A systematic evidence synthesis of interventions to engage children and young people in consultations about their long-term conditions

Abstract

Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases and of the grey literature. Two reviewers independently screened the results, extracted data and assessed the quality of the studies using a validated and reliable checklist. A narrative synthesis of mixed method data was undertaken. Twelve studies were included in the review. Interventions used to engage children and young people mainly focused on face-to-face outpatient consultations, with an emphasis on diabetes and asthma. Most of the interventions focused on either improving health professionals’ communication skills or encouraging children’s and young people’s engagement through providing condition-related information or a structured way to be included in consultations. Fewer interventions were child-led or directed towards developing children’s and young people’s skills to become key reporters of their condition. This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations.

Keywords

Children consultations engagement long-term condition participation systematic review

Introduction

The words used to describe children’s involvement, participation and engagement in healthcare vary across time, settings, cultures and contexts. This diversity is important as the terms used can imply different levels of engagement ranging from a more passive involvement to a more agentic form of participation. In this review, we purposively selected the term engagement to reflect that we wanted to include the diversity of children’s engagement within healthcare consultations. The term also underpins other reviews within this field (Curtis-Tyler, 2011; Feenstra et al., 2014) and is used within contemporary documents within the United Kingdom, for example, National Health Service (NHS) Confederation (2011) involving children and young people in health services.

It is important for children and young people to actively engage in their healthcare (American Academy of Pediatrics, 2012; Department of Health, 2012; Moore and Kirk, 2010; The Kings Fund, 2013), this engagement may take different forms depending on various factors such as children’s developmental level and their previous healthcare experiences. Children and young people have repeatedly expressed the value of being involved in their healthcare (Coyne, 2008; Weil et al., 2015) and specifically in relation to consultations (Miller, 2009; van Staa, 2011). Evidence shows that active engagement in consultations can facilitate knowledge acquisition (Curtis-Tyler, 2011) and the ability to communicate choices and decisions (Feenstra et al., 2014). Despite this children and young people can be marginalized in consultations with health professionals and can find it difficult to have their voice heard above those of the adults (parents, health professionals) present (Coyne et al., 2006; Beresford and Sloper, 2003; Savage and Callery, 2007; Tates and Meeuwesen, 2001; van Staa, 2011; van Dulmen, 1998). This triadic communication between health professionals–parents–children/young people can often leave children and young people feeling excluded and struggling to become engaged in consultations and have the opportunity to be heard and listened to (Cahill and Papageorgiou, 2007; Callery and Milnes, 2012; Raaff et al., 2014; Savage and Callery, 2007). A recent review which focused on triadic communication between medical providers, parents and children (Kodjebacheva et al., 2016) identified that the majority of evidence focuses on improving parent engagement during healthcare interactions. If children are not given opportunities to develop their communication and decision-making skills within healthcare contexts, they may struggle when they transition to adult services (van Staa, 2011), this in turn can lead to lower levels of adherence to health regimens (Gardiner and Dorkin, 2006; Levetown, 2008) and lower levels of satisfaction and engagement with healthcare services (Ambresin et al., 2013). Evidence has demonstrated that interventions can have a role in improving patient’s involvement in consultations (Henselmans et al., 2013), their ability to ask questions (Dimoska et al., 2008; Smets et al., 2012) and engage in decision-making (Feenstra et al., 2014), but most of the interventional research within this field is based on adults (Gaston and Mitchell, 2005) and the evaluation of targeted interventions to help children’s and young people’s engagement during consultations is lacking (Cunningham and Newton, 2000; Hawthorne et al., 2011; Milnes et al., 2013).

There has been no systematic investigation of the current evidence which surrounds interventions, approaches or methods to enhance the engagement of children and young people in medical consultations about their long-term conditions. There is a need to systematically review the evidence regarding interventions to engage children and young people in their consultations. This review aimed to focus on interventions which had been subjected to evaluation in relation to effectiveness, influence or worth. Long-term conditions within this review refers to conditions which cannot be cured but can be controlled by medication and therapies with a longevity of six months or more (Department of Health, 2012). The parameters of the intervention are defined within our inclusion criteria section in the ‘Methods’ section.

Methods

A systematic review was undertaken to locate, appraise and synthesize evidence of interventions to engage children and young people in healthcare consultations about their long-term conditions. The objectives were (1) to clearly define and critically examine the current evidence about which methods/interventions are designed to engage children and young people in healthcare consultations about their long-term conditions and (2) to explore what the evidence tells us about which methods are the most successful/effective in engaging children and young people in their healthcare consultations. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for systematic reviews (Moher et al., 2009).

Search strategy

A comprehensive search strategy was undertaken in the following databases: Medline, Cinahl, PsychInfo, British Nursing Index, ChildLink, The Cochrane Library, Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports and Web of Science. All searches were initially undertaken in February 2016 and updated in October 2016. No date or language restrictions were applied to the searches. Both thesaurus and free text terms were searched. Key terms searched include consultation terms (e.g. encounter, communication and conversation), health personnel terms (e.g. nurse, doctor and professional), child terms (e.g. child, adolescent and young person) and involvement terms (e.g. engagement, interaction and involvement). Truncation and proximity operators were employed to increase the sensitivity of the search (see Supplementary material for full Medline search).

In identifying innovative and emerging practice, it was essential that grey literature was searched, since it is likely that literature relevant to this review may not be in the peer reviewed published domain. Grey literature was identified via Open Grey and Google. In addition, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, National Institute of Health Research portfolio and the Department of Health websites were scanned for studies, conference papers and publications. Searches for grey literature were undertaken in February 2016 (and updated in January 2017).

Inclusion criteria and study selection

Studies were included in the review if they fulfilled all of the criteria identified in Table 1.

Table 1.

Inclusion criteria for studies included in the review.

	Inclusion criteria	Exclusion criteria
Participants	Children and young people with a diagnosis of a long-term condition (conditions which cannot be cured, but can be controlled by medication and therapies with a longevity of six months or more (Department of Health, 2012))	Studies conducted in an adult population or where it was not possible to separate out the child data (aged 5–18 years of age)
Participants	Children and young people aged 5–18 years of age	Children or young people outside of the inclusion age
Interventions	Intervention/method (of any type) designed to engage children and young people in a two-way planned interaction/consultation with any health professional about their long-term condition. Engagement was defined as a child or young person being involved, participating or actively concerned during the consultation	Interventions which were not focused on engagement
Design	Evaluation studies to assess or appraise an intervention for effectiveness or worth on children’s engagement	Studies reporting on outcomes other than the engagement of children. Studies describing the use of an intervention in practice with no evidence of evaluation.
Design	Empirical research	Editorials, opinion pieces
Language	English language	Other languages

Titles and abstracts were imported into http://Covidence.org (a specific system for systematic reviews designed by Cochrane) for screening. A two-stage approach to screening was adopted. Stage 1 involved the screening of titles and abstracts. References that clearly met the inclusion criteria, or in instances in which the relevance of the study was unclear, were taken forward to the next stage. Stage 2 involved the full-text screening of the studies against the inclusion criteria. We attempted to obtain full-text articles as this was seen as important in the quality appraisal process. We contacted authors directly to obtain the full-text articles not readily available via other sources. In order to minimize selection bias, two reviewers were involved in both stages of the screening process. If consensus could not be agreed or uncertainty existed, a third review was involved in screening.

Data analysis and synthesis

To provide consistency and transparency of the review process, a data extraction form was piloted and used to extract data specific to the aims and objectives of the review. The Mixed Methods Appraisal Tool (MMAT) (Pluye et al., 2011) was used to assess the quality of the included studies. This tool was selected as it is a validated and reliable tool for the assessment of qualitative, quantitative and mixed methods studies for inclusion in a systematic review (Souto et al., 2015). At least two reviewers independently extracted the data and quality assessed the included studies. The quality assessment of the included studies is detailed in Table 2. Due to clinical and methodological heterogeneity, a narrative approach to data synthesis was undertaken.

Table 2.

The Mixed Methods Appraisal Tool (MMAT) quality assessment synopsis table.

Type of study	Methodological quality criteria	Qualitative					Quant RCT	Quant non-rand.	Quant descript		Mixed Methods
Type of study	Methodological quality criteria	Berger (1980)	Chin et al. (2014)	Husted (2014)	Milnes et al. (2013)	Petersson et al. (2016)	Gregory et al. (2011)	Vatne et al. (2013)	Bejarano et al. (2015)	Rijswijk et al. (2016)	Franklin et al. (2006, 2007,2008)	Haze and Lynaugh (2013)	Yoo et al. (2015)
Screening questions	Are there clear qualitative and quantitative research questions (or objectives) or a clear mixed methods question (or objective)?	No	No	Yes	Unclear	Yes	Yes	Yes	Yes	Yes	Yes	Unclear	Yes
Screening questions	Do the collected data allow address the research question (objective)?	No	Unclear	Unclear	Yes	Yes	Yes	Yes	Unclear	Yes	Yes	No	Yes
1. Qualitative	1.1. Are the sources of qualitative data (archives, documents, informants, observations) relevant to address the research question (objective)?	Unclear	Unclear	Yes	Yes	Yes					Yes	Unclear	Yes
	1.2. Is the process for analysing qualitative data relevant to address the research question (objective)?	Unclear	Unclear	Yes	Yes	Yes					No	Unclear	Unclear
	1.3. Is appropriate consideration given to how findings relate to the context, for example, the setting, in which the data were collected?	Unclear	Unclear	Yes	Unclear	Unclear					No	Yes	No
	1.4. Is appropriate consideration given to how findings relate to researchers’ influence, for example, through their interactions with participants?	Unclear	Unclear	Yes	Unclear	Unclear					No	Unclear	No
2. Quantitative randomized controlled (trials)	2.1. Is there a clear description of the randomization (or an appropriate sequence generation)?						Yes				Unclear		Unclear
	2.2. Is there a clear description of the allocation concealment (or blinding when applicable)?						Unclear				Unclear		Unclear
	2.3. Are there complete outcome data (80% or above)?						Unclear				Yes		Unclear
	2.4. Is there low withdrawal/drop-out (below 20%)?						Yes				Yes		Unclear
3. Quantitative non-randomized	3.1. Are participants (organizations) recruited in a way that minimizes selection bias?							No
	3.2. Are measurements appropriate (clear origin, or validity known, or standard instrument; and absence of contamination between groups when appropriate) regarding the exposure/intervention and outcomes?							Yes
	3.3. In the groups being compared (exposed vs. non-exposed; with intervention vs. without; cases vs. controls) are the participants comparable or do researchers take into account (control for) the difference between these groups?							Yes
	3.4. Are there complete outcome data (80% or above), and, when applicable, an acceptable response rate (60% or above), or an acceptable follow-up rate for cohort studies (depending on the duration of follow-up)?							No
4. Quantitative descriptive	4.1. Is the sampling strategy relevant to address the quantitative research question (quantitative aspect of the mixed methods question)?								Unclear	Yes
	4.2. Is the sample representative of the population understudy?								No	Yes
	4.3. Are measurements appropriate (clear origin, or validity known, or standard instrument)?								Unclear	Yes
	4.4. Is there an acceptable response rate (60% or above)?								No	Yes
5. Mixed methods*	5.1. Is the mixed methods research design relevant to address the qualitative and quantitative research questions (or objectives), or the qualitative and quantitative aspects of the mixed methods question (or objective)?										Yes	Unclear	Yes
	5.2. Is the integration of qualitative and quantitative data (or results*) relevant to address the research question (objective)?										Yes	Yes	Yes
	5.3. Is appropriate consideration given to the limitations associated with this integration, for example, the divergence of qualitative and quantitative data (or results*) in a triangulation design?										Yes	Unclear	Unclear

*Criteria for the qualitative component (1.1 to 1.4), and appropriate criteria for the quantitative component (2.1 to 2.4, or 3.1 to 3.4, or 4.1 to 4.4) applied for mixed methods studies.

Results

The search located 14,265 references. Three hundred and thirty-six references were retrieved for full-text analysis of which 14 papers (12 studies) met the inclusion criteria for the review (see Figure 1 for PRISMA flow diagram). The included papers are detailed in Table 3. Many of the papers were excluded as they only described the use of an intervention in practice with no evidence of evaluation. The results section of the paper is presented in two sections to reflect the main objectives of the systematic review; what methods and interventions are used to engage children and young people in consultations and which methods are effective in engaging children and young people in their consultation?

Figure 1.

PRISMA flow chart.

Table 3.

Summary chart of included studies.

Author/year/country of study	Study design	Participants age and condition/s	Setting and sample size	Intervention type and focus	Intervention delivered by and duration	Data collection methods (measurement/assessment tool/s)	Outcomes assessed/acceptability	Results/findings	Limitations ‘author’	Recommendations/comments ‘xxxx’ = direct author recommendations
Qualitative design
Berger (1980), USA	Case reports	8–10 years 1 × sore throat + high fever, 2 × psychological	General paediatrics N = 3	The Winnicott Squiggle game Child focus	Doctor Duration unclear	None	Whether discussion between the child and doctor was prompted	Serve as a ‘springboard’ for discussion	‘The drawings must not be over interpreted, but rather serve as a springboard for discussion with the child’.	‘Squiggle drawings provide important insights into a child’s world’.
Chin et al. (2014), Malaysia	Case reports	10–15 years 1 × osteosarcoma 1 × liver failure 1 × rhabdomyosarcoma	Palliative care N = 3	Presentation of 10 different small chairs to a child with question prompts of why a child chooses a particular chair to sit in. Child focus (family present)	‘Facilitator’ Duration unclear but within one interaction	None	How the chairs promoted expression of feelings	The chairs enabled children to ‘express their inner feelings and thoughts more openly, hence improving communication between patients, family and doctors’	Recognize that at the least the chairs are harmless, unthreatening day-to-day toys.	The chair-inspired model may serve as a tool to ‘understand the inner thoughts of children regarding physical, psychosocial or spiritual issues’.
Husted et al. (2014), Denmark	Qualitative realistic evaluation	13–18 years Type 1 diabetes for a year or longer with poorly controlled diabetes (HbA1 > 64 mmol)	Two paediatric diabetes outpatient clinics Purposeful sample of 13 adolescents, 17 parents and 8 HCPs from a group of n = 37 randomized to receive the GSY intervention	GSD-Y is a shared decision-making and mutual problem-solving method involving semi-structured reflection sheets (R-sheets, completed by parents and children prior to outpatient visit) and advanced communication skills. Eight GSD-Y sessions. Adolescents had one session alone with the HCP to facilitate conversation about confidential personal affairs. Parents had two sessions on their own with HCP. Young people focus mainly but parents present and two sessions focused on parents.	Adolescents’ usual physician, nurse or dietician during OPD appts. 30–45 minutes	37 observed, audio-recordings of GSD-Y intervention during outpatient visits N = 11 adolescents N = 12 parents N = 8 HCP 21 audio-recorded semi-structured interviews conducted 6mths after adolescents had completed their 8th session Adolescents N = 7 Parents n = 11 HCP n = 7	Development of life skills	All participants emphasized importance of the R sheets. Increased ability of HCP to focus on difficulties perceived as important by adolescents rather than just providing information. Due to complex family circumstances, adolescents’ ability to develop life skills occurred differently. Adolescents demonstrated improvements in: Developing relatedness with HCPs and parents. The R sheets encouraged adolescents to actively participate Becoming decision makers in their own lives – the R sheets helped them to talk more openly and honestly with HCPs Growing personally. The focused communication and independent reflection helped them gain insights into their internal conflicts between life and diabetes.	Only 5 of the 11 triads completed all the sessions for interviews. Data collection occurred six months after the final GSY session (so as not to influence the quantitative data collection elements of the RCT).	GSD-Y was effective in adolescent-parent-HCP triads in improving the life skills of adolescents with T1D. Use of GSD-Y made outpatient appointments more personalized, meaningful and improved the life skills of adolescents with T1D.
Milnes et al. (2013), UK	Pilot trial – qualitative exit interviews	14–18 years Asthma	Planned asthma consultations in three primary care trusts N = 24 young people and 9 practice nurses	Written paper leaflet ‘preconsultation guide’ for young people for use with practice nurses (developed through nominal group techniques with young people based on the application of a health behaviour change theory). Includes examples of questions to ask and encouraging statements. Young people focus	Practice nurses Duration not reported	Semi-structured qualitative interviews with young people at three months post-intervention. Data analysed using Framework Method	Acceptability and usability	‘The young people highlighted the most useful components of the guide are the peer written sections’. These were reported as reassuring and encouraged participation in consultations. ‘Many young people reported increased confidence to ask questions in future consultations’ Some young people continued to report a lack of confidence in communicating with the practice nurse	Only 12 young people had actually used the guide in consultations. Others were asked to talk through the guide and how useful it would be. No information is provided on who conducted the interviews or whether parents were present. Interviews occurred three months after the guide was used in clinic.	Future research should explore options and outcomes of facilitated interventions.
Petersson et al. (2016), Sweden	Qualitative	10–17 years Chronic health condition for at least three months. (kidney disease, diabetes type, rheumatic disease)	Four outpatient Paediatric Departments in three different hospitals (one University hospital and two Regional hospitals) N = 25	HRQOL web-based questionnaire built on DISABKIDS Chronic Generic Measure (DCGM-37). Questionnaire comprised of six dimensions – independence, inner strength, social inclusion, equality, physical ability and treatment. Young people focus	HCPs 120 min instructional session for HCPs on HRQOL and DISABKIDS. Young people answered the HRQOL on an iPad and then discussed these during a normally planned OPD appt.	Qualitative semi-structured interviews. All interviews taped and transcribed. Two researchers analysed the data using qualitative content analysis.	Young people’s experiences of the structured assessment	Two main findings: The child’s own insight about their own health constituted motivation for change and the encouragement when HCPs requested and discussed results. Encouragement from HCPs by discussing the results of the assessment. Children expressed the importance of sharing their results and need for feedback.	Convenience sample No data are available on whether the HRQOL discussion increased the standard OPD appt. length of time	Recommend that HCPs discuss HRQOL results ‘Using coloured overviews for HRQOL results can promote children’s insights about their health and encourage discussion of outcomes with HCPs’.
Quantitative (RCT) design
Gregory et al. (2011), UK	Cluster RCT	4–15 years (self-report data only collected for children aged >7 years) Diabetes type 1 (diagnosed at least 12 months)	Secondary care N = 693 children and young people recruited to the RCT N = 356 children and young people received the talking diabetes intervention. N = 185 children/young people completed all the questionnaires	Talking diabetes programme (psychosocial intervention. The programme involved a modified consultation planned to run over 12 months. Consultation was modified in two ways. Paper pad of sheets for young people to record/complete prior to consultations and a training programme for health professionals (web-based design and two away days). HCPs focus (although the pad was completed by the child or young person).	Children and young people Underpinned all clinic appointments over a 12-month period	Measurements taken at baseline, following first clinic visit and after 1 year. Questionnaires: PedsQQL, PAID, Diabetes mismanagement Emotions measured using tool developed specifically for DEPICTED. Five-point scale (fed up, excited, guilty, good, worried). Semi-structured interviews with HCP Audio-recording of consultations.	Blood samples (Hb1ac) Diabetes specific quality of life Patient enablement Inventory (young people >11 years) Emotions prior to clinic visit (children > 7 years old) Diabetes continuity of care scale (perceptions of diabetes team) (young people >11 years) Healthcare climate questionnaire PAID score Emotions DEPICTED scale Self-care (mismanagement, importance, confidence) Discrete choice experiment (young people >12 years) of the main attributes of a clinic consultation	No significant difference No significant difference Intervention group scored higher than control in short-term, but no significant difference at 12-month follow-up No significant difference No significant difference No significant difference No significant difference No significant difference No significant differences The DCE ‘ranking exercise showed no significant differences between control and intervention groups’ and the important attributes of a consultation.	Trial arm allocation knowledge bias	Training in psychoeducational consultations skills for whole teams does not improve glycaemic control, the key attributes of a diabetes consultation or enablement scores in young people with diabetes over one year.
Quantitative (non-RCT) design
Vatne et al. (2013), Norway	Sequential RCT	7–13 years Heart disease	Outpatient consultations in a large hospital N = 122 (n = 75 control group, n = 47 intervention group) Data analysed on: N = 42 control group and n = 42 intervention group	Sisom: an interactive computer-based communication tool. Covers 71 physical, emotional, social, daily-life, school-related and family-related issues. It ‘uses spoken text, sounds, animation and intuitively meaningful metaphors and pictures to represent symptoms and problems’. Child focus	Child given the tablet computer 30 minutes prior to the clinic appointment. Summary sheet printed off from the child’s use of Sisom and given to child, parent and HCP. 30 minutes prior to outpatient appointment.	All consultations were video-taped. Content analysed using modified version of the RIAS. Content coded by two trained coders According to five categories: ‘medical’, ‘therapeutic’, ‘psychosocial’, ‘lifestyle’, and ‘other’. Inter-rater reliability assessed	Number of potential and actual symptoms and problems addressed during the consultation Children’s participation in the communication The number and type responses provided by HCPs The initiation (who had initiated the topic and direction (who was addressed) of potential and actual problems Consultation time	Twice as many problems were included in the intervention group compared to the control group (p > 0.001). Children in the intervention group had more turns during the consultation in which a medical topic was discussed (p = 0.013) and provided more information (p = 0.021) compared to control group. Physicians provided more responses with medical content to children in the intervention group (p = 0.030) – nurses responses did not vary. Physicians provided more information to the intervention group (p = 0.0080). No difference between groups on number of times that children initiated communication about potential problems or on the number of actual or potential problems initiated by an adult directed towards an adult. More problems addressed by parents or HCPs directed towards children in the intervention group compared to the control group (p < 0.001). Consultation time did not increase between the two groups.	Poor recruitment resulted in fewer children in intervention group than planned. Researchers adjusted numbers and matched 42 in control with 42 in intervention on age and gender. Study underpowered Lack of randomization Analysis did not control for the effect of individual differences between HCPs.	Sisom prompted a significant change in communication patterns particularly In terms of provider communication with more attention being directed towards children and also to some extent by more child participation, as children contributed with more information. More problems were addressed during the consultations, and there were more follow-up questions and information given by HCPs.
Quantitative (descriptive) design
Bejarano et al. (2015), USA	Pre–post experimental design – pilot and feasibility study	5–17 years Neuromuscular scoliosis Environmental allergies	Outpatient department N = 26 (11 scoliosis, 15 allergies)	SDM intervention (decision aid) designed by professionals and with consultation with ‘families’. Patients (child) and parents focus	Doctor who had brief training in SDM. One OPD appt. to introduce families to the decision aid and one OPD appt. to discuss the decision.	Questionnaires completed by eligible children and parents Knowledge questionnaire (non-validated) SDM satisfaction scale (non-validated), 0–4 scale, higher scores indicate greater satisfaction SURE test (validated) measure of decisional conflict, 0–4 scale Decision regret scale (used in other studies), 0–5 scale, higher scores indicate higher levels of regret. Doctors SDM satisfaction scale-clinician form (non-validated), 0–4 scale, higher scores indicate greater satisfaction Allergen immunotherapy appointment-keeping data from the EMR for three months after starting treatment	Parent/child assessed on their knowledge of environmental allergies and neuromuscular Scoliosis. Level of satisfaction, decisional conflict and decision regret. Clinician assessed level of satisfaction with SDM Adherence (Patients beginning allergen immunotherapy)	Parents demonstrated increased knowledge (n = 17; p < 0.008). Children with allergies (n = 4) completed pre/post-test, no difference in knowledge found. Parents (n = 17) report high satisfaction with the tool (n = 17, mean + SD: 3.20 + 1.0 for allergen immunotherapy and 3.77 + 0.24 for neuromuscular scoliosis). Children reported much lower levels of satisfaction than their parents (n = 3, mean: 1.0). Low levels of decisional conflict and very high confidence that an optimal treatment decision had been reached reported amongst children (mean 4) and parents (mean 3.76). Low levels of decisional regret reported amongst parents (mean item scores: 1.43 to 1.86) Doctors found the SDM tool acceptable and feasible (n = 5, 1 allergist, 4 orthopaedic surgeons, mean item scores ranged from 4.2 to 4.8. A modest, if any, improvement in adherence (72.6% + 13.0 for study patients vs. 68.9% + 28.9 for comparison group.	Findings limited both by sample size (particularly children’s data) and by lack of participant retention, ‘Further studies on the topic would not combine data from two such distinct and different conditions’.	Analysis descriptive and qualitative Poor pre- and post-test follow-up rates (children n = 4) Findings suggest SDM intervention were well received by parents, and was valued by doctors in helping patients make informed decisions.
Rijswijk et al. (2016), The Netherlands	Quantitative	6–19 years (6–18 years in the SMA) Type 1 diabetes	Hospital outpatients depts. And one primary care centre N = 31	SMA Patient focus (parents were welcome to accompany their children to the SMA).	Dr, 3–6 other team members such as dietician, diabetes nurse, psychologist, and social workers. An outpatient appointment with SMA lasting 90 min (range 62–115 min).	Videotapes of 42 individual outpatient visits compared with five videotaped SMAs A list of topics noted to be judged against whether they were included in the SMA were taken from guidelines from ISPAD Guidelines for management of diabetes, type 1, Diabetes (IDDM) in childhood and adolescence. Questionnaire Data analysed utilizing one way ANOVAs.	Amount of diabetes-related topics discussed Conversational contributions of the participants Children and adolescents assessment of the social and informational aspects of an SMA	Results indicate that more diabetes specific topics can be discussed during SMA’s than in individual out patient’s visits. Physicians spoke relatively longer in the individual visits than in the SMAs. No difference between visits in patients’ conversational contributions. More silence during individual appts. Overall, patients were positive about the SMA. 92.6% learned from the other patients and their questions. 70% of patients recommend SMA – 55% would want SMA at follow-up appointment. 81.5% felt presence of other patients helped them understand the information better and 44.4% of them to ask questions	Potentially patients felt overwhelmed by so many team members present. Potentially uncomfortable with parents present who were not always there during individual appts. Low number of SMAs	SMAs have some added value for children and adolescents with type 1 diabetes. More research needed to determine whether SMA’s are effective in diabetes control. Future studies may need to look at age as an indicator of group visits.
Mixed methods design
Franklin et al. (2006, 2007, 2008), UK	Mixed methods longitudinal study, experimental design Three arms: conventional insulin therapy, conventional therapy + sweet talk and intensive therapy + sweet talk	8–18 years Diabetes type 1	At patient’s home or wherever they took their mobile phones N = 60	‘Sweet talk’ ‘Persuasive technology’ Text messages sent to young person’s mobile phone. Scheduled messages sent are tailored to patient profiles to support patients between clinic visits and young people can text back with queries about their diabetes Patient focus	Automated messages sent out by research team (planned by the diabetes team and research team) described as a motivational support network and responses to messages from the young people. 12-month period	All text messages sent to and from the Sweet Talk system were recorded. Message transcripts were analysed using the constant comparative method to identify descriptive themes. User satisfaction questionnaire Semi-structured interviews at the end. Behavioural change measured by validated psychological measures.	Explored how patients with Diabetes type 1 interact with the Sweet Talk system: Frequency of patient interactions/messaging Association between Messaging and patient characteristics Content of text messages Young people’s satisfaction with the system Behavioural change (self-efficacy diabetes score, diabetes knowledge score, diabetes social support interview)	1180 messages submitted. Total messaging varied widely: 0–240 per individual (median 6). Five patients contributed 52% (614/1180) of the messages. Two boys sent 338 of the total 1180 messages received (29%). None found Blood glucose readings (most common), diabetes questions, diabetes information, personal health administration, social aspects, technical messages, message errors, and message responses. 81% of the young people using sweet talk felt it had helped their diabetes self-management during the year of study. 90% wanted sweet talk to continue at the end of the study. Sweet talk had no influence on the diabetes knowledge score or patients’ perceptions of the quantity they received from family and friends. Sweet talk patients on conventional therapy scored significantly higher on self-efficacy than those not receiving the intervention. No significance in glycaemic control	Five users accounted for the majority of the messages. ‘Sweet Talk appeared to provide an opportunity for obtaining information between clinic visits and to send questions that patients may have found difficult to ask in a clinic setting’. No sweet talk + intensive insulin therapy arm to the study.	Automated, scheduled text messaging successfully engaged young people with diabetes. Further research would be advised to explore patterns of usage in different age and clinical groups. As well as inviting patients to join the editorial board of similar text messaging interventions. Sweet talk fulfils the identified need for a socially acceptable, low-cost behavioural support intervention that can be integrated into routine clinic care.
Haze and Lynaugh (2013), USA	Mixed methods – pilot study	13–18 years Asthma	Two primary care clinical sites but research undertaken by text/telephone N = 20, 2 RN care coordinators	Smart phone app including four elements: (1) Asthma control questionnaire, (2) Personalized asthma control plan, (3) Asthma educational modules, (4) Text messaging Young Person Healthcare staff focus	RN care coordinator Participants responded to text messages at all times of the day or evening	Data logs were obtained from smart phone apps Semi structured telephone interviews	Satisfaction/ Acceptability (Assessed outcomes for both patient and healthcare staff) .	17/20 indicated a perception of positive change in the nurse–patient relationship. Young people discussed improved access and ‘feeling able to ask more questions’ was the reason for an improvement in the relationship with the RN care coordinator. RN care coordinators believed that the teenagers were likely to respond more honestly about their asthma control. RN care coordinator felt reassured that the teenager was consciously thinking about his/her asthma and was actively engaged.	Pilot study, no control group for comparison between smart phone use and traditional communication. Some teenagers did not have smart phones, so were lent them and therefore may have felt the need to respond more frequently. Delay in obtaining smartphones meant the pilot was extended from 2 months to 3–6 months. Smart phone apps do not link with Electronic patient records. Text messaging over a number of days could all be still one conversation and the recording of a single text message in notes may not give an overview of the whole conversation.	Further study required to demonstrate longer term use of smart phone use in supporting communication between patients and their healthcare team. Knowledge needs to be developed to support technology use in connecting nursing care and the patient experience. Need for healthcare staff to be involved in the development and utilization of technologies to enhance patient care.
Yoo (2015), USA	RCT	12–18 years Asthma	Home or wherever mobile device is N = 218 (131 in intervention group M-CHESS) versus 87 in control group with PDA and educational resources)	M-CHESS – Text messaging Patients and Nurse Managers focus	5 Nurse Case Managers 21-month period	Data from intervention arm only used. Content analysis of text messages undertaken and coded using a scheme adapted from the RIAS.	The study examined the types of content prevalent in three types of text messages Tailored text messages by nurse managers to a specific patient Targeted text messages by nurse managers to all patients Adolescents text messages	2953 text messages were analysed. 1% of these were linked to facilitating communication between the young person and health professional. 164 texts sent. Task-focused behaviours were found a total of 462 times (average of 2.82 times per message). Socioemotional behaviours were found a total of 163 times (average of 0.99 times in each tailored text message), t = 9.94, p < 0.001 2475 sent. Task-focused behaviours appeared a total of 5485 times (average of 2.22 times per message). Socioemotional behaviours took place 1063 times (average of 0.43 times in each message), t = 57.43, p < 0.001). The research found the characteristic of patient centeredness was evident in 38% of text messages sent by nurse case managers. 314 texts sent. Adolescents with asthma sent their case managers a considerable amount of texts with the purpose of socioemotional behaviours.	Individual differences between the content of text messages exchanged between nurse case managers and adolescent was not explored. Findings only based on 131 adolescents and 5 case managers therefore cannot be generalized.	Extends the understanding of the role of mobile text messaging in patient – clinician communication.

Note: SMA: Shared Medical Appointments; GSD-Y: Guided Self-Determination-Youth; SDM: Shared Decision Making; M-CHESS: Mobile Comprehensive Health Enhancement Support System; HCP: healthcare professional; PAID: Problem Areas in Diabetes; RIAS: Roter Interaction Analysis System; EMR: electronic medical record; ANOVA: analysis of variance; SD: standard deviation; T1D: Type 1 diabetes; HRQoL: Health-related Quality of Life; OPD: Outpatient Department; DCE: Discrete Choice Experiment; IDDM: Insulin Dependent Diabetes Mellitus; PDA: Personal Digital Assistant.

What methods and interventions are used to engage children and young people in consultations?

The first objective of the review was focused on clearly defining which methods/interventions are reported as being used to engage children and young people in healthcare consultations about their long-term conditions. Table 3 summarizes the samples, methods, designs and outcomes of the included studies.

The studies detailed the use of a wide variety of interventions and methods to engage children and young people in their consultations, these could be seen to fit within the following headings of methods and intervention to prompt or open up communication, training to improve engagement and redesigning the consultation process to facilitate engagement.

Methods and interventions to prompt or open up communication between children and young people and health professionals: furniture to prompt and encourage children’s engagement (Chin et al., 2014), drawings to prompt children’s engagement (Berger, 1980); reflective consultation sheets completed by children and young people (Husted et al., 2014); leaflets designed by young people to prompt discussion during consultation (Milnes et al., 2013); written sheets for children and young people to define key topics to underpin consultations (Gregory et al., 2011); structured questionnaire tools to underpin discussion during consultations (Petersson et al., 2016); a computer-based system to help children and young people define topics to discuss during consultations (Vatne et al., 2013);

Training to improve engagement during consultations; consultation communication training for health professionals (Bejarano et al., 2015; Gregory et al., 2011); consultation communication training for young people (Husted et al., 2014);

Redesigning the consultation process to facilitate engagement; shared medical appointment models (Bejarano et al., 2015; Rijswijk et al., 2016); two-way text messaging interaction between health professionals and young people (Franklin et al., 2006, 2007, 2008; Yoo, 2015); and a smart phone application to focus on condition management and interaction with health professionals (Haze and Lynaugh, 2013).

Nine studies focused on face-to-face consultations within an outpatient setting (Berger, 1980; Bejarano et al., 2015; Chin et al., 2014; Gregory et al., 2011; Husted et al., 2014; Milnes et al., 2013; Petersson et al., 2016; Rijswijk et al., 2016; Vatne et al., 2013), with three papers focusing on remote engagement (Franklin et al., 2006, 2007, 2008; Haze and Lynagh 2013; Yoo, 2015). Studies addressed a range of long-term conditions, with more evidence for some conditions: diabetes (n = 4), asthma (n = 3), heart disease (n = 1), palliative care (n = 1), neuromuscular (n = 1), allergy (n = 1) and general paediatrics (n = 2).

Study designs included qualitative (n = 5), quantitative randomized controlled (n = 1), quantitative non-randomized (n = 1), quantitative descriptive (n = 2) and mixed method studies (n = 3). The qualitative studies focused on gaining the perceptions and experiences of young people through interviews (Husted et al., 2014; Milnes et al., 2013; Petersson et al., 2016) and observing interactions during the clinic consultation (Husted et al., 2014; Rijswijk et al., 2016). In the quantitative studies, the assessment of engagement as a result of the intervention/method was sometimes made within broader measures of long-term condition management, for example, HRQoL and adherence (Gregory et al., 2011). In some studies, the assumption appeared to be that improved levels of engagement could be demonstrated through increased knowledge levels and/or physiological measures of condition management (Bejarano et al., 2015); there is limited evidence from our analysis to assert that these connections can be robustly made. Some studies utilized validated measures of engagement: Patient Enablement Inventory (young people >11 years) (Gregory et al., 2011), Emotions Prior to Clinic Visit (children >7 years old) (Gregory et al., 2011), Diabetes Continuity of Care Scale (perceptions of diabetes team) (young people >11 years) (Gregory et al., 2011), Healthcare Climate Questionnaire (Gregory et al., 2011), Problem Areas in Diabetes (PAID) score (Gregory et al., 2011) and Self-Efficacy Diabetes Score (Franklin, 2006, 2007, 2008). However, some studies used measures specifically developed for the particular study (Franklin et al., 2006, 2007, 2008; Gregory et al., 2011). Some studies assessed children’s and young people’s engagement by researchers analysing the videoed observations of consultations (Rijswijk et al., 2016; Vatne et al., 2013). Due to heterogeneity of outcome measures and methodological design across included studies, it was not possible to undertake statistical analysis.

Which methods are effective in engaging children and young people in their healthcare consultations?

The second objective of the review focused on exploring what the evidence presents about which methods are the most successful/effective in engaging children and young people in their healthcare consultations. The limited number of studies in the review (n = 12) and the lack of robust quantitative methods used means that the evidence relating to ‘what works’ for children and young people is limited.

The studies included in the review provide evidence that the interventions helped children and young people to:

improve the frequency with which children and young people engaged in the dialogue during consultations through a drawing to prompt discussion (Berger, 1980), structured reflective sheets (Husted et al., 2014), a preconsultation guide (Milnes et al., 2013), a computer-based communication tool (Vatne et al., 2013) and a smart phone app (Haze and Lynaugh, 2013);

discuss a wider range of their concerns during consultations through children choosing a style of chair to sit on to prompt them to express their emotions (Chin et al., 2014), structured reflection sheets and communication training for young people (Husted et al., 2014), a computer-based communication tool (Vatne et al., 2013) and shared medical appointments with other young people (Rijswijk et al., 2016);

talk more openly and honestly to health professionals through targeted communication training for young people (Husted et al., 2014), preconsultation guide/leaflet designed by young people (Milnes et al., 2013) and a smart phone app (Haze and Lynaugh, 2013);

be more satisfied with their engagement/consultation through use of a shared decision-making aid (Bejarano et al., 2015), attending shared medical appointments with other young people (Rijswijk et al., 2016) and using a text messaging communication system (Franklin, 2006, 2007, 2008).

The quality review of the evidence, conducted using the MMAT tool (Pluye et al., 2011), indicates that the overall quality of the studies was poor to fair. The only large scale Randomised Controlled Trial (RCT) of children’s and young people’s engagement (Gregory et al., 2011) failed to show any effect of intensive healthcare professional consultation training and materials for young people on their enablement scores, emotions about coming to clinic, continuity of care, PAID or their self-care.

The evidence from the review was challenging to synthesize due to the inconsistency in the terminology used, lack of definitions of the core elements of consultation or engagement, outcomes measured and the interventions being used in a range of settings with different professional groups.

Discussion

Despite using a broad search to try and capture the diversity of terms relating to children’s and young people’s engagement, only 12 studies met the inclusion criteria for interventions and methods to engage children and young people with long-term conditions in consultations. Although current evidence demonstrates some benefits of the interventions to engage children and young people with long-term conditions in their consultations, this evidence is disparate, inconclusive or drawn from single sites or single conditions. The authors recognize the difficulties inherent in designing and conducting a rigorous trial to appraise complex interventions such as those focused on children’s and young people’s engagement during consultations.

As this is the first review to focus on children’s and young people’s engagement in consultations, we found it useful to consider the different levels of engagement afforded by the interventions and methods. The findings of the review are discussed in relation to the level of involvement model (Save the Children, 2010); the studies were categorized as low, medium or high involvement evident in the range of interventions and methods reported (see Figure 2).

Figure 2.

Application of the Save the Children, Putting Children at the Centre Involvement Model (2010).

Most of the reported interventions and methods were categorized as ‘low level of engagement’ as they focused on providing children and young people with information and a structured method to encourage them to ‘talk more’ or voice their opinions and issues; children’s engagement was shaped and controlled by the adults in the consultation (Figure 2). Interventions categorized as ‘medium level of engagement’ were those that enabled children and young people to use technology to support their engagement. Although this review did not identify any child-led initiatives (the highest level of engagement), some interventions were developed with young people (Milnes et al., 2013) or focused on developing long-term communication skills (Gregory et al., 2011, Husted et al., 2014, Vatne et al., 2013) and as such these interventions were categorized as a ‘higher level of engagement’. It is hoped that as more health services recognize that children’s and young people’s agendas and priorities need to be at the centre of their care that new interventions and methods will be developed that are more participatory, engaging and child-centred. Interventions may be focused on targeting specific age groups but need to recognize that children’s ability and preferences for engagement will be influenced by other factors including previous healthcare experiences.

This review focused on children and young people with long-term conditions, as they often have protracted and ongoing contact and consultations with health professionals and therefore there can be multiple opportunities to build skills and positive experiences for this group of healthcare users. It is often assumed that children and young people with long-term conditions are experienced in communicating and interacting with health professionals, but this is not always the case (Bray et al., 2012).

Strengths/limitations

This study aimed to minimize publication bias by undertaking a comprehensive search of both the published and grey literature. Two reviewers independently screened the results, data extracted and quality assessed the included studies. Due to the variable study designs, outcomes and quality of published reports, we were not able to conduct a meta-analysis. As the studies reported a range of different interventions, within different settings and used with different groups of professionals, this made the comparison of engagement challenging.

Conclusion

This review suggests that interventions can have a role in improving the frequency and range of children’s and young people’s engagement during consultations and can improve their satisfaction with their interactions, decisions and relationships with health professionals during consultations. There seems to be more work needed to explore the influence of consultation interventions and methods on children’s and young people’s health outcomes (physiological, psychosocially). This review has demonstrated that there is a need for a more systematic development and robust evaluation of interventions to improve children’s and young people’s skills and abilities and opportunities to actively participate in consultations and decisions about the care of their long-term condition.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project received funding from the Research Investment Fund at Edge Hill University.

Supplementary material

Supplementary material is available for this article online.

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