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class="bkr_bib"><h1 id="_NBK574985_"><span itemprop="name">Design of healthcare services</span></h1><div class="subtitle">Babies, children and young people’s experience of healthcare</div><p><b>Evidence review K</b></p><p><i>NICE Guideline, No. 204</i></p><p class="contrib-group"><h4>Authors</h4><span itemprop="author">National Guideline Alliance (UK)</span>.</p><div class="half_rhythm">London: <a href="https://www.nice.org.uk" ref="pagearea=meta&targetsite=external&targetcat=link&targettype=publisher"><span itemprop="publisher">National Institute for Health and Care Excellence (NICE)</span></a>; <span itemprop="datePublished">2021 Aug</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-4231-2</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2021.</div></div><div class="bkr_clear"></div></div><div id="niceng204er11.s1"><h2 id="_niceng204er11_s1_">Design of healthcare services</h2><div id="niceng204er11.s1.1"><h3>Review question</h3><p>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?</p></div><div id="niceng204er11.s1.2"><h3>Introduction</h3><p>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.</p><p>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.</p></div><div id="niceng204er11.s1.3"><h3>Summary of the protocol</h3><p>See <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab1/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab1" rid-ob="figobniceng204er11tab1">Table 1</a> for a summary of the population, phenomenon of interest and primary outcomes characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er11tab1"><a href="/books/NBK574985/table/niceng204er11.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11tab1" rid-ob="figobniceng204er11tab1"><img class="small-thumb" src="/books/NBK574985/table/niceng204er11.tab1/?report=thumb" src-large="/books/NBK574985/table/niceng204er11.tab1/?report=previmg" alt="Table 1. Summary of the protocol." /></a><div class="icnblk_cntnt"><h4 id="niceng204er11.tab1"><a href="/books/NBK574985/table/niceng204er11.tab1/?report=objectonly" target="object" rid-ob="figobniceng204er11tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol. </p></div></div><p>For further details see the review protocol in <a href="#niceng204er11.appa">appendix A</a>.</p></div><div id="niceng204er11.s1.4"><h3>Methods and process</h3><p>This evidence review was developed using the methods and process described in <u>Developing NICE guidelines: the manual</u>. Methods for this review question are described in the review protocol in <a href="#niceng204er11.appa">appendix A</a> and the methods supplement.</p></div><div id="niceng204er11.s1.5"><h3>Clinical evidence</h3><div id="niceng204er11.s1.5.1"><h4>Included studies</h4><p>This was a qualitative review with the aim of:
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<ul><li class="half_rhythm"><div>Understanding how children and young people can and should be involved in the design of healthcare services.</div></li></ul></p><p>A systematic review of the literature was conducted using a combined search. Seven studies were included in this review. Five studies used qualitative methods (<a class="bibr" href="#niceng204er11.s1.ref1" rid="niceng204er11.s1.ref1">Alderson 2019</a>, <a class="bibr" href="#niceng204er11.s1.ref3" rid="niceng204er11.s1.ref3">Fletcher 2011</a>, Maconochie 2018, <a class="bibr" href="#niceng204er11.s1.ref5" rid="niceng204er11.s1.ref5">Manning 2018</a>, <a class="bibr" href="#niceng204er11.s1.ref6" rid="niceng204er11.s1.ref6">Whiting 2016</a>). In addition, 2 of the included studies used mixed methods (<a class="bibr" href="#niceng204er11.s1.ref2" rid="niceng204er11.s1.ref2">Ellis 2014</a>, <a class="bibr" href="#niceng204er11.s1.ref7" rid="niceng204er11.s1.ref7">Whiting 2018</a>). All studies were conducted in the UK.</p><p>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 (<a class="bibr" href="#niceng204er11.s1.ref1" rid="niceng204er11.s1.ref1">Alderson 2019</a>, <a class="bibr" href="#niceng204er11.s1.ref6" rid="niceng204er11.s1.ref6">Whiting 2016</a>, <a class="bibr" href="#niceng204er11.s1.ref7" rid="niceng204er11.s1.ref7">Whiting 2018</a>). 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 (<a class="bibr" href="#niceng204er11.s1.ref6" rid="niceng204er11.s1.ref6">Whiting 2016</a>, <a class="bibr" href="#niceng204er11.s1.ref7" rid="niceng204er11.s1.ref7">Whiting 2018</a>); 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.</p><p>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 (<a class="bibr" href="#niceng204er11.s1.ref2" rid="niceng204er11.s1.ref2">Ellis 2014</a>, <a class="bibr" href="#niceng204er11.s1.ref4" rid="niceng204er11.s1.ref4">Maconochie 2010</a>) or to identify relevant areas for change (<a class="bibr" href="#niceng204er11.s1.ref3" rid="niceng204er11.s1.ref3">Fletcher 2011</a>, <a class="bibr" href="#niceng204er11.s1.ref5" rid="niceng204er11.s1.ref5">Manning 2018</a>). 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.</p><p>Three of the participatory methods studies used techniques such as ‘Draw, write/tell’ (<a class="bibr" href="#niceng204er11.s1.ref3" rid="niceng204er11.s1.ref3">Fletcher 2011</a>, Maconochie 2018, <a class="bibr" href="#niceng204er11.s1.ref5" rid="niceng204er11.s1.ref5">Manning 2018</a>), whilst 1 study used an experience-based mixed method design (<a class="bibr" href="#niceng204er11.s1.ref2" rid="niceng204er11.s1.ref2">Ellis 2014</a>). 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 (<a class="bibr" href="#niceng204er11.s1.ref3" rid="niceng204er11.s1.ref3">Fletcher 2011</a>); 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 (<a class="bibr" href="#niceng204er11.s1.ref5" rid="niceng204er11.s1.ref5">Manning 2018</a>). Finally, 1 study involved children and young people, aged 10-16 years, attending an orthodontic clinic to improve the consultation experience (<a class="bibr" href="#niceng204er11.s1.ref2" rid="niceng204er11.s1.ref2">Ellis 2014</a>).</p><p>The included studies are summarised in <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab2/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab2" rid-ob="figobniceng204er11tab2">Table 2</a> and <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab3/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab3" rid-ob="figobniceng204er11tab3">Table 3</a>.</p><p>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 <a class="figpopup" href="/books/NBK574985/figure/niceng204er11.fig1/?report=objectonly" target="object" rid-figpopup="figniceng204er11fig1" rid-ob="figobniceng204er11fig1">Figure 1</a>). Main themes are shown in dark blue and sub-themes in pale blue.</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng204er11fig1" co-legend-rid="figlgndniceng204er11fig1"><a href="/books/NBK574985/figure/niceng204er11.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11fig1" rid-ob="figobniceng204er11fig1"><img class="small-thumb" src="/books/NBK574985/bin/niceng204er11f1.gif" src-large="/books/NBK574985/bin/niceng204er11f1.jpg" alt="Figure 1. Theme map." /></a><div class="icnblk_cntnt" id="figlgndniceng204er11fig1"><h4 id="niceng204er11.fig1"><a href="/books/NBK574985/figure/niceng204er11.fig1/?report=objectonly" target="object" rid-ob="figobniceng204er11fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map. </p></div></div><p>See the literature search strategy in <a href="#niceng204er11.appb">appendix B</a> and study selection flow chart in <a href="#niceng204er11.appc">appendix C</a>.</p></div><div id="niceng204er11.s1.5.2"><h4>Excluded studies</h4><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng204er11.appk">appendix K</a>.</p></div></div><div id="niceng204er11.s1.6"><h3>Summary of studies included in the evidence review</h3><p>Summaries of the studies that were included in this review are presented in <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab2/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab2" rid-ob="figobniceng204er11tab2">Table 2</a> and <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab3/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab3" rid-ob="figobniceng204er11tab3">Table 3</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er11tab2"><a href="/books/NBK574985/table/niceng204er11.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11tab2" rid-ob="figobniceng204er11tab2"><img class="small-thumb" src="/books/NBK574985/table/niceng204er11.tab2/?report=thumb" src-large="/books/NBK574985/table/niceng204er11.tab2/?report=previmg" alt="Table 2. Summary of included qualitative studies." /></a><div class="icnblk_cntnt"><h4 id="niceng204er11.tab2"><a href="/books/NBK574985/table/niceng204er11.tab2/?report=objectonly" target="object" rid-ob="figobniceng204er11tab2">Table 2</a></h4><p class="float-caption no_bottom_margin">Summary of included qualitative studies. </p></div></div><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er11tab3"><a href="/books/NBK574985/table/niceng204er11.tab3/?report=objectonly" target="object" title="Table 3" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11tab3" rid-ob="figobniceng204er11tab3"><img class="small-thumb" src="/books/NBK574985/table/niceng204er11.tab3/?report=thumb" src-large="/books/NBK574985/table/niceng204er11.tab3/?report=previmg" alt="Table 3. Summary of included service evaluation studies." /></a><div class="icnblk_cntnt"><h4 id="niceng204er11.tab3"><a href="/books/NBK574985/table/niceng204er11.tab3/?report=objectonly" target="object" rid-ob="figobniceng204er11tab3">Table 3</a></h4><p class="float-caption no_bottom_margin">Summary of included service evaluation studies. </p></div></div><p>See the full evidence tables in <a href="#niceng204er11.appd">appendix D</a>.</p></div><div id="niceng204er11.s1.7"><h3>Quality assessment of studies included in the evidence review</h3><p>A summary of the strength of evidence (overall confidence), assessed using GRADE-CERQual is presented according to the main themes:</p><div id="niceng204er11.s1.7.1"><h4>Main theme 1: Participation in design of healthcare services</h4><ul><li class="half_rhythm"><div>Sub-theme 1.1: Responsiveness to input. The overall confidence in this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 1.2: Supported engagement. The overall confidence in this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 1.3: Working and collaborating with healthcare professionals. The overall confidence in this sub-theme was judged to be low.</div></li></ul></div><div id="niceng204er11.s1.7.2"><h4>Main theme 2: Barriers to, and facilitators of, participation in design of healthcare services</h4><ul><li class="half_rhythm"><div>Sub-theme 2.1: Dissemination of output. The overall confidence in this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 2.2: Flexible attendance of sessions. The overall confidence in this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 2.3: Format of participation. The overall confidence in this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 2.4: Incentives to participate. The overall confidence in this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-them 2.5: Length and timing of sessions. The overall confidence in this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 2.6: Location, transport and travel distance. The overall confidence in this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 2.7: Opportunities to learn new skills. The overall confidence in this sub-theme was judged to be low.</div></li></ul><p>Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in <a href="#niceng204er11.appf">appendix F</a> for details.</p></div></div><div id="niceng204er11.s1.8"><h3>Evidence from reference groups and focus groups</h3><p>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 <a href="#niceng204er11.appm">appendix M</a>.</p></div><div id="niceng204er11.s1.9"><h3>Evidence from national surveys</h3><p>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 <a class="figpopup" href="/books/NBK574985/table/niceng204er11.tab4/?report=objectonly" target="object" rid-figpopup="figniceng204er11tab4" rid-ob="figobniceng204er11tab4">Table 4</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er11tab4"><a href="/books/NBK574985/table/niceng204er11.tab4/?report=objectonly" target="object" title="Table 4" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11tab4" rid-ob="figobniceng204er11tab4"><img class="small-thumb" src="/books/NBK574985/table/niceng204er11.tab4/?report=thumb" src-large="/books/NBK574985/table/niceng204er11.tab4/?report=previmg" alt="Table 4. Summary of the evidence from national surveys." /></a><div class="icnblk_cntnt"><h4 id="niceng204er11.tab4"><a href="/books/NBK574985/table/niceng204er11.tab4/?report=objectonly" target="object" rid-ob="figobniceng204er11tab4">Table 4</a></h4><p class="float-caption no_bottom_margin">Summary of the evidence from national surveys. </p></div></div><p>See full the full evidence summary in <a href="#niceng204er11.appn">appendix N</a>.</p></div><div id="niceng204er11.s1.10"><h3>Economic evidence</h3><p>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 <a href="/books/NBK574985/bin/niceng204er11_bm8.pdf">supplementary material 6</a> for details.</p><div id="niceng204er11.s1.10.1"><h4>Excluded studies</h4><p>Economic studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng204er11.appk">appendix K</a>.</p></div></div><div id="niceng204er11.s1.11"><h3>Summary of studies included in the economic evidence review</h3><p>No studies were identified which were applicable to this review question.</p></div><div id="niceng204er11.s1.12"><h3>Economic model</h3><p>No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.</p></div><div id="niceng204er11.s1.13"><h3>The committee’s discussion of the evidence</h3><div id="niceng204er11.s1.13.1"><h4>Interpreting the evidence</h4><div id="niceng204er11.s1.13.1.1"><h5>The outcomes that matter most</h5><p>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:
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<ul><li class="half_rhythm"><div>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.)</div></li><li class="half_rhythm"><div>Ease of complaints and compliments procedures</div></li><li class="half_rhythm"><div>Engagement through social media</div></li><li class="half_rhythm"><div>Feedback about how views have affected design of healthcare services</div></li><li class="half_rhythm"><div>Input into commissioning and decision making</div></li><li class="half_rhythm"><div>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</div></li><li class="half_rhythm"><div>Use of age- or developmentally- appropriate format to express views (e.g. drawings)</div></li></ul></p><p>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.</p><p>There was no evidence found specifically on complaints or compliment procedures.</p></div><div id="niceng204er11.s1.13.1.2"><h5>The quality of the evidence</h5><p>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.</p><p>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 (<a class="bibr" href="#niceng204er11.s1.ref1" rid="niceng204er11.s1.ref1">Alderson 2019</a>, <a class="bibr" href="#niceng204er11.s1.ref6" rid="niceng204er11.s1.ref6">Whiting 2016</a>, <a class="bibr" href="#niceng204er11.s1.ref7" rid="niceng204er11.s1.ref7">Whiting 2018</a>) 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.</p><p>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.</p><p>Overall, due to the small amount and poor quality of the evidence, the committee also used their knowledge and experience when drafting the recommendations.</p></div><div id="niceng204er11.s1.13.1.3"><h5>Benefits and harms</h5><p>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.</p><p>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 (<a class="bibr" href="#niceng204er11.s1.ref1" rid="niceng204er11.s1.ref1">Alderson 2019</a>). 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.</p><p>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.</p><p>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.</p><p>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.</p><p>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.</p></div></div><div id="niceng204er11.s1.13.2"><h4>Cost effectiveness and resource use</h4><p>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.</p></div><div id="niceng204er11.s1.13.3"><h4>Other factors the committee took into account</h4><p>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.</p></div></div><div id="niceng204er11.s1.14"><h3>Recommendations supported by this evidence review</h3><p>This evidence review supports recommendations 1.7.1 to 1.7.4 in the NICE guideline.</p></div><div id="niceng204er11.s1.rl.r1"><h3>References</h3><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref1"><p id="p-253">
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<strong>Alderson 2019</strong>
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</p>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. [<a href="/pmc/articles/PMC6737768/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6737768</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31115138" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31115138</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref2"><p id="p-254">
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<strong>Ellis 2014</strong>
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</p>Ellis, P. E., & Silverton, S. (2014). Using the experience-based design approach to improve orthodontic care. Journal of orthodontics, 41(4), 337–344. [<a href="https://pubmed.ncbi.nlm.nih.gov/25404670" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25404670</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref3"><p id="p-255">
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<strong>Fletcher 2011</strong>
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</p>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. [<a href="https://pubmed.ncbi.nlm.nih.gov/21240138" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21240138</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref4"><p id="p-256">
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<strong>Maconochie 2010</strong>
|
|
</p>Maconochie, H., & McNeill, F. (2010). User involvement: children’s participation in a parent-baby group. Community Practitioner, 83(8). [<a href="https://pubmed.ncbi.nlm.nih.gov/20722326" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20722326</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref5"><p id="p-257">
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<strong>Manning 2018</strong>
|
|
</p>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. [<a href="https://pubmed.ncbi.nlm.nih.gov/28516470" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28516470</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref6"><p id="p-258">
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<strong>Whiting 2016</strong>
|
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</p>Whiting, L., Roberts, S., Etchells, J., Evans, K., & Williams, A. (2016). An evaluation of the NHS England Youth Forum. Nursing Standard.</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er11.s1.ref7"><p id="p-259">
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<strong>Whiting 2018</strong>
|
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</p>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. [<a href="https://pubmed.ncbi.nlm.nih.gov/29944305" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29944305</span></a>]</div></p></li></ul></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng204er11.appa"><h3>Appendix A. Review protocol</h3><p id="niceng204er11.appa.et1"><a href="/books/NBK574985/bin/niceng204er11-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol 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?</a><span class="small"> (PDF, 434K)</span></p></div><div id="niceng204er11.appb"><h3>Appendix B. Literature search strategies</h3><p id="niceng204er11.appb.et1"><a href="/books/NBK574985/bin/niceng204er11-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Literature search strategies 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?</a><span class="small"> (PDF, 284K)</span></p></div><div id="niceng204er11.appc"><h3>Appendix C. Clinical evidence study selection</h3><p id="niceng204er11.appc.et1"><a href="/books/NBK574985/bin/niceng204er11-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: 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?</a><span class="small"> (PDF, 219K)</span></p></div><div id="niceng204er11.appd"><h3>Appendix D. Clinical evidence tables</h3><p id="niceng204er11.appd.et1"><a href="/books/NBK574985/bin/niceng204er11-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">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?</a><span class="small"> (PDF, 569K)</span></p></div><div id="niceng204er11.appe"><h3>Appendix E. Forest plots</h3><div id="niceng204er11.appe.s1"><h4>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?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng204er11.appf"><h3>Appendix F. GRADE-CERQual tables</h3><p id="niceng204er11.appf.et1"><a href="/books/NBK574985/bin/niceng204er11-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">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?</a><span class="small"> (PDF, 337K)</span></p></div><div id="niceng204er11.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng204er11.appg.s1"><h4>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?</h4><p>No economic evidence was identified which was applicable to this review question.</p></div></div><div id="niceng204er11.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng204er11.apph.s1"><h4>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?</h4><p>No economic evidence was identified for this review.</p></div></div><div id="niceng204er11.appi"><h3>Appendix I. Economic evidence profiles</h3><div id="niceng204er11.appi.s1"><h4>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?</h4><p>No economic evidence was identified for this review.</p></div></div><div id="niceng204er11.appj"><h3>Appendix J. Economic analysis</h3><div id="niceng204er11.appj.s1"><h4>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?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng204er11.appk"><h3>Appendix K. Excluded studies</h3><div id="niceng204er11.appk.s1"><h4>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?</h4><div id="niceng204er11.appk.s2"><h5>Clinical studies</h5><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er11appktab1"><a href="/books/NBK574985/table/niceng204er11.appk.tab1/?report=objectonly" target="object" title="Table 9" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er11appktab1" rid-ob="figobniceng204er11appktab1"><img class="small-thumb" src="/books/NBK574985/table/niceng204er11.appk.tab1/?report=thumb" src-large="/books/NBK574985/table/niceng204er11.appk.tab1/?report=previmg" alt="Table 9. Excluded studies and reasons for their exclusion." /></a><div class="icnblk_cntnt"><h4 id="niceng204er11.appk.tab1"><a href="/books/NBK574985/table/niceng204er11.appk.tab1/?report=objectonly" target="object" rid-ob="figobniceng204er11appktab1">Table 9</a></h4><p class="float-caption no_bottom_margin">Excluded studies and reasons for their exclusion. </p></div></div></div><div id="niceng204er11.appk.s3"><h5>Economic studies</h5><p>No economic evidence was identified for this review. See <a href="/books/NBK574985/bin/niceng204er11_bm8.pdf">supplementary material 6</a> for details.</p></div></div></div><div id="niceng204er11.appl"><h3>Appendix L. Research recommendations</h3><div id="niceng204er11.appl.s1"><h4>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?</h4><p>No research recommendations were made for this review question.</p></div></div><div id="niceng204er11.appm"><h3>Appendix M. Evidence from reference groups and focus groups</h3><div id="niceng204er11.appm.s1"><h4>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?</h4><p>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.</p><p>No evidence from the reference groups or focus groups was identified for this review question.</p></div></div><div id="niceng204er11.appn"><h3>Appendix N. Evidence from national surveys</h3><p id="niceng204er11.appn.et1"><a href="/books/NBK574985/bin/niceng204er11-appn-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">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?</a><span class="small"> (PDF, 368K)</span></p></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews underpinning recommendations 1.7.1 to 1.7.4 in the NICE guideline</p><p>These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists</p></div><div><p><b>Disclaimer</b>: 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.</p><p>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.</p><p>NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the <a href="http://wales.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Welsh Government</a>, <a href="http://www.scotland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Scottish Government</a>, and <a href="http://www.northernireland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Northern Ireland Executive</a>. All NICE guidance is subject to regular review and may be updated or withdrawn.</p></div><div class="half_rhythm"><a href="/books/about/copyright/">Copyright</a> © NICE 2021.</div><div class="small"><span class="label">Bookshelf ID: NBK574985</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/34730908" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">34730908</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng204er11tab1"><div id="niceng204er11.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574985/table/niceng204er11.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er11.tab1_lrgtbl__"><table class="no_bottom_margin"><tbody><tr><th id="hd_b_niceng204er11.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Population</th><td headers="hd_b_niceng204er11.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>People <18 years old who have experience of healthcare</div></li><li class="half_rhythm"><div>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:
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<ul class="circle"><li class="half_rhythm"><div>the baby or child of the parent or carer is under-5 years-old, or</div></li><li class="half_rhythm"><div>there is a clear rationale provided as to why the study is using parents’ or carers’ views on healthcare as proxies for their child.</div></li></ul></div></li></ul></td></tr><tr><th id="hd_b_niceng204er11.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Phenomenon of interest</th><td headers="hd_b_niceng204er11.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Experience of healthcare, in particular of contributing being involved into the design of healthcare services.</td></tr><tr><th id="hd_b_niceng204er11.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Primary outcomes</th><td headers="hd_b_niceng204er11.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">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):
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<ul><li class="half_rhythm"><div>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.)</div></li><li class="half_rhythm"><div>Ease of complaints and compliments procedures</div></li><li class="half_rhythm"><div>Engagement through social media</div></li><li class="half_rhythm"><div>Feedback about how views have affected design of healthcare services</div></li><li class="half_rhythm"><div>Input into commissioning and decision making</div></li><li class="half_rhythm"><div>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</div></li><li class="half_rhythm"><div>Use of age - or developmentally - appropriate format to express views (e.g. drawings)</div></li></ul></td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">CAMHS: Child and Adolescent Mental Health Service</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng204er11fig1"><div id="niceng204er11.fig1" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%201.%20Theme%20map.&p=BOOKS&id=574985_niceng204er11f1.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img data-src="/books/NBK574985/bin/niceng204er11f1.jpg" alt="Figure 1. Theme map." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 1</span><span class="title">Theme map</span></h3></div></article><article data-type="table-wrap" id="figobniceng204er11tab2"><div id="niceng204er11.tab2" class="table"><h3><span class="label">Table 2</span><span class="title">Summary of included qualitative studies</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574985/table/niceng204er11.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er11.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng204er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng204er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><th id="hd_h_niceng204er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Methods</th><th id="hd_h_niceng204er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes</th></tr></thead><tbody><tr><td headers="hd_h_niceng204er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng204er11.s1.ref1" rid="niceng204er11.s1.ref1">Alderson 2019</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>Semi-structured interview and co-produced group</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>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.</p>
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<p>North-East England, UK</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=16 people
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<ul><li class="half_rhythm"><div>n=11 looked after children and care leavers</div></li><li class="half_rhythm"><div>n=1 participation officer</div></li><li class="half_rhythm"><div>n=4 researchers</div></li></ul>
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<i>Semi-structured interview</i></p>
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<p>N=12 people
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<ul><li class="half_rhythm"><div>n=7 looked after children and care leavers</div></li><li class="half_rhythm"><div>n=1 participation officer</div></li><li class="half_rhythm"><div>n=4 researchers</div></li></ul>
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<i>Co-produced group</i></p>
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<p>N=15 people
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<ul><li class="half_rhythm"><div>n=11 looked after children and care leavers</div></li><li class="half_rhythm"><div>n=1 participation officer</div></li><li class="half_rhythm"><div>n=3 researchers</div></li></ul></p>
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<p>Data from participation officer and researchers were not extracted nor included in this review</p>
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<p>
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<b>Characteristics</b>
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</p>
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<p>Age (range): 15-19 years</p>
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<p>Gender of PPI participants (M/F): 6/5</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<b>Recruitment</b>
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</p>
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<p>Convenience sample of the 11 young people participating in a Patient Public Involvement group and attending a Children in Care Council session</p>
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<p>
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<b>Data collection</b>
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</p>
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<p>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</p>
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<p>
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<b>Analysis</b>
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</p>
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<p>Thematic analysis using constant comparison</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Participation in design of healthcare services: Responsiveness to input</div></li><li class="half_rhythm"><div>Participation in design of healthcare services: Supported engagement</div></li><li class="half_rhythm"><div>Participation in design of healthcare services: Working and collaborating with healthcare professionals</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Flexible attendance</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Format of participation</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Incentives to participate</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Length and timing of sessions</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Opportunities to learn new skills</div></li></ul></td></tr><tr><td headers="hd_h_niceng204er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng204er11.s1.ref6" rid="niceng204er11.s1.ref6">Whiting 2016</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>Focus group</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>To provide insight and understanding of the role, value and potential effects of the NHS England Youth Forum</p>
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<p>England, UK</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=14
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<ul><li class="half_rhythm"><div>n=5 young people</div></li><li class="half_rhythm"><div>n=5 adults</div></li><li class="half_rhythm"><div>n=4 NHS or British Youth Council employees</div></li></ul>
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Data from adults and NHS/British Youth Council employees were not extracted nor included in this review</p>
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<p>
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<b>Characteristics</b>
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</p>
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<p>Age of young people (range): 15-21 years</p>
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<p>Gender of young people (M/F): not reported</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<b>Recruitment</b>
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</p>
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<p>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</p>
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<p>
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<b>Data collection</b>
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</p>
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<p>Two focus groups, one for young people and one for Adult Reference Group</p>
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<p>
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<b>Analysis</b>
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</p>
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<p>Thematic analysis</p>
|
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Dissemination of output</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Format of participation</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance</div></li></ul></td></tr><tr><td headers="hd_h_niceng204er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng204er11.s1.ref7" rid="niceng204er11.s1.ref7">Whiting 2018</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>Mixed methods including semi-structured interview</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>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.</p>
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<p>England, UK</p>
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</td><td headers="hd_h_niceng204er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=8 young people</p>
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|
<p>
|
|
<b>Characteristics</b>
|
|
</p>
|
|
<p>Age (range): 15-21 years</p>
|
|
<p>Gender (M/F): not reported</p>
|
|
</td><td headers="hd_h_niceng204er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Recruitment</b>
|
|
</p>
|
|
<p>Purposive sampling of the 25 members of the NHS England Youth Forum</p>
|
|
<p>
|
|
<b>Data collection</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
<p>
|
|
<b>Analysis</b>
|
|
</p>
|
|
<p>Thematic analysis</p>
|
|
</td><td headers="hd_h_niceng204er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Dissemination of output</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Flexible attendance</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Incentives to participate</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Location, transport and travel distance</div></li><li class="half_rhythm"><div>Barriers to, and facilitators of, participating in design of healthcare services: Opportunities to learn new skills</div></li></ul></td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">F: female; M: male; N/n: number; NHS: National Health Service; NHSEYF: NHS England youth forum; PPI: Patient and Public Involvement</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng204er11tab3"><div id="niceng204er11.tab3" class="table"><h3><span class="label">Table 3</span><span class="title">Summary of included service evaluation studies</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574985/table/niceng204er11.tab3/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er11.tab3_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng204er11.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng204er11.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng204er11.tab3_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng204er11.tab3_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">CASP quality assessment rating</th></tr></thead><tbody><tr><td headers="hd_h_niceng204er11.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng204er11.s1.ref2" rid="niceng204er11.s1.ref2">Ellis 2014</a>
|
|
</p>
|
|
<p>
|
|
<b>Study design</b>
|
|
</p>
|
|
<p>Mixed methods questionnaire</p>
|
|
<p>
|
|
<b>Aim of the study</b>
|
|
</p>
|
|
<p>To use an experience-based design approach to examine, improve and measure the consultation experience of patients and staff</p>
|
|
<p>Dorset, UK</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=150 children and young people</p>
|
|
<p>
|
|
<b>Characteristics</b>
|
|
</p>
|
|
<p>Age (range): 10-16 years</p>
|
|
<p>Gender (M/F): not reported</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Recruitment</b>
|
|
</p>
|
|
<p>Consecutive orthodontic patients attending the clinic</p>
|
|
<p>
|
|
<b>Data collection</b>
|
|
</p>
|
|
<p>Experience-based design approach to ‘Capture, Understand, Improve, and Measure’ using multiple choice and free text questionnaire</p>
|
|
<p>
|
|
<b>Analysis</b>
|
|
</p>
|
|
<p>Free text questionnaire analysed using word clouds and emotion maps</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Moderate concerns</td></tr><tr><td headers="hd_h_niceng204er11.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng204er11.s1.ref3" rid="niceng204er11.s1.ref3">Fletcher 2011</a>
|
|
</p>
|
|
<p>
|
|
<b>Study design</b>
|
|
</p>
|
|
<p>Participatory-based activities and focus group</p>
|
|
<p>
|
|
<b>Aim of the study</b>
|
|
</p>
|
|
<p>To involve children and young people in the development of a new undergraduate children’s nursing programme curriculum.</p>
|
|
<p>South England, UK</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=69 children and young people</p>
|
|
<p>
|
|
<i>Participatory-based activities with child and parent on ward</i>
|
|
</p>
|
|
<p>n=61</p>
|
|
<p>
|
|
<i>Focus group with members of youth parliament</i>
|
|
</p>
|
|
<p>n=8</p>
|
|
<p>
|
|
<b>Characteristics</b>
|
|
</p>
|
|
<p>
|
|
<i>Participatory-based activities with child and parent on ward</i>
|
|
</p>
|
|
<p>Age of children:
|
|
<ul><li class="half_rhythm"><div>Preschool age, n=8</div></li><li class="half_rhythm"><div>5-11 years, n=28</div></li><li class="half_rhythm"><div>>11 years, n=25</div></li></ul>
|
|
Gender (M/F): not reported</p>
|
|
<p>
|
|
<i>Focus group with members of youth parliament</i>
|
|
</p>
|
|
<p>Age: not reported</p>
|
|
<p>Gender (M/F): not reported</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Recruitment</b>
|
|
</p>
|
|
<p>Convenience sampling of children (and their parents) admitted to one of 2 inpatient children wards, or young people attending young parliament meeting</p>
|
|
<p>
|
|
<b>Data collection</b>
|
|
</p>
|
|
<p>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</p>
|
|
<p>
|
|
<b>Analysis</b>
|
|
</p>
|
|
<p>Thematic analysis</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Moderate concerns</td></tr><tr><td headers="hd_h_niceng204er11.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng204er11.s1.ref4" rid="niceng204er11.s1.ref4">Maconochie 2010</a>
|
|
</p>
|
|
<p>
|
|
<b>Study design</b>
|
|
</p>
|
|
<p>Participatory-based activities</p>
|
|
<p>
|
|
<b>Aim of the study</b>
|
|
</p>
|
|
<p>To examine the perspectives of young children of parents who participate in a weekly postnatal parent-baby group</p>
|
|
<p>Sheffield, UK</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=42
|
|
<ul><li class="half_rhythm"><div>n=18 child-mother dyads</div></li><li class="half_rhythm"><div>n=2 health visitors</div></li><li class="half_rhythm"><div>n= support staff</div></li><li class="half_rhythm"><div>n=1 community midwife</div></li><li class="half_rhythm"><div>n=1 doctoral researcher</div></li></ul>
|
|
<b>Characteristics</b></p>
|
|
<p>Age of children (range): 0-4 years</p>
|
|
<p>Gender (M/F): not reported</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Recruitment</b>
|
|
</p>
|
|
<p>Participants recruited from weekly postnatal parent-baby group held at children’s centre</p>
|
|
<p>
|
|
<b>Data collection</b>
|
|
</p>
|
|
<p>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</p>
|
|
<p>
|
|
<b>Analysis</b>
|
|
</p>
|
|
<p>Thematic analysis</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Moderate concerns</td></tr><tr><td headers="hd_h_niceng204er11.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng204er11.s1.ref5" rid="niceng204er11.s1.ref5">Manning 2018</a>
|
|
</p>
|
|
<p>
|
|
<b>Study design</b>
|
|
</p>
|
|
<p>Participatory-based activities</p>
|
|
<p>
|
|
<b>Aim of the study</b>
|
|
</p>
|
|
<p>To identify priorities for services and research with children and young people and families who have survived critical childhood illness.</p>
|
|
<p>Midlands, UK</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=24
|
|
<ul><li class="half_rhythm"><div>n=8 children and young people</div></li><li class="half_rhythm"><div>n=6 parents/carers</div></li><li class="half_rhythm"><div>n=8 health professionals</div></li><li class="half_rhythm"><div>n=1 commissioner</div></li><li class="half_rhythm"><div>n=1 service manager</div></li></ul>
|
|
<b>Characteristics</b></p>
|
|
<p>Age of children and young people (range): 7-15 years</p>
|
|
<p>Gender (M/F): not reported</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Recruitment</b>
|
|
</p>
|
|
<p>Purposive sampling using chain-referral of subjects invited to a 5-hour consultation event</p>
|
|
<p>
|
|
<b>Data collection</b>
|
|
</p>
|
|
<p>Participatory-based group activities using ‘Draw, write/tell’ method followed by debrief</p>
|
|
<p>
|
|
<b>Analysis</b>
|
|
</p>
|
|
<p>Inductive thematic analysis by 2 researchers</p>
|
|
</td><td headers="hd_h_niceng204er11.tab3_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Moderate concerns</td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">CASP: Critical Appraisal Skills Programme</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng204er11tab4"><div id="niceng204er11.tab4" class="table"><h3><span class="label">Table 4</span><span class="title">Summary of the evidence from national surveys</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574985/table/niceng204er11.tab4/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er11.tab4_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng204er11.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">National surveys</th><td headers="hd_b_niceng204er11.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Association for Young People’s Health. Young people’s views on involvement and feedback in healthcare 2014</div></li><li class="half_rhythm"><div>National Children’s Bureau. Listening to children’s views on health provision 2012</div></li><li class="half_rhythm"><div>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</div></li></ul></td></tr><tr><th id="hd_b_niceng204er11.tab4_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Areas covered</th><td headers="hd_b_niceng204er11.tab4_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Giving views about health and wellbeing</div></li><li class="half_rhythm"><div>Successful participation</div></li><li class="half_rhythm"><div>Importance of using patient experience information</div></li><li class="half_rhythm"><div>Incentives</div></li><li class="half_rhythm"><div>Age-appropriate methods</div></li></ul></td></tr><tr><th id="hd_b_niceng204er11.tab4_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Key findings</th><td headers="hd_b_niceng204er11.tab4_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Young people preferred providing their views using questionnaires or focus groups, rather than in large groups or at meetings and activities led by adults</div></li><li class="half_rhythm"><div>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</div></li></ul></td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng204er11appktab1"><div id="niceng204er11.appk.tab1" class="table"><h3><span class="label">Table 9</span><span class="title">Excluded studies and reasons for their exclusion</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574985/table/niceng204er11.appk.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er11.appk.tab1_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Reason for Exclusion</th></tr></thead><tbody><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC6513116/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6513116</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30124233" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30124233</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Does not include qualitative evidence</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC6282470/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6282470</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30482103" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30482103</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review about mystery clients with no separate analysis on high- income countries</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Daniels, Karen, Cultural agents creating texts: A collaborative space adventure, Literacy, 48, 103–111, 2014
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC3880848/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3880848</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24373254" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24373254</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Age group of subjects is 18-25 years</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Davies, Adam, Randall, Duncan, Perceptions of children’s participation in their healthcare: A critical review, Issues in comprehensive pediatric nursing, 38, 202–221, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/26331450" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26331450</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">This review focusses on children’s participation in their healthcare, but not their engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC5513026/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5513026</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28725453" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28725453</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Davis, C., <a href="http://www.clicsargent.org.uk/relationships-howclic" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">www.clicsargent.org.uk/relationships-how clic</a> 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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/30502786" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30502786</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">This paper is about BCYP experiences of the CAMHS service, and does not include data on BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/22003953" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22003953</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not a qualitative study</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC9534576/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC9534576</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27495373" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27495373</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/20526665" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20526665</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">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</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/27639063" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27639063</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">CBT intervention for sensory processing difficulties in adolescents with autism. Not related to design of services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC4952968/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4952968</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27037384" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27037384</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mixed age population without separate analysis for BCYP group</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. References Included studies checked for inclusion - none were identified</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Ely, B., Chen Lim, M., Becker, E., Wilson
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Jr, B., The pain experience of hospitalized youth: Assessment and management preferences, Journal of Pain, 1), S3, 2016
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/26703326" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26703326</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study from USA and not related to engagement of BCYP in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/21127092" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21127092</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Only one condition included in the study included children (childhood asthma). The interview reported does not include themes related to design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Everley, S., Children’s understanding of physical activity and health, Obesity facts, 10 (Supplement 1), 227, 2017
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/23632467" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23632467</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services. Study specific to health condition (cancer)</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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 [<a href="/pmc/articles/PMC5611630/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5611630</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29062529" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29062529</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/32878383" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32878383</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/22570880" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22570880</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Editorial</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Hopwood, B., Tallett, A., Little voice: giving young patients a say, Nursing times, 107, 18–20, 2011 [<a href="https://pubmed.ncbi.nlm.nih.gov/22239046" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22239046</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Survey without qualitative data</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/27684707" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27684707</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/26227090" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26227090</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study is about development of an app/character in different health states. No use of the tool to inform healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/20427521" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20427521</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not a qualitative study</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/25829467" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25829467</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population > 18 years</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC4643384/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4643384</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26229119" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26229119</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Development of an intervention for weight loss in adults</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/21616961" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21616961</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not a qualitative study</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/30115187" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30115187</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Quantitative survey</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC5516103/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5516103</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28676470" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28676470</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Related to design of a specific app. Not related to design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC4832535/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4832535</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27080384" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27080384</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The study relates to perceptions regarding non NHS commissioned health promotion intervention</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/22683768" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22683768</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study related to access of health promotion services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/27607526" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27607526</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC5168702/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5168702</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27940626" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27940626</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC5060752/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5060752</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23075133" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23075133</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Pak, S., McMillan, S., Cohen, C., Jones, R., Think U know? Think again: Tailoring services for young people, HIV Medicine, 3), 41, 2014
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study relates to children’s participation in looked after children reviews. Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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 [<a href="/pmc/articles/PMC2990574/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2990574</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/21063420" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21063420</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Adult population</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/27044693" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27044693</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC3487958/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3487958</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22992222" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22992222</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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 [<a href="https://pubmed.ncbi.nlm.nih.gov/29429819" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29429819</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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 [<a href="/pmc/articles/PMC5647460/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5647460</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28978499" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28978499</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study conducted in Australia</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study is about piloting 2 administration methods for survey questionnaire. Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC5055242/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5055242</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25156078" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25156078</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to engagement of BCYP in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="https://pubmed.ncbi.nlm.nih.gov/23940112" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23940112</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP experience in healthcare</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Smith, J., Parent-professional collaboration when a child presents with potential shunt malfunction, Nursing children and young people, 27, 22–27, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/25671753" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25671753</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="https://pubmed.ncbi.nlm.nih.gov/19095334" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19095334</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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 [<a href="/pmc/articles/PMC6231804/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6231804</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30309832" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30309832</span></a>]
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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 [<a href="/pmc/articles/PMC3024230/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3024230</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/21210964" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21210964</span></a>]
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review of quantitative studies</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
|
|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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|
</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC3413607/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3413607</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22676710" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22676710</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study specifically related to development of scale for oral health outcomes. Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/26486094" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26486094</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services- this study is related to designing trial of a specific intervention</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC5395825/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5395825</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28420357" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28420357</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="/pmc/articles/PMC5797289/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5797289</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29351898" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29351898</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Related to design of a specific app. Not related to design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to experience in healthcare- related to views of a service for those affected by parental alcohol misuse</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/22676493" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22676493</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Not related to BCYP engagement in design of healthcare services</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/29929110" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29929110</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Quantitative survey</td></tr><tr><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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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 [<a href="https://pubmed.ncbi.nlm.nih.gov/32588415" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32588415</span></a>]
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</td><td headers="hd_h_niceng204er11.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review of measuring instruments for rehabilitation programs. Not related to design of healthcare services</td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">CAMHS: Child and Adolescent Mental Health Service; LAC: looked after children</p></div></dd></dl></dl></div></div></div></article></div><div id="jr-scripts"><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/libs.min.js"> </script><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/jr.min.js"> </script></div></div>
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