, the distinction between which is explained in the previous paragraph. The scoping component followed the 6-step framework outlined by Arksey and O’Malley,35 Levac et al,36 and Colquhoun et al,37 adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews reporting guidance (included in online supplemental file 1).41
Supplemental material
Step 1: defining the research question
This was: ‘What is known about children’s and adolescents’ experiences of healthcare professionals, from their present perspective?’, the final phrase emphasising our commitment to CADs’ contemporaneous accounts of their experiences expressed in their own words, rather than parents’ descriptions or adults describing childhood memories.
Step 2: identifying relevant articles
We used the STARLITE mnemonic (sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, electronic sources) and designed a search strategy (summarised in table 1) to identify all published articles containing CADs’ experiences of HCPs expressed as first-person direct quotations.42 A subject librarian constructed a database search (included in online supplemental file 2), using the population, context and concept framework,43 combining the terms ‘children’ or ‘adolescents’, ‘healthcare’, and ‘experience’ (and synonyms), limiting it to English language articles, ‘qualitative research’, and ‘0 to 18 years’, and then running it on Ovid Medline, Embase, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus and Web of Science from inception to 11 January 2019. We included other articles found by searching relevant reference lists or found opportunistically.
Supplemental material
STARLITE summary of search strategy42
Eligibility criteria for article selection
Step 3: study selection
Refinement of selection criteria
As is customary in scoping review, the process iterated between searching, selecting, extracting data and refining the research question. To enhance the rigour of this process, and in keeping with our interpretive stance, we responded reflexively to the accumulating evidence, discussing our interpretations, and articulating a clear rationale for each refinement. All records were imported to Mendeley Reference Manager, duplicates removed, titles and abstracts screened against five screening questions (box 1), and full texts of those that screened positive reviewed against eligibility criteria.
Screening questions
Are the participants children and adolescents (CADs; <18 years)?
Is the study examining an aspect of health, illness, or healthcare?
Are CADs participating as recipients of healthcare?
Are participants aged >18 years excluded from the study?
Do children or adolescents describe experiences?
These criteria, at first provisional (table 2A), were progressively refined in response to the heterogeneity of evidence. Table 2B shows final criteria. GD led the process of first-screening, annotating, sorting and collating articles. MK and TD supported her by second screening 10% of records, discussing results, assessing articles whose eligibility was in doubt and responding to the often-imprecise details given by researchers. Any ambiguities (ie, lack of age ranges) during screening led to full-text review and a final decision about eligibility against criteria. To optimise validity of the selection process, GD rescreened all records and annotations after each refinement and, finally, after definitive criteria had been set.
Rationale for criteria
We included children up to and including 18 years because late adolescents are increasingly cared for in paediatric settings.44 45 Our age range conforms, also, with the United Nations’ influential definition of adolescence.46 We included articles that contained verbatim quotations irrespective of methodology. Judgement of methodological quality was not a criterion for three reasons: it is not standard practice in scoping reviews; it is notoriously difficult to judge qualitative research categorically47; and the interpretive synthesis used verbatim quotations, whose validity does not depend on what the primary researchers did with CADs’ words. Because authors often failed to report the exact age of patient participants they quoted, we excluded any study that included patient participants aged >18 years (see, eg, Tjaden et al48).
Step 4: Charting the data
GD and MK piloted a spreadsheet to chart study characteristics, contextual information, and all CADs’ verbatim quotations on 10 articles; this resulted in the final dataset shown in box 2, which GD then used to extract data on the remaining articles.
Data extracted
Study characteristics:
First author.
Year published.
Country of origin.
No. children and adolescents (CADs) participating.
Age range of CAD participants.
Male to female (or non-binary) ratio.
Other participants (eg, parents).
Methods.
Methodology (or analytical approach).
Contextual information:
Study focus (the experience being explored).
Health setting.
Health condition.
Length of healthcare encounter being explored.
CADs’ quotations:
All first-person direct quotations, where CADs are talking about HCPs.
Age and gender referenced to each quotation.
When key information was missing or unclear, we sought clarification from primary authors. All authors independently reviewed the extracted information for its fitness to address the aims and purpose of the study, subsequently conferring to optimise the validity of the dataset.
Step 5: collating, summarising, and reporting the results
We first analysed the basic characteristics of included studies. We then identified themes in the verbatim quotations following Braun and Clarke’s method of thematic analysis as defined by their checklist (included in online supplemental file 3).49 50 GD immersed herself in the data, reviewing all quotations on Microsoft Excel, using NVivo V.12 qualitative analysis software to support generation of codes and construction of themes.51 Other team members supported her interpretation, by reviewing quotations first individually, and then collectively. We systematically interrogated the data for themes that had meaning in relation to the research question, revising candidate themes periodically (with the aid of a visual thematic map) to ensure these were coherent, distinctive, complementary and relevant. The ensuing thematic structure had central concepts, which we used to organise subordinate themes and their associated codes. Throughout this process, we constantly compared our evolving interpretation against the original data, including a final ‘quality control’ check of the synthesis against all quotations.49 50
Supplemental material
In keeping with our interpretive stance, we used our different subject positions as paediatricians, a family doctor and an adult internist to interpret CADs’ words reflexively and arrive at ‘beyond-surface insights’, so that the themes were amenable to an additional stage of phenomenological synthesis.34 50 As we did this, the gamut of emotional content in CADs’ words became an increasingly compelling influence on our interpretation. CADs’ emotional expressions tended to have quite distinct ‘valence’ (defined as the attractiveness (positive valence) or averseness (negative valence) of the emotions described) which linked in recurring ways to HCPs’ reported behaviours.52 53 So, for example, a HCP who related well to a child might engender trust, while an HCP who related poorly might engender mistrust.
While crude dichotomies between positive/negative emotions and behaviours do not reflect the subtlety of interpretive research, links between these contrasting behaviours were so clearly present that they offered a parsimonious way of presenting our results. The results section uses the terms ‘favourable’ and ‘unfavourable’ to specify what are, in reality, nuanced polarities. To epitomise these important themes in ways that could encourage HCPs to emulate favourable behaviours, we present predominantly favourable behaviours, but provide negative counter-examples to emphasise the breadth of CADs’ experiences. As in previous research,54 we used CADs’ own words, as far as possible, to construct a narrative of findings that was as true as possible to the phenomena experienced and narrated by children. We use the wording ‘HCPs did X’ as a shorthand for the more correct wording, ‘CADs experienced HCPs as doing X’.
Step 6: stakeholder consultations
As recommended by Levac et al,36 GD, AT and RC (with research ethics and governance approvals) recruited CADs aged 8–16 from inpatient wards in the Royal Belfast Hospital for Sick Children to two focus groups whose aim was to consolidate and elaborate on findings. Participants and parents chose whether parents should attend. We presented candidate themes along with exemplar quotations and facilitated discussions, asking participants to comment on provisional findings and provide suggestions for practice. We audio-recorded sessions and transcribed recordings verbatim. We reviewed transcripts alongside the provisional findings to authenticate, build on, and summarise a final narrative of results. Participants’ identities are pseudonymised in the results section.
Patient and public involvement
The essence of this research was to involve children, although as expressed verbatim by other researchers. The stakeholder consultation further fulfilled the patient and public involvement component of the research by ensuring findings disseminated were intelligible and relevant.
Results
We identified 1359 articles, excluding 1015 by screening and 245 by reviewing full texts, and categorised reasons for exclusion on a PRISMA flow diagram (shown in figure 1).
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. CAD, child and adolescent.
Overview of included studies
Table 3 presents an overview of included studies (n=99), published between 1992 and 2018. In total, 4448 CADs, aged 11 months to 18 years, participated. Most studies included 8–50 participants (n=73), aged 7 or older (n=70), and used interviews only (n=64). Studies commonly included CADs with chronic and potentially debilitating or life-threatening conditions (such as asthma and cancers), explored long-term experiences (over months to years), and focused on hospital care. Further descriptive findings and figures are presented in online supplemental file 4.
Supplemental material
Study characteristics
Children’s and adolescents’ experiences
Six-hundred and sixty-nine quotations referred to CADs’ experiences of HCPs, most of whom were doctors or nurses. CADs also spoke about their experiences with counsellors, psychologists, social workers and dentists. CADs’ ages (available for 397 quotations), ranged from 5 to 18 years (average 13); male and female participants were equally represented (see online supplemental file 5). All quotations extracted are available at https://doi/10.5061/dryad.t76hdr817; quotations presented below are cited in online supplemental file 6.
Supplemental material
Supplemental material
CADs’ favourable experiences were of HCPs forming trusting relationships and involving them in healthcare discussions and decisions and their unfavourable experiences were generally towards the opposite pole.
Forming trusting relationships
Their nature
Being in a trusting relationship was feeling a ‘bond’, having an ‘emotional attachment’, or having a ‘best friend’. CADs and HCPs knew each other, could ‘relate to’ each other, and really understood each other. There was openness, transparency, and there was trust. CADs trusted in HCPs to provide ‘good care’, knowing they would do everything necessary, and do it right.
Their origins
At first, HCPs were ‘strangers’; CADs did not know the HCPs, who they were, and how they were. HCPs, likewise, did not know CADs, their histories, or their personalities. Repeated contact and dialogue built and reinforced relationships: ‘As time passed, […] we created that bond.’
HCPs engendered trusting relationships by demonstrating positive attributes, including being able to empathise. CADs trusted in HCPs who were ‘very smart’, ‘experienced’, ‘[knew] what to do’, ‘[took] care’, and did ‘everything the best they [could]’. They trusted HCPs who were ‘truthful’, ‘100% with you’, and ‘just [told] you straight up.’ Such HCPs did ‘not tell children any lies’; ‘nothing [was] hidden’. CADs built trusting relationships with HCPs who were ‘really nice’, ‘nurturing, caring, and helpful people who [were] there for you’, and had a ‘good sense of [humour]’.
HCPs related to CADs by understanding them: ‘she knew what I was talking about, she knew what I was feeling, she knew how I was feeling.’ HCPs ‘took time to get to know’ CADs and had ‘real conversations, not just [HCP]-patient discussions’, in which they shared experiences and got to know each other personally. CADs could better relate to HCPs who were ‘down to earth’ and had ‘a lot in common’.
Their effects
Trust was vital: ‘you gotta have trust.’ Trusting relationships improved CADs’ healthcare experiences by promoting positive emotions. CADs felt ‘satisfied’ and ‘happy’. They enjoyed their time with HCPs and had ‘good memories’. CADs were more able to ‘open up’ or ‘tell anything’ to HCPs whom they trusted. Trusting relationships gave CADs hope that HCPs could ‘cure [the] illness’ or help lessen the pain. CADs who trusted HCPs submitted themselves more willingly to recommended treatments: ‘whatever happens I let them [HCPs] do what they have to do to help me get better.’ And they consciously chose to remain with or seek out HCPs they trusted. CADs admired trustworthy HCPs: ‘individually [they’re] all heroes.’ And they aspired to be like them: ‘Because you can save people […] I’m going to be a children’s doctor.’
Being involved in healthcare discussions and decisions
The nature of involvement
CADs who were fully involved in healthcare discussions felt they knew everything; ‘everything [was] always clear’ to them. They had a seat at the table to discuss issues that affected them and felt acknowledged as key stakeholders. CADs worked ‘together’ with HCPs and parents; they felt as though they were respected, taken ‘seriously’, and treated ‘as an equal’.
Its origins
HCPs involved CADs by including them in conversations, sharing information, providing opportunities to ask questions, taking time to answer, and listening to their wider needs and preferences. HCPs who promoted involvement used simple words, communicated in a timely way, gave accurate information at the right pace, and explained things so that CADs understood. These HCPs brought CADs ‘into all the conversations’ by talking to CADs ‘as much as they [talked to the] parents’. Parents facilitated CADs’ involvement in the presence of HCPs or afterwards by ‘[breaking] the words down in an easier explanation’. HCPs promoted participation by ‘listening’ to and respecting CADs’ requests: ‘I tell them I don’t want this and they … understand’. For more complex decisions, CADs took a joint approach: ‘me because I know my own body, my parents because they know what’s best for me […] and the paediatrician because they are qualified.’
Its effects
CADs viewed involvement as ‘most important, as in the end it is about [them]’. CADs enjoyed being involved; it was ‘brilliant’, and they looked forward to their next visit. CADs were more satisfied with healthcare; they found it ‘interesting and informational’. Getting to ‘learn something new’ made them feel ‘comfortable and confident’. CADs could ‘make better decisions’ because they were ‘fully informed’. This promoted self-advocacy and self-efficacy: ‘I’m asking the doctor more questions myself than having my Dad do it.’
Not forming trusting relationships or being involved
CADs described unfavourable experiences, which broadly mirrored favourable ones. For instance, trust was undermined by HCPs getting things wrong, being ‘nasty’, and not ‘[seeming] that concerned’. HCPs being unfamiliar to CADs because they were ‘too busy’ or because HCPs or CADs moved to other services prevented trusting relationships forming. HCPs excluded CADs by using ‘big words’, speaking too fast, or telling them nothing, so that CADs could not understand. HCPs neglecting to ask CADs or asking in a tokenistic way prevented them ‘having a say’: ‘they [HCPs] might ask me ‘is that ok’ […] in such a way that I kind of feel like I don’t have any other option but [to] agree with them’. HCPs and parents side-lined CADs by talking behind the curtains so CADs could not hear or sticking them ‘in the middle’ of a conversation where they could not interrupt. Some parents told CADs to keep quiet or dominated conversations: ‘you try to say something but then your parents just say shhhhh! […] They come out and say, […] did you understand that, you say no, they say, you should have asked them, and then you say, oh you didn’t let me, they say rubbish!’
Not trusting people or understanding what was happening made CADs fearful. HCPs who made CADs feel ‘rejected’ and objectified, ‘like a piece of machinery’, enraged them. CADs found it ‘hard to talk’, disengaged in conversations, and left the talking to their parents. Not trusting in HCPs or being uninvolved meant some CADs hated hospital or clinic, they objected to attending, and sought information or guidance from other sources.
Stakeholder consultations
Two CAD inpatients participated in each of two focus groups (3 females and 1 male, aged 11–15 years) lasting 67 and 93 min respectively. Their medical conditions included type 1 diabetes, coeliac disease, spina bifida, and spinal/brain surgery. No parents attended. Three authors (GD, AT, and RC) attended both consultations and a hospital play specialist attended the first consultation. Participants identified with the provisional findings and elaborated on them (table 4). All wanted some degree of involvement in their own care though the amount of information and level of participation they wanted depended on their age, what was being discussed, and individual preferences. Box 3 offers take-home messages for HCPs.
Stakeholder findings: focus group participants’ experiences mapped to overarching themes
Take-home messages for healthcare professionals (HCPs)
Focus group participants provided take-home messages about how HCPs, could deliver high-quality child-centred care:
‘Explain.’ (Laura, FG2, line 409) ‘Explain it in a child friendly way.’ (Sarah, FG2, line 411) ‘Because if the child is really young it has to be explained in a different way. At an age you’re able to understand [or HCPs will] scare them.’ (Sarah, FG2, line 658–663)
‘They should explain what they are going to do before they do it, and like(…)always say who they are and what they’re gonna do(…)[and at] what time(…), and explain what was gonna happen and why(…).’ (Rachel, FG1, line 498–510)
‘I think just tell everyone together.(…)Because like telling your mum and dad first you’ll see the expression on their face and then you’re already gonna know.’ (Laura, FG2, line 651–654)
‘Always like ask [children] do you have any questions(…)ask [to check understanding].’ (Sarah, FG2, line 388 & 416–417)
‘Whenever [children] come in, try and treat them like nicer, em.’ (Darren, FG1, line 992) ‘Like treat them the same as everybody else so they all feel the same.’ (Rachel, FG1, line 993)
Note: Rachel, Laura, Sarah, and Darren are pseudonyms (participants aged 11–15 years)
Discussion
CADs’ experiences were influenced by HCPs forming relationships and involving them: engendering trust and involving CADs satisfied them, made them happier when undergoing procedures and treatments, and better able to confide. HCPs did this by being personable, wise, and sincere, relating at a personal level, bringing CADs into conversations and decisions, and speaking in child-friendly ways. Conversely, not relating to or involving CADs, communicating ineffectively by using inappropriately technical language or positioning CADs as ‘piggy-in-the-middle’ between HCPs and parents resulted in CADs being fearful, angry, resistant and disengaged.
These findings add to earlier studies, which identified intimate relationships,55–57 trust55 and involvement,48 58 as important ingredients of caring well for CADs. They corroborate a recent systematic review of decision-making experiences, which found that HCPs (and parents) made adolescents feel fearful, anxious and depersonalised when they withheld information or denied involvement.58 Parents had a significant influence on HCPs’ experiences in our study too, by facilitating or impeding communication. Overcoming parental primacy, over-involvement, over-protectiveness,48 55 58 and wishes to withhold information remains a substantial challenge for HCPs.55
Strengths and limitations
Our synthesis advances understanding of CADs’ experiences of HCPs because of its comprehensiveness, analysis of interrelationships between the nature, origins and effects of trust and involvement, and its advocacy for CADs’ autonomy. It provides a blueprint for CCC, which has, until now, largely depended on theory and expert consensus rather than empirical evidence.8 Our findings endorse the concept and importance of CCC, while showing how much work is needed to put this principle into practice. Our review was innovative in the way it used phenomenology, a theory that is highly relevant to the topic, to inform a rigorous interpretive synthesis. This allows us to go beyond cataloguing publications and draw empirically supported conclusions about how HCPs could care more effectively for CADs. This, we suggest, is a significant contribution to the scholarship of evidence synthesis.
As with most qualitative syntheses, we present a broad overview, whose findings are potentially transferable across a range of clinical contexts. We took an iterative approach to article selection and ensured adequate time for rigorous interpretive analysis; while some evidence may have been published since we searched the databases, this is an inherent limitation in research that goes to such lengths to analyse a huge evidence-base and synthesise information. We doubt that this materially affects our conclusions since the nature of human relationships are unlikely to change in 12 months. Consulting with stakeholders, while obviously desirable, is often omitted from scoping reviews.59 Our consultation sample was admittedly small and relatively homogenous, but participants spoke informatively about their experiences, which helped consolidate and authenticate the findings.
Our conclusions are susceptible to both publication and interpretation bias because more emotive material tends to attract greater attention. This limitation is partially offset by our rigorous adherence to methodological standards. Another limitation, imposed by the non-specific nature of studies and inexplicit reporting of metadata by primary authors, is that we could not analyse how different types of HCP, or participants’ ages or illnesses, affected CADs’ experiences. Restricting the scope to English language publications excluded non-English speaking children from distinct cultural groups. This is an important topic for future study.
Implications for policy, research and practice
Our findings add impetus to the movement to design, deliver and further characterise child-centred healthcare,60 which has important implications for HCPs, educators, researchers and policy-makers. Our empirical augmentation of this conceptual model supports these initiatives. To achieve the vision of CCC, there is a need for communication strategies, training, assessments and feedback (from CADs, specifically) at both the undergraduate and postgraduate levels of health professions education. Further research will be needed to address the long-term sustainability and effectiveness of CCC. Evidence on how healthcare policy, practice and legislation can influence child-centred approaches is also long overdue. Further research could also examine how age, illness, gender and the cultures of different professions influence the drive for CCC. Further implications for practice include the need for HCPs to examine how professional boundaries between themselves and CADs are characterised, and consider how best to respect CADs’ preferences when it goes against ‘best practice’.
Data availability statement
Data are available in a public, open access repository. All data relevant to the study are included in the article or uploaded as supplementary information. Extra data can be accessed via the Dryad data repository at http://datadryad.org/ with the doi: 10.5061/dryad.t76hdr817.
Ethics statements
Ethics approval
Ethical approval for focus groups was obtained from the Office for Research Ethics Committees Northern Ireland (reference: 19/NI/0070), while research governance was obtained from the Belfast Health and Social Care Trust, Northern Ireland. Queen’s University Belfast (QUB) sponsored the study in accordance with the UK Policy Framework for Health and Social Care.
Acknowledgments
The authors would like to acknowledge Richard Fallis, for his assistance with the search strategy, Richard McCrory, for his advice in the early stages of this review, and Jenne McDonald, for attending the first stakeholder consultation.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @gaildavison9, @richardlconn, @ProfTimD
Collaborators None.
Contributors GD conceived the review, sought approvals, secured funding, led the execution and led the write-up. GD, AT and RC completed the focus groups. MK, RC, AT and TD assisted with data selection, analyses and manuscript revision. All authors read and approved the final manuscript.
Funding This work was funded by the Charitable Funds Department, Royal Belfast Hospital for Sick Children, by award of a PhD Research Fellowship, received by GD. Grant number 71817005. Funders had no direct involvement with conceptualisation or completion.
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Competing interests None declared.
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