Design of healthcare services

National Guideline Alliance (UK)

Design of healthcare services

Babies, children and young people’s experience of healthcare

Evidence review K

NICE Guideline, No. 204

Authors

National Guideline Alliance (UK).

London: National Institute for Health and Care Excellence (NICE); 2021 Aug.

ISBN-13: 978-1-4731-4231-2

Design of healthcare services

Review question

How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Introduction

Babies, children and young people accessing healthcare services have needs that may be different to those of adults. These can be related to their size, age, developmental stage, and their different perceptions compared to adults. It is therefore important when designing healthcare services for this population that the perspectives and needs of babies, children and young people are taken into consideration, and that services designed for adults are not adopted without consideration of these needs and perspectives.

The aim of this review is to determine how the views and perspective of babies, children and young people can and should be taken into consideration when designing healthcare services.

Summary of the protocol

See Table 1 for a summary of the population, phenomenon of interest and primary outcomes characteristics of this review.

Table 1

Summary of the protocol.

For further details see the review protocol in appendix A.

Methods and process

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods for this review question are described in the review protocol in appendix A and the methods supplement.

Clinical evidence

Included studies

This was a qualitative review with the aim of:

Understanding how children and young people can and should be involved in the design of healthcare services.

A systematic review of the literature was conducted using a combined search. Seven studies were included in this review. Five studies used qualitative methods (Alderson 2019, Fletcher 2011, Maconochie 2018, Manning 2018, Whiting 2016). In addition, 2 of the included studies used mixed methods (Ellis 2014, Whiting 2018). All studies were conducted in the UK.

Three studies examined the views of children and young people reflecting on their participation in groups intended to involve them in the design of healthcare services (Alderson 2019, Whiting 2016, Whiting 2018). Two of these examined the views of 15-22 year-old members of the NHS England Youth Forum (NHSEYF) about their participation in the forum itself using, respectively, a focus group design and a mixed methods (including semi-structured interviews) design (Whiting 2016, Whiting 2018); 1 study, using a semi-structured interview and co-produced group design, examined the views of looked after children (LAC) and care leavers, aged 15-21 years, about their experience of participating in a Patient and Public Involvement (PPI) group for a health service intervention trial with LAC.

Four of the included studies were service evaluation studies of specific parts of the UK healthcare services that have involved children and young people, and parents of babies, to either affect change in their design and consequent delivery of services (Ellis 2014, Maconochie 2010) or to identify relevant areas for change (Fletcher 2011, Manning 2018). These studies were included because they provided examples of ways in which specific parts of the UK health services have involved children and young people in either the design of healthcare services or the identification of areas in need of change from their perspective. These studies did not contribute to the themes or to the qualitative evidence assessed using GRADE-CERQual, but were reviewed by the committee as they included useful information on participatory methods.

Three of the participatory methods studies used techniques such as ‘Draw, write/tell’ (Fletcher 2011, Maconochie 2018, Manning 2018), whilst 1 study used an experience-based mixed method design (Ellis 2014). One study involved children and young people, aged approximately 4 to 18 years-old, who were either hospital patients or members of a Youth Parliament to identify, respectively, what they think the fundamental attributes and skills of nurses should be, and what they think about when they are about to be and have been admitted to hospital (Fletcher 2011); 1 study involved babies and young children under 4 years old and their parents attending a post-natal health visitor parent-baby group to adapt the group to take into account infants’ perspectives (Maconochie 2018); 1 study involved children and young people, aged 7-15 years, who are survivors of critical illness, and their parents, to identify support needs and preferences for future research priorities (Manning 2018). Finally, 1 study involved children and young people, aged 10-16 years, attending an orthodontic clinic to improve the consultation experience (Ellis 2014).

The included studies are summarised in Table 2 and Table 3.

The data from the 3 included studies examining children and young people’s views were synthesised and explored in a number of central themes and sub-themes (as shown in Figure 1). Main themes are shown in dark blue and sub-themes in pale blue.

Figure 1

Theme map.

See the literature search strategy in appendix B and study selection flow chart in appendix C.

Excluded studies

Studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.

Summary of studies included in the evidence review

Summaries of the studies that were included in this review are presented in Table 2 and Table 3.

Table 2

Summary of included qualitative studies.

Table 3

Summary of included service evaluation studies.

See the full evidence tables in appendix D.

Quality assessment of studies included in the evidence review

A summary of the strength of evidence (overall confidence), assessed using GRADE-CERQual is presented according to the main themes:

Main theme 1: Participation in design of healthcare services

Sub-theme 1.1: Responsiveness to input. The overall confidence in this sub-theme was judged to be low.
Sub-theme 1.2: Supported engagement. The overall confidence in this sub-theme was judged to be low.
Sub-theme 1.3: Working and collaborating with healthcare professionals. The overall confidence in this sub-theme was judged to be low.

Main theme 2: Barriers to, and facilitators of, participation in design of healthcare services

Sub-theme 2.1: Dissemination of output. The overall confidence in this sub-theme was judged to be very low.
Sub-theme 2.2: Flexible attendance of sessions. The overall confidence in this sub-theme was judged to be very low.
Sub-theme 2.3: Format of participation. The overall confidence in this sub-theme was judged to be low.
Sub-theme 2.4: Incentives to participate. The overall confidence in this sub-theme was judged to be very low.
Sub-them 2.5: Length and timing of sessions. The overall confidence in this sub-theme was judged to be very low.
Sub-theme 2.6: Location, transport and travel distance. The overall confidence in this sub-theme was judged to be low.
Sub-theme 2.7: Opportunities to learn new skills. The overall confidence in this sub-theme was judged to be low.

Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in appendix F for details.

Evidence from reference groups and focus groups

There was no evidence from the children and young people’s reference groups and focus groups for this review so there is no evidence summary in appendix M.

Evidence from national surveys

The grey literature review of national surveys of children and young people’s experience provided additional evidence for this review. A summary of the findings is presented in Table 4.

Table 4

Summary of the evidence from national surveys.

See full the full evidence summary in appendix N.

Economic evidence

A systematic review of the economic literature was conducted but no studies were identified which were applicable to this review question. A single economic search was undertaken for all topics included in the scope of this guideline. See supplementary material 6 for details.

Excluded studies

Economic studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.

Summary of studies included in the economic evidence review

No studies were identified which were applicable to this review question.

Economic model

No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.

The committee’s discussion of the evidence

Interpreting the evidence

The outcomes that matter most

This review focused on the preferences of children and young people in relation to their involvement in the design of healthcare services. To address this issue, the review was designed to include qualitative data, and as a result, the committee could not specify in advance the data that would be located. Instead, they identified the following main themes to guide the review:

Areas in which babies, children and young people (and parent/carers) would like their perspectives to be taken into account (e.g. design of physical spaces, amenities such as Wi-Fi etc., transport services, feedback regarding staff attitudes and values including participation in staff selection, making services inclusive for marginalised and socially excluded groups, monitoring and evaluation of patient experience etc.)
Ease of complaints and compliments procedures
Engagement through social media
Feedback about how views have affected design of healthcare services
Input into commissioning and decision making
Role of co-production with children and young people, and the parents/carers of babies, for example through gaining perspectives and collective engagement through forums and local groups (including via service user representation on groups, youth councils, Patient Participation Groups, maternity and babies etc.) into areas such as CAMHS and others
Use of age- or developmentally- appropriate format to express views (e.g. drawings)

The main themes that were identified related to participation in the design of healthcare services and barriers to, and facilitators of, participation, such as practicalities of attendance and participation. The committee did not prioritise any of these themes above other ones, and considered all the evidence as valuable in making their recommendations.

There was no evidence found specifically on complaints or compliment procedures.

The quality of the evidence

The quality of the evidence for the systematic review was assessed using GRADE-CERQual, and the quality of the methodology of the individual studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist.

The overall confidence in the review findings ranged from low to very low. Themes were commonly downgraded because of the relevance and adequacy of the data, with all three studies that contributed to the findings (Alderson 2019, Whiting 2016, Whiting 2018) including only participants 15-years and over and participants over the age of 18-years. Unfortunately, these studies did not report sufficient data to determine the number of such participants. Regarding adequacy, few of the themes were supported by rich data and they were accordingly downgraded. All themes were downgraded for methodological limitations although there were only minor concerns about the three studies individually and together. Some themes were also downgraded for coherence because the primary studies did not discuss them in detail and/or it is not clear whether underlying data support the review finding.

The 4 service evaluation case studies, which did not contribute to the qualitative evidence assessed using GRADE-CERQual, were all assessed using the CASP qualitative checklist as having moderate concerns about the reported methodology.

Overall, due to the small amount and poor quality of the evidence, the committee also used their knowledge and experience when drafting the recommendations.

Benefits and harms

The committee discussed the fact that, based on their knowledge and experience, it was important to involve children and young people in the design of healthcare services, and that parents or carers should be involved as proxies for babies or young children, and so they recommended this.

There was little evidence on the involvement of diverse groups, under-represented groups or people who do not use services, although one study involved looked-after children and care leavers participating in a Patient and Public Involvement (PPI) group (Alderson 2019). The committee agreed that it was important to involve people from under-represented groups to ensure that representative input was obtained from across the community who were likely to use the services, but also discussed the fact that people who had not used services may be able to provide insight into reasons for this. They therefore emphasised in the recommendations that it was not just current service-users who should be targeted – it may be that the most valuable feedback would come from previous service users who had used a service but had discontinued for one reason or another, or potential users who had reasons why they had not accessed the service. The committee discussed how to identify these under-represented groups but were aware of pro-active methods that could be used such as outreach work to engage and ask opinions from people who are not accessing services, targeting economically deprived areas, using index of multiple deprivation for schools and home addresses, and using snowball sampling. The committee also included a separate recommendation, based on their knowledge and experience, that healthcare professionals should not make assumptions about who should and could be involved in healthcare design, and that all children and young people would have relevant opinions.

The committee discussed the evidence from the theme on barriers and facilitators to participation. The major barriers to participation by children and young people appeared to be practical concerns such as travel to venues, convenient timing of sessions, and flexibility of participation. In addition to this, the committee were aware that children or young people with disabilities or communication difficulties would require additional support to attend or participate. Children and young people did not seem to think it was necessary to be paid to provide input, although the group of looked after children had more concerns about travel expenses and meal vouchers. However, there were other incentives to participation such as certificates, learning new skills, helping other people, or learning more about the NHS. Young people also expressed the view that the content should be interactive, age and developmentally appropriate, and had concerns that some topics would be too difficult for younger children to understand. The committee therefore made a recommendation stating that contributing should be made easy, engaging, and that practical issues should not prevent involvement.

The systematic review evidence from the theme of participation in design of healthcare service showed that young people are motivated to provide input into the design of healthcare services. Young people also value being supported during their participation and engagement with the process, and valued working and collaborating with healthcare professionals for both the expert knowledge they have and the professional relationships they cultivate with them, but they want to know that their voices are genuinely being heard and listened to, and acted upon. The committee agreed that it was important to provide feedback on the action that had been taken and were aware of a number of ways to do this, including methods such as ‘Ask Listen Do’ and ‘You Said We Did’, and made a recommendation to state this. The committee agreed that obtaining input from children and young people should be meaningful and not tokenistic, and that if children and young people felt their input was not being taken seriously and acted upon then they were less likely to engage in the future.

The 4 service evaluation studies provided examples of ways in which specific parts of the UK health services have involved children and young people in either the design of healthcare services or the identification of areas in need of change from their perspective. The committee reviewed this evidence and discussed the examples (such as the draw/write/tell technique, an experience-based design approach, a multi-faceted participatory approach, and the use of social media). The committee agreed that it was not possible to recommend a single method in this guideline as the best way to involve children and young people but that a variety of methods could be used, and this backed up their recommendation that obtaining input into service design needed to be engaging and age-appropriate.

In addition to the systematic review evidence there was some additional evidence from the national surveys of children and young people’s experience. One survey had identified that young people were keen to input into care and treatment, to improve the service for others, and young people in another survey indicated that they felt they should be involved in identifying needs or problems, designing physical spaces, designing publicity materials, and be involved in budgets, policies and recruitment, as well as mystery shopping and reviewing services. Children and young people suggested different ways of obtaining this input with preferred methods including small focus groups, as well as age-appropriate surveys or questionnaires, which could be completed by parents on behalf of younger children. Incentives to complete surveys, such as small payments, were also considered a good idea. The committee agreed that the evidence from the national surveys reinforced the evidence from the systematic review, and that their recommendations on involvement in design of services and co-production would allow organisations to involve young people in all these areas and using these different techniques.

Cost effectiveness and resource use

There was no existing economic evidence for this review. The committee agreed that meaningful involvement of children and young people in the design of services would require resources and time, but that this should still be regarded as a best practice as it should lead to the design of more appropriate and acceptable services in the long term. The committee agreed that many healthcare organisations already did this and that there were pockets of good practise already, but that the recommendations would make this more consistent across the health service.

Other factors the committee took into account

The committee discussed that the United Nations Convention on the Rights of the Child states that ‘Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously’ and that the recommendations made reinforced this position.

Recommendations supported by this evidence review

This evidence review supports recommendations 1.7.1 to 1.7.4 in the NICE guideline.

References

Alderson 2019
Alderson, H., Brown, R., Smart, D., Lingam, R., & Dovey‐Pearce, G. (2019). ‘You’ve come to children that are in care and given us the opportunity to get our voices heard’: The journey of looked after children and researchers in developing a Patient and Public Involvement group. Health Expectations, 22(4), 657–665. [PMC free article: PMC6737768] [PubMed: 31115138]
Ellis 2014
Ellis, P. E., & Silverton, S. (2014). Using the experience-based design approach to improve orthodontic care. Journal of orthodontics, 41(4), 337–344. [PubMed: 25404670]
Fletcher 2011
Fletcher, T., Glasper, A., Prudhoe, G., Battrick, C., Coles, L., Weaver, K., & Ireland, L. (2011). Building the future: children’s views on nurses and hospital care. British journal of nursing, 20(1), 39–45. [PubMed: 21240138]
Maconochie 2010
Maconochie, H., & McNeill, F. (2010). User involvement: children’s participation in a parent-baby group. Community Practitioner, 83(8). [PubMed: 20722326]
Manning 2018
Manning, J. C., Hemingway, P., & Redsell, S. A. (2018). Survived so what? Identifying priorities for research with children and families post‐paediatric intensive care unit. Nursing in critical care, 23(2), 68–74. [PubMed: 28516470]
Whiting 2016
Whiting, L., Roberts, S., Etchells, J., Evans, K., & Williams, A. (2016). An evaluation of the NHS England Youth Forum. Nursing Standard.
Whiting 2018
Whiting, L., Roberts, S., Petty, J., Meager, G., & Evans, K. (2018). Work of the NHS England Youth Forum and its effect on health services. Nursing children and young people, 30(4), 34–40. [PubMed: 29944305]

Appendices

Appendix E. Forest plots

Forest plots for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No meta-analysis was conducted for this review question and so there are no forest plots.

Appendix F. GRADE-CERQual tables

GRADE-CERQual tables for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services? (PDF, 337K)

Appendix G. Economic evidence study selection

Economic evidence study selection for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No economic evidence was identified which was applicable to this review question.

Appendix H. Economic evidence tables

Economic evidence tables for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No economic evidence was identified for this review.

Appendix I. Economic evidence profiles

Economic evidence analysis for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No economic evidence was identified for this review.

Appendix J. Economic analysis

Economic evidence analysis for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No economic analysis was conducted for this review question.

Appendix K. Excluded studies

Excluded studies for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Clinical studies

Table 9

Excluded studies and reasons for their exclusion.

Economic studies

No economic evidence was identified for this review. See supplementary material 6 for details.

Appendix L. Research recommendations

Research recommendations for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

No research recommendations were made for this review question.

Appendix M. Evidence from reference groups and focus groups

Reference group and focus group evidence for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Methods for the reference and focus groups and details of how input was obtained from the children and young people are described in Supplement 4.

No evidence from the reference groups or focus groups was identified for this review question.

Appendix N. Evidence from national surveys

Evidence from national surveys for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services? (PDF, 368K)

Final

Evidence reviews underpinning recommendations 1.7.1 to 1.7.4 in the NICE guideline

These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK574985PMID: 34730908

Table 1Summary of the protocol

Population	People <18 years old who have experience of healthcare Studies that use the responses of parents or carers as proxies for their child will be included only if they are responding on behalf of their child or charge, and: the baby or child of the parent or carer is under-5 years-old, or there is a clear rationale provided as to why the study is using parents’ or carers’ views on healthcare as proxies for their child.
Phenomenon of interest	Experience of healthcare, in particular of contributing being involved into the design of healthcare services.
Primary outcomes	Themes will be identified from the literature. The committee identified the following potential themes (however, not all of these themes may be found in the literature, and additional themes may be identified): Areas in which babies, children and young people (and parent/carers) would like their perspectives to be taken into account (e.g. design of physical spaces, amenities such as Wi-Fi etc., transport services, feedback regarding staff attitudes and values including participation in staff selection, making services inclusive for marginalised and socially excluded groups, monitoring and evaluation of patient experience etc.) Ease of complaints and compliments procedures Engagement through social media Feedback about how views have affected design of healthcare services Input into commissioning and decision making Role of co-production with children and young people, and the parents/carers of babies, for example through gaining perspectives and collective engagement through forums and local groups (including via service user representation on groups, youth councils, Patient Participation Groups, maternity and babies etc.) into areas such as CAMHS and others Use of age - or developmentally - appropriate format to express views (e.g. drawings)

: CAMHS: Child and Adolescent Mental Health Service

Figure 1Theme map

Table 2Summary of included qualitative studies

Study

Population

Methods

Themes

Alderson 2019

Study design

Semi-structured interview and co-produced group

Aim of the study

To examine experience and reflection of a group of children and young people, and academic researchers, who developed a Patient and Public Involvement group that was set up in context of ongoing health service intervention trial with looked after children and care leavers.

North-East England, UK

N=16 people

n=11 looked after children and care leavers
n=1 participation officer
n=4 researchers

Semi-structured interview

N=12 people

n=7 looked after children and care leavers
n=1 participation officer
n=4 researchers

Co-produced group

N=15 people

n=11 looked after children and care leavers
n=1 participation officer
n=3 researchers

Data from participation officer and researchers were not extracted nor included in this review

Characteristics

Age (range): 15-19 years

Gender of PPI participants (M/F): 6/5

Recruitment

Convenience sample of the 11 young people participating in a Patient Public Involvement group and attending a Children in Care Council session

Data collection

Two rounds of semi-structured interviews with topic guide, plus 9 co-produced group sessions with last session to determine ‘top tips’ for working with looked after children, care leavers, and other marginalised children

Analysis

Thematic analysis using constant comparison

Participation in design of healthcare services: Responsiveness to input
Participation in design of healthcare services: Supported engagement
Participation in design of healthcare services: Working and collaborating with healthcare professionals
Barriers to, and facilitators of, participating in design of healthcare services: Flexible attendance
Barriers to, and facilitators of, participating in design of healthcare services: Format of participation
Barriers to, and facilitators of, participating in design of healthcare services: Incentives to participate
Barriers to, and facilitators of, participating in design of healthcare services: Length and timing of sessions
Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance
Barriers to, and facilitators of, participating in design of healthcare services: Opportunities to learn new skills

Whiting 2016

Study design

Focus group

Aim of the study

To provide insight and understanding of the role, value and potential effects of the NHS England Youth Forum

England, UK

N=14

n=5 young people
n=5 adults
n=4 NHS or British Youth Council employees

Data from adults and NHS/British Youth Council employees were not extracted nor included in this review

Characteristics

Age of young people (range): 15-21 years

Gender of young people (M/F): not reported

Recruitment

Purposive sampling of the 20 members of the NHS England Youth Forum, members of an adult reference group and employees of NHS England/British Youth Council

Data collection

Two focus groups, one for young people and one for Adult Reference Group

Analysis

Thematic analysis

Barriers to, and facilitators of, participating in design of healthcare services: Dissemination of output
Barriers to, and facilitators of, participating in design of healthcare services: Format of participation
Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance

Whiting 2018

Study design

Mixed methods including semi-structured interview

Aim of the study

To examine role of the members of the NHS England Youth Forum and the strategies used to influence provision of health services for children and young people.

England, UK

N=8 young people

Characteristics

Age (range): 15-21 years

Gender (M/F): not reported

Recruitment

Purposive sampling of the 25 members of the NHS England Youth Forum

Data collection

Semi-structured interviews

Analysis

Thematic analysis

Barriers to, and facilitators of, participating in design of healthcare services: Dissemination of output
Barriers to, and facilitators of, participating in design of healthcare services: Flexible attendance
Barriers to, and facilitators of, participating in design of healthcare services: Incentives to participate
Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance
Barriers to, and facilitators of, participating in design of healthcare services: Opportunities to learn new skills

: F: female; M: male; N/n: number; NHS: National Health Service; NHSEYF: NHS England youth forum; PPI: Patient and Public Involvement

Table 3Summary of included service evaluation studies

Study

Population

Methods

CASP quality assessment rating

Ellis 2014

Study design

Mixed methods questionnaire

Aim of the study

To use an experience-based design approach to examine, improve and measure the consultation experience of patients and staff

Dorset, UK

N=150 children and young people

Characteristics

Age (range): 10-16 years

Gender (M/F): not reported

Recruitment

Consecutive orthodontic patients attending the clinic

Data collection

Experience-based design approach to ‘Capture, Understand, Improve, and Measure’ using multiple choice and free text questionnaire

Analysis

Free text questionnaire analysed using word clouds and emotion maps

Moderate concerns

Fletcher 2011

Study design

Participatory-based activities and focus group

Aim of the study

To involve children and young people in the development of a new undergraduate children’s nursing programme curriculum.

South England, UK

N=69 children and young people

Participatory-based activities with child and parent on ward

n=61

Focus group with members of youth parliament

n=8

Characteristics

Participatory-based activities with child and parent on ward

Age of children:

Preschool age, n=8
5-11 years, n=28
>11 years, n=25

Gender (M/F): not reported

Focus group with members of youth parliament

Age: not reported

Gender (M/F): not reported

Recruitment

Convenience sampling of children (and their parents) admitted to one of 2 inpatient children wards, or young people attending young parliament meeting

Data collection

Participatory-based ‘Draw and write/tell’ method using customised instrument and script for activity with child and parent on ward or focus group using customised instrument with members of youth parliament

Analysis

Thematic analysis

Moderate concerns

Maconochie 2010

Study design

Participatory-based activities

Aim of the study

To examine the perspectives of young children of parents who participate in a weekly postnatal parent-baby group

Sheffield, UK

N=42

n=18 child-mother dyads
n=2 health visitors
n= support staff
n=1 community midwife
n=1 doctoral researcher

Characteristics

Age of children (range): 0-4 years

Gender (M/F): not reported

Recruitment

Participants recruited from weekly postnatal parent-baby group held at children’s centre

Data collection

Participatory-based activities adapted from Mosaic Approach including: focus groups with parents, informal conversation, observation and reflection, and picture-taking using cameras; books created using materials garnered from activities

Analysis

Thematic analysis

Moderate concerns

Manning 2018

Study design

Participatory-based activities

Aim of the study

To identify priorities for services and research with children and young people and families who have survived critical childhood illness.

Midlands, UK

N=24

n=8 children and young people
n=6 parents/carers
n=8 health professionals
n=1 commissioner
n=1 service manager

Characteristics

Age of children and young people (range): 7-15 years

Gender (M/F): not reported

Recruitment

Purposive sampling using chain-referral of subjects invited to a 5-hour consultation event

Data collection

Participatory-based group activities using ‘Draw, write/tell’ method followed by debrief

Analysis

Inductive thematic analysis by 2 researchers

Moderate concerns

: CASP: Critical Appraisal Skills Programme

Table 4Summary of the evidence from national surveys

National surveys	Association for Young People’s Health. Young people’s views on involvement and feedback in healthcare 2014 National Children’s Bureau. Listening to children’s views on health provision 2012 Word of Mouth Research and Point of Care Foundation. An options appraisal for obtaining feedback on the experiences of children and young people with cancer 2018
Areas covered	Giving views about health and wellbeing Successful participation Importance of using patient experience information Incentives Age-appropriate methods
Key findings	Young people preferred providing their views using questionnaires or focus groups, rather than in large groups or at meetings and activities led by adults Young people thought it was useful for them to be involved in most areas of service design and thought their feedback should be used to improve the quality of care provision

Table 9Excluded studies and reasons for their exclusion

Study	Reason for Exclusion
Bergman, H., Kornør, H., Nikolakopoulou, A., Hanssen-Bauer, K., Soares-Weiser, K., Tollefsen, T. K., Bjørndal, A., Client feedback in psychological therapy for children and adolescents with mental health problems, Cochrane Database of Systematic Reviews, 2018 [PMC free article: PMC6513116] [PubMed: 30124233]	Does not include qualitative evidence
Chandra-Mouli, V., Lenz, C., Adebayo, E., Lang Lundgren, I., Gomez Garbero, L., Chatteriee, S., A systematic review of the use of adolescent mystery clients in assessing the adolescent friendliness of health services in high, middle, and low-income countries, Global health action, 11, 1536412, 2018 [PMC free article: PMC6282470] [PubMed: 30482103]	Systematic review about mystery clients with no separate analysis on high- income countries
Daniels, Karen, Cultural agents creating texts: A collaborative space adventure, Literacy, 48, 103–111, 2014	Not related to BCYP engagement in design of healthcare services
Datt, C., Travers, M., Odell, C., Improving the hospital experience for young people (YP) with autism, Archives of disease in childhood, 102 (Supplement 1), A20, 2017	Conference abstract
D’Aulerio, M., Carli, V., Iosue, M., Basilico, F., De Marco, A. M., Recchia, L., Balazs, J., Germanavicius, A., Hamilton, R., Masip, C., Mschin, N., Varnik, A., Wasserman, C., Hoven, C., Sarchiapone, M., Wasserman, D., Young and suicide prevention programs through internet and media: Supreme, European Psychiatry. Conference: 21st European Congress of Psychiatry, EPA, 28, 2013	Conference abstract
Davey, A., Asprey, A., Carter, M., Campbell, J. L., Trust, negotiation, and communication: young adults’ experiences of primary care services, BMC family practice, 14, 202, 2013 [PMC free article: PMC3880848] [PubMed: 24373254]	Age group of subjects is 18-25 years
Davies, Adam, Randall, Duncan, Perceptions of children’s participation in their healthcare: A critical review, Issues in comprehensive pediatric nursing, 38, 202–221, 2015 [PubMed: 26331450]	This review focusses on children’s participation in their healthcare, but not their engagement in design of healthcare services
Davies, K., Armitage, C. J., Lin, Y. L., Munro, J., Walsh, T., Callery, P., Development of an implementation intention-based intervention to change children’s and parent-carers’ behaviour, Pilot and Feasibility Studies, 4 (1) (no pagination), 2018 [PMC free article: PMC5513026] [PubMed: 28725453]	Not related to BCYP engagement in design of healthcare services
Davis, C., www.clicsargent.org.uk/relationships-how clic sargent developed an online tool to help 16 to 24-year-olds manage the impact of cancer ontheir personal and sexual relationships, Pediatric Blood and Cancer, 63 (Supplement 3), S224–S225, 2016	Conference abstract
Davis, E., Young, D., Gilson, K. M., Swift, E., Chan, J., Gibbs, L., Tonmukayakul, U., Reddihough, D., Williams, K., A Rights-Based Approach for Service Providers to Measure the Quality of Life of Children with a Disability, Value in Health, 21, 1419–1427, 2018 [PubMed: 30502786]	Not related to BCYP engagement in design of healthcare services
Davison, Jo, Zamperoni, Victoria, Stain, Helen J., Vulnerable young people’s experiences of child and adolescent mental health services, Mental Health Review Journal, 22, 95–110, 2017	This paper is about BCYP experiences of the CAMHS service, and does not include data on BCYP engagement in design of healthcare services
Day, C., Michelson, D., Hassan, I., Child and adolescent service experience (ChASE): measuring service quality and therapeutic process, The British journal of clinical psychology / the British Psychological Society, 50, 452–464, 2011 [PubMed: 22003953]	Not a qualitative study
Desai, A. D., Burkhart, Q., Parast, L., Simon, T. D., Allshouse, C., Britto, M. T., Leyenaar, J. K., Gidengil, C. A., Toomey, S. L., Elliott, M. N., Schneider, E. C., Mangione-Smith, R., Development and Pilot Testing of Caregiver-Reported Pediatric Quality Measures for Transitions Between Sites of Care, Academic pediatrics, 16, 760–769, 2016 [PMC free article: PMC9534576] [PubMed: 27495373]	Not related to BCYP engagement in design of healthcare services
Dixon, E., Murray, N., Collins, N., Carr, S. B., The good, the bad and the future: Families’ views on the Royal Brompton Hospital (RBH) paediatric cystic fibrosis (CF) homecare service, Journal of Cystic Fibrosis, 14, S125, 2015	Conference abstract
Dovey-Pearce, Gail, Price, Christine, Wood, Helen, Scott, Tracy, Cookson, Jennifer, Corbett, Sally, Young people (13 to 21) with disabilities in transition from childhood to adulthood: An exploratory, qualitative study of their developmental experiences and health care needs, Educational and Child Psychology, 29, 86–100, 2012	Not related to BCYP engagement in design of healthcare services
Dublon, V. E., Green, S., Benitez-Castillo, M., Edwards, T., Leiva, A., The production of a diabetes information film, by young people who have diabetes, as a means of educating others, Archives of disease in childhood, 103 (Supplement 1), A166, 2018	Conference abstract
Duckett, Paul, Kagan, Carolyn, Sixsmith, Judith, Consultation and participation with children in healthy schools: Choice, conflict and context, American Journal of Community Psychology, 46, 167–178, 2010 [PubMed: 20526665]	Qualitative study on schools. Looks at pupil wellbeing - positive (relationships in school, involvement in decision making for school management) and negative (bullying/ boredom etc. but no mention/ involvement with healthcare design
Duncombe, R., Evans Fry, R., An innovative app designed to reduce healthcare-related anxiety in young children, Archives of Disease in Childhood, 103 (Supplement 1), A160, 2018	Conference abstract
Duran, C., Curtis-Tyler, K., Exploring children’s healthcare experiences of haematopoietic stem cell transplantation (HSCT)-a small scale study for service improvement, Bone Marrow Transplantation, 1), S257, 2016	Conference abstract
Edgington, L., Hill, V., Pellicano, E., The design and implementation of a CBT-based intervention for sensory processing difficulties in adolescents on the autism spectrum, Research in Developmental Disabilities, 59, 221–233, 2016 [PubMed: 27639063]	CBT intervention for sensory processing difficulties in adolescents with autism. Not related to design of services
Edwards, M., Lawson, C., Rahman, S., Conley, K., Phillips, H., Uings, R., What does quality healthcare look like to adolescents and young adults? Ask the experts!, Clinical Medicine, Journal of the Royal College of Physicians of London, 16, 146–151, 2016 [PMC free article: PMC4952968] [PubMed: 27037384]	Mixed age population without separate analysis for BCYP group
Eisen, Isabel, Cunningham, Barbara Jane, Campbell, Wenonah, Al-Busaidi, Batorowicz Bell Bergold Boxall Bruce Burles Capewell Carlsson Carnahan Carter Cheak-Zamora Cheak-Zamora Clark-Ibanez Cluley Coad Collier Connelly Cussen Danker Dassah Dockrell Faircloth Fereday Galloway Germain Gibson Gibson Gillam Goldbart Goodwin Ha Harper Harrington Holliday Jones King Kirk Lal Lamb Lariviere-Bastien Lindsay Lloyd Mahon Molloy Nguyen Obrusnikova Owen Phelan Pinborough-Zimmerman Prins Ripat Savin-Baden Singhal Smith Sunderland Teti Wang Wang Ware Whitney Wiart, Conducting participatory photography with children with disabilities: A literature review, Disability and Rehabilitation: An International, Multidisciplinary Journal, 41, 1943–1954, 2019	Systematic review. References Included studies checked for inclusion - none were identified
Ely, B., Chen Lim, M., Becker, E., Wilson Jr, B., The pain experience of hospitalized youth: Assessment and management preferences, Journal of Pain, 1), S3, 2016	Conference abstract
Ely, E., Chen-Lim, M. L., Carpenter, K. M., Wallhauser, E., Friedlaender, E., Pain Assessment of Children with Autism Spectrum Disorders, Journal of developmental and behavioral pediatrics : JDBP, 37, 53–61, 2016 [PubMed: 26703326]	Study from USA and not related to engagement of BCYP in design of healthcare services
Entwistle, V. A., McCaughan, D., Watt, I. S., Birks, Y., Hall, J., Peat, M., Williams, B., Wright, J., Patient Involvement in Patient Safety, Group, Speaking up about safety concerns: multi-setting qualitative study of patients’ views and experiences, Quality & Safety in Health Care, 19, e33, 2010 [PubMed: 21127092]	Only one condition included in the study included children (childhood asthma). The interview reported does not include themes related to design of healthcare services
Everley, S., Children’s understanding of physical activity and health, Obesity facts, 10 (Supplement 1), 227, 2017	Conference abstract
Fern, L. A., Taylor, R. M., Whelan, J., Pearce, S., Grew, T., Brooman, K., Starkey, C., Millington, H., Ashton, J., Gibson, F., The art of age-appropriate care: Reflecting on a conceptual model of the cancer experience for teenagers and young adults, Cancer Nursing, 36, E27–E38, 2013 [PubMed: 23632467]	Not related to BCYP engagement in design of healthcare services. Study specific to health condition (cancer)
Gersch, Irvine, Lipscomb, Anna, Stoyles, Gerard, Caputi, Peter, Using philosophical and spiritual conversations with children and young people: A method for psychological assessment, listening deeply and empowerment, Educational and Child Psychology, 31, 32–47, 2014	Not related to BCYP engagement in design of healthcare services
Ghisoni, M., Wilson, C. A., Morgan, K., Edwards, B., Simon, N., Langley, E., Rees, H., Wells, A., Tyson, P. J., Thomas, P., Meudell, A., Kitt, F., Mitchell, B., Bowen, A., Celia, J., Priority setting in research: user led mental health research, Research Involvement & Engagement, 3, 4, 2017 [PMC free article: PMC5611630] [PubMed: 29062529]	Not related to BCYP engagement in design of healthcare services
Gray, N., Mepani, B., Reed, H., Sassoon, R., Starbuck, L., Developing a collaborative adolescent health research charter with young people, Turk Pediatri Arsivi, 2), 96, 2013	Conference abstract
Harper, B., Dickson, J. M., Bramwell, R., Experiences of young people in a 16-18 Mental Health Service, Child and Adolescent Mental Health, 19, 90–96, 2014 [PubMed: 32878383]	Not related to BCYP engagement in design of healthcare services
Hayter, Mark, Involving service users in the development and evaluation of health care and services - good practice and the need for a research agenda, Contemporary Nurse, 40, 103–105, 2011 [PubMed: 22570880]	Editorial
Hopwood, B., Tallett, A., Little voice: giving young patients a say, Nursing times, 107, 18–20, 2011 [PubMed: 22239046]	Survey without qualitative data
Hulin, J., Baker, S. R., Marshman, Z., Albadri, S., Rodd, H. D., Development of a decision aid for children faced with the decision to undergo dental treatment with sedation or general anaesthesia, International journal of paediatric dentistry, 27, 344–355, 2017 [PubMed: 27684707]	Not related to BCYP engagement in design of healthcare services
Jaume, N., Abbiss, M., Wray, J., Ashworth, J., Brown, K., Cairns, J., CHILDSPLA: a collaboration between children and researchers to design and animate health states, Child: care, health and development, 41, 1140–1151, 2015 [PubMed: 26227090]	Study is about development of an app/character in different health states. No use of the tool to inform healthcare services
Jensen, H. I., Ammentorp, J., Kofoed, P. E., Assessment of health care by children and adolescents depends on when they respond to the questionnaire, International Journal for Quality in Health Care, 22, 259–265, 2010 [PubMed: 20427521]	Not a qualitative study
Larkin, M., Boden, Z. V., Newton, E., On the Brink of Genuinely Collaborative Care: Experience-Based Co-Design in Mental Health, Qualitative health research, 25, 1463–1476, 2015 [PubMed: 25829467]	Population > 18 years
Lin, P. H., Intille, S., Bennett, G., Bosworth, H. B., Corsino, L., Voils, C., Grambow, S., Lazenka, T., Batch, B. C., Tyson, C., et al.,, Adaptive intervention design in mobile health: intervention design and development in the Cell Phone Intervention for You trial, Clinical trials (london, england), 12, 634–645, 2015 [PMC free article: PMC4643384] [PubMed: 26229119]	Development of an intervention for weight loss in adults
McGraw, M., Fellows, S., Long, A., Millar, H., Muir, G., Thomson, A., Uddin, S., Watt, J., Williams, S., Feedback on doctors’ performance from parents and carers of children: A national pilot study, Archives of Disease in Childhood., 26, 2011 [PubMed: 21616961]	Not a qualitative study
McNicholas, F., Reulbach, U., Hanrahan, S. O., Sakar, M., Are parents and children satisfied with CAMHS?, Irish Journal of Psychological Medicine, 33, 143–149, 2016 [PubMed: 30115187]	Quantitative survey
Nightingale, R., Hall, A., Gelder, C., Friedl, S., Brennan, E., Swallow, V., Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration, Journal of medical Internet research, 19, e235, 2017 [PMC free article: PMC5516103] [PubMed: 28676470]	Related to design of a specific app. Not related to design of healthcare services
Noonan, R. J., Boddy, L. M., Fairclough, S. J., Knowles, Z. R., Write, draw, show, and tell: a child-centred dual methodology to explore perceptions of out-of-school physical activity, BMC public health, 16, 326, 2016 [PMC free article: PMC4832535] [PubMed: 27080384]	The study relates to perceptions regarding non NHS commissioned health promotion intervention
Nuti, A., Pryce, R., Assessing service satisfaction levels of adolescents with diabetes in out-patient clinic setting: A patient response outcome measure, Hormone Research in Paediatrics, 1), 291, 2013	Conference abstract
Ochieng, B. M., Black African migrants: the barriers with accessing and utilizing health promotion services in the UK, European Journal of Public Health, 23, 265–269, 2013 [PubMed: 22683768]	Study related to access of health promotion services
Ogston-Tuck, S., Baume, K., Clarke, C., Heng, S., Understanding the patient experience through the power of film: A mixed method qualitative research study, Nurse education today, 46, 69–74, 2016 [PubMed: 27607526]	Not related to BCYP engagement in design of healthcare services
Oldham, G., Sidhu-Bevan, H., Wray, J., Using patient-reported experience measures as quality improvement tools in a specialist children’s hospital, Archives of disease in childhood, 102 (Supplement 1), A24–A25, 2017	Conference abstract
O’Loughlin, K., Dimmock, V., Runnacles, J., Botting, N., Lanlehin, R., Wong, S., Lofton, L., Promoting multiprofessional learning through the development of a standardised paediatric in situ simulation programme; A multi-centred approach, Archives of disease in childhood, 102 (Supplement 1), A83, 2017	Conference abstract
O’Reilly, M., Dogra, N., Hughes, J., Reilly, P., George, R., Whiteman, N., Potential of social media in promoting mental health in adolescents, Health promotion international, 30, 30, 2018	Not related to BCYP engagement in design of healthcare services
Oulton, K., Wray, J., Carr, L., Hassiotis, A., Jewitt, C., Kerry, S., Tuffrey-Wijne, I., Gibson, F., Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families, BMJ open, 6, 2016 [PMC free article: PMC5168702] [PubMed: 27940626]	Not related to BCYP engagement in design of healthcare services
Owens, C., Sharkey, S., Smithson, J., Hewis, E., Emmens, T., Ford, T., Jones, R., Building an online community to promote communication and collaborative learning between health professionals and young people who self-harm: an exploratory study, Health expectations : an international journal of public participation in health care and health policy, 18, 81–94, 2015 [PMC free article: PMC5060752] [PubMed: 23075133]	Not related to BCYP engagement in design of healthcare services
Pak, S., McMillan, S., Cohen, C., Jones, R., Think U know? Think again: Tailoring services for young people, HIV Medicine, 3), 41, 2014	Conference abstract
Pert, Hayley, Diaz, Clive, Thomas, Nigel, Children’s participation in LAC reviews: A study in one English local authority, Child & Family Social Work, 22, 1–10, 2017	Study relates to children’s participation in looked after children reviews. Not related to BCYP engagement in design of healthcare services
Phillips, R., Absolom, K., Stark, D., Glaser, A., A simple practical patient-reported clinic satisfaction measure for young adults, British journal of cancer, 103, 1485–1488, 2010 [PMC free article: PMC2990574] [PubMed: 21063420]	Adult population
Plax, K., Donnelly, J., Federico, S. G., Brock, L., Kaczorowski, J. M., An Essential Role for Pediatricians: Becoming Child Poverty Change Agents for a Lifetime, Academic Pediatrics, 16, S147–S154, 2016 [PubMed: 27044693]	Not related to BCYP engagement in design of healthcare services
Ramaswami, U., Stull, D. E., Parini, R., Pintos-Morell, G., Whybra, C., Kalkum, G., Rohrbach, M., Raluy-Callado, M., Beck, M., Chen, W. H., Wiklund, I., Measuring patient experiences in Fabry disease: validation of the Fabry-specific Pediatric Health and Pain Questionnaire (FPHPQ), Health and quality of life outcomes, 10 (no pagination), 2012 [PMC free article: PMC3487958] [PubMed: 22992222]	Not related to BCYP engagement in design of healthcare services
Richardson, P., George, B., Doyle, A., Kelly, S., Kisler, J., How should we listen to the children? Developing a child reporting assessment questionnaire in a tertiary spasticity clinic, Developmental medicine and child neurology, 2), 54, 2013	Conference abstract
Robards, F., Kang, M., Usherwood, T., Sanci, L., How Marginalized Young People Access, Engage With, and Navigate Health-Care Systems in the Digital Age: Systematic Review, Journal of Adolescent Health, 365–381, 2018 [PubMed: 29429819]	Not related to BCYP engagement in design of healthcare services
Robinson, J., Bailey, E., Hetrick, S., Paix, S., O’Donnell, M., Cox, G., Ftanou, M., Skehan, J., Developing Social Media-Based Suicide Prevention Messages in Partnership With Young People: Exploratory Study, JMIR Mental Health, 4, e40, 2017 [PMC free article: PMC5647460] [PubMed: 28978499]	Study conducted in Australia
Ryninks, K. E., Burren, C. P., Garratt, V. L., Developing a patient reported outcome and experience measure for a specialised paediatric service, Archives of disease in childhood, 1), A101, 2014	Conference abstract
Salema, N. M., Elliott, R. A., Glazebrook, C., Click, capture, converse: Using photography to elicit adolescents’ views regarding asthma management, International journal of pharmacy practice, 1), 12, 2010	Conference abstract
Scott, Judith, Wishart, Jennifer, Currie, Candace, Including children with intellectual disabilities/special educational needs into national child health surveys: A pilot study, Journal of Applied Research in Intellectual Disabilities, 24, 437–449, 2011	Study is about piloting 2 administration methods for survey questionnaire. Not related to BCYP engagement in design of healthcare services
Sexton, K., Heinz, P., Lothian, K., Young people get active! focus group involvement to improve the experience of adolescent paediatric patients in emergency departments, Archives of Disease in Childhood: Education and Practice Edition, 1), A109, 2013	Conference abstract
Sharkey, S., Lloyd, C., Tomlinson, R., Thomas, E., Martin, A., Logan, S., Morris, C., Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study, Health expectations : an international journal of public participation in health care and health policy, 19, 738–750, 2016 [PMC free article: PMC5055242] [PubMed: 25156078]	Not related to engagement of BCYP in design of healthcare services
Small, N., Raghavan, R., Pawson, N., An ecological approach to seeking and utilising the views of young people with intellectual disabilities in transition planning, Journal of Intellectual Disabilities, 17, 283–300, 2013 [PubMed: 23940112]	Not related to BCYP experience in healthcare
Smith, J., Parent-professional collaboration when a child presents with potential shunt malfunction, Nursing children and young people, 27, 22–27, 2015 [PubMed: 25671753]	Not related to BCYP engagement in design of healthcare services
Smith, N., Jandial, S., Rapley, T., Foster, H., Collaborative development of paediatric musculoskeletal matters (PMM)-an online evidence based information resource for paediatric musculoskeletal medicine, Annals of the rheumatic diseases, 2), 414, 2015	Conference abstract
Smith,A.H.K., Dixon,A.L., Page,L.A., Health-care professionals’ views about safety in maternity services: a qualitative study, Midwifery, 25, 2131, 2009 [PubMed: 19095334]	Not related to BCYP engagement in design of healthcare services
Stones, S. R., Swallow, V., Majeed-Aris, R., Hall, A., Involvement of children and young people with long-term conditions in the development of mobile app technology to promote disease self-management, Annals of the rheumatic diseases, 2), 163–164, 2015	Conference abstract
Sturt, J., Dliwayo, T. R., Forjaz, V., Hamilton, K., Bryce, C., Fraser, J., Griffiths, F., Eliciting the Impact of Digital Consulting for Young People Living With Long-Term Conditions (LYNC Study): Cognitive Interviews to Assess the Face and Content Validity of Two Patient-Reported Outcome Measures, Journal of medical internet research, 20, e268, 2018 [PMC free article: PMC6231804] [PubMed: 30309832]	Not related to engagement in design of healthcare services
Sutcliffe, P., Martin, S., Sturt, J., Powell, J., Griffiths, F., Adams, A., Dale, J., Systematic review of communication technologies to promote access and engagement of young people with diabetes into healthcare, BMC endocrine disorders, 11 (no pagination), 2011 [PMC free article: PMC3024230] [PubMed: 21210964]	Systematic review of quantitative studies
Taggart, Danny, Franks, Wendy, Osborne, Oz, Collins, Suzanne, ‘We are the ones asking the questions’: The experiences of young mental health service users conducting research into stigma, Educational and Child Psychology, 30, 61–71, 2013	Not related to BCYP engagement in design of healthcare services
Tallett, A., Hopwood, B., Using a child-friendly survey to obtain feedback about the hospital experience of young inpatients, Archives of Disease in Childhood: Education and Practice Edition, 1), A67, 2013	Conference abstract
Taylor, R., Fern, L., Gibson, F., Whelan, J., Steps in the development of a patient-reported outcome measure for teenage and young adults with cancer: The brightlight survey, Pediatric Blood and Cancer, 59 (6), 1009, 2012	Conference abstract
Tsakos, G., Blair, Y. I., Yusuf, H., Wright, W., Watt, R. G., Macpherson, L. M. D., Developing a new self-reported scale of oral health outcomes for 5-year-old children (SOHO-5), Health and quality of life outcomes, 10 (no pagination), 2012 [PMC free article: PMC3413607] [PubMed: 22676710]	Study specifically related to development of scale for oral health outcomes. Not related to BCYP engagement in design of healthcare services
Tume, L. N., Preston, J., Blackwood, B., Parents’ and young people’s involvement in designing a trial of ventilator weaning, Nursing in Critical Care, 21, e10–8, 2016 [PubMed: 26486094]	Not related to BCYP engagement in design of healthcare services- this study is related to designing trial of a specific intervention
Van De Vijver, M., Bertaud, S., Nailor, S., Marais, G., Baby diaries: A tool to improve parental communication in the neonatal unit, Archives of Disease in Childhood, 99, A81–A82, 2014	Conference abstract
van den Driessen Mareeuw, F. A., Hollegien, M. I., Coppus, A. M. W., Delnoij, D. M. J., de Vries, E., In search of quality indicators for Down syndrome healthcare: a scoping review, BMC health services research, 17, 284, 2017 [PMC free article: PMC5395825] [PubMed: 28420357]	Not related to BCYP engagement in design of healthcare services
Van Doorn, W. A. T., Tallett, A., Burger, S., Witwicki, C., Collecting feedback from young outpatients using a survey suitable for children, Archives of disease in childhood, 101 (Supplement 1), A200–A201, 2016	Conference abstract
Waite-Jones, J. M., Majeed-Ariss, R., Smith, J., Stones, S. R., Van Rooyen, V., Swallow, V., Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study, JMIR MHealth and UHealth, 6, e25, 2018 [PMC free article: PMC5797289] [PubMed: 29351898]	Related to design of a specific app. Not related to design of healthcare services
Wall, Sarah E., Templeton, Lorna J., The use of drawings to explore young people’s views of a service for those affected by parental alcohol misuse, Journal of Substance Use, 16, 439–451, 2011	Not related to experience in healthcare- related to views of a service for those affected by parental alcohol misuse
Wells, F., Ritchie, D., McPherson, A. C., ‘It is life threatening but I don’t mind’. A qualitative study using photo elicitation interviews to explore adolescents’ experiences of renal replacement therapies, Child: care, health and development, 39, 602–612, 2013 [PubMed: 22676493]	Not related to BCYP engagement in design of healthcare services
Whitehouse, H. J., Lock, S., Slack, T. W., Layton, A. M., The Facebook effect: Using digital technology and social media to increase research participation from teenagers and healthcare professionals, British Journal of Dermatology, 175 (Supplement 1), 36, 2016	Conference abstract
Whiting, L. S., Roberts, S. A., “we want to influence”: An evaluation of the national health service england youth forum, Archives of disease in childhood, 101 (Supplement 1), A365–A366, 2016	Conference abstract
Williams, F., McCafferty, A., Dunkley, C., Kirkpatrick, M., A UK survey of the experience of service provision for children and young people with epilepsy, Seizure, 60, 80–85, 2018 [PubMed: 29929110]	Quantitative survey
Wolf, Sarah, Winkler, Roman, A systematic Analysis of Evaluation Methods for Inpatient Children and Adolescents Rehabilitation Programs, Eine systematische Analyse zu Evaluierungsmethoden fur stationare Kinder- und Jugendrehabilitationsprogramme., 232, 187–196, 2020 [PubMed: 32588415]	Review of measuring instruments for rehabilitation programs. Not related to design of healthcare services

: CAMHS: Child and Adolescent Mental Health Service; LAC: looked after children

Design of healthcare services

Authors

Design of healthcare services

Review question

Introduction

Summary of the protocol

Table 1

Methods and process

Clinical evidence

Included studies

Figure 1

Excluded studies

Summary of studies included in the evidence review

Table 2

Table 3

Quality assessment of studies included in the evidence review

Main theme 1: Participation in design of healthcare services

Main theme 2: Barriers to, and facilitators of, participation in design of healthcare services

Evidence from reference groups and focus groups

Evidence from national surveys

Table 4

Economic evidence

Excluded studies

Summary of studies included in the economic evidence review

Economic model

The committee’s discussion of the evidence

Interpreting the evidence

The outcomes that matter most

The quality of the evidence

Benefits and harms

Cost effectiveness and resource use

Other factors the committee took into account

Recommendations supported by this evidence review

References

Appendices

Appendix A. Review protocol

Appendix B. Literature search strategies

Appendix C. Clinical evidence study selection

Appendix D. Clinical evidence tables

Appendix E. Forest plots

Forest plots for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix F. GRADE-CERQual tables

Appendix G. Economic evidence study selection

Economic evidence study selection for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix H. Economic evidence tables

Economic evidence tables for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix I. Economic evidence profiles

Economic evidence analysis for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix J. Economic analysis

Economic evidence analysis for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix K. Excluded studies

Excluded studies for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Clinical studies

Table 9

Economic studies

Appendix L. Research recommendations

Research recommendations for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix M. Evidence from reference groups and focus groups

Reference group and focus group evidence for review question: How can, and how should, the perspective of children and young people, and of the parents or carers of babies inform the design of healthcare services?

Appendix N. Evidence from national surveys

Table 1Summary of the protocol

Figure 1Theme map

Table 2Summary of included qualitative studies

Table 3Summary of included service evaluation studies

Table 4Summary of the evidence from national surveys

Table 9Excluded studies and reasons for their exclusion